Embedding Lived Experience in Governance: Beyond Advisory Groups

Most organisations in mental health now accept that lived and living experience belongs in governance. The advisory group has become the standard way of acting on that belief. A group is convened, members are recruited, terms of reference are written, and the organisation can say, accurately, that lived and living experience has a place in how it is governed.

This is genuine progress, and it should be recognised as such. Many advisory groups have driven real change. Many are made up of committed people doing demanding work, often for years, often while carrying the very experiences the system is asking them to draw on. The argument here is not that advisory groups are tokenistic or that they should be dismantled. It is narrower and more useful than that. It is about what organisations expect the advisory group to do, and the quiet assumption that once one exists, lived experience has been embedded.

That assumption is where the work usually stops too early. An advisory group is often the beginning of embedding lived experience in governance, not the completion of it. The question that matters is not whether lived experience is present. It is whether lived experience reaches the places where authority actually sits.

Presence is not influence

Organisations are good at measuring presence. They can report how many lived and living experience members sit on their groups, how often those groups meet, how many people were consulted, how representative the membership is. These measures are not meaningless. They describe a real form of inclusion, and a decade ago many of them would not have existed at all.

What these measures do not capture is influence. A person can attend every meeting, read every paper, and speak in every discussion, and still have little bearing on what the organisation decides. Presence is countable. Influence is not, which is part of why organisations drift toward measuring the first and assuming it stands in for the second.

The harder measures are the ones that describe whether anything actually shifted: whether advice changed a decision, whether lived experience priorities moved resources, whether the people contributing held any authority over outcomes, and whether the organisation could be held to account for what it did with what it heard. An advisory group can score well on presence and poorly on every one of these, and when it does, the people in it tend to know long before the organisation does.

Where governance actually sits

Part of the difficulty is that governance is easy to picture as a set of committees, and committees are where advisory groups are placed. But governance is not the committee structure. Governance is wherever decisions are actually made about priorities, resources, risk, accountability, and strategy. Some of that happens in formal meetings. A great deal of it happens in budget processes, in executive discussions, in the framing of a paper before it ever reaches a committee, and in the countless small decisions that set the options before anyone votes on them.

The useful question, then, is not whether lived experience has a seat on a governance body. It is where lived experience sits in relation to those decisions. An advisory group that reports into a committee, which notes its advice, which passes a recommendation to an executive, which weighs it against other priorities behind closed doors, is several steps removed from the point where authority is exercised. The advice can be sincere, the group well run, the members respected, and the distance between their contribution and the decision can still be large enough that influence drains away in transit.

Embedding lived experience in governance means shortening that distance. It means asking where the real decisions are made and whether lived and living experience is anywhere near them, rather than whether a group exists somewhere in the structure.

Four questions worth asking

Rather than a checklist of features a governance structure should have, it is more honest to ask a few diagnostic questions, because the same structure can work in one organisation and fail in another depending on the answers.

Is lived experience involved early enough? Influence is highest while a problem is still being defined and lowest once a direction has been set. If lived and living experience enters after the priorities, the budget, and the framing are settled, the contribution is confined to refining decisions that have already been made. Early involvement is not a courtesy. It is the difference between shaping a decision and reacting to one.

Is lived experience connected to decision-making, or only to a reporting line? Advice that travels up through layers, summarised at each step, often arrives at the decision point thinned out or detached from the reasoning that gave it force. It is worth tracing, concretely, what happens to lived experience input between the room where it is offered and the room where the decision is made. If the honest answer is that it enters a reporting pathway and is not seen again, the structure is producing the appearance of influence without its substance.

Is authority matched by resources? Organisations frequently ask lived and living experience members to carry responsibility without the things that make responsibility sustainable: fair remuneration, preparation time, access to information, administrative support, and supervision or debriefing for work that can be personally costly. Authority without resourcing tends to fall hardest on the people least able to absorb the cost.

Who is accountable for the response? When lived experience recommendations are not adopted, is that decision explained, or does it simply disappear? Accountability does not require an organisation to act on everything it hears. It requires the organisation to show how it reached its decision and how the contribution was weighed. Without that, members are left to guess whether their work mattered, and the reasonable conclusion, over time, is that it did not.

Governance reaches some communities and not others

A governance structure can look inclusive on paper and still exclude, systematically, the communities least able to enter it. This is where embedding lived experience becomes inseparable from cultural responsiveness, because governance is precisely the level at which multicultural communities are least present and hardest to reach.

The reasons compound. Formal governance tends to run on a particular kind of fluency: the language of papers and agendas, the conventions of committees, an assumption that participants are comfortable challenging authority in a room of strangers. For someone navigating a second language, an unfamiliar system, or a justified wariness of institutions that have not always been safe, these are not neutral conditions. Recruitment that relies on existing networks reaches the people already close to the system and misses those furthest from it. And when one person from a multicultural background is brought onto a body, their presence is too easily treated as covering an entire field of experience, as if a single contributor could speak for the differences of language, faith, generation, and migration pathway that the word "multicultural" holds together.

A structure that does not account for this will keep producing governance that is inclusive in form and narrow in fact. Reaching further is slower and more demanding work: building relationships before they are needed, resourcing participation properly, and accepting that the communities hardest to reach are often the ones whose absence from governance does the most damage.

Beyond consultation

It helps to think of lived experience in governance as a sequence of increasing proximity to authority, rather than as a single state an organisation either has or lacks.

Consultation is the first step. The organisation asks, listens, and retains every decision. Participation goes further: lived and living experience is in the room while decisions are discussed, though authority still rests elsewhere. Partnership is further again, with shared influence over at least some decisions and some genuine negotiation over outcomes. Leadership is the point at which lived and living experience holds authority in its own right, setting direction and making decisions rather than informing those made by others.

These are not rungs to be climbed for their own sake, and not every decision calls for the same level. The value of the sequence is diagnostic. It lets an organisation locate, honestly, where its practice actually sits, and notice the common mistake of describing as partnership or leadership what is, on inspection, still consultation with better manners. Most organisations sit closer to the consultation end than their language suggests. Naming that accurately is the first move toward changing it.

The question beneath governance

Many organisations ask how to bring lived experience into governance. The more revealing question is whether their governance is prepared to change because lived experience is present. The first question can be answered by creating a group. The second can only be answered by what the organisation does when lived and living experience points somewhere the organisation had not planned to go.

The future of lived experience leadership will not be settled by how many seats are created around the table. It will be settled by whether those seats change what happens when decisions are made. A seat that cannot change a decision is a courtesy. A seat that can is governance.

If your organisation is working through these questions, whether you are reviewing how lived and living experience sits within your governance, designing a new structure, or trying to move from consultation toward genuine authority, LEXs can help you understand what is actually happening and what it would take to change it. You can read more on the LEXs consultancy page, and you may find the related article Why Co-Design Fails in Mental Health a useful companion, since the same question of influence runs through both. For organisations building capability more broadly, LEXs training covers lived and living experience leadership, governance, and workforce development.