Lived experience is everywhere in mental health policy, services and research — at least in theory. We talk about “co-production”, “experts by experience” and cite “nothing about us without us”. Yet for many people with lived experience, involvement still feels symbolic rather than meaningful. Too often, we are invited into rooms but not into decision-making spaces, asked to share our stories but not paid for our time, or solely valued for our insight when it aligns neatly with existing agendas.
This is not accidental. Tokenism is built into systems that want the appearance of inclusion without the disruption that genuine power-sharing brings.
Tokenistic involvement often looks like one-off consultations, unpaid advisory roles, or invitations that arrive too late to influence outcomes. People with lived experience are expected to be grateful for the opportunity, even when participation costs them emotionally, practically or financially. Meanwhile, so-called “professionals” (those working within the systems) doing similar work but often without lived experience are paid, protected and respected.
Fair pay is not just about money. It is about recognition, dignity and equality. When lived experience is unpaid or underpaid, it sends a clear message: your insight is optional, not essential.
For many people with experiences of mental ill-health, financial insecurity is already a reality. Rates of unemployment, underemployment and poverty are significantly higher among people who have experienced mental distress. Asking people to contribute their expertise without pay actively excludes those who cannot afford to volunteer, reinforcing the same inequalities involvement is supposed to challenge.
There is also an emotional cost involved in lived experience work that is rarely acknowledged. Sharing lived experience is not a neutral act. It can involve revisiting trauma, navigating stigma, and exposing deeply personal parts of one’s life to scrutiny. This labour is real work and deserves to be treated as such.
Some organisations argue that budgets are too tight, or that paying lived experience contributors risks “professionalising” them. But this misunderstands the issue. Fair pay does not erase lived experience — it respects it. If an organisation cannot afford to pay people for their expertise, it raises serious questions about how much that expertise is truly valued.
Moving from tokenism to fair pay requires more than good intentions. It requires structural change. This includes budgeting for lived experience involvement from the outset, offering clear payment rates, covering expenses promptly, and being transparent about decision-making power.
The mental health sector has made progress in recognising the importance of lived experience, but recognition without redistribution is not enough. Until lived experience is treated as essential expertise — and paid accordingly — involvement will continue to fall short of its promise.
If we are serious about transforming mental health systems, we must move beyond token gestures and towards genuine partnership. Fair pay is not the end goal, but it is a necessary place to start.