This book presents a detailed account of how 13 people with learning disabilities experienced living and dying of cancer. Funded by Cancer Research UK, the author spent three years participating in the lives of individuals and their carers/supporters, even attending the funerals of some participants. Given the pressure on research funding, this type of study is becoming a luxury; yet it provides a valuable insight into the needs of people with learning disabilities as they move towards death.
Many of the themes derived from the data frustratingly re‐iterate previous research concerning vulnerable adults who have cancer. A major finding of this particular study is just how resilient and philosophical people with learning disabilities are in the face of extreme adversity: accepting their often delayed‐diagnosis; having to contend with “doctorish” talk (put so beautifully by Jane Bernal on p. 253) including ambiguous or incomplete information; dealing with health professionals ignorant of alternative communication modes; rarely complaining about pain; not being believed when they are in pain due to diagnostic overshadowing; experiencing unfair treatment including being ignored by health services; and feeling acute loneliness as their lives ebb away. The author suggests that such resilience has developed from years of being overlooked or/and not taken seriously by so called “professionals”. It would appear that such nanny professionalism extends to the research ethics arena. Two participants explicitly requested their real names be used in the book, but their wish had to be approved by the research ethics committee!
This book also starkly re‐iterates one of the terrible ironies of community care: that whilst we have fostered independence for people with learning disability, we have not adequately sought to help individuals recognise their own health needs or trained support workers to identify health changes in those they care for. Further, although community care environments were supposed to be “for life” for those experiencing them, services appear to be ill equipped to deal with cancer. It is not unusual, therefore, for people with learning disabilities who have cancer to be moved from their “homes” to live out the rest of their days in residential or nursing homes, where staff have little knowledge of learning disability. Some, fortunately, end their days in hospices, where staff understand and foster simple notions of dignity and respect to all patients regardless of their “other” diagnoses. There is clearly a need for more beds in hospices in general, and both health and social care services could learn much from adopting the hospice ethos (see Duplock et al., 2009).
Whilst many studies claim to be ethnographic, this research really is a superb example; the author engages in participant observation in a manner akin to the original anthropologists. The analysis is equally rigorous. Each chapter ends with useful summary points, but once you start reading this book, you will want to read every word.
