Reflections from the Nottingham consensus workshop

Tommy Pouncey lives with MS and is part of our Patient and Public Engagement Group (PPEG). He shares his experience of attending the dementia prevention consensus workshop hosted by DeNPRU-QM in Nottingham in October.

I was nervous, I’d been talking to a mate who explained that neurologists were the nerds of a hospital, I sat wondering if I’d have anything to say. He said “Surgeons are rock stars and neuros always have their nose in a book”. Riding the train down to Nottingham, I could feel the apprehension, even the smelly feet of a passenger couldn’t distract me. The consensus was held at hotel close to Nottingham University, as I took a taxi through the city the red sandstone buildings gave way to a modern glass building surrounded by ponds and lakes with geese mithering each other. 

Walking through the doors I saw Charlie and Charlotte who I knew from video calls. They were all sat having a beer, now beer I can do, with each sip the apprehension faded, they were all just lovely kind people. So many lovely and interesting people. Alison, Sedigheh, Claudia, Harriet everyone so fun to talk to. I was at ease. 

The consensus started the next morning, the best neurologists of the country, government advisers, researchers, psychologists, journalists, a bonanza of boffin business.  I heard stories of people flying in from Canada, other stories of VIP neurologists, this felt like a big deal, something important. Even Michael Jackson was coming, which surprised me as I thought he was dead, turns out it’s numerologist of a similar name and not the pop star.  

I’d love to tell you how easy it was to just sit there in the conversation, it wasn’t easy at all. Hearing these people speak astutely and broadly about difficult concepts and ideas; as a layman, was incredibly difficult. Cohorts, low agency, apolipoprotein E, prodromal, pathologies. Heck, I was in a diction tumble dryer being bounced around until the next new word hit me, then the acronyms started. At times I wasn’t sure if English was being spoken. I spent a lot of time on my phone googling words, I think I heard 4 words I’d never heard before. The difficulty was invigorating and exciting. I loved it.  

The bit I didn’t like. We sat in the cafe, adorned by bits of old bicycle tat; turns out Raleigh bikes were built in Nottingham and gluing seat posts and battered old wheels to the wall was cool. It was some of the weirdest and prissiest food I’ve ever eaten. Heritage carrot and quinoa salad with pomegranate… warm watermelon and pumpkin seed salad… it was extremely healthy and super odd. Every meal seemed accompanied by another type of melon. I was melonned out my melon by the second meal.  

For me, to find myself in the middle of these conversations and in the room was astounding and wonderful. After a few hours I’d caught up with the language barrier and I was chipping in. Since joining the PPEG I’ve struggled to see the links between chatting online and research which benefits people, yet here I am in an important conversation speaking about things that will dramatically change outlooks for thousands of people. I’m definitely doing this again.