Abstract

This book is a powerful and moving account of the experiences of 13 people with learning disabilities who were living with cancer. The author followed their lives as part of a 3-year research study, during which 10 people died. She spent extensive periods of time with them at their homes and day centres, in hospitals, hospices and nursing homes. In doing so, she gained a unique understanding of what it is like for individuals with learning disabilities to live with deteriorating health and how this may impact upon their families, friends and carers. How was each person's cancer diagnosed? How was their cancer and its implications explained to them? How much did they understand and how did they cope with treatment? What happened when they were dying? In answering these questions, the book exposes the suffering of people with learning disabilities at the end of their lives, but also their remarkable resilience and strength. In an optimistic final chapter, the author demonstrates how people with learning disabilities can best be supported at the end of life.

This book will be an invaluable resource for anyone involved in the care and support of people with learning disabilities who have cancer and who are dying, including health and social care professionals, families and friends.

Irene Tuffrey-Wijne qualified as a nurse in Amsterdam, and moved to the UK in 1985. She holds a first degree in Palliative Care Nursing and completed a PhD in the palliative care of people with learning disabilities at Maastricht University, The Netherlands. Irene has extensive clinical experience in the fields of both learning disabilities (as a support worker and home manager) and palliative care (as a clinical nurse specialist at a hospice). She now works as a Research Fellow at St George's University of London, leading a programme of research aimed at improving end of life care for people with learning disabilities. She is chair of the Network for Palliative Care of people with Learning Disabilities. Irene lives in London with her husband and three young children.

`This book is an account of vulnerable people with deteriorating health, made more vulnerable by their illness, struggling in an often insensitive system...Loss is an inevitable part of life for all of us but this book outlines the impact of loss on people with learning disabilities, often in devastating and subtle ways...I found it a very accessible book: its key element was that the research is presented in readable, detailed accounts of her observations over time as each person's illness progressed. This personal notebook, which relates her inner thoughts, doubts, confusion and sadness over people's pain, was very moving. The fact that at times she could not help and yet she was able to stay with that discomfort rather then cover it up is commendable, reading like a good psychotherapy session...I was surprised as I did not expect to be so affected by this book, nor to learn so much from it. I think the highest praise I can give Tuffrey Wijne is to say it is to my mind the seminal work on the learning disability and loss. I certainly hope it gets a wider audience outside the learning disability field, hopefully in the National Health Service.`

Community Living, David O'Driscoll

'This book will be an invaluable resource for anyone involved in the care and support of people with learning disabilities who are facing cancer or other life-threatening illnesses. And it also includes a helpful resource section at the end of the book.'

Learning Disability
`This book is written by one of only a handful o people in the United Kingdom who specialise in researching the lives and experiences of people with learning disabilities who have cancer and is a valuable and much needed addition to the literature. It is also a commentary on contemporary care for people with learning disabilities, and the continuing struggle in accessing equitable care.`
British Journal of Learning Disabilities, Liz Forbat, Cancer Research Centre, Department of Nursing and Midwifery, University of Stirling