I Was Told Lived Experience Wasn't Enough

I have a long history with lived experience involvement, which began in 2014.

I was recovering from my first psychotic episode and wanted to use the experience to do some good. My first attempt was to contact TEDx Exeter and offer to give a talk. The reply informed me that TED talks were generally for people who had "achieved something". Today, lived experience talks are commonplace at TEDx events. At the time, however, there was little interest.

Undeterred, I contacted a nearby university's mental health nursing department to ask whether they had opportunities for lived experience speakers. This led to a meeting with a senior lecturer, who introduced me to a community interest company that supplied speakers for nursing education. Through them, I delivered talks to second-year mental health nursing students.

I later found work as a healthcare assistant on an acute psychiatric ward, where I remained for two years. During that time, I also trained as a control and restraint tutor, teaching physical intervention techniques to staff. My growing interest in de-escalation and ward culture eventually led to a conversation with the medical director.

Her advice was simple: lived experience alone would have limited influence within the NHS. If I wanted my ideas to carry weight, I needed credentials.

So I left and began a PhD.

Before doing so, I attended a staff training event that featured recently discharged patients as lived experience speakers. The experience left a lasting impression. The speakers were physically positioned at the centre of a large conference hall and heavily outnumbered by clinical staff. Their suggestions were repeatedly dismissed as unrealistic or impractical. Frustration became increasingly visible, and one participant appeared visibly distressed by the experience.

It was my first encounter with what I would later come to recognise as a recurring problem: people with lived experience were invited into the room, but not necessarily listened to.

A decade later, I had completed my thesis and established myself as a researcher. I had published work, delivered training to psychiatrists and mental health professionals, and begun contributing to academic discussions about schizophrenia and thought disorder.

For the first time, I felt I had escaped the category of "person with lived experience". I was now participating as a researcher.

Or so I thought.

Shortly after completing my PhD, I was invited to an academic conference in Italy focused on thought disorder, the subject of my thesis. I assumed the invitation reflected interest in my research. When I arrived, I was asked whether I could give a brief talk about my experience of psychosis.

Moments before taking the stage, I realised that I had been invited not primarily because of the work I had spent seven years producing, but because I had experienced psychosis many years earlier.

I gave the research presentation I had prepared.

A similar pattern emerged elsewhere.

I joined a multi-year study on thought disorder, assuming I had been recruited as a researcher. Instead, my role centred on providing lived experience input. I remain involved with the project today. While I value the opportunity, I often find myself occupying a curious position: invited into discussions because of my personal experience, while my methodological and theoretical expertise remains largely peripheral.

The same dynamic appeared in another project examining social cognition. I was asked to provide lived experience feedback on a design that used AI-generated images of social situations. My concerns were less about lived experience and more about methodology. Social cognition does not occur in a vacuum; it emerges through interaction. Yet the role I had been assigned was not to critique the research design as a researcher, but to comment on it as someone with lived experience.

Over time, I began to notice a pattern.

The more lived experience became valued within mental health research, the more it seemed to function as a category separate from expertise. Researchers were researchers. People with lived experience were people with lived experience. Individuals who happened to be both were often treated primarily as the latter.

This is not true everywhere.

I currently sit on Bipolar UK's Lived Experience Advisory Panel, which consists largely of individuals with both lived experience and research training. Discussions there are thoughtful and substantive. One outcome of the group's work was a toolkit designed to assess the impact of lived experience involvement itself.

I have also participated in advisory work for Rethink Mental Illness. Some of those experiences, however, reinforced my concerns. In one project, panel members were asked to advise on a public awareness campaign whose core concepts had already been developed. Consultation appeared to occur largely after the important decisions had been made.

This is not uncommon.

Increasingly, I have the impression that organisations are more interested in demonstrating that people with lived experience were consulted than in genuinely sharing power with them. Consultation can become a box-ticking exercise rather than a meaningful collaboration.

That is unfortunate, because meaningful involvement is possible.

In my own PhD, people with lived experience contributed over a period of months. Their feedback directly influenced participant information sheets, consent procedures, research questions, and aspects of study design. Our correspondence was submitted to the ethics committee as part of the approval process, years before such involvement became an expectation.

At the time, I assumed this was normal.

I now suspect it was the exception.

Looking back over the last decade, I am struck by a peculiar irony. When I first wanted to contribute as someone with lived experience, few people were interested. I was encouraged to obtain credentials. By the time I had done so, lived experience had become highly valued, but often in ways that left little room for the expertise I had spent years developing.

The lesson I have taken from this is not that lived experience involvement is unimportant. Quite the opposite.

The challenge is ensuring that involvement means more than presence. Inviting people into the room is easy. Listening to them, sharing authority with them, and recognising the full range of expertise they bring is considerably harder.