Too Ill to Talk?: User Involvement in Palliative Care

Opening with a useful overview of the literature on user involvement, the book goes on to look at the policy and professional context within which user involvement is undertaken, in particular user involvement in palliative care. In this section, the authors discuss two key concepts - palliative care and empowerment - and analyse 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 neuron disease - and in this way the views and experiences of the 'user' are brought into play to critique current policy and practice.

Neil Small is a Professor of Community and Primary Care, University of Bradford Penny Rhodes is a Research Fellow, Bradford Health Authority