Mae Pob Stori’n Bwysig: Sector Gofal Cymdeithasol i Oedolion

Rhagair

This is the fourth Every Story Matters record for the UK Covid-19 Inquiry. It brings together the many thousands of experiences shared with the Inquiry relating to its investigation into the care sector. 

The pandemic touched the lives of so many people in care – those receiving care and support, their families, the care home workforce, domiciliary carers and unpaid carers who looked after them.  Across the UK experiences varied. This record brings together those experiences, giving a voice to those who lived and worked through it.

We heard about the deep challenges people faced – families kept apart, care staff stretched to their limits and loved ones dying in heartbreaking circumstances. Many people spoke about the pain of not being able to hold a hand, share a hug, or say a proper goodbye. For those left behind, the grief was often made harder by the restrictions in place. We also heard about kindness, dedication and small moments of comfort – the social care workforce, paid and unpaid, doing everything they could to bring comfort when it was needed most.

This record ensures these experiences are not forgotten, honouring both the struggles and incredible resilience of those in care, their loved ones and those who cared for them.

We sincerely thank everyone who has contributed their experiences, whether through the webform, at events or as part of targeted research. Your reflections have been invaluable in shaping this record and we are truly grateful for your support.

Diolchiadau

The Every Story Matters team would also like to express its sincere appreciation to all the organisations listed below for helping us capture and understand the voice and care experiences of members of their communities. Your help was invaluable to us reaching as many communities as possible. Thank you for arranging opportunities for the Every Story Matters team to hear the experiences of those you work with either in person in your communities, at your conferences, or online.

Carers UK
Carers Scotland
Carers Wales
Carers NI
Care Association Alliance
Residents and staff at Priory nursing and care homes
Carer Support Carlisle & Eden
Dementia Trust
Re-engage
Care Provider Alliance
National Care Association
Carers Trust
Anchor
Sanctuary Care
Hospice UK
Muslim Women’s Network UK
Methodist Homes (MHA)

Trosolwg

Sut y dadansoddwyd straeon

Mae pob stori a rennir gyda'r Ymchwiliad yn cael ei dadansoddi a bydd yn cyfrannu at un neu fwy o ddogfennau thema fel hon. Cyflwynir y cofnodion hyn o Mae Pob Stori'n Bwysig i'r Ymchwiliad fel tystiolaeth. Mae hyn yn golygu y bydd canfyddiadau ac argymhellion yr Ymchwiliad yn cael eu llywio gan brofiadau'r rhai yr effeithiwyd arnynt gan y pandemig. 

The stories that described experiences of adult social care during the pandemic have been brought together and analysed to highlight key themes. The approaches used to explore stories relevant to this module include: 

• Analysing 46,485 stories submitted online to the Inquiry, using a mix of natural language processing (NLP) and researchers reviewing and cataloguing what people have shared. (See pages 26 & 27 for further explanation of NLP)
• Researchers drawing together themes from 336 research interviews with those involved in adult social care during the pandemic. Interviewees included: people with care and support needs, their loved ones, unpaid carers and social care professionals. 
• Researchers drawing together themes raised by the public and community groups who participated in Every Story Matters listening events across England, Scotland, Wales and Northern Ireland. More information about the organisations the Inquiry worked with to organise these listening events is included in the acknowledgement section of this record. 

More details about how people’s stories were brought together and analysed in this record are included in the Introduction and in the Appendix. The document reflects different experiences without trying to reconcile them, as we recognise that everyone’s experience is unique. 

Throughout the record, we have referred to people who share their stories with Every Story Matters in the ways described above as ‘contributors’. Contributors have had an important role in adding to the Inquiry’s evidence and to the official record of the pandemic. Where appropriate, we have also described more about them (for example, different types of staff working in social care) or the reason why they shared their story (for example, as a person with care and support needs or as an unpaid carer). The table below outlines the different phrases and language we use throughout the record to describe key groups.

The stories people shared about social care during the pandemic

The pandemic had a devastating impact on those with care needs, their families and unpaid carers and social care professionals. 

Those who had a loved one with care and support needs die during the pandemic described to us the aggravated trauma of not being able to be with their loved ones before and when they died and not being able to mourn them properly. Social care professionals described the anguish of supporting people at the end of their lives and effectively standing in for the families of the dying.

Loneliness, anxiety, worry and low mood were widespread.  Lockdowns and visiting restrictions led to increased isolation and distress for people with care and support needs. This put enormous pressure on loved ones, unpaid carers and social care professionals and took its toll on their mental health and wellbeing.

That pressure grew still further when people were discharged from hospitals into increasingly short-staffed care homes without Covid-19 testing or with incorrect or out of date test results.

However, we also heard positive stories of how communities, friends and family pulled together to support those in need, with relationships often strengthened as a result. Some contributors felt protected from the pandemic and acknowledged the excellent care they received in challenging situations. 

Impact of the pandemic on social care

Lockdowns and restrictions on care settings

Many people with care and support needs, their loved ones and social care professionals found lockdowns and social distancing measures stressful and overwhelming. For people with care and support needs who were living at home, the lockdowns led to feelings of loneliness and isolation. Lockdowns and restrictions often meant they were not able to access the care and support they needed, whether this was from loved ones or social care professionals.

“

[I and my unpaid carer] couldn’t see other people … I think my pain and stuff, did get worse, like my joint pain, just because I was moving around less… I wasn’t able to go to my physical therapy appointments either and there wasn’t access to online appointments. So, it was just like that completely stopped…that was really bad.” - Person ag anghenion gofal a chymorth, Lloegr

Family and friends felt extra pressure to provide unpaid care because of lockdown restrictions. They struggled to know how to provide the right care or how to access care and support services. Their caring responsibilities often increased, and this led to stress and worry with many unsure how to cope.

“

My grandma had dementia, so before we were all looking after her…but then no one was allowed to visit each other…she started going funny and it was just me and her… I used to help her eat, her breakfast, her lunch, try giving her a bath, just get her to stand up and even like just in the garden, try making her walk a bit…sometimes, it used to get too much, it got too much [for my mental health].” – Unpaid carer, England

“	We decided we couldn’t let [my father] go into hospital. So, my sister and I did end up doing personal care…the cleaner that my parents had, she also had been a carer, and she taught us how to do that.” – Unpaid carer, England

“

Suddenly, during Covid, there was no time to kind of escape to an environment where you can just be yourself or with other people that have similar experiences, or maybe just to take time off. So, you were 24 hours constantly looking after people and less about yourself. So, it was anxiety and just extreme despondency.   – Unpaid carer, England

Family and friends also found visiting restrictions hard. They wanted to ensure people with care and support needs were safe and cared for appropriately. Contributors told us how they appreciated window visits, telephone and video calls and, later in the pandemic, socially distanced visits. However, this did not make up for the lack of close in-person contact, particularly being able to physically touch, comfort and hug those they cared for.

“

So, at one end [of the table] was my mum, in her coat in her wheelchair, and I was at the other end, sort of, 6 or 8 feet away and it was ‘prison’ visiting…I’m bellowing at her from the other end of a long table…in front of carers who are like minders and you just wanted to say, ‘I want some privacy.’ She couldn’t understand why on earth I wasn’t sitting with her. It was quite distressing really, that we were being treated like that, it used to make me very angry.” – Loved one of a care home resident, England

Some social care professionals said the ability to continue working during lockdowns gave them a sense of normality. Many others felt isolated and overwhelmed. Staff had to work under severe pressure to manage the competing demands of delivering care, with a higher workload and less support over many months. Some care home staff moved into their workplaces to protect residents and their own families. They spent long periods away from loved ones. This led to feelings of loneliness, exhaustion and distress. The restrictions on visits to care homes also placed an additional pressure and responsibility on staff, who sometimes had to take the place of family in caring for residents.

“

We became more than just the residents’ carers; our relationship with them grew during that time, we became their family when their own were no longer allowed to visit. We loved them, like our own. We were the only people they saw on a daily basis and it became the norm for them.” – Care home worker, Northern Ireland

People receiving domiciliary care received shorter and less frequent visits as care services were disrupted by lockdowns and social distancing. Care workers said this reduced the consistency and quality of care they could deliver. Staff also found it difficult to support people with increasing care needs. Care workers were often the only people they were in contact with during lockdowns.

“

No hanging around, no chatting, not too much after the essential care was provided; it was just move on to the next one. Yes, it was quite limited…where I would usually spend maybe an hour-and-a-quarter with one lady, I might’ve just been there 45 minutes, so yes, it was difficult… it was quite cruel on the vulnerable people I was providing care for.” – Domiciliary care worker, Wales

Many people with care and support needs struggled with the impact of reduced social contact and increased isolation. Some disengaged emotionally from family and friends, while others stopped eating enough as they were feeling anxious and depressed.

“	She could not understand why she could only see me only through the window…she stopped eating because she was depressed by life without visitors, and very brief care visits from the staff.” – Bereaved family member of a care home resident, Scotland

We also heard how people with care and support needs started to behave in ways which family and social care professionals found challenging. This particularly impacted people with dementia or a learning disability and autistic people.

“	I worked in a care [home]. I watched adults with learning disabilities not fully understand why their daily lives changed, which meant staff witnessed and experienced more and more challenging behaviour episodes…staff attacks increased.” – Care home worker, Scotland

“

I work[ed] in a care home that supports adults with learning disabilities. The impact on the residents being deprived of proper visits from family took many forms: challenging behaviour, becoming withdrawn…residents who were usually very helpful became very lethargic and moody, their contact with families [on the phone or via video call ] became triggers [for behaviour that challenged].” – Care home worker, Scotland

People with care and support needs also struggled to return to their previous activities and level of independence after restrictions were eased. Many shared how they lost confidence and have continued to be withdrawn.

“

It [the pandemic] has left me with no confidence…I couldn’t, kind of, mix and I couldn’t go out laughing and enjoying myself. It was really bad. You know, I felt [like] a prisoner. I hated it. My physical health really suffered because I wasn’t doing anything…and I’ve just not been able to get it back. I’m very cautious and worried now.” – Person with care and support needs, Wales

Discharge from hospitals into care homes 

We heard how care homes often received new or existing residents discharged from hospitals without adequate notice, with limited information about their condition or without any accurate or recent Covid-19 testing. This created significant challenges for care homes. It put a strain on staff because of the additional workload and uncertainty and was felt to increase the risk of Covid-19 spreading.

“

We started having residents when they go to hospital, they were being quickly sent back to the care home without really a solid discharge plan. And what then happened was that people who were being sent back from hospital were coming back with Covid and then, obviously, it would start to spread. At that time, there was no guideline at all from the government, not officially to us and not even on the TV where we heard most of the guidelines. There was nothing.” – Nurse working in a care home, England

Some contributors shared how they felt pressured by hospital discharge teams to accept new residents from hospitals even though they lacked the information or expertise to care for them. This raised concerns about patient safety and the suitability of the care they could provide.

“	Care homes were being asked to take Covid patients from hospital to reduce pressure on acute services. Instead, we refused, during the first wave, to take new residents, though we were pressured to do so, being told it was ‘our moral duty’.” – Registered manager of a care home, England

“

At [the] beginning [people were discharged into care homes] without any testing in place and also at times without any real assessment to determine the views and wishes of the older people involved. I found this a huge compromise of my ethical values. It was clear that hospitals were becoming overwhelmed.” – Social worker, Scotland

The arrival of residents who tested positive for Covid-19 shortly after discharge created a sense of responsibility for containing outbreaks and protecting other residents and staff. Loved ones and unpaid carers also shared how they felt a sense of fear and panic when they heard about people discharged from hospital into the care home testing positive for Covid-19.

“

Two people that were discharged [from hospital back into the care home, having tested] negative. Two days later, turned out that they had Covid. [Hearing it was in the home] it was like my worst fears had been realised. I just kept waiting for the call to say she had Covid. I couldn’t sleep, I couldn’t eat – it was torture.” – Loved one of a care home resident, Scotland

Gofal diwedd oes a phrofedigaeth 

Visiting restrictions and other Covid-19 infection control measures made it incredibly difficult for loved ones to say goodbye to family or friends at the end of their lives. We heard how people with care and support needs died without seeing their loved ones due to visiting restrictions in place during the first lockdown. This caused immense grief and anguish for family members.

“

You know [when my mum was dying] I would get calls to say this has happened or that. It is distressing. It brings, I suppose, that sense of stress but also grief. And, I guess a sense of isolation, actually, about…not being able to physically be there or do something about it. Helplessness, actually that would be the word. Helplessness.” – Bereaved family member, England

“	We couldn’t see him – they never saw him again. And when he died, of course, we couldn’t go to a funeral, we couldn’t do anything at all. And I don’t think I’ve ever felt so inadequate.” – Bereaved family member, online listening event

People at the end of their lives who were cared for at home by unpaid carers or domiciliary care staff found it difficult to access end of life care. We heard how family members had to care for them with no support or only remote help from health and social care professionals. This placed a great responsibility on loved ones.

“

[My husband] wanted to go into [a nursing home] and they couldn’t take him. [So we cared for him at home], an end of life care nurse or doctor, I’m not sure, rang him about every five or six weeks…all they did, every little problem that he had, they’d just order a load of drugs. We weren’t happy about that. I felt that somebody could’ve come to visit him from end of life care [and help us].” – Bereaved family member, England

Care workers often supported and comforted people as they died, as their family and friends were unable to visit. They shared how they felt overwhelmed and found the experience profoundly challenging. Many told us how the frequency of deaths, the presence of Personal Protective Equipment (PPE) and the restrictions on family visits made end of life care feel impersonal. Care workers provided compassionate care when they were already under severe pressure and this placed a huge emotional toll on them. 

“	Staff were sitting on video calls with families, saying their last goodbye to their loved ones. That was horrendous. You know, staff were crying with the residents, because it was just so emotional for them. They were holding their hands until they died.” – Care home worker, Northern Ireland

“	We really tried to provide the most compassionate care possible… we still provided that professional care that was needed and it was a loving kind of care…despite all the challenges.” – Care home worker, England

We heard how some care homes let family and friends visit their dying loved ones even when restrictions were in place. This was greatly appreciated by loved ones and many recognised that care workers were doing their best in a difficult situation.

“	I will be forever grateful to the care home for allowing us to have that short time with [my mother] at the end of her life.” – Bereaved family member, Wales

However, many loved ones were left with painful memories of struggle and suffering. They were devastated that they could not do more to help and support the person they cared for at the end of their life.

“

My mum was distressed, in a terrible state, and they couldn’t get the CPAP mask on her, so I went in with full PPE on, I could hear her screaming asking for her mummy to come and take her away. She was pushing and fighting, she wasn’t weak. She couldn’t hear my voice or see my face, I wanted to sit and hold her, but I wasn’t allowed to. I couldn’t help her, so I was told I had to leave.” – Bereaved family member, listening event, Northern Ireland

After the death, restrictions affected preparations for the funeral and who could attend. For people from religious groups and those from ethnic minority backgrounds, this impacted practices around death, such as preparation of the body and mourning their loss as a community.  

Some loved ones and social care professionals raised concerns about the treatment and care provided to people at the end of life. They shared experiences of treatment decisions being made without discussions or consultation.

“

For the four to five weeks [in the hospice]…I was told he would die each day. They took out the tube and IV and I don’t know why yet. In the terrible heat they’d offer him iced water and they wouldn’t come back. He couldn’t eat or drink, just left in his room. It was terrible.” – Bereaved family member, listening event, Wales

“

I said give him fluids [when they rang to say he wasn’t drinking much, which is common with dementia], but they had been told not to give fluids. They took him off his blood thinner – one of the key things and they took him off the anti-coagulate, off his morphine patch and gave him something for agitation, I know my dad was agitated because he was frightened, abandoned by me, he was used to me being there all the time.” – Bereaved family member, listening event, Northern Ireland

There were particular concerns about Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices. Some contributors told us about what they believed to be blanket DNACPR notices placed on people because the person lived in a care home or had a learning disability. The lack of transparency and involvement in these decisions caused distress and uncertainty for families.

“	Our local doctor put a blanket DNACPR on all his patients to stop them taking up beds in the hospital which families contested.” – Care home worker, Wales

“	The GP asked for a DNACPR to be in place, my dad knew about this and the possible consequences, he wanted to live, he didn’t want one. Then I found out the GP had visited again unannounced with a DNACPR request and they never mentioned it to me.” – Bereaved family member, listening event, Scotland

“	I have a disability…I am still shaken to the very core of my being, that they imposed ‘Do Not Resuscitate’ notices on those of us with a significant disability or over a certain age.” – Person with care and support needs, Wales

People with care and support needs and those who were clinically vulnerable also told us how alarming conversations around end of life and DNACPR were.

“

Shortly after receiving my shielding letter, I received a phone call from my GP surgery, this telephone call put the greatest fear into me yet. During the conversation I was asked if I had discussed my end of life wishes with my loved ones. Like did I want to go into hospital or stay at home, did I have a DNACPR. This terrified me.” – Person with care and support needs, Scotland

PPE and Covid-19 infection control measures

Social care professionals were confused, stressed and uncertain about frequently changing guidelines on Personal Protective Equipment (PPE). Care providers had to re-use single items, ration supplies or source PPE from hospitals, charities and other community organisations or businesses as there were shortages of PPE during the early stages of the pandemic. Care providers were concerned about the quality and suitability of PPE even as the pandemic progressed and the supply of PPE improved.

“	The masks, at one point whenever you tried to put them on, they would snap. Management kept changing to different ones until we got the right one.” – Care home worker, England

Social care professionals faced increased workloads and discomfort as they were constantly putting PPE on and taking it off again. More rigorous cleaning and disinfection protocols further intensified the pressure on the workforce.

“

We’d find that we had to do a lot more work because people were isolating…we literally were the only people that were going in to see people. We were working 16-hour days… [the PPE] was incredibly time consuming and it took time away from the personal care side of things definitely.” – Domiciliary care worker, England

Many domiciliary care staff also worked on their own, adding to their isolation. They were unable to access support from other colleagues and managers about PPE and challenges delivering care.  

People with care and support needs, loved ones and unpaid carers were often reassured by PPE. However, it also created communication barriers. Some people with care and support needs and social care professionals found it hard to build relationships. Masks obscured facial expressions and emotions, making it particularly difficult to understand non-verbal cues. 

“

You could only see someone’s eyes and I felt that people were less open when they couldn’t see your face. You had to try and engage them more. It was more difficult to engage people when your face is covered. People are more open to you when they can see your face and you’re not completely in that uniform.” – Healthcare worker, England

For people caring for individuals who were d/Deaf or hard of hearing, the inability to lip-read posed a significant challenge and staff sometimes had to remove their masks, potentially increasing the risk of transmission. We also heard how some people with dementia, individuals with a learning disability and autistic people also found PPE frightening and intimidating. In some cases, this led to behaviour which was challenging and made it harder for unpaid carers and social care professionals to provide care. 

Contributors were concerned about the risks of catching Covid-19 themselves or passing it on to family members, despite the use of PPE. Family members and social care professionals who were clinically vulnerable and people from minority ethnic backgrounds were particularly anxious about catching Covid-19.

 

Staff shortages and how care was delivered

Contributors also told us how the social care sector was impacted by severe staff shortages throughout the pandemic. Initially, the reasons staff left the workforce were mainly due to fears of infection, pre-existing health conditions or childcare issues related to school closures. The availability of the workforce throughout the pandemic was further reduced by isolation requirements for positive Covid-19 cases.

“	Staff, a lot of people left because they didn’t want to be put at risk, which then meant you’d got more rotas to cover, more customers to see and less staff to use. The people couldn’t wear PPE, so they’d leave, so then, again, you’d have more things to cover.” – Domiciliary care worker, England

From November 2021 until March 2022 care staff in England were required to have a Covid-19 vaccine to continue to work, while contributors in Scotland, Wales and Northern Ireland shared how there was increasingly an expectation that they would have the vaccine. Some staff left the workforce because having the vaccine was against their personal beliefs, while others had concerns about potential side effects. These concerns particularly affected people from ethnic minority backgrounds. We also heard how some people working on a health and care visa, whose residence in the UK relied on their employment, felt under additional pressure to have the vaccine as they were worried about the impacts of losing their job.

“	We had a dilemma; a couple of staff didn’t want to have a vaccine. So, they were more or less told, ‘Well if you don’t have your vaccine then you can’t work,’ so that caused other upsets and arguments.” – Registered manager of a care home, England

Staff shortages sometimes led to strained relationships between colleagues as they worked under ever increasing pressure on longer shifts with an even greater workload. Staff shortages also left care providers struggling to resource services and to care for people. Care providers often relied on agency staff to fill these gaps. Agency staff were often temporary care workers who changed frequently and did not always know the people they were caring for, which affected the quality of care provided.

“

You’d get agency staff. They’re good, but they’re not regular. They don’t know these residents as much. And they come in with that fear, ‘Oh, there’s Covid in this home,’ and they will only do the basic [level of care]. The whole situation was a disaster. Residents, in most cases, did not receive the care they should have.” – Nurse working in a care home, England

 

Access to and experience of healthcare services

We heard how access to healthcare services such as GPs, community services and hospitals was significantly reduced or delayed during the pandemic. People with care and support needs told us how appointments shifted to online or telephone consultations, which were not always suitable, particularly for those with additional communication needs, people with a learning disability and those with dementia. Access to emergency healthcare was also challenging because of increased pressure on hospitals and fears of contracting Covid-19. 

Some social care professionals described examples of some healthcare professionals being hesitant or unable to visit people in person due to staff shortages. This led to an increased workload for care staff, who had to facilitate virtual appointments, follow up with treatment and advice and even certify deaths.

“	One of our staff members was asked to certify a lady’s passing by phone call. And she was like, ‘I’m not trained to do that.’ She’s on the phone calling the GP while trying to console family and she says, ‘Well, it’s the doctor’s job, not mine’.” – Registered manager, England

“	The weight did lie heavy on all of us because even trying to get a doctor out was really difficult because they were short, so the knock on effect from the hospital, the doctors, the GPs – everyone – it just came down, you know? Like dominoes.” – Care home worker, England

 

Cofnod llawn

1. Rhagymadrodd

Cefndir a nodau

Every Story Matters is an opportunity for people across the UK to share their experience of the pandemic with the UK Covid-19 Inquiry. Every story shared is being analysed and turned into themed records for relevant modules. These records are submitted to the Inquiry as evidence. In doing so, the Inquiry’s findings and recommendations will be informed by the experiences of those impacted by the pandemic.

This record reflects the experiences of people with care and support needs (including those who have died), family and friends who cared for them and people working in social care. 

The UK Covid-19 Inquiry is considering different aspects of the pandemic and how it impacted people. This means that some topics will be covered in other Every Story Matters records. For example, experiences of healthcare, the test and trace system and the impacts on children and young people are explored in other modules and will be included in other Every Story Matters records.

Sut mae pobl yn rhannu eu profiadau

There are several different ways we have collected people’s stories for Module 6. This includes: 

• Gwahoddwyd aelodau'r cyhoedd i gwblhau a ffurflen ar-lein drwy wefan yr Ymchwiliad (paper forms were also offered to contributors and included in the analysis). This asked them to answer three broad, open-ended questions about their pandemic experience. The form asked other questions to collect background information about them (such as their age, gender and ethnicity). This allowed us to hear from a very large number of people about their pandemic experiences. The responses to the online form were submitted anonymously. For Module 6, we analysed 46,485 stories which had been received by the time this record was prepared. This included 38,374 stories from England, 3,775 from Scotland, 3,870 from Wales and 1,999 from Northern Ireland². The responses were analysed through ‘natural language processing’ (NLP), which helps organise the data in a meaningful way. Through algorithmic analysis, the information gathered is organised into ‘topics’ based on terms or phrases. These topics were then reviewed by researchers to explore the stories further (see Appendix for further details). These topics and stories have been used in the preparation of this record.
• The Every Story Matters team went to 31 towns and cities across England, Scotland, Wales and Northern Ireland to give people the opportunity to share their pandemic experience in person in their local communities. Virtual listening sessions were also held online, if that approach was preferred. We worked with many charities and grassroots community groups to speak to those impacted by the pandemic in specific ways. Short summary reports for each event were written, shared with event participants and used to inform this document. For this record about social care, contributions from 18 of these in-person events, as well as additional online events were included.
• Comisiynwyd consortiwm o arbenigwyr ymchwil gymdeithasol a chymunedol gan Every Story Matters i gynnal cyfweliadau manwl to understand the experiences of specific groups, based on what the module legal team wanted to understand. Interviews were carried out with people with care and support needs, those providing unpaid care and support (including loved ones, friends and bereaved families) and those working in social care, whether providing domiciliary care (care provided in someone’s own home) or working in a care home (including healthcare professionals who worked closely with social care providers). These interviews focused on the Key Lines of Enquiry (KLOEs) for Module 6, which can be found yma. In total, 336 people across England, Scotland, Wales and Northern Ireland contributed in this way between June and October 2024. All in-depth interviews were recorded, transcribed, coded and analysed to identify key themes relevant to the Module 6 KLOEs. Those who took part shared their own experiences and also reflected on the experiences of others. This means that through family and loved ones and the social care workforce we have heard the stories of those with care and support needs who were not able to participate themselves or who died during or after the pandemic.

² Contributors were able to select more than one UK nation in the online form, so the total summed across nations is higher than the actual total number of responses received.

The number of people who shared their stories in each UK nation through the online form, listening events and research interviews is shown below: 

Ffigur 1: Ymgysylltiad Mae Pob Stori o Bwys ledled y DU  

I gael rhagor o wybodaeth am sut y gwnaethom wrando ar bobl a’r dulliau a ddefnyddiwyd i ddadansoddi straeon, gweler yr atodiad. 

The presentation and interpretation of stories

It is important to note that the stories collected through Every Story Matters are not representative of all experiences of social care during the pandemic and we are likely to hear from people who have a particular experience to share with the Inquiry, especially on the webform and at listening events. The pandemic affected everyone in the UK in different ways and, while general themes and viewpoints emerge from the stories, we recognise the importance of everyone’s unique experience of what happened. This record aims to reflect the different experiences shared with us, without attempting to reconcile the differing accounts. 

We have tried to reflect the range of stories we heard, which may mean some stories presented here differ from what other, or even many other, people in the UK experienced. Where possible we have used quotes to help ground the record in what people shared in their own words.

Some stories are explored in more depth through case illustrations within the main chapters. These have been selected to highlight the different types of experiences we heard about and the impact these had on people. Contributions have been anonymised by using pseudonyms (rather than the person’s real name). 

We have also developed case studies (Chapter 8), bringing together the stories of different groups within a specific setting based on in-person visits to care providers. These case studies provide a deeper insight into the different types of experiences within care providers from different perspectives. 

Throughout the record, we refer to people who shared their stories with Every Story Matters as ‘contributors’. Where appropriate, we have also described more about them (for example, their role or care setting) to help explain the context and relevance of their experience. We have also included the nation in the UK the contributor is from (where it is known). This is not intended to provide a representative view of what happened in each country, but to show the diverse experiences across the UK of the Covid-19 pandemic. Stories were collected and analysed throughout 2024, meaning that experiences are being remembered sometime after they happened. 

At some points in the record, we reflect what people told us about the working relationship between health and social care services during the pandemic. The experiences of the healthcare system during the pandemic are detailed in the Module 3 record. This record focuses on the experiences of the social care sector and does not attempt to reconcile different perspectives.  

Strwythur y cofnod

This document is structured to allow readers to understand how people experienced social care. The record is arranged thematically with the experience of people with care and support needs, loved ones, unpaid carers and the social care workforce found across all chapters: 

• Chapter 2: Lockdowns and restrictions on care settings
• Chapter 3: Discharge from hospitals into care homes 
• Chapter 4: End of life care and bereavement
• Chapter 5: PPE and infection control measures
• Chapter 6: Staff shortages and how care was delivered
• Chapter 7: Access to and experience of healthcare services
• Chapter 8: Case studies.

Terminoleg a ddefnyddir yn y cofnod

The following terms and phrases are used throughout the record to refer to key groups or particular policies and practices which were relevant to the social care sector during the Covid-19 pandemic. We describe care activities and settings, types of care needs, those who provide care and support, and then some specific terms used in the social care sector.

Adult social care describes help with daily tasks so people can live as independently as possible. It is for adults who may need extra help due to age, disability, illness or other mental and physical health conditions. Adult social care can help with daily tasks such as meal preparation, washing and dressing, toileting and other personal care for older people and working age adults. It can also involve help with transport so people can get around their local community and support for social isolation and loneliness. Adult social care can be provided in several different settings. For Every Story Matters, Module 6 focused mainly on care homes and domiciliary care.

Domiciliary care is also known as home care. It involves a care worker visiting a person’s home to support with daily tasks such as administering medications, washing and dressing, preparing food and cleaning the home. Domiciliary care aims to help people live independently in their own home and to maintain their quality of life. 

Care homes are places where people live to receive extra support with personal care such as eating, washing, dressing and taking medication. There are different types of care homes. Some offer nursing care or specialist dementia care while others do not and may be known as residential care homes. 

People with care and support needs are people aged 18 and over who require support with daily activities including personal care and domestic tasks because of physical or mental health conditions, age or disability. This may include people who: 

• Have a learning disability 
• Are autistic
• Are affected by a mental health condition 
• Are affected by Dementia
• Are frail due to ill health or a physical disability.

Unpaid carers are family members or friends who care for someone with care and support needs. Caring for someone may require a few hours each week or they may be caring for 24 hours a day, seven days a week. Some unpaid carers live with or near to the person they care for whereas others may provide more remote support. Some unpaid carers may look after more than one person. In the record we also use the term ‘loved one’ for people whose family member is in a care home and may not be providing day to day care. Where the person was bereaved during the pandemic, this term is also used to describe the unpaid carers or loved ones.

Social care professionals support people with care and support needs. This includes several professional roles including care workers, registered managers and social workers which are described below.  

Gweithwyr gofal are professionals who support people with care and support needs to live independently and carry out daily activities. This may include helping with eating and drinking, assisting with personal care, booking or accompanying people to appointments and helping with medications. 

Registered manager is a management role required by Care Quality Commission for all registered care settings including care homes and domiciliary care providers. 

Social workers are professionals who support vulnerable people to protect them from harm or abuse and they help people to live independently. They work with people with care and support needs, their loved ones and other professionals to help navigate challenges. This may include assessing people’s needs, organising support and making referrals to other services. 

PPE is Personal Protective Equipment which includes masks, gloves, aprons and visors. 

Donning and doffing is the term used for putting on and taking off PPE, respectively.

2. Lockdowns and restrictions on care settings

How lockdown restrictions affected care and support at home

How living arrangements affected experiences of lockdown

People with care and support needs who had no formal support during the pandemic faced severe challenges which left them stressed, exhausted and isolated.

“

I am disabled and I have a terminal autoimmune disease, so I was shielding…During the pandemic, I felt lost, isolated, lonely, forgotten and scared…Although my sister and her family live next door we did not meet but had a daily phone call for 10 minutes as she looks after her disabled daughter, so was very busy.” - Person ag anghenion gofal a chymorth, Lloegr

People with care and support needs who lived on their own struggled to manage basic tasks such as cooking and washing, which caused them at times to feel helpless and abandoned. These contributors either had to find ways to manage alone or were reliant on very limited support. People who had previously lived independently with support and frequent visits from family and friends were left without anyone to keep an eye on how they were managing.

“	I was bedridden so I couldn’t even cook, so for a few days I had not cooked or eaten anything, so one of my friends, she cooked a meal and left it at the front door, rang the bell and then she left.” - Person ag anghenion gofal a chymorth, Lloegr

“	It was awkward sometimes if that makes sense, I was still capable of putting my own food on etc. I’ve just got to be watched for leaving the gas on. I’ve done that quite a few times.” - Person ag anghenion gofal a chymorth, Lloegr

People using domiciliary care services who were living on their own also reflected on how lonely and isolated they felt. Often the only person they interacted with was their domiciliary care worker.

“

The isolation side of things was really real because I live on my own, so, before they introduced the idea of bubbles, I felt really isolated. So, the only people I was allowed to mix with were my [domiciliary] carers. The overriding thing was serious isolation.” - Person ag anghenion gofal a chymorth, Lloegr

Families, friends and unpaid carers were prevented from visiting people with care and support needs who they did not live with due to lockdown restrictions. They worried greatly about the people they cared for and feared for their wellbeing and safety.

“	[I did not see my father for] 112 days for the first lockdown. Eventually it changed that you could go to somebody’s house if you were caring for them but initially that wasn’t anything that was possible.” - Unpaid carer living separately from the person they cared for, Scotland

For unpaid carers who lived separately from their loved ones, contact was limited to phone or online conversations or leaving essentials like groceries on the doorstep. Unpaid carers found it challenging and stressful to arrange care for people they did not live with.

“

My mum and dad are in their 70s, and their first language is not English…I would go to their house, and I would stand outside… they would be on the doorstep and we would talk about, what have you done, have you rung the carers? What are they offering? Are they coming still? Do you want me to call them?” - Unpaid carer living separately from the person they cared for, England

Many people described feeling torn between the desire to spend time with their loved ones and wanting to protect them from possible Covid-19 infection. Managing the tension between the risks of Covid-19 infection and the risks of leaving family members unsupported caused great distress at the time. Reflecting on this after the pandemic, some regretted following restrictions and not spending more time with the person they cared for, particularly those who have been bereaved. Family members and unpaid carers continue to feel regretful and upset about the time they missed.

“	I wouldn’t hang around as much as I would have liked to, she’d say, “Oh, put the kettle on, have a cup of tea with me” and [I couldn’t…] It’s all these things you regret afterwards it was hard; she was lonely.” - Unpaid carer living separately from the person they cared for, Wales

“

I had followed the rules from the start of the lockdown and did not visit my parents which I now regret, as none of us caught Covid and it would have been safe to have them in our bubble. I feel I missed out on some very important weeks at the end of mum’s healthy life.” - Unpaid carer living separately from the person they cared for, England

In some instances, loved ones and unpaid carers made the decision to break restrictions so they could maintain contact or provide essential care to the person they cared for. Sometimes rules were broken if they lived in a different area and there were limitations on travelling between areas in different lockdown tiers. However, breaking lockdown restrictions to do this was also a source of worry.

“

I should have still been allowed to go into my grandmother’s and sit with her and interact a lot more than dropping the shopping at her front door and then legging it out the garden. After a while I did break the rules because I saw how quickly she was deteriorating and I thought, ‘There’s no way on this planet that I’m not going to go in to see my grandmother. I’m not going to do it.’” - Unpaid carer living separately from the person they cared for, England

“

My dad had motor neurone disease and during Covid we felt like he was left to fend for himself. He was in the later stages of the disease and struggled greatly with mobility. My dad’s day to day care was left to my mum who also has a chronic health condition. When she almost had a breakdown due to the stress of caring for my dad, I broke lockdown rules to help care for him.” - Unpaid carer, England

Andy’s story Andy lives in Scotland and provided care to his grandparents during the pandemic. He did not live close to them. He reflected on how difficult it was to decide whether to follow lockdown restrictions or prioritise the care of his grandparents. His decision to visit them meant that he frequently felt very stressed and worried.
“	I was breaking the rules every day, but I was like, ‘They can fine me, they can literally put me in the back of a police car.’ So, it had a knock-on effect on my health, but what’s a small part of that knock-on effect compared to the upbringing that [my grandparents] gave me, the love, the care, the support.”
Andy was also very worried about transmitting Covid-19 to his grandparents when he visited them, to the extent that it affected his sleep.
“	I was waking up at 2 o’clock, 3 o’clock, 4 o’clock in the morning palpitations, sweating, stressing, ‘Am I going to give them Covid?’ I was doing 2 or 3 tests a day and things like that before I was going through to see them.”
When Andy’s grandmother was dying, his family ignored the rules to ensure they could be with her.
“	We just broke every rule under the sun and my aunt travelled up. It’s her sister as you know. Her sister’s dying and we all felt as if we’d let them down so much during [the pandemic] and that the system let them down. We weren’t going to let them down.”

Other unpaid carers decided to move, to live with the person they cared for, to make sure they could provide the support that was needed. Some experienced a greater sense of unity and closeness with their family because they spent so much time together. Linked to this, they were profoundly grateful for the opportunity they had to spend time with and take care of their loved ones. 

“

My father [was] discharged ahead of the lockdown because the hospital knew he would be safer at home. [It] didn’t feel safe to have carers so I moved in with my parents…For six months I did most things for my dad. Removed his incontinence pad every morning, washed and shaved him every day. …It was a privilege to look after him” - Unpaid carer who moved in with the person they cared for, England

“

Looking after my grandma was really tough, but at the same time, I’m grateful I got to do it…I know it just pushed me down and everything, but…I feel really grateful that [the] same person [who] helped me when I was a baby, brought me up, done so much for me and then me growing up and being able to care for them…I find it a blessing.” - Unpaid carer who moved in with the person they cared for, England

People with care and support needs told us that living with family or carers made adapting to lockdown easier. Having someone to talk to and support them with their care needs made things more manageable. Contributors shared examples of their families and others making up for reduced access to health and social care services during the pandemic. Some spoke warmly of how well looked after and supported they were and appreciated the time they could spend together. As a result, some people with care and support needs looked back on this time with some fondness. 

“

In regards to the care I receive, because we managed to get my daughter home before the lockdown and obviously my wife couldn’t do any work at all until, like, the lockdown eased off, I actually had two adults in the house for the extra day to day care…but yes, with regards to my actual day to day care, it was, kind of, better…and a happy time.” - Person ag anghenion gofal a chymorth, Lloegr

Halema’s story Halema is 74 years old and lives in the Midlands. She has chronic obstructive pulmonary disease (COPD) which restricts her breathing. She also has a pacemaker and other health conditions related to her age. She lives on her own in a flat close to the town centre. She found the introduction of lockdowns extremely challenging. She had previously been a member of different community groups, which gave her a routine and allowed her to interact with people. The lockdowns were a big shock that was difficult to adjust to.
“	It was a massive change not seeing friends or family, it was very challenging.”
However, she received support from her niece who broke lockdown restrictions to visit her every day to prepare her medication and make some food.
“	My health’s not been good for a long time, but it got worse from all the time I spent on my own inside. I saw a lot more of her, because she was coming down more to make sure I was alright, doing all the things that she’s always done, sort of thing, like, getting me up a lot of the times, out of bed, general cleaning round the house. Getting food ready for me, she used to do the shopping online, well mainly online, looking after the tablets.”
The care Halema’s niece provided and the time they spent together, strengthened their relationship. Halema is very appreciative of all the support she received during the pandemic.
“	She’s always cared for me, before the pandemic, but that time, looking back on it, makes me think how lucky I was to have her and my other friends who helped me and checked in on me.”

Unpaid carers’ feelings of loneliness and isolation

Some unpaid carers felt isolated and trapped in their home despite being glad they were able to live with the person they cared for. They found the lockdowns claustrophobic, stressful and felt overwhelmed by the significant demands put on them. 

“

I’m having to constantly worry about [my partner]. I sometimes felt a bit suffocated and trapped, and there was no way of getting out of that. That’s how I felt at times during the pandemic because I felt like I was a prisoner trapped in my own home with no escape.” - Unpaid carer living with the person they cared for, Scotland

“

It was stressful for me, having a child [and my husband, who had cancer] in the house. You’re all confined in one place. I had to do everything around the house. I was taking care of the child, I’m taking care of [my husband], I’m taking care of the house, I’m doing the financial bits, I’m doing the shopping, you know? And then I had no time for myself.” - Unpaid carer living with the person they cared for, England

Family members and unpaid carers felt the absence of their usual support networks. They were not able to see friends or other family members and did not have opportunities for respite when caring was most difficult. This was particularly the case for those who moved in to provide care during lockdowns and were away from their usual routine and surroundings.

“

When he became really ill, it was really draining and scary and very, very lonely. Of course, people would ring and say, ‘If there’s anything we could do’ but there was nothing because, in the first [lockdown], they weren’t allowed in the house. You were totally isolated.” - Gofalwr di-dâl yn byw gyda'r person y maent yn gofalu amdano, Cymru

“	Neither of us had any children…so I moved in to look after him…I’d never done anything like it and it was really intense looking after someone who was ill…with no one else…we didn’t see any family or friends for over a year.” - Unpaid carer who moved in with the person they cared for, England

“

Being confined to one environment…it was quite difficult…it meant even myself, well, there were restrictions to go out and how many times you could go out, it had an impact on me, because it meant, you know, you’re focusing on one person and it feels like you’re neglecting everything else. I believe it had some form of psychological effect [on me].” - Unpaid carer who moved in with the person they cared for, England

Even when unpaid carers and family members were able to take brief breaks from home (for example by walking the dog or shopping for food) as a way of coping with the pressure of providing care, they were often very anxious about the risk of catching Covid-19. They were on constant alert to minimise the risk to themselves and the people they supported.

“

I did take the dogs out, that was my sanity, some time to myself, enjoy the scenery with nobody around, but at the same time [I was always] still worrying what if I did bump into somebody. If I caught it, then it’s going to definitely go back to him and it’s my fault.” - Unpaid carer living with the person they cared for, Scotland

People providing unpaid care were overwhelmed by effects of lockdown and providing round-the-clock care. We heard about wide ranging and significant negative impacts on their physical and mental health. This included debilitating stress, exhaustion and anxiety.

“	At one point, I was probably only getting about four hours sleep a day for months and it just became the norm. I thought I was all right, but I was absolutely exhausted.” - Unpaid carer living with the person they cared for, Northern Ireland

“

The continual caring and [loved one’s] worsening health had an effect on me. I got very stressed to the point that sometimes I found I couldn’t do normal things, I can remember [I tried] emptying the dishwasher and I found it too difficult…I just couldn’t do it.” - Gofalwr di-dâl yn byw gyda'r person y maent yn gofalu amdano, Cymru

Stories from Unpaid carers We also heard at an online event with Carers UK how the pressures of providing care during the pandemic affected people’s mental health and wellbeing.
“	The burden of working maybe 14 or 15 hours a day, seven days a week and caring for my parents who were both shielding, I became burned out. One day, I just started to cry.” – Unpaid carer, listening event, Northern Ireland

We heard about the impact of taking on additional caring responsibilities that led to loved ones and unpaid carers adopting unhealthy habits to cope. This included increased alcohol consumption and changes in diet.

Sally’s story During the pandemic, Sally lived in Scotland, provided care and support for her adult son and both her parents. The demands of taking care of her family members left her feeling exhausted and impacted her physical and mental health.
“	My blood pressure just shot through the roof and even now I have to take a really high level of high blood pressure medication.”
Sally’s son is a quadriplegic. Before the pandemic, he had 24-hour care and required three carers to move him in and out of bed. During the pandemic, Sally took on all of his care and lifted him, despite having had two spinal surgeries herself. She now relies on morphine for pain management which continues to impact her overall wellbeing.
“	My back went completely so I have to take morphine twice a day to be able to get out of bed. My back has not recovered from all of the lifting and the running up and down and the carrying of the shopping and helping mum and dad. I’m probably on morphine for life and that has a massive effect on me, on my wellbeing.”
Sally told us how the stress she felt during the pandemic affected her eating habits, leading to fluctuations in her weight.
“	My eating went crazy, I put on weight, then I lost weight, then I put it back on, then I lost it and that’s one of the ways that I cope with stress and unhappiness. I comfort eat and then I stop eating. I haven’t recovered.”

Some unpaid carers said they lost their sense of self as they prioritised other people’s needs ahead of their own and had little or no access to respite or support. 

“

A lot of people don’t understand that when you have to provide care that itself is like a full-time job. It is challenging and it is physically and mentally draining. A lot of the time I feel I’m not my own person because I’m not getting that chance to think about me and what my needs are. I’m having to focus on everybody else.” - Unpaid carer living with the person they cared for, Scotland

Unpaid carers’ relationships with their other family members were also affected during lockdowns. Some relationships were strained under the pressure of caring.

“	He [my partner] used to get cross with me and I’d get cross with him. He was very, very good with my mum but he’d be snappy with me, because we were both very tired, it did have an effect on us as a couple, definitely. It was a lot of stress at the time.” - Unpaid carer, England

“	It got to the point with my partner where he moved in with his parents during lockdown. The pressure of caring for my mum and everything else. We had had enough.” - Unpaid carer, England

Some unpaid carers also described the personal impact of looking after several people, for example disabled adult children or a spouse and their own parents, while holding down paid work and other family responsibilities.

“	My son, he has eight carers that rotate and do shifts. That all stopped during the pandemic. I was caring for him, my mum moved in and I was caring for her, she was very old, and I have my daughter. I felt like my whole self and life was being split three ways.” - Unpaid carer, England

Stories from Unpaid carers At an online Listening Event with unpaid carers with Carers UK, most contributors told us how they felt they were not appreciated by the rest of society for the support they were providing, the pressures they were under and the toll caring in isolation during lockdowns took on them. This was further reinforced by public demonstrations of appreciation and support for the health and social care workforce which did not include unpaid carers.
“	I think the isolation was really, really stark, nobody looked after us, our [local supermarket] didn’t open early for carers. We were really completely on our own.”  – Unpaid carer, listening event
“	Nobody cared about us. Nobody. We clap for carers, but we didn’t clap for us who were fighting behind closed doors.” – Unpaid carer, listening event
“	You feel very isolated. Nobody rings up to say, not even a phone call to say, how are you like, on your home full-time looking after two people that are really sick? I’m absolutely, utterly exhausted, I’ve got PTSD [post-traumatic stress disorder], compassion fatigue, all of that from my caring role. Nobody cares, because they think that you know, you’re a nurse. And you know, if there’s something wrong, you’re too tired to ask for help. Like a lot of these other people probably say, if you do need help, you know, you have to fight for it, fight and fight and fight.” – Unpaid carer, listening event
“	Carers used to be able to access respite care. Suddenly, during Covid, there was no time to kind of escape to an environment where you can just be yourself or with other people that have similar experiences, or maybe just to take time off. So, you were 24 hours constantly looking after people and less about yourself. It was anxiety and just extreme despondency.” – Unpaid carer, listening event

People with care and support needs and feelings of loneliness and isolation

Domiciliary care workers told us that those they cared for became anxious and worried during the pandemic. Some became emotionally withdrawn and stopped engaging with others. We also heard from domiciliary care workers about how the loneliness and isolation of people with care and support needs caused a loss of appetite or interest in food or a lack of motivation to cook and eat alone. 

“

Lots of them became depressed, you know, very tearful and anxious. One of my ladies was blind, she’s passed away now sadly. So, you can imagine, she was blind and so it was tough enough as it was with her. And then, that on top when she had no company as such apart from myself, which depended on which day and usually, sometimes only two hours, sometimes three hours, sometimes four hours depending. Yes, so she found it extremely hard.” - Domiciliary care worker, Wales

“	They just didn’t want to eat, like, they went off their food and that was from obviously mental health they decided that they weren’t going to eat.” - Domiciliary care worker, England

In a few cases, people with care and support needs reacted to feelings of loneliness and isolation by lashing out at others, in some cases unintentionally hurting themselves. The pandemic also changed care worker perspectives on what had to be prioritised and it became harder to monitor behaviours that required close attention and safeguarding concerns as they could not visit people in person. This was a particular issue for some working age autistic people, adults with a learning disability and older people with dementia.

“	We had residents living with dementia. There was more challenging behaviour that was becoming apparent. Because they were frustrated and alone.” - Care home worker, Wales

Contributors reflected on how hard it was for some people to regain independence once lockdowns were eased and society started to open up again.

“	I used to be a good walker, I’d walk everywhere. And now I kind of have trouble even going outside the door. So sometimes I feel better if I isolate myself and kind of end up, I don’t go anywhere.” - Person ag anghenion gofal a chymorth, Lloegr

“

I did notice that some of them were less likely to do things for themselves because they were so used to people doing it for them. During Covid they just stopped, so some people I think didn’t end up going back again obviously because, you know, the older you are the harder it is. So, some of them were never able to get back out after Covid mindset and that’s where their life would have changed, really would have been during Covid.” - Domiciliary care worker, England

Access to community support and social connections

Many people with care and support needs living on their own or being cared for by family felt helpless and unable to manage their daily lives as many of the support services they relied on closed during lockdowns and took a long time to re-open.

“	Adult centres stopped, everything stopped, there were no outings for them anymore, they didn’t start going to the adult centre again until long after everything else had already opened.” – Domiciliary care worker, Northern Ireland

 

Some people with care and support needs were deeply distressed by the sudden change in their routine and the total disruption and loss of their usual activities and community support. Some unpaid carers caring for adults with a learning disability or autistic people said their relationships were strained by these changes, particularly where the people they cared for were not able to understand what was happening and why. In some instances, people with care and support needs assumed this was a decision their carers had made, believing they were being kept from other people, which led to conflict and frustration for all involved.

“	[When she went from six hours a day with carers to none] she thought it was just something I was doing: I was keeping her in, I wasn’t allowing her to go meet her friends. So, we did argue quite a bit.” – Unpaid carer living with the person they cared for, Wales

 

This loss of routine had a significantly detrimental effect. Unpaid carers described people with care and support needs, especially autistic people and individuals with a learning disability, displaying behaviours that they found challenging and distressing to deal with.

“

My autistic child missed [her] routine which would result in meltdowns and [feeling] overwhelmed that she was not getting a break from the toxic home environment. [It] impacted her sleep and behaviours; she would sleep for only four hours a night and she was very aggressive towards me as that was her only way of communicating the impact.” – Unpaid carer living with the person they cared for, England

 

Anne and Tim’s story Anne, who lives in Northern Ireland, was the unpaid carer for her non-verbal autistic son Tim, aged 23. Before the pandemic Tim was living at home and attending an adult day centre which he loved and where he was doing very well. All this changed during lockdown. When Tim could no longer go to the adult day centre which shut during lockdown his routine was disrupted and this affected his behaviour and wellbeing.
“	He was constantly pulling at you to get his clothes on, to get his coat on, to get his bag to go to the adult centre. He was just super focused on going back to the adult centre. That’s what he wanted to do.”
“	He was constantly waiting for the bus to come. He had a bag with a folder in it like a daily folder where they wrote down what sort of day he had. He had that in his hands all the time. I had noticed then that he wasn’t sleeping then at all. He wasn’t sleeping. He was maybe getting 40 minutes a night. The rest of the time he was very agitated, running up and down the stairs, constantly trying all the doors.”
Even though Anne took Tim for walks to get out of the house he was still agitated and lashed out physically in a way which he had not done since he was a young child.
“	We get nipped. He hurts himself. He also bites himself and then he would damage the house. He would kick doors.”
This affected the whole family including his younger siblings who also lived in the home.
“	My daughter was trying to study for her GCSEs with my [autistic] son who didn’t sleep at all and was very noisy. So, [my younger children] had to get locks for their bedroom doors, so they had to lock themselves into their bedrooms at night because he constantly just opened all the doors, turned all the lights on. He would just run round the house from room to room.”
Social services intervened due to concerns about the impact on the siblings and the fire risk of children being locked in their bedrooms at night. The stress of caring for Tim without the support of the wider family also affected Anne’s health and her ability to cope.
“	Just bone tired. I had anxiety. I had depression. I had things I’d never had before.”
As a result of the impacts of lockdown and the closure of the adult centre on Tim’s own behaviour and mental health, the strain on Anne and the effects on her other children, Tim was moved to a supported living setting during 2021 and has not been home to his mother’s house since.
“	I find it extremely difficult to visit Tim because it’s so upsetting. It still doesn’t feel natural to me that strangers are looking after my son, and I very much thought that once the adult centre was back that I would bring him back home. Tim has made it very clear that he does not want to come home with me and won’t even come home for a visit.”
Anne feels that if the adult day centre had remained open during the pandemic none of this would have happened and Tim would still be living at home with her.

Stories from Carlisle At a Listening Event with Carlisle Eden Carers, a support organisation specifically for unpaid carers, we heard how local authorities and charities set up projects to help people living on their own who were not able to get support from friends and family. These projects usually involved volunteers calling people to have conversations, provide information and support their physical and mental health.
“	There were two projects set up that had a positive impact: ‘Keeping People Connected and ‘Pathway Zero’, both involved calling people to tackle loneliness and isolation and to also provide clear information.” – Every Story Matters Contributor, listening event, England
“	A lot of calls we were checking in and having convos with people who were isolated and living for your call. We were able to build great rapport with them. It was a humbling and sobering experience. It felt really hard to end when the project was over. It was really horrible; we are caring people and want to save everyone. It felt like we were their counsellor or therapist by the end.” – Every Story Matters Contributor, listening event, England

Those receiving care from loved ones who did not live with them or who relied on wider networks also discussed how they had to learn how to use new technologies like Zoom or FaceTime during the first lockdown so they could stay in touch with family and friends. 

“	I’m not very good with technology, I don’t understand this Zoom lark and things like- that…so I had to learn to keep in touch with family and friends.” – Person with care and support needs, England

“	I had to learn Skype and Zoom…technology is the thing that brought us together. Community is everything.” – Person with care and support needs, England

Restrictions on movement of residents within care homes

How residents’ movements were managed

People living and working in care homes were profoundly impacted by lockdowns and social distancing restrictions. Care homes took different approaches to implementing restrictions with some keeping people in their rooms all the time, while others tried to have restrictions in place only when there were positive cases of Covid-19, or residents were isolated after discharge from hospital.

Residents who were isolating could not use communal areas such as common rooms, dining rooms and libraries. During periods of isolation, activities were stopped and meals were taken to their rooms, this stopped residents from socialising with each other.

 

“	Just think it was just not seeing people. Just being shut off. Obviously, you know, no one was allowed in any of the communal spaces. Everyone was confined to their rooms.” – Person with care and support needs, England

“	I didn’t go out of my room. I didn’t go down for lunch. They’d leave it or maybe have a mask on and bring it in or leave it on my shelf. We didn’t go down for social activities. I was a few years younger and more mobile, but yes, you miss the company.” – Person with care and support needs, England

Being confined to their room was particularly hard for residents who could not understand why this was happening. Care home staff spent time checking on residents with dementia when they were isolated and confined to their room. This meant they had less time to spend providing care to others.

“	Some were okay with staying in their rooms. The ones with not as much capacity, they couldn’t understand. I think they felt they were being punished for something they didn’t know they’d done.” – Care home worker, England

“	t was a significant period [of time] and it was difficult then when you had individuals with dementia not understanding that they couldn’t leave their room, trying to leave their room, you know and exposing everyone to infection risk…that was quite a difficult challenge.” – Care home worker, Wales

 

How staff implemented restrictions depended on the size, layout and age of the care home and what they thought was practical and possible given the building and facilities of the home. For example, some care homes were able to continue with some communal activities, by getting residents to stand at the door of their room, where they could talk and take part in group activities. We heard how the quality of life for residents was better where care homes found ways to allow continued movement and interaction.

“	[The staff] they did everything they could for us and we still had afternoon activities…crafts, exercise, we had a quiz…we really appreciated that.” – Person with care and support needs, England

 

To keep movement within care homes to a minimum but ensure those without Covid-19 were not restricted, contributors told us that sometimes a floor or specific area was designated for resident isolation. Other care homes arranged areas of the care home into sections or ‘bubbles’, which meant people with dementia could interact with each other but away from the other care home residents.

“

Some were very upset. They like their routines. They like familiar things and some residents couldn’t be confined to their rooms because they wander and they’re not safe, so we had to make provisions down here, so they could be as safe as they could be. We did inform infection prevention that, ‘We can’t stop the wanderers from mixing,’ and they just basically said, ‘Well, observe and what will be will be’.” – Care home worker, England

Staff explained how ensuring that residents remained in these areas was hard to enforce, especially for autistic people and individuals with a learning disability or dementia. The disruption to residents’ routines meant they were often confused and did not understand why they had to stay in their own room or in their designated area.

“

We had people that had learning disabilities with autism, they can’t stay in one place and they just didn’t understand about infection control, so it was hard for staff members to try and separate the residents from each other when they’re not quite understanding and don’t have the capacity to know what was happening.” – Care home worker, England

 

For other care home residents who did have capacity to understand the restrictions, being kept informed of changes within the home by written notifications or verbal explanations was appreciated.

“	We had our meals in our rooms…we have a very good cook, good organiser, with her staff. It all went smoothly. Just fell into place, all the things that were happening here. We were kept informed, that was an important thing.” – Person with care and support needs, England

“	They came up and talked to us or there would be printed notifications. We just knew what was happening. I was fortunate enough; I could understand it all. Obviously, the ladies who had dementia had more of a problem.” – Person with care and support needs, England

 

However, at times care home staff found explaining the rules and answering questions about why residents could not move around the home freely challenging. There were several reasons for this. Sometimes they had mixed feelings about the restrictions and on some occasions their responses led to conflict. Care home staff expressed feelings of guilt for enforcing the infection prevention rules and increasing residents’ isolation.

“

Residents had to cope with living in a small room, isolated, with no contact with their families or each other. This put an enormous strain on the care workers, who were bombarded with questions, assaulted and had no answer to give, the explanations being unbelievable to the residents.” – Care home worker, England

 

Impacts of restrictions on movementRestrictions on movement in care homes had a profound effect on some care home residents, limiting their ability to engage in their usual social activities and interact with other care home residents. Loved ones worried about the isolation residents experienced within care homes, without their usual family contact or social activities. Many said their family member or friend living in a care home was lonely, isolated and depressed. This caused a great deal of sadness and worry for family members.

“	We were very concerned about what level of communication mum was getting. Was anybody even sitting down with her for a few minutes a day just to talk to her? I’d be very surprised.” – Loved one of a care home resident, Northern Ireland

“

On the phone, she said, ‘I’m bored, I can’t go out, I can’t go out.’ for her it was quite a lonely time. I think it was quite confusing for her. And yes, I would say judging by some of her behaviours, that it was actually quite distressing for her which in turn [was] distressing for me.” – Loved one of a care home resident, England

Not every care home experience was the same. For some people who were living in care homes, the pandemic was less challenging because the restrictions did not alter their usual routines and activities. Some said that having to stay in their rooms all day due to the lockdown restrictions, did not dramatically change their lives. Even before the pandemic they often stayed inside the care homes, or in their rooms and kept themselves occupied watching TV, listening to music or reading.

“	My meals were brought to me every day.…It never really had an impact on my life. And I had my laptop with me…I used the Internet [it] was my link to the outside world, because I was linked to friends and family.” – Person with care and support needs, England

 

Stories from Wrecsam At listening events with care and nursing homes in Wrexham, residents shared how fortunate they felt to be living in a care home during the pandemic, as they were close to other people and not as isolated as they would have been living on their own.
“	I liked that I had people around me when I was in the care home, I could always talk to people.” – Person with care and support needs living in a care home, listening event, Wales
“	I was locked in my room with the lockdown, people would knock on my door to give me orange juice sometimes. It was nice. We didn’t have it too bad really.” – Person with care and support needs living in a care home, listening event, Wales

Steve and Irene’s story Steve and Irene live in the North of England and have been married for 45 years. At the start of the pandemic, they were both 92 years old. Steve cared for Irene at home for many years, however, after a fall which caused a bleed on the brain, he was admitted to hospital. Just before the first lockdown, Steve returned home from hospital, but he was not able to care for Irene any longer or live independently.
“	At home, that was difficult because I was previously able to do the shopping and be, like, a main carer, but I was very cautious and worried because I couldn’t do those things anymore.”
Steve and Irene’s daughter helped them to find a place in a care home through a family friend at the start of the pandemic. Four days after leaving hospital Steve and Irene moved into the care home, as they were worried about not being able to get in, as care home staff advised they would have to lock down the home soon. For the first three to four months, they had to stay in their shared room and did not interact with any other resident.   Steve and Irene were relatively content with their living situation as they were receiving good care and support and they felt the pandemic was something happening outside to other people.
“	We didn’t realise how bad it was. We were lucky, we never had any slight inkling of it here, because we were kept in our rooms and looked after and the staff were always masked when they came in.”
Over the course of the pandemic, Steve’s health improved while Irene’s care needs increased. Looking back on the pandemic, they appreciated and enjoyed the time they spent together and felt well supported by the care home.
“	At that particular time, we were unable to look after ourselves in many ways. I’ve improved a lot; it’s only my balance now that I have problems with. So, really and truthfully, the effects of Covid didn’t affect us as much as other people. We were in our room; they looked after us whenever we wanted and we looked after each other.”

Care staff described how residents’ physical and mental health declined during lockdown. Mobility and cognitive ability were particularly affected as residents spent so much time sitting in their rooms on their own. Care home staff suggested that more of their residents were now in poorer health compared with those they cared for pre-pandemic. 

“

Her dementia declined rapidly when lockdown happened and she’d got no family support. So, she’d not got her family coming to see her. She just kind of lost all will. She wasn’t bothered. She really declined. Yes, you can speak to them over the phone. But she didn’t understand that that was her daughter or her son or her grandchild she was speaking to, because she couldn’t physically see their face.” – Care home worker, Northern Ireland

“

An elderly friend in a care home became more and more depressed due to lockdown. She had an emergency dental visit, she was locked in her room for two weeks, in quarantine. After these quarantines, she lost the ability to concentrate and gave up reading altogether. She became deeply depressed.” – Loved one of a care home resident, England

 

Care home staff also told us that some residents refused to eat or ate less when eating by themselves in their rooms without social interaction, encouragement from their families to eat, and the example of others eating around them. In some cases their weight became dangerously low. This led to care staff looking for help and advice from healthcare professionals around malnutrition and how to encourage people to eat more.

“

I think just the social aspect of being able to go into a dining room and sit down and eat a meal with other people, we find with the residents that they tend to eat better in groups. And the ones that generally eat in their rooms don’t often eat as much as they would if they were in the dining room, with the social aspect.” – Nurse working in a care home, England

“

I’d say those residents with advanced dementia, yes, because the loved ones used to come in, and it would prompt them to eat. Some people would prompt their loved ones to eat, because they knew that person. So, I would say definitely yes, weight loss, through lack of stimulation from people they know.” – Registered manager of a care home, England

“

One of our ladies, she would go through cycles not eating, dropping weight, things like that there and … she went down to something like, say she was thirteen stone she went down to about six stone. She lost a lot of weight and was just refusing to eat, just refusing everything, not wanting personal care.” – Care home worker, Scotland

 

Additionally, some residents would not engage with the activities care workers organised to keep residents mentally active and engaged.

“	They’d lost interest because they were out of their routine, out of the familiar surroundings and possibly overthinking, which you would. ‘Why am I here? Why can’t I get up and walk? Why?’” – Care home worker, England

 

Aina’s story Aina lives in the Midlands. She has worked in social care for over ten years and during the pandemic, worked in a care home which provided nursing care.   Throughout the pandemic, she noticed that care home residents became withdrawn and, at times, some seemed to feel hopeless and sad. Some of the people she cared for seemed to close themselves off from the world.
“	Some of my clients didn’t want to even watch TV or listen to the radio, so the times with the carers, it was everything and then, more talking about their childhood and they were very sad. Some of them have really been saying, ‘I want to die.’ It was heart-breaking because you want to help them, you’re trying to, you know, somehow to make their life better, more comfortable.”
Aina also shared how the people she cared for stopped eating as they were feeling so down, withdrawn and isolated. This had an impact on their physical health and mobility which made their care more complicated.
“	They stopped eating, they are weaker, so we try to find a way and try to make them hold on to ensure to make them a little bit stronger. Their mobility went down, some were almost giving up, [they were asking] ‘What is going to be now? Now everyone is going to die.’”
Aina often contacted GPs and dieticians to get support with feeding and making sure people with care and support needs had the right nutrition. However, reflecting on her experience she felt despite their efforts to provide care and support, some people had ‘given up’ as they were separated from their family and loved ones, and this was the reason why some people had stopped eating and their health had worsened.
“	One person I’m thinking of…I think he gave up. It was too much, but like I said I don’t have proof, I cannot say that for sure. I believe he just couldn’t hear his wife and daughter’s voice. I’m not saying that’s the main reason [for his death], but I’m saying that’s why he stopped eating completely.”

Restrictions on visiting care homes

Loved ones’ views on visiting restrictions

Loved ones felt the restrictions on care home visiting were unfair on people with care and support needs living in care homes. Although the restrictions were intended to protect people from catching Covid-19, in some cases contributors described how the restrictions led to serious harm and distress, particularly for autistic people, people with a learning disability and people with dementia. Despite this they also recognised the restrictions were needed to protect residents.

“

My son has severe autism and learning difficulties has no speech and limited understanding, he was in a residential care home, I was unable to visit him for 24 weeks, we couldn’t visit through a window or FaceTime as he would not understand and so become upset it was a choice between keeping him calm or upsetting us all by seeing him through a window.” – Loved one of a care home resident, England

“	At the time, you think, ‘It’s too much’, but they were trying to protect life, weren’t they. None of us knew what to do, so they were very strict and had they not been, we would have lost more lives.” – Loved one of a care home resident, Scotland

 

Loved ones told us about the significant emotional impact visiting restrictions had on them and their loved ones. Losing access to the care home itself, together with an awareness of the additional pressures staff would be dealing with, often made them feel anxious about the quality of care being delivered in care homes. These feelings were compounded by a sense of guilt when a family member moved into a care home.

“	You couldn’t go to see him. That made me feel guilty about my decision [to move him to the care home…our children] were now being kept from seeing their father.” – Loved one of a care home resident, Northern Ireland

“	It was very, very hard. It was like a bereavement, because he was somewhere and I couldn’t see him. I still have guilt that I missed all those visits that I would have made [if I’d been able to].” – Loved one of a care home resident, England

How care homes maintained visiting restrictions

Care home staff told us how hard it was to keep up to date with the guidelines and procedures for managing visits as the restrictions on visiting eased. Despite the uncertainty, registered managers spoke of their determination to ensure that staff, residents and families were as up to date as possible with the guidelines. Some spoke of sharing information via emails or producing leaflets they handed out to families. All of this added to their workload.

“

The communication part became a really big thing for me, just making sure everybody knew what was going on and we were keeping all the relatives up to date when guidelines [for managing visits] came out. There were times where maybe it changed every other week, so we’d have kept them up to date.” – Registered manager of a care home, England

“	Each resident was able to have one or two care partners that could come in and visit at any time. So, we organised all that and put all the paperwork in place for it. It was constant.” – Care home worker, England

Social workers described being stressed and anxious due to the pressure families put on them to visit loved ones. These families would often look to their social worker for additional emotional support and for reassurance their loved one would be fine. Social workers would support each other to manage their own emotions.

“	Social workers working with these families, they would have to come in and offload [to colleagues] because it’s all been projected on to them, the sadness and anxiety that families had about their loved one.” – Social worker, England

 

Loved ones were able to visit people in care homes as the pandemic progressed and restrictions were eased. Care homes worked hard to put in place processes and procedures that allowed families and friends to visit while preventing the spread of infection. For example, some care homes allowed visiting in the garden or through a window or installed plastic partitions and pods so people could remain separate while still communicating. Others used meeting rooms for visits with people with care and support needs.

“	They then put up a summerhouse in the garden, which was incredible. They had a two-way speaker and they had Perspex through. So, then that became, I mean, when they introduced that, that was like a blessing for me.” – Loved one of a care home resident, England

“

There was a glass pod downstairs on the first floor and we were only allowed two [visitors] at a time. Visitors were allowed to come in through the garden entry, so that they didn’t actually come into the home. But they had to prove they had a negative Covid test. They also had to have their temperature taken. We, the residents, sat in the room downstairs and we could see them through the pod and we had little walkie talkies, so we could communicate.” – Person with care and support needs, England

 

Loved ones described other infection control measures in place in care homes, which included a limited number of people visiting, booking appointments, wearing full PPE, testing before entering and a separate door to enter the care home. Most care homes also ensured that social distancing was maintained during visits. Some loved ones found these visiting protocols challenging, time-consuming and difficult to adapt to.

“	We would have to phone an hour prior then if there was Covid, we weren’t allowed into the building. And then, it changed that we were allowed to see them in the garden, but only if both of us tested negative. We weren’t allowed to touch her.” – Loved one of a care home resident, England

“	Just a really horrific experience because you couldn’t go in…there were certain times; you were limited to the amount of people…and the whole process took about three hours just to see her for 15 minutes because you had to test before going in.” – Loved one of a care home resident, England

 

Some care homes restricted visits to a single ‘designated contact’. In other instances, only one or two visitors were allowed at a time. It was difficult for some loved ones to understand the need for some of the restrictions, particularly where other precautions were being taken. In some instances, the relationship with the care home was affected by these restrictions.

“	It makes no difference to your chance of infection [who visits] there were some really arbitrary rules that just felt illogical.” – Loved one of a care home resident, Wales

“	I said, ‘We’re not even coming in the same car. We’re wearing masks. We’re sitting four feet apart. We’re outside. Why are we not allowed to do that [with one more visitor]?” – Loved one of a care home resident, Scotland

When only one or two people were able to visit each time, choosing which family members would visit caused arguments and tension.

“

You were limited [as] to how many people could go, so it would either be my sister and her daughter, or myself and my daughter and it almost caused a family rift because people were arguing over who was going to be going to visit. It became almost like a pecking order, so that made it a bit awkward.” – Loved one of a care home resident, Scotlandr

The ‘designated contact’ rules could also be challenging because of the responsibility placed on the nominated person.

“	It was a hell of a responsibility…you’ve got nobody to share that [difficult experience] with.” – Loved one of a care home resident, England

“	When we were allowed in, they had initiated a one designated visitor [policy] that put quite a strain on me. Obviously, I had to keep healthy because there was no swapping. And then I had to report back to the rest of the family.” – Loved one of a care home resident, England

 

Some care homes did not have specific designated visitors but instead limited the number of visitors at any one time, while in other cases they allowed the nominated contact to change. In these cases, families used this flexibility to allow different loved ones to visit. However, being able to do this heightened frustration with rules that seemed arbitrary and pointless, even though being able to include more of their loved ones in visits was welcome.

“	At one point you were only allowed to have two nominated visitors, but you could change those by calling. There was no limit on how often. It was just a pain having to do a pointless call, making them the nominated visitors.” – Loved one of a care home resident, Wales

Some older people with dementia in care homes could not remember their family members when they eventually did visit in person again. This was because so much time had passed since they had seen them and their memory and health had deteriorated.

“

Some of the ones that did have families, but their families couldn’t come and see them, they missed them. They really missed them and then when restrictions started to die down and their families started to come, they didn’t remember their family, or they just weren’t the same with them because they hadn’t seen them for so long. People with dementia, they just forgot who they were. They still spoke about them, but when they were there in front of them, they didn’t know who it was, which was quite sad. It was hard for the families too.” – Care home worker, England

“	There were no visits or anything for a very long time which was quite sad. Some of them didn’t even recognise who their family were because by that point they’d totally forgotten, which was really upsetting for the family.” – Care home worker, Scotland

Other contributors mentioned the long term impact visiting restrictions had on relationships between care home residents and their families and particularly their grandchildren.

“

I was very close to my grandchildren and they spent a lot of time here with me and, you know, we’d do all our little arts and crafts things, even though they’re teenagers. So, I didn’t see any of them and then of course, after that, we weren’t quite that close after those months of being apart. Now I think about it, we’ve never been that close again. My grandchildren don’t come and see me so much now. It was Covid that made that happen. That couple of months break from them and then we didn’t seem to get that real closeness back again.” – Person with care and support needs, England

Contributors’ experiences of socially distanced visits were mixed. Some found that speaking through partitions or outdoors worked fairly well and were glad to be able to interact with their loved one in a way that seemed safe.

“

The care home, to be fair, were very good. They had a lounge partitioned off with glass panels [so] we could go in and see our relatives and talk with a microphone through the glass. We couldn’t touch them, but we could actually see each other and talk with glass between us – all safe.” – Loved one of a care home resident, Scotland

 

However, others found socially distanced visits challenging. Residents were sometimes confused as to why they were not able to sit together or go inside. The lack of physical contact was also hard to cope with, particularly as it was so different to how they would interact in normal circumstances. Refusing to touch those they cared for felt unnatural and was painful for loved ones. Sometimes this led loved ones to avoid visiting because of the hurt it caused to their family member living in the care home.

“

We were allowed to see them in the garden, but only if both of us tested negative. And then, we weren’t allowed to touch her, but actually, that then became really difficult because she wanted to hold our hands, and she got upset, and it got emotional for her, so we then really didn’t go and see her actually because it then got harder for her and she got more upset.” – Loved one of a care home resident, Scotland

People visiting outdoors in colder months felt physically uncomfortable and worried about the impact of the cold on the person they cared for.

“

When he came out into [the garden], it was a quadrangle in the middle of the care home, as soon as you sat down, he was cold, because it was outside. He always had a blanket around him, with his cap on, and it came to the point where I thought, ‘I’m not putting him through that’, because I didn’t feel that it was doing him any good. It was distressing him more than helping, sort of thing.” – Loved one of a care home resident, England

Contributors also found the lack of privacy challenging and struggled to communicate effectively at a distance.

“

You had no privacy because you had to leave the door open. You couldn’t close the door and I couldn’t have a conversation with my dad to ask him what was going on and how he’s feeling, because every time I turned round, there’d be a carer stood by the door listening.” – Loved one of a care home resident, Wales

Care home residents with dementia were also upset by socially distanced visits, as they had difficulty understanding why they had to stay distanced from their loved ones.

“	They installed pods which were partitioned down the middle. We could now visit mum, but she couldn’t understand why we couldn’t sit with her or hold her hand – again, very distressing.” – Loved one of a care home resident, England

“

Seeing my relative in this room divided by a Perspex screen was just dreadful, not being able to physically touch him, or speak to him properly. It was just distressing. It was almost worse than not seeing him at all. He’d got Alzheimer’s mixed dementia. You just couldn’t explain why he’s there [on one side of a screen] and we’re there [on the other].” – Loved one of a care home resident, England

 

Care home staff also discussed the difficulty in seeing loved ones having to stand behind a screen to visit their family member. They told us it could be challenging to enforce the restrictions, which some thought were unfair, particularly as they caused both loved ones and residents to be upset after the visits. We heard that staff struggled to be the ones responsible for enforcing restrictions. 

“

They were able to stand outside, look through the windows, wave. That was hard, because some of the residents would be in tears and we’d have to console them afterwards. And for those that had dementia, or mild memory problems, then that became an issue, because they could not understand why.” – Care home worker, England

“

[Some families] didn’t agree with us implementing [the restrictions], so we had many families very angry at the time, but again, we are hard-working and convinced them about the safety aspects of that. We had a couple of daughters very annoyed with us and demanded just to come in anyway, and stuff like that.” – Care home worker, Scotland

It was hard for people with care and support needs to understand why the length of each visit was limited in some care homes, as the other restrictions in place meant they would not come into contact with other residents. Loved ones found it painful to leave those they were visiting before they were ready.

“

t was dreadful. He didn’t want me to go. Half an hour, for somebody with dementia, was no time. Trying to explain what had been happening, where I had been and meeting up again after months…was so difficult. He was in pieces when I left his room and I was in pieces.” – Loved one of a care home resident, England

Some loved ones were concerned about the transmission of Covid-19 when visiting care homes and this affected their mental wellbeing and meant they took extra steps to protect themselves and the person they were visiting.

“

I got paranoid about making sure that I [always] had hand sanitiser [and] masks, [and] I’d change my clothes, just to make sure. At the time nobody knew how it was being passed around, so I’d make sure that everything I had on was clean [when I went to see him]. I’d even change my shoes.” – Loved one of a care home resident, England

“

I thought, ‘so what do I do now if I’m immunocompromised, if I’m at risk of picking up the infection as well?’ I just took all the precautions I could to protect myself, [but] I’ve ended up with an anxiety disorder related to all of that, it was quite hard.” – Loved one of a care home resident, Scotland

 

Jean’s story During the pandemic, Jean’s mother lived in a care home in England. Jean felt they implemented strict and inflexible visitor restrictions.
“	Her care home restricted all in-person visitors and visiting timeslots (both in frequency and in length). From March 2020 the care home completely banned all visitors for several months.”
Eventually, the care home allowed 20 minute, in-person visits every two weeks. Residents remained inside the care home, accompanied by a care worker, while visitors stood outside and had to speak loudly through a window. Later, these visits were moved to a room divided by a floor-to-ceiling plastic screen, with the resident and care worker on one side and the visitor on the other.
“	All in-person visits of any kind were then again banned by the care home during the Omicron lockdown, during which my mother died in January 2021. The care home complied strictly with the lockdown rules at the time of her death by permitting me to visit her in person and have physical contact with her for the first time since March 2020, but dressed head to toe in PPE, for just 30 minutes as she lay dying – but she was comatose and by then it was too late for us to speak.”
Since the pandemic, Jean has struggled to come to terms with her mother’s death. She feels angry and let down by the response to the pandemic.
“	My mother’s death in the care home – alone and confused about why her only child appeared to have abandoned her. It absolutely kills me to think about it. I felt, and still feel, angry, powerless and distraught… [The restrictions] caused utter confusion to a dementia patient, and only heartache, [it] affect[ed] my mother’s mental health, causing her dementia to worsen, leading to a sharp decline [and] ending in her death alone without me alongside her.”

Care home residents were unable to have visits from activity and service providers due to restrictions. Residents found it challenging when the activities and services on offer in the home stopped completely, adding to the sense of isolation. This affected activity providers such as those arranging exercise and creative activities. Services, such as chiropody for cutting nails and hairdressers, which helped maintain people’s health, dignity and sense of pride, were also no longer available. Sometimes care home staff were able to provide alternatives, but these were limited.

“

We did have the chiropodist, we didn’t have the hairdresser, we didn’t have anybody come in whatsoever. And I always remember [the care worker] said, ‘I’ll wash your hair while I’m here,’ and she absolutely soaked me. I was drenched. But you couldn’t cut your hair, you couldn’t have anything done.” – Person with care and support needs, England

Virtual contact online and by phone

Loved ones discussed new ways of communicating and how they adapted to these when restrictions prevented them from visiting people in care homes. Staff attempted to maintain contact between those they were caring for and their loved ones through phone or video calls. For care home staff, frequent telephone calls and requests for video calls added to their workload and affected the care they could provide to other residents.

“	The phone would regularly ring more often, just from families, friends, just wanting to speak to relatives, residents if they could. [We] were certainly answering the phone a lot more and dealing with a lot more questions and in that respect, extra work was added.” – Care home worker, England

 

Video calls offered the opportunity both to see and catch up with loved ones and to monitor their wellbeing, which confirmed updates provided by care home staff.

“	At least I could see her and I could see she [was] washed and cleaned and well looking. I could see her so, for me, it was okay – but she found it difficult me not being there.” – Loved one of a care home resident, England

“

When we phoned them, they’d be like, ‘Yes, your mum’s fine. We’ve done this today with her and she’s had a bath’ then we’d FaceTime her [and] we could see she was clean and tidy…you’ve just got to put your trust in them, haven’t you [that] she was looked after even though we couldn’t get in there.” – Loved one of a care home resident, England

Some found video calls a better way to have contact than other options, such as visiting at care home windows.

“

At a window, I think it would’ve been worse for me. I wanted to give him a big hug [and] I couldn’t have done, so being so close would have been rubbing salt into a wound. I know I would’ve probably been an emotional wreck whereas on FaceTime or on the phone, I can walk away, ring back.” – Loved one of a care home resident, England

 

Some loved ones said they had no means of finding out how the person receiving care in the home was doing. This contributed to them feeling anxious about the wellbeing and loneliness of the person they cared for. Others said they were made to feel like a nuisance when they called to ask after the person they cared for.

“	We had [almost] no contact from the care home. They weren’t answering the phone, my son went knocking on the door and got no answer at all. It was like a prison. They shut the door and they weren’t talking to anyone on the outside.” – Loved one of a care home resident, Northern Ireland

“	You also felt like you were a bother when you called it almost was a bit of a ‘sigh’ response when you dared to phone up.” – Loved one of a care home resident, England

Although some residents were able to keep in touch with their loved ones using phones and tablets, with the support of care home staff, this did not make up for a lack of face to face interaction. Video calls were not an option available to everyone. Some noted that people in care homes were unable to engage with this kind of technology, making contact with them more challenging.

“

My mum’s [care home organised] a weekly iPad [call] which was just horrific, how does a 90-year-old know how to use an iPad and talk to you on a Zoom call? I’ve got pictures of the Zoom calls where we’re trying to talk to her and she just kept on disappearing. I actually asked if she could be brought down to the office window so we could actually physically speak to her through the window.” – Loved one of a care home resident, England

Some people with a learning disability and those with dementia found telephone or video calls extremely distressing. Loved ones and unpaid carers told us the people they supported were not able to engage or found them upsetting because they wanted to see their relatives in person.

“	She didn’t understand it and she got quite distressed with the video calls [because she] couldn’t understand that I couldn’t be with her [in person]. That was the hardest thing.” – Loved one of a care home resident, England

The extent to which care homes supported telephone or online communication with loved ones and provided updates on them, made a difference to their family’s understanding of their care. It also improved loved ones’ own wellbeing when they felt more in touch with what was happening in the care home. Family members were grateful for how staff members helped them to stay in touch with their loved ones.

“	They went over and above in terms of communication, in terms of keeping me in touch with her through [the] phone there was never a time when I rang and they were, ‘Oh we’re too busy, we’re too busy’.” – Loved one of a care home resident, England

The importance of contact with family members living in a care home at the end of life is discussed in Chapter 4 and the ways in which maintaining contact contributed to the workloads of care workers is explored in Chapter 6.

3. Discharge from hospitals into care homes

Sharing information

During the pandemic people moved from hospitals into care homes. Sometimes this involved a care home resident who had been to hospital for treatment returning to the same care home. In other cases, patients were discharged from hospital into a care home for the first time. In both situations care homes needed information from the hospital about the tests and treatment the person needing care had received and their current medication. When receiving a new resident into the home, information about the person’s care and support needs was also important so they could be met appropriately.

Sharing of hospital discharge information

Care homes often received new or existing residents discharged from hospitals with very limited information about their health conditions and the care they required.

“

Even our own residents going to hospital for treatment, they weren’t getting the discharge paperwork, we weren’t getting the communication through from the hospitals. The only thing we were getting is a Covid result via an email. Even down to changes in medication, we weren’t getting any information at all. We were then having to ring through, to say, ‘Why is resident A, what was the condition, what happened, what’s this medication they’re on?’ Paperwork just went down the pan basically.” – Registered manager of a care home, England

“

Suddenly the discharge notes stopped [during the pandemic]. We’re used to information and a discharge note. It gives us clarity about medication. If there was a new medication [with the resident], then we knew, but otherwise, if they came back with their own medication, we knew things hadn’t changed. With a new resident, we could phone the GP and say, ‘Listen, we’ve had one of your patients. This is what we’ve got, is there anything else?’ or if there were an extra one, ‘This is an extra medication we’ve got now. Could you look on your portal and tell me if it’s been added?’ That was the only way we could do it.” – Care home worker, England

Care homes often felt pressured to accept discharged patients due to bed shortages in hospitals. Contributors told us how care homes accepted residents without enough information about their needs.

“

We were so stretched in our work, so even just trying to get a room ready. You never knew who you might be getting, whether they might be violent, whether they’ve got dementia. You’d get a brief of the person, but you obviously wouldn’t know until they arrived that you’d get the full picture.” – Registered manager of a care home, England

Care home staff also told us how discharge information was often inaccurate, so they frequently received patients with higher and more complex care needs than expected.

“

What annoyed us was the fact that we were getting messages, we were getting somebody in, so we were asking questions, ‘Have they had this and that?’ And they were saying, ‘Yes, they’ve been tested, they’ve done this, they’ve done that. They can walk, they can talk, they can eat’. And then when that patient was coming in, because we automatically did Covid tests as well when they came in, it felt like we were being lied to because some people were coming in that couldn’t eat by themselves, they couldn’t walk, they couldn’t do anything for themselves.” – Registered manager of a care home, Scotland

In some cases, a lack of important information increased the risk that the staff did not have appropriate expertise and the potential that care home residents would not receive the right type of care.

“

We were getting lied to. It puts the pressure on us because then we’ve not got the staff either to deal with somebody like that, we’re not trained to deal with somebody with major health and mental health issues that needs to be put in a specialist unit.” – Registered manager of a care home, England

Care home staff sometimes had to visit or contact the hospital to clarify what care and medication a resident had received and what they needed next. This added to the considerable workload pressures care home staff faced. Staff were worried about whether they were providing the right care as they did not have all the correct information. 

“

I had to go and assess them because I just wouldn’t take it over the phone or the care plan they used to send us; I would like to go and see them, and I had to go with a member of staff, with masks and our pinnies and gel and everything and I’d assess them.” – Registered manager of a care home, Wales

“

We’d search the bags [for a discharge note] and there’d be nothing and I’d say, ‘There’s no discharge note’. You’d try and get through to the ward, obviously they’re that busy nobody’s answering and you were left with, ‘Well, what do I do? Do we play it by ear? Do we kind of wait and see? What do we do?’” – Care home worker, England

Managing Covid-19 transmission

Throughout the pandemic, a key concern when people were admitted to care homes from hospital, was whether they might have Covid-19 and could spread the virus, putting people in the home at risk. However, contributors described how testing and communications about test results were inconsistent and this meant care homes sometimes received patients from hospitals without knowing whether they had Covid-19.

“

The first few weeks were quite stressful, in the fact that they hadn’t got a handle on testing patients before they moved them out of hospital and put them into step-down care where we were. Therefore, there was lots of uncertainty with patients coming in, are they going to spread Covid around further? It was the mismanagement of that, so that was quite an unsettling feeling.” – Healthcare worker, England

Care home staff also told us that in the early stages of the pandemic, hospitals were not testing people for Covid-19 before discharging them to care homes.

“	That was a big problem at the beginning, the fact they just emptied hospitals and didn’t test anybody. I think even if they had, they had no facility to isolate them anywhere at that point.” – Physiotherapist working in a care home, England

Some contributors working in care homes told us about test results that were not recent enough to be accurate. This left them feeling that hospitals were trying to free up capacity by transferring the people to care homes. There was a perception that, as a result, people were not always tested at the time of discharge.

“

We would be told verbally that they’d been tested, but they would come back and the date would be wrong on it. It wouldn’t be the correct discharge date on. So, if they had the test 32 days before, on the discharge they would say, ‘Yes they’ve had a negative test’. But it wouldn’t always be on the day of discharge.” – Healthcare worker, England

“

The hospital would say they didn’t have it. Then when they literally come through the door to us and we would test them and they would be positive for Covid. I believe that the hospitals couldn’t manage the amount of patients they had, so it was easier for them just to let the residents go back to their care homes and leave the carers and the nurses to deal with them.” – Registered manager of a care home, Wales

Sometimes there was confusion over results and hospitals provided an updated positive result after the patient had already been admitted to the care home.

“	I remember we got a phone call from a hospital at 2:00 in the morning to say, ‘That person that we sent them back and their test was negative. They’re actually positive’.” – Care home worker, England

“	We got this person that was admitted to our home, we were told ‘He’s been tested, he can come into the home’. Then we got a phone call from the hospital saying, ‘Oh, by the way, we did testing but he’s actually tested positive’.” – Registered manager of a care home, England

In other instances, care home staff said they received discharged patients when they were known to have Covid-19 but there was no alternative but to take them.

“	I remember one of the care homes that we look after as such, they didn’t have any Covid positive patients in. They had to accept a Covid positive patient. They were forced to take on this one person…and then they lost 36 residents.” – Healthcare worker, England

“

Decisions were taken completely away from myself, from management. We got told by the company owners that if we had a spare room, the hospital needed the space. They were shipping people from the hospital into care homes until they could find somewhere for them to go…so we had no control over that whatsoever. When I used to get a phone call in the middle of the night to say, ‘There’s an ambulance going to be coming in and bringing somebody in who’s Covid-positive’, I had no say in the matter. We had to take them in.” – Registered manager of a care home, England

We also heard examples of family members having to arrange for testing themselves as testing was not provided. 

“	She went into hospital once, not for a long stay. I insisted on her having the tests before her discharge. I had to provide the test kits for her to get checked. They just said it wasn’t their policy to test. That she wasn’t showing any signs of Covid.” – Loved one of a care home resident, Scotland

When loved ones knew that other residents had been discharged from hospital into a care home, they were extremely worried about them having the virus and spreading it within the home. Some contributors told us about the toll this worry had on their own physical wellbeing, for example, disrupting their appetite and sleep.

Nicole’s story Nicole lives in Aberdeen with her family. Her mother and father, Colin and Christine, lived in a private care home a short drive from her. Colin and Christine had lived in the care home for a few years before the pandemic. They were both very sociable and active, they were keen gardeners and took part in many of the activities offered by the care home. When the pandemic started, the care home brought in visiting restrictions and infection control measures which reassured Nicole and her parents. The home had a communal lounge on each wing of the building, which was kept open to allow some mixing between residents.  In early April 2020, Nicole received a letter from the home advising they would be taking patients discharged from hospital. This made her and other families feel very angry and fearful that this would lead to the virus spreading in the care home and they quickly moved to protest against this decision.
“	We got a letter from the care home on 8th April advising that they were taking patients that had been discharged from hospitals. The families protested. The decision was reversed within 48 hours. The letter says that the care home was asked to do this by the local NHS. We got another letter on 10th April saying that, in response to relatives’ concerns, they would not take patients discharged from hospital.”
Nicole was relieved that the home would not be admitting anyone from hospital. However, later in April she received a call to say her dad was not feeling well and tested positive for Covid-19. He was admitted to hospital and three hours later Nicole received a call from the hospital to say they did not think he would survive. Colin sadly died at the beginning of May.  Colin’s death was very difficult for the family. Later on in the pandemic, she was told that the care home had accepted people discharged from hospital in early April without testing them for Covid-19.
“	I discovered through public health data nine patients had been discharged to the care home between March and May, five of whom were not tested and at least one tested positive. Only 10% of the care homes beds were occupied, I think they caved at the expense of my parents and other residents.”
Nicole and her family were deeply distressed and very angry about what happened and are still struggling to come to terms with it.

Where care homes accepted new residents who tested positive for Covid-19 at, or soon after admission, this was sometimes regarded as being the reason for outbreaks in the home.

“	And at this point, this guy [who was admitted with Covid-19] was already in our home on a dementia unit. And of course, once he got onto that dementia unit where everybody’s mobile, it just spread through the home like wildfire.” – Registered manager of a care home, England

Given the risks around Covid-19 transmission, care homes took steps, where possible, to isolate those who had been discharged from hospital and to implement measures which would protect other residents, in case the person being discharged was Covid-19 positive. The topic of Covid-19 testing within care homes for staff, residents and visitors is covered in Chapter 5 on PPE and infection control measures.

Timing of discharge from hospital into care homes

Before the pandemic, care homes would receive advance notice that someone was being discharged to the care home. Some health and social care professionals said that during the pandemic the discharge process was smooth and similar to how things worked before. For instance, some community nurses would be notified about expected discharges the day before.

“	I think we just had our usual discharges, like, they were just letting us know the day before that they were being discharged.” – Community nurse, England

However, a more common experience during the pandemic was poor communication between hospitals and care homes. Hospital discharges were frequently completed within a few hours and, in some cases, residents arrived at a care home by ambulance without any prior notice.  

“	Sometimes we didn’t even get notified that they were being discharged, they’d just turn up with an ambulance…there was a big lack of communication with the hospitals.” – Care home worker, England

These shortened timeframes put significant additional pressure on already stretched care home staff. They were forced to act quickly, often without enough time for infection control measures or to ensure they could meet the needs of incoming residents. This was hugely stressful for staff and put those with care needs at potential risk.

“

It varied really, sometimes no notice, sometimes half-an-hour, sometimes we’d get a couple of hours’ notice, but still it wasn’t enough time to prepare the staff team and where we were going to put them. We didn’t have time to do all the touch-point cleaning and the steaming that we had to do in all the rooms and decontamination.” – Care home worker, England

“

People were in a much more vulnerable position because there was pressure on social workers like myself to complete hospital discharges in two hours instead of our usual 48 hours. Nobody seemed to care about the possibility of infecting care home residents, or whether they even had appropriate care to go home to. It was extremely stressful.” – Social worker, England

Covid-19 infection control

Where loved ones helped people to move between the hospital and the care home for appointments or treatment, they saw infection control measures for themselves and found these reassuring.

“

I went to pick her up from the hospital. I had to wait in the car and then they brought her out. The hospital said it wasn’t their policy to test on discharge if she wasn’t showing any signs of Covid. When we got back to the care home, she had to do the tests and then she got readmitted. Again, straight back into her room and isolated. I liked that they did that.” – Loved one of a care home resident, Scotland

However, some people with care and support needs had to face long isolation periods once they were discharged to care homes. Staff worried about the impact this had on residents’ mental health.

“

They would have been tested in the hospital, cleared there and then when they came back here, they had to isolate in their room. Which, again, is a little bit restrictive. So, they’ve been cleared of Covid, they’re not Covid-positive, and they have to stay in their room for a week. Which is horrible, if you think about it. Horrible. And that wouldn’t happen in [the] community. You wouldn’t say go home and don’t go out again.” – Care home worker, England

“

It was really difficult because we were expecting them to be kept in hospital until they weren’t contagious. So, they were coming back still testing positive and for somebody to come to a home where we didn’t have the facility to have that isolation, that was a problem as well, so we tried to isolate people within their own rooms, but that further impacted on their mental wellbeing.” – Care home worker, England

Care home staff faced additional pressures due to infection control measures and efforts to ensure the virus was contained.

Abigail’s story Abigail is the registered manager of a care home in Southeast England. She has worked at the care home for over 20 years. During the pandemic, due to pressure from the local hospital, her care home accepted residents without knowing whether they had tested positive for Covid-19.
“	It was supposed to be that we couldn’t accept them if the people came with contamination, but the hospital said I had to.”
This created additional challenges, as Abigail had to implement strict infection control measures, including sterilising all items used and carefully handling potentially contaminated materials.
“	I had to take the precautions, we prepared a tray with everything that was needed and this was used for that person and they put in hot water, sterilised everything for them and put everything separately. I had to do the washes separately.”
Staff were allocated responsibility for specific floors of the care home to prevent the spread of the virus.
“	We had allocated floors, we had a member on each floor, you’d stick to your floor that whole shift.”

In Chapter 5 (PPE and infection control) and Chapter 6 (Staff shortages and how care was delivered) we explore infection control measures and their impact on care home residents and staff in more detail, as these issues did not just affect people at the point when residents were admitted into care homes.

Care home capacity and suitability

Staffing capacity

Care home staff felt pressured to accept people discharged from hospitals despite having limited staffing capacity. This pressure was particularly strong for existing residents returning to the home. 

“	As a care home manager, I was under constant pressure to admit people from hospital with phone calls and emails several times a day. Phone calls were often hostile and threatening.” – Care home worker, England

“

At that point, because everywhere was so under pressure and we were being told, ‘Well, they reside in your home, that’s where they need to be, they’re fit for discharge, we need the bed, you need to take them back’. So, you didn’t really feel like you could [say no].” – Registered manager of a care home, Northern Ireland

Similarly, social workers and community nurses described feeling unable to say no to requests for discharge support even if they were at capacity. This put a strain on already stretched staff resources, causing considerable stress. Combined with loved ones taking out their anger about these situations on them, this placed healthcare staff under great emotional strain.

“

We couldn’t say no. They were coming home and they needed us. So, the case load before Covid was about 510. During the peak of Covid, we were at 650 plus, we get faxes or emails sent to us. We just get, ‘Mr Smith’s been discharged to Smithy Care Home today. He’s tested Covid positive. You need to care for this, keep an eye on his general observations. Thank you, bye’.” – Community nurse, England

“	People were so angry because of the situation. One woman literally screamed at me over the phone on several occasions because her dad was being discharged from hospital and I couldn’t get the services for him. I could not sleep for nights afterwards.” – Physiotherapist, England

Contributors felt that residents being discharged into care homes that did not have enough capacity lowered the quality of social care they received.

“	He was discharged into a ‘care’ home. They were understaffed and not able to meet his needs. One day we went to visit at 2pm. He was unwashed and unshaven in bed with dirty fingernails and sores on his heels.” – Loved one of a care home resident, England

Care home suitability and specialist expertise

To free up bed capacity in hospitals, people with care and support needs were sometimes discharged into care homes. Limited capacity in hospitals and care homes meant people with care and support needs were sometimes discharged into care homes that lacked the appropriate staff or expertise to meet their needs. Contributors working in care homes sometimes felt pressured to accept new residents even when they did not have the right information or expertise to care for them. This led to real concerns about resident safety and the suitability of the care they could provide. Contributors told us how these care homes would probably not have accepted these residents outside of the pandemic.

“

Due to no beds and then a Covid influx coming in and taking over that ward, the patient with heart failure was being sent home because they didn’t have Covid. We’re taking [a] patient that has heart failure to a nursing home that’s not equipped with that team of people.” – Care home worker, Northern Ireland

Disgrifiwyd y cyfranwyr examples of care homes that could not provide specialist care after discharge. In some cases, people had to be cared for at home rather than return to the care home.

“

She was moved out of hospital and into a care home because of the government policy on moving elderly patients out of hospital. The treatment my gran received in a care home versus the clinical care she had been receiving in hospital was clearly not the same and she declined rapidly.” – Loved one of a care home resident, England

“	My mother was also in a chaotic, scared and unprepared private care home. I brought [her] home during the pandemic, when her life was considered to be at the palliative care stage. Her care home had refused to allow her back on discharge from hospital.” – Unpaid carer, England

We also heard how some residents requiring specialist care lost their place in the care home while they were in hospital and had to be transferred to another care home on discharge. If the new home was less suitable this made providing high quality care more difficult. When it was in a different place this sometimes made it harder for loved ones to visit. Contributors were frustrated and disappointed about these decisions and their lack of involvement in the process.

“

He lost his slot [in the specialist care home, because the hospital] didn’t know how long they’d have to keep him in. So, he got moved and the only appropriate one that they could find was 25 miles away. We kept on asking social services, ‘Can we get him moved closer to his home?’ [But] it never happened.” – Loved one of a care home resident, Wales

Deciding who was discharged to a care home

Some people with care and support needs told us how no one had told them they would be discharged into a care home. We heard examples of people with care and support needs expecting to return home and instead being discharged into a care home. This was a very upsetting and unsettling experience.

“

Well, apparently, I didn’t have any say in the matter really. The hospital just sorted it out. I don’t know…I came back and the social worker was involved with me. And I was booked to come out and we’d been waiting and waiting for an ambulance and in the end, she said, oh, I’ll take you. So, she brought me here.” – Person with care and support needs, England

“

I didn’t really want to come here, no, I wanted to go back home really. They didn’t talk to me about it at all. They just said, ‘You’re going home today’, and I thought we were going to the house and they said, ‘No, you’re going to [care home]’. They didn’t discuss anything at all, they just sent us here.” – Person with care and support needs, England

Loved ones of care home residents who were hospitalised told us they were not always involved in decisions about care after leaving hospital. Some loved ones were given little notice about people being moved from hospitals into care homes. Others were not informed until changes had taken place so by the time they understood the implications it was too late to make alternative arrangements. Contributors said they found it incredibly upsetting, leaving them feeling powerless and often angry.

“

Once they [moved her into the care home], there was no going back. She went into care then and never came out. I think it would have been a lot different for us if we had known the process and the limitations, and how difficult it actually was [to visit her], I think it would have been a lot different for us.” – Loved one of a care home resident, England

“	The hospital rang me to say mum could not be discharged to her home, because [they were] unable to provide [a] home care package because of Covid and that she would be put into a care nursing home.” – Loved one of a care home resident, England

Contributors found the move into a care home was not only difficult at the time they were discharged but also caused problems later when they wanted to leave the care home for a different care setting which they considered was more suitable for their needs.

Mary and Alfie’s story Mary and Alfie have been married for 49 years, they are both in their 80s. At the start of the pandemic, they lived in their own home in the Midlands and for many years Mary cared for Alfie, who had limited mobility. In the first lockdown their health got much worse and Mary needed a neighbour’s help when Alfie fell over.
“	He fell on the floor four times and I had to keep calling a neighbour up the road to come and help me. I couldn’t lift him, you know, so the chap had to come down four times, I had to keep ringing him, to pick him up. So yes, no care at all, none.”
However, as the pandemic went on people were more cautious about helping and they had no family to support them. While supporting Alfie to climb the stairs one night, Mary slipped and broke her ankle and Alfie hurt his hip.
“	When he went up the stairs, he couldn’t get up the stairs properly and I fell down the stairs, broke my ankle, you know, he had no care at all, with just me.”
Mary was able to call an ambulance and after several hours both were taken to hospital for treatment. They were also put in touch with the local authority so they could be supported by a social worker.  After a few weeks in hospital, Mary was told that she and Alfie were being moved to a care home. This was the first time she had heard about this and wanted to go back to their home, but she was told there was no other option. Their social worker was also unaware of this move.
“	I came from the hospital straight here. They sent me straight here … They didn’t discuss anything. They just said, ‘Oh, you’re going home today to [Care home]’…they didn’t discuss the price or anything here at all…I didn’t really want to come here, no, I wanted to go back home really, nothing like your own house.”
Since they moved into the care home Mary and Alfie have not been back to their own home. Although they have received good care at the care home over the last few years, Mary and Alfie are now trying to find a place in sheltered accommodation.
“	I shouldn’t have been here [in the care home] this long because I’ve been here nearly three years now and Alfie’s been here nearly three years as well. Well, we saw the social worker today, to find us a sheltered accommodation and she’s looking into it now. She’s looking into it. She [the social worker] said, ‘You shouldn’t have come here in the first place’. I said, ‘Well, the hospital sent us, you know’. They said, ‘You’ve got to go here’.”
Mary is very concerned that the care home costs £900 per week each for her and Alfie and hopes that a move to sheltered accommodation will be cheaper, as well as enabling her to live closer to her brother.

4. End of life care and bereavement

Approaching end of life

End of life care is support for people who are in the last months or years of their life. It aims to help people live as comfortably as possible in the time they have left and to die with dignity. People can receive end of life care in their home, in a care home or in a hospital or hospice.

We heard how people with care and support needs were isolated and alone during the pandemic. When they also struggled to access support from family this often had an impact on their physical strength and wellbeing. This meant family members and social care professionals saw the health of people with care and support needs deteriorate and they often felt they approached the end of their life sooner than expected.

“

We saw a lot of them deteriorate. Definitely you’ll see people who went out every day, even if it was just into the garden, or seeing their family every day, literally losing their will to live. And we had a lot of people that passed away because of that. And it wasn’t because we weren’t trying…it was hard. It really was hard.” – Care home worker, Scotland

“

My father went into a care home not long before the pandemic with advancing dementia, he couldn’t be cared for at home. We were not allowed to visit him for around 6 months [once he was living in the care home] he deteriorated rapidly over the 6 months […] and died before we got to see him.” - Bereaved family member, England

People approaching the end of their lives also faced barriers in accessing health and social care services. Contributors told us how people’s health worsened when they did not get the help they needed early enough.

“

A lot of the times, I think it was due to the fact they hadn’t been able to get in touch with other services like their GP. They hadn’t been able to get in touch or it had been delayed or not available…a lot of the feedback from the families was [that] they tried everyone else, and they had to call the ambulance service because there was no one else available to help them.” - Paramedic, England

Some people with care and support needs felt worried and low due to lockdowns and isolation. This sometimes meant they refused to eat or drink, worsening their health further (these experiences are explored in detail in Chapter 2).

“

We had one resident who would walk around his room or in the lounge area constantly. When he was tired, he would lay down on the floor and curl into a foetal position with his eyes closed until he got up and started again. We tried to encourage him to eat, drink and take medicine but he would decline it by turning away, spitting it out or [becoming] aggressive. After a few days of this, he deteriorated quickly [and] he was in bed on end of life care.” – Care home worker, England

Most family members and unpaid carers said they were kept updated about how their loved ones were doing and when the person they cared about started to receive end of life care. However, this was not the case for all family members and unpaid carers. This meant some contributors were shocked and upset when they found out the person they cared for was near the end of their life.

“

She was in sound mind when she went into that home, all she could do was she couldn’t use her legs… And within the time she was there to the time that Covid hit, and she was confined, when I went in when they thought she was dying, she was unrecognisable… She’d lost so much weight, she was lying on the bed, her eyes were closed, they’d open but she could only just mumble stuff. I mean I don’t want to blame the home…but you just don’t know what happens, once you are not allowed in and you’re not seeing and you’re not there, you don’t know. And I don’t think they’d had the staff to sit down and make sure she ate or drank or spoke to her.” - Bereaved family member of a care home resident, England

Stories from Cardiff We also heard similar experiences at listening events in Cardiff.

“

The last conversation I had with the care home was to advise me my mum had died…I knew she was unwell, but it was very non-specific, just said she was sleeping a lot. We were in lockdown, I hadn’t been able to visit my mum in over four weeks so I had no idea what happened, at the time I was reassured and felt she would be safe as there were no visitors but that turned out not to be the case…I’ve only recently started chasing up for the care home notes and I still haven’t had them…She was in a part funded home and the only correspondence I had was them chasing for my mum’s payment.” – Bereaved family member of a care home resident, listening event, Wales

Other contributors told us how the person they cared for had been living with terminal health conditions such as cancer or liver failure. In these circumstances, the family and person with care and support needs had prepared for end of life care. However, people often changed their plans because pandemic restrictions on visiting in hospitals and care homes meant that these plans no longer worked for the person they cared for.  For example, some contributors had intended to receive care in hospital but found the idea so upsetting that their families decided to care for them at home. Other people refused to go to hospital at all. The uncertainty and last minute changes to end of life care plans was very stressful for many family members and unpaid carers.

“

My dad and my mum found it traumatic being separated and he couldn’t cope with being treated by people who he described as being ‘without faces’ (e.g., wearing masks and visors). So, he came home for end of life care and was cared for 24 hours a day by my mum. Unfortunately, this was too much for her to manage, as he needed someone with him at all times and it wasn’t possible for her to sleep.” - Bereaved family member of someone receiving domiciliary care, England

“	He wanted to stay home. He told me he didn’t want to go to hospital. He was frightened to go. My parents had no support looking after him at home, they broke the rules to give him the end of life care he needed.” - Bereaved family member, England

Amit’s story Amit lives in Northern Ireland and during the pandemic he provided end of life care for his dad, Rohit and cared for his mum, Priya.  In 2018, Amit’s mum had a stroke and his dad was her main carer. However, in March 2020 Rohit was diagnosed with cancer. His diagnosis was a major shock for the family. Rohit’s illness meant that Amit and his siblings had to take on caring responsibilities during the first lockdown.  Amit’s mum had very little mobility and she required around the clock care, so Amit moved into their home to care for Priya and Rohit.
“	I was responsible for every meal to be cooked – breakfast, lunch, dinner, snacks, the grocery shopping of that and then the cleaning of the apartment. My mum was not even capable of making a cup of tea, so, everything had to be cooked, cleaned. She was incontinent as well so we had to change sheets and put pads on her and then bring her to the toilet during the day and at night we would often have to get up in the middle of the night.”
Rohit’s health also deteriorated quickly. Before the pandemic he swam three times a week and walked miles every day, but within six weeks he was unable to walk. Amit and his siblings were suddenly faced with providing end of life care with very little support from health and care services.
“	The hospitals basically said here, they sent Daddy home and they just said, ‘There’s nothing more we can do for him and if you don’t take him home now he’ll die in the hospital because we’re locking down the hospital’. And that happened a few days later where no one could get back into the hospital again. So, we had to take him home and care for him. But we did say, like, we didn’t know what we were doing and no one was there to help us. The Marie Curie nurse came twice, but again I thought, ‘Is she not supposed to come every day’ or because obviously it’s something new, we didn’t know what was supposed to happen. So, we do feel that we were just left, because we felt like, ‘Oh my god, the pandemic had just happened and everybody’s resources went elsewhere’. I remember when Daddy was dying and thinking, ‘Why are we here doing this on our own? Why is there not someone coming in and helping us? We don’t know what we’re doing. We don’t know how to look after a man dying’.”
Amit and his siblings did their best to care for Rohit and he died at the end of April 2020. Although Amit appreciated spending so much time with his mum and dad in those final weeks, he was left feeling angry and exhausted.
“	It was…traumatic, I would say grief and trauma and carers’ fatigue would be the words that I would use if I think back on that time and isolation and feeling alone a lot of the time with the care for our dying father and the care for our mother.”

Some contributors also told us about distressing conversations with health and social care staff when the person they cared about was approaching end of life.

Stories from listening events We heard from contributors at listening events around the UK about the difficult conversations around how best to care for people at the end of their life.

“

Sadly, there were some doctors that I don’t agree with. They were saying to me [about my wife], ‘don’t you wish it was all over and done with for her?’ I sat there looking perplexed because she’d been married twice before and when she met me, I took it [her illness] on like no-one else and she was worried I’d do [the] same thing as [the] first two [husbands], but I said ‘no I’ve made my decision I will stick by you now’. How can doctors say it [life] is not worth living – it is worth living – when she sees her boys, she has a big smile on her face.” – Bereaved family member of a care home resident, listening event, England

Access to services and support

Some family and unpaid carers found it difficult to get help with end of life care from hospital or community services during the pandemic. We heard distressing examples of not being able to arrange palliative care at the start of the pandemic, as providers tried to work out how to respond. 

“	From my experience I felt there was no end of life care in the community. The system failed during the pandemic.” - Community nurse, England

“	Nobody from end of life care came to see him [her husband]…the nursing home couldn’t take him…so it was left to us [to care for him…we only had this woman ringing up every few weeks, checking on his drugs.” - Unpaid carer, England

Loved ones and unpaid carers were left to provide end of life care themselves if they were not able to get professional help. When this happened, it had a devastating emotional and physical toll. Many felt angry and guilty they were not able to deliver the level of care needed. Family members and unpaid carers were distraught because of the pain and discomfort the person they were caring for experienced in their final days. Unpaid carers who provided end of life care explained how difficult it was to find the right type of equipment and medical products to help them provide care.

“

I got nothing when my husband was ill, nothing. He took ill just the first week of the pandemic and I couldn’t get any help at that stage, very difficult even to get a doctor, I think I had one visit from the doctor and I had to look after him myself and he became incontinent and I had dreadful trouble getting pads for him. I had to really fight for them over the phone to get them, just difficult but I managed to do everything and he died quietly in my arms on 8th May. It was COPD [chronic obstructive pulmonary disease] really and his heart, it wasn’t Covid-19.” - Unpaid carer and bereaved family member, England

We also heard from community nurses that providing palliative care was challenging due to medication shortages. As the pandemic progressed and services adapted, they thought end of life medications were being diverted and prioritised for hospital patients. This meant people at the end of their life at home were not receiving the treatment they needed and were in unnecessary pain.

“

Sometimes, you’d go to a patient that was struggling with their breathing. We didn’t have the medications, because there was [a] short supply, because they were going to the hospitals. So, as a community nurse, I felt very left out. Everything seemed to be the hospitals are getting it. So, we were running out of medications, so patients were passing away in pain, struggling.” - Community nurse, England

People working in care homes said they felt abandoned by their healthcare colleagues when it came to end of life care. This meant care workers had to provide care they had no experience or training in, as healthcare professionals were not visiting care homes in person. For example, some care home staff had to certify deaths and prepare people for undertakers, which they found very upsetting.

“

That was hard because nobody would come into the care home. So, you would have doctors completely refusing to come in, or if they did, you have to wait absolute hours for them to come and certify the deaths. The doctor would certify it, without touch[ing] them. Then we would call the undertakers. We were allowed then to wash the body. We weren’t allowed to clothe it.” - Care home worker, Wales

Care home workers found it distressing to see residents who had died not being collected and remaining in the home for long periods of time. Staff found the lack of dignity offered to residents upsetting, such as people being taken away and buried in their pyjamas to avoid the risk of Covid-19 transmission. These experiences continue to affect some care home workers deeply, with some struggling with memories of what happened.

“

Often, no doctors were available to pronounce the residents dead, so they would remain in their bedrooms for up to 15 hours. When the bodies were collected, the undertakers arrived in full hazmat suits, goggles, gloves and face masks. We were told to put our t-shirts over our faces in an attempt to mimic face masks.” - Care home worker, England

“

I was never trained to certify somebody dead, over Covid that was one of the things we did, was get all the managers certified that they could do it. They were having to be the hairdresser, be the make-up artist, they were making sure that the residents were sent away looking presentable, as you would if they were being an open coffin. Dealing with people who have died – one of my managers actually left after Covid, her PTSD was so bad. The mental health impact that it had on them was horrendous.” - Gweithiwr cartref gofal, Gogledd Iwerddon

Visiting and saying goodbye

Family members and unpaid carers faced the challenge of restricted communication and visits (as detailed in Chapter 2) during the pandemic. For people at the end of their life and their family, the limited opportunities to communicate led to very upsetting experiences, which some people said would stay with them forever. Care home staff told us how restrictions on visiting people receiving end-of-life care were particularly strict in the first lockdown. Social care providers were still learning about the virus and did not have guidance for how to manage visits.

Many contributors said they were not able to see the person they cared about at the end of their life in the first lockdown. Loved ones who were unable to visit continue to be deeply upset about their family member or friend being alone and isolated in their final days, even when social care staff were with them. Some bereaved families felt they might have had the opportunity to say goodbye had care homes communicated more effectively.

“

The carer [who called], she was quite new to the role and she didn’t really know how to put it. If they’d communicated better, we would have gone earlier to the care home [my wife possibly] could have been there when he [her father] actually went, rather than after the event.” - Aelod o deulu galarus preswylydd cartref gofal, Cymru

In the first lockdown, we heard how social care professionals organised video or telephone calls and provided updates via email. Loved ones told us the calls at the end of life were extremely upsetting and distressing.

“

For several months before his [father’s] death we had only been able to see him once a week for one hour via Skype calls. These video calls were exceptionally distressing as he had dementia and could not understand why we could not come to visit him anymore!” - Bereaved family member of a care home resident, England

“	We had our last video call…and then they put her on end-of-life care…that was on the Monday and she [her mother-in-law] died on the Saturday…it was really quite horrible.” - Bereaved family member of a care home resident, England

Social care professionals also shared how emotional and traumatic these calls were. Many staff stayed with the person they cared for until their final moments. 

“

We would give the family a call and say, ‘We’ve just had a nurse out to visit your mum. Unfortunately, the nurse has confirmed our suspicions, your mum is in the last few hours of life. When would you like us to phone?’…It was distressing and emotionally draining because we were trying to do everything we could for the person and their family…but there were times we had to think about staff mental health as well. The last thing they want to see is somebody absolutely distraught when you can’t put your hand on them and reassure them.” - Community nurse working for a domiciliary care provider, England

As the pandemic progressed, restrictions were eased so that family and friends could visit people in care homes at the end of their life. Loved ones were tested for Covid-19 before visiting and had to wear PPE when in the care home, hospital or hospice. We heard many examples of family members visiting people in their final days later in the pandemic. They appreciated the support of care home staff and were thankful they were able to have those final conversations.

“

We were so lucky because so many people didn’t get to [visit at the end of life and] have that opportunity, and our family are very grateful for that. But of course, that wouldn’t have been how it would have been normally, she would have been surrounded by a mass of people who loved her…obviously we were distraught at losing mum, but we would have been anyway, I think it’s that layer of guilt that will never diminish.” - Bereaved family member of a care home resident, Northern Ireland

“

I’m very grateful that they did at least let me be in there with her. I spent a lot of time there. I’d go mid-morning and just stay as long as I could. I remember turning up the last morning, the nurse on duty that day came out when I was doing my Covid test, and said, ‘Your mum hasn’t got long to live’, and I really appreciated that she did that, she must’ve known, and I guess prepared me for it.” - Bereaved family member of a care home resident, England

However, other contributors were more critical about how visits at the end of someone’s life were arranged. Each care provider organised visits in different ways. For example, some care providers limited the length of time family members and friends could visit or only allowed a limited number of people. Bereaved family members expressed how frustrated they were with some of the visiting arrangements at the end of life as they felt arbitrary, contradictory and at times cruel.

“

Mum was terrified of dying alone without me or one of her relatives there with her. However, I was only allowed to spend an hour a day with her so there was a high chance I might not be with her at the end. This felt arbitrary because surely once I was in the hospice it didn’t matter how long I stayed.” - Bereaved family member of a care home resident, England

“

My sons were really affected by it. It was horrible for them to look through the window and see their grandma dying and not be able to be there and speak to her. And for us [inside, distanced and wearing PPE], it was just horrible and clinical. And I felt anger.” - Bereaved family member of a care home resident, England

“	My mum, she doesn’t like being on her own ever, and she always liked company. So, to be put in your room on your own at the end…it was quite cruel actually when you think of it.” - Aelod o deulu galarus preswylydd cartref gofal, Cymru

Stories from bereaved families in Edinburgh, Ruthin and Belfast We also heard at listening events in Scotland, Wales and Northern Ireland about the frustration and confusion care home visiting arrangements caused for those near the end of their lives and their loved ones.
“	We couldn’t call or FaceTime because he is deaf, so we asked family to write letters and photos to keep him up to date. When visiting we had to explain to him that we weren’t able to come in, the first few times he gave us a smile and a wave, the last time we saw him at the window he wasn’t awake, we had no reaction or interaction, we were worried.” – Bereaved family member of a care home resident, listening event, Scotland
“	We were allowed window visits in the summer, but he didn’t understand why we were not there, he couldn’t walk. Would get very distressed, he wanted to die because he knew something was really wrong and pleaded with me to let him die, let him go.” – Bereaved family member of a care home resident, listening event, Wales
“	I wasn’t happy with the treatment and why they were saying I can’t come, it was very frustrating and very hard. I went to come and see her [after she was sent back from hospital], I saw the state of her. She died in the early hours of the next morning, I couldn’t understand why they did everything the way they did.” – Bereaved family member of a care home resident, listening event, Northern Ireland

For people receiving end of life care at home, we heard how some family members and friends broke lockdown restrictions to be with the person they cared for in their final days. They often felt guilty about breaking restrictions but thought it was necessary to help the person they cared for.

“

We felt we had to go in to see him [her father] more…so really, we broke the rules. I’m a stickler, I was very worried about it. My brother didn’t, but I was retired anyway, my husband wasn’t working, he said, ‘None of us are going out so we’re not mixing with other people. We’ll be careful’.…We just needed to be there for him at the end.” - Bereaved family member, England

Family members breaking restrictions was also difficult for health and social care professionals who were providing care in the home, as they knew it was against the rules but felt a huge amount of sympathy and compassion for the families.

“

You’d have families that were like, ‘Well, stuff it’. That sounds really awful. They sort of went, ‘Well, stuff it. My mum’s dying, I’m going to be at the side of her’. Because it’s their own home, we hadn’t got any choice. But again, you’re then putting yourself at risk because you’ve got people in that house that shouldn’t be in that house. But then, as a human being that cares, how are you going to then, you’re supposed to report it and say, ‘Yes, well, they’re not part of the bubble’, or whatever. But their mum’s dying. So, you’re not going to. It was strange.” - Domiciliary care worker, England

Delivery of care

End of life care was severely disrupted by the pandemic. Despite these challenges, domiciliary care staff, care home workers, community nurses and unpaid carers described the ways in which they tried to make people with care and support needs as comfortable as possible.

“

We would put on some really lovely choral music, and, she was, kind of, mumbling, and sleeping, and then she’d often reach out…she knew we were there…I was just sitting with her with the lovely music, and then there was just a point where she just squeezed her eyes really tightly, like, her whole body braced, and then she, sort of, like breathed out, and I knew that she’d died, I knew that was her last breath. And there was a singular tear that rolled out of her eye.” - Unpaid carer, England

“

We always made sure we had one person who’s sitting with them, one of the nurses from the hospital, or support worker. We used to come and visit, it was more like [an] emotional, social visit than actual physical care, because obviously they were on their deathbeds and they didn’t see their families. So, we’ve been there to help them deal with it really.” - Domiciliary care worker, England

Contributors told us about very different experiences of end of life care. Some people received excellent care including ongoing and helpful advice from district nurses and palliative care nurses.

“

We had the support of the district nurses which was fantastic. They were coming around every day for the first couple of weeks, advising us and giving medications [including ‘just in case’] end of life medication which would ease her suffering [if needed]. I did feel we were pretty well supported.” - Bereaved family member, Wales

This additional support helped to provide some respite to unpaid carers and loved ones, although some found it hard to cope with the sudden presence of extra people and noisy equipment in the home. Other loved ones were surprised to find support was more limited. This included care workers only being available in the daytime or a requirement for people to be moved to a hospital bed at home to receive care, which was not always possible. This meant some family members and unpaid carers continued to shoulder some or all of the burden for providing end-of-life care.

“

The carers said that because he was not in a hospital bed they can’t come anymore and do anything [for health and safety reasons]. He had prostate cancer, affecting his spine and I’d been told that if I move him, it’s going to kill him. So that was a bit of a kick in the teeth… And not having support at the end was shite, but I just got on with it as I always have.” - Bereaved family member, Northern Ireland

“

The doctor did not come. He said there were no carers available for end-of-life care. The ambulance said my brother and I shouldn’t be doing this, but they said if they took my mother to hospital, we wouldn’t see her again. The locum doctor and district nurse from another county were excellent, we phoned a helpline, somebody had to help us.” - Bereaved family member, England

Bereaved family members were affected by how their family member or friend was cared for at the end of their life. Some contributors said the care provided went ‘above and beyond’ what they expected. Where care was more compassionate and personalised, taking into account specific needs, this was reassuring and comforting.

“	Every [shift change] they always came in to say goodnight to him or good morning. Some of them asked could they pray with us for him. The nursing staff were so caring, they were more than great.” - Aelod o deulu galarus preswylydd cartref gofal, yr Alban

“

The care home phoned my sister to say, ‘Get your family and come down, we think your mum’s at the end of life’. That was really good, because it showed compassion [and that] they were aware of what was happening with my mum. They were caring and so I know mum was very comfortable when she went.” - Aelod o deulu galarus preswylydd cartref gofal, yr Alban

Other bereaved families felt let down by end of life care. Some contributors told us how a lack of sympathy and understanding from care workers was immensely upsetting and caused anger and additional stress for bereaved families and unpaid carers.

“

My mum in the days when she was dying was becoming less lucid, more delusional and that happens you know. We had people who would care for her at night and sometimes one in the day. The woman who came in for the nights, she couldn’t have cared less, she was meant to come and get me if my mum needed any medication or call the district nurse. She did not do any of that. In the end, the carer [was] just basically arguing with me right in front of my mum, I had to say ‘can you please lower your voice in front of my mum?” - Bereaved family member, England

“

The carer who was doing nights on the night he died, she didn’t leave us alone…[saying] things like ‘You don’t have to talk to him all the time’, ‘Oh, you can close that window’. She wasn’t the usual person. She must have come from outside, but we were very disappointed in that [the carer’s attitude].” - Bereaved family member, Wales

Social care professionals also felt the pain and distress of being with someone when they died, particularly when they were there because their family and loved ones could not be.

“	It was horrible, we were the ones sat there, holding their hand as they were dying. We were the ones ringing family to say, ‘Your mum’s passed away this morning’.” - Domiciliary care worker, England

Fatema’s story Fatema lives in Birmingham and has been working in domiciliary care for several years. During the pandemic she cared for several people who were coming to the end of their lives.  The people Fatema cared for were visited by a nurse from the local hospice who administered medications and made sure they were comfortable. Fatema felt the people she looked after were safer receiving care in their home compared to going to a hospice or hospital.
“	They would come once or twice a week and bring all the equipment with them…they trained family members and a few of us carers how to use them to help with breathing.”
The nurses from the hospices trained her and the unpaid carers on how to use some equipment to help people feel more comfortable as they died. This included an oxygen machine and a suction machine to help with breathing.  Fatema would assist with video or telephone calls so people could talk to their loved ones which she found very emotional. Fatema and her colleagues also cared for people at the end of life who did not have any family.
“	One or two of the clients, they had no one, they were lonely. No families, no one. Only the carers and the care agency. So, we used to take extra care when we went there, we used to check the file, who has been visited, who hasn’t. If there were any concerns, we would call the hospice nurses.”

Health and social care professionals also reflected on how important the end of life care they offered was. They greatly valued messages they received from families and friends of people they had cared for.

“

Admin would follow up with phone calls and sometimes they would send a card signed by staff or, later, written by the organisation to the family and so on…we were getting responses from the families thanking the whole staff for the care that they were giving. I was surprised [at] that time that we received more compliments than ever…you could see that the whole community values what you are doing.” - Care home worker, England

We also heard how nurses would work extra hours to ensure residents were not alone at the end of their life.

“	It made you want to try and be there, nobody wants to spend that last period of their life alone. So, people [healthcare staff] would cover, or stay longer.” - Community nurse, England

“

I remember going into a care home, the staff and residents terrified and a 92-year-old lady dying alone. We didn’t know if she had Covid, but staff were too scared or not allowed to stay with her. I lay on her floor for hours with her, because as a nurse it’s what you do: you put your patients first and think about yourself second.” - Community nurse, England

However, seeing so much death and not always being able to offer the care they wanted to, also left some social care professionals questioning their professional abilities. They found it hard to get a sense of fulfilment from their work when they could not offer the dignity and care they usually would.

“	You get no job satisfaction from that [end of life care] at all because you feel, even though you’re not individually failing the person, your service is. And I found those things [lack of staff resource for end of life care] very difficult.” - Nurse working in a care home, Scotland

Use of DNACPR notices

Family, friends and social care professionals also discussed the role of DNACPR³ notices. DNACPR notices record decisions taken by the patient and/or doctor to indicate that healthcare professionals should not attempt cardiopulmonary resuscitation (CPR) if the patient stops breathing or their heart stops beating. These decisions should be made on an individual basis, meaning DNACPR notices should not be applied to groups of people based on characteristics such as age, disability, or residence in a care home. 

Some contributors were aware the person they cared for had a DNACPR in place. They could understand why this was needed, as the person with care and support needs was often in poor health and prolonging their life would lead to more suffering. Nonetheless, it could be very difficult for family members to accept.  

“

For me, my dad had a DNACPR notice. So, for me, it was very much like, well, because of his abilities, he’s not to be resuscitated because he would just become even less of a person, a lesser man…It was one of the hardest things to let go of control of my dad’s needs at the end.” - Bereaved family member, England

Other contributors said conversations about DNACPR notices were handled inappropriately and insensitively during the pandemic. This caused great upset and anger for people with care and support needs and their loved ones.

“	My grandmother called me [in] distress at being told by the Dr about the DNACPR and that they won’t resuscitate her. I was angry that there was no compassion or dignity given to my grandmother and she had to endure this alone.” - Loved one of a care home resident, Wales

We heard reports of DNACPR notices being applied across a care home or to people with a particular type of health condition such as dementia. In some cases, family members, friends or care staff challenged DNACPR notices. 

³ To read more about DNACPR decisions see the NHS website: https://www.nhs.uk/conditions/do-not-attempt-cardiopulmonary-resuscitation-dnacpr-decisions/.

“

Gwrthodais pan ddywedon nhw, ‘Rydyn ni’n mynd i roi DNACPR i bawb’, a dywedais i, ‘Dydych chi ddim o gwbl’. Bydd fy mhreswylwyr yn gwneud y penderfyniad hwnnw drostynt eu hunain. Dydych chi ddim yn mynd i orfodi hynny, felly peidiwch ag anfon unrhyw un yma oherwydd dydych chi ddim yn gwneud hynny. Gofynnais y cwestiwn. Gofynnais y cwestiwn i bawb oherwydd pwy a wyddai beth fyddai'n digwydd, ond ni fyddwn yn gadael i neb ddod i mewn a gwneud hynny” - Rheolwr cofrestredig cartref gofal, Lloegr

“

As lockdown started being discussed, the priority of the GPs for the care homes was to move all residents onto DNACPRs. At no point was there any discussion on best ways to support or treat residents with Covid. Blanket DNACPRs rather than asking ‘how will we treat people?’ There were NO treatment plans in place.” - Bereaved family member, England

“

People’s human rights went out the window, so did the Care Act and Mental Health Act. Local authorities applied the law in different ways, some disregarded the law completely. One local doctor rang round families just to say they’ve put a DNACPR on their loved one because of a learning disability or old age, having never even met the people.” - Care worker, Wales

Others suggested that healthcare services were prioritised over social care services and the main focus was to protect the healthcare system.

“

Fit was at [a] local level, as far as I can see, that people were deliberately misinterpreting…DNACPR notices. ‘They don’t want CPR’, yes, but that doesn’t mean they don’t want antibiotics. My own stepmother refused to have one for a long time, because she saw that as a means of not taking her into hospital if she had something wrong with her and I couldn’t actually argue with her, because I was seeing that that was happening. There was no edict, this was just, ‘Protect the NHS at all costs’. Yes, fine, but it wasn’t actually closed. The attitude locally and the communications, almost was, ‘You are solely responsible for protecting the NHS’, and that was the communication issue.” - Community nurse, England

We also heard from GPs and community nurses who shared the pressures they were working under and the considerations they had to make when assessing the need for DNACPR notices. 

“

I work as a GP in Scotland. We started telephone consultations with daily meetings with the health board about preparing for the collapse of the NHS. We were advised to speak to elderly patients and warn them about Covid and ‘offer’ DNACPR. Patients were still being discharged from hospital to nursing homes as the concern [was about] the collapse of the hospital system. It became a surreal nightmare overnight. We were warned that major hospitals will bring in a traffic light system and if you were red or amber on the Covid scoring system, you were likely to not survive. Age over 65 was one of the parameters.” - GP, Scotland

“

At the beginning of the Covid outbreak I was employed as a Community Matron, working with patients in their own homes with long term conditions and end of life care. This included working alongside carers employed by social care agencies who cared for my patients…Part of my role was to have end of life planning discussions with patients and their families…Before long I was asked to see a number of patients…My task was to explain to them that should they deteriorate, admission to hospital would not be considered and they were encouraged to have DNACPR. This would mean that should they deteriorate, only comfort measures would be used.” - Community nurse, England

Family members and unpaid carers told us that communication about DNACPR notices, how they were used and the implications for treatment caused confusion, distress and anger. Some thought the person they cared for was denied treatment or interventions, contributing to concerns about the quality of care and respect for individuals’ wishes in their final moments.

“	I was very late in finding out that a DNACPR form had been signed. My partner was placed on Morphine and Midazolam, had all water [and] food removed, was kept semi-comatose until he died. The medical notes contain some ridiculous and impossible statements.” - Bereaved family member, England

“	The thing with DNACPR is most people think this means no resus, but in this context [Covid-19 in the care home] it meant no treatment, no fluids, no food.” - Every Story Matters contributor, listening event, Northern Ireland

Hearing stories of DNACPR notices being used to withhold treatment during the pandemic caused huge distress and uncertainty for some families. This led to some unpaid carers changing care arrangements for their family member.

“

My son, who has Down’s Syndrome and was aged 24 at the time, was living in a supported living placement prior to Covid. I could foresee a risk to his life and I moved him back into our family home. An automatic DNACPR policy left me so fearful in case my son caught it, was taken into hospital alone but unable to communicate as he is non-verbal and was left to die.” - Unpaid carer, England

ReSPECT forms

Contributors also discussed the use of ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) forms⁴ at the end of life. ReSPECT forms are used to establish personalised recommendations for a person’s care in a future emergency where they are not able to make decisions or to express wishes. The process is intended to respect both patient preferences and clinical judgement. 

Families and social care staff raised concerns about how ReSPECT forms were interpreted during the pandemic. For example, some social care professionals thought the plans affected what medical treatment a person was offered. In other cases, loved ones felt that the ReSPECT forms did not provide enough detail about what treatment was required. 

“

It’s been a longstanding issue, that ReSPECT forms are put in place but not always filled in…some can be very basic, give you limited information. Here we have an advanced nurse practitioner from the GP surgery does a review with new residents and she completes a new one when they come. But we tend to find the ones from the hospital, on occasion, residents didn’t know that they were in place, they’d said that they’d not been consulted with them. And a lot of them just gave you the basic, limited information that wasn’t really very helpful.” - Care home worker, England

⁴ To read more about ReSPECT forms see the Resuscitation Council UK website: https://www.resus.org.uk/respect/respect-healthcare-professionals.

We also heard instances where early on in the pandemic ReSPECT forms were given to care home residents without any discussion. In one example, staff and residents were not aware of this until a local council audit later in the pandemic.

“

At some point early on, October 2020, there were just blanket ReSPECT forms done for everybody. They would literally just fill these forms out for the person and automatically decide, so everybody over a certain age was automatically decided, deemed, to not be worth reviving…We had a council audit, I forget when this is, going back probably 2021, and the council auditor, lovely guy, checking all these different things out and spotted that every ReSPECT form had no comments, or no signatures from residents. They were effectively just-, they were just filled in, just blanket forms, yes.” - Rheolwr cofrestredig cartref gofal, Lloegr

Contributors were very angry and upset that decisions about ReSPECT forms were made without residents, their family members or staff being involved. Care home staff felt discriminatory attitudes towards older and disabled people led to these decisions. They shared how helpless they felt when they found out and were particularly concerned that they had not been given the chance to advocate for residents.

“

That had a mental impact on me. A very big one. And I’ll be honest with you, there is a lot of them I was in tears over. Absolute tears. These calls for the ReSPECT forms were done all over the phone and to see residents that we care for being told that they weren’t going to get any treatment because of their age, or disabilities or anything, it was just heartbreaking. That was the most traumatic.” - Care home worker, England

Experiences of loss and bereavement

Bereaved contributors told us about their grief and loss, as well as feelings of relief, shock, anger and despair. 

In some cases, loved ones did not know that their family member or friend was near the end of life and were only contacted once their family member or friend had died. This meant they were unaware of how their health had deteriorated in their final days and did not have a chance to prepare or say goodbye. This left family members and unpaid carers feeling confused and angry.

“

A policeman knocked on the door, walked in, he said, ‘Oh, by the way, your wife’s dead’ that’s how he said it.  He said, ‘Oh, yes, she died this morning. I’ve just been told to come and tell you she’s dead’. They [the care home] didn’t have the decency to ring me and let me know before the policeman turned up.” - Aelod o deulu galarus preswylydd cartref gofal, Cymru

“

I got a 4am call to say daddy had passed away on his own, he was put into two body bags and in a sealed coffin. I’ve still not been able to grieve properly, it was surreal, like a bad dream and I haven’t dealt with it.” - Bereaved family member of a care home resident, listening event, Northern Ireland

Contributors shared about the sorrow and guilt they felt when they knew their family member was dying. These feelings were particularly strong if they did not have an opportunity to say goodbye, or they thought their family member or friend had suffered. 

“	Dad was in a care home, not a prison which is what it became. I failed dad at the end of his life by not fighting for him, I will forever live with the guilt of that.” - Bereaved family member of a care home resident, England

“

The family are devastated that we were not able to be with him at the end of his life. We grieve that he did not get the send-off he deserved from his loving and very close family and it breaks our hearts as we feel he was deserted at the very time he needed us.” - Aelod o deulu galarus preswylydd cartref gofal, Cymru

In some instances, bereaved loved ones were comforted because they knew care staff were there at the end of their family member’s life.

“

They’d moved mum’s photographs and her flowers right next to her bed. They had classic music lightly on in the background. [When I got there, a member of staff] introduced me to [the other person there ‘This is [name]. She was with your mum when she passed away.’ I burst into tears and they couldn’t have been nicer.” - Aelod o deulu galarus preswylydd cartref gofal, yr Alban

“	Luckily grandad was well cared for at the care home and when he passed away, though we were all back in lockdown again and unable to be there ourselves, he was with some lovely carers.” - Bereaved family member of a care home resident, England

“

Fi asked was anyone with him and the healthcare assistant said ‘Yes, I was with him’. I wanted to know was you from an agency? ‘No’, she said, ‘a permanent member of staff’ and started crying on the phone and I found that really comforting because she knew my dad and she said she thought the world of him. That’s the only comfort.” - Bereaved family member, Listening Event, Wales

After the death of a family member in a care home, we heard about further restrictions such as attending care settings alone or staying distanced from the body. Contributors shared how this felt very different from how they would have said goodbye to somebody in normal circumstances.

“

Fi took my wife to the care home [to see her dad] but only she was allowed in, which was really difficult for my wife to be in there alone without support. There was no one with her. And the fact that she wasn’t allowed to touch him at all seemed a bit strange when there wasn’t a Covid [connection] with his death.” - Aelod o deulu galarus preswylydd cartref gofal, Cymru

The way in which the body of the person who had died was taken care of was also important. When bodies were handled sensitively and with dignity, this left a lasting impression on some bereaved families and provided some comfort in their grief.

“	The nurse asked me whether I wanted to help her to wash her and lay her out. I didn’t really know what that meant but it was a really, really good thing to do washing her and brushing her hair; it felt like a good thing to do.” - Aelod o deulu galarus preswylydd cartref gofal, yr Alban

We also heard examples of people not being treated with the care and dignity loved ones expected. This caused great distress to family members.

“	Even in death, they didn’t treat [my mum] with dignity, by not following a simple request to put a cuddly toy with her, losing her “happy blanket” and causing a delay in releasing the death certificate.” - Bereaved family member of a care home resident, England

Some bereaved families collected their loved ones’ possessions from care settings. However, some had to do this in a socially distanced way. They could not go into the room and pack up items themselves or speak to care home workers. This created a sense of coldness and detachment, as they could not reflect on their loved one or speak to staff about their last moments. Bereaved family members said this felt uncaring, upsetting and did not acknowledge their grief.

“

We had to go back a few days [after his death] to collect all his belongings which had been put outside ready and waiting for us to put in the car and remove. It felt as though they were just wanting to empty the room so they could get someone else in. Get the stuff out as quick as possible. The whole thing felt very cold.” - Aelod o deulu galarus preswylydd cartref gofal, Cymru

“

I was then advised that his room had to be sealed for a minimum of three days before any possessions could be removed. I was surprised to find that they were dumped in a box near the main entrance, and I was not allowed to see or speak to any of the staff. The cursory way in which this was handled hit me harder than I had expected, it seemed so callous.” - Bereaved family member of a care home resident, Northern Ireland

For some bereaved families, being allowed to visit the care home to collect belongings was confusing and upsetting when they had been refused access to visit their family member when they were alive. 

“

[The care home] phoned me and said, “Can you come and clear the room?” I said, “No. You’ve kept me out of there all this time; now you’re asking me to go into the place where there’s Covid and clear the room? No, I’m not going there. I was very angry about that.” - Bereaved family member of care home resident, England

Stories from Cardiff and Belfast Bereaved contributors at listening events in Cardiff and Belfast also shared how they were not able to collect belongings after their family member died and how the care and support received was not good enough.
“	When it was confirmed she had died, I had to leave the room and the room was sealed and I couldn’t get her clothes, they [the care home staff] told me she would be double bagged, she was in somebody else’s nightdress and no shoes, it seemed really wrong. No one should ever go through this again.” – Bereaved family member of a care home resident, listening event, Northern Ireland
“	He died on his own after catching pneumonia again after being transferred to the care home [from hospital]. They didn’t even know where his body was. They didn’t give any of his things back like bank cards or phone and they had the cheek to hand me back his 6-month-old biscuits and told me to feed them to the birds.” – Bereaved family member of a care home resident, listening event, Wales

Bereaved families told us how their loss had lasting impacts on their mental health and wellbeing, including feeling anxious, depressed and experiencing disruption to their day to day lives, all while grieving.

“	Fi stayed strong until my mum was in the ground and then I had a nervous breakdown. I actually tumbled into depression. I was physically exhausted anyway and obsessing over it I broke down, really.” - Aelod o deulu galarus preswylydd cartref gofal, yr Alban

“	You just don’t even know what to do next, all your thoughts are just about your mum. I went off sick and didn’t return back to that workplace. I think that was because of my mum, I just couldn’t stop thinking about her and missing her.” - Aelod o deulu galarus preswylydd cartref gofal, yr Alban

Stori Emma Emma lives in the South of England. Prior to the pandemic, she had been caring for her mum, Sandra who was 89 years old and had dementia. At the start of 2019, Emma and her family made the decision to move Sandra into a care home as her care needs increased.  The care home was a five-minute walk from Emma’s house and backed on to her garden. Emma and her sisters would visit Sandra every day. When the pandemic started and lockdowns were introduced, Emma found it difficult to live so close to her mum but not able to visit her.
“	I was in there probably five times a week. So, that was very hard for me. I think that was the worst thing for me in the pandemic, was [that] all of a sudden you can’t do what your daily routine was to do. I felt helpless that I couldn’t even go in the front door and, you know, I used to walk my dog past the door, but obviously she wasn’t on the side where the windows face this way, so, we couldn’t see-, it was actually awful to be honest. That was the worst thing for me in the pandemic. I felt helpless, I think actually very helpless.”
About three months into the pandemic, Emma had a conversation with the care home manager about what would happen if Sandra was to die while the care home was not allowing visitors. Emma was reassured that her sisters and children would be allowed in to say goodbye to Sandra if she was at the end of her life.
“	Obviously you were hearing horror stories on the news that people weren’t being allowed to go in and say goodbye. So, I actually phoned him and I said to him, ‘If anything happens to mum, will we be allowed in?’ And he said, ‘Absolutely’. I said, ‘Does that mean everybody?’ Because obviously I’ve got two kids, my sister has got three. And then he said, ‘Absolutely, you will be allowed to come in and say goodbye’.”
However, when Emma received a phone call from the care home to say Sandra was coming to the end of her life, they would only let two people in to sit with Sandra.
“	The carer that was actually in charge of my mum wouldn’t let some of us in. So, as you can imagine, it was traumatic and my mum was dying. To have all that extra stress not letting people in.”
Shortly before Sandra died, care staff told Emma and her sister that they had to go home. This led to an intense argument as Emma refused to leave her mum alone.
“	She said to me, ‘You’ve got to go home’. And I said, ‘I’m not going home and leaving my mum to die on her own’. So, normally I never get confrontational, but I remember my dad saying when he was dying, ‘Never leave mum on her own will you?’ I said, ‘No, I won’t. We won’t. We’ll always look after her’. I said to her, ‘I’m really sorry, but I’m not going. I’m not leaving her here to die on her own’.…After arguing for a while I just lost it, I did swear at her. I just lost it.”
The traumatic experience of sitting with Sandra while she died and the shock of having a confrontation with care staff has been hard for Emma to reconcile and she still has many mixed emotions about her mum’s death and whether she had been let down at the end of her life.
“	I have such mixed feelings about it…I think looking back on it we were treated disgustingly, some of the things the staff said to me, really at the time I suppose I should have made an official complaint, but you’re so distraught, you don’t know what to do. And then all of a sudden, you’re still in the pandemic.”

After the deaths of their family members, loved ones had to arrange funerals and burials. Lockdown restrictions and social distancing changed how funerals were carried out. This added to contributors’ sadness, guilt and sense of loss.

“	We had three funerals in lockdown of close relatives, all of them restricted in numbers. We had to stand distant apart outside the crematorium and then you went home. I think that had a bigger impact on me, because that felt wrong and I felt like I’d let him down.” - Bereaved family member, England

“

We weren’t allowed to have a wake or a funeral and there was no funeral mass, it was just done online and then when everybody came, no-one was allowed to come to the house for the coffin leaving the house. We weren’t allowed to gather as a family to grieve.” - Bereaved family member, Northern Ireland

“	She [mum] was being cremated, and they couldn’t give us a day because there was a backlog. When we got a day they wouldn’t tell us a time, then my brother got a call to say, ‘by the way she has been cremated’, it was really difficult.” - Bereaved family member, listening event, Northern Ireland

Sophie’s story Sophie is from London, she worked in social care during the pandemic, in addition to supporting her mother-in-law who lived in a care home. Sophie’s mother-in-law had dementia and died in her care home during the pandemic. The restrictions prevented Sophie’s family from seeing her after she died, and the burial was also delayed.
“	She died on a Saturday. And because of our religion, you get buried very quickly. I’m Jewish. And normally, she would have been buried the same day, but because of Covid, it couldn’t be until the Monday.”
Sophie’s mother-in-law remained in her room until her funeral, with a care home worker the only person able to see her.
“	She couldn’t be taken to the mortuary because of Covid. So, she had to stay in her room and her carer said he’d watch her, and he’d keep looking in on her, which meant a lot to us.”
Sophie expressed concern about her mother-in-law not having the normal burial rituals.
“	I don’t know if they put them in a plastic coffin, I don’t know what they did. I couldn’t see that. But she was taken, put straight into a coffin and to the cemetery. I don’t think they will have bathed the body or done anything.”

Many bereaved families continue to feel angry about the circumstances around the death of those they cared for. They felt that they had been let down by the rules and restrictions that were in place, as well as the wider response to the pandemic.

“	When she died, I must have been angry for a good year after, if not longer. Really angry that people were not listening to the rules – well, the government wasn’t.” - Bereaved family member of a care home resident, England

“	I was very angry afterwards…but you can’t turn back time…we had so much taken away from us in those years.” - Bereaved family member of a care home resident, England

Some bereaved contributors told us how their own wellbeing and mental health continues to suffer due to the traumatic nature of their family member’s death. 

“	It took me probably two years to actually come to terms with how she died, I used to wake up in the night in absolute panic [about it].” - Bereaved family member, Wales

“	I kept having dreams about my dad dying and his face when he had died. I would get angry about not being able to see him.” - Bereaved family member, England

5. PPE and infection control measures

Concerns about virus transmission

A major worry for care workers, unpaid carers and loved ones during the pandemic was the fear of contracting Covid-19 and passing it on to others, particularly people with care and support needs. 

“

Being the manager of a care home, you don’t want to be putting yourself in a position where you’re going to bring an infection into the home, so my own contact with my own family was quite limited. My sister was going through cancer treatment, so I couldn’t really spend much time with her either because I didn’t want to take anything to her, so that whole experience was awful.” - Registered manager of a care home, Northern Ireland

“	It was devastating. It shut every aspect of my life down. I still have nightmares of my son dying of it, my mum catching it, I was petrified.” - Unpaid carer, England

Social care professionals were acutely aware of the heightened risk of transmission in social care, which increased their worry. Contributors told us how concerned they were throughout the pandemic, even when they did not have Covid-19 and this concern impacted on their physical health and wellbeing.

“	I wasn’t sleeping right, I wasn’t eating properly – but that was all just to do with the worry of catching Covid.” - Healthcare worker, Scotland

Health and social care professionals from ethnic minority backgrounds were particularly concerned about catching Covid-19 because of the disproportionate impact that Covid-19 had on people from those backgrounds. Contributors found that workplace risk assessments did not take account of their heightened risk of catching and dying from the virus.

“

I would like to say I probably feel quite a strong, independent sort of person that has rational thinking…The pandemic…because of my ethnic background, just instilled complete fear. I didn’t recognise myself…I had anxiety. I had irrational thoughts. I’d panic…So they were putting out information that they were, I don’t know the stats, two or three times more likely to die than their white counterparts if they got Covid. I [w]as a BAME [Black, Asian and Minority Ethnic] individual who had no choice but to work through the pandemic, because my role was in social care…It did not have, in the risk assessment the risk of being from the BAME community and I was arguing in my workplace saying, ‘You should have a special risk assessment for me’.” - Healthcare worker, Scotland

“

Many people in our Black community died as a result of Covid-19 or Covid-19 exacerbating or causing complications of underlying ailments. As we heard of more and more colleagues, family, friends, church elders dying in large numbers. Many nursing colleagues being forced to work in high risk Covid-19 areas even if they themselves are vulnerable and at high risk of getting infected with a probability of having a worse outcome. The worst thing about the Covid-19 pandemic era is the fear, fear of getting the infection, fear of possible disability as a complication of Covid-19, fear of death, the isolation especially whilst spending many days working from home, not seeing family, friends, colleagues.” - Healthcare worker, England

For health and care workers who travelled between multiple locations, such as domiciliary care workers and palliative care nurses, concerns about infection control were not just about protecting the people they cared for but also their own family members. They did not have confidence in some of the infection prevention measures as they were spending time with so many people and were worried about their own exposure to infection. 

These fears made social care professionals particularly cautious and, in some cases, they took extra precautions, such as disinfecting themselves before entering the homes they visited for work as well as their own homes, to avoid spreading the virus.

“

We were going into elderly mental illness [EMI] care homes. We were going into learning disability care homes, we were going into hostels where there were people that had been released early from prisons, going and visiting them. Then, we were obviously going from care homes full of Covid, then going into patients’ homes that are having chemotherapy. So, it was very mixed. It was very scary. I didn’t know if when I came out of that care home, no matter how well PPE’d up we were, if I could potentially give it to the next patient I saw, who could have been on chemotherapy and immunosuppressed.” - Community nurse, England

Some care homes had designated changing rooms, so that their staff could change in and out of their uniform, preventing the spread of infection between their own home and the care home.

“	You didn’t come to work in your uniform either, you got changed here. We had a changing room made upstairs, so you got changed here and then at the end of the day your uniform was taken off here, washed here and you obviously put it back on the next morning.” - Care home worker, England

We also heard examples of staff temporarily moving into the care home to avoid transmitting infection into the care home or back to their own home. This meant spending extended periods away from their own family and friends. Contributors who did so told us how they experienced increased feelings of isolation and loneliness as a result.

Sofia’s story Sofia worked in a care home in the North of England. In May 2020, one of the residents in the care home had a suspected Covid-19 infection. Consequently, Sofia and her colleagues moved into the care home to provide backup care in case of staff illness and to protect their vulnerable residents. Some of Sofia’s colleagues also moved into the care home to protect their own families.
“	We moved in for a few weeks because we were worried that if a lot of staff went off then we’d step in and also, we had vulnerable people at home. So, when we knew it had actually got in here, we just moved right in.”
When Sofia’s son contracted Covid-19 and there was not enough space in their flat for him to isolate, Sofia again moved into the care home to protect herself and the care home residents.  Throughout the pandemic, Sofia and her colleagues would also stay at the care home for one or two days when outbreaks threatened, due to uncertainty around staffing levels and support needs.

Stories from Stockton-on-Tees Social care staff in Stockton-on-Tees shared, at a listening event, how fearful they were about spreading Covid-19 to their families. They described the struggle of balancing priorities as the pandemic caused tension between professional responsibilities and keeping their own families safe.
“	I was frightened for my own family; my partner was vulnerable. When I got home after a shift, I would run upstairs; I was scared I would bring Covid home. I didn’t even want to stroke my dogs.” – Care worker, listening event, England
“	My wife also works in the support field and it was hard for her. At times, she would stay in a hotel and sometimes, we stayed together at home, but there was a lot of cleaning to be done. I would clean downstairs and wipe down absolutely everything. And my wife would go upstairs.” – Care worker, listening event, England

PPE requirements, guidelines and compliance

The Department of Health and Social Care (DHSC) and Public Health England (PHE) published guidance on infection prevention and control (IPC) throughout the pandemic. This included guidance on the correct usage of Personal Protective Equipment (PPE), such as masks, gloves, aprons, visors and hand sanitiser. This was then disseminated through the care sector via local authorities and care providers. 

PPE guidance for people receiving care varied between care settings. People receiving care and support in care homes often were not required to wear masks. In general, contributors understood the rationale for this, but some reflected on the increased risk it posed.

“	Our clients didn’t have to wear a mask all the time, sometimes it felt like we were trying to protect them – but how protected were we? Clients weren’t compelled to wear a mask.” - Domiciliary care worker, Northern Ireland

The social care workforce explained how PPE guidance changed frequently creating confusion, stress and uncertainty.  

“

I think the biggest change for us was the PPE, because I remember when somebody came in for the first time wearing a mask because it was not provided, they bought it, the manager actually asked that person to take it off because they say, ‘How do you expect to communicate with the residents? You’re going to scare the residents’. Then, a few days later, it was compulsory for everyone to wear a mask. So, it was a very big change and very strange.” - Community nurse, England

Many care home workers and registered managers described how communication, rules and procedures setting out what PPE was required kept changing and could contradict previous advice. This led to challenges around planning and making informed decisions amidst unclear guidance.

For domiciliary care workers, inconsistent messaging from their employers and the government left them unsure about when and where they needed to use PPE. These contributors were often working alone in different homes and found it difficult to know what they should do without support and advice from colleagues.

“

Public Health England were issuing guidance daily – notably the change to guidance on PPE was issued at 11pm on a Friday night with no instruction on how we might procure such equipment. I counted over 200 pieces of guidance issued in a month that I personally had to read and implement.” - Registered manager, England

“

The changes were too quickly imposed, we knew they needed to be quick because the government was reacting late, but the changes were too quick and too erratic. They changed too much – one day it was this, the other day it was that. They didn’t focus enough on the main thing – PPE – we didn’t have what we needed in terms of PPE.” - Care home worker, England

“	Emails were sent out [from management] saying that we do have to wear a mask, where in other emails they said we don’t have to. It was always a bit confusing.” - Domiciliary care worker, England

As the pandemic progressed, stricter PPE guidelines were implemented, including specific procedures for donning and doffing PPE (putting PPE on and taking it off). The social care workforce told us how masks, gloves and aprons had to be correctly removed and disposed of between each episode of care to prevent the spread of infection. 

Some care home workers shared how they received frequent and thorough training about how to use PPE. This included online and face to face training and demonstrations and refresher training about how to wear PPE, ensure hand hygiene and general infection control.

“	We had lots of intense training because I had to have briefings with all my carers to make sure that they are following all the guidelines that were introduced by the government.” - Registered manager, England

“	We actually had to do a training module, a video to watch how to use and dispose of PPE through the pandemic. So, it was the same as for washing as well.” - Palliative care nurse, Scotland

However, a number of care home managers expressed concerns about the added pressure of overseeing PPE training and a lack of external support and guidance. 

“

Help often came too late to be effective. We were scrambling to try to train care home staff to use PPE correctly. We were finally offered support from the CCG [Clinical Commissioning Group] for this training – nine months into the pandemic. We were told we had a designated lead who was meant to be our connection to the NHS. We were never told who this person was or how to contact them. They certainly never contacted us.” - Registered manager in a care home, England

Generally, the use of PPE in care settings provided a sense of reassurance to social care professionals, unpaid carers, loved ones and people with care and support needs. In particular, there was a shared understanding across these groups that PPE was important to prevent the spread of the virus.

“	I felt better that they were wearing PPE and they were giving us protection so we wouldn’t catch anything as well…it was reassuring.” - Person ag anghenion gofal a chymorth, Lloegr

“	The fact we had the PPE that we needed, I knew how to use them, but there was always that support if we needed it. I felt the policies in place were up to standard, enough to keep me safe.” - Domiciliary care worker, England

People with care and support needs told us that care workers routinely used PPE such as aprons and gloves before the pandemic. The main change once the pandemic started was the use of face masks.

“

The only additional PPE they really used were masks. I mean, they use gloves and aprons anyway. They obviously use gloves all the time. But occasionally, they’ll use aprons, depending on what they’re doing. So, the only real, new addition was the masks.” - Person with care and support needs, Scotland

However, some other contributors told us how care workers wore PPE incorrectly, or not at all, at times which led to concern around the spread of infection.

“	Carers should wear masks but, unfortunately, a lot of them wore their masks underneath their nose and just about covering their mouths. And some of them decided that that wasn’t even necessary and wore them under their chins.” - Person with care and support needs, Northern Ireland

“

Staff didn’t have full PPE on. Some staff would come in, they’d have a mask on. Some of them didn’t have an apron on and some of them didn’t even have gloves on, so I thought, well, no wonder half the people in here are dying, because you’re passing it through to everybody because you’re not wearing the right PPE.” - Loved one of a care home resident, Northern Ireland

Early on in the pandemic, some people with care and support needs told us they proactively asked domiciliary care staff to wear masks because they were so worried about catching Covid-19. However, even when masks were specifically requested, care workers did not always wear them properly.

“

I was becoming very worried about it. After I had said that I would like the carers to wear masks, I had to then speak to the carers individually and say to them, ‘Please, please, for my sake, would you wear masks?’ A few of them did. I then started wearing the mask but that’s a bit difficult if you’re having your hair washed because the thing is going to disintegrate.” - Person with care and support needs, Northern Ireland

Despite some concerns, people with care and support needs and their loved ones reported good, consistent use of PPE in care homes and by domiciliary care workers. Care home residents discussed receiving their own antibacterial gel and PPE to use when needed and were asked to wash their hands as regularly as possible. Residents found using PPE reassuring and they felt safer if other people used PPE when interacting closely with them.

“	We were given little sanitisers, little bottles of sanitisers. Everything was taken care of. I mean, they really did a good job.” - Person ag anghenion gofal a chymorth, Lloegr

“	Staff [were] sticking rigidly to what they were being asked to do, adopting the new measures in relation to infection control. As a family we were very reassured the staff were both competent and experienced.” - Loved one of a care home resident, England

PPE shortages

Most contributors were concerned about the varying availability of PPE. The high demand, coupled with supply chain disruptions, meant most social care professionals faced challenges accessing PPE, especially at the start of the pandemic. While some healthcare professionals, such as palliative care nurses, reported adequate PPE supplies, others, including community nurses, social workers, dieticians and those working in care homes and domiciliary care settings, faced significant shortages.

Some contributors discussed PPE being diverted away from care homes into hospitals, as well as care homes taking priority over domiciliary care. Those working in community settings felt undervalued and inadequately protected, believing that hospitals were being given preferential treatment.

“

At the start of 2020 I was a healthcare assistant in a nursing home. I went into the storeroom – 15ftx18ft – so not a tiny cupboard. The storeroom was always full to the brim, it was where all PPE was stored, gloves, aprons, laundry bags, wipes, pads etc. I was dumbfounded, I thought we had been ransacked. The room was bare apart from 2 boxes of gloves and a few pads. We were told the NHS need was greater. Staff had out of date PPE, if any.” - Healthcare worker, England

“

We had suppliers who had procured PPE for us who would phone us up on the morning when a shipment was about to arrive into the UK and tell us that the delivery had been effectively hijacked by the government and it had been prioritised for the NHS and so they were no longer going to be able to supply it to us.” - Domiciliary care worker, England

Many social care professionals were forced to find and secure their own suppliers of PPE because of widespread shortages. Many obtained PPE from unusual sources such as websites, personal contacts or through donations from the local community. Staff also described having to pay for their own PPE to make sure they were protected. Contributors also discussed making their own masks, buying hand sanitiser from local businesses or relying on donations. All of this took time and effort.

“

In the beginning, the PPE didn’t come from within healthcare or the government, it came from local people and businesses who had masks for their line of work and they brought them to the door of the home because they knew we had so little. Local people made visors and scrubs. We took what these kind people gave us and we were very grateful.” - Care home worker, England

“	I’d go to [my] neighbour next door who was good at sewing masks, because it was difficult to get basic masks. The PPE equipment, that was a joke because there was a lack of it.” - Domiciliary care worker, England

People with care and support needs also told us how they were supported by family, friends or community organisations to find PPE such as face masks, gloves and antibacterial gel. Some unpaid carers told us how they worried about shortages of cleaning equipment such as hand sanitiser.

“	They were delivered to us…we were provided with masks and gloves, so that was okay, that didn’t cost us anything and they gave us that and buffered the problem [of not being able to find PPE].” - Unpaid carer, Northern Ireland

“	Sanitiser became an issue at one point, because I did become so OCD with it. I did go through it. Then, it went to a point where you couldn’t get it anywhere.” - Unpaid carer, Scotland

Many contributors highlighted the increased cost of PPE during the pandemic, resulting in widespread resentment of PPE suppliers and profiting from the pandemic.

“	Things that were ordinarily costing you a penny or 2p were inflated, like, to £1. And if I think back to when we had to fundraise, that was the message we were giving to donors.” - Care home worker, England

“	Because obviously people were jumping on the bandwagon because suddenly there was a lot of profit to be made on PPE. And we bought a container load, it cost us so much…I think it was £72,000. - Registered manager, England

“	People were putting the prices up. The prices were extortionate at that point, and then there was lots of companies who started manufacturing them, and it was a whole big business.” - Registered manager, Northern Ireland

When the social care workforce could not source PPE, they reused single-use items (such as masks and aprons) or limited how often they were using PPE and were conscious about not wasting it.

“

We had a shortage of PPE. At the beginning, one mask a night [was] provided. And then if you were attending a Covid patient, you had to re-wear that, you put it in a little envelope, wear it, enter the room, so that when you enter that patient again, you had to re-wear your mask.” - Care home worker, Scotland

Lack of access to PPE meant some workers did not want to carry out their care role, for fear of catching the virus. In care homes this was amplified by seeing external healthcare and other professionals arrive at the care home in full PPE, making staff feel that they were not prioritised.

“	Undertakers were rocking up here with hazmat suits and these big breathers and we’re sitting with flimsy masks and an apron.” - Gweithiwr cartref gofal, Gogledd Iwerddon

“	I can remember management being so ill advised on PPE, but I could see NHS staff in masks and full protective wear, we had paper masks which we were told to only wear when you are providing personal care to the most vulnerable as the care home did not have enough stock.” - Care home worker, England

Contributors from all groups told us that, generally, access to PPE became less of a concern later in the pandemic as the government began to issue free supplies and there was enough PPE to meet their needs. 

Quality of PPE

Views on the quality of the PPE were mixed across the social care workforce. Some people were satisfied with the quality of PPE they obtained while others expressed concern. Staff were worried about the risk of infection as poor quality PPE added to donning and doffing time. The quality of PPE could also vary between batches or by supplier, adding to the job of ordering PPE and creating uncertainty. 

“	The quality of the PPE was quite good. I couldn’t complain about it. It did the job to be honest.” - Healthcare worker in a care home, England

“	You’d get one apron out, it’d rip, you’d get another one out and you spent more time trying to put on the proper protective wear. It was the same with the facemasks, the elastic would come off, it would fall down, you were exposed.” - Care home worker, England

“

The quality was awful. We’d gone from quite thick, good quality ones to some of the gloves, you used to pick the pair up and you could see straight through them. Masks were very flimsy. Gloves, I remember one of the girls, we found an old box of gloves. She filled it up with water from the tap, it was watertight. The new gloves, yes, little bits of seepage, which is not good when you’re dealing with bodily fluids and things. Water droplets. The masks went from being three ply to two ply. Obviously, taking that extra layer, more droplets are going to come through.” - Community nurse, England

Care workers also told us they received PPE that was out of date. Some expressed concern about using out of date PPE, however they continued to use it as this was all they were able to access. Care workers felt undervalued when this happened. They thought this was an indication that protecting them mattered less.

“	How [PPE] can be out of date is a bit beyond my understanding, but what we were given had a date on it that was out of date. So, I feel that’s how much we mattered.” - Domiciliary care worker, England

Using PPE and other infection control measures

Overall, contributors were reassured by the use of PPE during the pandemic and felt it was important to prevent the spread of the virus. They also discussed how wearing face masks and other PPE has now become the norm. They felt this was a positive impact of the pandemic as it reduced the spread of infection generally. 

“	If someone has, you know, got a cold or something and you don’t want to catch it or you don’t want to be sneezed over or whatever, you can ask them to wear a mask if they’ve got them. So, that’s quite good.” - Person ag anghenion gofal a chymorth, Lloegr

While most contributors recognised the importance of PPE and supported its use, they also acknowledged the challenges and discomfort it could cause. Care workers were adversely impacted by the physical effects of wearing PPE, especially when it was perceived to be poor quality. Some shared how PPE made them hot and was uncomfortable to wear. Care workers told us how masks caused bruises on their face, rashes, breathing difficulties and fatigue from wearing them continuously.

“	It was hot, it was sweaty, you ended up with rashes all over your face…the excess handwashing, the gels: it’s done nothing for my skin.” - Domiciliary care worker, England

The discomfort experienced by care workers was exacerbated by having to wear PPE for long periods of time due to limited supplies, meaning they were unable to eat, drink or go to the toilet.

“

We would gown up for the day in the home and not be able to take the PPE off until a designated break, so we couldn’t use the toilet, couldn’t have a drink, nothing. All we could do was sweat under layers and layers of plastic, with masks and face shields, trying to reassure confused older people who didn’t understand why we looked that way, why they couldn’t do the things and have the quality of life they were used to.” - Healthcare worker, England

The social care workforce also recalled how aprons made moving and handling more awkward as they would get in the way while providing care. In addition, they found PPE was uncomfortable which affected their wellbeing at work.

“	A lot of the time [PPE] would just result in you being a lot hotter and getting quite uncomfortable, which then is going to feed into other factors like how you’re carrying out your role.” - Gweithiwr cartref gofal, Gogledd Iwerddon

The use of PPE, although reassuring to all, also created communication barriers. Care workers and people with care and support needs shared how being unable to see facial expressions and interpret non-verbal cues while wearing masks made communication more challenging and strained relationships.

“

I felt sorry for the people I support, people who are not verbal; they need cues, but they could not see our faces when we spoke with all the PPE on. They could not understand when we spoke when we were wearing PPE. They tried at times to rip it off you, and then they were seen as challenging, but they weren’t, they could not see or hear us.” - Care home worker, England

People with care and support needs reflected on how difficult it was to communicate and understand those caring for them when they were wearing face masks.

“	[Wearing a mask] does detach from, like, you can’t read facial expressions in the same way…I didn’t realise how much you naturally rely a little bit on the lip reading without realising it.” - Person ag anghenion gofal a chymorth, Lloegr

For those caring for individuals who were d/Deaf or hard of hearing, the inability to lip read posed a significant challenge. To overcome this, care workers talked more loudly, which could be perceived as rude. Others noted how people who were d/Deaf could no longer rely on lip reading and would sometimes physically attempt to remove the care workers’ masks. Care workers sometimes had to remove their mask to communicate with people, potentially increasing the risk of transmission for themselves and those receiving care. 

Use of PPE varied among unpaid carers, depending on the specific needs of their household. Some opted not to use PPE within the home or in close contact with friends or family nearing the end of their life, as they preferred to keep things feeling as normal as possible and to make it easier to communicate. 

“	My mum wanted to see our faces and our dad was dying, so, it was like, ‘If he gets Covid now it doesn’t matter’. It was pointless covering ourselves up and he wanted to see us and we wanted to see him.” - Unpaid carer, Northern Ireland

Unpaid carers and care workers suggested that face masks caused distress and upset for some people with dementia and those with a learning disability, as they found it frightening and confusing not being able to see people’s faces. Where they were required to wear a mask, they could not always understand why. In some cases, this led to challenging behaviours. Providing care in these circumstances was difficult for unpaid carers and care workers.

“	[My mum] struggled with the mask and she was panicking a bit and it was very difficult and I was having to say, ‘Try and keep your mask on, Mum. Put it over your nose, put it over your mouth’. It wasn’t easy.” - Loved one of someone receiving domiciliary care, Wales

Loved ones and unpaid carers wanted infection control measures to be put in place in a way that demonstrated care and consideration for people living in care homes. Contributors found it distressing and concerning where this did not seem to be the case. They often worried about the wellbeing of those receiving care. For example, contributors told us about PPE being left behind as staff left a resident’s room which made them feel less comfortable and cared for.

“	Every time they used the PPE, as they walked out, they’d take all their PPE off and leave [it there]. So, the room just felt like a bloody dustbin.” - Loved one of a care home resident, England

The requirement to don and doff PPE in between care visits, in line with Covid-19 guidelines, also placed significant time pressure on care workers, particularly domiciliary care staff who made multiple home visits daily. This constant need to change and dispose of PPE after every care contact impacted some workers physically, causing discomfort, while for others it reduced the time available to deliver care.

“	If we went into a house [we had to] gown up; before you came out, it was taking everything off. It was just remembering the procedure. You got into it eventually, but it was just all this constant changing.” - Domiciliary care worker, England

Covid-19 testing

Covid-19 testing was a crucial infection control measure during the pandemic. The introduction of testing provided much needed reassurance. Access to Covid-19 tests was essential for social care professionals given the movement of care workers between care homes, other care settings and their own homes. The topic of Covid-19 testing for residents on discharge from hospital into care homes is covered in Chapter 3.

The early stages of the pandemic were marked by variable access to Covid-19 testing and logistical hurdles. Initially, only PCR tests were available, which required processing at dedicated sites. PCR tests were prioritised for specific groups, such as individuals with underlying health conditions, frontline NHS staff and care workers. The subsequent introduction of Lateral Flow Tests (LFTs) marked a significant shift towards more accessible and rapid testing. 

Initially, some care home workers struggled to access tests for themselves and residents. Additionally, there were reports of lost PCR tests and delays in receiving test results.

“	Testing was delayed, test kits went missing after collection, test results had to be chased and not found – repeated tests [were] submitted for this reason, which wasted the limited PPE that we had access to.” - Gweithiwr cartref gofal, Gogledd Iwerddon

However, later in the pandemic, contributors reported having sufficient access to tests, particularly LFTs. 

Testing protocols varied across care settings, job roles and throughout the pandemic. Some care organisations implemented or required daily testing from staff, while others tested weekly or only when symptoms arose. Testing helped many staff feel more confident they were not spreading the virus to those they provided care for. However, there were also instances where they felt pressured to test frequently, even when asymptomatic. Regular testing also added to their workload.

“	We had a very strict testing regime but throughout 2020 it was weekly PCR testing until Dec 2020 when lateral flow testing was introduced twice weekly along with weekly PCR testing.” - Care home worker, England

“	Every single morning, we were supposed to have a Covid test. You had to take a picture and send an email to our office saying, ‘This is today’s test just to prove that I’m not spreading infection. My test is negative and I can carry on work’, on that day.” - Domiciliary care worker, England

Testing of care home residents became a standard procedure. Early on in the pandemic, this was particularly important when hospital patients were discharged into care homes. Initially, PCR tests were used, which required processing at dedicated sites. Later, the introduction of Lateral Flow Tests (LFTs) allowed for more rapid testing. More detail on the experiences of discharges from hospital into care homes can be found in Chapter 3. 

Social care professionals experienced difficulties in administering tests, particularly those caring for individuals with dementia or learning disabilities, and noted the negative impact this had on people with care and support needs.  

“	We had to test our dementia residents, which was very difficult as they had no understanding or previous experience of this type of testing.” - Gweithiwr cartref gofal, Gogledd Iwerddon

“

I spoke to families who felt that their family members shouldn’t be tested and we were told we had to. So, my way of getting around that was if I went up to test somebody and they absolutely refused, I didn’t do it. We are traumatising these patients who have a learning disability who see us, in these masks, sticking this up their nose.” - Community nurse, Northern Ireland

As restrictions eased and visits to care homes resumed, testing of visitors also became a standard procedure. When loved ones were allowed to visit people in person in care homes, numbers were limited and they had to book appointments, take a Covid-19 test, wear PPE and maintain social distancing. Some found these visiting protocols challenging, time-consuming and difficult to adapt to. 

“	[We had] to sit outside [to] put aprons [and] masks on; we had to do swabs up the nose and then go in all masked up and aproned up to go and sit with my dad.” - Loved one of a care home resident, Scotland

People with care and support needs living at home, and their unpaid carers who lived separately, also used LFTs to check whether they could visit each other. Again, this provided some reassurance, with contributors sharing the positive impact this had on their fears about catching the virus.

“	Having the Covid testing, so we could see each other, check if we had a fever or something. You know, we weren’t going out frequently.” - Person ag anghenion gofal a chymorth, Lloegr

Cadw pellter cymdeithasol

Social care professionals faced significant difficulties related to social distancing. We heard that many care workers were unable to maintain physical distance when providing personal care to people. 

“	We couldn’t keep our distance, because we’re there having to do [the residents] turns and we’re having to feed them. Some of them can’t feed themselves. We were having to give them sips of water and sips of pop and cups of teas and bath them and stuff like that.” - Care home worker, England

“

You cannot social distance from someone that you’re working with, two of you have to take care of the resident. It was impossible. So, we did use the PPE and we did what we needed to do, but both [care home workers being a] two metre distance [away from the resident] was not possible. If I’m going to stand on one side of the bed and on the other side of the bed is my colleague, that’s not the distance they are looking for, but that is what was required to look after the resident.” - Care home worker, England

Many found it challenging to navigate situations where physical contact with those they cared for, a key part of usual care for providing reassurance and fostering relationships, was no longer possible, despite it being requested. This was particularly challenging for people with a learning disability or dementia who did not understand why staff were behaving differently.

“

Some of our [people with] learning disabilities [or] dementia they’d be happy to see you and then they’d want a hug, or [to] come and sit with me, hold my hand. You couldn’t do that. You weren’t allowed to do that and it was hard trying to tell them, ‘No, I can’t hug you today’.” - Care home worker, Scotland

Some family members described being relieved when staff bent or broke the rules in order to support people in an empathetic or more humane way. 

“

There was supposed to be no physical contact, [but] a lovely lady [at the care home] broke the rules, because when mum was distressed, she just said, ‘She just needs a hug’. We couldn’t do that and it was good to know that someone was breaking the rules to give her that contact.” - Loved one of a care home resident, Scotland

Unpaid carers and family members found supporting autistic people and people with learning disabilities to follow social distancing was challenging. For example, unpaid carers discussed having to supervise them around the clock when another family member was isolated in their room.

“	[My daughter who has learning disabilities] could not understand the need for a mask or the use of a mask…It was quite intense, the fact that she had to be accompanied all the time so that she [didn’t come into contact with the family member isolating with Covid].” - Unpaid carer, England

Social distancing also applied to visiting people in care homes. This was managed in different ways as the pandemic progressed from no visits at all, to outside window visits, to distanced visits inside the care home. This is discussed in further detail in Chapter 2.

Cleaning, disinfection and housekeeping

Other infection control measures in care homes included enhanced cleaning procedures and the disinfection of high-touch surfaces. 

Housekeeping staff played a pivotal role in maintaining these heightened hygiene standards, ensuring that care settings were cleaned and disinfected thoroughly, sometimes multiple times a day. Some care home residents mentioned how care or housekeeping staff would sanitise their room once a week. Many found this level of cleaning comforting and appreciated the efforts the care home staff went to.

“

A man in an orange suit used to come and sanitise my complete room. I had to sit outside on the chair for 10 minutes. And he would spray everything and then, I had to wait 10 minutes for it to dry and then I could go back. But every day when the cleaners came, they would sanitise the door handles. You know, they were meticulous in what they did. Everything was taken care of. I mean, they really did a good job.” - Person ag anghenion gofal a chymorth, Lloegr

Strict cleaning protocols, schedules and audits, increased the workload of already busy care home workers. However, contributors understood the importance of these measures for infection control. Some care home workers discussed the introduction of new roles, such as infection control champions, to enforce infection control measures and to provide updates.

“

[Care home managers] implemented a proper regime in the end where it was three-hourly cleaning of handrails, doors, everything, throughout the buildings and things. I was one of the main ones that was doing it. I was making sure we were doing it and we had checks to do all that. So, it was a lot of work constantly. As soon as you cleaned one area, you were cleaning again.” - Housekeeper in a care home, England

Claire’s story Claire was a full-time head housekeeper in a nursing home in England during the pandemic. She managed a team of housekeepers and had been working at the nursing home for over five years. She described how she implemented enhanced cleaning and hygiene protocols to prevent the spread of Covid-19 within the home.
“	We did deep clean if there was a suspicion that somebody could have Covid. We had a foot bath outside where we disinfected shoes before we came in. Constantly cleaning the rails, touch points, the lift.”
In addition, attention was paid to cross-contamination, ensuring residents received their own designated towels and clothing, which were individually laundered.
“	It was making sure, even [their] towels, you know, there was no mix up on towels, no mix up on clothes, so everything that was going to the resident was theirs and has been all washed individually.”

Unpaid carers discussed infection control measures as being a priority, particularly at the start of the pandemic. Cleaning and disinfection protocols were a time-consuming burden for some. This was particularly challenging early in the pandemic, when contributors reflected that no one knew exactly how the Covid-19 virus was transmitted, and a range of different infection control measures were therefore common. In practical terms, efforts to reduce the risk of catching Covid-19 often took considerable time and energy day to day for unpaid carers. People with care and support needs, unpaid carers and loved ones also mentioned taking additional precautionary measures, such as wiping down items they had bought from the shops with antibacterial wipes, while others started to use paper plates and cutlery.

While some contributors were able to manage these activities, others struggled to do so, finding it hard to cope with the added worry about making sure everything coming into the home was disinfected. This affected unpaid carers living with the person they cared for and those living separately. We heard how some unpaid carers described experiencing intrusive thoughts and compulsive behaviours around the importance of cleaning. 

“	I was spraying sanitiser everywhere. At one point, I was adding it to bottles of [disinfectant]. I just turned into this absolute, like, sanitising maniac. I got the wipe dispenser things all over the house. I just turned into this obsessed freak.” - Unpaid carer, Scotland

The pressure of having to exercise constant caution was also exhausting. Some described additional strain from needing to reassure the person they cared for at home, managing their worry as well as their own.

“

I found it more challenging mentally. I was just so drained having to reassure him [the person they cared for]. He was just constantly on tenterhooks, for example, if I had to go to the shop for him, that was like, ‘If somebody who’s got Covid’s touched that, you’re going to bring that back to me.’” - Unpaid carer, England

6 Staff shortages and how care was delivered

Causes of staff shortages

Contributors explained the multiple causes of staff shortages during the pandemic. The importance of different reasons for staff shortages changed as time went on. These reasons included concerns about virus transmission, shielding linked to staff health conditions, self-isolation requirements, stress because of larger workloads, sickness absence linked to Long Covid and unease about pressure to have the vaccine.

During the first lockdown, staff left the care workforce because they were worried about catching Covid-19 and the potential health complications of the virus for them and their families. Staff who remained were worried about what would happen to their families if they became very ill or died of Covid-19.

“	A lot of [staff] people left because they didn’t want to be put at risk, which then meant you’d got more rotas to cover [and] more customers to see and less staff to use.” – Registered manager, Scotland

“

I worked for a care company during Covid and left because their practices were inconsistent and unsafe. I lived with vulnerable people and raised concerns continually as we were going into lockdown. I was concerned about the lack of PPE and hygiene practices as we were going into people’s homes to support them.” – Care worker, England

“

I was a care co-ordinator for a homecare service. It was frightening as we all thought we were going to die. I remember checking my life insurance as I had to ensure that my husband and children could manage once I had died as I was convinced I would get the disease through my job. As the government shut down the country, we had 14 staff go off within the care home and on the homecare side.” – Care worker, England

Some staff also had pre-existing health conditions which meant they were more at risk of catching the virus. Many left the workforce because they were required to shield.

“	I was at work one day working my way through the pandemic and I got a phone call from my manager [saying] ‘You have to shield’. I’m sitting in the house willing to go to work and I’m not allowed.” – Domiciliary care worker, Scotland

“	It was very difficult with the shielding…we had 60% of our staff shielding right at the very beginning, so we had to manage [with] staffing levels of 40%.” – Registered manager, Wales

Social care professionals also described having to isolate when they contracted Covid-19 or came into contact with someone with Covid-19, which meant they could not work.

“	If a staff member did get Covid then they weren’t allowed to come into work. They had to isolate. So not only were you having all the service users becoming poorly, you were having all the staff becoming poorly as well…the shortage of staff was unbelievable.” – Care home worker, England

 

Stories from Skegness We also heard similar stories at a listening event in Skegness, where contributors discussed the challenges of working overtime due to staff shortages.
“	It got tough because everyone was going off sick – because of the lack of cover we were working all hours with no break.” – Care worker, listening event, England
“	We were working-sleeping-working-sleeping. We had no days off to ensure everyone got care because we had people off sick with Covid.” – Care worker, listening event, England
The staff shortages affected the staff who had to carry on working.
“	Staff carried on coming to work even though they were scared.” – Care worker, listening event, England
“	They had to come back to work as there is no sick pay in care. Long Covid was certainly not covered in care. In the middle [of the pandemic] the government did start chucking money at us to help, but otherwise we just got statutory pay. No-one wanted to come and work.” – Care worker, listening event, England

Some contributors also wondered whether some of their colleagues were not coming to work for reasons other than being ill with Covid-19.

“	There were areas there [in the Covid-19 guidelines] that staff could take advantage of [to] get out of having to come to work.” – Registered manager, England

“	As a nurse, I always had a feeling of, ‘That’s my job’, and just because this has come along, we had so many nurses not come to work and I’m like, ‘But that’s your job, you can’t just decide because Covid’s here you can’t come to work’.” – Nurse working in a care home, Wales

Staff shortages caused severe stress for social care professionals who continued working, which in turn led to more staff absences and further shortages.

“	I think one particular shift there was something like 20% of the workforce working, because either they had Covid, or they were off with the stress.” – Domiciliary care worker, England

Later in the pandemic when the vaccine was introduced, some domiciliary care and care home professionals were worried about potential side effects of the vaccine and whether it was safe given how quickly it was developed. These concerns were heightened for those with pre-existing health conditions.

“	I know some people were unsure about the vaccination and how quickly it came out. Also, those who…had underlying health conditions were reluctant. – Healthcare worker, England

The requirement for care workers to have the Covid-19 vaccine in England, and pressure to do so from some care providers in the devolved nations, caused some care workers to leave the workforce, further exacerbating staff shortages. Some contributors described how they left because vaccine requirements did not fit with their values or beliefs or felt that it compromised their personal freedom. Some staff who remained in the social care workforce shared this concern. Staff leaving because of feeling pressured to have the vaccine undermined continuity of care for people with care and support needs, especially as staff left suddenly.

“	Some [care workers] were refusing to have it [the vaccine] because [of] all the side effects that were being talked about and…they were then given the ultimatum, ‘If you don’t have the vaccine, you can’t work’.” – Domiciliary care worker, England

“	I resigned from my post as I did not agree with forced vaccinations of my staff, even though I had the vaccine myself. I find it morally indefensible to coerce people to have any medical intervention.” – Registered manager of a care home, England

“	When the government said all care workers must be vaccinated, half our dedicated workers that had been here for years left.” – Registered manager of a care home, England

“	I worked in a care home, we were told we had to have the vaccines or lose our job.” – Care home worker, Scotland

 

Amara’s story Amara is a Black-Caribbean British woman living in the southwest of England. She worked as a healthcare assistant at a nursing care home for five years prior to the pandemic.   Amara had an exemplary attendance and performance record during her time there. However, when the nursing home required Covid-19 vaccinations for all staff, Amara was sacked for refusing to have the vaccine due to personal reservations.
“	My main negative experience is being sacked from my job as a healthcare assistant in a nursing home for refusing to take the Covid vaccine…I didn’t want the vaccine because I believe in body autonomy and felt bullied into having something in my body that I didn’t want.”
Amara described pressure on care home staff to have the vaccine, despite the hesitance of some. She noted that this pressure to have the vaccine and avoid losing their job particularly affected employees from other countries who sent money to their families or were on working visas and worried about their residency status, which relied on their care job. The loss of staff caused problems for the nursing home and, despite all the remaining staff being vaccinated, they subsequently had an outbreak.
“	My manager [was] upset as she had lost about 10 staff and wanted me to stay as I was a good carer.”
“	The ironic thing is that soon after myself and other staff were sacked the care home had a huge outbreak of Covid and had to close to visitors. So, some of the vaccinated staff must have brought it into the care home as by then ALL staff were vaccinated. So, what was the point of the mandate if staff could still contract Covid and bring it into the home. Made absolutely no sense.”
This made Amara question the purpose of the vaccine mandate, especially as the requirement was later reversed. She is still angry about the impact on the social care sector of the loss of skills and experience.
“	What a waste of thousands of experienced care staff being got rid of for no reason, in a sector that was already chronically understaffed. Most of those staff will never go back into care work, for fear of it happening again in the future. So, my 5 years of dementia experience and NVQ level 2 will never be utilised again.”
The loss of her care job has had long lasting consequences for Amara. She found a new job in a factory, but this did not suit her and she lost the job. She is now unemployed, in debt and on benefits, and her experiences have impacted her mental health.
“	[I am] back on benefits and now on anti-depressants after having a breakdown.”

Staff shortages had direct impacts on the quality of care provided and reduced the time available for getting people up, washing them and providing other aspects of personal care.  This was noticed by loved ones as well as the workforce.

“

Yes, they did have staff shortages. This was post-Brexit, they had lost some of their eastern European staff, who were excellent. People obviously came and went anyway. I think some were affected by the pandemic because they were working in that very pressurised environment and we were aware of people who had left, probably because they just couldn’t take any more. There were recruitment problems. I mean, towards the end when I’d gone in, I can’t find the date now, but mum was in a really bad way. She was dishevelled, she hadn’t got her teeth, she hadn’t got her glasses, the room was dirty, she was dirty and I made a formal complaint then. I discovered the cleaner hadn’t been in because they couldn’t recruit one so there were gaps and problems.” – Loved one of a care home resident, England

“	I had to keep people in bed through necessity, not choice. I had to give them a quick lick and a promise. There was no showers delivered because we didn’t have staffing levels, it was safer to keep some people in bed at the time.” – Nurse working in a care home, Northern Ireland

 

Increased use of agency staff

Staff shortages dibyniaeth gynyddol ar staff asiantaethau. This was often essential to maintain safe and appropriate care during the pandemic, but contributors also described negative consequences. These included increased risk of spreading Covid-19 and reduced quality of care because agency staff were not familiar with the people they were caring for.

“	Agency [staff] go into a care home [and] they haven’t a clue who the resident is. They haven’t got time to read every care plan. They don’t know the residents. It’s basic care [that they can provide as a result]. There’s no person-centred care there.” – Care home worker, England

“	To be in a small residential care home for learning disabilities is a job that relies on familiarity. Our residents needed continuation of care from people that knew their idiosyncrasies, [including] how they fed, drank and [received] personal care.” – Registered manager of a care home, England

“

I’d go in and I’d have to go and look after and aid [patients with] dementia, I could be put on different wards, I wasn’t put on the same ward, which was ridiculous as well, because they’d put me on 1 ward and then put me on another and there were 4 different corridors. So, I could be working on all different corridors all week, which was ridiculous. I could be looking after dementia patients, or if I was on a certain corridor, some corridors only had 1 carer, some corridors had 2 carers. The corridors that were smaller corridors which had up to 12 people on them, that was just a 1 person [allocation of staff], so I had to look after 12 people by myself.” – Agency care home worker, England

Some contributors described agency staff having lower levels of training or being entirely new to care work. This meant existing care workers had to spend time training agency staff because they did not know how to meet the specific needs of the people they were supporting. This was often frustrating, leaving care home workers with even less time to deliver the necessary care.

 

Janet’s story Janet worked in a care home providing one to one care for people with brain injuries. When the pandemic started, a lot of staff left the care home as they were frightened and the care home’s nursing staff were sent to support the local hospital. This led to significant staff shortages. Janet found that recruiting staff was difficult throughout the pandemic and these challenges still continue. Her care home relied heavily on agency staff, but this added to Janet’s already large workload as they required more support and training.
“	It was really hard to get new staff, so we ended up with a lot of agencies…that was hard because you weren’t just doing your job, you’re trying to tell an agency person how to do theirs as well. That was quite a strain.”
Janet had to train agency staff on care home procedures, Covid-19 protocols and on individual residents’ specific needs. She also had to monitor them to ensure they were following these guidelines and protocols. This meant juggling her own duties while supervising and supporting agency staff, adding more strain. There were many cases of agency staff not turning up for their shifts, meaning permanent staff were expected to work double shifts to ensure that care was delivered.
“	Some agencies didn’t always turn up when they were supposed to turn up. Or an agency nurse did turn up and hadn’t got a clue how to do things.”
Although Janet and her team continued to deliver good quality care to residents throughout the pandemic, the overwhelming workload became intolerable at times. Many of Janet’s colleagues working at the start of the pandemic have since left due to burnout and the challenges faced during the pandemic.

 

Virtual and remote appointments

Other contributors shared how colleagues felt so stressed and burned out that they could no longer continue working and chose to leave the workforce. This meant permanent staff were frequently working with new colleagues, and this was damaging for team morale.

“	The staff turnover was horrendous, we had new carers coming in every day, [which was] difficult for infection control and for staff, to meet new people every day meant we didn’t really have solidarity with one another. It felt like we were disposable.” – Registered manager, England

Changing working patterns

Many social care professionals changed their working hours and shift patterns during the pandemic to ensure they could support people with care and support needs. Contributors said they worked long hours with very few breaks and told us about the toll this took on them and their families.

“	I worked extremely long and tiring hours due to the lack of staffing, where staff had to leave because they were vulnerable [or had] childcare issues [I was] working up to six days and nights a week. Working so hard that my family’s needs came second.” – Care home worker, England

Care workers, especially those in care homes, also had to change their working patterns so they could socially distance at work. This reduced how much time staff could spend together, further eroding team morale and leaving care workers feeling alone and isolated, even when working with others.

“

We had a staff office but because of the space that we had available – because this is a care home it’s not as spacious as the general hospitals – there was a restriction on how many staff would be in attendance at any time to just restrict the spread of the Covid [virus].” – Care home worker, England

“

It was difficult for the staff as well, not to have their breaks together. For such a small home we tend to sit down at 10 o’clock and have our breakfast together. But we were having to stagger it so that some staff were on that table [and] some staff were on [another] table. They found it difficult because they couldn’t talk to each other.” – Registered manager of a care home, England

When staff tested positive for Covid-19 or were unable to work due to sickness or burnout, staff rotas had to be amended. This often meant those who were working had to do longer shifts or take on larger workloads to cover for colleagues. Some contributors felt this led to unsafe care for residents.

“	Staff were frequently unwell as they were often catching Covid…the care we gave did not feel safe and we did not feel safe.” - Care home worker, England

“	It wasn’t a question of, ‘Well, I’m not doing that [longer shift]’. It was, ‘We’ve got no staff, that’s what you’re doing’. You haven’t got a choice, people need looking after, don’t they?” - Care home worker, England

“	The quality of care was rushed, because you’d got less staff. So, you had to pack more work on staff. You’d have to ask staff to pick up extras on their days off. You didn’t have days off because you weren’t allowed days off, because you’d got care to deliver.” - Care home worker, England

Some care workers were unable to continue working when they were required to shield or isolate. This was hard for them emotionally if they wanted to continue providing care and knew their colleagues were under pressure. Others experienced financial impacts, especially staff on zero hour contracts, who experienced loss of income when they were not working. Even when they could work, those on zero hour contracts were concerned about the potential loss of income if they caught Covid-19.

“

I was working in a care home in March 2020. At 63 I was classed as vulnerable but couldn’t be furloughed and couldn’t afford to stay off work and shield…I got Covid and was unable to work at all for a while and eventually was able to do 1 shift a week but couldn’t do anything at all following the shift. It took me more than a year to get back to something like normal fitness. I was on a zero hour contract, so I had no sick pay and lost a lot of income.” - Care home worker, England

“	I worked as a home carer right through Covid, working up to 70 hours plus a week, I caught Covid four times, each time meaning I was off work for 10 days with no pay as we were on zero hour contracts.” - Domiciliary care worker, England

“	I got a letter from my GP saying that I’m at high risk if I caught Covid and was put on furlough for 3 months. Then I spoke to my doctor. I explained that I’m very bored at home, my workplace has measures in place, and they did a risk assessment so that I went back early.” – Care worker, England

Some contributors described working patterns changing at short notice or with no warning at all when colleagues unexpectedly did not attend work. This often meant contributors had to continue working at the end of their shift until someone else could cover. This brought additional pressure and stress and a sense of being let down by colleagues, in turn straining working relationships and reducing morale.

Changes in how domiciliary care was provided

Staff shortages were particularly challenging in domiciliary care (providing support to individuals in their homes). Contributors told us how staff shortages meant that staff could not visit the homes of people with care and support needs for as long or as often as they would have liked. Before the pandemic, this type of care would usually include an element of social support, but the focus shifted to covering essential personal care only.

“

n terms of my care, it dropped to a very skeleton – they cut out what they called everything that was non-essential. So, they only came in and did the absolute minimum, as far as personal care and hygiene and things like that were concerned. They wouldn’t take you out or go shopping, or anything like that. And they tried to shorten calls and things to minimise exposure.” – Person with care and support needs, England

“	hey couldn’t stay long with you, so they would come in for a very short time. I didn’t blame them because they had so many people they had to look after.” – Person with care and support needs, England

“	“We reduced our service as well. For example, four visits a day for a person. So, with the consent of the people we care for, we made it two visits, the necessary visits for the personal care.” – Domiciliary care worker, Northern Ireland

Domiciliary care staff also felt more responsible for people with care and support needs who were living on their own during the pandemic. Without contact with family and friends during lockdowns, people living alone often became more isolated. However, domiciliary care staff had less time to spend with people and this meant they could not offer much social interaction. Many workers felt they were letting people down because they had to leave so quickly. This meant they felt frustrated and guilty about not providing the quality of care they wanted.

“	No hanging around, no chatting too much after the essential care was provided; it was just move on to the next one. Yes, it was quite limited, if I’m honest, it was quite cruel.” – Domiciliary care worker, Wales

“

I think it’s not fair on the client because they’re already elderly. They’re already lonely…we have 20 clients and we have to just [say] ‘Here’s your dinner, sir, do you need anything else? Here’s your cup of tea. Do you want to watch the TV? Should we put the TV [on]? Okay, we’re going to wash your cups, bye’. You’re feeling guilty.” – Domiciliary care worker, England

People with care and support needs said staff shortages meant care providers were less flexible about the timing and delivery of their care. This was disruptive for people with care and support needs and they found receiving only minimal support stressful and worrying.

“	I only had one carer during the pandemic…because a couple of my regular carers had health conditions of their own…so they weren’t allowed to work. So, [my] care support was down to an absolute minimum.” – Person with care and support needs, England

There were also times where domiciliary care workers would arrive late or would not come at all. This meant people with care and support needs had to make substantial changes to how they lived, and this affected important aspects of their lives, such as how they slept.

“

[The carers were] supposed to come at 7 o’clock in the morning, [but] sometimes they didn’t come until half 10, 11 [am]. So, if I had a work appointment, I wouldn’t go to bed the night before. I’d sleep in my chair for days and days on end, because I was too scared to go to bed in case the carers didn’t get me up.” – Person with care and support needs, Wales

Some domiciliary care staff gave examples of loved ones not wanting care to be offered to a family member with support needs because they wanted to protect themselves and the person they cared for from Covid-19. Care staff were concerned about the increased burden this placed on unpaid carers and the impacts on the wellbeing of people with care and support needs. For instance, staff had worries about individuals who needed to be hoisted but whose families had not received training in how to do this safely. In some cases, last minute refusals by families resulted in domiciliary care workers being turned away at the door.

“	Some families wouldn’t want us even in there: they’d need the care but then they’d just be like, ‘No, well, you’re not coming in today’ because people were scared [of Covid-19 transmission].” - Domiciliary care worker, England

 

Cyfathrebu

The pandemic changed communication within the adult social care workforce and created new pressures to support communication between families, friends and people with care and support needs. 

Staff were responsible for communicating with family, friends and unpaid carers and keeping them updated, particularly during lockdowns, as mentioned in Chapter 2.  Social care professionals were essential for organising telephone and video calls.

“

Staff communicated with families through phone calls or video calls.…they actually called a lot, I feel like, during that time. Because you found a lot, the families were the ones always quite panicking to make sure relatives are okay, hoping that they haven’t caught anything, or hoping they have not tested positive for Covid. So, there were a high amount of phone calls constantly.” – Care home worker, Wales

Staff used phone or email to provide regular updates on the health and wellbeing of the people they cared for. We also heard examples of care homes setting up WhatsApp groups for friends and family and some sending out weekly newsletters. 

“

[We updated residents’ families] mainly by telephone. We then set up a WhatsApp group where we can identify any minor needs that we can send families a message saying, you know, ‘Here’s a picture of mum doing an activity’, or ‘Mum needs some shower gel, if you could pop them in.’” – Registered Manager of a care home, England

Social care professionals faced a stressful ongoing dilemma when trying to balance the clear value of supporting communication with loved ones with providing routine care in the context of staff shortages. The regular telephone calls, updating WhatsApp groups and organising online meetings involved extra work which added to the pressure on the workforce.

“

The only role change I’d say was just trying to promote the wellbeing of the residents and reassure families constantly. You know, the phone would ring more often, just from families, friends, just wanting to speak to relatives, residents if they could. Or just wanting an update on the guidance and visiting procedures. And so, I think you were certainly answering the phone a lot more and dealing with a lot more questions and trying to reassure. Yes, so, I suppose in that respect, I wouldn’t say hassle, but extra work that was added.” – Care home worker, England

Social care staff used digital tools – sometimes for the first time – to communicate with colleagues. This included Microsoft (MS) Teams, Zoom and WhatsApp. 

“	We never knew anything about Webex, we never knew anything about [MS] Teams, we never knew anything about Zoom [before the pandemic] and very quickly we had to find a new way of communicating.” – Care home worker, England

“

We had daily meetings every morning at 9:30 via MS Teams where we’d report back what was happening at our end and we’d have this daily phone call, just to get an idea of where we were, whether we’ve got enough supplies. We’d go through staffing and that’s how we’d receive the latest guidance as well.” – Registered manager for domiciliary care, England

Some contributors discussed the benefits of communicating online. For example, domiciliary care staff and community nurses were positive about how this reduced travel time, while others were able to meet a wider range of colleagues. These ways of working and the benefits have continued since the pandemic.

“	[At] the MDT [multi-disciplinary team] meeting, we used to go in person to the town hall to meet, but now, everything is online. It’s a positive thing: we can save…travelling time [and] money [and] we can involve more people in the Zoom meeting.” – Registered manager, Scotland

“

We all learnt how to use Zoom and [MS] Teams and different things like that and change the way that a lot of us work. I think there are things that have come out that have improved people’s skills, their work-life balance, things they’re doing day to day. People are maybe travelling less and, you know, adapting more to things.” – Community nurse, England

 

Taking on additional responsibilities

Staff shortages meant many social care professionals had to take on additional roles and responsibilities. We heard how social care professionals took on tasks that would usually be the responsibility of healthcare professionals (detailed in Chapter 7), as well as responsibilities at end of life (see Chapter 4). 

In some care homes, social and group activities such as yoga and arts and crafts were delivered by external providers prior to the pandemic. This meant social care professionals often took on the additional responsibility for these during the pandemic. Staff wanted these to continue to support wellbeing and social engagement among residents. Care home workers said it was particularly challenging to juggle social needs alongside the demands of delivering personal care, all while maintaining infection control measures. 

“	We would try as often as we could to do [social] things, but…when you’re working and doing personal care and whatever [else you have to cover to meet people’s basic care needs] there’s only so much social activities that you can do.” – Care home worker, England

Care home managers also told us how other staff, such as kitchen staff, housekeepers, cleaners and porters, sometimes had to deliver care or share responsibilities to make up for staff shortages, when staff were absent at short notice.

“

I had to take cooks out of the kitchen to deliver personal care because when they started testing people, it was when you were off for the 14 days, I had 35 staff in one day go down, I have patients who had Covid, families weren’t allowed to visit, which would have been fantastic to help us out. So, I remember having to [take] staff out of the kitchen, I had to take staff off cleaning duties [telling them], ‘I need you to do personal care’.” – Registered manager of a care home, Northern Ireland

“	We did have to work short [staffed]. The day when eight [staff] tested [positive], I came in, the team leaders came in, housekeepers became kitchen staff. So, we all had to muddle through.” – Registered manager of a care home, England

Social care professionals told us how managers and supervisors provided direct personal care to fill gaps in rotas. However, this meant managers were not available to respond to problems or issues.

“	Sometimes, they [supervisors] would have to step in to do our role as support workers, which then means there’s less supervisors to go and speak to if there’s an issue or to respond if there’s an issue. It definitely would create a lot more strain.” – Support worker, Northern Ireland

When loved ones were able to come back into the care home and visit residents, cleaning and disinfecting became even more important and this took time.

“	When the visit was done, you’d then go with backpack spray and spray everything, put the air con in there for half an hour and then you’d have visits booked in, back-to-back.” – Care home worker, England

 

Support for the workforce

The mental wellbeing of social care staff was affected by how valued and supported they felt during the pandemic. Being valued by their employer, the people they cared for, the wider community and the government made a real difference to contributors who worked in social care. For example, some care home workers received wellbeing checks, while others received gifts from their community. These gestures helped care workers to feel valued and appreciated and motivated to continue, despite the pressures on them.

“	We also got only little token gift[s], but things that were really nice…as we collected PPE, we collected a box of chocolates. Through the post we were sent a little token that said, ‘Sending you a big hug’.” – Care home worker, England

Professionals who did not feel valued told us about the resentment and anger they felt because they were not properly supported.

“	Looking back now I’m angry. I was angry and frustrated with my work because they did nothing for me to help me, I don’t think. I have those troubles like anger and frustration thinking, ’Was this all done properly?’” – Social worker, Scotland

Some care home managers told us how during lockdowns support from their head offices or other sector groups became limited. This contributed to feelings of isolation, as they often had to work through complicated challenges with little support.

“	As a manager it was very difficult when we were on lockdown, I couldn’t have any visits from head office, so it was literally just me and I had no one coming in to support me and I had to support everybody.” – Registered manager of a care home, England

Social care professionals described feeling socially isolated during the pandemic. The country shut down very quickly and this contrasted sharply with the need for social care professionals to continue their work, often with even greater demands on them than before the pandemic. This led to a feeling of distance from the rest of society, where many people were furloughed or started to work from home.

“	We used to hear that the people who had to stay at home were fed up at home but all we really wanted to do was to stay at home, but we couldn’t stay at home because we had to come to work, our residents needed us.” – Registered manager of a care home, Northern Ireland

“	It just seemed to be very confusing for a long time, for the rest of the country, because they were locked down, it was fairly simple for them. But our workplace wasn’t – we were business as usual but with no guidelines or framework to help us.” – Healthcare worker, Scotland

Some social care professionals felt they were not included in the public demonstrations of support for health and care professionals, such as the ‘clap for carers’. They said there was little appreciation or understanding of the pressures they faced at work.

“	I felt very much that people were rattling saucepans and things, but they wouldn’t really want to come anywhere near us. So, it was all a bit tokenistic and we felt abandoned.” – Domiciliary care worker, England

“	The NHS were not the only heroes. The quiet, underpaid, overworked, undervalued, overlooked domiciliary care workers were and still are [heroes too]!” – Domiciliary care worker, England

Despite all the pressures and the challenges and the ongoing impacts of these, people who worked in social care in the pandemic also described the pride and satisfaction they had in the contribution they had made during the pandemic.

Isabella’s story Isabella works as a senior care worker in a residential care home for people with dementia in Wales. She has worked at the home for 14 years. When the pandemic started, the registered manager of the care home was stranded abroad due to travel restrictions, while the deputy manager and administrator were off sick with Covid-19 symptoms. Soon residents and staff also began to have symptoms.   One week before the government mandated lockdown, Isabella spoke with the care home manager, who was still stranded abroad, and they made the difficult decision to lockdown the care home.  That week, their first resident died from suspected Covid-19. Isabella had to break the news to the family over the phone, which she found deeply upsetting. Healthcare professionals refused to come to the care home to verify the death, which was also greatly distressing. Eventually, the death was confirmed via video call. Later that day, undertakers arrived in hazmat suits, which frightened staff and other residents.
“	No one would come out to verify his death, after 5 hours his death was verified via video call, I called the undertakers and they asked if he had Covid symptoms which I replied yes, when they came to collect him they looked like space men, it was such an undignified death, we didn’t get to give our usual end of life care, no staff lined up to give him a send-off as we normally would because we had no staff, the other residents were scared.”
This death was the first of many more over the coming months, which was an emotionally demanding and intensely pressured time for Isabella. The care home also struggled with illness related staff shortages, fears of catching Covid-19, single parents struggling with childcare due to school closures and others shielding because of underlying health conditions. Consequently, Isabella’s care home had to rely on agency staff, which complicated infection control as these staff worked in multiple different care homes. Isabella faced the constant challenge of managing families desperate to see the care home residents. She had hoped the lockdown would offer some respite, but the demands simply shifted. The phones rang continuously with calls from families struggling to connect with residents through delayed video calls or unanswered phones and feeling frustrated and angry. At one point, Isabella worked 23 consecutive days. During this time she was dealing with PPE shortages, unexpected hospital discharges in the middle of the night and residents feeling frightened and abandoned. Healthcare professionals were unable to make visits to the residents. This left Isabella feeling abandoned and she considered quitting several times.
“	It was hell, I thought about quitting, I felt like we were on our own, health professionals didn’t want to know, mental health teams, dietitians, continence nurses didn’t visit anymore.”
The long term emotional impacts of the pandemic remain for Isabella, particularly when she remembers the distress of residents who did not receive proper end of life care and the families unable to say goodbye.
“	I could go on and on and people say it seems so long ago now but for me it still feels like yesterday, I feel sad for the ones we lost and that they didn’t get the end of life care they deserved, I feel sad for the good staff we lost because they were scared of getting Covid, my heart breaks for the families that didn’t get to say goodbye and I’m sad for me being stuck with the memories of the worst things I’ve ever had to endure with barely any support from those that should have.”
At the same time, Isabella is incredibly proud of what she achieved during the pandemic.
“	I still feel very emotional now talking about Covid and working through it in the care sector, I feel privileged and saddened at the same time, it’s one of my proudest achievements in life, but at the time it felt like it would never end.”

 

Ongoing impact of the pandemic

Some social care staff told us that, because of working during the pandemic, they contracted Covid-19 and went on to develop Long Covid. This often continues to have a damaging impact on their lives. For some, there were strong feelings of blame and anger towards their job, the conditions they worked in and the social care sector. These contributors felt that if they had not been working in social care, they would not have been at such a high risk of catching the virus. Some can no longer work, and others are restricted in the type of work they can do or the hours they can work.

“	I’ve got Long Covid. I wouldn’t have had that had I been protected. That’s the bottom line. I most likely wouldn’t have got it, because I’m a hermit. So, I wouldn’t have left the house.” – Domiciliary care worker, England

“

It takes me a long time to do things around the house. My husband does the cleaning and cooking. It takes me a long time to have a shower and get ready for the day. I used to go out for walks, but I can’t do it anymore because of my breathing and my body is weak. I feel very let down by a lot of people who could have done a lot better.” – Care home worker, England

“	I now cannot push wheelchairs or do personal care. My workload is limited. So, I now only have an 18.5 hours contract as I cannot work full-time anymore.” – Care worker, England

Those living with Long Covid were also frustrated and angry that they were not being offered enough longer term support. They highlighted the disparity between the risks they took and efforts they made while working during the pandemic and the lack of support available for them now.

“	People with Long Covid have just been abandoned, that’s how much of [a] hero we were, that we just don’t matter now…I think it’s left a very post-traumatic stress kind of flavour to a lot of people now.” – Care home worker, England

Sabina’s story Sabina lives in England and works as an occupational therapist. Before the pandemic, she helped people with mental health conditions access support and engage in daily activities in the community. Once the pandemic started, she was supporting people with more complex care needs in a rehabilitation unit.  Sabina caught Covid-19 and went on to develop Long Covid, which has been life changing. She feels very angry towards her employer and the health and social care system because she feels completely unsupported.
“	I’ve gone on to develop Long Covid, which has changed my life and that might not have been the case [if I hadn’t been working there during the pandemic…] I just feel that we were let down, because the building was an old building, [it] wasn’t fit for purpose really [with ventilation]. They could’ve at least provided an air unit of some description to bring in fresh air and [minimise] the droplets and transmission [risk].”
“	It was a privilege to help people, but I’m exhausted and it’s frightening…I feel that we were unsupported from the higher echelons of management, really…We were forced into situations that maybe we wouldn’t have otherwise been in.”

Some of the workforce developed other physical illnesses they linked to the pressures of working during the pandemic. For example, some contributors believe they developed diabetes as a result of a poor diet, while others say they have experienced longer term vulnerability to viruses. We also heard other stories about life changing health conditions which contributors felt were caused by the stress of working during the pandemic.

“	By the end of lockdown, I was really poorly and I actually got diagnosed with diabetes. Because I was working so many hours [and] had very little sleep, I was living on junk food.” – Care home worker, England

“

I had a stroke [in] November of last year…I’ve lost some of my eyesight and I ended up in hospital for a few weeks…the impact of the last four-and-a-half years on so many of us in these kinds of roles has been enormous. My physical and mental health has suffered dramatically as a result.” – Care home worker, Scotland

Other social care professionals said that while they had managed to cope during the pandemic, they only realised the mental toll it had taken on them once the most chaotic periods of the pandemic had passed.

“	[The] mental challenge that I faced, as things wound down, was as a result of what we all went through…we thrived off of the emergency of having to deal [with it] and respond to things [then], but it took its toll some years later.” – Registered manager, England

“	I had a nervous breakdown in October last year and lockdown and working in a care home through Covid was a major contributor to that.” – Care home worker, England

 

 

7 Access to and experience of healthcare services

Ability and willingness to access healthcare

Lockdowns and pandemic restrictions led to a reduction or delay in access to routine healthcare services. Unpaid carers described experiencing additional worry and frustration when services were difficult to access. Some said they struggled to get in contact with GPs while others were very responsive. Some other contributors were frustrated by the time and effort it took to arrange appointments for the person they cared for.

“	They [GPs] were great. They would be straight back on the phone to us once we’d phoned. No issues there.” – Community nurse, England

“	We didn’t have much luck with getting through to the [GP] surgery, that could sometimes be a half an hour wait to get through to the surgery, which we found frustrating.” – Unpaid carer, Wales

“	I was annoyed, thinking, ‘What’s going on?’. It was just waiting times and it was frustrating back then. Now, when you look at it, it was new for everyone and you’ve got to think about the big picture.” – Unpaid carer, England

Many people with care and support needs had long term health conditions and relied on regular ongoing treatment, such as physiotherapy, podiatry, mental health or other community services, to maintain their health and wellbeing. Appointments for healthcare services which had to be provided in person were rescheduled, postponed or cancelled, sometimes at short notice. This led to contributors’ health deteriorating and their social care needs increasing as the pandemic went on. This made those with care needs and their unpaid carers feel anxious. Social care staff shortages exacerbated the impact of this (as detailed in Chapter 6).

“

I had no physiotherapy for a couple of months I think, during the height of the pandemic, which was really difficult for me to manage because, obviously, without mobility and things like that, my condition deteriorates, so then that puts more pressure on my care team at that time.” – Person with care and support needs, England

“

A week or two into the pandemic her psychiatrist [called] to say that they wouldn’t be continuing. They couldn’t justify it because it wasn’t essential. They would up her anti-psychotic drugs [and] she would occasionally have a relapse. It was really frightening – horrible for everybody. We remonstrated and begged but they said ‘No, no, no.’” – Loved one of a care home resident, Wales

“	Things like podiatry and all that sort of stuff, that went out the window. There was none of that.” – Unpaid carer, England

Stories from Stockton-on-Tees and Wrexham We also heard similar experiences at listening events with social care staff in a learning disability service in Stockton-On-Tees and a nursing home in Wrexham.
“	We had people that had serious conditions like epilepsy; their appointments were being pushed back.” – Care worker in a residential care setting, listening event, England
“	We never saw a doctor. They just think about the [care home resident’s] age and don’t bother.” – Care home worker, listening event, Wales

Sometimes contributors were trained to administer routine treatments, such as injections, for themselves or those they cared for.

“

The one major thing, I have several quite major health conditions and one of them is [a] very long term chronic skin issue. And it got to a point where I had to have almost regular injections. So, a course over six months, once a month. Now, I’d just started a course when the lockdown happened. I got a phone call from my nurse, saying, ‘Right, we’re not sure we can do them at the minute. We’ll give you a call within a week to say how we can carry on administering this medication’, and they ended up, my wife and my daughter had an hour’s tutorial via Skype with the nurse in how to give me my injections and they were delivered to the house.” – Person with care and support needs, England

People with care and support needs were severely impacted by reduced access to diagnostic appointments and treatment for life threatening conditions, such as heart problems or cancer, during the pandemic.

“

Regular appointments were all stopped, for just every other need was stopped because everything went concentrating on Covid. So, it obviously impacted appointments, just for regular [appointments], for a heart scan or just an operation, they might have been due was all cancelled. Obviously, that had a massive impact on certain patients, yes.” – Healthcare worker in a care home, Northern Ireland

“

We have a lot of patients that are undergoing cancer treatments and things like that. A lot of the patients, their treatment got stopped during the pandemic and then after the pandemic it got started again. But by that point, the cancer had just spread. So, for example in situations like that, would those patients be at that point if their treatment had not been stopped at that point, or would they be living life with their cancer in remission and being able to get on with their life?” – Healthcare worker, England

Contributors were stressed and anxious due to difficulties accessing emergency healthcare. People were encouraged to stay at home unless absolutely necessary, even if this meant they could not access the healthcare they needed.

“

Hospitals would [only] accept emergencies, because they knew that… bringing elderly patients to the hospitals was exposing them. So, they had to take particular extra measures, when it came to the admission regime. If it was anything that could be managed within the community, they would rather bring paramedics to the care home and have them check out the patient.” – Care home worker, England

“

I mean I already knew that A&E was busy because, having come from there, from [name of local area], there must have been about 40 people and that was at half one in the morning, two o’clock in the morning. So, I knew it was going to be a wait and I even tried to put him onto an ambulance, thinking that they had a quicker route in. And they said no, there were 11 ambulances outside, all with patients on board, all waiting in the same queue to get into [A&E]- …my heart sank at that point. And I feel that it was only my tenacity in A&E that got us an adequate solution.” – Unpaid carer, Wales

Repeated delays to appointments left people with care and support needs feeling forgotten. Once an appointment date had been agreed, patients were fearful about catching Covid-19 and how this might delay their treatment again.

“

I feel like I was forgotten about to be honest because, like, a lot of my appointments stopped. They were like, ‘Oh, it’s going to be fine, it’s going to move online’ and then some of that stuff didn’t happen. The surgery as well just kept getting put off and then it almost felt like they were being like, ‘Oh, well if you get Covid, well that’s it, we’re not going to be able to help you’. So, that was really scary because, you know, you’re already worried about getting Covid if you’ve got an autoimmune disease. But then it felt like it was being held over my head, like, you’re not going to be able to have the surgery that I really needed, so it was just multiple layers of stress, and it just felt like I was forgotten about on the system.” – Person with care and support needs, England

There was also fear about visiting hospitals, as people understood they were high risk places.  Attending hospital appointments in person was important for managing health conditions but concerns about catching Covid-19 and needing to wear masks meant this was difficult for some patients.

“

I’ve got macular degeneration in both eyes, which affects my sight a lot, I’m having injections every 6 weeks and that’s doing wonders. I was so frightened, I hated going [to the hospital]. But it was the only thing – if I left it, then my eyesight would deteriorate a lot, so I had to really force myself and, because it’s like an ambulance, it comes and picks us up, so I wasn’t the only one in there, there were other people in there, but we all had masks on, even the crew on the ambulance, they always had masks and things.” – Person with care and support needs, England

“	She used to absolutely dread having a hospital appointment. She found it quite distressing. She struggled with the mask, and she was panicking a bit, it was very difficult [to manage].” – Unpaid carer, Wales

Despite the problems with healthcare services during the pandemic, we also heard many examples of high quality care, including some in-person services that continued. Contributors told us about GPs making some visits to care homes in person if needed. However, this often depended on the strength of the working relationship and previous collaboration between the GP and the care home.

“	We were very lucky because the GPs came in and they’d PPE up and tested themselves. We had a great relationship.” – Registered manager of a care home, England

Lucy’s story  In the week leading up to the first lockdown, Lucy’s father, Frank, had a fall in the street. Frank’s health declined rapidly, requiring home care and medical support.  Lucy described the difficulties they had accessing GP support during the early stages of the pandemic.
“	It was really difficult, I mean, the GPs first of all didn’t know what they were meant to do and home calls and what have you, it seemed quite difficult to access. The GP was very reluctant to come out.”
As a result, Lucy and her family turned to the local community nursing team. They built up a relationship to get the support Frank needed.
“	We didn’t really understand how health worked for older people in a community setting until we sort of worked out, well, actually maybe the GP wasn’t the best and eventually we started to understand that the community nursing team were the people who could really help and then, from sort of June onwards, we started to get more of a relationship with them.”
Lucy was very grateful for the regular and ongoing support that the community nurses were able to provide.
“	My father needed more regular intervention which a GP wouldn’t provide anyway. So, with the falls, so the falls carried on, he fell at least twice a month and he would bleed, because he was very thin; he lost a lot of weight. He would bleed, there was no padding on him, I mean, he would bleed quite easily and he had wounds all the time that needed re-bandaging and what have you. And then, through lack of, because he wasn’t moving, he started to get, like, bed sores, basically, so he needed community nursing input regularly who would come and do wound control.”

 

Virtual and remote appointments

When people with care and support needs needed advice from or an appointment with a GP, this usually happened online or over the phone.

“

GP rounds were basically remote most of the time. GPs always wanted to keep an eye on the residents, so I can remember walking round the home with the little iPad and, sort of, putting it in front of the residents and saying, ‘Say hello to Doctor Kennedy’. You know, and they would look at the machine and smile and wave their hands sort of thing.” – Care home worker, England

“	The GP was there to give advice and guidance from the beginning. We didn’t see them really in person, but they were there on the phone and they really supported us through it, to be honest.” – Care home worker, England

However, we heard how people with complex or progressive long term conditions, autistic adults and people affected by dementia found phone and online appointments challenging.   

“

My MS [multiple sclerosis] relapse also happened at the time of the pandemic and I wanted help from the doctors and nurses, I wanted to meet them personally, face to face, but at that time, they were insisting that, ‘Please, don’t come to the hospital and stay at home’, how can I stay at home and look after myself?” – Person with care and support needs, England

“	As an autistic adult, the lack of face to face services affected me and continues to. I struggle to talk on the phone and found that I was refused in-person GP appointments for a period of over two years.” – Person with care and support needs, Wales

Staff working in care homes told us that in-person GP visits were very infrequent and instead used telephone and online calls.

“	Our GP, I did a lot of video calls with them, it was hard to get them to come out.” – Care home worker, England

“

As soon the Covid hit and we went into lockdown, we really struggled to get any doctors, or it’s mostly the doctors that would not come into the care home…they quickly started giving instructions over the phone and giving us more and more responsibilities in terms of how we needed to manage the residents.” – Nurse working in a care home, England

Family members also told us they were concerned and angry about doctors doing assessments remotely as they did not feel confident about the accuracy of the diagnosis. People with care and support needs described how frustrating they found remote appointments because they did not feel their condition could be fully understood without in-person contact.

“	I was angry that the GP hadn’t been to the care home. That they just did a Zoom call. Because when you don’t touch someone or listen to their heart or whatever, listen to the lungs, you don’t know what’s going on.” – Loved one of a care home resident, England

“

You couldn’t actually physically see a doctor or a GP or a physio or anybody, you know? It was very isolating and frustrating because talking on the phone, without a person visibly seeing you, that impacted my mental health because I was so frustrated that I wasn’t being heard or understood or seen.” – Person with care and support needs, Northern Ireland

 

Supporting people with care and support needs to access healthcare

The changes to healthcare put a lot of pressure on contributors and caused considerable worry and stress. While in-person appointments were crucial for people’s health and wellbeing, a few contributors mentioned how frustrating it was to not have their loved one accompany them to these appointments. This was particularly the case where contributors were used to their loved one advocating for them and managing conversations with healthcare professionals.

“

I had to see a consultant during the pandemic, which really didn’t go well because my wife couldn’t come inside the hospital with me, so I had to deal with it myself, which, okay, I can deal with stuff. So, in the end, I just got up and walked out after a little bit of an argument, you know, ‘This is just a waste of my time’. So, I would say, yes, that was an impact and, yes, quite a big one really. My wife could’ve come in and dealt with the situation, she’s a lot calmer than I am.” – Person with care and support needs, Wales

The move to online appointments also meant some people needed support which would not have been needed in person.

“	If you’ve got someone with dementia who doesn’t understand the telephone, how are they going to tell the doctor over the phone that they’re not very well? They’re not…you had to get involved in GP appointments.” – Domiciliary care worker, England

There was also a need for social care staff to support urgent or emergency care. They described feeling stress because of the increase in waiting times for ambulances or other emergency services. Domiciliary care workers told us how they stayed with people with care and support needs while they waited for emergency services to ensure they remained safe. This meant their visits to other people were delayed or cancelled.

“

We had to call an ambulance and obviously you never know with these ambulances how long they’re going to be, so that was difficult because we had to wait quite a long time for them to come and then that has an impact on the rest of the clients that we were meant to see.” – Domiciliary care worker, Wales

We also heard from unpaid carers about long waiting times for emergency care. Not being able to stay with the person they cared for was particularly stressful.

“

The ambulance service said they’d come for him in the morning [but only arrived] at 5 o’clock at night and we were taken to A&E. They wouldn’t let me through and I had to wait at reception until 9 o’clock. I just couldn’t stop thinking about him lying there alone with nobody understanding what he wanted.” – Unpaid carer, Scotland

Stories from Unpaid carers At an online listening event with unpaid carers with Carers UK, we heard that unpaid carers were often not able to accompany those they cared for into hospital. This was deeply upsetting for both the unpaid carer and person being cared for.
“	He had delirium and he was taken away in an ambulance and I wasn’t allowed to go with him. And I knew he would be distraught. I was his memory. He didn’t know his medical history.” – Unpaid carer
“	The care was unbelievably dire and I was not allowed to see her, I was not allowed in the building. She was not allowed out, there was no way I was getting past the front door.” – Unpaid carer

Community and district nurses spoke about following up with patients to find out the outcome of their virtual appointments and making visits in place of GPs.

“

GPs just weren’t visiting at all. My role changed, in that I was expected to be with patients and do Zoom calls with the GP, because they would refuse to come in. As a district nurse, we often expect lots of additional roles [but] we were just inundated with new roles and we just had to get on with it, we couldn’t say no.” – District nurse visiting patients in care homes, England

“	The GPs that we work with, they wouldn’t visit any patients. They wouldn’t see patients in surgery, so everything that they needed to see, they were kind of sending us out to go and see. So, that actually put extra workload on to our service as well.” – Community nurse, England

Support for the social care workforce

The guidelines around in-person appointments and the hesitance of some healthcare professionals to visit people in person led to increased workload for care staff as they had to take on healthcare tasks. Care workers were frustrated and exhausted without support from healthcare professionals, alongside their increased workload (as described in Chapter 6). Contributors told us about picking up tasks, such as changing bandages or dressings, for which they had not received training or guidance. This often made them feel they were putting themselves and the person they cared for at risk.

“	We’re not trained to do that. But you had to. You’d got no choice. That dressing was covered in faeces or had fallen off. You’d got no choice but to do something about it.” – Domiciliary care worker, England

“

With things like district nurses, we suddenly had to become nurses. We’re not qualified and if they were coming in to dress wounds or anything like that or somebody had an injury, a skin-tear or something and we’d naturally call them, we were just being thrown dressings at the door.” – Care home worker, England

“

GPs wouldn’t come, we were suddenly doctors as well. We were asked to take pictures of anything we were concerned about. I, at one point, was telling the doctor what I needed in the way of medication because of what a service user was displaying and they were giving it to me.” – Care home worker, England

The reduced access to GPs also led to anger and frustration among care workers as they continued caring for people in person while it seemed some professions had more flexibility in how they offered appointments.

“	I know it sounds bad, but I was arguing with them [GPs] because we were out there delivering care for people and they were just thinking it was alright to sit in a surgery and say, ‘Well, we can’t come out because of Covid’.” – Domiciliary care worker, England

 

8 Case studies

Case study 1: Challenges of delivering care with limited support from healthcare professionals in a small care home in Wales

Cefndir

We heard from staff and residents from a small residential care home in Wales. The home is a private family-run business, providing care and support for older people, including those with dementia. Each resident has their own single room, some with ensuite bathrooms and others with communal bathrooms. There are also several large communal spaces and organised activities to allow residents to socialise.

Changes in care and challenges related to the pandemic

The onset of the pandemic quickly led to significant changes for both those providing and those receiving care. At the start of the pandemic, residents were isolated in their rooms, with social activities and visits from loved ones no longer allowed. However, with many of the home’s residents living with dementia, restrictions on physical distancing were difficult to implement and maintain.

“

Obviously, when someone with dementia has got Covid-19 you’re trying to isolate them in their room, so they don’t spread around the building. But sometimes we can’t always do that. So, that person, you know, sometimes they’re feeling poorly so they will sleep. But when they’re up then, it’s like they’re out of their rooms. We can’t force them back to their rooms.” – Gweithiwr cartref gofal

Care staff shared how their roles changed during the pandemic. They took on additional responsibilities, including infection prevention measures such as enhanced cleaning, use of PPE and adhering to strict donning and doffing (putting PPE on and off) procedures. They also offered more emotional support to residents and their families. This involved spending more time with residents in isolation and communicating more frequently with loved ones to offer reassurance and address any concerns they had.

“

I can remember one Saturday I came in, there was literally me as a carer. Everyone else had had Covid. I had a domestic cleaner, she was helping me with the residents, she just does domestic [work]. So, the residents were isolating in their rooms, we were taking their meals, a 13 hour shift I did that for, I was run ragged…I was taking trays up to one room, going to another, taking aprons off. The bins outside, it was all time consuming, going into another resident, apron back on. So, it was really hard work.” – Gweithiwr cartref gofal

“	The phone sometimes would be going constantly with family members checking. And they just had to take our word for it that they were okay.” – Care worker

Staff in the home frequently worked extra shifts to cover for colleagues who were unwell or self-isolating. They reflected on the team spirit and togetherness during this time, with staff at all levels working to ensure residents received adequate care.

“	We all mucked in and did extra, stayed on if they were short staffed, so even the manager did it actually, I worked a shift with the manager…she was actually working the floor as well.” – Gweithiwr cartref gofal

 

Access to healthcare

While the care home felt they adapted fairly well to the pandemic restrictions, one of the main challenges they faced was accessing healthcare services for residents. Staff felt they had very limited support and told us about healthcare professionals refusing to enter the care home throughout the pandemic, whether Covid-19 was present or not.

“	I don’t think even the doctors wanted to come in here. If they thought it was serious, they told us just to ring 999. But that’s what it was.” – Gweithiwr cartref gofal

“

I think it was hard in here, as in, like, district nurses and that didn’t want to come in, well, we’re a residential home. And, doctors and things, you know, we needed that care because we’re a residential [home] and we don’t do that. And they didn’t seem to want to come in, we’ve got to do our job, so they should’ve been able to do their job as well. It’s part and parcel of it, so that was a bit annoying.” – Gweithiwr cartref gofal

 

Impact on those providing and receiving care 

The hesitance or inability of healthcare professionals to come into the home added to the workloads of staff and put them under significant strain. They were frustrated and exhausted with the extra tasks they had to do and the constant pressure they were under.

“	It was hard. It was hard going. I wouldn’t say the support was there. As in, medical, like doctors and nurses and things like that. It felt like we were left to it. You know, ‘Just get on with it’.” – Gweithiwr cartref gofal

“

“We had a gentleman who was end of life who didn’t end up in hospital because we nursed him ourselves, which, again, we’re not a nursing home. So, really, we shouldn’t be doing that. We literally had to call the family in at the last minute, so that they could say goodbye and then they had to leave, it was awful, it was absolutely awful. I don’t think I would’ve put up with it if it was my family.” – Gweithiwr cartref gofal

This lack of support left staff feeling abandoned. For example, they shared examples of district nurses coming to the door to hand them equipment and telling them to do medical treatments themselves, despite having no medical training.

“

We had this lady. I can’t remember all the illnesses now she had on her body, but this lady came out in big, massive blisters, right?… So, this happened when it was lockdown and I can remember the nurses wouldn’t come in this building at all. She was handing us dressings at the back door for us to deal with it, myself and the deputy manager, because, obviously, she was one of my residents, so she knew me well and whatever. And me and the deputy manager dressed this lady. I can’t remember now, it might have been every day or every other day, her body top to bottom. She’d have to be creamed, bandaged. We had to nurse her from bed. And it was like the nurses just didn’t want to know. I know everything was locked down and whatever. Even the doctors, it was, sort of, ‘Just get on with it.’” – Gweithiwr cartref gofal

As well as the pressure that came with having to offer some healthcare, staff were also very worried that residents were not getting the care they needed. One staff member shared an incident where a resident with dementia became very sick with Covid-19, leading them to call 999. However, the hesitancy of emergency staff to take the resident to hospital made her question her judgement.

“	They [paramedics] did take her in the end, but I got the impression that they didn’t really want to take her. And then she never ever came back. She never died of it or what have you. But it just made some of us question ourselves, ‘Are we doing the right thing?’” – Gweithiwr cartref gofal

Their increased workload and staff shortages left staff concerned that they were not spending enough time with residents. While they did the best they could, they were worried about how lonely residents were during long periods of isolation and about the impact of limited social interaction and stimulation.

“

We tried to do what we could, but…it wasn’t always [possible], if I’m being honest. If we had skeleton staff as well and there was no staff to get in as such, we had to just do what we could do. We did try and do a few things with them. Whether it was bingo or something, but it just depends on if we were having good days, bad days, what the staff situation was like.” – Gweithiwr cartref gofal

“	It’s bound to have an effect on their [residents] cognitive function because they’re not doing as much as they should be doing. We would try as often as we could to do things, but there’s only so much when you’re working and doing personal care and whatever.” – Gweithiwr cartref gofal

As most of the residents were living with dementia, staff felt that many of them had a limited understanding of the restrictions and the context of the pandemic.

“

The residents here have dementia, most of them. So, I don’t think it impacted on them because they don’t remember. The ones that do, would’ve wanted to see their loved ones and then that would be an impact on them, but when they’ve got dementia, it’s a completely different story.” – Gweithiwr cartref gofal

One resident we heard from shared how the restrictions did not have a significant impact on her experience of living in the home. She felt she and others continued to receive a good level of care with the advice and help they needed.

“	We were not really restricted; we were very fortunate. And if we did have a problem, we’d go to someone and discuss it, and it would be solved or shelved. One or the other, you know.” – Person with care and support needs

 

Case study 2: Experiences of implementing restrictions on movement in a care home in Northern Ireland

Cefndir

We visited a residential and dementia care home based in Northern Ireland. The home is made up of separate corridors, each containing about ten self-contained flats. One of the corridors was adapted to support those in the later stages of dementia. Each flat has its own kitchenette and ensuite bathroom which supports residents to live independently. The home also has shared spaces including a lounge, dining room and kitchen, to allow residents and their loved ones to socialise. The home has a garden with seating and offers different activities and outings. 

Changes in care and challenges related to the pandemic 

With the introduction of lockdowns, residents were isolated in their flats and had meals delivered to them. As the flats are self-contained, residents had their own facilities and did not have to interact with each other. Staff would bring residents to their front doors to play games and sing songs, while maintaining social distancing, to help keep them occupied and engaged.

“

We locked down, yes. But we were very lucky in the fact that all our rooms are all en-suite. So, there weren’t 20 people lined up to go to the loo or whatever. We had our own loo, our own shower, that’s what saved us in here. So, yes, we were in our rooms. But we were served our meals in our rooms, there was no problem about that, you know, and we were well looked after.” – Person with care and support needs

Some staff thought the initial restrictions on movement were excessive for people who already lived together in a care setting.

“

I thought it was overkill initially; you’re putting those people into lockdowns when they live together anyway. If it’s an airborne illness, infection, locking them in their bedrooms is not going to stop [it], considering we’re opening the bedroom doors about 10 times a day. Who’s to say we weren’t carrying it into them? Who’s going to look after them? No, I don’t agree with that at all.” – Team leader

As the restrictions eased, each of the home’s main corridors were ‘bubbled’, each with their own team of staff. Staff would also wear full PPE to minimise transmission between corridors. This allowed residents to come together in the communal spaces to take part in activities and eat socially. If there was an outbreak of Covid-19, residents were isolated in their rooms again.

“

We’ve had every type of isolation in here but, yes, so for quite a while, they [residents] were isolated to their rooms, then we were able to cohort them per household in a corridor, but it changed depending on where the cases were at the time, as to what we could do. We tried to be the least restrictive that we possibly could but yes, there was a period of time, I think that, maybe, it could’ve been 8 weeks, at one point, they were in their rooms, straight.” – Registered manager

The corridor which was already adapted for those in the later stages of dementia was bubbled at the start of the pandemic and stayed this way throughout. As these residents had a limited understanding of the need for physical distancing, it was harder for staff to maintain restrictions. The care home designated two or three staff to work in this specialist corridor, to minimise transmission and so residents did not have to use PPE, the use of which often caused distress and confusion.

“

[The dementia corridor] is built like the rest of the house, where they have their own individual flats, but it doesn’t work. It doesn’t work, so we then had to re-look at how we worked and restrict, I think it was 2, or maybe 3, staff members down there. They’d just rotate it out, so that [corridor] could just be as [it] was and if the residents want to come out, sit in the lounge, it was fine. There was no way we could get round that whatsoever.” – Deputy manager

Impact on those providing and receiving care

Restrictions on movement, particularly in the early stages of the pandemic, had a significant impact on both those receiving and those providing care. Prolonged periods of isolation left residents feeling bored and lonely. One resident told us how during the pandemic he missed the freedom they had before.

“	The only change for me was no freedom at all. I was in my room 24 hours a day for quite a long time. In total lockdown for quite a long time. And the only thing was, not the freedom that there is now to go and have a meal or come out and go outside or whatever.” – Person with care and support needs

Staff saw the impact of this isolation on the mental health of residents. They shared how residents were upset because they were lonely and missed their loved ones.

“	Even though our residents were great… not seeing loved ones that they would have seen maybe 2 and 3 times a week definitely affected them…there were times when maybe some residents were maybe crying because they missed the visits.” – Deputy manager

The isolation that residents experienced had a knock-on impact on the workload for staff, who took on additional roles that meant they were often acting more like family members, as well as professional care workers. They also had to provide more reassurance to relatives who were unable to visit.

“

The residents were so much more dependent on us than they will have been previously, you became a family to them as well as a carer, which is a good thing, I mean, we want to be family to them, but you had to give them more emotional support than what we probably would’ve had to previously. We’ve always had to meet the needs and help make sure they’ve got all their tasks and things met but at that point, it was very much constant reassurance, it was terrifying for them, it was isolating.” – Registered manager

“

An awful lot of people relied on you more. Obviously, the relatives weren’t coming in as much, down to a certain amount of who could come in. You found yourself answering an awful lot of questions, or people asking you questions that you didn’t know the full answers to. Obviously, because it’s their loved ones, things seemed to be getting harder on us. It was like, ‘You’re not doing this, you’re not doing this’.” – Care team leader

For other residents, restrictions on visiting had less of an impact. We heard how, for many, a lot of their relatives were older and also isolating, so it was seen as a shared experience. One resident we spoke to who was not in contact with his family felt well supported and adapted well to isolating by himself.

“

It was a 24-hour lockdown for quite a while. But I didn’t really find it strange. I did for a couple of days, I suppose, but I got used to it fairly quickly. And I’m a sport addict anyway, so there’s always sport on the TV somewhere. And the team that we have here, we’re very, very lucky here.” – Person with care and support needs

Restrictions on movement also made it harder for staff, who also experienced isolation because they could not mix with their colleagues. While the corridor system worked well to minimise transmission and allow residents to interact, the lack of teamwork left staff feeling lonely. 

“

Everybody was working individually. You weren’t so much part of a team anymore. Everybody was allocated their own corridor and that’s where they stayed, where our staff team here would be very social, they’d be having lunches together, breakfast together, so all that was all stopped… I felt very isolated through my working day. Yes, the management team and the senior team would’ve nipped in just to make sure that everything was okay and I felt supported that way, but I missed the teamwork.” – Deputy manager

Staff told us about the lasting impact of isolation on those with care needs. They thought this had contributed to significant mental and physical decline among residents.

“

There was so much decline. So, I would say, from the pandemic ending until now, probably 70% of our residents have changed, where they’re having to go to nursing care or have passed away, so yes, you saw the decline in them, mentally, physically. Some ended up with dementia, some just declined to the point where they physically had to go into nursing care eventually.” – Registered manager

 

Case study 3: Challenges of delivering care with staff shortages in a care home in Scotland 

Cefndir 

We visited a small not-for-profit residential care home in Scotland, offering support to older women. Each resident has their own ensuite bedroom and there are different communal spaces which help to create a sense of community in the home. These shared spaces allow residents to come together to eat, socialise and participate in a range of activities, such as keep-fit classes, quizzes and sing-alongs. There are also several computers for residents to use as well as a large garden. 

Changes in care and challenges related to the pandemic 

The onset of the pandemic and subsequent lockdowns dramatically altered life within the care home. With residents isolated in their rooms, care staff had to adapt to new ways of working, such as delivering meals individually and providing care one-on-one. One contributor who worked in the kitchen and did housekeeping told us about the strict hygiene protocols that were introduced to minimise transmission.

“

Oh, we, kind of, went over and above what the guidelines were. We’ve got a dishwasher; it does clean at a certain temperature but anything that came back from the ladies we had a solution, or we were told what solution of bleach to water ratio we were allowed to use. So, we would then steep them and we always do it anyway after each service or it would be a different procedure if someone actually had Covid. You know, we would keep all that stuff separate. And then, the machine would be emptied, so it was a lot more work.” – Kitchen worker and housekeeper

Staff told us how they regularly worked overtime or double shifts and took on additional responsibilities, such as extra cleaning duties, to ensure residents were well looked after. Senior staff told us how they moved into the care home during outbreaks, to ensure adequate care could continue. This also meant they did not have to use agency staff, with whom residents were unfamiliar.

“

We sometimes moved in for maybe a night or two when we thought things were maybe going to have another outbreak, because we didn’t know if we were going to have staff or not, or we didn’t know the impact of how much help they would need. There was also, like, delivering the care to the clients, so sometimes if you’d got-, if someone’s very ill, you’ve got to concentrate on that person and take someone off their general floor. So, we’d, you know, step in and help.” – Registered manager

Securing enough PPE was also challenging, particularly during the early stages of the pandemic. Staff thought supplies were prioritised for the NHS and spoke of challenges accessing appropriate masks, which led them to secure their own supplies from local businesses. The care home manager also ordered supplies and took precautions before the pandemic had officially begun.

“

I started ordering things up before, you know, we were instructed to do that or instructed from the government. So, we ordered in masks well before we were supposed to and ordered in cleaning gel as well and, luckily, we did that because at one point, we couldn’t get anything because they were all supplying the NHS…We’ve actually got an agreement with a couple of shops and we spoke to them. They got masks in and, instead of selling them to the public, they held them back for me.” – Registered manager

This meant that the care home generally had sufficient PPE, largely because of the proactive decisions by senior staff.

 

Impact on those providing and receiving care

The unique challenges of the pandemic and the resulting increase in workload had a significant impact on staff in the care home. Having to individually visit each resident to provide one-on-one care, while ensuring PPE guidelines were followed, put staff under significant strain. They worried constantly about transmitting the virus and were fatigued from donning and doffing (putting PPE on and taking it off) after each procedure. This led to a breaking point for some.

“	The staff were breaking down crying and just overwhelmed. It was really hard for the care staff, to be fair, because they’re going into rooms and, each time, they were doing a procedure; they were having to change everything and clean everything.” – Kitchen worker and housekeeper

Staff also worried about the impact reduced contact with residents had on the quality of care they were able to provide. Rather than monitoring and interacting with residents in communal areas throughout the day, staff could only spend a limited amount of time with individuals in their rooms. This left them feeling guilty.

“	I don’t think staff shortages did [impact on the quality of care]. I just think that them not being able to be in each other’s company and all in their own rooms was really what made their care less. You can’t spend as much time with them.” – Gweithiwr cartref gofal

Staff shared how residents would frequently press the buzzers for reassurance and company. One contributor reflected on how difficult this was for care staff.

“	They were just bored and a bit down and confused. At the time it was hard on the staff. Yes. Because they’d be pressing the buzzers all the time.” – Kitchen worker and housekeeper

Staff felt the pandemic restrictions had different impacts on residents with different care needs.

“

Especially, well, like, the ones without dementia, that had a toll on them because they would just be thinking about Covid constantly and listening to the news…The ones with dementia, it was just distressing for them, because we had some ladies that would never be able to sit still. Like, they were always constantly walking.” – Gweithiwr cartref gofal

They told us how restrictions have had a lasting impact on residents. While residents used to enjoy coming down and taking part in activities, staff felt they now struggled with their confidence and often stayed in their rooms.

“	Before Covid, everybody would come down and join in. We find people are still in their rooms, not wanting to come out.” – Gweithiwr cartref gofal

While staff struggled with the increased workload, they felt very supported by management and recognised the pre-emptive measures taken to keep both staff and residents safe.

“

I’ve got to say here we were really lucky, [with] the management team. They came down every morning and, kind of, had a talk with us and stuff and it was through his insight [we managed] to get stuff in beforehand. He had, like, masks and everything and aprons and everything. When people were running short, we were very lucky that he’d foreseen that coming.” – Kitchen worker and housekeeper

Residents similarly recognised the care home’s preparedness and the lengths staff went to for their safety. One resident shared how the safeguards made her feel safe.

“	We were very adequately prepared. When I say prepared, I mean, you know, we all had to stay in our rooms, but they had safeguards in the way of the staff with uniforms and protective clothing…It made me feel very safe.” – Person with care and support needs

Residents also praised the dedication of staff and the extra hours they put in to avoid the need for agency staff who were unfamiliar with their care needs. One resident told us how she felt this was especially important for residents with dementia who are more reassured by routine and consistency.

“

That was one special thing I was going to mention anyway because that made such a difference and, not against agency nurses, they’re necessary, but in terms of communication, which I think is so important, they didn’t really know the ladies and perhaps all of the details that dementia people especially need.” – Person with care and support needs

 

Case study 4: Experiences of caring for people with a learning disability and autistic people during the pandemic 

Cefndir

We heard from a private social care provider in the southeast of England, supporting adults with a learning disability and autistic people. The provider manages several care settings, including both registered care homes and supported living housing. All the people they care for receive 24/7 support, including overnight staffing. The care provider supports people of working age (18-64) and older people (65+). 

Changes in care and challenges related to the pandemic 

In the early stages of the pandemic, the care provider implemented a ‘bubbling’ system which allowed residents to interact normally within houses, minimising disruption to their daily lives. Residents were only isolated during outbreaks, where staff would bring them their meals. Movement between houses was restricted and staff took on additional responsibilities within the home when there were staff shortages.

“	So, yes, when they didn’t have Covid, they were able to mingle, obviously, in the house as normal but if they had Covid, then they were to, sort of, stay in their bedrooms and we would bring things up to them and do that way.” – Support worker

At the start of the pandemic, restrictions meant that people with care and support needs were not able to go out to do their normal activities and see their family and friends. We heard how the disruption to their routines confused people with care and support needs. Support workers told us how they organised activities and provided more emotional support to comfort the people they cared for. As the pandemic restrictions eased, support workers took people with care and support needs on regular walks, which helped to support their wellbeing.

“

[We provided] emotional [support] for, sort of, making them feel at ease with everything that was going on because it was all very strange for them to see us with masks on and knowing there’s a virus out there, so obviously, they were quite worried. And then, day to day, obviously when they couldn’t go out, having to, sort of, find in-house activities for them to do and trying to keep them entertained as much as possible.” – Support worker

Senior staff and managers took on additional responsibilities, which included communicating guidelines and restrictions to different teams, providing updates to people with care and support needs and their families and implementing infection control measures. One manager told us how difficult it was to stay up to date with the latest guidance. In particular, the guidance differed for those in supported living and those living in care homes because of how they were regulated.

“

There was quite clear guidance on visiting care settings and care homes and obviously, at the beginning it was all lumped under one guidance and then, eventually, they did split it down. So, we’d have care homes and supported living settings that provide 24-hour care. So, then we ended up having to decipher between different types of regulations and guidance.” – Director

Support workers felt the nature of their roles largely stayed the same, but they had to take on more tasks in some areas of their work. For instance, while they would have typically done the cleaning with residents, during the pandemic they had stricter and more regular hygiene protocols to try and prevent infection. This meant staff had to do more cleaning themselves. Similarly, rather than taking individuals out for weekly food shops, staff had to do this on their own.

“	Basically, more cleaning. It was constant, like, every hour probably, doing all the door handles, light switches.” – Support worker

“	It wasn’t too bad, no, it didn’t make too much of a difference really, on the extra-, obviously, it was more cleaning but then we weren’t going out as much, so it, kind of, wasn’t too much of a problem, yes.” – Support worker

 

Impact on those providing and receiving care

There were staff shortages in the early stages of the pandemic because of shielding and isolation requirements. This increased the workloads for remaining staff, putting them under strain. In times of significant shortage, staff were occasionally split between two different settings (registered care homes and supported living housing). However, to reduce the risk of transmission, the provider tried to restrict movement between settings and instead relied on overtime or reduced staffing levels (when safe and permitted) to fill these gaps. This left staff feeling tired and drained.

“	[Shortages] would mean other staff picking up loads of shifts, quite a lot of overtime and then you’d get very tired and emotionally and mentally drained.” – Support worker

Those with care needs struggled to adapt to the restrictions. We heard how the disruption to routines and lack of structure left residents feeling lonely, bored and anxious. People with care and support needs missed their usual activities and interactions with their support workers, friends and loved ones. One contributor told us how staff would sometimes come and sit in their room to keep them company.

“	Sometimes we used to watch a film in my bedroom, a staff member [and I]. They had the mask on, I remember. Because I wanted a bit of company at the time because I was a bit lonely in my bedroom, on my own. Because I wanted to talk to somebody.” – Person with care and support needs

Staff found it difficult to explain to people with care and support needs why they could not continue to go about their daily lives.

“

I think [it was] a bit of a shock for some of them to begin with. They had to adapt their routines, had to adapt what they did day to day, their activities and for some, they found that quite difficult. A lot of our people are on the autistic spectrum, so are used to that familiarity and, ‘On a Wednesday I go here and I do this.’ etc, so, helping them to understand what is going on in the world at the moment was difficult.” – Director

Residents who did not interact with others as much prior to the pandemic felt they were less impacted by pandemic restrictions. One person with care and support needs told us how they did not feel scared, they just carried on with life and kept themselves occupied with cleaning.

“	My mental health, oh, it’s wonderful. My mental health is wonderful and I’m always so busy inside the building, like take the recycling out, rubbish out. I’ve been doing that for 6 years now.” – Person with care and support needs

We also heard examples of how being in a house with the same people for so long worsened existing personality clashes and caused tensions. People with a learning disability found it difficult to understand changes, leaving them feeling anxious and stressed, which would often then trigger other arguments and other disagreements with those living in the house.

“

They were very up and down emotionally. Very confused. Didn’t really understand why they had to wear a mask, or why they had to socially distance…if one was, like, stressed, or off their baseline, it would then antagonise the other one and they would become stressed. Then it was about trying to calm them down and stuff.” – Support worker

Some people with care and support needs became increasingly isolated to avoid these situations. One contributor told us how they would stay in their room to avoid others in the house.

“	I just stayed in the bedroom, [I] stayed away from the two men. I just stayed in the bedroom, like, doing the cleaning.” – Person with care and support needs

Despite these challenges, staff noticed a reduction in the overall number of behavioural incidents as the pandemic progressed. While the people with care and support needs were feeling anxious and lonely because of the restrictions, they also faced fewer challenges from the outside world. Later in the pandemic, when society started to open up again, many people with a learning disability felt unsettled. Their pandemic experience continues to have a lasting impact on their interactions with the outside world.

“

We then did see a spike in incidents and people being unsettled because, again, another big change and having to reintroduce things to people that they’d not done for so long was difficult. So, that took time and for a lot of individuals, their activity levels are still not at pre-pandemic levels because again, a lot of activities were lost in that time, a lot of community resources were lost. So, a lot of things that they did before the pandemic has therefore changed or dispersed or didn’t really start. So, yes, it’s still building back up, yes.” – Director

 

Case study 5: Caring for people with long term mental health conditions in the pandemic

Cefndir 

We visited a residential care home in southwest England, offering support to people aged 18 to 65 with long term mental health conditions. It is a small home, with fewer than ten residents and a small team of support workers offering 24-hour care and support. Each resident has their own room, with communal bathrooms and shared living spaces for people to socialise. 

Changes in care and challenges related to the pandemic 

As a small home with some residents who did not understand the need for restrictions, adapting to the pandemic was challenging. Staff described how hard it was to implement rules and restrictions in their setting. 

“

I could see why they were in place. Implementing them here with clients that were struggling to fully take on the information, or at least consistently take on the information, that was somewhat of a waste of time really. Trying to lock down the floor or stop people going in and out when they were feeling unwell, just couldn’t do it. Yes, it wasn’t happening here, not really.” – Support worker

The size and layout of the house made it difficult to enforce physical distancing. For example, communal bathrooms meant it was hard to keep residents separate. Rather than attempting to enforce isolation, staff and residents continued to interact within the house, mostly adhering to a one-metre distancing rule when possible.

“

Yes, it was difficult because this is a small house and there’s a load of people here…it was near enough impossible to implement the two metre rule most of the time. It was only when someone was showing [Covid] symptoms that we would, you know, really implement it. We did our best, but it was difficult…The clients always want to come into the office here because this is the hub of the house, you know, they don’t want to feel isolated. They want interaction and it’s a small office, so it was difficult to keep it at two metres. It would be about a metre, yes.” – Support worker

The home had a small staff team so staff shortages in the early stages of the pandemic were often problematic. We heard how many of the support workers left because they were vulnerable and shielding or because they were worried about catching Covid-19.

“	It was very difficult to keep staff. It’s like, we had somebody, she just immediately went off-sick because she didn’t want to take the risk, so she was off-sick, on long term sick.” – Registered manager

In response, they tried to use agency and bank staff for the first time. However, there were ongoing difficulties finding staff as there was such demand from other care providers.

“	We’d never had to use agency staff before and we did, we needed to use agency staff because we had no staff, but there wasn’t any agency staff. We didn’t get one shift covered by [an] agency because they had no staff.” – Registered manager

In the later stages of the pandemic, some staff were uncomfortable with mandatory workplace vaccine requirements which led to more staff leaving.

“	The implied forced vaccination; ‘You will lose your job if you’re not vaccinated and have 2 jabs’. That wasn’t appreciated at all. We lost a couple of staff members because of that.” – Support worker

 

Impact on those providing and receiving care

The home did not have any cases of Covid-19 until much later in the pandemic. This meant they interacted as normal within the home during most of the lockdowns. Even so, the restrictions still had significant impacts on both the workforce and residents. 

Staff shortages had a huge impact on the team, creating pressure and increasing workloads. Support workers told us how they sometimes worked up to three days straight because they did not have the staff to cover shifts. This left them feeling stressed and burnt out.

“	Burnout and stress mostly. Yes, because we were all covering so many shifts. Then somebody would get ill with Covid, couldn’t come in for a long period of time, or get ill and not come in for a long period of time. So, yes, there was a lot of pressure.” – Support worker

Staff told us they felt very unsupported by senior management and unprepared for the challenges they faced. While support workers were working overtime, management offered little help, leaving them feeling isolated and abandoned. They said the organisation’s small size contributed to this.  

“

You know, we’d have an advert out, no-one would apply. We were covering all their shifts. We couldn’t get bank staff and I think, in the end, yes, they [management] just didn’t really know what to do and they just kept fobbing us off and they just kept on saying, ‘Oh, I know, it’s everywhere, it’s happening everywhere. Oh dear, well, we’re really grateful’, you know, and that was their response for ages…our manager at the time didn’t do one extra shift.” – Registered manager

Staff worried about the impact of these shortages on the quality of care they could provide to residents.

“	Yes, it was pretty stressful, pretty stressful with burnout, you had to be mindful of that because then that reflects on how you’re dealing with the clients as well and how long you can continue to do it over a period of time safely.” – Support worker

They felt that residents generally coped well throughout the pandemic, although a few isolated themselves in their room out of fear. Many who were often already socially separate prior to the pandemic adapted to the restrictions fairly quickly.

“	Now that we’re talking about it, I am shocked that the whole thing, the PPE, the tests, Covid generally, didn’t massively affect these guys. If anything, it’s made them more resilient.” – Support worker

“

I actually spoke to one of the guys who said, for him, it just didn’t affect him at all. He’s very socially isolated anyway, the symptoms of his illness mean that he’s very withdrawn and so he doesn’t, kind of, participate in society in that way anyway. So, for him, it was, like, no change, so he said it just didn’t affect him at all and I think that’s probably true, to some extent, from probably most of the clients, because of the chronic nature of their illness and their symptoms, they feel quite, kind of, removed from it anyway but I think it was also scary for some of them. So, it’s like, nonplussed is probably the most positive and then a bit freaked out.” – Registered manager

Many residents therefore continued with their routines as usual. Staff explained that due to the nature of the residents’ mental health conditions, there was only so much they could do to enforce restrictions.

“

We tried and tried again to do things for people, shopping for people and try and keep them here. In the end, they, kind of, did what they wanted to do. And that was probably a 70/30 split, we had people that were literally going out every day. They would follow their routines regardless. So, there was very little point in being annoyed or bothered by it, there was only so much information we could give you repeatedly. Yes, [the pandemic] didn’t have a massive impact, I suppose.” – Support worker

One resident we spoke to enjoyed how quiet the streets were during lockdowns. This created a more peaceful environment with fewer external triggers, reducing stress and anxiety.

“	It was so quiet. It was a joy when you took that hour or two [outside].” – Person with care and support needs

 

Case study 6: Providing intermediate care in a nursing home in the North of England  

Cefndir 

We spoke to staff and residents from a nursing home in the North of England. It is a small, privately owned home offering both residential and nursing care to older people with physical and cognitive conditions. It offers support to those living with dementia, mental health conditions and physical disabilities, with most residents receiving nursing care. 

Changes in care and challenges related to the pandemic 

At the start of the lockdown, the home split into three zones based on a RAG (red, amber, green) rating system reflecting the presence or risk of Covid-19 cases. Each zone had its own team of care workers and housekeepers. If a member of staff needed to enter the red zone during their shift, they would stay there until the end of their shift to minimise the risk of transmission. Due to the limited number of nurses (with two on a day shift and one at night), they were the only members of staff allowed to move between zones.

“

So, we had three zones: the green zone for people that were asymptomatic and tested negative, the amber for the people who possibly could have, or we were waiting on a Covid result for them and then [the red for] the ones that were positive and symptomatic…So, there was six carers and two in each zone but, with the nursing team, with the medication rounds and, you know, all your nursing duties we did have to move between the zones which was worrying but it was necessary.” – Nurse working in a care home

In the early stages of the pandemic, all residents were isolated to their rooms. Communal activities and visits were stopped and meals were delivered individually. As restrictions eased, residents were able to interact with others in their zone while maintaining a two metre distance. At this point, loved ones were also allowed to visit residents through a window. Socially distanced garden visits were then introduced and in the later stages of lockdown, the home constructed a booth in a corridor, allowing residents to hug their loved ones.

“

I think that we could have visiting in the garden, but I remember the weather being cold. So, a lot of them were classed as too frail really to sit out on a frosty day, just to see their relatives. So, a lot of them did it via the window, with the intercom, but, again, issues with hearing, vision and it wasn’t the same as, you know, a nice cup of tea and a cuddle.” – Nurse working in a care home

 

Experiences of intermediate care 

During the early stages of the pandemic, the home also provided intermediate care. This involves providing short term support to individuals leaving hospital who are not yet well enough to return home.

This meant the home received a large number of hospital discharges. Staff told us how they felt added pressure to accept people and were frequently given inaccurate discharge information, receiving discharged patients with more needs than expected.

“

I always have both beds, so I had intermediate care beds and ordinary beds…intermediate care is run by the NHS and the hospital and they pay for the beds, it’s a block booking, almost. I think they felt that they had more power to say, ‘You will take this person’, and not to do anything when it went wrong.” – Director

Staff in the home were also concerned about how well testing protocols were being followed in hospitals and felt some patients were being discharged in order to free up beds on hospital wards.

“

Well, we had four outbreaks in twelve months, in every case, my index patient had been admitted from hospital, supposedly with a negative test and had developed Covid in 48 hours. I’m really sorry, I am really sorry, my question is, did they know how to test? Were they doing it properly?” – Director

The housekeeper shared how the home was effectively operating as an overflow Covid-19 ward for the NHS.

“	We were different then because we opened as a net to take in NHS [patients], we opened like an NHS Covid ward. So, we took people with Covid from the NHS over to here. So, like their overflow ward.” – Housekeeper

 

Impact on those providing and receiving care

Inaccurate discharge information about those transferred to the home’s intermediate care facilities had significant impacts on the workforce and the safety of other residents. We heard how the first outbreak in the home was caused by an individual reported to be immobile and testing negative for Covid-19. However, later that night he was found wandering the corridors and subsequently all residents on that corridor were infected. 

“

This guy arrived late, after the cut off time, and my night nurse helped him to bed, he seemed to be off his feet, we had to hoist him into bed and two hours later, he was found sitting on somebody else’s bed trying to drink her juice having a long chat with her and he had been in every bedroom along that corridor. This man is supposedly off his feet. So, I had to put, at very short notice, one to one staff support on that night. We rang an agency and got somebody in. Rang the hospital the next morning and was told, ‘Oh, we thought he might be off his feet because he’s quite poorly, but we had problems in hospital’. Everybody on that corridor got Covid, he had Covid and that was all caused – luckily, we didn’t have a death – but that was all caused by somebody being sent to me who was supposedly off his feet and he wasn’t.” – Director

These cases placed huge pressure on staff in the home. Monitoring new patients who could potentially risk the safety of existing residents increased workloads and left gaps in support. Staff also spoke of the short notice periods before receiving discharged patients, often only finding out on the day. However, they would only accept individuals if they had a room ready.

“	Yes, I think it was short notice, we might get to know that morning, but we would only accept if we had a room.” – Housekeeper

Restrictions on movement within the home in the early stages of the pandemic had different impacts on residents depending on their care needs. For some, having to stay in their room took a toll on their wellbeing and mental health as they felt so lonely. Staff shared the challenges of reassuring residents who felt confused and isolated.

“

Mentally, I remember a lot of them saying, ‘What day is it?’ Because they’d been in the same room for x number of days and they’d lost a whole timescale, just what day it was, what time it was. And a lot of them said they felt imprisoned, which, in a way, I suppose they were, but, for their own safety. So, yes, mental health for me, trying to reassure them was a tough challenge.” – Nurse working in a care home

However, residents with higher care needs were less impacted by these restrictions. Several contributors reflected on how people with care and support needs often did not have a choice about whether they could leave their rooms even before the pandemic as they needed help to get out of bed and move around.

“	She can’t get out of bed, you know, they’ve got to get her out, but obviously they didn’t take her out and move her over or whatever.” – Loved one of care home resident

“	Housebound, room-bound, bed-bound, anyhow, I can’t get up at all because I can’t bend my knees or anything like that, so [I’m] in bed all the time.” – Person with care and support needs

The impact that was most difficult for residents was not being able to see their loved ones. The husband of one resident, who was bed-bound and had speech difficulties following a stroke, shared the significant impact of family not being able to visit his wife, particularly on how lonely she felt. Before the pandemic, he would visit for 4-5 hours a day and feed her lunch and he felt she missed this support during lockdown.

“	I think that’s the main thing, she missed us coming up…when we used to come, when we first started coming up, that first few years, used to be here maybe 4, 5 hours a day. We’d give her dinner, then we’d give her tea.” – Loved one of care home resident

We heard how another resident with advanced Parkinson’s and dementia struggled to adapt after moving in during the pandemic and missed his loved ones enormously. His wife told us how he tried to run away from the home several times and had to be brought back.

“

He kept saying he wanted to come home and he did actually get out once or twice. Well, the manager at the time thought he’d memorised the number on the door to get out. I don’t think he did actually but, anyway, he did get out and got to the shop up the street and tried to get home. And he did that a couple of times, tried to get home. So, that was a bit heartbreaking.” – Loved one of care home resident

Staff told us about the added worry they felt for the wellbeing of residents and pressure to provide support in place of their loved ones. The difficulties of balancing this emotional support with their day to day roles left them feeling emotionally and physically drained. 

“

There was a period where we went into lockdown and all of the residents were in their room for quite a while. And I can remember going around and some of the residents were so relieved to see you and wanted to have a chat. But you knew subconsciously that time was…short and that you had all these jobs to do. So, you felt torn between reassuring them and sitting with them because you’re the only person that they’ve seen for a while. But, then obviously, your job as well of being able to do medications on time, dressings and all the other routine jobs that you had to do. So, yes, it was physically and mentally draining, just because you were spread thinly.” – Nurse working in a care home

However, they felt the restrictions on visiting had less of an impact on residents who were very old or who had advanced care needs, because they had less understanding of what was happening.

“

It’s weird because they know our faces, they know when we’ve had a day off. They really do. Not all of them, but they really do. So, they, I suppose, relied on us for that friendly face to walk in the room because they didn’t all have their visitors, you see?…But we do have the very, very elderly. They don’t all remember. So, they don’t rely on our faces, some of them, you know?” – Housekeeper