Participation in arranging continuing health care packages: experiences and aspirations of service users

This paper examines patients' and carers' experiences of receiving community health services, and considers the degree of patients' participation in the management of their continuing care.

Care management, advocated for many years as a way of ensuring appropriate and coordinated care, emphasizes the involvement of patients and carers in care planning. Evidence suggests that such involvement is unusual.

Semi-structured interviews were carried out with 99 continuing health care patients and/or their carers.

A few informants had willingly chosen to be active in arranging and coordinating their care, and a few others, who did not take an active role, were very satisfied with the services which they received. The majority, however, were not satisfied, feeling unclear about how their needs had been assessed and how services had been arranged. They were mostly disappointed by the absence of information and by the lack of regular contact with NHS and/or Social Services personnel. Some had felt compelled to become proactive in order to ensure that the care provided was adequate.

Community nurses are valued by patients, and are well placed to be care managers. However, less qualified staff are also able to offer the regular support and information which patients want and value.