Irene Tuffrey-Wijne has spent the past two decades researching the needs of people with learning disabilities who reach the end of life, and those who are bereaved. What are the challenges and difficulties for families, support staff, professionals and service providers? Crucially, what do people with learning disabilities themselves think about all this?
In this session, Prof Tuffrey-Wijne will give an overview of palliative care issues for people with learning disabilities, including facts, figures, experiences and approaches. Communication and shared decision-making are important parts of this. How can you assess someone’s needs if they can’t tell you what these are?
There will also be a focus on how Covid-19 deaths have affected people with learning disabilities.
The handout for this session is available by clicking the handout icon on the bottom right-hand corner of the video play
Professor Irene Tuffrey-Wijne
Professor of Intellectual Disability & Palliative Care, Kingston University & St George’s University, London
Irene Tuffrey-Wijne (RN, PhD) is Professor of Intellectual Disability & Palliative Care at Kingston University & St George’s University of London. She has close collaborative links with Maastricht University (Netherlands). She has extensive clinical experience in both intellectual disability and palliative care services.
Since 2001, Irene has led a programme of research focusing on intellectual disability, cancer and palliative care. She has published widely and presented her work in the UK and across the world, and is recognised as the leading international expert in the area of palliative care for people with intellectual disabilities. Inclusion of people with intellectual disabilities as study participants and as salaried co-researchers is a key part of her work.
Irene is a founding trustee of the UK based (but international) Palliative Care of People with Learning Disabilities Network, and chair of the Reference Group for Intellectual Disabilities of the European Association of Palliative Care.