Recent UK government initiatives aim to increase user involvement in the National Health Service (NHS) in two ways: by encouraging service users to take an active role in making decisions about their own care; and by establishing opportunities for wider public participation in service development. The purpose of this study was to examine how UK cancer service users understand and relate to the concept of user involvement. The data were collected through in-depth interviews, which were analysed for content according to the principles of grounded theory. The results highlight the role of information and communication in effective user involvement. Perhaps more importantly, this study suggests that the concept of user involvement is unclear to many cancer service users. This paper argues the need for increased awareness and understanding of what user involvement is and how it can work.
In health care, as in much of the public sphere, the voluntary sector is playing an increasingly large role in the funding, provision and delivery of services and nowhere is this more apparent than in cancer care. Simultaneously the growth of privatisation, marketisation and consumerism has engendered a rise in the promotion of 'user involvement' in health care. These changes in the organisation and delivery of health care, in part inspired by the 'Third Way' and the promotion of public and citizen participation, are particularly apparent in the British National Health Service. This paper presents initial findings from a three-year study of user involvement in cancer services. Using both case study and survey data, we explore the variation in the definition, aims, usefulness and mechanisms for involving users in the evaluation and development of cancer services across three Health Authorities in South West England. The findings have important implications for understanding shifts in power, autonomy and responsibility between patients, carers, clinicians and health service managers. The absence of any common definition of user involvement or its purpose underlines the limited trust between the different actors in the system and highlights the potentially negative impact of a Third Way health service.
Defensive culture of British medicine needs to change Editor-It was brave to devote a whole issue to medical error 1-how to recognise, how to investigate, how to analyse, and how to change systems to improve patient safety. 1 However, we regret that the edition was dominated by American studies, ignoring the British contribution of confidential inquiries and analyses of closed claims, which have significantly improved safety in some well defined areas of medical practice. In the United States the insurance industry provided the impetus for the study of adverse events, 2 and in Australia the government funded a similar study 3 because it was considering "no fault" compensation. 3 In the United Kingdom, for 25 years the Department of Health has financed all successful claims against NHS hospitals and their staff. As a result the need to take a British study beyond the pilot phase may not be supported. 4 Be that as it may, an important issue was not addressed in the BMJ. Behind each adverse event there is a patient, a doctor, and a doctor-patient relationship. A patient must be told when things have gone wrong. Every effort must be made to minimise the after effects, including financial compensation where necessary. Most patients wish to know in detail what happened and what is being done to reduce the possibility of a recurrence. And members of healthcare teams need mechanisms to come to terms with their fallibility. It is to be hoped that clinical governance will make a difference. Meanwhile a change in the ethos of medical practice is required, and it is to this end that Action for Victims of Medical Accidents has set up a group for doctors. Action for Victims of Medical Accidents is often regarded as dealing solely with compensation and litigation, but its raison d'être has always been to improve patient care. In February this year the doctors' group met informally to discuss how best to translate into practice the General Medical Council's requirements of "good medical practice when things go wrong." 5 We are determined to take our discussion forward and would welcome input from others who see the need to change the defensive and exclusive culture of British medicine. Doctors who would like to be involved should contact Dr Anne Savage, who is acting as secretary to the group.
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