‘Nothing about us without us’ – addressing tokenism, conflict and exploitative practice in work with experts by experience

For anyone commissioning or running work with experts by experience.

I recently heard a young adult involved in service design describe what it felt like to be brought into consultation meetings with senior leaders: she called it being asked to ‘put on the show’.

She was referring to the familiar request to share personal stories on demand: talk about the impact of the hardship she had faced, recount private struggles to a room of professionals, or provide emotional resonance for decision-makers.

Involving the people closest to a social issue in designing, delivering, and evaluating services – often described as ‘co-production’ (collaborating as equals with service users) or working with ‘experts by experience’ (people whose authority comes from having lived through the challenge) – is now fairly standard across social services, public bodies, and charities. When done well, it shifts institutional power and leads to services that make a real difference.

And yet, after twenty years in participatory work, I see the same systemic pitfalls recurring. Co-production fails in five predictable ways - here they are, with counter measures you can actually implement.