One of the reasons we are doing the DAPPLE project is because it helps us answer questions about how to improve palliative and end of life care research. The James Lind Alliance, along with various partner organisations, identified a series of research priorities in 2015. When we wrote our grant, this including questions like ‘How can access to palliative care services be improved for everyone regardless of where they are in the UK?’. By focusing on finding the best ways to make sure that people with a learning disability get the right care and support at the end of their lives, we can help answer that bigger research question.
In February 2025, after working with the James Lind Alliance, Marie Curie launched the ‘refresh’ of these research priorities. The ‘refresh’ was done because Marie Curie felt it was time to see how research has filled existing gaps in knowledge, and because they wanted to know what is now most important to patients, carers, and professionals. There is now a list of ‘top ten priorities’ with an overall list of 24 questions for research to answer.
Excitingly, we see many opportunities for how the DAPPLE project will help answer some of these new priority questions. Here is just an example of a few:
Priority 2: How can NHS, social services and charities work more collaboratively to provide joined-up care that better meets the needs of people with a serious life-limiting illness and their carers, friends and families?
Priority 5: How can palliative and end of life care better meet the complex needs of people with multiple health conditions?
Question 14: What are the best ways to identify that a person is dying or is near to death (in their last year, months, weeks, days of life)? How can health professionals better recognise these stages in people with any serious life-limiting illness?
In the DAPPLE project, by attending to people’s stories and finding out how services work together (or sometimes not!), we hope to identify the ways in which collaboration works and how to meet the needs of people with a learning disability who are dying.
Some of work will also help us understand when end of life care needs and dying are identified in people with learning disabilities. As the project develops, we’ll get a better sense of how we are helping to answer these important questions and what tools or guidance are needed to support better care.
More information about the Palliative and End of Life Care Refresh can be found at the James Lind Alliance and Marie Curie project website. Written by Professor Erica Borgstrom (Professor of Medical Anthropology, The Open University)
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