Food banks and loneliness: our new research reveals the reality for many at the end of life
70 years after a report found poverty and isolation among people receiving end of life care in the community, we found these experiences are still far too common.
In 1952, Marie Curie and the Queen’s Nursing Institute (QNI) published a ground-breaking report into the experiences of people with terminal cancer receiving end of life care at home.
The research was unique in focussing on the impact of social, economic and political conditions on people at the end of life. Poverty and isolation, it found, were common. Those findings helped shape the development of the hospice sector in the UK.
Seventy years on, we partnered with the QNI again, to conduct another national survey of end of life care providers including nurses, healthcare assistants, doctors, other health professionals, volunteers and faith community leaders. We wanted to see how far we’ve come and what changes are needed to help realise Marie Curie’s vision of a better end of life for everyone – whoever they are, wherever they are, whatever their illness.
Our report, 70 years of end of life care in the community: how much has changed since 1952 , is published in December 2023. And the findings are stark.
Research can help us close the gap in end of life care
We know that, right now, one in four people don’t get the care and support they need at the end of life. Research, such as this report, helps us understand how we can work to close that gap in end of life care, improve the services we provide as the UK’s largest charitable employer of palliative care professionals, and shape the wider system.
Why compare end of life care today with that of 1952?
There are several reasons Marie Curie, the QNI – and I as a researcher – wanted to undertake this comparative research.
The 75th anniversary of Marie Curie and the NHS (both established in 1948), seemed a good point to take stock. There was also a need to review end of life care in the community in the aftermath of the Covid-19 pandemic. The UK was experiencing the consequences of widespread infectious disease in 1952, after a flu epidemic, creating an interesting parallel. And, with our ongoing campaign to stop people dying in poverty we wanted to find out more about the financial challenges for people living with a terminal illness during the cost of living crisis.
Research, such as this report, helps us understand how we can work to close that gap in end of life care, improve the services we provide as the UK's largest charitable employer of palliative care professionals, and shape the wider system.
Financial hardship is a serious challenge for many dying people
It’s deeply shocking that so many people in the UK are dying in poverty in the 21st century. Over half (58%) of the end of life care providers we surveyed, reported caring for people for whom a food bank would be helpful at least some of the time. And, shockingly, 7% said that at least half the people they care for need a food bank.
Loneliness is far too common at the end of life
Social isolation – also identified as a problem for people at the end of life in 1952 – remains an unacceptably common experience. Almost every respondent (97%) reported caring for people at home who are lonely. And almost 90% provide care for people who live alone. Isolation, both geographic and social, makes it harder for people at end of life to get the care and support they need.
Palliative and end of life care providers can’t fully meet needs
People at the end of life facing poverty and isolation, and those close to them, need high-quality holistic care and support. But worryingly, nine out of 10 respondents reported being unable to meet the needs of the people they care for, or those close to them, at least in part. For those surveyed, providing care that meets all the complex health, wellbeing and practical needs of the people they’re caring for isn’t always achievable.
We must make the end of life experience equitable
Given the significant developments in welfare and healthcare provision since 1952, I had hoped to see more improvement in the end of life experience since the original report. It’s encouraging that there are many more end of life care providers in the system now. But there are still significant gaps in care, particularly in the out of hours period and for those isolated by geography, or living alone. We must ensure an equitable end of life experience for everyone, and I’m very concerned that we have such a long way to go.
Our recommendations for improving palliative and end of life care
We're calling for four key changes.
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To end the postcode lottery in access, reduce reliance on charitable donations, and ensure services are fit for the future.
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To include 24/7 access to care, through a single point of access, offering advice, guidance and support in every local area; as well as improved access to medicines.
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To include ensuring that those of working age can claim their State Pension and other pension age benefits; and protecting everyone living with a terminal illness from high energy costs through targeted support.
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To include better identification and needs assessments for carers of people living with a terminal illness and improvements in financial and bereavement support.
With a general election on the horizon, this report is timely. It will provide the vital evidence needed to inform and influence the country’s decision-makers.
Our research has shown that challenges in end of life care can be persistent and complex. We must get palliative and end of life care and support right for people living with a terminal illness, their families and friends, now. We cannot wait another 70 years.
Learn more about our policy work and research on issues around end of life care, or read the full report 70 years of end of life care in the community: how much has changed since 1952 .
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