Legislating for User Involvement in the United Kingdom: Mental Health Services and the Nhs and Community Care Act 1990

Abstract

Recent legislation in the U.K., particularly the NHS and Community Care Act 1990, has encouraged the direct participation of service users in the planning and management of care services. This paper explores evidence of how the interests of service users experiencing mental distress are represented within community care services in the U.K. and the extent to which this leads to a devolution of power to those service users. The evidence is drawn from a survey of principal officers in social services departments responsible for mental health services and interviews with 135 service users. This reveals considerable confusion about the meaning and purpose of user involvement and about how service users can best be represented; little evidence, despite users' interest in it, of power-sharing; and limited commitment of resources to make further participation possible. The conclusion considers how, in the light of this evidence, Central and Local Government might further develop user involvement.

Systematic review of involving patients in the planning and development of health care

“…15 16 We also identified reports in which patients described dissatisfaction with the process. 17 18 Several studies commented that staff involved in initiatives found the experience rewarding, 9 19 20 but others describe difficult relationships between patients and staff 21…”

The effects of galantamine treatment on caregiver time in Alzheimer's disease

“…In addition, among patients with caregivers, institutionalization is closely associated with caregiver exhaustion and patients' need for supervision (Hux et al, 1998). Including measures of outcome for caregivers in clinical trials is therefore important and likely to be of increasing relevance given the policy-driven moves to community-based care in the UK (Bowl, 1996) and other countries.…”

How do managers and leaders in the National Health Service and social care respond to service user involvement in mental health services in both its traditional and emergent forms? The ENSUE study

“…The emphasis on cultural change, and promoting democracy and representation, however, mirrors other work 22,23 in relation to the National Health Service and Community Care Act 1990. Iles and Sutherland 37 stress that not all members of a culture need to be compliant with proposed changes for them to come about.…”

“…Barnes and Bowl,21 writing as academics, considered the development both of autonomous action by SUs and the way in which officially sponsored initiatives interacted with this and, in some cases, led to tensions between 'official' involvement initiatives and grassroots activity. Bowl,22,23 for example, found that consultation mechanisms designed to give mental health SUs a say in service planning and delivery in accordance with the 1990 provisions were little more than rubber-stamping exercises. Others have also explored the importance of collective action to enable those often regarded as incompetent to contribute to debate about services to have their say.…”