Palliative and end of life care is an under-researched area. Currently, too many people are dying without getting the care they need at the end of life. We want to help change that.
Marie Curie is calling on health and social care professionals to take part in a critical survey to help researchers understand what topics of palliative and end of life care research are most important to people living with a serious life-limiting illness.
Following a similar project in 2015 – the charity is working with the James Lind Alliance (JLA) to refresh the top 10 priorities for palliative care and establish key areas for the academic research Marie Curie will fund in the future.
The survey runs until December 31st 2023 and the results will ensure the charity puts the people who are most affected by these issues at the heart of its research.
The partnership needs to hear from people living with a serious life-limiting illness, their family and friends, people who have been bereaved and the health and social care professionals involved in their care.
Speaking about the project, Dr Sabine Best, Marie Curie Associate Director of Research Management & Impact said:
“At Marie Curie, we know that everyone is affected by death, dying and bereavement but sadly palliative and end of life care research is an extremely underfunded area. As the UK’s largest charitable funder of this research area, we want to focus on the topics which are most important to people who are directly impacted, which is why it’s crucial for us to hear from them.”
“This new survey will help us understand the specific needs of people living with a serious life-limiting illness, their carers and the health and social care professionals who support them.”
Sabine added: “Finding out how best to support people outside of typical office hours was the top priority in our previous priority setting partnership. We are pleased to say that since 2015, ‘out-of-hours’ care has received more than £1.5 million of new funding, of which more than two thirds was from Marie Curie and co-funding partners. However, more research is still needed to fully address the question.”
Palliative and end of life care research receives only 0.21% of the £2.56 billion spent on non-commercial health-related research projects and programmes in the UK1. Marie Curie believes there is an immediate need for more research to ensure the health and social care sector is ready to meet future demand.
By 2048, there will be more than 730,000 people with palliative care needs in the UK, with the nation’s ageing population being one factor driving this increase2.
Caroline Whiting, Senior Research Manager from the JLA explained how the new project – the Palliative and end of life care Priority Setting Partnership Refresh (PeolcPSPR) – can help:
“The James Lind Alliance brings patients, carers and clinicians together in Priority Setting Partnerships. Our partnerships identify and prioritise unanswered questions or uncertainties that these people agree are the most important, so that health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives. As we join Marie Curie for this critical project, we put the people most in need at the forefront of our work.”
To get involved in the survey, or for more information please visit palliativecarepsp.wordpress.com or contact PeolcPSP@mariecurie.org.uk
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References
- UKCRC – UK Health Research Analysis 2018
- How many people need palliative care – updated estimates of palliative care need across the UK, 2017-2021. July 2023. mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2023/how-many-people-need-palliative-care.pdf
About Marie Curie
Marie Curie is the UK’s leading end of life charity. The charity provides essential frontline nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end of life care and bereavement support.
About the James Lind Alliance
The James Lind Alliance is a non-profit making initiative, which is hosted by the National Institute for Health and Care Research. Its aim is to bring patients, carers and health care professionals together to identify and prioritise research questions in order to influence the prioritisation of future research in that area.
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