User participation

Penny Hibberd introduces an innovative idea for involving carers in higher education, and carers Caryn and Ted Bird explain how they have benefited from the approach 

In this second of two articles on community mental health nursing in dementia care, John Keady and Trevor Adams review published accounts of the CMHN role in work with people with dementia and their carers, and suggest a way in which the role might develop in future.

Background: Individual assessment of needs has been recognised as the most appropriate way to allocate health and social care resources. These assessments, however, are often made by the staff or by a carer who acts as an advocate for the user themselves. Little is known about how these proxy measures compare to how individual patients perceive their own needs.

Aim: The aim of this study was to measure and compare ratings of need for older people with mental health problems by the older person themselves, their carer, and an appropriate staff member.

Capital is a user‐led training, consultancy and research organisation based in West Sussex. When the local mental health trust decided to evaluate its assertive outreach team, Capital bid to conduct a qualitative review through one‐to‐one interviews with the team's clients and their carers. In this candid article the project team members describe the process, the hurdles and obstacles they encountered, how they were negotiated or overcome, and what they learned from the experience.

This paper addresses a number of issues concerning the future prospects for social work and mental health in England and the implications of these for social work education. In particular the significance of interprofessional practice and education will be examined and these will be located within the wider context of the social work contribution to mental health services. The experience of social work in promoting the interests and involvement of service users and carers and of working within a holistic model will also be recognised.

A focus on outcomes and a desire to improve assessment and support to carers are central to government policy, crystallized in the 2000 Carers and Disabled Children Act. This paper explores the benefits and challenges of implementing an outcomes approach to carer assessment and review, highlighted by a research and development project, undertaken in partnership with one local authority. The project developed and tested research‐based practice tools which aimed to promote carer‐centred practice, together with clarity in communication and recording of outcomes intended and achieved.

Describes how the Lancashire Dementia Research Group (LADRIG) has given people with dementia and their carers an active role in the development of research projects.

This paper provides an account of how family carers were involved in a longitudinal research study that aimed to investigate the needs of ‘new’ family carers of stroke survivors. An account of how the researcher involved carers is provided, followed by one carer's description of the benefits and negative consequences of being involved in the study. Suggestions are made about how to develop good practice with regard to involving people in research. The conclusions highlight that, although rewarding, being involved in research is not without its challenges.

There is increasing emphasis on enhancing consumer and carer participation in the planning and provision of mental health services. However, health professionals, consumers, and carers have different perceptions about what constitutes optimal care; identifying, negotiating, and meeting their respective needs can be challenging. The aim of the paper is to highlight the challenges of facilitating carer participation in daily practice and emphasise the broader issues that would benefit from more extensive discussion among health professionals.

The Parkinson's Disease Society has produced a DVD, Being There, which aims to answer the questions and concerns of people newly diagnosed with the condition. Being There provides an insight into symptoms, treatments and life with Parkinson's in general, and includes interviews with people with Parkinson's, carers, and expert healthcare professionals The DVD is divided into four chapters: introduction to Parkinson's disease; treating Parkinson's; living with Parkinson's; and about the Parkinson's Disease Society.