ZeZe's Blogs

“Experts by Experience”

“Co-Production”

“Youth Lived Experience”

As a clinician, you’ve probably heard these terms thrown around from time-to-time. It probably was not a big thing… until now!

Now, all regions are turning into provider collaboratives with NHS England, recommending lived experience incorporation is woven into the tapestry that is mental health services transformation.

But why? What is so important about Experts by Experience? What do they mean? How can they help us?

Well, as you know, for the West Midlands Inpatient CAMHS Provider Collaborative (WMCPC), we have two brilliant young people as our Experts by Experience (EBEs for short).

There is Charli, an LGBTQ and autistic young person with physical health complications which exacerbate her mental illness. Her experience was of being on a CAMHS ward which was unnecessarily traumatic and inappropriate. She now works with various agencies such as the British Institute for Human Rights to ensure there is reduced restrictive practice on wards. CETR panels have the honour of having Charli on board to review care for different young people. She does loads of activism and campaigning about autism, whilst being an influencer on Instagram and #IWill ambassador… I really don’t know where she gets the time amid being a uni student also!

Then there is me, the one who is writing this right now, ZeZe, who is a young autistic person of colour with experience of PICU and low secure. Her illness was psychosis and emotion dysregulation/complex trauma (or what they call “personality disorder”). She used to have Medication via Injection and required up to three staff as support at any one time. She now works with the Royal College of Psychiatry, Birmingham mental health services and international partners to campaign for mental illness. In the process she has done a TEDx talk and picked up a few awards. Her goal is to set up a charity for autistic young people as well as to go to medical school.

Well, us Experts by Experience have lived experience of mental ill health- that is certain! We use our lived experience from when we were poorly to impact systems change, so that others with lived experience don’t have to encounter the same challenges of access to specialist care in a timely manner.

Now, onto co-production! Co-production is a term which embodies a partnership between those with lived experience and those in power. Often in clinical or managerial systems, there is a power imbalance. Co-production is about equal sharing of power, where those in receipt of services and those delivering services are equal stakeholders in a relationship of improvement of care. We collaborate with clinicians, commissioners and the like, to share a common goal- make services more effective and efficient for young people, improving recovery outcomes, reducing readmissions…all the things the Provider Collaborative premise is set out to do! In basic terms, we are as useful as you clinical guys and we can work together! You offer the clinical expertise and we offer the raw pain to catalyse meaningful change! We want this to be truly meaningful so we are more than willing to work with you with any improvement projects you would like support with!

We help to co-produce every single decision within the WMCPC by ensuring it goes through us so that we can ensure there is excellent care and compassion from a youth lens. This includes participation workstream meetings and partnership board meetings. We review documents that will affect young people, create co-production strategies and are trying to set up a Lived Experience Collective, full of service users with lived experience of carer experience of inpatient CAMHS.