Patients say Experts by Experience (EbE) work has ‘changed their lives’

Phillip* from Northfield ward in Birmingham, still remembers the first time someone genuinely asked him what he wanted from his care. He was 24 and had already been at St Andrew’s Healthcare for two years.

Before joining the Experts by Experience (EbE) group, he had never really thought about co‑production. To him, it sounded like one of those words professionals used in meetings. But the training changed everything.

He said: “I started to learn about co‑production and what it actually meant. I learnt that it’s a way of working together, so my voice matters just as much as anyone else’s.” For the first time, he was shaping his own care plan. He added: “It meant saying, ‘I want unescorted leave so I can go to college,’ and being taken seriously.”

Today, he is studying maths, with engineering firmly in his sights and he has also been nominated for the Outstanding Learner Award by his college.

The EbE group forms a key part of the Champion Strategy, which sits across our Voice and Society ambitions. Together, these strands create a clear roadmap for how we bring our charity’s vision to life.

Over the past year, significant work has taken place across the five Champion sub‑groups, including the EbE group, which has been particularly active in Birmingham.

Led by Clinical Inequalities Lead Cheryl Nyabezi and Kofi Abrefa, Coproduction and Carer Lead, the group has already transformed the experience of many patients.

Cheryl explained: “Much of this work was born out of the findings from my Inequality Service Evaluation. I started to see a worrying pattern where patient voices weren’t showing up in their notes or care plans. Their stories were missing from the very documents meant to guide their recovery.

“I realised the highest priority for us was strengthening the patient voice and improving how we work collaboratively with patients, recognising and valuing their lived experience and existing skills. Recurring themes in patient feedback directly shaped and informed my next steps.

“So, I rolled out a CQI project specifically to improve the patient voice in their notes. I’m currently working on a model that will improve the patient voice in care planning and the patient journey from admission to discharge.”

Cheryl also built the EbE group – which became part of the Champion Strategy. From there, she began campaigning to get patients more involved.

In just a few years, Cheryl and Kof’s work has become firmly embedded in the culture of Birmingham. Patients now routinely sit on recruitment panels, inform candidates when they have been successful, help run inductions, and co‑create newsletters for other patients.

Cheryl said: “I cannot tell you how rewarding it has been for me to see these patients grow in confidence.”

Paul*, who has been at St Andrew’s for four years and currently resides on Lifford ward, agrees. He said: “Being involved in EbE has changed my life. It’s been really fantastic and really rewarding. Having been part of the recruitment panel was great, and when you see the people you’ve helped recruit actually working here, it makes you feel really good. I definitely feel more equal.

John*, from Hazelwood ward, has only been at the hospital for 12 months but has already become deeply involved in EbE work. He had been in secure services for six years and had done EbE work before, but something about St Andrew’s felt different. He said: “I’ve seen a dramatic and positive change. My voice is heard. My goals are met.”

Working alongside professionals made him feel valid - not a problem to be managed, but a partner in his own recovery. His confidence soared. He has already helped with four staff interviews and is now planning to go to college to study food hygiene.

Ben*, from Hawksley ward, has also experienced a profound shift. He openly admits he had been violent throughout his life, frequently in trouble with the police, and often misunderstood. At first, he wanted nothing to do with EbE. But Cheryl and Kofi persisted.

He said: “They kept knocking on my door and asking me. Eventually I gave in, and I’m so glad I did. For the first time in my life, I feel happy and useful. It gives me a reason to get up in the morning. They’ve helped me to get smarter and wiser.”

*Names of patients have been changed to protect anonymity.