The theme of this year’s World Mental Health Day is “Lived experiences heard: real voices, real change”. It challenges health and care systems to go beyond just giving people the chance to speak. The more important question is: are people genuinely being heard, does their insight influence decisions, and can they see how their contribution has shaped what happens next?
That question matters even more as organisations move towards neighbourhood and place-based models of care. These models aim to bring support closer to home, strengthen prevention and organise services around people and communities rather than institutional boundaries. In our neighbourhood health work, we describe this as a shift away from fragmented, reactive systems towards coordinated approaches rooted in local need.
Lived experience belongs in the evidence base
People who live with mental health conditions, and their families, carers and wider support networks, see the system in a way that professional insight and performance indicators cannot fully capture.
They experience what happens between formal service contacts and across organisational boundaries. They know how it feels to repeat their story again and again, navigate thresholds, wait for support or move between mental health, primary care, social care, community and local authority services. They can see where technically sound pathways become hard to use in practice, and, ultimately, are the ones who live with the consequences when a service model or pathway changes.
That is why lived experience should sit alongside population health data, clinical insight, operational information and formal research as a core part of the evidence base for mental health services. Data can show where demand, waits or variation occur, while lived experience can help explain how the pathway is experienced between those points, where barriers arise and what they mean for the people navigating them.
It is also why the aim should not be a single, representative “service-user view”. Experiences differ between people, localities and providers. These differences are valuable, because they can highlight where a model may need to be more flexible, more targeted or tested further.
From consultation to co-production
Too often, people with lived experience are invited in after the main questions have been asked and answered, and the options have already been narrowed down.
Meaningful involvement has to come earlier. People with lived experience can help organisations to:
- Frame: Define the problem and identify what matters most
- Interpret: Understand what the data shows, and what it cannot
- Design: Co-design pathways and shape future service models
- Test: Challenge assumptions and identify unintended consequences
- Improve: Define success and assess the real impact on people who use mental health services
In other words, lived experience belongs in interpretation and redesign, not in a separate consultation exercise.
Why place matters
Neighbourhood models offer a real chance to do things differently. Community groups, peer networks, charities and local organisations often hold relationships and insight that statutory services do not. At our recent roundtable, attendees highlighted that these community assets bring the trust, context and relationships needed to support whole-person health and wellbeing.
Working through established community routes can also help systems hear from people who may not participate in formal panels or public consultations. This matters most for people who face additional barriers, have needs that span several services, or repeatedly fall below individual service thresholds.
What does meaningful involvement look like?
For transformation leaders, five principles stand out:
- Involve people early: Lived experience should help frame the questions, not just comment on the proposed answers
- Reach beyond the usual voices: Work with trusted community partners who actively seek out perspectives that are less often represented
- Remove barriers to participation: Use accessible, flexible methods, and recognise people’s time and contribution appropriately
- Create forums for influence, not just attendance: Give people with lived experience meaningful roles in governance, design and decision-making, and ensure they are able to see which decisions changed as a result of their involvement
- Close the feedback loop: Transparency builds trust, so explain what was heard, what changed and where a different decision was made
Designing with people and place
Moving services into a shared space will not, on its own, create a joined-up experience. It will succeed when mental health support is integrated, accessible and relevant to the people it is meant to serve. That means combining traditional evidence bases with real human experience, and treating local people as partners in change rather than recipients of it.
This World Mental Health Day carries a simple message: hearing people matters, but real change begins when their voices shape what happens next.
You can also read more of our thoughts in our report: Akeso Beyond Neighbourhood Health White Paper.
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