‘Surviving survivor-led research: interviews with Lived Experience Researchers’

Vicky Nicholls, Service User and Carer Involvement Coordinator for the MHPRU opened the session with a short talk, acknowledging her own struggles with her emotional and mental wellbeing and her passion for research. Lived experience MHPRU researchers took the lead on coordinating and running the slot.

Vicky outlined briefly the purpose of the LEWG). It has always had a core function of bringing views in from the user and carer-led mental health research community to the powerhouse of academic research. Vicky drew the attention of the audience to the series of ‘Lived Experience Commentary’ posters highlighted in the poster room. See the posters here. She commented that, not without controversy, these briefings had become a key feature of the PRU’s work and represent the results of truly co-produced ventures undertaken by members of the LEWG. Initially the idea of Professor Sonia Johnson, the commentaries have become a standard part of MHPRU practice when a new paper is being produced. They are published alongside the MHPRU’s papers in a variety of academic journals.

Vicky then undertook mini-interviews with three research colleagues: two members of the LEWG (Raza Griffiths and Rachel Rowan Olive); and one paid research staff member (Dr Becky Appleton).

The first mini-interview was with Dr Becky Appleton, researcher at the MHPRU. She was asked about the value that she as an academic researcher found lived experience research brought. Becky emphasised the value of involving researchers with lived experience throughout the whole research process and not, for example, just having one meeting right at the start that includes them, and then forgetting about them.

In Becky’s interview, she described what she had learned from working alongside lived experience researchers. She explained that as an academic researcher, you tend to read lots of papers written by other academics. But working closely alongside lived experience colleagues meant you were exposed to different perspectives, and could readily make small tweaks to, for example, the language you use, that makes a big difference to service users and others.

In his interview, Raza Griffiths, a researcher from the LEWG and activist, emphasised both his negative and positive experiences of mental health services. Through his experiences, he was in touch not only with his own experiences but with a broader constituency. The ‘lived experience’ bit, he explained, was very fundamental to how he sees himself. Raza discussed the value of peer support, having others around with similar experiences who can offer what is, to some extent, pastoral support.

The third and final interview was with Rachel Rowan Olive, a researcher from the LEWG and mental health campaigner. Rachel explained that her lived experience goes with her wherever she goes; it’s more about how much she is able to be a lived experience researcher in various settings; which hat she is wearing, and how much of her lived experience she’s allowed to bring to the table. Rachel said she had more or less fallen into the system just as austerity was biting, and how this had been a radicalising experience. Rachel also highlighted how she had an awareness of the limits of her own lived experience, and values collective lived experience and not just her own. For Rachel, her number one priority in mental health research would be bereavement by suicide amongst the survivor community.

You can see the video of the full session here: 

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