Yesterday I found myself having a trip to the seaside town of Scarborough to a newly formed DEEP group for people with dementia – just like our Minds and Voices in York.They’ve decided on the name:
VIBES – Voices Involvement Belonging Empowerment Sharing
My good friend Liz, recently diagnosed with Vascular dementia is a member and I’d hoped to be at the first meeting last month but I couldn’t make it. However, this month I decided I’d make a one off visit to see everyone and say hello and see what they were all up to….it’s too far away and too expensive to get there on a regular basis but luckily Emma Williams was also going and kindly offered to give me a lift.
Never one to miss an opportunity……I asked Irene from ‘Making Spaces’, who runs the group, if I could hijack the it for 20 minutes and talk about involvement in research….😊
It must have been about an hours drive there but we had plenty of catching up to do and the world to put to rights, so the time flew by. There’s only a scenic route to the coast so it was also a pleasant drive. We got there in plenty of time to amble up to the bridge and take a picture of the sea peaking through the trees….
Once we got in I immediately saw Liz and after a hug, Liz got me my cuppa – we went round the room and each person said some wonderful comments about themselves and Liz, after seeing my empty cup, automatically got up and got me my second cuppa “as we’ll get better service from Wendy if we keep her supplied with tea” – 😂😂 priceless. I need to have a “Liz’ at every meeting I attend!😊
It turned out I was diagnosed the longest ago, which is very rare….as I’m the baby of my group in York……
They spoke of the opportunity to test the Playlist for life and Book of Life apps – and I chipped in about my testing of them…….
One of the group spoke of the difficulty whilst in hospital around medication – Irene asked if they wanted a pharmacist to come to the group to hear the issues…..great news as pharmacists are so under used and can offer so much more than people imagine.
We spoke of the PIP process – in Scarborough 90% of people presenting with mental health issues are turned down…………😡 I heard some horrendous facts about the assessors from someone that works for CAB – I won’t repeat them as I think I’ll be up for liable….but I was soooooo upset by it all……
It was then my turn to talk about the adaptions I’d made since being diagnosed and also about my passion for research involvement, including Join Dementia Research and all the work with the Alzheimers society Research Network.
“ Research doesn’t just involve drugs trials, people often associate ‘research’ with men in white coats in laboratories and being a Guinea pig for unsafe drugs – it just isn’t like that – Yes, there are drug trials but social and technological research is equally important to those of us already living with the disease, to find the best ways of living with dementia.”
And I ended by saying:
“So next time you’re asked if you’d like to take part in research – simply ask ‘what type’ and don’t immediately dismiss it. Being involved in discovering new processes or the best way of doing something is rewarding and makes you feel as though you’re contributing to possible changes for the good in the future. Your opinion counts”
Couldn’t resist the photo of me and Liz at the end – didn’t want to frighten the whole group by asking for a group photo for my blog on my first visit!
The group only meets for 1.5hrs so it passed all too quickly – maybe they’ll be able to extend it once it gets established as there’s so many topics people want to talk about and it’s such a shame if time runs out before everyone gets a chance to speak…….
The venue was the local theatre, which is a nice place to meet and a great find by Irene, but I was leading on the way out and took a wrong turn so would probably have taken everyone onto the stage……..🙄
A lovely drive out to a lovely new group with loads of potential – now we just need to have a DEEP group in my area…..but then me and Emma are on the case and have a meeting next week so everything crossed……..