The McPin team and a lived experience group member recently attended and co-presented at academic conferences – here are their thoughts on how to make conferences inclusive for people with lived experience of mental health issues and/or neurodivergence.
Attending conferences or other large events can be daunting for anyone – but if you have lived experience of mental health issues and/or neurodivergence, there can be additional considerations too.
Recently, Alex and Annie from McPin and a lived experience group member, Julian, attended and co-presented the RESOLVE project at two academic conferences – the 31st European Congress on Obesity 2024 and the Society for Academic Primary Care Mental Health Conference.
They’ve shared what went well and how challenges at future conferences could be reduced by giving more consideration to accessibility.
First, we’ll hear from Julian Harrison, a RESOLVE Lived Experience Group (LEG) member .
The whole exercise is one of self-containment and management - often of damage limitation, nearly always of maintaining mental equilibrium.
Mental health issues and autism at conferences
Being asked to attend the Primary Care Mental Health Conference earlier this year to offer a lived experience perspective and to help showcase our RESOLVE poster was a real privilege, and it was wonderful to finally meet people that I’ve only known through emails and online meetings.
As is par the course, having both mental health issues and autism poses some challenges at events such as this.
Principally, it’s one of being able to cope with the demands imposed by the occasion, specifically the sheer number of people, the unfamiliarity of location and the unpredictability of how things may go.
I try as far as possible to mitigate the latter by finding out certain things beforehand – timings, parking arrangements, room layout etc. – but often, you’re limited by circumstance and common sense.
You can’t state for certain how the session will go. What will be discussed? Will it keep to time? Who exactly will be there at every stage of the day? Even who you will be next to in a queue for food!
You also can’t know who will be arriving, when and how. For me, this is important – not just so that I can park my car, but because of the need to avoid the sense of panic that I often experience when parking is limited and when I’m not totally certain that I’ve parked in the right place.
The whole exercise is one of self-containment and management – often of damage limitation, nearly always of maintaining mental equilibrium.
Coping mechanisms for conferences
I can cope with the formal proceedings of conferences. I just use my experience of past events.
However, it’s the more informal stuff that I find particularly challenging: the coffee breaks; lunch; social gatherings. They are less easy to predict. The ‘rules’ are not as stringent.
Over the years, I’ve discovered coping mechanisms: Being early; consulting my mobile phone, even having ‘fake’ phone conversations with nobody, just because it looks ‘normal’. Anything to blend in, to avoid attracting attention. In the worst-case scenario, I take myself away. Outside. An empty room. Sometimes, even hiding in the toilet.
What really helps, of course, is having some support, and I was so lucky at Keele. Annie (Walsh, Public Involvement in Research Manager at McPin), in particular, was a rock. Someone I could rely on. Someone that I knew was ‘like me’: a person with lived experience.
However, I have to say that the atmosphere in general was really supportive. People were happy to help, to check up on me after I’d told them of my health situation, to have a normal conversation with.
Nothing was too much trouble. It just shows what can be done to help ease the path many people with lived experience have, unavoidably, to take. It’s always a challenge, but it doesn’t have to be insurmountable. Keele on that day was, in many ways, a model of reasonable adjustment.
Language at conferences
What about the various presentations? Each and every one had some really valuable things to offer.
The variety – within the context of the specificity of primary care – was just right. All presenters engaged effectively with the audience. All seemed to appreciate the lived experience perspective behind the questions that I felt able to ask.
Of course, there were occasions when the language used was a bit of a hindrance: use of jargon; technicalities; avoidable ‘high’ terminological usage; dare I say the academic mindsight and approach?; the apparent need to intellectualise.
But I could follow things, for the most part, even if I had to ask some probing questions and resort to asking colleagues to explain.
Accessible language will always be an issue but if you feel you have the authority and means to offer some helpful suggestions and to criticise when appropriate, it need not necessarily be a barrier. Keele got things about right.
And finally, as to the poster competition, well, we won! Annie’s hard work paid dividends. She had pitched it perfectly. We’d managed to convince the judges of both its merit and, more importantly, of its content. Success! And a wonderful end to a memorable day.
We were the only poster with a focus on lived experience involvement in a project, with a lived experience group member co-presenting, which is still considered quite novel in academic conferences.
Annie Walsh, Public Involvement in Research Manager, McPin
First impressions at conferences
This was the first conference I have attended since leaving academia and ironically the first time winning a poster competition.
When reviewing the programme the night before, I did notice that we were the only poster with a focus on lived experience involvement in a project, with a lived experience group member co-presenting, which is still considered quite novel in academic conferences – it’s great that it was recognised, but it should also be more commonplace.
This was also the first conference I have attended since an extended period of burnout and skill regression that led to the realisation that I am autistic – known in my father but unfortunately not picked up in me until now. So, I will admit, I was initially quite overwhelmed on arrival!
For example, the registration desk was in the same relatively small room as where everyone was congregating to meet, chat, look at posters etc. but it was right at the back. So, you had to navigate through crowds of people, some of which were trying to greet me having only seen each other over Zoom, or provide instructions on where to put posters up, whilst I was just trying to register.
By the time I had it all sorted I was in such an overwhelmed state that I had to step out, fully missing the first talk and not being able to concentrate in the remaining morning ones I did catch.
In my conference feedback, I did include having a separate, calmer room for registration and getting yourself orientated before being pulled into the full conference atmosphere.
However, overall, the conference had a very friendly, helpful atmosphere, and the importance of lived experience voices was felt from the offset. Following meeting the RESOLVE study team and Julian for the first time in-person, we all supported each other and I soon settled into the swing of things.
Alex Kenny, Senior Public Involvement in Research Officer, McPin Foundation
Order of presentations
The European Congress on Obesity 2024 (ECO2024) was a large event with 3,000 attendees. Rather than just academics there was also the presence of pharmaceutical companies.
The headline news from the event was about weight loss medication. There were also other topics presented and discussed, including obesity and mental health and lived experience of obesity.
We heard about a societal shift towards recognition of obesity as an illness which needs a clear clinical pathway for treatment that is not available at present (and how research, education and advocacy will support this shift).
I presented during the Psychology, Behaviour & Mental Health Working Group: ‘We Are Not Equipped to Deal With That’: Overcoming barriers to treatment for people living with obesity and mental illness.
I felt nervous up on the stage in front of so many strangers. I did a quick count and saw that there were at least 100 people in the audience!
I was lucky that my presentation was on the first morning of the conference. I did not spend time during the conference worrying or with anxiety about my upcoming talk as I had already delivered it.
It would be easy and cost nothing to implement this at other conferences, so that people with lived experience of mental health issues go first, or early on, at conferences to preserve their mental health and help them perform. This would be more inclusive.
Use of accessible person-first language
Like Julian and Annie found at the Primary Care Mental Health Conference, I found that accessible, person-first language was used at the ECO2024 conference.
For example, describing “a person living with obesity” and “a person living with mental health issues”, instead of “an obese person” or “a mentally ill person”. A person-first language guide was shared with speakers and delegates prior to the conference.
Language choices can be stigmatising but there is often no ideal solution to this problem. In mental health, language choices are nuanced and subjective. There is a lack of consensus about ‘the best’ use of terminology or way of describing things.
I found it useful to see that we can begin to tackle this through the introduction of a person-first language guide which shaped and influenced this high-profile event, whilst also recognising that people have the right to describe themselves however they prefer, even if it doesn’t fit with the conference’s suggestions.
RESOLVE is led by Aston University to study weight gain as a side effect of taking antipsychotic medication. The aim of the project is to find non-pharmacological solutions to this type of weight gain, for example, exercise and healthy eating which work for people who are in this situation.
