Event at Whitehall – Part 1

Person Centred Dementia Research – Building our future

I’ve split this blog between two days as I have so much I need to remember and lots of nice photos from the event.

Nichola Verstraelen from the award winning Lancashire Care Team had asked me to talk at their celebration events months ago and last Monday, the day came. She also invited the wonderful Warren Branton from Hull who is a carer for his wife who has Alzheimers.
It was decided that our bit would be an interview ‘Parkinson style’, which was a nice change. It would also get the perspective of carer and person with dementia which was brill.

It was an early start, which is a struggle these days, but I knew it would be worth it. The journey went remarkably smoothly with all the trains and tubes behaving themselves perfectly. The venue was easy to find as it was just down the road from the tube station in Whitehall– always helps. When I got there I was met by lots of people I knew from Twitter and some had heard me speak elsewhere and came had said hello which is always so nice, even though I don’t remember!

Nice venue!
Nice venue!

We were taken through the maze of Whitehall corridors down to the Old Library where Nichola was waiting – it was so nice to see her again as it really was months since we organised this. The wonderful Claire and Michael were there from #whywedoresearch fame so they immediately had a hug. Then came Warren – it’s ages since I’ve seen him too! He’s also a Join Dementia Research Champion and we were both involved in the launch of the database. Chris Rhymes from the Yorkshire & Humber Clinical Network was also on our table –  I’m due to meet with the Yorkshire and Humberside Regional Alzheimers Society Ops person with Chris later that week.
The room was full – we were given wifi access so Twitter was at the ready – we were using #lancsdemres if anyone wants to check out the tweets

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Heather Illes Smith opened proceedings and spoke of advances in community acknowledgement of dementia – but still a long way to go.
She also spoke of the on going challenges regarding the lack of discovered treatments.She reminded the room about the James Lind Top 10 research priorities alliance worked with people with dementia, carers and practitioners and the conclusion was for a need not only to look at cure but how to live with dementia. Many more areas require research investigation – person centred care being the key priority

Lancashire Care Team talked of working in partnership – the need for networking and shared practice to enable a more joined up approach.So many are working in isolation.

Award winning Lancashire Team!
Award winning Lancashire Team!

‘Coming together is a beginning, keeping together is progress, working together is success’

They encouraged others to go for awards, just like they did, as it’s a good experience and highlights good practice.

Next it was the turn of #whywedoresearch team!! Michael Keeling and Claire Gibbs – they spoke of social media being a tool to be embraced – health care organisation were reluctant to see the value from a professional angle and they did too originally yet they soon found it enables connections with both professionals and patients (that’s how they found me!) and share passions which cross geographical boundaries.They have ambassadors all over the country and the world.
#why promotes all research across all areas but dementia research can be enhanced by the use of social media.It’s brought it out into the open.

Claire went through their history by unfolding a’blue peter’ style banner – brilliant! Reached Australia on 2nd Jan and had 8 million impressions on twitter by Feb with children also getting their voice heard. Such a fabulous, yet simple initiative that I’m passionate about and am their first public ambassador!

The story so far of #whywedoresearch
The story so far of #whywedoresearch

Part 2 tomorrow

 

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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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