Centre for Mental Health calls for a new approach to lived experience leadership

7 December 2022

7 December 2022

Mental health services need to create more leadership roles for people with experience of using them, a new paper by Centre for Mental Health has said today.

Humanising mental health care argues that the way ‘lived experience’ is used within mental health services often reinforces the unequal power dynamics between clinicians and ‘patients’. It finds that too often, the involvement of service users has been patchy, tokenistic and paternalistic, giving a semblance of ‘involvement’ with little genuine shift in power dynamics.

Humanising mental health by David Gilbert says that living with a mental health difficulty forges a unique perspective. But people’s ability to shape services is often limited to tokenistic ‘engagement’ and ‘representation’ opportunities. Creating paid roles and career pathways for lived experience at every level of the system can transform services for the better.

The paper draws on David Gilbert’s experiences as a mental health service user and ‘Patient Director’. It finds that significant steps have been taken to embed ‘lived experience’ within mental health services, such as in Peer Support Worker roles. However, it finds that there are very few opportunities for people with experience of mental health problems to take strategic leadership roles and to shape the direction of services.

Humanising mental health calls on NHS Trusts and Integrated Care Systems to create new leadership roles for people with lived experience. It says that services should expand their ‘lived experience’ opportunities beyond peer support to all levels of the system, including more strategic leadership roles.

It proposes a new specialism of ‘experiential practice and leadership’, which recognises the contribution which can only be made by people with first-hand experience of mental ill-health. And it shares a new vision where this type of knowledge receives the same esteem as clinical expertise.

Dr Sarah Hughes, chief executive at Centre for Mental Health, said: “While steps have been taken to embed lived experience in mental health services, users’ ability to shape services is too often limited to tokenistic ‘patient involvement’. To genuinely transform mental health services, we must move beyond notions of ‘engagement’ which fail to shift the power dynamics. Services which embed paid patient leadership at each level will see real improvements in patient experience and strategic effectiveness.”

David Gilbert, report author and Patient Leader, said: “The NHS needs to create a progression of meaningful career opportunities for people with lived experience. This would enable people to move easily from ‘being involved’ or providing feedback, through to being a peer support worker, and into strategic and leadership roles. Such a systemic approach properly values the qualities we bring – jewels from the caves of suffering – and will help to humanise care and transform services. It will also help hard-pressed staff to keep a focus on what matters.”

Download the report 

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