The UK Covid-19 Inquiry has today (Monday 9 September 2024) published its first Every Story Matters record which details the UK public’s experiences of the country’s healthcare systems during the pandemic.
Tens of thousands of contributors have submitted their stories to the UK Covid-19 Inquiry, from which it is producing themed reports to help inform its investigations. The Every Story Matters records will assist the Chair, Baroness Heather Hallett, in reaching conclusions and making recommendations for the future.
The Inquiry’s first Every Story Matters record brings together people’s healthcare experiences. It is published as 10 weeks of public hearings for the Module 3 investigation ‘Healthcare systems’ begin. It covers the experiences of healthcare professionals and patients across both primary care and hospital, as well as emergency and urgent care, end-of-life care, maternity care, shielding, Long Covid and more.
The 222-page record, the product of the largest public engagement exercise ever undertaken by a UK public inquiry, sets out a wide range of experiences of the pandemic including:
- Patients found accessing healthcare during the pandemic extremely difficult and stressful, across multiple settings.
- Bereaved families and friends faced significant challenges in supporting their loved ones at the end of life.
- Healthcare professionals found that planning for care in the event of a pandemic was poor and the speed of the response to the emergency was too slow. They describe the huge and often harmful impact this had, with many lives lost and damaged and imposing an incredible strain on the workforce.
- An absence of good quality, well-fitting personal protective equipment (PPE) left staff, patients and carers feeling vulnerable.
- Restrictions placed on visiting maternity and other healthcare services left patients and loved ones feeling isolated – new mothers, for example, felt lonely and afraid and family members of other patients feared for their loved ones, suffering and alone.
- Long Covid continues to have a dramatic and damaging impact on many people’s lives.
- People considered clinically vulnerable were advised to shield for open ended and often long periods of time, leaving them feeling isolated, lonely and fearful.
The first Every Story Matters record is the product of more than 32,500 people’s stories submitted online to the Inquiry, as well as the themes taken from 604 detailed research interviews with those who were involved with healthcare in different ways during the pandemic, including patients, loved ones and healthcare workers.
The Inquiry’s researchers also drew together themes from Every Story Matters listening events with the public and community groups in towns and cities across England, Scotland, Wales and Northern Ireland. The Inquiry has spoken to more than 5,000 members of the public at 18 such events in locations as varied geographically as Inverness, Ipswich, Paisley, Wrexham, Enniskillen and Folkestone with many people sharing often very moving and personal recollections of the pandemic. More Every Story Matters public events are planned for autumn/winter 2024.
The first Every Story Matters record highlights not only the many life-changing impacts the pandemic had on contributors but also the fact that some are still living with these impacts today.
It’s a big identity crisis; my mum and I were fit, active people, I was meant to be beginning pro-ballet as a career. To go from that to being in bed all the time is massive, at a young age difficult as you are finding out who you are. I’m 18 and still don’t know who I am, four years later. It’s an identity I don’t want.
I don’t think I’ve come back to 100% of how I normally was. It takes its toll. But it’s almost like having this piece of paper that’s nice, and flat, and straight, and then you’ve crumpled it and then you try and straighten out that piece of paper again. It’s still creased up, no matter how much you try and straighten it out.
Many people faced problems accessing healthcare during the pandemic, whether in emergency situations, for acute health conditions, or for more routine appointments.
I have several cases in my mind of people who suffered with benign but limiting conditions, that were very easy to fix had they had access to acute healthcare sooner. But, you know, it was very difficult for them to get access to healthcare, to see the person they needed to.
In the lockdown, people were still poorly. Someone was diagnosed with cancer and couldn’t get an appointment. Don’t neglect people with other treatment needs. The chemo[therapy] treatment was cancelled, the cancer progressed, and they died.
The record contains examples of the devastating losses experienced by those who were bereaved during the pandemic.
I lost my father in November 2021 from Covid-19. He was 65 years old. He had six children, five grandchildren, with a further two joining our family since he left us. He died within six days of a hospital admission. I am still haunted by the thought of hospitals and the fear and pain he must have felt.
The Every Story Matters record demonstrates how lives have been disrupted and damaged by catching Covid-19 and living with Long Covid.
We’re left alone now; we don’t know what we can do. They need to recognise Covid is a long term or lifelong condition for some people.
We had GPs refusing to believe in Long Covid here, with many others not getting testing for symptoms.
Clinically vulnerable and clinically extremely vulnerable people talk about the physical and emotional toll of shielding and the ongoing impact of Covid-19 on their lives.
I coped by doing other things but if I’d have gone a little bit longer, a few more weeks, I think I would have gone over the edge to be honest with you. I was getting to the stage where I couldn’t cope...and only having [my mother] really to speak to, that was a big thing because my whole life was quite social. I was lonely, and I tried not to let that affect me too much. It was driving me absolutely crazy.
The record also recounts some of the positive things to come from the pandemic. Healthcare services continued to support many patients and there were examples of good patient care.
We did adapt, and I think we did change. I think we did what we had to do. It was dynamic the whole time really, wasn’t it? It was changing all the time, and we did our best, I think, to go and do what we had to do.
[In] regards to PPE equipment, I think it was at the beginning [that there] was the shortage, but it was the schools and communities that were making visors and stuff. It was really amazing how quickly and how much they wanted to help. I think there's still, within the hospital, some of the stuff that people made. It was an influx of people willing to do anything, just to make sure that we were able to protect ourselves and help protect patients. It was really, it was inspiring to see what the community was doing for us, and it made us know that they were trying to help in any way they could.
UK Covid-19 Inquiry Secretary, Ben Connah, said:
Every Story Matters is integral to the Inquiry and ensures that all our work, and the Chair’s eventual conclusions, will be informed by people’s experiences. In this, our first published record, we draw together thousands of experiences that demonstrate the impact of the pandemic on patients, their loved ones, healthcare systems and settings, and the people working within them.
It is a tough read in places - but it really brings to life how people experienced our healthcare systems during those pandemic years.
Every story shared will form the basis of themed records. Future Every Story Matters records will focus on the care system, work, family life and many other aspects of life during the pandemic. I would encourage everyone with a story to share it with us. To find our more visit everystorymatters.co.uk.
Last but not least, the Inquiry would like to convey its deepest gratitude to all the bereaved families, friends and loved ones who shared their experiences with us.
Every Story Matters has been enormously supported by individuals, groups and organisations. The Every Story Matters team at the Inquiry is extremely grateful to them and would like to acknowledge their invaluable contribution. They include:
- Association of Anaesthetists
- British Geriatrics Society
- Carers UK
- Clinically Vulnerable Families
- Covid-19 Bereaved Families for Justice Cymru
- Covid19 Families UK and Marie Curie
- Disability Action Northern Ireland, and the ONSIDE Project (supported by Disability Action Northern Ireland)
- Eden Carers Carlisle
- Enniskillen Long Covid Support Group
- Foyle Deaf Association
- Healthwatch Cumbria
- Long Covid Kids
- Long Covid Scotland
- Long Covid Support
- Long Covid SOS
- Mencap
- Muslim Women’s Council
- People First Independent Advocacy
- PIMS-Hub
- Race Alliance Wales
- Royal College of Midwives
- Royal College of Nursing
- Royal National Institute of Blind People (RNIB)
- Scottish Covid Bereaved
- Sewing2gether All Nations (Refugee community organisation)
- Self-Directed Support Scotland
- Trades Union Congress
- UNISON
- Bereaved, Children and Young Peoples’, Equalities, Wales, Scotland and Northern Ireland forums and Long Covid Advisory groups