Every Story Matters: Adult Social Care Sector – In Brief

The UK Covid-19 Inquiry is an independent public inquiry examining the response to, and impact of, the Covid-19 pandemic to learn lessons for the future.

The work of the Inquiry is divided into separate investigations, known as modules. Each module is focused on a different topic, with its own public hearings where the Chair hears evidence. Following the hearings, a module report is published, which contains findings based on all of the evidence and the Chair’s recommendations for the future.

How Every Story Matters fits into the Inquiry’s work

This summary relates to the Every Story Matters record for Module 6, which examines the adult social care sector during the Covid-19 pandemic. Future Every Story Matters records will focus on different aspects of life during the pandemic, such as children and young people, economic support for individuals and businesses, and impacts across society including mental health, key workers and bereavement.

The Every Story Matters record for the adult social care sector brings together people’s experiences shared with us:

• online at everystorymatters.co.uk;
• in person at drop-in events in towns and cities across the UK; and
• through targeted research with specific groups of people.

Each story is anonymised, analysed and organised into module-specific records. These records are entered into evidence for the relevant module.

Every Story Matters is neither a survey nor a comparative exercise. It cannot be representative of the entire experience of the UK, and nor was it designed to be. Its value lies in hearing a range of experiences, in capturing the themes that have been shared with us, quoting people’s stories in their own words and, crucially, in ensuring people’s experiences are part of the Inquiry’s public record.

Some of the stories and themes in this record include descriptions of death, near death experiences, neglect, acts of omission and significant physical and psychological harm. These may be distressing. If so, readers are encouraged to seek help from colleagues, friends, family, support groups or healthcare professionals where necessary. A list of support services is provided on the UK Covid-19 Inquiry website: https://covid19.public-inquiry.uk/support-whilst-engaging-with-the-inquiry/.

The impact of lockdown restrictions

People with care and support needs and their loved ones told us they were deeply affected by lockdown restrictions.

People living alone felt lonely and isolated. They often struggled with daily tasks such as personal care and household tasks without the support of loved ones and/or with reduced hours of domiciliary care¹.

Lockdown restrictions led to some loved ones moving in with the person they cared for to help them.

People living in care homes also talked about feeling lonely and isolated, particularly early on in the pandemic when restrictions at care homes meant family and friends were unable to visit. There were particular challenges for people with dementia or a learning disability, who were unable to understand why their loved ones no longer came to visit them. We heard how they felt abandoned and their health and wellbeing declined.

Care homes introduced ways of staying connected, such as video calls and window visits, and while some welcomed these as a way to engage with family and friends, many found them confusing, particularly those with dementia or a learning disability. They found it difficult to understand why they could hear a loved one’s voice or see their face on a screen, but they could not be together in person.

End of life care and bereavement

We heard how some loved ones of those who died were unable to be by their side in their final moments. Loved ones feared their family member would think they had abandoned them in their final hours. This traumatic experience has led to overwhelming feelings of sorrow and anger. Many of those who were bereaved continue to struggle with mental health challenges related to not being there to hold their family member’s hand and say their goodbyes in person.

Some families and unpaid carers felt helpless and frustrated during the pandemic as they had to deliver end of life care to the person they cared for in their own home. They faced difficulties accessing professional support, essential equipment and medication.

A number of contributors were aware that the person they cared for had a DNACPR² notice in place and understood why this was needed. We also heard from contributors that in some cases DNACPR notices were applied on a blanket basis to people with a particular health condition such as dementia. In some cases, family members, friends or care staff challenged DNACPR notices. Some contributors shared that conversations about DNACPR notices were conducted insensitively, leading to significant distress for people receiving care and their families.

After the death of their loved one(s), families faced further sorrow and frustration.

Restrictions around funerals and practices around death meant that many could not gather to honour the person who had died or observe important cultural or religious traditions.

We heard that some care workers had to provide end of life care which they had no experience or training in, as healthcare professionals were not able to visit care homes.

Care workers reported being distressed by being with someone when they died, especially when their family members and loved ones could not be present. They recognised the significance of the care they provided and valued the appreciative messages received from families and friends. We also heard that many care workers would work extra hours to ensure that residents did not die alone.

¹ Domiciliary care is care provided in someone’s own home.
² To read more about DNACPR (do not attempt cardiopulmonary resuscitation) decisions see the NHS website: https://www.nhs.uk/conditions/do-not-attempt-cardiopulmonary-resuscitation-dnacpr-decisions/.

The impact of the pandemic on the care workforce

Staffing shortages placed a major strain on the adult social care sector, driven by:

• concerns about virus transmission,
• shielding linked to health conditions,
• self-isolation requirements,
• stress-related absences,
• absence due to Long Covid and
• unease about pressure to have the vaccine.

To fill the staffing gaps, we heard that there was an increased reliance on agency staff.

Care workers adapted their hours and routines to meet rising demands, sometimes leaving their own family to move into care homes for periods of time.

In domiciliary care, fewer and shorter visits meant the focus shifted from meaningful personal and social support to only providing essential care. This was deeply upsetting for both domiciliary care workers and the people they cared for.

While some care workers felt valued and supported by their employers and communities, many of the social care workforce felt unseen and unappreciated.

We also heard about the pressures faced by unpaid carers caused by the lack of support provided by community and healthcare services.

Experiences of people being discharged from hospital into care homes during the pandemic

Care home staff reported receiving limited or inaccurate discharge information, including about health conditions and Covid-19 testing status. Some staff said they felt pressured to accept patients due to hospital bed shortages.

It was reported that, in some cases, inconsistent testing and lack of communication from hospitals left care staff and families feeling anxious about residents’ safety and the spread of the virus.

Some families reported feeling excluded from discharge decisions and other care decisions, often receiving little notice about transfers to care homes.

Experiences of personal protective equipment (PPE) and Covid-19 infection control measures in social care settings

Care providers told us how early on in the pandemic they often had to reuse single use items, ration supplies or source PPE from hospitals, charities and other community organisations or businesses due to shortages of PPE. We also heard that, despite improved availability as the pandemic progressed, contributors continued to be concerned about the quality and suitability of PPE.

Care workers told us how masks obscured facial expressions making it difficult to understand non-verbal cues. This particularly impacted those with dementia or a learning disability and was also an issue for d/Deaf people as it impacted their ability to lip read.

We heard how testing protocols varied across care settings and job roles throughout the pandemic. Some organisations mandated daily testing for staff, while others tested weekly or only for symptomatic individuals. Social care professionals told us how access to tests was essential due to care workers moving between care settings and their own homes.

Care professionals reported significant difficulties with social distancing, often being unable to maintain physical distance from people with care needs while providing personal care, such as bathing and helping with meals.

Access to healthcare during the pandemic

Some care homes told us they felt healthcare services were prioritised over social care services and the main focus was to protect the healthcare system.

Barriers to accessing health and social care services, including in-person appointments such as physiotherapy, further worsened peoples’ conditions.

We heard from families and the workforce 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.

Some social care staff felt that healthcare workers were hesitant or unable to visit due to staff shortages or to minimise the risk of transmission. This led to an increased workload for the care staff who had to facilitate virtual appointments, follow up on treatment and certify deaths.

Access to emergency healthcare was also challenging because of increased pressure on hospitals and fears of contracting Covid-19.

To find out more or to download a copy of the full record or other accessible formats, visit: https://covid19.public-inquiry.uk/every-story-matters/records/