Progress of the EAPC Task Force on Palliative Care for People with Intellectual Disabilities

Posted on August 20, 2013 by pallcare

MORE HIGHLIGHTS FROM THE 13^TH EAPC WORLD CONGRESS IN PRAGUE…
Dr Irene Tuffrey-Wijne, Chair of the EAPC Task Force; Senior Research Fellow, St George’s University of London and Kingston University (UK) and Maastricht University (Netherlands); Chair, Palliative Care for People with Learning Difficulties Network.

Irene Tuffrey-Wijne (right) and Dorry McLaughlin at the EAPC Congress in Prague, presenting a poster on the EAPC Task Force for People with Intellectual Disabilities

The provision of both palliative care services and intellectual disability services varies widely across Europe. This affects the way people with intellectual disabilities are supported at the end of life. Our task force is collecting examples of good practice. Here are just a few…
A family doctor from Croatia reports on an elderly care home with no experience of people with intellectual disabilities. The home supported a woman with Down syndrome after her mother died, and cared for her until she herself died five years later.
“With only basic knowledge of palliative care, we are aware that some procedures could have been different and more complete… Still, we are very proud that we took her on and remained with her until the end.” 
The manager of a centre in Bosnia-Herzegovina wrote:
“Of particular concern is the fact that the number of people with intellectual disabilities coming under the care of social welfare centres has been steadily increasing over the past ten years, thereby placing greater demands for institutional care.” Our collaborator in this country reported on various training programmes in Bosnia-Herzegovina, including a partnership with experts from Belgium.
There are inspiring examples of staff training initiatives from Ireland; national guidelines and reports in England and special expert roles and posts for intellectual disability and palliative care have been created in Switzerland and the Netherlands. There are also examples of good end of life care for an individual from Germany and Sweden and resources have been developed in Belgium.
Survey now online – your feedback is welcomed

The EAPC Congress in Prague was a wonderful opportunity to present the progress made by our task force and to meet new people who are willing to help us with our work. This Task Force on Intellectual Disabilities is now halfway through its two-year mandate. We are in the process of developing consensus norms for palliative care of people with intellectual disabilities. As well as gathering best practice examples from across Europe, we are inviting feedback on the draft norms. If you want to take part, click here to go to our survey. If you have any examples related to palliative care provision for people with intellectual disabilities, do let us have them! (You can email Irene Tuffrey-Wijne).
 The deadline for comments and completing the survey is 31 August 2013.
Find out more…

• Click here to find out more about the EAPC Task Force on Palliative Care for People with Intellectual Disabilities.
• Click here to find out more about the PCPLD Network (Palliative Care for People with Learning Difficulties).

Prague Congress reports and presentations now online!…
Even if you weren’t able to attend the 13th EAPC World Congress in Prague you can now find a selection of reports and presentations on the EAPC website. Click here to access the conference web page and then follow the instructions to login in the usual way.