By Neil Small and Penny Rhodes. Routledge, London, 2000, 15.99, 254pp. ISBN 0‐415‐23317‐8
Most examinations of user involvement nowadays look at how it should be done. Less frequently, someone revisits the question of whether it should be done at all.
Too Ill to Talk? sets out to do so, specifically refusing to assume `that user involvement is an unqualified good'. Does it in fact serve policy makers' and providers' needs for legitimacy rather than users' service needs? Does it make `unwelcome demands on people whose priorities are not those of policy makers'? In particular, for people with serious illnesses, is it simply too much of a burden?
These are good questions. They immediately highlight the fact that user involvement can become the end in itself rather than the means to something larger, which is probably best encapsulated in the currently fashionable term, `patient‐centred practice'. There is no doubt at all that involving `users' with devastating diseases is difficult.
The Motor Neurone Disease (MND) Association wrestles with these difficulties all the time. We share the aspiration of `patient‐centred practice' both in statutory service provision and in the support we provide directly, our core values are to focus on and empower people affected by MND. We struggle with what involvement really means when a user's entire time and energy can be taken up by the basics of daily life. When it takes 3 hours simply to get up in the morning, getting involved in discussions of policy or provision may not be a priority. Equally, while a few with the disease are able to confront the reality ahead of them directly, many find it all they can do to tackle the problems of each day. The individual who has the wish and the resources to participate in campaigning and service planning is the exception, even if such participation may give them an outlet and meaning.
The MND Association's answer to these obstacles is a combination of general approach and specific actions, at the heart of which is listening to those affected at every encounter, supplemented with formal tools such as questionnaire surveys which enable us to test whether we are interpreting and responding to what we hear correctly. So far, the formal feedback has suggested that our approach does broadly match the wishes of those living with the disease.
In one respect, the MND Association's situation is `easy' or at least manageable. We have a very specific user group, homogeneous to the extent that they have one condition, varied as it is. Neil Small and Penny Rhodes have tackled a much broader issue: user involvement in palliative care in general. To do so, they have looked at three conditions — multiple sclerosis, MND and cystic fibrosis — aiming to identify common elements.
These diseases certainly exemplify the need for services and practice that is much more patient centred. Far too often, the way services are delivered makes them almost as much a burden as a benefit for patients. Equally, they present the challenges of exploring service delivery with users who for various reasons are reluctant to confront the nature of their condition.
Sadly, the sum of these parts in Too Ill to Talk? adds up to less than a whole. An extensive review of the literature on user involvement at the start of the book provides some interesting perspectives on the impact of serious illness on people's lives. This is the best chapter in the book. It is followed by an overview of palliative care in the UK and possible approaches to user involvement in this area. The new work is presented in the next three chapters, which report on narrative interviews with people with each of the three chosen conditions. A brief final chapter extracts conclusions.
The greatest problem with this book is the written style. It is crammed with jargon that makes it difficult to read for anyone not fluent in this particular subset of English. (As the quotations in the text are equally laden with this kind of terminology, I have to assume that it will be familiar to some.) For example, surely `accounts of the same experience… can embrace different discourses and understandings' could have been said more simply. Similarly, `Much research has served to perpetuate an individualistic view of disability and to locate its concerns within a functionalist and interactionalist paradigm' may be immediately clear to some, but for the less specialist reader it is hard work. The book claims to aim at diverse audiences including `students on health studies courses, health professionals, and policy makers'. I cannot see any of them having the time to fight their way through such linguistic density.
Anyone who does so will be disappointed. Having started from an important initial set of questions, and generating more as it goes on, the book doesn't answer any of them. The narratives retell the experience of living with the respective conditions, much as previous publications have done, but they don't illuminate the topic of the book. Inevitably therefore there are no real conclusions other than to repeat the theoretical framework constructed by their authors within their literature review.
Perhaps the problem with this book is that the questions are too big for the research methodology chosen. As it stands, while it may offer some interesting start points for further academic investigation, Too Ill to Talk? fails to satisfactorily address either the practical `how' questions that most of us wrestle with or the more ambitious `whether' that it sets out to examine.