Opinion Real Lives

Learning from our experts’ experience

Lorna Durrant, Head of Specialist Strategies and Outcomes, Eden Futures

We launched an Expert by Experience (EbyE) programme two years ago because it was the right thing to do. Co-production is essential in helping us understand what services should look like and how people want to be supported.

All Experts are paid for the work they do. They participate and lead in interviews for support workers, managers, PBS coaches and senior roles. They actively contribute to training, in person and by video and audit service quality. Their voices are encouraged, no matter how un

comfortable it might be to hear.


Stefan, 27, is diagnosed with Asperger Syndrome, an Attachment disorder, Borderline personality disorder and anxiety, and has been in health and social care services for many years.

He was detained in hospital for six years before moving into a Derbyshire service. He helped develop the programme and now works as a Learning & Development Coach and Recruiter.

He says: “I became an EbyE because I wanted to make a difference to people’s lives. It gives me a voice to help improve things for others. I’m proud of speaking at Eden Futures’ last conference and presenting at the 2020 Learning Disabilities and Autism conference. I’d love to see more EbyE’s across the country to share experiences.”

Nicola, also 27, has lived in a Lancashire service for two years. Nicola is Autistic and has Emotionally Unstable Personality Disorder. She too has been detained in hospital on many occasions.

She remarks: “I wanted to have a say and share my thoughts and views; and get a sense of achievement by doing paid work. In the early days I had some difficulties with staff where I live. Through training and staff sessions, I explained to them how I feel, to change the behaviour. I’m proud I could talk about my hospital stays and self-harm and how I’ve turned things around. I hope others can learn from my experiences.

“The role has given me confidence; I struggled to talk on the phone and didn’t do video calls. Now I’m taking part in video calls every week! I can take the train to head office on my own, introduce myself to staff and do interviews easily now.”

Gary, 43 from our North-East Lincolnshire service, has a learning disability. He’s been supported by Eden Futures for six years. Having worked as an EbyE with Inclusion North undertaking hospital CTRs, Gary wanted to expand his skills so became an Eden Futures expert 18 months ago.

He says: “I’m listened to and I make things better because I help to get the right staff in services through interviews, service audits, training and project work. I look at what’s working and what could be better. I’ve even met with commissioners in Manchester to talk about Eden Futures – it was the furthest I’ve travelled on my own.”

Recently Nicola, Stefan and I worked together to develop a learning and development programme about supporting people who have experienced trauma. Sharing their own personal experiences will give staff credible insight into the importance of trauma informed care.

I’m delighted to say they’ve also been invited to be a part of the CQC Expert Advisory Panel for Closed Cultures.

I’m overjoyed at what’s been achieved through co-production, but we can always do more.  Future aspirations include recruiting more experts, involving experts on new build design and setting up a peer/advocate support group to support transitions from a hospital or secure setting.

Collaboration, accepting criticism and being receptive to learn, will ensure exceptional quality of life outcomes for those we support through continuous development of our services.


Edel Harris





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