Lived Experience Is Work. We Should Start Treating It That Way

Over the last decade, I have participated in numerous research studies, advisory panels, consultation exercises, and lived experience initiatives. In almost every case, compensation has arrived in one of two forms: an Amazon voucher or a bank transfer.

Neither method is inherently problematic.

What is striking is how long these payments often take to arrive.

Several months is common. In some cases, considerably longer. At the time of writing, I am still awaiting payment for one project more than eighteen months after my contribution. A separate focus group initiative, to which I contributed over a period of months, has yet to compensate participants.

The issue is not primarily the amount of money involved.

Rather, it is what these arrangements communicate.

Researchers, charities, and public bodies increasingly emphasise the importance of lived experience involvement. Co-production has become a familiar term in grant applications, ethics submissions, and project documentation. Yet the practical treatment of lived experience contributors often tells a different story.

In my experience, lived experience involvement is frequently treated as something that sits outside the normal structures of work and employment.

I was reminded of this recently while reviewing a research proposal. The application contained detailed staffing costs running into the hundreds of thousands of pounds, alongside assurances that lived experience involvement would remain a relatively modest component of the budget.

Nothing about this was unusual.

What struck me was the implicit distinction between "staff" and "lived experience contributors."

The latter group attends meetings, reviews documents, provides feedback, influences study design, and contributes specialist knowledge that researchers themselves do not possess. Their activities have many of the characteristics we would normally associate with professional work.

Yet they are rarely discussed as colleagues.

Instead, they often occupy a curious position somewhere between volunteer, consultant, and symbolic stakeholder.

This distinction matters because language shapes expectations.

If lived experience contributors are viewed as peripheral to a project, delays in payment become easier to tolerate. Administrative difficulties become easier to excuse. Following up on compensation becomes something contributors must chase rather than something organisations actively manage.

Over time, this has diminished my enthusiasm for both research participation and lived experience involvement.

I have repeatedly encountered situations in which researchers enthusiastically discuss co-production during project development but become difficult to reach once contributions have been obtained. Requests for updates, publications, or information about study outcomes often go unanswered.

I do not assume bad intentions.

Most researchers are overworked, under pressure, and balancing multiple responsibilities. Yet the cumulative effect is difficult to ignore.

Lived experience contributors are often highly visible during the funding and design stages of a project and far less visible afterwards.

This raises a broader question.

What would it look like to treat lived experience contributors as genuine colleagues?

In a recent review, I encouraged a research team to think of lived experience advisors not as a group assembled for a specific task, but as long-term collaborators. The funding body responded positively to that suggestion. Whether it ultimately influenced the project, I do not know.

What I do know is that many current arrangements feel transactional.

Contributors are invited into projects for a meeting, a panel, or a consultation exercise. Afterwards, compensation is routed through administrative systems that often appear unprepared for the realities of paying people promptly and consistently.

The result is a paradox.

Organisations increasingly acknowledge that lived experience expertise is valuable. Yet the structures surrounding compensation often imply the opposite.

For that reason, I have gradually stepped away from much of this work.

The issue is not simply money. It is recognition.

If lived experience genuinely improves research, then the people providing that expertise should be treated accordingly. They should be compensated promptly, included meaningfully, and regarded as contributors rather than accessories to the research process.

Lived experience involvement is often described as a moral good.

I would argue that it is something much more practical than that.

It is work.

And we should start treating it like work.