By Neil Small and Penny Rhodes.
This book assesses the concept of user involvement in services
for people who suffer from multiple sclerosis, motor neurone
disease and cystic fibrosis. Drawing on interviews and narratives
the authors cover a wide range of issues, including diagnosis,
informed choices, obtaining information, treatment, social work
support, respite care, stress, denial, counselling and end-of-life
Some of the stories of how people with these three disabling
illnesses are treated by professionals will make readers query
whether user involvement is yet a reality. There are shocking
examples of poor diagnosis. A woman with multiple sclerosis endured
17 years of uncertainty and self-doubt before getting a correct
diagnosis and beginning appropriate treatment.
Quality of contact with GPs varied widely, some were praised for
their support and knowledge, but others were condemned for being
ignorant of chronic illnesses. One woman who queried what might
happen to her in the future was told: “If you are asking me when
you are going to be a cripple I cannot tell you.” She never went
back to the GP again.
This important book illustrates the courage of people striving
to live ordinary lives in the face of devastating illnesses. A
section on the deaths of friends among sufferers of cystic
fibrosis, gives a moving account of young people living with
By writing this book, the authors have given an excellent
compassionate up-to-date account of attempts to develop democracy
in health and social services. It shows that user involvement has
to be more than politics trying to fit in with some fashionable
idea of participant democracy, and patients have a right to be
fully involved in the services which affect their lives.
This book deserves to be very widely read. The authors’ final
paragraph sets forth the ethics of user involvement, with the
words: “It is about privileging the voice of those most affected by
ill health and saying that it is just so to do”. This striking
description of user involvement should be copied and set on the
walls of all medical, nursing and social work schools.
Maureen Oswin is a researcher and author of Am I
Allowed to Cry? (Souvenir, 2000)