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Soc Sci Med. 1999 Aug;49(4):483-97.

Disputed diagnoses: the cases of RSI and childhood cancer.

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  • 1Social Policy Research Unit, University of York, Heslington, UK.


Recently, greater emphasis has been accorded lay views and involvement in debates on health care provision. At the macro level, policy makers are urged to take heed of the opinions of the general public when formulating new policies for health care or making changes to existing ones. Furthermore, it is suggested that this accommodation should be repeated at the level of the individual, namely in encounters between doctors and patients. However, imbalances in the doctor-patient power relationship, compounded by structural barriers, can create problems which prevent this sort of collaborative interaction from taking place. Against this background, the paper draws on evidence from studies of two quite different conditions, repetitive strain injury (RSI) and childhood cancer, to explore lay perspectives and empowerment in relation to obtaining a diagnosis. The findings of the studies are scrutinised in respect of four related areas of concern: how much lay views count, exercising choice, referral pathways and the withdrawal of trust from medical practitioners. The evidence suggests that a substantial number of patients with RSI and parents of children with cancer felt their experiences and knowledge were disregarded by doctors in the diagnostic process. Denying the validity of an individual's perceptions had implications for obtaining an accurate diagnosis, which could in turn make access to appropriate health care and treatment problematic. Their experiences led some people with RSI to show a general distrust of medicine; this was less the case for parents of children with cancer. A key issue to emerge from the analysis is the need for additional training in two areas of the medical curriculum: communication skills and occupational health problems. The underlying problems of attitudes, especially giving weight to the informed views of lay people, is another matter which needs to be addressed.

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