So yesterday I headed down to London…….once again, we’ve not been told not to travel and until we are I’m hoping it’s business as usual and yesterday was part that….morning on, afternoon cancelled…..but it would mean I would get a trundle and get home far earlier than I was expecting so every cloud……..Sooo many events being cancelled that I’m having to make the most of any still on…….obviously if I didn’t feel well, I wouldn’t put others at risk, but I felt fine, I don’t care about me getting it from others…
Someone kindly managed to get me a pocket size hand gel sanitizer so I was all armed to make everyone else feel happy….just to make you all fell happier, every time I think I used it I’ll put “(gel) in the blog 😂 A Gp on Twitter had even offered to send me some in the post! How kind was that ☺️
I was heading down to meet up with the lovely people from Young Dementia UK to discuss the Angela Project…….The blurb about it says…:
“The Angela Project is dedicated to Angela who was recently diagnosed with dementia at 51 years of age. She had symptoms for 3 years before getting a confirmed diagnosis. Many other people experience delays like Angela.
Our Aim is to improve diagnosis and post-diagnostic support for younger people living with dementia and their caregivers”
So a wonderful project, and I actually think I was a participant in one stage…🤔………
I’d been emailed from Tessa, who heads up Young Dementia UK, saying how it was fine not to attend if I was at all worried…….well, if they were going so was I 😂…….and as Tessa said after my response:
“I thought you might think like that……..”😂
Anyway, I woke to a beautiful light morning…
First time I’d noticed how early it was getting light! 6am and the sun was shining….how wonderful….Spring is on its way..
A lovely cheery taxi driver was early and said how she’s just sent her friend a txt, then realised how early it was 🙄 oooops….(gel)
The earlier train was also in the station. I had to change at Doncaster, so I thought I might as well sit on Doncaster station for a bit longer so wobbled on(gel)…….I’d have an hours wait there instead of 15 minutes, but would trundle on a nicer train with ‘tinternet’ which would allow me to sort myself for the morning……
After all the recent dull grey rainy days it was lovely to see the sunshine again. It always makes me smile, Mr Blue sky setting you up for the day…..seems ages since I’ve trundled past the windmills and how beautiful they looked………can’t remember when I last went to London, must be a while…🤔
I’d had a debrief with my daughters about the trauma of the PIP assessment the day before and we all agreed there was nothing we could do now but wait. But it’s amazing how the thoughts of it flicker in and out of your head……😔
I was determined the day would be a nice day as I would be seeing such lovely people.
I arrived into a sunny Doncaster, got a cuppa (gel) and sat in the waiting room (gel), playing scrabble, winding my brain up for the day, and watching the people come and go…….(gel)
After an hour, which flew by, I boarded my train (gel) and arrived in London late as usual ….🙄 (gel gel gel )
So I was a little late but after a short tube ride (gel gel gel gel 🙄)still found time to take a piccie of the skyline…which I love around Aldgate….
I arrived at Dementia UK offices (gel) and found Tessa, Kate, Janet and Jan waiting for me……and a cuppa tea appeared…..we were soon joined by Hilda (CEO of Dementia UK and who kindly lets us use their offices) and Jackie….
Jan started…..I’d been least involved and was invited to tag along today to give my five penneth of views…..the project finshed at the end of December ….so now they’re busy producing academic papers…so we were here to discuss the next stage, collaborating to think about how we can turn findings into useful resources that can make a difference in practice…make a difference to the diagnosis process and the post diagnosis process….
This first leaflet is accessible and available for professionals and people affected by dementia…but it’s just the start as so much useful information came out of the Angela Project that we need to ensure it gets out into practice…you can download a copy via this link:
We need to make sure it gets far and wide……so please have a look….Kate had it on her laptop, so I took a quick piccie…..
The ‘organiser extraordinaire’, Kate, has produced a check list for making sure the process runs smoothly….so we’re working on a promotion plan via the Young Dementia Research Network….
We were talking about the cost associated with providing hard copies free of charge and where that money would come from….dissemination and implementation is sooooo important in research and often neglected. But we’re wanting to make sure all the useful information collected IS disseminated and implemented ….
We need to be efficient as possible but time and resources are always limited and Young Dementia UK is very small but perfectly formed and so good at what they do….
We moved onto to discuss other resources other than the leaflet currently available……we want to produce a ‘living care plan’ or ‘living life support plan’ – don’t think we’ve got the name quite sorted yet….…..Clare Mason at Bradford has been consulting professional people, to see if they would use this living care plan or what would need to change – do they think it would be valuable, what would they like to see come out of the evidence that has come out of the Angela Project ? So for example, their local Bradford Dementia Strategy Group were very keen to trial it, made up of many different specialties………. But then also ask people living with Young Onset dementia too…of course!
I said it would interesting to see what professionals thought we needed as opposed to what people living with dementia say they need…..
We all said it had to be a flexible template to be adaptable for every individual….so we have to have a core range of essential elements…that can then be adapted for individual needs….
The experience through the clinic, is another step – what matters most to people receiving a diagnosis…….?
It’s wanting to link a gold standard clinical diagnostic process along with a personal, ‘what matters to us’ during that process…it’s no good providing a step by step clinical process on diagnosis if it doesn’t involve the holistic experience of the people being diagnosed. Is the environment right, is the right language used etc etc……
They’re also wanting to produce something for Commisioners ….so over the next 9 months there will be much activity…….very exciting times and the evidential outcomes of this project could make such a difference and change the whole experience of being diagnosed, and then post diagnostic care, which is very poor at the moment. However, during the research, some people did relate to having had a good experience. The areas they came from didn’t surprise any of us….so it’s harnessing these gold practices with “what matters to people going through that process’ – how magic would that be……
Lunch arrived (gel) and I found out that I misunderstood the length of the meeting …..there were people Skyping in after lunch but I had to leave as I’d booked my taxi in Beverley to pick me up from the 2.30 train 🙄………but it was sooooo good to get out and about on a train once more and down to London….
I realised on my way to the tube station that I’d not taken a piccie of all the lovely people🙈,,,so took a piccie of the blossom in the sunshine instead
I had to find a smiley face at Kings Cross station as I was originally booked on the 17.30 train. But the smiley face took me to the next train, warning me that they hadn’t been very co-operative lately 😳…. it was an earlier train so would have been cheaper and less crowded than my rush hour one….so why wouldn’t they in my little mind..?
She waited with me, then the guard appeared. She explained my situation, I smiled my biggest smile and made sure my lanyard was on view. They couldn’t have been more lovely and helpful and I settled down on my earlier train to home (gel gel gel)………sometimes kindness costs nothing yet means so much……
A lovely trundle to be with lovely people….wonder when the next will be as 3 days have already been cancelled next week….🙈……
p.s did I use enough gel for everyone 🤔😂 especially my daughters…🙄