Let’s talk about death, dying and intellectual disability

Professor Irene Tuffrey-Wijne

Kingston University & St George’s University of London

Professor Irene Tuffrey-Wijne (a nurse by background) has spent the past two decades researching the needs of people with intellectual 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? How can you assess someone’s needs if they can’t tell you what these are? Communication and shared decision-making is an important part of this. Crucially, what do people with intellectual disabilities themselves think about all this? In this session, Prof Tuffrey-Wijne will give an overview of palliative care issues for people with intellectual disabilities, including facts, figures, experiences and approaches.


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.