A new innovative group called the ‘Association of Mental Health Peer Researchers’ was launched on World Mental Health Day 2019. The aim of this collective is to bring together people with lived experience of mental health issues, who are doing mental health research, across the University.
The official launch was attended by our key allies from different Schools and research groups, with the aim of informing them about our work so that they can support us and sign-post potential members. Following an endorsement from the Institute of Mental Health’s Director, Prof. Martin Orrell, the aims and objectives of the group were outlined (see below), and then two of our members showcased their research: Minh Dang spoke about her ongoing PhD work on the wellbeing of survivors of modern slavery, and Stefan Rennick-Egglestone shared about how peer researchers are involved in the Narrative Experiences Online (NEON) study. There was a buzz about the whole event, and people were excited about our vision for our work going forward.
Our new Association is open to the following people, based at or registered with the University of Nottingham:
- Anyone in a research post (Masters; PhD; Associate; Post-doc) at the University of Nottingham;
- Anyone who is involved in mental health and/or trauma research (broadly defined)
- Anyone who self-identifies as a service user and/or survivor and/or lived experience researcher;
- And anyone who self-identifies as having lived experience of their research topic.
We currently have 12 members (two post-docs, nine PhD students, and one Research Associate), from across four Schools: Psychology, Law and Social Sciences, Medicine, and Health Sciences. Our topics currently include research into: peer support workers; ADHD; recovery narratives; modern slavery; mental health first aid in the workplace; technology and mental health; young people and self-injury; inpatient experiences of risk assessment and management; and the mental health needs of emerging adults. The research topics cover a range of issues, populations, settings and methods/methodologies.
We’re slightly different from other groups of service users, who may be acting as consultants, or advisors to research teams, or those doing Patient and Public Involvement or Engagement work. We’re research active, and we see ourselves as a research group. We acknowledge that not everyone will self-identify as a ‘survivor’ researcher, that others with lived experience may not be using services, and that we’ll bring different backgrounds and experiences to the group. But we’re united around our two core aims of: raising the profile of peer research and supporting one another, as peer researchers.
Our first key objective is to raise the profile of peer research. We’ve seen experiential knowledge being utilised (and sometimes exploited) to improve the design and conduct of (often other people’s) research. We’re thrilled that people with lived experience are now conducting research into topics they have personally experienced. We know that the marginalised, and oppressed, can see and experience the world differently from the mainstream and the privileged – this opens up new possibilities for knowledge, for critiquing the social centre from which we are excluded, for challenging the blind-spots of those who are centre-stage. We can therefore bring new perspectives to the field of mental health. We want to disseminate user-led research. We are currently sharing resources with one another via Dropbox, and we hope to conduct an evaluation of our work at the end of the academic year, in order to add our experience of working, as an Association, to the evidence base.
Our second objective is to offer peer support to our members. We meet once a month. Every meeting will have space for peer support – for chit-chat, for raising concerns, or for talking about our challenges. We want to create a safe and supportive space for that. Our dual identity of having learned knowledge and experiential knowledge, or of having one foot in the academy and maybe the other in services, creates unique challenges for us. To some service users we’ve sold out, in aligning ourselves with academia we’ve joined the dark side of the force! Some academics can’t understand why we might identify as a ‘service user researcher’ – we’re just researchers, surely. We also have to navigate issues of disclosure, of how we manage feeling unwell whilst we’re in post, of dealing with the emotional labour of carrying out our research, and other similar issues – and we want to create a forum where we can talk openly about these kinds of struggles.
We usually meet on the last Thursday of the month (unless this clashes with half-terms or public holidays), normally from 12:30-13:30 at the Institute of Mental Health. However, please do email one of the admins for an up-to-date programme, and we can then add you to our distribution-list (either openly cc’d or bcc’d in emails, whichever is your preference). We also stay in touch via WhatsApp (joining is optional) and we’re on Twitter @AssocMHPRes and use the hashtag #AssocMHPRes.
If you’re a service user, who is thinking of getting involved in research, we recommend downloading ‘A Research Handbook for Patient and Public Involvement Researchers’, which is available free here: https://www.manchesteropenhive.com/view/9781526136527/9781526136527.xml
Andrew Grundy (PhD student, School of Health Sciences) on behalf of the group.