Dr Irene Tuffrey-Wijne, Chair of the EAPC Taskforce on Palliative Care for People with Intellectual Disabilities; Senior Research Fellow, St George’s University of London (UK) and Maastricht University (Netherlands), and Chair of the PCPLD Network
In July 2012, ten people from six different countries met in Canada, at the World Congress of the International Association of the Scientific Study of Intellectual Disability. It was one of the first meetings of our newly appointed Taskforce. Its aim is to develop consensus guidelines and core standards for palliative care of people with intellectual disabilities and draw together best practice examples from across Europe. It is a daunting task, but the enthusiasm of the members of our Taskforce is inspiring. We now have 36 people on board from 18 European countries, plus observers from three other continents. They are a mixture of professionals working in palliative care services and intellectual disability services. I think we are all excited by this opportunity to shine a light on the needs of a particularly vulnerable group of patients, and the opportunity to address these needs on a European level.
About 2.5% of the population has intellectual disabilities. This is an ageing population. Their needs, when they reach the end of life, have only really begun to be recognised, discussed, researched and addressed in the last decade. This has been a hidden population, quite literally: hidden away in institutions or in the homes of their families. Bringing together professionals and carers from across disciplines in order to share best practice and learn from each other is very important. Even the most experienced professionals can be quite frightened:
“I know nothing about people with intellectual disabilities!”, or,
“I know nothing about looking after someone who is dying!”
We may hope and think there’s an expert somewhere out there who has all the answers. The truth is that everyone holds part of the answers, and everyone needs to be involved and share their expertise.
There are a lot of good things happening, not just in the UK but also across Europe. Our task will be to highlight this and publish good practice examples that others can learn from and replicate. There are huge variations in the provision of both palliative care services and intellectual disability services across Europe. Hopefully, the new guidelines and core standards will be applicable everywhere.
Find out more…
If you want to know more, of if you would like to contribute experiences from your own practice, do get in touch with me, Irene Tuffrey-Wijne. Our next meeting will be in London (December 2012) – not quite as far away as Canada!
- Click here to find out more about the EAPC Taskforce 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).