Sounds like a re invention of the wheel. If it is, it’s like moving from a cart wheel to a Formula One wheel. As is well known I do a lot of Co Pro, and when first asked to take part in this particular project I did think “Oh no, not another one “.

This project was funded by EMPOWER and, tacky though it sounds, I did feel empowered more than ever. I can’t honestly remember who or how it got started, but I worked with Ellie and Laiba, two of the best authors I’ve worked with, Ronald appeared towards the end, and gave some invaluable insights; see later.

he boring bit of doing the Literature Review was done by the Professionals who picked out key points from Academic Papers, I can’t say they were boring as at least one was Co authored by me, but in a very different sense. Being honest, I felt humbled that little old me, who was told at a posh Boarding School that education was wasted on me, was now being quoted as a co author on an Academic Paper.

Anyway, we put aside an hour a week, and from the very beginning it was “live” co produced. We all came up with what the main sections should be. Ellie did the typing, however she was often typing just what came out of my mouth. Due to my dementia, I can’t read aloud, so everything I say is off the cuff, albeit it’s better when I have had time to think about it. Even so, much of what I said impromptu was written as was; this has never been the case with all my prior work. We all chipped in with sentences and our thoughts. For the first time in my experience, I was able to write about mental health and how it can affect the Lived Expert.

The main thing that I gained came when I realised that the researchers using PPI are human too, and had needs too. We cover this very well, explaining that, especially Early Career Researchers (ECR), might need reassurance both from their Supervisor but also from us. We also discuss the practicalities of being an ECR, and how their mental health is importation too.

Not only were my words written live, we highlighted some quotes from myself, Laiba who gave the researcher’s perspective and also Ronald who had some very impactful insights, he is an Artist, whilst I don’t have an artistic bone in my body.

The only downside to working this way is that we obviously jumped about the pages a lot, my Dementia hates sudden movement like that, so I just learnt to close my eyes when this was being done.

After this experience, all I can say is; woe betide anyone who doesn’t allow me such freedom. There was absolutely no power imbalance during the actual writing; a totally unique experience for me as was thinking about PPI from a researcher’s perspective both practically and emotionally.

I hope that those who read the actual Paper, it will be shared at the Sandpit realise the importance of this Paper and find it helpful.