NHS Shine a Light on Co-Production: Turning Lived Experience into Community-Led Solutions
What does meaningful co-production look like when lived experience is not simply something to listen to, but something that helps shape decisions, funding and action?
That was the focus of CAPITAL’s contribution to the NHS Shine a Light on Co-Production programme, where we shared learning from our work with the West Sussex Drug and Alcohol Partnership (DAP).
Our session, Turning Lived Experience into Community-Led Solutions, brought together CAPITAL staff, people with lived experience and colleagues from West Sussex County Council to explore how the project developed, what happened as a result, and what we have learned along the way.
Meet the presenters
The session brought together a range of perspectives from people who had been directly involved in the project:
- Duncan Marshall, CAPITAL’s CEO, introduced the project and its wider context.
- Sara Shepherd, CAPITAL’s Lived Experience Lead, shared how people with lived experience were involved throughout the project and the different ways they contributed.
- Tracey Horne, a lived experience representative and member of the project’s oversight group, spoke about her involvement in shaping and delivering the work, including co-producing the trauma-informed training, supporting events and sharing her experiences of recovery through poetry.
- Jenny Robinson, a lived experience representative, shared her experience of the four community events and the role of creativity, connection and lived experience in bringing people together.
- Dan Barrett, Public Health Lead for Substance Use and Partnership Lead for the West Sussex Drug and Alcohol Partnership, provided the strategic and commissioning perspective, including the development of the trauma-informed training.
- Rob Whitehead, Principal Research Officer in West Sussex County Council’s Public Health Unit, discussed the evaluation and learning from the programme.
Together, these perspectives helped demonstrate that co-production is not a single activity or a particular stage of a project. It can shape how a programme is designed, how funding is distributed, how decisions are made and how learning is captured.
From insight to action
The work began in 2024, following insight work with people with lived experience of drug and alcohol use and people experiencing temporary accommodation. This work highlighted the need for more meaningful involvement of lived experience in shaping services and decisions.
The project provided an opportunity to take those recommendations and turn them into practical action.
Together, we established an oversight group involving people with lived experience, commissioners and CAPITAL staff; created a community fund to support locally-led solutions; held four community events; and worked alongside Alcohol Change UK to co-design trauma-informed training for professionals.
Across the project, we engaged with people with lived experience, carers, family members, professionals and community organisations, creating opportunities for people to contribute not only their experiences, but their ideas, expertise and solutions.
As Duncan and Rob explain in the Q&A, the project also presented an opportunity to try something different. There was relatively little existing evidence about how to co-produce an entire programme made up of multiple community projects, rather than applying co-production to one individual service or initiative.
As Rob reflects:
“We couldn’t find other examples of going out and letting a community organisation run the actual bidding and grant funding of the process.”
This meant taking a different approach to funding and decision-making, while making evaluation a central part of the work from the beginning.
Putting lived experience at the heart of the work
A key part of the project was ensuring that people with lived experience were involved throughout, rather than brought in at the end to comment on something that had already been designed.
People with lived experience contributed to the oversight group, helped shape events and training, supported focus groups, shared their experiences and creative work, and helped inform decisions about the community fund.
The project supported eight community projects, covering areas including peer support, creativity, wellbeing, recovery, healthy alternatives and support for people affected by substance use.
The trauma-informed training also placed lived experience at its centre. People with lived experience helped shape the training and co-delivered sessions alongside Alcohol Change UK, sharing experiences of trauma, substance use, stigma and the interactions with professionals that had either helped or caused harm.
This approach reflects something fundamental to CAPITAL’s work: lived experience is expertise.
Beyond consultation
One of the themes that came through particularly strongly during the Q&A was the need to distinguish genuine co-production from tokenistic involvement.
As Dan explains:
“Inviting someone with lived experience to look at a strategy or to attend a meeting, you know, isn’t co-production.”
For us, co-production means creating genuine opportunities for people to influence what happens, sharing power and recognising the expertise that people bring through their own experiences.
It also means being willing to question existing ways of working.
The project was designed not simply to deliver a collection of activities, but to learn whether a different approach to commissioning, funding and community involvement could create something that could be sustained and replicated.
As Dan says:
“We really want to shine a light on that, describe and reflect on and share our experience of what co-production looks like and feels like.”
What happens next?
The project has generated a wealth of learning about lived experience involvement, community-led funding and co-production.
We are continuing to build on that learning, including through the forthcoming multimedia presentation exploring the wider project and its impact. We hope that sharing our experience can contribute to wider conversations about how organisations, commissioners and communities can work differently together.
A huge thank you to Tracey Horne and Jenny Robinson, who shared their experiences and expertise as part of the presentation, and to Dan Barrett and Rob Whitehead from West Sussex County Council, who joined us to reflect on the partnership and the learning from the project.
Most importantly, thank you to everyone with lived experience who contributed to this work. Your insights, ideas, creativity and expertise have shaped the project from the beginning.
Watch the presentation + Q&A
We have split the session into three videos:
Video 1: The full presentation
An overview of the project, the approach we took and what we learned.
Video 2: Q&A ‘How to support people in Co-production?’
A deeper conversation about how the programme developed, why we chose a different approach and the importance of building an evidence base.
Video 3: Q&A ‘How to ensure Co-production is embedded and sustainable?’
Further discussion about sustainability, community-led funding and the difference between meaningful co-production and tokenistic involvement.
We hope you enjoy watching and that the learning sparks further conversations about what meaningful co-production can look like in practice.