Who Holds the Pen? Co-design, power, and lived experience leadership in mental health

There is a moment in almost every project that decides whether lived and living experience mattered, and it is easy to miss because nothing dramatic happens. Someone has told their story. Someone has described what a service felt like from the inside, what helped, what harmed, what they wish had been different. The room is moved. Then the meeting ends, and somebody goes away to write it up.

That is the moment. Not the workshop, not the consultation, not the warmth in the room. The moment that matters is when the experience is turned into words on a page, because whoever does that work decides what the experience now means. They choose which parts are signal and which are noise. They choose the framing, the language, the conclusions, the recommendations. They hold the pen.

When the person contributing experience has no route to examine its interpretation, an important part of the process remains out of their reach.

Experience as raw material

We have built a quiet division of labour that almost no one questions. The person with lived and living experience supplies the experience. The professional supplies the analysis. One brings the story; the other brings the interpretation, the structure, the language that will travel into a report or a strategy or a paper, and the authorship that goes with it.

Put like that, it sounds obviously unequal, but in practice it feels natural, even respectful. The contributor is thanked sincerely. The professional genuinely tries to honour what they heard. Everyone behaves well. And still, by the end, the experience has been converted into someone else's knowledge product, and the person it came from has no particular claim over what it became.

This is the engine underneath so much participation that changes nothing. It is possible to consult widely, listen carefully, and represent people faithfully, while never once letting them hold the pen. The contribution is real. The authorship is not shared. And authorship is where the power sits, because the author decides what the experience means once the person who lived it has left the room.

Where the pen changes hands

It is worth noticing how many times, in a single project, authorship quietly transfers from the people with experience to the people with professional standing.

In research, people are interviewed, and then their words are coded, themed, and interpreted by someone else, who writes the findings and is named as the author. In service design, people describe what they need, and a project team translates that into a model, a specification, a set of requirements. In strategy, lived and living experience is gathered through consultation, then synthesised by a writer who decides which themes survive and how they are phrased. In the framing of a problem, often the earliest and most powerful act of authorship, someone decides what the issue even is before anyone with experience is asked anything at all.

At each of these handovers, something is gained, because analysis and synthesis are real skills and not everyone wants to or should have to do them. But something is also lost, and it is the same thing each time: the distance grows between the experience and the words that now represent it, and the person who lived it has less and less say over the gap. By the time the document is signed, the experience has passed through several hands, and none of them were theirs.

These questions also sit close to my doctoral research into lived and living experience leadership. Again and again, the issue is not whether lived and living experience is present. The issue is whether it shapes what is written, decided, funded, and ultimately acted upon.

Translation widens the gap

Culture and language can add further layers of interpretation. That makes it particularly important to check how a contribution is understood and represented.

When someone describes their experience in their second language, or through an interpreter, or in terms shaped by a culture the writer does not share, the act of writing it up is also an act of translation. Their words are rendered into another language, another register, another set of assumptions about what distress is and what help looks like. Each of those moves is a decision, and each decision is made by the person holding the pen, who is usually not from the community whose experience is being translated.

So the experience of a person from a multicultural community can pass through more hands and more conversions than anyone else's before it reaches the page, and arrive most changed. It is easy for a report to describe that contribution as "the multicultural perspective" as though one heavily mediated account could stand for the differences of language, faith, generation, and migration that the word holds together. The further the experience travels from its author, the more it can be made to mean whatever the document needs it to mean. That is not usually anyone's intention. It is simply what happens when authorship is never shared in the first place.

Sharing the pen

If the problem is authorship, then the response is not more consultation. More consultation gathers more raw material for someone else to write up. The response is to share the pen, which is a more demanding and more interesting thing to do.

Sharing the pen means people with lived and living experience are involved in the analysis, not only the input; in deciding what the findings mean, not only in supplying the data; in choosing the framing, not only in responding to one already set. It means co-authorship that is real rather than honorary, where a name on a document reflects authority over its contents. It means staying involved through the stages where authorship is usually quietly taken back: the writing up, the interpretation, the dissemination, the deciding of what the work will say to the world. In the co-creation framework I work from, those later stages, co-evaluation and co-dissemination, are exactly where the pen tends to change hands, and exactly where it most needs to stay shared.

None of this means professionals stop bringing their skills. Analysis, synthesis, and writing are real contributions and they matter. It means the pen is held together rather than handed over, and that the person whose experience is on the page has a say in what it is made to mean.

The question beneath co-design and governance

This is the question that sits underneath the other two. Co-design asks whether people influenced the project. Governance asks whether they influenced the system. Both are really circling the same harder question, the one that is least often asked directly.

When lived and living experience enters the room, who gets to decide what it means?

That question cuts through almost everything else, because you can answer it honestly even when the participation metrics look good and the advisory group is full and the consultation was genuine. If the answer is that other people, however well intentioned, still decide what the experience means and still hold the pen, then lived and living experience has been used as a source and not recognised as an authority. And the move from being a source to being an author is, in the end, what lived experience leadership actually is. Not a seat. Not a title. The pen.

Agree how the account can be questioned

For an organisation commissioning lived experience consultation or review, explain the process for using contributions before collecting them. Who will see the material? How will it inform the report? What opportunity will contributors have to raise a factual error or explain missing context? How will they hear the outcome?

A factual correction, a different experience and a disagreement with an interpretation need different responses. Check the relevant evidence and record the reviewer’s reasoning. Different accounts may reflect different roles, timing or access; neither account should be erased simply to create agreement.

Shared authorship, factual checking and independent review are distinct arrangements. Agree the appropriate one for the work. In an independent review, contributors need a meaningful way to question their representation while the reviewer remains responsible for the analysis. The organisation then decides its response to the recommendations.

Try the process with a short hypothetical example before consultation begins. Can a participant and the review contact both explain how a concern would be raised, examined and answered? Clarify any uncertainty. LEXs can help define these arrangements within a scoped review or a specific consultancy task.

A Lived Experience Workforce Review can examine where authorship, authority and accountability sit, and whether the people contributing lived experience can see what changed.