McPin Research Director Vanessa Pinfold considers the place – and future – of mental health research, and in particular lived experience, in the world during a time of flux.
Vanessa Pinfold
“Every day is a mental health day” is a phrase you’ll hear a lot at the McPin offices around 10th October – World Mental Health Day. Balancing our health and everyday living is a constant for all of us.
As the world navigates ever-changing circumstances including conflict, climate changes, racism and discrimination, and food poverty, having just the one day to focus on an issue can seem like a gimmick. But it is vital to raise awareness about the importance of mental health.
The authenticity and passion of lived experience
This year, awareness raising for McPin involved a speaking slot at a neuroscience convention in Barcelona, held on World Mental Health Day.
We spoke alongside a lived experience advocate – Grace Gatera from Kigali Rwanda. We had been planning our talk for a few months but like all plans you need to be adaptable.
Despite Grace’s best efforts to get her visa to travel to the EU it did not arrive in time. Bureaucracy got in the way. The conference was an in-person gig so we could not ‘Zoom’ her into the room. So, did we cancel?
No – we were passionate about bringing lived experience of mental health issues to a conference like this so, on a Saturday afternoon, Grace and I chatted about what we both felt comfortable with and how best to proceed. It had to be a shared decision.
We decided we couldn’t miss the opportunity to bring the real lived experience element central to a conference like this. We knew we were going to have to do something a bit different – but it still had to be authentic and passionate.
So, together we made a video to insert into our presentation. In doing so we worked out where we first ‘met’ in 2018.
I was drawn to all the initiatives beyond the UK that had so much we could learn from. Grace Gatera shared her story of childhood trauma and her mental health journey on the lived experience panel.
Researchers joining communities, at home and abroad
I was at an international health conference in London and there was a lived experience panel hosted by Sue Baker, from Time to Change, addressing international efforts to address stigma and discrimination.
There was also the Friendship Bench project from Africa being launched and a physician from Philadelphia talking about community engagement.
What I saw showcased at this conference was not researchers sitting in offices, but researchers joining communities to paint buildings with public health messages.
I was drawn to all the initiatives beyond the UK that had so much we could learn from. Grace Gatera shared her story of childhood trauma and her mental health journey on the lived experience panel. Sharing this with Grace, she says she does remember McPin being at the conference because she still has one of the calming toys from our booth.
Little did we know that we would, a few years later, be regularly sitting in meetings together, continuing the campaign to highlight the importance of lived experience in research and mental health science.
There is skill and emotional resilience in bringing the personal and the scientific together. The stand-out moments are people bringing activism into research, those who will always ask: what is the point?
From tokenism to empowerment
Grace and I are both part of the International Alliance of Mental Health Research Funders lived experience working group.
Our Barcelona presentation was titled ‘From tokenism to empowerment: lived experience experts in mental health research’.
What I have learnt from working alongside people with lived experience in roles such as young person’s advisor, public contributor, peer researcher and senior service user researcher, is the skill involved in combining research expertise and lived experience to benefit research endeavors – sometimes as a user-led team but more often as a collaborative research programme.
There is skill and emotional resilience in bringing the personal and the scientific together. The stand-out moments are people bringing activism into research, those who will always ask: what is the point? Are we doing the best by our communities, resource allocation and the sector of mental health progressing this research work?
I tried to amplify this message alongside Grace’s clear call – make space in your research for more people with lived experience to get involved. You may be surprised by how clearly your concerns are addressed. We know that people with lived experience are keen to be part of the mental health field, and their contributions come with the wealth of having lived with the challenges they are advising on.
Building better processes into research
Our talk in Barcelona was well received. We shared tips on how to reduce tokenism in research involvement.
It was noted by one audience member’s question’s that in a talk about tokenism there was a distinct irony that the Black African woman was absent, and the white woman from the UK was present – no problems with her travel arrangements.
We were also asked how lived experience researchers can work objectively and whether ethics committees need more lived experience members.
I explained that you can build processes into research to ensure all teams deliver research with integrity, rigor and following best practice research governance processes.
I also agreed that we do need to look at key structures around research including ethics committees to bring in more lived experience expertise into decision making.
The human connection should be fostered; it must not be lost. The goal must be to work with people with mental health issues as research partners. This should be integral within the science process.
Our minds, our rights
Whilst worthwhile, I found the whole conference an unusual experience and slightly disconnected from how I am currently feeling. The world seems to be in constant flux; I feel emotional and uncertain.
There was no mention in my earshot that it was World Mental Health Day or of the theme: Our minds, our rights. Our presentation had the slogan on its opening slide.
It is clear there were a lot of people in attendance progressing neuroscience. Over 6,000 registered for the event, including lots of early-career researchers.
Neuroscience is an increasingly popular subject to study at university. This is a good thing. But lived experience cannot be sidelined in the researcher sphere.
The human connection should be fostered; it must not be lost. The goal must be to work with people with mental health issues as research partners. This should be integral within the science process.
People with lived experience want to get involved in neuroscience research too.
Connecting the people with the lab
How can we connect the laboratory with people who experience mental health issues?
A good example is the Meeting for Minds synergies series. It would also be good to build an international conversation about lived experience involvement in neuroscience.
A couple of speakers brought the personal into the room, including Prof Kafui Dzirasa from the USA talking about his family in Ghana, where several of his mother’s siblings have schizophrenia. That was great to see and helps people working in the field of lived experience involvement feel a little less alone.
Our message for congress was the importance of mental health activism – with research being part of the strategy for driving change in the world.
Mental health research should be underpinned by a social justice and human rights focus, regardless of topic. So, though World Mental Health Day 2023 has ended, the theme needs to be a constant.
