My voice matters: Co-production on the PARTNERS2 study

The sixth National Co-production Week 2021 runs from 5th to 9th July. It is an opportunity to celebrate, gather (virtually), share good practice and promote the contribution of people who use services and their carers in developing better mental health provision. During this week, at the McPin Foundation, we are sharing some of the findings and successes of the PARTNERS2 study, which will end this year. This explored new ways of supporting people with schizophrenia, bipolar and other psychoses within GP practices, including the development of a ‘care partner’ role. Dawn Allen, a member of one of the PARTNERS2 Lived Experience Advisory Panels (LEAPs) writes about her experience on the study and about why she is invested in mental health research.

This blog mentions suicide. There is a link to a list of support organisations below.

Dawn Allen

My first experiences of research

Research was something new to me. A few years ago, I got involved in various projects at the University of Manchester. It was here I heard about PARTNERS2. I was interested in being involved because it was a way to support the development of better joined-up care and services for people with mental health problems. I was a carer for my mum for many years and being able to have a care partner involved in my mum’s care planning would have helped her manage her illness. When I started being involved in research in Manchester, it enabled me to reflect on my life and share experiences of poor service and care, in a way that could help others. My mum had spent decades in psychiatric care, and my brother and I were never asked how we were coping as carers. It was like we were invisible and didn’t matter. Through the PARTNERS2 research study, I got to meet new people by joining the Lancashire LEAP, which helped me to address the social anxiety that I experience, though it is something I still have to manage. 

This is part of my story. You may wonder what this has to do with Co-production Week? Whenever public weeks come around, it can be a really useful time to reflect and think about the impact of Co-production on my life and the research I have been involved in. With PARTNERS2, it was a huge multi-site trial using co-production methods. There was a Lived Experience Advisory Panel, of which I was a part, as well as research roles for service user researchers. Given the scale of this study that took place over a number of years, as a team, we decided that it would be useful to distill some of our learning on the methods of co-produced research into a paper.

Covid, suicide bereavement, and taking action

When I think about the impact of my work on PARTNERS2, I cannot help but think of how much my own life has changed since I joined the study in 2017. A lot has changed for me since then. For one thing, in 2018 I got married. Then, we moved house, my son started school and I started a new job. Becoming employed provided me with the confidence and self-esteem that has massively improved how I feel about myself. I found a huge sense of accomplishment, which is supportive to my mental health. My confidence was helped by working on PARTNERS2.

Unfortunately, since the pandemic began in March 2020, I have also become more isolated, working from home, while my son was learning from home as well. This was very stressful for everyone. We are however very fortunate as our local community in Haslingden has supported each other – not every area has this kind of community spirit. 

I also suffered a suicide bereavement in April 2020. My brother, Paul, aged 49. He had suffered for years with severe depression, which started as a child. His death has made me even more committed to helping provide support. One way I do this is through peer support via social media. I am the co-founder of Making Mental Health Positive (MMHP), created in 2011. We provide peer support and awareness of mental health conditions through different online channels. In April 2021, on the anniversary of my brothers’ suicide, MMHP was formed into a constituted group, and we were awarded our first funding in May 2021. 

My voice matters

Research is important to me because it provides context for what goes on before NHS mental health care is funded. It also enables the public to have a say when it is delivered through co-produced research like the PARTNERS2 study. I think this is really important because it provides some hope that mental health care will improve for the benefit of patients and not for the benefit of commissioners. Research that is multi-site also means communities can talk about their own needs as what is needed may differ depending on where you live. 

Co-production enables me to be involved in research and ultimately to use my voice to affect change to the wider mental health services landscape. I think further power needs to go to service users and carers to help create and deliver research questions especially if they have lived experience of poor care. There is further progress to be made and at a greater rate than we have now.

What I learned from PARTNERS2 was that I needed to overcome my social anxiety. Of most benefit was the social aspect of meeting new people and talking about things that mattered to us. Some of the work has included commenting on research plans and meeting the wider research team. We helped develop the collaborative care role – the care partner position. But we also dealt with disappointments, for example, I was disappointed when the Lancashire site closed early. But I was glad to stay involved and see the project through to the end. Our co-production paper was a collective effort – a good example of how academics can work with service users and carers and learn from each other in the process.

Dawn Allen is a member of the PARTNERS2 Lived Experience Advisory Panel and co-founder of Making Mental Health Positive.

Samaritans provides support for people who are suicidal (freephone 116 123) and here is a list of some other organisations that provide mental health support.

For more information on PARTNERS2, please check out our video here:

For more information on MMHP: and the Facebook page

Find out about Co-production week 2021: