Wales leads way in plans to improve end of life care
Press release published
New report shows Wales leads way in plans to improve end of life care - but more work needed to understand experiences of terminally ill people
A new report reveals that, despite Wales having developed plans to improve palliative and end of life care, not enough attention has been given to how government policies have actually led to improvements in people’s experience of the care they get1.
The report from Sheffield Hallam University, funded by Marie Curie, reveals that, following the landmark Sugar Report on palliative care in Wales in 20082, there has been a greater focus on prioritising the care that people receive at the end of life.
The research team from the university’s Centre for Health and Social Care Research say that, while Wales has a strong vision for palliative and end of life care provision, there is still a lack of good and useful feedback from people living with a terminal illness, and their families and carers in Wales about the care and support they receive.
The report recommends that the Welsh government should introduce a more sophisticated system of data collection and measuring impact to help inform and improve services now and in the future.
Dr Julie Skilbeck from Sheffield Hallam University’s Centre for Health and Social Care Research is one of the report’s authors. She said:
“Wales' palliative and end of life care policies are key drivers for commissioning, planning and delivering services for people living with terminal illness. In the UK there are a large number of strategy and guidance documents in circulation, although there is only a small number in Wales as could be expected for a nation with less than 5% of the UK population. Wales’ policy documents do provide outcome measures to focus the commissioning and provision of palliative and end of life care services. Nevertheless, it is not always clear whether these outcome measures are sensitive enough to capture how well services meet the overall aims of the strategy, posing a challenge for policy makers.”
Today’s publication also coincides with new data3 that shows more work is needed to ensure that services can meet the current level of need. For the first time ever, there is a clear picture of the estimated need for palliative care in Wales. The data shows that the numbers of, and proportion of deaths from conditions requiring palliative care, including Alzheimer’s disease, dementia and senility, are increasing rapidly.
The analysis of national mortality data from 2012 to 2014 reveals that - at the very minimum - more than seven out of every ten people will die from a condition that needs palliative care. When factors that led to a person’s deaths are considered, as well as the underlying cause, this rises to nine in every ten deaths.
Simon Jones, Director of Policy and Public Affairs, for Marie Curie, said:
“This new data shows us that the need for palliative care is continuing to increase as people die with more complex needs and conditions, however the report highlights that the need for major improvements in the way we collect data and measure patient and family experiences remains a significant problem.
“Today’s report echoes the call made by Marie Curie over two years ago – that we need a much better way of understanding of how people felt about their palliative and end of life care and create a strong evidence base upon which services can be developed and improved.
“Learning from people’s experiences of the care they get is vital to ensuring that services are good and meeting people’s need. Without this, we will never be able to measure what works and what makes a real difference to the care and experiences of people with terminal illness and those important to them.”
Dr Fliss Murtagh, Reader and Consultant in Palliative Medicine, Cicely Saunders Institute, King’s College London, said:
“The new data analysis shows quite clearly that the number of people requiring palliative care is increasing rapidly. Palliative care therefore needs to be seen as a priority – it needs to be properly planned and resourced, otherwise those approaching the end of life will miss out on the care they need. I am pleased to see our work being updated, and also used in Wales for the first time, and hope that these robust estimates of need will be used to underpin palliative care strategies going forward.”
-Ends-
Notes to editor
References:
- State of the Nations Report: Terminal Illness Care in England, Northern Ireland, Scotland and Wales, Centre for Health and Social Care Research, Sheffield Hallam University, July 2016
- Palliative Care Planning Group Wales, Sugar Report, June 2008
- Palliative Care and the UK Nations: An Updated assessment on need, policy and strategy; Implications for Wales, Marie Curie, July 2016
About Marie Curie
Marie Curie is the UK’s leading charity for people with any terminal illness. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance.
Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS.
For more information visit www.mariecurie.org.uk
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About Sheffield Hallam University
Sheffield Hallam University is one of the largest universities in the UK, with more than 31,500 students.
It is one of the country's largest providers of health and social care courses, teacher training, and sport and physical activity courses.
Its courses are designed and delivered in close partnership with employers, professional associations and practice specialists to ensure that the skills our students develop are relevant. As a result, 93 per cent of its students are in employment or further training within six months of graduation.
As one of the UK's most progressive universities, providing opportunity through widening participation is at the heart of the University. 96 per cent of its young full-time undergraduate UK students are from state schools/colleges and 41 per cent are from low income backgrounds.
Sheffield Hallam’s research is characterised by a focus on real world impact - addressing the cultural, economic and social challenges facing society today. 65 per cent of its research was rated world-leading or internationally excellent in the Research Excellence Framework.