DEEP Policy Think Tank

Friday saw me trundling off to London for the DEEP Policy Think Tank. This was a group set up to include people with dementia with an interest in changing and advising on policy. Some of my wonderful friends are part of this group, including Chris and Jayne Roberts and Keith and Rosemary Oliver. So I knew it would be nice to get a hug from them after a rubbish few weeks.

I’d arranged to meet some other people beforehand to save 2 journeys so it was an early start on the first train of the day. If it’s a clear day the early start always leads to some amazing sky as the sun rises and the world wakes up. It’s my favourite time of day….and today it was a lovely misty morning….

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It was of course, Remembrance Day, and the chaos that is London, respectfully stood still for 2 minutes.

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I got there to be met by Philly and Damian and a nice cuppa along with lunch. I soon got my cuddle from Chris and Keith. It was wonderful to finally meet Professor Peter Mittler, who is living with dementia and a wonderful international speaker on rights and dementia. I also finally met Paul Thomas, who is the DEEP co-ordinator for the northern hemisphere.

Steve Milton kicked off the day talking about the engagement meeting with the department of health for the 2020 vision. Some of us had a good experience, but others, like myself, had a mixed experience. In London they felt supported whereas, in Leeds, it was quite a challenge at Quarry House.

However, we all felt it important that we write to the Department of Health so that something is written and we’ll then put something together, as part of this groups role, to create a document around involvement.

Because our group is quite large and the people within it quite vocal, Philly had brought along cards to hold up to allow everyone a chance..

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We also spoke of the huge success of the launch of the Rights booklet produced by Philly with help from us all. Philly was the lead author but we all fed into this – it was anything but tokenistic inclusion. It was launched at Dementia Congress in Brighton by Keith and Philly and at the Disability Rights UK conference by Larry, Peter and Philly.
The document is the beginning not the end. We’ve also got the great document below

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We’re not ‘grateful’ to be heard anymore, we have a ‘right’ to be heard.

I was then asked to talk about my PIP experience and whether we would take it further in order to put pressure on for change. I said:
It appears that people who live on their own are penalised. I was turned down because I’m able to use apps and alarms to remind me to do things. The fact that I can easily ignore these alarms and forget to take medication seems to them to be irrelevant. If I lived with someone and they reminded me that I’d ignored the app, that’s classed as needing support and meets their criteria….Same goes for travelling
I thought this is meant to be an ‘independence’ payment not a ‘wait until you’re much more dependent’ payment! As someone said to me recently……”

I felt really bad for not taking it to the next stage, especially since I’m part of this group – I’m sure the others were silently hoping….; but I couldn’t face the demoralising process and don’t want to be brought down by them, especially when someone contacted me to say they’d won their appeal and the DWP had taken out an appeal against the appeal! More on that tomorrow…..

UK is not thought of highly with regards to disability rights and this process is simply one of many which highlight this.

Peter filled us all in on what has been happening on the international scene around disability rights and dementia. He spoke of Dementia Alliance International.
Peter is so knowledgeable on all things rights based that he led the conversation on the UN Convention and how dementia fits in – Peter spoke of ‘planet disability’ and ‘planet dementia’ – human rights is often forgotten in the dementia world. The convention is 10 years old and dementia hasn’t been involved at all. There’s no evidence that any government is including people with dementia in their rights. Only now is the UN starting to listen. Convention on the rights of persons with disabilities are now listening to people with dementia.

So after a tea break, we finished the meeting by discussing the way forward and how we might go about putting the group on a more sustainable footing. We’ve achieved so much in the short time we’ve been meeting.

• We’ve managed to get member involved in the task and finish group of the 2020

• Co –authored the Rights guide
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• Made direct links between dementia and the disability movement.

So the fact that the group has been effective is in no doubt but we now need to decide where and how we go now. DEEP can’t fund this very expensive group for ever. Maybe the group could become independent, but as Larry said it’s difficult for us, as people with dementia, to sustain independently and we very much rely on the directors of DEEP to enable us to do what we do.
We spoke about our vision to become ‘change agents’, as Peter called us.
Or ‘gentle irritants’ as Larry said. Our ultimate aim is to influence policy. We represent ‘dementia’ not people, not countries, we simply represent dementia.

So nice to see so many friends but once again I forgot to take a photo of everyone😱 so the last one I took was of the view from our room onto the Thames looking past the MI6 building which stands next door…….good job I hadn’t noticed it before or I would have spent all the meeting looking out at the view below……..
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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.

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