In our latest guest blog post, involvement colleague Caroline Yeo talks about her experience of working on the NEON project, and the value of meaningful involvement in research.

I am a survivor

I have been working in patient and public involvement for about 10 years. I now call myself a mad identified survivor and peer researcher. I am a person with lived experience of childhood trauma and mental distress, and have used mental health services for about 20 years. I've experienced good, bad, and at times abusive treatment, and thus I am a survivor.

I use this lived experience in the work that I do and as such I class myself a peer. The mad identity comes from the mad pride movement and the field of research which has emerged from the survivor movement, reclaiming the word once used to dismiss our voice and our power. Voice and power are so important and those labelled mentally ill are some of the most marginalised and ignored people in our societies. My hope has always been that in my research I can in some way champion the voice of lived experience.

I now work on a project called NEON (Narrative Experiences ONline), which is building a large and diverse collection of lived experience narratives, with the aim being to see if people with mental health problems benefit from accessing other peoples stories. I have been given the opportunity to lead on two studies. The first was a qualitative interview study with the curators (people who build, edit and organise collections) of lived experience narrative collections of mental health service use, recovery or madness.

I created a typology of curatorial decisions with 6 themes, collectively referred to as VOICES, which stands for values and motivations, organization, inclusion and exclusion, control and collaboration, ethics and legal, and safety and well-being.

Lived experience

My lived experience informed so much of this work:

• I was able to recruit curators with lived experience from survivor organisations who are typically “hard to recruit”
• during the interviews I could build rapport and go deeper into “challenging” or “distressing” subjects which I had personal experience of
• in the analysis of the interviews where I had my own lived experience of curating a lived experience narrative collection

As first author on two peer-review journal papers published on this study, I chose some co-authors who were survivor researchers working in the community or people with lived experience. The two papers can be found here and here. 

In the second study I led, which was a systematic review on the uses and misuses of lived experience narratives in the field of mental health, some of my co-authors wanted to declare their lived experience (and some chose to remain anonymous) in the peer-review paper published in the Schizophrenia Bulletin, as a way to promote the great benefit of having lived experience in conducting research. The paper can be found here.

The systematic review I co-wrote highlighted some of the misuses of lived experience narratives, such as the lack of diversity. In involvement, and research in general, I have found BAME or LGBTQ2S+ voices are often not invited to the party, or people who attend meetings and have very challenging, negative voices are not invited back.

Meaningful involvement

Involvement can be a tick box exercise and a tokenistic add on. Universities can be seen by the public as elitist ivory towers, whose doors are closed to the uninvited. However good public and patient involvement can transform research in so many positive ways. There are many ways to involve people, for example being participants in research studies, lived experience advisory panels, co-design and co-production. There is also survivor led research, where people with lived experience design, conduct, analyse and disseminate their work.

The voices of lived experience are often not valued for all that they can bring to the party. Personally, I brought my story, my pain and traumas, my ability to connect with others in shared experience, understanding, insight and empathy, and a hope that research can eventually improve the mental health services which have failed me and so many I know. However, unfortunately for me the party is nearly over as my contract on NEON is coming to an end and I have to wait for another invite to join a different research project. I hope one day it could be me sending out the invitations.

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