Identifying the best ways of providing care and support to terminally ill people, their families and carers outside of ‘working hours’ has been rated the top priority for the future of palliative and end of life care research, according to a new report launched on 15 January 2015.
The results from this extensive 18-month public consultation were revealed at the Palliative and End of Life Care Research Summit, hosted by Public Health England’s National End of Life Care Intelligence Network, and, NHS England. Read tweets from the event.
Over 1400 people in the last years of life, current and former carers, and health and social care professionals participated in the Palliative and end of life care Priority Setting Partnership, initiated by Marie Curie and independently overseen by the James Lind Alliance, a non-profit making initiative, hosted by the National Institute for Health Research, to determine the most important unanswered questions (i.e. gaps in existing evidence) that could improve overall care and experiences.
Top of the list, narrowed down from a ‘long list’ of 83 questions, was identifying the best ways of providing care outside of working hours to avoid crises and help patients to stay in their place of choice. This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families.
About the partnership
What are the aims of the partnership?
The partnership is bringing together organisations interested in palliative and end of life care. The aim is to consult people likely to be in the last years of life, current and bereaved carers and families, and healthcare professionals about what questions they believe need answering through research.
Together we will prioritise these research needs to ensure that future research improves the care and support that can be provided for those adults who are in the last years of life, their carers and families.
Why priority setting is important
Palliative and end of life care is an under-researched area. There are many unanswered questions to be addressed. Once we identify and prioritise what needs people have, researchers can look to answer the questions and research funders can better direct their resources.
This will bring tangible benefits and evidence-based treatments to people who may be in the last few years of life.
We hope that this project will also raise awareness of the importance of research in palliative and end of life care and encourage research funders to invest in this area.
What can I do to help?
Our survey has now closed, but if you want to be kept up to date with the project, please email
PeolcPSP@mariecurie.org.uk or telephone 020 7091 4153.