World Mental Health Day is approaching with the theme this year of ‘Mental Health is a human right’. MQ strives to address inequalities and supports projects that aim to redress imbalances in society, such as the Gone Too Soon paper which looks into why people with severe mental illness experience early mortality and what can be done to prevent it.
James Downs, MQ ambassador, shares his experience of being involved in the Gone Too Soon paper, why this study is so important and why mental health is a human right.
I have had experience of serious mental illness over the last 20 years of my life. I have a long-standing eating disorder that has ones of the highest rates of mortality and also many other co-occurring conditions and physical disability as well as a psychological disability I’ve had my whole life.
I struggled to survive to this point, never mind to my full life expectancy.
I heard about the Gone Too Soon project through an MQ email. Immediately it really piqued my interest because I am really interested in research and being involved in research projects. This one was particularly interesting because it spoke to my personal experience.
People with mental serious mental illness die too young. When I hear about this I think “well this is going to be me!” which is a horrible, sad and very bleak realisation. Certainly, many of my friends have died from severe mental illness and related conditions.
But it makes it even more important that I am involved in contributing my lived experience my expertise in research from a lived experience point of view. It’s a way I can respond to how sad and angry I am because a lot of this is preventable. So rather than be engulfed in fear or despair, to do something constructive about it, to use my experience to create something different to change things.
I’m also a big supporter of MQ so knowing that MQ was involved gave me confidence that it would be a meaningful process and not just a ‘tick box exercise’ or tokenistic.
Out Of The Shallow End
The conversation around mental health awareness has meant that there’s a lot of talk about the ‘shallow end’ of the pool of mental health conditions and related solutions. But something like people dying too early because of serious mental illness is not going to be fixed by self-care or mindfulness colouring books.
The Gone Too Soon project matters because this is a human rights issue. This is a tragedy that is happening day after day and while there’s a lot of talk about mental health, there isn’t much talk about serious mental illness and the realities of that. People do die early yet this is very preventable.
Once I was involved in the Gone Too Soon project, the process was extremely clear. This is not something that happens very often. I’ve done a lot of work in mental health research and co-production. Very often people with lived experience are brought in quite late when a lot of things have already been decided. The process is not always very clear, and this wonderful opportunity turns out not to be a very good opportunity at all.
People who are running projects might find it useful to say they’ve included people with lived experience in evaluations when actually people like me should be involved in the running of the project. In the Gone Too Soon project I felt like I was really involved from the get-go in an equal way. I felt that what I had to say was valid. I didn’t feel that the researchers were just going through the motions of getting someone with lived experience to get the project off the shelf. Instead they were truly interested in working with people with lived experience. So the Gone Too Soon project was not transactional. more reciprocal.
The whole team were committed to the value of expertise by experience and the knowledge that can be gained through experience alongside the knowledge that’s gained through more traditional means in academia.
I was involved throughout in many different activities, everything from thinking about how the study was designed to who was involved, how the groups that we had would run, what we would do with the data, how we would write it up, the actual writing, the editing, the formatting, creating graphics. I was particularly involved in the implementation cycle and about lived experience involvement.
I saw my role as being a reality check to shed light on how people with lived experience might read this research and how they are represented. I don’t see this as ‘telling my own story’ but much more about how I can apply my experience to specific tasks, how I can represent other people’s experience and facilitate other people to be involved.
I learned so much from being involved in the project. There are so many different areas involved in the paper, not just why people die too early, but so many other aspects from public health to clinical practice and differences around the world. Community interventions in one country may look very different from another and so it was eye-opening. It was fantastic to see everybody was so respected and the collaboration was incredible.
I learned about myself that I’m better at things than I think I am. I often write myself off.
I don’t have imposter syndrome at all but only because I don’t think you can be an imposter when you’re always an outsider. In this project, I was not an outsider. I was an integral, valued force within.
While it was difficult to confront that a lot of what I’ve been through and some of the impacts on me and my health might have been preventable, and while it was challenging to consider friends who’ve died in light of this too, it was also very hopeful and inspiring. Things can be different; it just requires a lot of will and effort and resources.
Being involved in the project helped me to grow in confidence personally, it’s helped develop and refine my skills as a researcher who has a lot to offer outside of my lived experience. It’s helped me to understand how to use my lived experience within a broader international group. The effect on my life has all been very positive.
Value and Hope in Patient and Public Involvement (PPIE)
MQ coordinated the lived experience involvement fantastically. It was made very clear to me what I needed, in what capacity I was being involved and what the commitment would be. It was all very transparent. I also felt like I had a role in deciding what I wanted to do and I could always say no at any time or I could suggest different things. I felt I was really valued and that was good for me.
It gives me a lot of hope that MQ can pioneer more research across mental health and the lived experience will always be at the heart of that research.
Gone Too Soon is a landmark paper and should have long-standing impact on the field. This multidisciplinary, cross-sectional approach is what we need. So often mental health, physical health and all these things are siloed into different areas. People working together like this is key. The process of this paper set an example within the research of what we’d like to see in terms of the implementation and things going forwards.
Our thanks to James for sharing his experience.
If you’d like to help mental health research, like James, by getting involved in a study you can visit our Participate site to find out more.
If you’d like to support studies like Gone Too Soon in which James was involved, thank you for considering supporting MQ Mental Health Research.