Policy Think Tank meeting in London……

Yesterday saw me trundling back into London for a meeting of the Policy Think Tank organised by Steve Milton and Philly Hare from Innovations in Dementia.

The group consists of other wonderful people with dementia who all want to see policies and opinions change for the better. Steve and Philly facilitate the meeting.

The day started off very drab and drizzly but by the time we trundled past the Humber the sun was desperately trying to show it’s face..

Steve had kindly sorted out all my tickets. The venue is the Joseph Rowntree Foundation offices next door to the secret squirrel building at Vauxhall (MI6😊) Their website provides a wonderful map and simple instructions – big brownie point.

I arrived to find lots of my friends ready for a hug and Steve asking if I wanted a cuppa – perfect start:)
After a catch up and bite to eat the meeting began

We spent the first half an hour going round the table finding out what everyone has been doing locally, nationally, internationally and globally

Chris, Jayne and Nigel talking about all their work with the Welsh assembly. Peter talking about his work with Dementia Action Alliance, Hilary is part of the World Health Organisation, Larry, with all his work in Oxford and Jennifer and her work with NHS England.

These people do so much more nationally than me and are true campaigners whereas mine is more awareness in a different way. I often feel a fraud in the company of these folk as they’re so much more knowledgeable on government policy etc.

But we all know that issues, both at high level and local level are equally important. They’re very different but equally important, no matter how big or small.

In the US, they’re wanting to shift the meaning of the word ‘dementia’ to refer to the later stages only so much discussion followed.  A lot of that is because of the insurance model they have over in the States.
It has started to creep into the UK.Larry told us of his CCG now adopting a middle diagnosis – Mild cognitive impairment,  moderate cognitive impairment and dementia.I’m not sure whether I approve of it going that way………….seems a way of denying those in the early stages from obtaining support…….

It was then Professor Peter Mittler who spoke about the UN Convention

Peter is a font of all knowledge on all things rights based and never ceases to amaze me. The knowledge is something I just can’t retain, but I’m behind him 100%.
2017 is the year when the UK finally comes up formally for assessment before the UN. All eyes will be on the UK and its treatment of people with any disability.
They have to respond to lists of questions by the UN and by us through people like UK disability rights.
Peter is at the House of Lords tomorrow with Philly at the launch of the report.

August is the month when the UK will be given a grilling in Geneva.

By the end of the year the UN will give the detail of how badly the UK is doing for people with disabilities, including dementia.

This Human Rights year is a golden opportunity to make a point.

Peter gave me a brilliant quote to use:

“If we don’t reach for the stars we’ll get the dregs”

We then had some discussion about funding for the group, and a discussion on the 3 nations dementia working party.

The danger with the big national groups is that they become seen as the voice of people with dementia whereas we all said that people at local level are just as important.
We want to keep going as this year is so important due to the UN disability rights work.

It all got a tad intense and vocal so Philly called time out for a tea break time……phew, I had a headache when I arrived, so it simply continued banging away……..as we’re a lively lot…..😊

After a much needed cuppa Philly lightened the afternoon .

British institute for human rights are running a twitter campaign #alrightwithhumanrights and we all had our photo taken with different messages we came up with…..

The motley crew all living with dementia…..
And now with everyone….

I’m not sure if anything else happened after that as my brain switched off and before long it was time to go home. I had the lovely company of Peter, Chris and Jayne to the tube station and we all made our weary way home.

It was so nice to see everyone and a great way to recharge enthusiasm…….

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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.