Psychosis patients’ voices are lost in research papers and at conferences, so I’m telling their stories

I’m a mental health pharmacist and I recently finished a two-year masters degree in clinical research in patients’ experiences of psychosis. It was one of the most challenging and rewarding things I have undertaken to date: from obtaining ethics approval, to data analysis, to the arduous write-up and viva that followed.

Now, another challenge follows: disseminating the findings. The results of the study are poignant and meaningful, and people who have heard me present them have been very moved by them. The narratives of the people that I interviewed really matter and it makes a difference to hear them.

Usually, researchers disseminate their findings at conferences and through a publication. The findings may reach a few thousand people and will perhaps inspire a handful to action. Research papers and speaking at conferences are important, but patients’ voices, and those parts of life that don’t fit neatly into a traditional report, are lost^{[1]
,[2]
,[3]
,[4]
,[5]}
. I feel a responsibility and ethical obligation to make sure I do justice, and be a spokesperson, for those who shared with me their journey of psychosis and medication.

Theory and research findings are largely unintelligible to audiences untrained within the disciplines^[6]
. While the complex, technical language of healthcare and academia has its place, it is important that we recognise that it can be inaccessible, impenetrable or intimidating to those outside^[5]
. It can exclude many people in society from engaging with its content, and can exclude the people our NHS exists to serve: our patients, their carers, and their community.

Alternative, more accessible forms of communication are needed; not to replace existing forms of communication in healthcare, but to augment the currently limited reservoir of approaches^[5]
.

This is why I am taking my research not only to the page, but also to the stage. I am using my craft as a professional storyteller to share my research findings. I will be telling people’s real life stories of mental health: their experience of stigma and their journey with antipsychotic medication weaved into a wonder tale. These are stories of overcoming obstacles, and are full of depth and wisdom, yet such performances are rare.

This is a lesser-known way of disseminating research findings — and I am lucky to be part of a team who are supportive because isn’t this the way innovation occurs?

The hardest part of this project is obtaining funding, and I am currently crowdfunding in order to make it a reality. If you are able to, do contribute at: https://www.crowdfunder.co.uk/mental-health-storytelling-project

Nana Tomova, lead pharmacist in mental health, Sussex Partnership NHS Foundation Trust; visiting lecturer, University of Brighton