A University of Liverpool report into the impact of COVID-19 related bereavement – backed by the Covid-19 Bereaved Families for Justice group – was handed to Gillian Keegan, the Minister for Care and Mental Health.
The Lived Experiences of People Bereaved by COVID-19 report lays bare the stark reality for those who lost loved ones to the pandemic, and fills the large gap left by the Health and Social Care and Science and Technology Committee report, which laid out Government failings but did not consult with any of the families and individuals affected by the disease and its handling.
Co-author, Professor Lynn Sudbury-Riley – an expert in services for vulnerable people, including end of life care, in the University’s Management School – said: “This research spotlights the lived experiences of the implications of these failings, the consequences of a wide range of further weaknesses in systems and processes, and the ongoing repercussions of being bereaved by COVID-19.”
Crucially, the report provides recommendations which the authors and the Covid-19 Bereaved Families for Justice group (CBFJ) are urging the Government to take on board.
- Provision of a permanent memorial(s) to COVID-19 victims, in consultation with CBFJ, which founded and manages the National Covid Memorial Wall in London
- Improved pandemic planning across Government, NHS and social care
- An overhaul of communication practices between hospitals and families, particularly as it relates to vulnerable individuals or those with underlying health conditions
- Development of specialist bereavement services and the expansion of current counselling services
- A focus on the implications of denying cultural death rituals
- System changes to reduce the number of infections that begin in a healthcare setting (nosocomial contractions)
- More training in end-of-life care for frontline staff
- Overhaul of processes for reaching, recording and communicating Do Not Resuscitate (DNR) and critical care decisions
- The Public Enquiry is brought forward, and processes are put in place to ensure it is conducted with diligence and integrity
Professor Lynn Sudbury-Riley, who lost her father when he contracted COVID-19 while in hospital for a foot operation in March 2020, said: “The anger and blame felt by our research participants is overwhelmingly directed at Government decisions that led directly to a failure to protect care home residents, a reluctance to close borders, failures pertaining to PPE, not using Nightingale Hospitals sufficiently, and poor decisions regarding the first and subsequent lockdowns.
“A great deal of cynicism and contempt for some authority figures emerged from this research, together with a belief that many in positions of power really did not care about lives being lost.”
Fran Hall, spokesperson for Covid-19 Bereaved Families for Justice, said: “This report demonstrates exactly why it’s so important the voice of lived experience is at the very heart of the forthcoming statutory inquiry.
“For many families across the country the stories within the report will be devastatingly familiar and it sheds real insight into tragedies that have touched every corner of the UK.
We hope the Government will read this report and start to immediately engage with those of us who have lost loved ones to the virus on the appointment of the chair and terms of reference for the inquiry.”
CBFJ’s Fran Hall with the report outside the Department of Health and Social Care
Professor Lynn Sudbury-Riley and co-author, Dr Benito Giordano used pathography (stories of illness experience) to collect the narratives of 28 people who lost 30 relatives to COVID-19, with data collection taking place between 7 – 25 June 2021.
The authors then conducted manual reflexive thematic analysis to identify core and sub-themes embedded in the data, and these themes form the basis of the research findings.
Dr Benito Giordano, who lost both his parents to COVID-19, added: “Transparency, the truth, and public awareness emerge as incredibly important to bereaved families.
“Many want senior people held to account but, most of all, these people want change so that in the future no-one else has to endure the lived experiences of these families.”
The Lived Experiences of People Bereaved by COVID-19 report is authored by Professor Lynn Sudbury-Riley and Dr Benito Giordano, in the University of Liverpool’s Management School, and backed by the Covid-19 Bereaved Families for Justice Group. To read the full report, please visit www.liverpool.ac.uk/humanities-and-social-sciences/research/coronavirus-research/covid-bereaved/