While members of the Lived Experience Advisory Panel brought a great deal of knowledge and insight to bear on this project, possessing detailed technical expertise wasn’t necessary to participate. Facilitated by the team at McPin, who helped to foster an inclusive environment and ensure that all voices were heard, we were able to draw on our experiences in a variety of ways.

One of our most important roles was to emphasise and explain the individual life stories that can sometimes be obscured by clinical language. Humanising the language of mental health has never been more important – particularly when loaded and evocative terms like “psychotic experience” are in play – and we were able to hold focus on why research into this area is ultimately so significant. Uncovering knowledge may be valuable for its own sake, but it is also key to remember the unique life stories and experiences that lay behind charts and data sets.

This was where our position as Experts by Experience came in. With a nuanced understanding of mental health services ‘from the inside’, we could speak to the subjective experience of navigating these environments: including the challenges that are all too easy to overlook from a purely clinical or academic standpoint. This different form of knowledge can prove invaluable in a research context, particularly as regards communicating a study’s premises and findings publicly.

The TYPPEX study looks to have broken new ground in exploring mental health experiences that were historically overlooked. While exciting, that kind of innovation comes with its own conceptual challenges. Responding to this, we aided the study team in attempting to convey what these experiences are like for the people living them, while keeping in mind the sheer breadth and variety of interpretations, viewpoints and desired responses involved. With any luck, this kind of collaboration will become the norm in future mental health research – showing that co-production of academic work, policy and public communication materials is not just desirable, but often essential.

Driving change is rarely easy, but by combining the TYPPEX researchers and clinicians’ forms of expertise on one hand, and ours on the other, we have been able to suggest a potential way forward for comparable projects. But more importantly, we have helped to ensure that what matters most – the lives of people living with these complex experiences, and how they might stand to benefit – is not forgotten.

Text by: Rob Sayce