Intellectual Disability and Ill Health – A Review of the Evidence

Citation

O'Hara, J., McCarthy, J. and Bouras, N. (2011), "Intellectual Disability and Ill Health – A Review of the Evidence", Advances in Mental Health and Intellectual Disabilities, Vol. 5 No. 6, pp. 58-60. https://doi.org/10.1108/amhid.2011.5.6.58.2

As a medical student undertaking an attachment to a long‐stay hospital for patients suffering “mental handicap”, I undertook a project to describe the somatic manifestations of phenylketonuria in the adult residents. Armed with background reading which clearly described that, as the condition was a disorder of phenylalanine, it also lead to some degree of albinism with all affected patients having blonde hair, blue eyes and photosensitivity, I was able to write up all 13 patients, resident in the hospital, all of whom had dark hair, varying colour of eyes and skin untouched by the effects of work in the gardens or farm.

The tenuous evidence base on which syndromes and illnesses associated with intellectual disability were described was based on limited contact with patients hidden behind high walls and kept away from mainstream medicine. Now that those patients have moved into the community and primary care predominately is faced with their continuing care (Lindsay, 2011; RCGP, 2009) it is important that we develop a strong accurate evidence base. Within a short time of their gradual discharge from long‐stay hospital, we all became aware of Kerr's crisis (Kerr, 2004), that is, a significant minority population with a high mortality, a high‐idiosyncratic morbidity associated with increased difficulty accessing health care services. As we progressed, the importance of dysphagia and reflux and respiratory tract infections became apparent (Harding and Wright, 2010). A year after, book is published Duncan Watts (2011) brings us “Everything is obvious – once you know the answer” challenging sloppy thought based on comfortable and usually comforting concepts which are obvious until challenged. He makes no mention of patients with intellectual disability, but his ideas clearly show how “diagnostic overshadowing” develops as we misinterpret symptoms and signs as part of the disorder of intellectual disability rather than idiosyncratic morbidity producing more complex symptoms of disorders we know little about. The concept that “everything is obvious”, that what we assume about patients will eventually prove to be true is clearly, as exemplified in my simple series of patients with phenylketonuria, no longer, if it ever was, of benefit either to the patients, those who treat them or their carers and leads to that diagnostic overshadowing in turn leading to poor diagnosis and management. This book challenges every reader involved to consider and reflect on current practice and try to improve it – it pulls down the remaining walls of thought and ignorance built around these special patients and demands, by its example, we do better in both practice and research.

Each chapter deals with a different aspect of health care for adults with intellectual disability and the authors of each chapter have undertaken a literature search, the details of which are described for each chapter, detailing evidence of the incidence, presentation, diagnosis and treatment of the conditions we encounter in the care of adults with intellectual disability. The editors state that they have deliberately tried to get experts in the field of the topic described in each chapter to do the searches rather than provide a uniformed pattern of presentation. Some chapters are also affected by the limited amount of evidence available within some aspects of care, but this is not a deficiency of the authors or book which is a baseline which we need to improve from and is a magnificent and essential contribution to our progress in care.

Access to literature on adults with intellectual disability has not been widely available in the mainstream journals (Martin, 2005) and the authors are to be congratulated in bringing this little read literature together in such a compact and useful volume with each chapter ending in a comprehensive up to date list of relevant references. There are few, who would read it cover‐to‐cover, but simply looking up individual topics presents the reader with a skilled, experienced evidence‐based analysis of all aspects of the condition discussed as far as current literature describes them. Some comment is made of the quality of the research, the lack of accurate randomisation, the effect of sample sizes but the authors make no great effort to compare the results of different studies leaving the reader to compare and actively reflect. Wherever possible, comparison between adults with intellectual disability and others are made, but many sections of the book clearly highlight the limited research that has been undertaken in immensely important aspects of care and the lack of comparison studies.

In spite of the massive amount of material presented in this book, the sections are easy to read and the book is well arranged for rapid reference. It is at a price, which is economical and would be considered cost affective by any organisations who purchased it. I cannot see how any Community Learning Disability Team cannot have this book in its library. I cannot see how anyone lecturing, teaching or tutoring in the care of adults with learning disability cannot have it easily available, once per week, to tidy up, strengthen and make more relevant his or her teaching. Those undertaking annual health checks on adults with intellectual disability in a meaningful way (Houghton and The RCGP Learning Disabilities Group, 2010) would benefit from reading this, in that, it would enthuse them into ensuring a 100 per cent take up of the checks and thereby preventing significant morbidity and distressing mortality. Commissioners of care, in whatever shape or form the new legislation creates them, need this book to both justify and encourage them to seek adequate services for this particular minority group.

If one has to include some negative comments, my only comments would be that a significant cause of distress and difficulty with management in the care of the adults with intellectual difficulty involves managing them within the community in which they live or the family in which they stay. There are increasing evidence bases on how carers and older family carers can be supported both through the periods of care of their young adult with intellectual disability and at times of change, premature dementia and disability and subsequent bereavement. Perhaps the next edition of this text will include an evidence base referring to these important aspects of care.

As it is, however, this volume, however, is indispensable to everyone involved in the care of those with intellectual disability and should be made widely available as part of any national programme to improve their care – it will certainly be included in the reading list of the revised RCGP curriculum to be published next year.

Peter Lindsay

Peter Lindsay is a General Practitioner, The Thakur Practice, Leeds, UK.