Yesterday I headed down to London for a meeting with the Young Dementia UK Network. Very apt, as they’re the people I raised money for doing my Skydive😊.
The silly o’clock start began well with both the taxi and trains on time 😳……but sadly I couldn’t take piccies on the London train as the windows were covered in black speckles…..very inconsiderate 🤣 but it was a very grey start to the day and the piccies would have been grey……not my favourite colour…….😊
However the guard cheered me up no end by saying Hull will be the first to get the new Azusa trains in May😳 – of course, I will believe it when I see it …….as we’re currently trundling in one of their oldest bone shakers……..🙄
The added bonus today was I would be meeting up with usually virtual buddy, Professor Pat, who I havn’t seen for eons but we talk all the time by email☺️ So instead of giving her a virtual hug, we’ll get a real one instead. At one point Pat txt me to say her train had just left Doncaster. I txt back to say mine was running on time, then looked out of the window to see where we were…….mmmmm, my train had just left Doncaster………could we actually be on the same train 🤔🤣
I arrived at our meeting spot and soon after Pat joined me……I’m sure we were on the same train – ha! We had time to spare for a cuppa, catch up and selfie 😍
Before the main meeting we had the research network meeting with Pat, Jan and Janet about our research conference in Sheffield on 24th June. Keep the date free if interested!
We have 20 places for people affected by dementia, 20 for researchers and 10 for the extras. We had to go through the programme, confirm the speakers and timings, the ubiquitous funding and agree when to throw it open to those who want to attend….very exciting…..
Once we’d finished, people started to drift in and we started on lunch…..amid catch ups and hugs…….I bored everyone with the photos from my Skydive…..😊 we had lots abscent due to illness and other commitments so there were lots of gaps around the table.
We had Mark, the new Director of the charity in Berkshire – Young People With Dementia – as a visitor.
Peter started off giving us an update from the Dementia 2020 board. Young Onset dementia only came on their radar as a ‘minority’ group which spans all other dementias in 2018. Young Dementia Network is leading on the project looking at various issues, such as support, and all this has to be completed by 2020. Peter believes we can influence changes in diagnostic tools and reporting of data. We can achieve recommendations for best practice for ‘Support’ but we can also continue with this issue long term as it’s so important.
Dominique along with Tessa spoke next about what the Network had set out to achieve, to enable nationwide improvements in the services and support available now and in the future. So we focus on policies and practice and influencing locally and nationally at all points including those affected by dementia.
Tessa showed stats that included 77% of people who joined the network want to influence support and information following diagnosis. We now have 2200 members and want to reach 3000 by September, people can be passive or more active…….so anyone with an interest in Young Dementia Network can find out how here:
At the moment our 3 workstreams are Understanding and Awareness, Research and Evidence, and Diagnosis and Support.
We could have many many more, including employment, finance, end of life, but it’s capacity that limits our choice.
Tessa finished off with a quote from me:
“It is so refreshing to be involved in a Network that concentrates specifically on our needs.
We’ve done a lot but there’s a lot more to do”
And boy have we done soooooo much…..
Our brain cells started working on possible ‘what next’, ‘how to get more people involved’……and many suggestions were flying around the room.
Janet spoke of the gap that exists between the ‘Cure’ world and ‘social care’ world in dementia. The ‘cure’ world, working in laboratories, often forget that ‘people’s lives’ are involved.
Mark then spoke of the programme in Berkshire for individuals with Young onset dementia in the county. Why they do what they do.
However, I was now in slow down mode and the combination of typing and concentration was becoming difficult, so I just had to listen…….hence no notes…🙄
Brownie point of the day went to Kate who supplied me with my very own Potta tea……..😍