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Experts by Experience (EbyE): The power of lived experience

There is rich evidence that people who have experience of using services are uniquely placed to help plan and develop those services. Service users and their carers are ideally placed to educate and de-stigmatise the issue of mental health; one person, one team, one organisation, at a time.

This approach is fundamental to what we do at Experts by Experience (EbyE). We are a social enterprise (set up in 2013) led by people with lived experience of mental ill health. Through our projects, involvement, engagement, education and training work we are experts in improving mental health for everyone through this wealth of lived experience.

“EbyE is a shining example of how those who have lived experience of mental illness – so often written off and stigmatised – are capable, creative and insightful.” (EbyE Expert)

Our work demonstrates the importance and impact of working in partnership with people with lived experience. It also demonstrates how sharing power between our experts, our commissioners and their service users leads to better outcomes for all involved.

The power of working in partnership

Our work at EbyE is a way of showing how, through skilled facilitation, teaching, advocacy and support, we can help to facilitate more productive and mutually beneficial relationships between practitioners and clients. This ranges from one-to-one engagement between a practitioner and their client, to workshops for students training to become health practitioners, to working on an organisational or strategic level between providers and their various cohorts of service users. By working in this way we offer benefits to our Experts, to current and future practitioners, and to commissioning organisations (both statutory and third sector).

We follow an active partnership approach with our Experts and our clients, co-working with service users and carers, alongside staff and the commissioning organisation. Across these partnerships we focus on:

  • showing interest, curiosity and mutual respect in and for each other’s perspectives throughout the process
  • empowering service users, carers and organisations to carry out excellent involvement work
  • learning from each other, which achieves mutual benefits for our service user and carer consultants and our clients.

In this way we move forward together towards a shared goal; learning about each other’s aspirations, limitations, and overall our shared humanity and commitment towards a common purpose.

“We brought Experts by Experience in in response to the increasing complexity of the nature of our students’ mental health needs. We all came away with holistic approaches to caring for ourselves and a stronger conviction that young people with mental health struggles can work towards coping and ultimately thriving.“

New relationships & shifts in power

“A much more in-depth understanding of co-production and inspiration and motivation to work in partnership with service users.” (MA Occupational Therapy student)

We also explore the clinician/patient dynamic through this way of working. We develop a slow burning but long-lasting shift in focus of power as a result, as exemplified by the British Psychological Society’s Power Threat Meaning Framework. This helps people create more hopeful narratives or stories about their lives and the difficulties they have faced or are still facing, instead of seeing themselves as blameworthy, weak, deficient or 'mentally ill'. By highlighting and clarifying links between wider social factors (such as poverty, discrimination and inequality), traumas such as abuse and violence, and the resulting emotional distress or troubled behaviour, it offers a powerful alternative to the clinical model of diagnosis and disorder.

“It’s made me realise the value of what I have to offer and how I can use the power I have to impact a service user’s experience for their future engagement in services/learning services.” (MA Social Work student)

EbyE has worked with Southwark Council over the last 4 years on a range of projects, including a significant commission involving residents with mental ill health that they support. Southwark Council and the NHS believe that people who use mental health services should have a choice about where and how they live. The council was keen to give support to people with mental health issues currently living in supported accommodation, which includes people who may want to live more independently. Our Experts engaged with some 170 residents living in council-supported accommodation to find out their support needs and aspirations.

Through the project we have built up a positive partnership of trust with this client group, on behalf of the commissioner. We believe that we could do this because we all had a range of lived experience to contribute. We amplified those people’s voices back to the commissioner, which directly influenced service provision.

EbyE Experts were able to share their own lived experience of mental ill health with participants, which helped put interviewees at ease and empowered them to open up and share a deeper connection. Sometimes the interviewees could relate to the recovery stories of our Experts and that helped develop a trusting relationship. Interviewees also felt more able to talk about their fears and concerns.

Commissioners found this powerful too, due to the very high engagement rates. Nearly 90% of eligible Southwark residents living in mental health supported accommodation (many of whom had been deemed 'hard to reach'), engaged with us. The commissioner also valued the amount of rich information gathered and analysed. And NHS England commissioned a best practice report about our work on this project and approach.

The power of a recovery-based approach

“Working for EbyE I feel that what used to be my biggest shame is now my greatest asset.” (EbyE Expert)

More recently EbyE has been commissioned to provide peer support, using an active learning model, to peer mentors who in turn support people with complex mental health needs. We have helped to nurture a shift in the commissioner’s approach from clinically driven treatment to valuing and emphasising holistic (social) peer support. We believe this approach will help the commissioner provide an improved support service that better fits the needs of all its service users. Everyone benefits: the lived experience peer mentors (who need support both to be more effective mentors and manage their own ongoing needs), the people they are mentoring, and the commissioner who needs to demonstrate improved outcomes.

That sense of multiple benefits runs throughout our work. We see our Experts engage in work-related activity, increase self-esteem, confidence and skills, and reduce social isolation - soft outcomes which can massively impact on every area of their life. Our students benefit from a client-based perspective which they have said "brought the teaching to life" and equips them to become better practitioners. Service users benefit from support that better understands and is more responsive to their needs. Commissioning organisations benefit both from improved outcomes and implicitly learning new ways of engaging with their service users.

Treatment has an obvious bias towards pathology and deficit. Our way of working instead promotes a recovery-based approach and sees our Experts as people with very valuable assets and highly worthwhile skills to contribute to society. We think it is an important shift in power – and itself incredibly powerful – to recognise these strengths, and use them to direct and inform new ways of working.

“We are making a meaningful difference in the world of mental health. I am so proud to be part of, and growing, in life and in recovery within EbyE.” (EbyE Expert)

Graham has been a Mental Health Service User Consultant since 2011. In 2013 he joined Experts by Experience, where he is Operational Director, overseeing the day to day running of the social enterprise with involvement in teaching and project work.

D is founder and Chief Executive of Experts by Experience. She had a successful career with the Home Office for just short of twenty years before being medically retired in 2005. In 2008 she embarked on a new career as a Mental Health Service User Consultant. In 2013 she established Experts by Experience, which provides a range of services to NHS Trusts and Commissioners, private hospitals, Universities & schools, professional bodies and third sector organisations

Author

D Rosier

CEO, Experts by Experience

Graham Hadley

Operational Director, Experts by Experience