“I could relate to every story we heard”: a personal account of working on My Story, Our Future

An image of a pictures and words cut out from magazines
A collage the research team created during the analysis process

Gary Coyle

The My Story, Our Future project was set up to improve services by encouraging people who use Early Intervention in Psychosis services to talk about their experiences. These included their experiences of mental health and psychiatric services, but also other things in their lives that were important to them. As someone who has used services in the past, I know how important it is for people to feel that the whole of them is being seen. I wanted to be a researcher on the project to enable people to communicate a whole picture of their lives, as they saw it. We did not have expectations about what the project would reveal but we got a sense from each person who took part that they felt their voice needed to be heard.

My Story, Our Future was the first large-scale piece of research I was involved in. A lot of work has gone into this project. It has been an interesting, worthwhile and educational process for me personally. As such, I want to reflect on some of it here.   

Finding the storytellers

During the recruitment process we met with many people – psychiatrists and psychologists, as well as people who ran support groups for service users and carers, the people we intended to interview. Some people we were connected with wanted to know more about the project but did not take up the offer of getting involved. Those who did take part were keen to share parts of their life story, or the story of the person they were supporting.

The research was qualitative rather than quantitative and we conducted the interviews in a deliberately open style. This put the power of which issues were raised in the hands of the person being interviewed. We had no set questions but had created three templates to help people think about what they might like to share with us in advance of the interview. These were the Tree of Life, a timeline and a picture diagram option for people who were more artistic (see the ‘Practical Tools’ in this workbook). We left these tools with potential storytellers at the end of our first meeting and asked them to bring them along when they next came to meet us.

Sense of relief

I got the sense that, generally, the people we met were comfortable sharing their experiences with us. Some said they felt a sense of relief from having shared their story. I think this is partly due to the McPin ethos of including people with personal experience of the topic being researched on any project. This can help put the people being interviewed at ease and reassure them that they won’t be judged for their problems, values or beliefs.

The interviews uncovered some common issues which had (or were still having) an impact on people’s mental health. These included homelessness and insecure housing, the unmanageable pressures of study and work, the frustrations of negotiating services (both mental health services and the police, for example), and the struggle of service users to interpret their mental health problems in their own way.

Relatable stories

I was introduced to the world of psychiatry in my early twenties, over 30 years ago. I could still strongly relate to every story we heard. For example, one woman understood her experiences as a spiritual awakening but found professionals unwilling to discuss this with her. This reminded me of how I have always found it easier to talk about my own mental health problems with friends or other users of psychiatric services than practitioners.

When I was using services, I felt that psychiatrists were quick to judge, analyse and fit me into their diagnostic boxes. They were also determined to force me to take medication without offering alternative options, such as psychological therapies, which could have been more appropriate to my needs. Through this project, I have been heartened to see that while still far from perfect, it seems that services have improved since the introduction of the Early Intervention model*. People are now given more control over the kind of treatment they receive and can access psychological therapies more easily than before.

New skills

I have been encouraged to get involved with every part of the research process with My Story, Our Future. McPin have supported me to become confident at public speaking and equipped me with numerous skills which will be valuable throughout my life. My role as a Survivor Researcher has improved my social life as well as my work skills. It is good to be a valued member of the team and as a service user, it is satisfying to be able to give back to the psychiatric system. Living felt unbearable at times throughout my journey with psychosis. The tables have since turned and many good things have come from those difficult past experiences. My work as a researcher is one of these.

*Over the last 15 years, the NHS has developed services for people between the ages of 14 and 35 who are experiencing their first episode of psychosis. These Early Intervention in Psychosis services focus on the early detection and treatment of symptoms.

Gary Coyle is a Survivor Researcher at the McPin Foundation. You can read more about My Story, Our Future, including accessing some storytelling resources, here.