Too Ill to Talk?

User involvement has become an important part of health policy initiatives during the last decade, but how realistic is the concept and do all users want to be involved? This book brings the voices of people with serious illness, and those caring for them, into the debate about how far health and social care services can reflect the views of users. Opening with an overview of the literature on user involvement, it goes on to look at the policy and professional context within which user involvement is undertaken, in particualr user involvement in palliative care. In this section, the authors discuss two key concepts, palliative care and empowerment, and analyze the role of self-help groups and new information and communication technologies in this context. The last section of the book focuses on the detailed narratives of people coping with three life-threatening illnesses, cystic fibrosis, multiple sclerosis and motor neurone disease, and in this way the views and experiences of the “user” are brought into play to critique current policy and practice.
The book challenges the assumption that user involvement is either easy to achieve or that it is necessarily welcomed by all parties. It should be valuable reading for students on health studies courses, health professionals and policy makers in health and social care.