Rosie Phillips, CEO of Developing Health & Independence, challenges charities to move beyond symbolic involvement by creating cultures that trust, empower and learn from people with lived experience.
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The story of Jeremy Palmer, a former client of Developing Health & Independence (DHI), the social inclusion charity I lead, recently went viral on social media. Jeremy is now our Supported Housing Team Leader, running the service he once relied on. His office is in the same room where he once detoxed from drugs and alcohol.

The story resonated with so many because it shows that change is possible and because of its powerful twist: someone once supported by our service is now leading it. It is one of our clearest examples of how DHI embeds lived experience in leadership – but it is far from the only one.

Across the sector, ‘lived experience’ has become a familiar term. It appears in strategies, funding bids and conference panels. Yet too often it is symbolic. People are invited to share their stories, but rarely empowered to shape decisions or influence where power sits.

Moving beyond tokenism requires resources, transparency, trust and a willingness to tolerate some risk. Crucially, it must be driven from the very top of an organisation. Without visible leadership commitment, lived experience becomes an add-on rather than a core principle for decision-making and shared responsibility.

I do not have lived experience of the services DHI provides. That reality has shaped my approach. Rather than trying to speak for people, I have been intentional about ensuring lived experience sits around me – and above me – through governance, leadership and organisational culture.

Lived experience is perhaps in DHI’s DNA. Our organisational roots lie in Bath Self-Help housing association, which was founded on the principles of mutual aid and collective action. Bath Self-Help originally took over a row of empty properties in Bath, and worked alongside squatters to renovate the houses, who then went on to become tenants. The model was grounded in the direct experience of people excluded from conventional housing systems.

At DHI, our values explicitly support meaningful involvement from people with lived experience: Self Direction, Zest for Life and Stimulation. These are not aspirational words on a wall; they influence how we lead, design and think about our work.

For me, Stimulation is especially relevant. Fundamentally, it is about learning. Learning requires challenge, reflection – and sometimes mistakes. We are told we learn from failure, yet in the public and charity sectors there is little tolerance for it.

A key step in moving beyond tokenism is therefore cultural. Rather than removing all risk from lived experience involvement, we need environments where mistakes are accepted and learning is expected. This starts with clear expectations and boundaries, but once these are in place, organisations must trust people to take ownership. This is not an argument for recklessness. Safeguarding remains essential, but it should enable participation, not shut it down. When fear of risk dominates, it reinforces the power imbalances we claim to challenge.

I recently sat down with our Peers – service users with lived experience who are trained and supported to help our clients – to ask what works. Trust, training and DHI’s non-hierarchical culture were key.

“For example, we know weekends can be trigger points for relapse, so we were empowered to set up a Prep for the Weekend group which runs every Friday,” said one Peer.

“Whenever we face problems helping clients, we know there’s a support structure to rely on,” said another.

Responding to feedback creates a virtuous circle of trust, building confidence among service users and helping us improve services informed by lived experience.

Lived experience is represented on our board – but we don’t rely on these trustees to speak for all service users; instead, assurance that we have listened widely, especially to the quieter or harder to reach service users, comes through our User Voices group, which is open to all service users and peers and reports directly to the Board. Its purpose is to hear the widest possible range of experiences and ensure that insight shapes service development and decision-making.

None of this has happened by accident. We have invested in lived experience leadership for years, supported by trust funders and increasingly by embedding meaningful peer involvement into service tenders.

This investment reflects a belief that lived experience is not an optional extra or a reputational asset. When embedded properly – with clarity, trust and space for learning – it strengthens accountability, improves outcomes and makes charities better at the services they exist to provide.

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