New research reveals gaps in care and support for dying people in Wales
Press release published
- One in nine (11%) people who died in hospital had been there less than 24 hours showing that too many people who are close to death end up in a busy A&E, because there isn't access to proper care at home or in a care home
- Almost half of people (46%) who died in hospital had no friends or family members present
- A quarter (25%) of people who died either probably or definitely did not know they might die because of their illness
- Marie Curie is calling on the Welsh Government to develop a plan for their Quality Statement on palliative and end of life care
Concerning research funded by Marie Curie reveals that too many people in Wales are unaware that they are dying, are experiencing avoidable pain and dying alone.
The charity has released research1 showing that many are dying without the care and support they and their families need. Family carers for those at the end of life, -reported having to undertake essential care without the correct knowledge, skills, or access to professional support.
The research is based on the largest ever post-bereavement survey in Wales. It found that many people are dying frightened, sometimes alone and with avoidable pain and symptoms. Stressed and exhausted families often feel neglected and don't know where to turn to for help and are left with 'disturbed grief'.
By documenting the lived experiences of those at the end of life and their loved ones, the report reveals that the Welsh Government's vision for palliative and end of life care – the Quality Statement – is a frustratingly long way from being realised.
This research, funded by Marie Curie as part of the Better End of Life programme is a collaboration between Marie Curie, King's College London Cicely Saunders Institute, Hull York Medical School at the University of Hull, and the University of Cambridge.
Key findings of the research include:
Too many people die in pain and without the support they need for their symptoms
More than one in three people were severely or overwhelmingly affected by pain (36%) or breathlessness (40%) in their final week of life, and many felt anxious and depressed.
Difficulties accessing medicines were common, particularly 'out of hours'.
Patients and families suffer when services are poorly coordinated, and professionals lack time
Almost half (47%) were unhappy with at least one aspect of the care their family member received. One in 15 made a formal complaint.
Staff across health and social care settings often did not have enough time to provide adequate care for dying people.
Unpaid carers take on significant caregiving roles with little support
Most respondents undertook essential caregiving roles, but many felt they lacked the knowledge, skills, and access to professional support needed.
Of respondents still in work, 14% took between 31 and 90 days paid or unpaid leave, while 6% quit or changed their jobs (including retiring early), to care for their loved one.
Ann Hutchings, 69, from Penarth, whose mum had dementia and died without family in hospital in May 2020 after contracting Covid, said:
"It got to the stage where I could neither physically or mentally cope with it. I didn't want her to go into hospital, because I knew if she went in, it was highly likely she wouldn't come out.
"But I let her go – for the first time ever, she went into the ambulance alone as well, because I always went with her and visited her every day."
Moved from Llandough Hospital to Barry Hospital for rehabilitation, her mum – Sylvia – deteriorated further, and doctors reluctantly allowed Ann to visit her two days before she died.
"They moved her into a side ward and it was Linda from Live at Home who took me down – I sat in the back masked up and she sat in the front masked up as we were in total lockdown then," Ann added.
"I went to the ward, I had to gown up. I spent nearly an hour with her, she was still semi-conscious and I like to think she knew I was there.
"On May 1 2020, about 4pm the doctor came on the phone and said it's not going to be long and I thanked them for letting me know.
"Around 10pm all my electricity went off – but nobody else in the street was affected. I said "mum is that you saying goodbye" and then it came back on and the phone rang – it was the nurse from the hospital telling me she had passed. She reassured me that she hadn't been on her own at the time."
Ann has since received support from the Marie Curie Support Line's bereavement and companion over the phone services – something she says is invaluable and helped her through her grief and in moving ahead with her life.
Marie Curie Cymru Associate Director of Policy and Public Affairs, Jon Antoniazzi, said:
"Hearing how people are still struggling in their final weeks is so sad and distressing. The repercussions from poor end of life care has a profound impact on the person whose dying as well as their loved ones.
"Frustratingly, despite its importance, end of life care continues to be overlooked and now the shortfall in support is at a critical level.
"Despite the Welsh Government having welcome ambitions to improve palliative and end of life care, we really need to see these ambitions turned into a sound plan and solid actions.
"That's why we're calling on the Welsh Government to develop, at pace, a plan to support and deliver its already published end of life care aspirations across Wales."
"We desperately need the Welsh Government and Health Boards to play their role in fixing the end of life care crisis and improve support for families and carers of people with a terminal illness, otherwise even more people will have a bad death, carers will suffer, and vital NHS resource will be put under more strain."
Professor Katherine Sleeman, from King's College London and lead researcher on the Better End of Life programme said:
"The research has shown that while some people, especially those accessing specialist palliative care, reported positive experiences of high-quality care, many described the difficulties of accessing overstretched, poorly coordinated services that lacked the time to provide the care and support that was needed.
"Many people are dying at home with breathlessness, pain and mental health needs and their unpaid carers felt unprepared and unsupported. Providing and coordinating care took considerable time with significant financial and emotional consequences.
"If more end of life care is to be provided in the community, funding and commissioning must respond to this pattern of demand. As dying, death and bereavement affect us all, it is in everyone's interest to get this right."
To review the full report: 'Time to care; a nationally representative survey of experiences at the end of life in England and Wales' and Marie Curie's recommendations as a result of the findings please go to: Better End of Life Report 2024 (mariecurie.org.uk)
Notes to editor
For further information please contactrachel.moses-lloyd@mariecurie.org.uk / 07730617843 or the Marie Curie Press Office: media@mariecurie.org.uk / 0845 073 8699.
Please note, Marie Curie is not a cancer charity but the UK's leading 'end of life charity'. We care for people with - any illness they are likely to die from including Alzheimer's (and other forms of dementia), heart, liver, kidney and lung disease, motor neurone disease, Parkinson's, and advanced cancer.
References:
Better End of Life Programme
Reference:
1 Time to Care in Wales Implications for Wales of 'Time to Care: Findings from a nationally representative survey of experiences at end of life in England and Wales. Policy briefing Marie Curie (2024), Available at beol-2024-report-wales-briefing-combined.pdf (mariecurie.org.uk)
Based on findings from Johansson T, Pask S, Goodrich J, Budd L, Okamoto I, Kumar R, Laidlaw L, Ghiglieri C, Woodhead A, Chambers RL, Davies JM, Bone AE, Higginson IJ, Barclay S, Murtagh FEM, Sleeman KE (King's College London, Cicely Saunders Institute; Hull York Medical School at the University of Hull; and University of Cambridge, UK). Time to care: Findings from a nationally representative survey of experiences at the end of life in England and Wales. Research report. London (UK): Marie Curie. (June 2024). Available at: beol-2024-time-to-care-report.pdf (mariecurie.org.uk)
More than one in three dying people were severely or overwhelmingly affected by pain in the last week of life in Wales: [Johansson et al., 2024, p. 5 policy briefing]
One in nine people who died in hospital had been there less than 24 hours: [Johansson et al., 2024, p.5 policy briefing]
A quarter of people who died either probably or definitely did not know they might die because of their illness: [Johansson et al., 2024, p.10 policy briefing]
Almost half of people (46%) who died in hospital had no friends or family members present [Johansson et al., 2024, p.8 policy briefing]
Nearly of respondents (47%) in the study were unhappy with at least one aspect of the care the person who died received and of those one in eight made a formal complaint: [Johansson et al., 2024, p.9 policy briefing]
Better End of Life Programme
This is the final report from the Marie Curie Better End of Life programme, which is a collaboration, funded by Marie Curie, between King's College London's Cicely Saunders Institute, Hull York Medical School at the University of Hull, and the University of Cambridge.
This report shows findings from a national post-bereavement survey, the QUALYCARE survey, conducted in 2023 across England and Wales. The aim is to describe the outcomes, experiences, and use of care services by people affected by dying, death and bereavement in England and Wales.
The survey was disseminated through the Office for National Statistics (ONS) to a nationally representative sample of people who had registered the death of a family member in the prior 6 to 10 months. Only non-sudden causes of death were included. The researchers received responses from 1179 people, making this the largest nationally representative post-bereavement survey in the UK since the 2015 VOICES survey.
About Marie Curie
Marie Curie is the UK's leading end of life charity.
The charity provides expert end of life care for people with any illness they are likely to die from, and support for their family and friends, in our hospices and where they live. It is the largest charity funder of palliative and end of life care research in the UK, and campaigns to ensure everyone has a good end of life experience. Whatever the illness, we're with you to the end.
If you're living with a terminal illness or have been affected by dying, death and bereavement, Marie Curie can help. Visit mariecurie.org.uk or call the free Marie Curie Support Line on 0800 090 2309.
Whatever the illness, wherever you are, Marie Curie is with you to the end.
About King's College London
King's College London is amongst the top 40 universities in the world and top 10 in Europe (THE World University Rankings 2024), and one of England's oldest and most prestigious universities. With an outstanding reputation for world-class teaching and cutting-edge research, King's maintained its sixth position for 'research power' in the UK (2021 Research Excellence Framework).
King's has more than 33,000 students (including more than 12,800 postgraduates) from some 150 countries worldwide, and 8,500 staff.
For nearly 200 years, King's students and staff have used their knowledge and insight to make a positive impact on people, society and the planet. Focused on delivering positive change at home in London, across the UK and around the world, King's is building on its history of addressing the world's most urgent challenges head on to accelerate progress, make discoveries and pioneer innovation. Visit the website to find out more about Vision 2029, which sets out bold ambitions for the future of King's as we look towards our 200th anniversary.
World-changing ideas. Life-changing impact: kcl.ac.uk/news
About Hull York Medical School
Hull York Medical School is a partnership between the University of Hull and the University of York. Since opening in 2003, the School has become known as one of the UK's most welcoming and inclusive medical schools with a reputation for innovative, inspiring, and rigorous medical education.
Students graduate from Hull York Medical School as excellent thinkers, evidence-based practitioners, and patient-centred communicators, who are thoroughly prepared for clinical practice.
Hull York Medical School has an excellent reputation for its research. In the 2021 Research Excellence Framework (REF), over 85% of research at Hull York Medical School was deemed 'world-leading' or 'internationally excellent'.
The School's community of clinical and academic researchers across Hull and York conduct world-class, interdisciplinary research, addressing issues that are of critical national and international importance, including primary care, mental health, palliative care, public health, and immunology and infection.
Research undertaken to date has attracted significant grants and funding, including from the National Institute for Health and Care Research, Marie Curie, Yorkshire Cancer Research, the Wolfson Foundation, Cancer Research UK, and the British Heart Foundation
About the University of Cambridge
The University of Cambridge is one of the world's leading universities, with a rich history of radical thinking dating back to 1209. Its mission is to contribute to society through the pursuit of education, learning and research at the highest international levels of excellence.
The University comprises 31 autonomous Colleges and over 100 departments, faculties and institutions. Its 24,000 students include around 9,000 international students from 147 countries. In 2023, 73% of its new undergraduate students were from state schools and more than 25% from economically disadvantaged backgrounds.
Cambridge research spans almost every discipline, from science, technology, engineering and medicine through to the arts, humanities and social sciences, with multi-disciplinary teams working to address major global challenges. In the Times Higher Education's rankings based on the UK Research Excellence Framework, the University was rated as the highest scoring institution covering all the major disciplines.
A 2023 report found that the University contributes nearly £30 billion to the UK economy annually and supports more than 86,000 jobs across the UK, including 52,000 in the East of England. For every £1 the University spends, it creates £11.70 of economic impact, and for every £1 million of publicly-funded research income it receives, it generates £12.65 million in economic impact across the UK.
The University sits at the heart of the 'Cambridge cluster', in which more than 5,000 knowledge-intensive firms employ more than 71,000 people and generate £21 billion in turnover. Cambridge has the highest number of patent applications per 100,000 residents in the UK.
www.cam.ac.uk