Frail bodies, courageous voices: older people influencing community care.

Abstract

Involving frail older users of health and social care services in decision making presents particular challenges for those committed to hearing the voices of service users. Age Concern Scotland initiated a project in Fife, the User Panels project, intended to enable older people who were unable to leave their homes without assistance to meet together to develop a collective voice expressing the needs and experiences of older service users. This paper reports on an evaluation of that project. It considers methodological questions posed by the evaluation of projects which aim to empower users, as well as discussing key findings from the evaluation. Older people were recruited through contacts in service agencies and other local organizations. The largest group was aged between 86 and 90 years and all were experiencing difficulties relating to poor health, physical frailty or disability. The project was based on a belief in the value of meeting together as a means through which people could develop the confidence to express their views. Those who became members of the panels valued this experience and reported intrinsic benefits related to the social contact, opportunities for learning and development of self-esteem. Evidence concerning enhanced capacity to exercise control over key aspects of their lives was less convincing. The work of the panels was generally well received by local social work and health agencies and had influenced local action in some areas. Responses to some issues raised by the panels generated a less positive response and the article considers reasons for this. The model is considered to demonstrate benefits both for the older people who become involved and for officials seeking to improve the sensitivity of services to the needs of older people.