Green Paper discussions on Social Care….

Those who know me, know I write my blog in real time, however, yesterday, I did this as normal but on the way home realise what a shambles this had been. ONce again the Department of Health have got the process wrong. So the blog does start off in real time but then on the way home, I deleted the end and wrote my opinion on the process that should not be repeated……..

Yesterday I was invited to my least favourite place….the KREMLIN Department of Health at Quarry House in Leeds.
I’m not very knowledgeable on the politics of political papers – Nigel, Chris and Jayne in Wales are the experts on all this…….however, I knew it was important if I could get there simply to have the voice of people with dementia heard ……whether they’d be listened to, I’m not convinced, but we have to try…….

Anyway, I woke up to loads more snow today as, unlike yesterday, I couldn’t see the road😳
After my usual routine of waking up, I scanned the live updates for the 2 stations I’d be travelling from…….Beverley – trains delayed due to problems at Hull🙈………Hull – trains delayed due to signalling problems but should be cleared by 9am🙏

So then I txt Hannah from the Alzheimers Society, who was already in Leeds to see how things were…..the meeting hadn’t been cancelled and she could hear trains going passed from her hotel window……😂

My taxi wasn’t due until 9.45 so I had time for the blizzard outside to stop and the trains to get sorted🤓 My taxi was mega late, but I’d expected that and always allow 30mins when I only need 15……and my lovely taxi people always know I’ll ring when they’re late and they’d checked my train and although the car was late, so was the train👍

In theory the late train should still have got into Hull in plenty of time, but many passengers stood helpless on a stationary train outside the station while a platform became available……….yup, it was our connecting train that we saw happily pull away without us…….🤦‍♀️ so we had another hour to wait……..

So what do you do with an hour to spare………well I popped across the road to Waterstones in Hull this time and signed a few books🤣

Anyway, back to the day in hand as the next train to Hull was ready and waiting when I arrived….the journey gave me chance to read and make notes on all the papers. It was, in theory, going to be a Question and Answer session and we had been sent the questions ahead of time, so far so good…..the questions were around, Meeting Needs, Planning for the future and Improving the system.

It was amazing how when you cross the Humber you can forget about the snow on the ground…..

But it always looks pretty…..from inside…

I arrived and  met new playmates Pam with dementia and her daughter Joanne who have just set up their own dementia group for young onset near Preston.

Once people had arrived  we started with introductions.
Amelia is working on the green paper on Adult social care from the department of health, Rosie and Hannah from Alzheimers society, Joy Watson, Joanne Roberts and Pam and Cathryn from the dementia and disabilities team at Quarry House

Amelia started off by explaining why we were there and then followed an hilarious 5 mins of trying to get a cuppa tea out of the hot water flask………we didn’t …….couldn’t make either work……no one could………😱😳😱…..the meeting couldn’t continue until I got my cuppa tea so health and safety went out of the window, flask was open and hot water was poured into cups on the floor with the flask open……….

Cuppa tea in hand so first question could happen and was around how dementia affects us on a daily basis – I said how it affects us 24hrs a day, it depends what we’re doing when, how we’re feeling. One size doesn’t fit all.

The system is set up to let people ‘exist’ not live a life…….we said the system needs to be joined up where silos disappear and organisations work together and pool resources.

This is where I deleted the content of the real time content and am now typing on the way home…..

We’d been sent 2 sides of A4 pieces of paper worth of questions. What should have happened was that the people with dementia should have been given the opportunity to meet for half a day in order to recover from long journeys and to feel relaxed before meeting with Amelia.


Joy, Tommy, Paul, Joanne and Pam

We’d been given questions and as people with dementia, we needed structure. We’d each answered our own questions diligently but then it became a ‘relaxed’ conversation flitting here there and everywhere. By the time Tommy and Paul arrived, having been delayed by the snow, they quite naturally needed to start at the first question, which we’d already covered.

There were so many brilliant ideas from all of us. One of the best coming from recently diagnosed Pam, who suggested having dementia clinics in GP surgeries, just as we have diabetic clinics.

Me and Joy

90 mins was less time than a one way journey for each of us………no refreshments, not even a biscuit and as for the tea situation, well that was unforgivable………….

The system is set up to let people ‘exist’ not live a life…….we said the system needs to be joined up where silos disappear and organisations work together and pool resources.

Having experienced this meeting it was poignant to hear Tommy say that there was much discussion in his group in Liverpool around future care and people weren’t enamoured with the propect of what was waiting for them.The ‘one way ticket to Dignitas’ was still a hot topic of discussion as being the only dignified option and sadly I’m in agreement……

My problem with the whole of this is that the general public affected by dementia, don’t know what they don’t know and often are in need of services at crisis point.
50% is healthcare professions lack of knowledge, 50% is also the publics lack of knowledge…
We need to make it normal to talk about dementia……It shouldn’t be a few of us speaking out publicly all the time – it’s bloomin exhausting! We shouldn’t have to ask what’s available, we should be told and supported to find what we need.
I always think ‘maybe this time will be different at the Kremlin……’………I arrived hopeful, once again, I left despondent ……….and they forgot to bring claim forms for expenses………so we’ll have to wait an age for that now…….once again, not good enough…..

The only glimmer of good was seeing Hannah’s enthusiasm, new to the Alzheimers society. She desparetly tried to make the most of a badly organised meeting.

The journey home……mmmm interesting …It started off wonderfully as I shared my taxi with Tommy and Paul back to the station. Much hilarity, much putting the world to rights and a shame we were only together for a short time……..as for the rest of my journey…..it was the same as the morning but in reverse. I missed my connection in Hull homeward this time….It meant I had time to go to the shop for some choccie biscuits for the taxi people as, once again, someone waited around to take me home before they finished their shift……..😍

One event cancelled tomorrow so 2 days at home and so needed…….

 

 

 

 

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.

14 thoughts on “Green Paper discussions on Social Care….

  1. sounds like an exhausting day!! I’m amazed by the amount you do Wendy. I put the BBC news on this morning and there you were! It’s a shame such a lot needs doing in raising awareness…
    Enjoy your well deserved days off X

    Liked by 1 person

  2. Good that there may be a desire to improve things at least. I think that politics works its way into everything, but there’s little appetite from the charities (the stroke charities in my case) to get involved in anything which might be seen as rocking the boat. Hope you got a decent hill to sledge down nearby!

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  3. My G.P. surgery is in Oswestry,Shropshire.I’m a member of our Patient Participation Group and we did a course and received our forget-me-not badges.Two of our members(ex nurses) spoke at local nursing homes about how to deal with people who have dementia.We,also,now have a very successful regular group at the surgery for patients who live with dementia.I agree that this service should be more widely available.

    Liked by 1 person

  4. Oh wow! Yes, you are everywhere at the moment and doing an amazing amount of great work raising awareness and breaking down the stigma surrounding dementia. Well done you. Perhaps its time that Alzheimer’s Society tried to share the work around, as it must be a huge strain on you to do all this work. Great though that you are doing it, and exposing all that is wrong with the policy development processes. Take a well-deserved rest, Wendy!

    Liked by 1 person

  5. Hi Wendy from across the pond,

    It’s very rare that reading your blog doesn’t make me feel better, or at least not as alone, and today is no exception.

    I don’t know why people (i.e. organizers and the medical profession) think that just because we have the dementia diagnosis it doesn’t mean we’re all alike. Heck, I’m not alike from one day to the next, half the time. I get so tired of either being looked at with pity (the poor dear) or looked at like I can’t possibly have dementia — I look so normal after all, and sound normal, and remember stuff…argh!! I think it’s worse when my doctor says he’s not sure why anyone says there’s something wrong with my brain with the memories I have, or family members all but saying they’re not sure what my kids will do with me when I get even worse. I don’t try explaining it all to them, so I usually mutter about not all things being what they seem (when I can remember to say it).

    You’re very brave going out in rotten weather the way you do. I live in Minnesota, where winter is often very cold and very snowy, so I stay in a lot. Also, the flu has been just horrible this year so I’ve stayed inside, crocheted and watched television.

    Thank you for your lovely blog and for sharing it with all of us. What a blessing you are!!

    Liked by 1 person

  6. Hi. I haven’t been diagnosed but I suspect I have dementia. My mom had it. For me it seemed to start with anxiety. Or that’s what I noticed. Anything out of my routine feels like the tangled necklace you spoke of in another post. I get completely flustered and can’t think of the words I want to say. Interesting I still feel quite intelligent. I also feel I can express myself better in writing than talking. It’s less of a struggle. I was wondering if you have felt that way too. Thanks for your blog

    Liked by 1 person

    1. Oh, yes Becky, I can type as though dementia never entered my world, that’s why I concentrate on what I CAN do and don’t dwell on what I’ve lost😊

      Like

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