Making a difference through involvement and research
By Dr Sam Robertson
Initially, I suffered severe post-natal depression after the birth of my son. This ended my career as a teacher and started a period of nearly twenty years as a service user of mental health services. However, being encouraged to get involved in service user and carer activities helped me back into the world. From a very small and slow start, service user involvement has supported me in so many ways including helping to rebuild my confidence and to develop a more positive identity. It has been part of my individual recovery journey – has given me a sense of purpose. It has contributed to what I do now as someone who has something to offer.
Over the past 20 years, I have been involved as an: activist (challenging service provision and policy); a contributor to the discussion in various Trust meetings; Chair of my local Mind; a peer supporter; service user and carer involvement coordinator in adult mental health (Southern Health); a researcher; an educator and trainer; an independent service user consultant; and now in my current role at Sussex Partnership NHS Foundation Trust where I have two distinct but complementary roles. My involvement journey has gone from one side of the fence to the other – i.e. from the role of poacher (whereas a challenger of the system, I was invited to meetings and asked to engage in ways determined by others) to gamekeeper (part of the system). I am now in a position to set the Patient and Public Involvement (PPI) agenda and decide on strategic goals. Interestingly though, in my wider role within the management structure of research & development, I can still be the challenging poacher!
Within my role as Lead for Service User and Carer in Involvement in Research & Development, I lead a team of three PPI co-ordinators who organise Lived Experience Advisory Panel (LEAPs) for individual research projects and research theme groups (e.g. dementia, psychosis, mood and anxiety and Approaches to Involvement and Recovery (AIR). This involves consulting with researchers, overseeing and support all service user and carer involvement in research and development. We also have a Lived Experience Advisory Forum (LEAF) which provides the strategic overview for Involvement across all Research & Development activities. I am passionate about PPI being meaningful and more inclusive and diverse, and we are developing a new recruitment strategy.
I believe that PPI should offer the opportunity for regaining confidence, utilising an individual’s experience, skills and interests and by providing training to upskill those who wish to get involved. I also expect PPI and researchers to work collaboratively. Truly co-produced research leads to studies that are both enriched and more likely to be translated into practice. Developing on-going relationships is very important, including having conversations with people who do ‘involvement’ differently [e.g. engage and consult]. It is important to challenge the rhetoric, models, practice and language of PPI and co-production; and to reflect on what we actually do and what difference it makes.
My post is part-funded by McPin. I am keen to contribute to the national service user and carer research and PPI agenda. My other role as the AIR theme lead utilises both my PPI role and my own research interests. I recently completed my PhD in personal narrative development and mental health recovery. Using Participatory Action Research, my co-researchers (all service users) developed an 8 week peer-led 23 developing a personal narrative workshop programme. I will pilot this programme in the near
The following areas of research can be supported within the AIR theme:
Mental health recovery research
Research in mental health service provision that involves service users, carers, peers and staff (e.g. ENRICH and RECOLLECT)
Research where service users, carers, peers and staff are the researchers
Research on involvement and the impact of involvement
I welcome the opportunity to talk to researchers (and would-be researchers) about their ideas, questions and concerns, please email: [email protected]. We are holding an AIR Conference: Exploring Involvement, Research and Working Together on Tuesday 6th November 2018. Find out more about the event here.