Yesterday I was in York for a get together of Yorkshire DEEP groups. Now considering York is quite close to me – only 45 minutes by car…..it is one of the worst places to get to by public transport for an early morning arrival or to get home in time for the last village bus……..Northern rail, in their wisdom have stopped the direct train from Beverley and the bus companies have stopped the early morning direct…….🙈…..considering both are needed for workers, it makes no sense at all…..and makes my trundles very hard.
Anyway, so for a 10.30 start and 3pm finish I had to go by train. The taxi driver picked me up at 7.10 on a beautiful misty frosty day that would turn into summer by midday, such is the confusing weather we’re having at the mo. I was looking forward to seeing my playmates from Minds and Voices, as I missed the last session, but would also be meeting many new playmates from all over Yorkshire🥰
I was very disappointed with the state of the windows on the train so couldn’t get any nice piccies of the trundle🙄………but I passed by the river once I got to York, and that’s always a nice peaceful view.
I ambled to the Priory centre and en route picked up Damian on his bike and then Tommy and Paul from Liverpool! And we were joined inside by Scarborough, Bradford, Kirklees, and Halifax groups so our numbers had swelled beyond belief since the last get together.
Philly, Rachael and Rachel from Innovations started off by setting the scene for today and what we’ll be up to, including the launch of Dementia Enquirers to the rest of the network. ..I sat with favourite things of the day in front of me……..😊
The cartoon is by the lovely Tony Husband showing people with dementia in the driving seat of research….
After everyone said hello Rachael started talking about Our Right to a Grand Day Out project. She showed photos of the grand unfurling of our banners at York station.🥰 it was the culmination of 18 months work from people across Yorkshire living with dementia. Talking about our Rights with regards to transport and how a poor service confine us and how a good service enables us to get out and about as most of us rely on transport, so we have to feel safe.
Scarborough group talked about their Blue Badge campaign for people with Dementia and the outcome is that, once passed, it won’t depend totally on ability to walk but now includes ability to navigate. The proposal is due to come into being in April if Brexit doesn’t delay. It’s a post code lottery once again, as Tommy said they’ve had no problem in Liverpool getting blue badges……..the dreaded post code lottery again.
We watched the film from Bradford FIT group about travelling on buses. The update from them is that change is reeeeeaaally slow…..
Damian gave the update from our train issues and basically when we’re next going somewhere far afield we’re going to hire a coach……..says it all really. Nothing has happened, little has changed……
“You’ve got to get out and about and SHOUT” said Eddie……..😊
I think change sadly takes time, is very frustrating and the one thing we don’t have much of, but at least it’s showing others how people with dementia do have rights……..and do have a voice.
Just before lunch Paul and Tommy spoke about the work they’ve done on transport in Liverpool. Tommy often talks about, how in 2011, when he was diagnosed, you gain a diagnosis and with the other hand, a superpower – the ability to become invisible.
In Liverpool people with dementia train transport staff, buses, ferries, planes and trains. At the John Lennon airport, people with dementia and supporters are fast tracked through the system. It shouldn’t be a post code lottery though.
Rachel Niblock finished off before lunch by talking about the DEEP network and Dementia Diaries. We have groups all over the country from the Isle of Lewis in Scotland down to Plymouth ……the new DEEP Network now has a page for every group. Check it out here:
And so to lunch ……..cuppa tea time……ahhhh…..and the banners went up
Photographer Ian, gave us the dates and places where the banners will be on display.
There are now some new banners, Budding Friends from Exeter and Hope, We all stand Together, from Kent and the Oldham group called the Ragartmuffins who have a motto of Art for one, Art for all. The exhibition will be an amazing sight when they’re all together.
Me and Howard then spoke about Dementia Enquirers with Philly giving us prompts. If people, like Philly, feed me the right words, I’m as happy as Larry and will probably say the right thing. I imagine I said how it will give us the chance to turn research on its head and decide the topic for ourselves. Researchers coming through our doors on our terms instead of us going through theirs on their terms….but we’re not naïve enough to think we can do it on our own. We will need a lot of help but it will be on our terms.
There was much discussion about the questions each group might like answered through their research.
I’m sure there was something else but I appear to have stopped typing at that stage 🙄
In a blink of an eye it was time to leave….but not before the trio of us doing a Skydive a weeke on Saturday had posed for a picture together
I wonder who’s looking forward to it and who’s worried…….🤣😂
It was a very weird today as I thought I would love being with so many people with dementia……so imagine my surprise when I began to feel anxious. I realised I was anxious for those others who were finding it overwhelming. I just wanted to make it right for them and I couldn’t…..😔 I could see one playmate struggling and just wanted to make the pain go away and, of course I couldn’t, until there was a break and we chatted about his time as a policeman, then he relaxed and chatted……..how sad is that……too much stimulation and noise often muddles the world around us. It WAS a wonderful day though.
Anyway, a walk back to the station along the famous walls was just what I needed to calm my banging head and get my final piccie of York with the Minster in the distance….