People with intellectual disabilities make up an estimated 1-3% of the population. They are increasingly living into old age, with an associated increase in the need for palliative care provision; however, many do not currently have equitable access to palliative care services. Whilst their palliative care needs may be no different from those of the general population, they often present with unique issues, challenges and circumstances that make it more difficult to meet those needs. Therefore, they need focused consideration. Meeting the growing palliative care needs of people with intellectual disabilities thus presents a major challenge across Europe.
This reference group follows on from the EAPC Taskforce on Intellectual Disabilities (2012-2015), which aimed to improve palliative and end of life care for people with intellectual disabilities by identifying examples of good and promising practice across Europe, and developing consensus guidelines and recommendations for core standards of care, research and education. We have achieved those aims and produced a White Paper (2015), which made several recommendations. These included the importance of ongoing international exchange of expertise, as well as further research. One of the aims of the Reference Group is to monitor and promote implementation of the White Paper across Europe, and to promote international research collaborations.
The Reference Group is chaired by Michael Echteld, Professor of End of Life Care,
Avans University of Applied Sciences,
The Netherlands and Rachel Forrester-Jones, Professor of Social Inclusion
Department of Social & Policy Sciences, University of Bath, UK