Reflections on Lived Experience Inclusion

Written by Bella Kotlar

When we talk about lived experience, we often hear organisations say, “We have a lived experience representative,” or “We consulted someone with lived experience.” But I’d like to challenge us to ask a different question: Were they truly a partner, or were they simply present?

There is a very important point to distinguish and that is the difference between tokenism and meaningful partnership.

Tokenism is inviting someone with lived experience to the table after the decisions are made. It is liking the idea of lived experience and a story at the table, without valuing and recognising the expertise that comes from lived experience and how it can be valuable in helping change and strengthen systems.

Meaningful partnership looks far different. It is involving lived experience views and voices from the beginning, not just at the end after decisions are made. The decisions are not just presented for validation after the fact, the decision making power is shared with lived experience individuals to help shape these final decisions. Partnership is about listening with intent and recognising lived experience as a form of expertise that sits alongside clinical, academic, and professional knowledge. It is about integration, not addition. Partnership involves building strong foundations and trust from the beginning of a project, involving lived experience in governance and leadership and valuing the feedback given.

Many articles, journals, research and widely available frameworks highlight the importance of partnership over tokenism and shows the impact and strength to systems as a result. As stated in the Lived Experience Governance Framework:

'Systems are strengthened when discrimination and tokenism are minimised and where peoples’ dignity is prioritised'.

When lived experience is genuinely embedded through partnership, organisations make better decisions, and even often see benefits. Services are more responsive and relevant, policies become more practical, and the people those services are designed for are more likely to engage with them because they reflect real-world needs.

I leave you with this thought:

The goal isn’t to have a seat at the table simply so lived experience can be seen and stories can be told. The goal is to ensure that when people with lived experience are at the table, their perspectives genuinely influence what is built, including the future of mental health services based on the expertise they have. Through genuine partnership over tokenism, and shared valued decision making, we can together move closer to solutions and organisations that meet the needs of the people they are designed to support.