IoPPN Research Culture Insights: Lived Experience Advisory Board (Part 2)

This blog is one of a two-part series in which LEAB Member Rachel Hill and LEAB Coordinator Rhea Sookdeosingh share their thoughts on lived experience involvement and the impact the LEAB has had on the Centre’s research culture. Click here for Rhea's blog.

What does Lived Experience mean to me?

When I hear ‘lived experience’ my heart leaps with joy and hope because I still believe that what people like me with lived experience try to do does make a difference. That the involvement of service users in research and policy making holds transformative potential and does affect the decisions made. Or at least it is slowly changing the ways policy makers and politicians think.

I have hope that we will eventually have the better future where the ruling government upholds disabled people’s human rights, enabling our greater equality and inclusion.

Of course, I ask myself will I make a difference? Will my involvement be just mere tokenism?

Well, I have been a member of the LEAB at the ESRC Centre for Society and Mental Health (CSMH) at King’s and believe we are having impact.

We have Courage and Discipline. We are brave enough to push past our fears knowing that what we try to do might make a real difference. It could fail…but it could also help people. We are not afraid to start and do what we can. We strive to seek ways to ensure research remains grounded, relevant, and truly collaborative.

Our reality is that we have all in some form or other experienced significant issues with mental health and community services and therapy. We know something must change, and research has a role to play in that process.

We challenge and enrich current research because if we do not even start/try then nothing will change for sure?

I quote one of my colleagues on the LEAB, Sonia Thompson: “We are passionate about making a difference, and intend to make an impact. We seek to challenge a) traditional hierarchical power structures/systems and b) notions of what it means to “hold or produce knowledge,” both within academia and beyond. We came together to begin to put our own experiences into context. From that process we offer a language that makes that insight accessible to others.”

For myself I joined the LEAB because as a teacher my mental ill health was not a strength that enhanced my work (as I feel it did), but a risk to my professional ability and reputation. I was a burden who needed to be got rid of. And indeed, I lost my job. Because I was scared to speak out and defend myself for fear of being labelled, cancelled, and attacked. I stayed silent and accepted my punishment for being “mentally ill”.

I now see my silence contributed to flame the dangerous ideologies about people with mental illness. This creates a vacuum in which common flawed or absurd ideas can take root and grow. Since this time, I was tired of seeing similar suffering and reading about similar cases. Seeing research and statements with huge gaps between what they say they do and what they actually do. I needed to do something.

The LEAB has given me the courage to speak candidly, to inspire and enable others to speak out and defend themselves. I wanted to change people’s relationship to people with lived experience so that not only are we empowered but perhaps more importantly the people that hold the traditional power are enlightened. Our work as members of the LEAB gives us the potential for major breakthroughs in what research is done, how it is done, who receives the results and then what happens after. Particularly those under-researched areas with difficult topics to address which often hold the biggest potential for major breakthroughs.

We certainly rise to the challenge.

What role has the LEAB played in positively impacting research culture at the Centre for Society and Mental Health?

The LEAB at the ESRC Centre for Society and Mental Health involves people who are not the usual quiescent, unchallenging ones who act as ‘rubber-stamps’ to the traditional decisions and processes. In the words of my LEAB colleague, Sonia Thompson: “It’s almost like you have to take the hand of the people in power and say ‘let me take you to the edge of how bad things are, and don’t look away. You need to see this to understand how bad things are. They won’t go there by themselves.”

I believe we are slowly altering the relationship between researchers and people with lived experience certainly within the CSMH because we are seen as having expert knowledge (alongside our other professional skills,) rather than as passive recipients of care and services.

We firmly believe that we are valued for the expertise we bring to CSMH. As a group, we make a difference in creating new knowledge that will have positive outcomes for people’s mental health and wellbeing. In our discussions, we quote the slogan ‘Nothing about us without us’, a challenge that originated from the Disability Movement. We believe no policy should be decided without the full and direct participation of the very people affected by that policy.

Despite losing my job before I made more career advancement, I have also seen how being open about one’s lived experience can be limited by a glass ceiling, that lived experience expertise is seen as only suitable up to a specific level of responsibility. Systems are not structured in a way that allows lived experience leaders to truly lead, but rather they are there to advise, consult and participate. The LEAB is championing lived experience as a strength that enhances our work, rather than a risk to professional ability or reputation. Indeed, those with lived experience are potentially the stronger candidates for certain roles and within the CSMH we hold positions of leadership and power.

What do you want to see going forward in the Lived Experience Involvement space?

I cannot state how frustrated I get in some meetings where the academic leads/professors/research staff overly use acronyms, technical language and language which has been learned at public schools. I am a linguist but still feel excluded and thick. The LEAB work to inform that such language is often inaccessible to many both in meetings and the documentation published after. We strive to make their language more accessible because we know the wide communities we interact with need to understand what is written and need this change. I think I am forever stopping meetings to ask “what does that mean please?” I feel safe to do so without fear as being seen as the mad woman in the room!

As the LEAB we have those community connections where it is pivotal that communications are received and understood. We strive so hard to ensure that our communities have increased connection and a belief that they are being listened to. That they count. No one can connect with someone struggling with mental ill health and recovery more than someone who has been in that position themselves. We can offer these individuals a level of support and understanding that others never could. They may then be more likely to trust and engage in services offered.

So I would like to see more of the practice that our LEAB does across the UK. More connections with wider communities where the knowledge gained in lived experience groups is shared. That other lived experience groups/boards encourage a culture of listening and being willing to ‘unlearn’ instead of shying away from difficult issues. I want to see others bring a critical standpoint and continue to dig in, push back, and hold people to account.

I want to see different knowledge bases and contributions respected, valued, and blended. Where other lived experience groups feel important, encouraged, recognised, shared, valued, and blended. Where disagreements are welcomed (they are often the highlights of our meetings!) because this is where the hard stuff is dealt with and we get real work done.

We are dreaming big and want others to do the same!

Top Tips for getting started with Lived Experience engagement

When our LEAB work together we move mountains – for example our position paper (publication forthcoming), mental health draft bill evidence submission, winning a King’s Engaged Research Award for Transforming Research Culture as well as an SSPP Impact Prize. We have made impact and people took notice.

First and foremost, you need a strong leader. It is imperative to have a strong chair/manager who is sympathetic, who welcomes apparent discomfort and is able to hold that space for feelings, ideas and opinions to be aired and develop. You must not, if you do undertake this role, take it lightly and realise you will be facilitating difficult and demanding discussions where painful and troublesome issues are raised. As the leader you need to be receptive and able to respond and hold that safe space as long as is needed. Allow the group to stray from the planned agenda to share and support painful situations. You will need to take this back to your “managers” and get the seriousness of what has been raised across without it being dismissed or ignored.

And that is what we have in Rhea and her leadership is an exemplary model for you to follow. She is not afraid of making mistakes alongside us and ensures our voices, however small and shaky, are heard and respected by the hierarchy/more powerful roles.

For myself, I would not have written this without the support Rhea gave me. From the encouragement to even volunteer to do this, to holding meetings where we spent the time just writing which enabled me, who finds concentrating and getting started so difficult, to just sit down and “do”? To discussing my fears, problems and issues as they came up with compassion and then in reassuring me when I wobbled, doubted I could do this and did not meet deadlines as planned. I would have fallen at the first hurdle without her and am so grateful and empowered that I am now submitting 4 more pieces for the CSMH!

The LEAB has certainly made me feel like a fellow professional in terms of what I have to offer. I am no longer just a patient or research subject or consumer unequal to them. I am not just a novelty with only inspiring stories but someone with invaluable insights. I can fill in the gaps of academic knowledge and rewrite an inaccessible academic paper and article . I can make paperwork understandable and not overwhelming. And our LEAB respects our knowledge because we chair meetings, we speak at public events and represent ourselves in person. We make the introductions and write our own papers to publish.

If we are to change the way society looks at and treats those living with mental ill health and the services provided, we need more of what we do at the LEAB and there are many ready and able to step up to the mark and take on the challenge. Up until my involvement I never felt like clinicians and researchers saw me as an equal in some sense. But when I started with the LEAB I found stories of others who had successfully found their voice and new life purpose. How much more at ease I would have felt had I been able to talk to someone who had been there and done that. To be able to talk to someone about what my life was like?

If other groups can do this there will be a real snowball effect?

We can be the successful example that lead others into strong LEAB’s too. To see us forge the way forward in encouraging more groups is our goal.

About LEAB and the Centre for Society and Mental Health

The Lived Experience Advisory Board (LEAB) at the Centre for Society and Mental Health (CSMH) is comprised of 9 members from diverse personal and professional backgrounds with indirect and/or direct experiences of disabling barriers, neurodivergence, mental distress, mental illness, trauma, caring/supporting people in mental distress, and/or ref(using) mental health services including experiences of iatrogenic harm. Using an intersectional social justice approach, they seek to ground the Centre’s direction and wider conversations about mental health in their lived experiences.

The CSMH sits across IoPPN and the Faculty of Social Science and Public Policy (SSPP) and supports a range of research programmes which all address some aspect of the social determinants of mental health.

You can read more about the LEAB here and CSMH here.

This blog is part of a ongoing series looking at research culture at IoPPN. If you would be interested in contributing, please contact aneita.pringle@kcl.ac.uk.