April 2017

The EAPC Taskforce on Intellectual Disabilities has now completed its work, which culminated in a White Paper published on the EAPC Website and in Palliative Medicine (2015). It is clear from our experience of the Taskforce and the meeting of the researcher group that there are huge benefits to having an established European group of practitioners and researchers to share information and ideas and to collaborate on projects. Knowledge in the field of palliative care and intellectual disabilities is limited, and so are resources. It is important to pool and share available expertise, develop policy and practice, and facilitate research projects across borders. To this end, we propose the establishment of an EAPC Reference Group for Intellectual Disabilities. We have made contact with key members of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) and the Palliative Care for People with Learning Disabilities (PCPLD) Network; both are keen to collaborate with an EAPC Reference Group. They will contribute expertise and contacts in the area of intellectual disability and networking.

The aims of the 2012 project were to improve palliative and end of life care for people with ID by: (1) Identifying examples of good and promising practice across Europe; (2) Developing consensus guidelines and recommendations for core standards of care, research and education; and (3) Publishing the good practice examples and consensus guidelines/standards that will be applicable and influential in Europe and beyond. We have achieved those aims and produced a White Paper this summer 2015. The work involved gathering the experiences and opinions of 92 experts in 15 European countries.

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 ID thus presents a major challenge across Europe.

The Taskforce on Intellectual Disabilities 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.

Another aim is to promote European research collaborations. In February 2015, a group of 16 researchers from across Europe met in Zürich to discuss the current state of knowledge in the field as well as the areas in need of further investigation, especially those that would benefit from international collaboration. The Reference Group hopes to take the European research priorities established by the researcher group at the Zürich meeting, and use them as a basis for a European survey of clinicians, carers, families and (if possible) people with intellectual disabilities, in order to assess the European-wide research priorities of all stakeholder groups. 

International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) and the Palliative Care for People with Learning Disabilities (PCPLD) Network

There is no budget for this group, and at present none is required. Meetings will take place by phone/internet, or in person when there is no extra cost (eg at EAPC Congress)