Funded by the NIHR as one of the seven ARC National Research Priority areas, the Mental Health Implementation Network (MHIN) aims to drive national collaborations and changes in mental health practice. The involvement of people with lived experience of mental health services is essential to ensuring the MHIN’s work reflects the needs of mental health service users.
As the MHIN programme’s funding is now coming to an end, this is an important moment for the lived experience members to reflect on how patient and public involvement has been embedded across the MHIN programme to help inform future work in this area.
In this blog, Amy Allard-Dunbar, peer researcher; Lucy Gallagher, PPI coordinator; Jason Grant, MHIN PPI lead; and Expert by Experience members from the MHIN Advisory Board - including Joyce Fox, Michele Lin, and Runa Udin - share their insights on how they got into the world of PPI, and reflect on the value that PPI has brought to the programme.
Lucy: I developed a strong interest in patient and public involvement during some work experience within the PPI department of an NHS Trust.
Amy: I first came into the world of PPI through caring for close loved ones who had mental and physical health difficulties at various points in their life.
Through a period struggling to achieve advocacy for proper care for my loved ones, I sought to inform myself through seeking support from third sector organisations providing guidance and advocacy
Runa: I come from a Bengali background, and growing up, my parents didn’t speak, read or write English. As a small child, I became the translator for everything - from doctor’s appointments to filling out forms. Looking back, I realise how often people like my parents, and even myself, became invisible in these systems. Decisions were being made about our lives without us being part of the conversation.
Michele: I stumbled into the work of PPI in 2020. At the time, I had never heard of co-production, but the research team were passionate about integrating co-production with young people into their work. From then on, I felt compelled to draw on my own experiences to help create research that is truly informed by the people it aims to impact - ‘doing with’ rather than ‘doing to’ so to speak.
Joyce: I became aware that research played such an important role in informing which services should be commissioned, yet the research was seldom actively shaped by patients nor had patients as part of the core research team, like having public contributors.
Lucy: Lived experience has been a key part of the MHIN programme and spans the breadth and depth of our structures.
The most inspiring experience I had with this team was with a group of female Somali refugees who shared the challenges they had experienced in their local community when some of community members experienced mental health issues. We were able to have an open discussion about cultural differences and how they can impact on how care might be received by different groups
Amy: PPI overall has helped to ensure that MHIN has evolved over the years to be an open and collaborative programme that values lived experience.
Runa: For me, it is about filling those gaps where people like my parents - who were invisible in so many systems - would have been missed.
Michele: I think that PPI has helped to bring an alternative perspective that can sometimes get lost in wider research teams.
Joyce: PPI in MHIN has brought a lived-experience reality and focus to the projects.
Jason: PPI has been supported to have a seat at the highest level of decision-making across the programme, which has humanised aspects of the work.
The lived experience input on the Advisory Board has played a crucial role in keeping the MHIN programme accountable. Our lived experience members have challenged key decisions, questioning which outputs would have the greatest societal impact and how best to disseminate them to reach the right audiences.
The MHIN selected three interventions to be implemented across different regions in England: improving access to mental services for minority ethnic communities; implementing parent-led CBT in schools to help children with anxiety; and implementing alcohol assertive outreach treatment. Within these individual research projects, the impact of PPI is evident in their results. Patients and public contributors have added a new dimension to the work of study teams, enriching discussions and shaping meaningful outcomes. This was particularly clear during the project dissemination webinars, where each event featured a dedicated PPI segment. These sessions not only highlighted the real-world impact of the interventions, but also showcased contributors’ experiences of working within the projects.
At different sites across the country where selected interventions were being rolled out, this work was made possible thanks to the careful guidance from PPI members. They ensured that each stage of implementing the interventions was carefully tailored to their communities’ needs. So many incredible adaptions have been made along the way.
Within the MHIN team, PPI has been essential in keeping collaboration at the heart of our work. Input from PPI members has ensured that sufficient time was allocated for meaningful engagement, while bringing vital lived experience perspectives to key decisions and outputs.
The world of PPI must continue to champion the voices of patients and carers, ensuring that researchers involve them at every stage and are supported in doing so. When patients are empowered to step into this space, they bring unique perspectives that challenge assumptions and raise critical questions - many of which have been instrumental in shaping decisions in the MHIN. PPI offers a powerful opportunity to challenge existing systems and push for greater inclusivity in mental health care.
PPI has brought a richness and authenticity to the MHIN projects that would not have been possible without it.
Read more about the MHIN projects: