This is the final Every Story Matters In Brief for the UK Covid-19 Inquiry. The Final Every Story Matters record concludes the listening exercise that has been central to the Inquiry’s commitment to hear from those affected by the pandemic.
The UK Covid-19 Inquiry was established to examine the pandemic’s impact and learn lessons for the future. Over 20,000 public responses received through the initial consultation guided the Inquiry’s decision to create Every Story Matters. Baroness Hallett, the Inquiry’s Chair, recognised that formal witnesses alone could not capture every voice affected by the pandemic. This recognition led to the establishment of Every Story Matters as a way of listening to the public and bringing their voice and experience to the work of the Inquiry.
Every Story Matters was open for two and a half years, providing an opportunity for anyone in the UK to share their pandemic experience with the Inquiry. The initiative was designed to allow people to share their stories in their own way and in their own time.
The stories gathered through Every Story Matters were analysed to produce records that helped inform the Inquiry’s investigations. The Inquiry’s legal team used these records in hearings, where lawyers gave accounts of Covid-19 experiences shared by members of the general public. These module records will also inform the Inquiry Module Reports and the recommendations that follow.
Previous records were published to coincide with specific module hearings. This final record encompasses all stories shared through our webform from the entire two and a half year period. It ensures that every story has been analysed, regardless of when it was submitted, fulfilling the Inquiry’s commitment to listen to the full breadth of experiences shared by the UK public.
<strong>The views and reflections presented are those gathered from Every Story Matters contributors. They do not represent the views or findings of the Inquiry, which are set out separately in its Module Reports.</strong>
How the Inquiry listened to people across the UK
To ensure the Inquiry gathered stories from the broadest range of people across the UK, we offered several ways for the public to contribute in a trauma-informed way:
- Online at everystorymatters.co.uk: Where people could submit their experience through the webform. Overall, the Inquiry received over 55,000 stories through the webform.
- Additional and accessible formats: Recognising that a digital-first approach may exclude some, the Inquiry offered additional offline and accessible formats such as paper versions, British Sign Language and a phone line.
- Listening events: The Inquiry held in-person and virtual listening events across the UK with members of the public and groups who were most impacted by the pandemic.
- Targeted research: The Inquiry also commissioned targeted research, to ensure we heard from those most affected by the pandemic. Around 2,200 people shared their story through in-depth interviews and discussion groups.
Every Story Matters also focused on reaching seldom heard groups whose experiences are often under-represented. We specifically reached out to people who might feel overlooked, including younger people (18-25) and older people (aged 75+), people from ethnic minority backgrounds, people living with mental health conditions, LGBTQ+ people and those who were not then in employment.
Introduction
This final record summarises the stories and experiences the UK public shared with Every Story Matters. It provides an overview of the breadth of pandemic experiences and details the themes that most profoundly affected people.
It is dedicated to everyone who has shared a story and to all those groups and organisations who helped the UK Covid-19 Inquiry to hear from so many people. We are truly grateful for your time and support.
Clinically vulnerable people and others who were shielding
People who were clinically vulnerable or shielding shared their experiences of needing to shield throughout the pandemic. They detailed their experience of isolation, challenges accessing health and care services, confusion surrounding the safety of Covid-19 vaccines and concerns about the easing of pandemic restrictions.
Some clinically vulnerable contributors were concerned about the risks of taking any of the available Covid-19 vaccines. They felt there was contradictory information about whether clinically vulnerable people could take the vaccines and the benefits and risks of having it.
Families caring for and supporting children with additional needs
Parents of children with additional needs shared the challenges of finding support for their children and the long-term impact of the pandemic on their access to support, education and overall development. Some families said long periods out of school and limited access to services meant delays in identifying their child’s individual needs and putting support in place.
Contributors also described the impact of the pandemic on their children’s mental health. Extended periods of isolation and disruption to routines led to increased levels of anxiety, worry and depression. Some children became increasingly concerned about germs and death, and what would happen once lockdown ended.
Families living apart during the pandemic
People living apart from family and friends, especially those living alone, talked about how isolated they felt during the pandemic and the impact being separated from family and friends had on them. Some described the sadness of missing significant life events including births, weddings and birthdays.
Many bereaved people described how painful it was being separated from family and friends when their loved ones died. We also heard how long periods of time apart put a strain on many relationships. Some people felt abandoned by their loved ones when they were unable to visit them at home or in healthcare settings.
Health and social care workers
Health and social care workers shared how they responded to the pandemic, adapting their job roles and working patterns. We heard how the pandemic placed huge pressure on health and care workers, who often worked long hours, under immense pressure, with the added strain of reduced staff numbers due to sickness or colleagues self-isolating.
Health and social care workers experienced distressing situations, with much more death and bereavement than they were used to. This has had a lasting impact, with many reporting burnout, relationship breakdowns and some choosing to leave their professions due to the impact on their mental health and wellbeing.
New and expectant parents
Many women told us about feeling unsupported and alone, particularly when their partners could not be present for appointments or the birth of their child. We heard how the guidelines on the presence of birthing partners were inconsistently applied and changed as the pandemic progressed. This meant some women could not have the birthing partner they wanted or were upset when they heard about other women who were allowed someone to support them.
Many women said they felt anxious and low after the birth of their child. Having a newborn baby without the support of family and friends was stressful and overwhelming for some. Other women told us about feeling a sense of unease and confusion about having a baby during the pandemic. They said they worried about their child’s future and how the pandemic would impact their social development.
Parents and carers supporting learning at home
We heard from parents or carers for children who shared how the pandemic both strengthened and strained family relationships. For some, increased time with family during lockdowns and school closures helped them bond and form stronger relationships, whereas for others, increased time together led to arguments, with more conflict than usual and increased stress for parents and children.
Parents and carers also told us how difficult it was to maintain a work-life balance at home, with their responsibilities becoming blurred and overlapping. We also heard about the challenges of digital access, for example some families could not afford a laptop or tablet for each child.
People bereaved during the pandemic
Many people who experienced traumatic bereavement during the pandemic shared the lasting impact this has had and emphasised their anger, guilt and regret that they could not be there for dying loved ones as they wanted to.
Bereaved families shared how they faced frustrating delays with death certificates and problems with mortuary capacities, complicating funeral, burial, and end-of-life ceremony planning. Restrictions on attendance and social distancing at funerals, burials and end of life ceremonies prevented many from honouring loved ones according to their wishes or performing significant cultural and religious practices, leading to increased isolation and intensified grief.
Many bereaved people continue to feel isolated because their loved one died during the pandemic. They often described ongoing, damaging impacts on their mental health and shared how they continue to experience profound feelings of anger, sadness and regret, alongside frustration that others in society want to ‘move on’ from the pandemic.
People concerned about lockdowns
Many people often felt strongly about the impact of lockdowns during the pandemic and wanted the Inquiry to capture their concerns. This included contributors with different views on government restrictions and decision making during the pandemic. Some felt the UK should have locked down sooner, while others said that lockdowns should never have happened. Many contributors felt a sense of anger about high profile rule breaking.
People who contracted Covid-19
People shared how they contracted Covid-19 during the pandemic, including their experiences in seeking a diagnosis. This included some people who were unaware they had the virus until they were tested. Others had clear Covid-19 symptoms, including a continuous cough or sore throat, headaches, continuous aches and pains and fatigue or ‘brain fog’.
For some people, Covid-19 symptoms lasted longer or became more serious; these longer lasting symptoms became known as Long Covid. Many people who continue to live with Long Covid shared how they were, and often are still unable to perform simple daily tasks like getting out of bed or going for walks, have experienced fluctuations in their health and shared how having Long Covid has been very damaging to their mental health. They described feelings of exhaustion, frustration and feeling demoralised as their physical health drastically changed compared to before the pandemic.
People who expressed concerns about the response to the pandemic
Contributors shared concerns about key policy decisions and missed opportunities in government communications, such as the initial lockdown being too slow and failures in communicating about the importance of wearing face masks or in securing supplies of the right type of personal protective equipment (PPE).
Many shared feelings of disappointment and regret about the pandemic response, as contributors linked government actions to damaging experiences including the death of loved ones, poorer mental health, reduced income, relationship breakdowns and ongoing, long-term impacts on education, work and young people.
People who were unable to travel
People who needed to travel during the pandemic shared their experiences of disruptions to travel and the challenges they faced around testing requirements and quarantine. Many contributors had to cancel pre-booked holidays when initial lockdown restrictions were introduced, often losing deposits or payments. Some also booked travel when restrictions were temporarily lifted which they then had to cancel when reimposed.
Some discussed how travel restrictions meant they were separated from family for long periods. Others shared not being able to see family due to differing restrictions across different regions and UK nations. This meant some people had to spend lockdowns on their own without their support networks. Travel restrictions also meant some could not spend time with or support their loved ones when they were ill or at the end of life.
People whose medical treatment was delayed
We heard from people with long-term conditions and from people with non-Covid-19 related conditions whose medical treatment was delayed during the pandemic and the impact this had on them. They gave examples of difficulties accessing GP appointments, as well as long waiting times for emergency care. Others described problems with delays to hospital referrals, cancelled appointments and poor experiences of NHS care.
When contributors were able to access hospital care, some reported poor experiences. This included appointments being cancelled or surgeries delayed for many months and years. In some cases, contributors became so frustrated they sought out private healthcare services instead.
People whose mental health was impacted by the pandemic
People reflected on the profound impact the Covid-19 pandemic had on their mental health. Many shared feelings of isolation and disconnection and the challenges of managing their mental health throughout the pandemic. The frequency and negative tone of news updates and government briefings also added to people’s fears, worsening their feelings of stress and exhaustion.
We also heard how feelings of worry and low mood increased during the pandemic, with many sharing how they developed mental health conditions like anxiety and depression. Some found it difficult to cope with a lack of structure, while others tried to keep busy. People with pre-existing mental health conditions shared how their mental health deteriorated due to added new pressures and disrupted routines. Many found it harder to access mental health support services.
People who shared their experiences of the Covid-19 vaccines
Contributors shared a range of views on the Covid-19 vaccines. Stories included positive reflections about the vaccines with many describing feeling better protected and that progress was being made when the vaccines were introduced.
A number of contributors emphasised concerns about the safety of the vaccines, public messaging and the pressure they felt to be vaccinated. Others told us about their experience of adverse side effects.
People who shared positive pandemic experiences
For some, lockdowns gave them quality time with family they would not otherwise have had. Those who were happy being at home had more time to spend together doing activities they enjoyed.
Contributors described taking up hobbies or focusing on developing new skills. In some cases, this led to a bigger change in their life, such as a new career. Many of these contributors looked back on the pandemic as a positive time for them personally, despite the disruption and huge challenges other people faced.
People who were financially impacted by the pandemic
Self-employed people and small businesses told us about how they lost income and faced financial insecurity during the pandemic. Others told us about the loss of their job during the pandemic, leaving them struggling financially. Many contributors discussed being put on furlough during the pandemic. This left some concerned about a drop in their wages and their job security. Others described how furlough gave them the opportunity to spend time with family and take time for themselves.
Some people became too ill to work. For example, some struggled with Long Covid symptoms while others found it challenging to manage their mental health.
Thank you
We sincerely thank everyone who has shared their experiences. Your stories of the pandemic have been invaluable in shaping the work of the Inquiry.
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/.