This year’s World Mental Health Day theme is Lived Experiences Heard: Real Voices, Real Change. It asks us to think about whose voices we listen to when we talk about mental health, and how much influence those voices actually have.
When we think about mental health services, research or workplace policies, how often are people with lived experience involved in shaping them? Do we see them mainly as people who need support, or also as people who know something valuable about what that support should look like?
For example, there are aspects of living with depression, anxiety, trauma or other mental health difficulties that can’t be fully understood from a textbook or training course.
Someone who’s tried to get help knows what it feels like to make the first phone call, sit in a waiting room, and explain their experience to a stranger. The valuable insights from those experiences can help to shape the support and services people actually need.
A 2023 study found that when people with lived experience were involved in developing and delivering mental health services, those services were linked with better access to treatment and greater satisfaction among the people using them. The benefits also seemed stronger when people had a genuine role in shaping services, rather than simply being asked for their views after the fact.
Another study published that year found that involving people with lived experience in mental health research helped researchers ask more useful questions, communicate more clearly and produce work that was more relevant to the people they were trying to understand.
“…having some influence while decisions are still being made can make a bigger difference still…”
If we’re trying to understand what helps people, what gets in the way of seeking support, or why a particular service isn’t working, it makes sense to speak with people who’ve actually encountered those problems.
People with their own experience of mental health difficulties are increasingly working as peer workers too, using some of their experience in supporting others. Research has linked their involvement with greater satisfaction, autonomy and self-determination among people using mental health services.
That said, one large review found that peer workers were overwhelmingly involved in delivering services rather than helping to design them. Being invited to participate is useful but having some influence while decisions are still being made can make a bigger difference still.
To help us get a sense of the importance of including people with lived experience in decision-making, we can reflect on the following questions:
- If a mental health service is difficult to access, who’s most likely to notice the reasons why?
- If employees are reluctant to use a workplace mental health policy, who might help explain what’s getting in the way?
- If we’re deciding what “getting better” looks like, whose definition are we using?
A 2025 study looked at mental health measures developed with people who had lived experience themselves and found that their involvement helped researchers focus on changes that people actually considered relevant and meaningful. Fewer symptoms might be part of recovery, but so might returning to work, reconnecting with someone, sleeping better, leaving the house more easily, or feeling more able to manage everyday life.
It’s also important to remember that people with the same diagnosis might view their experience very differently. They might want different kinds of help, have very different encounters with services and disagree about what needs to change.
No one person can speak for everyone, and lived experience doesn’t replace clinical knowledge, research evidence or wider social and cultural understanding, but it adds something those perspectives can’t provide on their own: what mental health difficulties and mental health care actually feel like from the inside.
A workplace developing a mental health policy could speak with employees who’ve tried to seek support at work. An organisation creating an awareness campaign could involve the people it hopes to reach. A mental health service could bring service users into the conversation before plans are finalised, while there’s still room for their experience to influence the decisions being made.
People with lived experience have been asked to tell their stories for a long time, but we should also be mindful about what we do with those stories once they’ve been heard. Do they become “tick-box” exercises or do we make them an active part of creating the kinds of services and support we want to build?
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