Highlights from Lived Experience: Real Voices, Real Change Webinar
Young people, parents, researchers and clinicians came together for the King's Maudsley Partnership's Lived Experience: Real Voices, Real Change webinar, held to mark World Mental Health Day.
The event explored how lived experience is increasingly helping to shape children's and young people's mental health research, services and support, with speakers sharing personal reflections and practical examples from across the King's Maudsley Partnership.
Lived experience shaping research
A key theme throughout the webinar was the importance of co-production, which brings together researchers and young people with lived experience to shape research from the earliest stages through to delivery.
The RE-STAR project, led by King's College London, provided a powerful example of co-production in practice. The programme explored ways to reduce the risk of depression among young people with neurodevelopmental conditions, with youth researchers playing an active role in shaping research questions, conducting interviews, analysing findings and sharing results.
Reflecting on his experience as a youth researcher, Maciej Matejko spoke about the personal impact of contributing to a project shaped by co-production.
"I was able to be part of a big project that genuinely embraced the idea of neurodiversity and deeply embedded us in it as co-researchers. This work is really empowering for me, because I can take my difficult and, at the time, confusing experiences and feel like I can actually contribute to making a change and making life a bit better for young people with similar challenges."
Having contributed to RE-STAR as a youth researcher before going on to work in NHS psychiatry, Dr Bee Balwani spoke about the lasting impact of embedding lived experience throughout the research process.
"Being involved in co-production has been a transformative process for both me and the research. Our lived experiences provided the backbone of the project, and all that work was done with us and by us rather than by someone else on our behalf. The beauty of well-conducted co-production is that, as people whose lives are so closely linked with the subject, we carry this work with us beyond a single project."
By bringing together academic expertise and lived experience, the RE-STAR project was able to explore the impact of environmental stressors on adolescents with neurodevelopmental conditions, helping researchers develop a deeper understanding of the challenges young people face both in and outside the school environment.
The discussion demonstrated how co-production can generate new insights while ensuring research remains grounded in the experiences of the people it aims to support.
The role of families in care and support
While lived experience plays an important role in shaping research, speakers also highlighted its influence on care and support, particularly through the perspectives of parents and carers.
Treatment may take place in clinical settings, much of the day-to-day support happens at home, where families help young people put therapeutic strategies into practice, navigate challenges and support their recovery journey.
"With mental health treatment and support, there are two parts: the clinical work carried out by professionals and the work that happens at home, where parents are often heavily involved. This is why it is so important for the parent and carer voice to be heard. We are co-therapists; clinicians are the experts in their field, and we are the experts in our children." - Laurenne Goldston, Parent Peer Support Worker
The Parent Peer Support initiative was highlighted as an example of this approach in practice. Drawing on the experiences of parents and carers, they help inform improvements to communication and support pathways that make services easier for families to understand and navigate, while also reducing isolation during challenging times.
Reflections from the panel
Throughout the webinar, speakers demonstrated how lived experience can shape every stage of mental health research and care, from informing research priorities and study design to improving services and support for families.
Reflecting on the importance of embedding lived experience across research and care, Professor Philip Shaw, Director of the King's Maudsley Partnership, said:
"Everything you've heard today highlights the transformative power of lived experience. When young people, parents and carers are given meaningful opportunities to shape research, services and support, the result is care that is more effective, more compassionate and better able to meet real needs."
One attendee reflected on how the webinar brought the principles of co-production to life through practical examples from a diverse range of voices and experiences.
"Hearing practical examples of how it works in practice, and the impact it can have, from such a diverse range of voices and experiences made it much clearer and more vivid. I was particularly impressed by the younger speakers' openness and confidence in sharing such personal insights and reflections and inspired by their progression into paid roles and career pathways they might not otherwise have considered."
Watch Now
For more information, please contact Seren Bradshaw (Senior Major Gifts Fundraiser- Children and Young People’s Mental Health).