Lived experience: a vast and often untapped resource


Recently I had the pleasure of participating in the Health and Social Care Academy’s ‘Putting Personal Experience at the Heart of Integration’ seminar. It was an interesting and thought-provoking evening. I had been asked to give a short provocation on the topic of ‘How do we achieve a two way dialogue in health and social care?’ and suggested that we will not achieve our aim of a genuine two-way dialogue until we placed lived experience right at the heart of the design, delivery and review of services.

For Scottish Recovery Network, lived experience is central to all we do. The concept of mental health recovery is based on lived experience – on the experiences and stories of people living with mental health problems and of recovery. So what do we mean by lived experience? It is the understanding, expertise, wisdom, knowledge of people who have lived with mental health problems and have that real life experience of going through difficult times and finding ways to overcome them or keep going.People

There are many examples of this rich evidence base of lived experience including SRN’s narrative research and a clear picture of what supports people in their recovery has emerged. However this evidence is not always recognised by those making decisions as it doesn’t fit within what is a fairly narrow view of evidence prevalent in our mental health services.

In SRN we work with a lot of mental health services and find that while they are enthusiastic about recovery they find translating recovery concepts into practice very challenging. To give one example, our work supporting services to use our self-assessment service development tool SRI 2 has highlighted that many services struggle to effectively involve people in care

planning and setting their own goals, despite this being the basis for person centred care. Achieving that genuine two-way dialogue between practitioners and people using services needs more than enthusiasm – it needs some changes to
the way services are designed and delivered. Ensuring lived experience is at the heart of all we do is a fundamental change for many services and we need to be bold if we are to achieve this.

To this end SRN have been promoting the creation of peer support roles in services for a number of years. Peer workers are people with experience of mental health problems who are trained and employed to support others in their recovery. Peer workers intentionally use their lived experience in a way that inspires hope and offer support as an equal. In this way they walk alongside people rather than leading or pushing and are focused on wellbeing.

Changing the skill mix and balance between traditional mental health professionals and people whose expertise comes from ‘lived experience’ has the potential to transform services by visibly demonstrating the value of lived experience and the reality of recovery. Evidence shows that creating peer support roles not only benefits people using services; it also benefits those people in recovery who are trained and employed to fulfil the roles and the services they work in. According to a number of UK studies these benefits include increased focus on, and understanding of recovery; better awareness of the value of live experience and reduced stigma in staff teams and an associated reduction in them and us attitudes.

Integration provides an opportunity to think again about what we do. More or less of the same thing is not going to meet the challenges we face in ensuring services are person centred and empower people to lead their recovery. To meet these challenges we need to maximise all of the resources available – and lived experience is a vast and often untapped resource.

I acknowledge that many working in mental health services would say that they do value lived experience. However I would also ask why there is not more tangible evidence of this in our mental health system?

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