Table Box 1.

User involvement and mental health ¹²

Benefits

• Service users are experts, with an in‐depth knowledge of mental health services and of living with a mental health problem. These experiences are an important resource that can help to improve individual packages of care as well as services more generally.

• As a result of their experience of mental illness, service users have developed a range of coping mechanisms and survival strategies that help them to manage their mental health problems and go about their daily lives as best they can. If mental health practitioners do not tap into this expertise, they make their own jobs much harder by focusing on users’ weaknesses rather than building on their strengths.

• Service users and mental health workers often have very different perspectives. As a result, involving users can provide extremely rich data that prompts practitioners to re‐evaluate their work, challenges traditional assumptions and highlights key priorities that users would like to see addressed.

• Users have been able to develop alternative approaches to mental health that might help to complement existing services or suggest new ways of thinking about mental health.

• User involvement can be therapeutic, enabling people to feel that they are being listened to and that their contribution is being valued. Helping to shape services – particular when users work together collectively – can also help people to increase their confidence, raise self‐esteem and develop news skills.

Barriers

• There is a lack of accessible information.

• User involvement, if done properly, can be expensive and time consuming.

• Existing mechanisms for involving service users in their own care may be limited in terms of their effectiveness (e.g. care planning or formal complaints processes).

• Professionals wishing to promote user involvement frequently express concerns about the ‘representativeness’ of individual service users, sometimes suggesting that particular users may be ‘too well’, ‘too articulate’ or ‘too vocal’ to represent the views of users more generally. While it is important that all users with views to contribute feel able to become more involved, a number of commentators emphasize the danger that the concept of ‘representativeness’ can be used as a sub‐conscious method of resisting user involvement 13 (see ref. 13 for a response to this issue).

• Many mental health services may not be conducive to user involvement. For some people, mental health services can be experienced as extremely disempowering, with users being compulsorily admitted to hospital and medicated against their will. Users’ contributions may also be discounted as a result of their illness or of public attitudes about risk and dangerousness.

• User groups seeking to campaign for more responsive services often face a range of practical difficulties, such as financial insecurity and a lack of training.

• Some workers may find it difficult to view service users as experts and resist moves towards greater user involvement.