Minds and Voices meeting with Healthwatch

Just a reminder that my blog is my memory – hence why I’ve written this from yesterdays meeting……….

MInds and Voices is my local forum set up by Emily Abbott and Damian Murphy. Emily kindly agreed to pick me and Damian up from opposite my house. Damian was saddle sore after an amazing charity bike ride from Cambridge to York over the weekend. The ‘John Wayne’ walk suited him………..:)

There was about 12 of us with dementia meeting with Sian, the Manager of Healthwatch. The aim of Healthwatch over the next 2 years is to work with people living with dementia to make people lives in york better – raise awareness and taking practical steps – most of these changes will make York a better place for everyone to live. Two years is an awful long time in dementia world but sadly change takes such an inordinate amount of time. Hopefully we’ll be able to identify quick wins along the way…..

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The meeting eventually started after we’d all caught up and had a cuppa and a biccie – always a good start to any meeting……

The aim of this meeting was to talk about getting out and about and transport in York. Sian started off by saying:

“For anyone who remembers, I’m Sian and for anyone that doesn’t I’m Sian………..” magic!

and not STAN as Eddy had read on her name label. ………needless to say, Sian was STAN for the rest of the meeting………

We were meant to talk about transport but in true dementia style, we got sidetracked, went off on a tangent and somehow started talking about chemists!………….

Emily then took the wise decision to write a list on the board………

The lovely Emily Abbott
The lovely Emily Abbott

So we got back on track again and started with Taxis…… I think we were all in agreement on the fact that those that are friendly are friendly those that are miserable are still miserable…..Customer service is just as important for taxis as anywhere else. If they provide good customer service they’ll be good for any group to use.. However, a few extras were added specifically for people with dementia – namely:

Taxis should be on time for people with dementia who may be anxious and wander off if it doesn’t arrive on time.
Shouldn’t drive off until we’re safely inside in case we get side tracked, but also to make sure they’ve dropped us off at the right place as we may not be able to help ourselves if dropped off at the wrong place. There’s a company we use for the forum who always get lots of business as they agreed to dementia awareness sessions a couple of years ago – we were saying that we need to use us as ‘secret shoppers’ every year to make sure they keep their drivers up to date. A token one off training session should not mean companies should be entitled to display the dementia friendly sign indefinitely…..

Buses came next – our park and ride don’t stop every stop – which confused me no end when I got on the wrong number one day. Mr ‘Jobsworth’ of a conductor refused to stop the bus until I was in town. That would have been horrendous if I hadn’t been comfortable finding my way back again………Many buses in other town have automated announcements re the name of the next stop – we all thought that would be a good idea here for us but also for all the tourists! Again, another example where good customer service would benefit all – so much is unrelated totally to dementia.

Trains was along similar lines – someone suggested there should be a tick box when booking to say you have dementia and may need extra help but once again, having good customer service would solve all that. Signage in train stations could be a lot better.

Community ‘Dial a ride‘ services – some said these were fine but had very restricted availability times due to volunteers not working evenings. We all agreed that dementia awareness sessions should be compulsory for any volunteer working with people with dementia. Currently it’s optional ………grrrrrrr 😡…….

Driving is a very grey issue. None of us were sure who is responsible for stating whether we should be driving as it seems to be left in our hands…. – there’s nothing definite – physicians ‘advise’ you – ‘I don’t think’ you should drive – but it doesn’t say you can’t drive – many peoples’ perception of whether they’re safe could vary enormously – there’s no consistent approach to how you demonstrate you’re fine to drive……..

I asked for ‘walking‘ to be included. This was mainly to get over my point that emergency vehicle sirens often seemed to be switched on unnecessarily. Some have passed me on an otherwise deserted road, with sirens blazing, not approaching a junction, so why have the siren going. Sirens hurt my ears and many other people with dementia…… Someone said that they’re often due to training in York, but unnecessary usage should be considered……

Green men crossings – some have no sound; some don’t allow enough time to cross…..If they were set correctly they would benefit all sorts of groups of people. Healthwatch are working with blind residents as well as disabled so was going to combine the voices of each group . Emily then came out with the statement:

‘Many mickle makes a muckle’

which none of us had heard of but means using more people to get over a point……!!

At least all this gave Sian a starting point and there’s probably lots I missed as I was too busy talking to type……..:) We also, did seem to get sidetracked and going off on a tangent but somebody always brought us back on track again…..many communities appear to be ahead of York – another example of inconsistencies around the country….

Next time it will be pre diagnosis, diagnosis and post diagnosis services – me thinks this will take more than one session………😊

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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.

2 thoughts on “Minds and Voices meeting with Healthwatch

  1. Hi Wendy, my father in law is in advanced stage of dementia now but my wife was concerned 10 years ago when this was at an earlier stage as to whether he was fit or not to drive. NHS Lothian offer a driving assessment carried out by a specialist occupational therapist at the Astley Ainslie Hospital in Edinburgh. My father in law was assessed on a simulator and in his car and was advised to cease driving. As the therapist put it . “your father has been driving for many years and stopping now he does so with an unblemished record”. Drivers also need to consider the Insurance Companies attitude if a person has not reported a diagnosis of dementia. Perhaps NHS in York have a similar facility?

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    1. Thank you Charles – it sounds like you have a very good scheme in your area, sadly not in York. Whether services are available in your area seem to be a bit of a post code lottery I’m afraid. It would be so good if services were consistent:)

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