“I’ve seen the massive positives of using my lived experience”


We are celebrating Co-production Week this week (1 July), hosted by the Social Care Institute for Excellence. Zoe, from the Rethink Mental Illness co-production team, shares why co-production is so vital to the work we do. 

When co-production is done properly, it creates resources, systems, and effective services that truly meet everyone’s needs. It empowers knowledgeable and experienced individuals to contribute to decisions, shaping the future direction of services and creating real, positive change. 

At Rethink Mental Illness, our Lived Experience Programmes Team works with Provider Collaboratives to make sure that co-production is a key part of specialist inpatient services. Provider Collaboratives are partnerships that bring these services together to provide better care for their communities. We train Experts by Experience (EbEs) to ensure a diverse range of people with lived experience have an equal voice in decision-making at all levels, from ward to board.

Caleb, an EbE in our Provider Collaborative Adult Eating Disorder Pathway, describes the importance of co-production and involvement

"Becoming involved with Rethink Mental Illness has changed my life. I have found purpose in my suffering and joined something bigger than me. I joined Rethink through a lived experience opportunity when I was inpatient on an eating disorder unit. At the time, I saw how much things needed to change within the mental health system and thought I’d give it a go.

"I started by being a participant in focus groups and have now become an Expert by Experience for my local provider collaborative for eating disorders. This role is so fulfilling - I’m able to work with the NHS and make a real impact on my local services, staff and service users. My journey through mental illness hasn’t been straightforward, but Rethink has been by my side the whole time. 

"I’ve been involved in lived experience work with Rethink Mental Illness while inpatient and outpatient. I think both experiences are extremely important to be listened to and used to improve outcomes. They offer different perspectives of services, as someone in inpatient can have different views on things than those that have gone through it and are now outpatient. I’ve seen the massive positives of using my lived experience to benefit those who may not have gone through the same things as me, to foster empathy and compassion within them so they can learn and grow. 


  • I see my future in a positive and meaningful way, which I never thought would ever be a possibility

    Caleb Caleb

"I have developed my skills with training and experience and now feel much more confident in my abilities than ever before. I love the time I spend volunteering for Rethink Mental Illness and value hearing other experiences and perspectives. I have learnt a great deal, and really cherish every call and involvement role I have done.

"My work with Rethink Mental Illness has made me empowered to strive for more. I have realised the true value of my own lived experience. Now, I see a path forward for me to become somebody who tells my story so that it can help others and change the system. I want to become an ambassador for change and I see my future in a positive and meaningful way, which I never thought would ever be a possibility.

"I’d recommend anyone with lived experience to become involved in Expert by Experience work. Use your voice for powerful insights and change within anything that you are passionate about.

"Thank you Rethink Mental Illness for helping me realise my full potential, and giving me the opportunity to empower others and myself to make change."

Sarah, an EbE in our Adult Secure Care Pathway, similarly describes the importance of co-production and her involvement

"I was interested in becoming an Involvement Champion because I had been a ward rep for quite some time and found we were usually talking about the same issues, but rarely managing to sort anything. I thought this would be another way to try and get my voice heard.

"For me, the key thing about coproduction is that it's a partnership between us and the people that make changes happen. At meetings we can share lived experiences which can be really useful.

"The lead Occupational Therapist asked me if being an Involvement Champion would be something that I'd be interested in. So far I have been involved in three different things:

"Monthly Expert by Experience catch-up meetings: This is an opportunity for us to check in with Rethink Mental Illness. We can talk about meetings we have attended and are told about opportunities coming up. We also discuss what we want to have in the monthly newsletter. These can be positive or negative things, can include poems and drawings as well as words. We are trying to ensure this is distributed across staff in all hospitals. We feel this will be a useful way of providing feedback to staff and encourage change if needed.

"Training: Recently I worked with Rethink Mental Illness to co-produce their Expert by Experience Involvement Champion Training. Seeing as I'd recently been through the training myself, I knew which areas we found OK and which areas we struggled with, and I was able to find some different ways of explaining things. I also used two examples from my time in hospital, one about creating boundaries and one on safeguarding. They were really useful and raised lots of questions to help explore the subjects.

"Care planning resource meetings: We’ve learnt that different hospitals do things very differently when it comes to care planning. Some Involvement Champions have never seen a care plan, some have care plans that are out of date and the lucky ones go over theirs regularly with staff.

"During these meetings we discussed having a document for service users to have on admission and what would be useful to put in it. We are now co-producing this resource and it will be shared across all services in the Provider Collaborative.

"And soon I am going to be involved with the Women’s Pathway!"

Our commitment to co-production is not just for this week. Our Lived Experience Programmes Team are dedicated to embedding co-production in everything we do, ensuring that it remains a ‘golden thread’ running through all of our projects. By working with and listening to those who have lived experience, we continue to create lasting and meaningful change where it is needed the most.