Bethan‘s #MadCovidDiaries 22.5.2020
Being left out is a big thing for me. I’ve felt like an outsider many times in my life, starting quite early when I moved schools when I was 6 – from England to Wales. I was kept down a year, was in a Welsh school when I couldn’t speak Welsh and had separate remedial classes. Anyway, I won’t bore you with more feelings of outsider-ish because what I want to talk about are the secret meetings researchers and academics have.
Recently, maybe the last 5 years, the newness and gratefulness of being ‘involved’ as a service user in research has gone. I know I’m an outsider – I feel it every time I do Patient and Public Involvement (PPI). I’m on the margins staring at the academy’s ivory towers and there’s no door let alone window in sight. Don’t get me wrong, when I started what was known as ‘involvement’ in 2012, I was grateful, flattered to be ‘involved’. ‘Co-production’ is now the in-vogue word for what was known as ‘involvement’. Same old shit, different branding.
Why am I no longer grateful? Over the years I’ve wised up – I don’t want to be invited to meetings where my opinion counts for nothing because the decisions are made by the big professors outside the meeting. At its worst, I’ve seen service user ‘feedback’ and work used to further the careers of researchers for their own end – papers are published, studies are designed, funding is obtained and service users are not invited to collaborate. I now call the act of failing to ‘involve’ service users meaningfully and justly as a ‘secret meeting’.
So what has this got to do with COVID19? Well, I needed a phrase to describe what I felt was happening before the COVID lockdown. In early March I was wondering what the hell the mental health research community was doing or was going to do about COVID19. I asked Twitter, had a few discussions with the Mental Elf and other researchers. At the start it appeared no one was quite certain what was occurring, but then some high profile organisations and researchers said that they were speaking to other high profile organisations and researchers and that all would be revealed in the next few weeks.
Basically, meetings were happening, decisions were being made, but no one was willing to share anything publicly. To me, these were secret meetings – because decisions and actions were not being shared transparently with the service user community. In my frustration I thought, fuck it, if we can’t get to these secret meetings, or find out what’s happening in them, then the service user community needs to do something about COVID19 for those with pre-existing mental health conditions. And that’s how #MadCovidDiaries and @madcovid started. It’s not a research project, but it was a direct response to being on the outside, staring at steep, impenetrable walls leading to some very high ivory towers. Sure, I understand that these big high-profile researchers may have involved their ‘own’ service users, but to me it was a secret meeting because no one was willing to be transparent with me or my peers.
Little did I know that 7 weeks later, the events of those secret meetings and #MadCovidDiaries would collide. Yes, one of the researchers I had approached, decided that they would include #MadCovidDiaries in the work they had been planning in these secret meetings. You couldn’t make this shit up: they wanted to potentially include 60 diaries (at the time) in their work! We started because we were left out of the secret meetings – now the people holding the secret meetings wanted to use our work! I’m being honest here, I was like fuck this shit along with every secret meeting that’s ever happened!
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