A windy trundle to York….

So after Mondays venture to London, yesterday it was the turn of somewhere more local, York. Anna Harrison, Dementia Action Coordinator in York and able enabler at Minds and Voices, had asked if any of us would be willing to attend a meeting of the York Dementia Acton Alliance Steering group. Well normally I’ll leave this to local playmates, but numbers of those available seemed low, so I agreed to tag along. No one with dementia was on the Steering group so we had to put that right and Anna made this possible…

After yesterdays travel escapades, I wasn’t sure whether bus or train was going the be the right mode of transport. The bus over the Wolds in windy weather is a bit of a wild ride, yet the trains to York the day before had been cancelled 🙄…….so I looked at all the timings and decided to gon on the first village bus which would get me into town to see if buses were running and if not, I still had time to trundle to the railway station to see if the trains were riunning…..🤦‍♀️…things we have to do when we rely on public transport…….I knew I’d have to rely on a train back as the buses are awkward after 2pm to get back to the village…….🙈

Anyway, the village bus pulled into the bus station at the same time as the York bus was arriving, so that made my mind up…..although the bus driver asking if everyone had brought their sea sickness pills wasn’t reassuring…but very funny…😂🤣

We hadn’t been out of town long when the bus was being buffetted around in the wind…maybe it hadn’t been one of my best ideas to sit upstairs but that’s where the best views are!….but at least it was a sunny day as we passed the racecourse…..

I began to see what the driver meant about sea sickness pills…….as sitting still in your seat wasn’t an option…..we passed the usual sights of the llamas in the field, munching away at the grass with their winter coats keeping them snug, the windmills having no problem generating power today as they spun round like the clappers, the flooded farm land after all the storms of late and tractors going about their business no matter what the weather…..

90 minutes later we arrived in York, shaken built not stirred ready and noticed the rain that had started was now falling as snow 😳 with the 2 foreign tourists going wild with excitement ….hopefully just a passing shower….because I had time to spare, I stayed on the bus until the station and then trundled to the warmth of the library, the affect on river levels of the recent storms very much in evidence…..

The meeting was all about the current situation in York around services for people with dementia and the way forward so really important. Often at these meetings you find many don’t turn up, but Anna had had so much interest that we’d been moved from a small room into the main hall, which sounded really promising…..Anna had txt me in the morning to see if I needed any support but I knew this venue well in Priory Street – very dementia appropriate venue…

After warming up in the library, I trundled my way through town passing the river on the other side, with the famous riverside pub once more deluged by the Ouse ….and the whirlpool I mention in my book clearly in view….

I arrived at Priory Street to find playmates had made it!!! After hugs, a cuppa and lunch…..we started chatting while we were waiting for the last 2 to arrive. The issue cropped up of those in couples –  “What happens to the person with dementia when the partner goes into hospital…?” Something that’s often not thought of until the problem arises…………the emotion both men showed when talking about this was intense. Eddy showing the guilt he felt as someone living with dementia, and Eric from the point of view of the care partner. The emotion welling up in both these men as they spoke about the pressures of living as a couple when affected by dementia.


Playmates Eddy, Elaine and me with Elaines hubby, Eric

Anna and a few other were there. Also there was a blast from the past, Emily Abbott, who used to be our ‘able enabler’ at Minds and Voices when I first joined…….she now works at Health watch……but lovely to see her and have a hug…..Damian was also there, so just like old times …❤️…..I always remember feeling very sad when Emily left us….

Once 2pm arrived, Steven Burkeman, chair for the day, started off. We all introduced ourselves. There were people from York Hospital, Joseph Rowntree, the Council, ‘Well Being’ service, a Commisoner for Services, Dementia Forward, Solicitors, and of course, Dementia Action Alliance.

I was able to ask if people minded if I blogged and if I took photos. The formalities of the minutes from the last meeting were gone through first……

Cognitive Screening Resources was up next – the tests the medical staff have when looking at the possibility of dementia…….Sonia from the hospital asked some people present to name as many animals as possible, (something we’re often asked to do)showing the stress this can cause when timed…….I always find that hard. The average is 25, but 11 is also acceptable. Sadly mine is always less.  What is normal one day might not be somebody’s normal on another day……So imagine doing the test in hospital, a stressful environment already and you can see the problem.

She then showed the new sensible way to measure confusion – showing whether the confusion is different from their normal state. So they’re actually looking for delirium……

Some are now realising that the usual tests of knowing the date, remembering an address and the normal memory stuff is not a good way to recognise dementia….we spoke of the futile tests we have to do…..the question ‘Who is the prime minister?’ …if you’ve never been into politics, why would you suddenly start taking an interest and know……….?

Anna brought us up to date on the latest stuff from DAA. The local fire brigade are keen to promote their home assessment for people with dementia. York now has link workers who socially prescribe ….and for dementia, social prescribing is key and maybe they could promote Minds and Voices….🤔

The commissioner from the NHS was up next talking about the Strategy for Dementia in the Vale of York. York is the 7th lowest in the country for diagnosis rates…..😔….

The expected number of people with dementia in the Vale of York is around 4.5 thousand yet there’s only around 2500 people diagnosed according to the numbers. There’s a lack of understanding around the value of being diagnosed. Gp’s themselves don’t understand the benefits of diagnosing….the criticism by GPs against York is for not having a clear pathway when they diagnose so they’re now working on a Strategy but not a new strategy as the money isn’t there. So instead they’ll look at what they already have and utilise the good bits to find out what’s needed and what’s missing. We went round the table to give 1 sentence from each person on what should be a priority….

My one sentence became a few items…..Not a timely diagnosis but an accurate one, not just setting targets for diagnosis…….  not being abandoned at diagnosis…..when we get the diagnosis our family get the diagnosis too. Making it known what is out there – we don’t know what we don’t know. There can be a million good services out there but if people diagnosed don’t know where to start or where to look, then those services are wasted.

Many good sentences came out of that one bit of the meeting to inform Sheila from the NHS Commisioning body…….

Sheila then said that she was organising a gathering of 250 GPs focusing on dementia….and we all immediately came to life and said, ‘Let us at ‘em…”😂🤣

Anna and Lissa from the DAA then spoke about a mapping exercise day, where what is available is mapped, and evaluating what’s out there and where the gaps are. I suggested each service providing data on numbers and success data etc ……

Carl was the next on the agenda….firstly talking about an app called House of Memories for people with dementia. Objects or photos from the past  can initiate conversation with people with dementia. It’s currently been used in Liverpool and is coming to York in April to be made available in December …..

Carl then went onto Age Friendly York, a worldwide initiative through the World Health Organisation. Then ‘Your Time’ from a leisure persspective and how easy it is to access those activities.  What’s the experience of those moving from work to retirement and the issues……..so really ‘Age Friendly York’ should be ‘Friendly York’ as Steven said……

Anna finished off with the Blue Badge Issues in York for people with dementia…..only people with severe dementia are the ones likely to get it……so more action will be taken…..I spoke about the Post Code Lottery that exists once more as some areas interpret the guidelines more realistically than other – York being a poor area.

It was an exhausting meeting as soooo much came out of it and Sheila from the Commisioners actually said it had been the best meeting she’d attended in ages….so now lets see actions come as a result of all the good words spoken for the people of York…..as Anna said on a txt to me this morning…..

“ It feels like a turning point in changing hearts and minds..”

Let’s hope so…..the passion to change was certainly in abundance today…..

 

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

5 thoughts on “A windy trundle to York….

  1. That was certainly a productive meeting! So glad you survived the “seasick” bus ride and got to participate. Good idea about mapping the services; we need that here in the US too. Doctors are woefully under-informed. I had seen pictures of the Ouse river after the storm, and wondered if it was near where you used to live in York. Didn’t know about the whirlpool , though! Thanks for the picture.

    Liked by 1 person

  2. Sounds like the issues that we face are global. I have often made the same point as you, that early diagnosis is important, but there needs to be more education in order for accurate diagosis to be made and that both are pointless unless mapping of services are available. We are currently pushing our government, here in Australia, to recognise these issues.

    Liked by 1 person

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