Dementia Challenge 2015 – Being involved

Apologies before you start reading as there’s lots of words but remember this serves as my memory as well as something others choose to read………but I had such a fabulous day at Dementia Challenge 2015 yesterday. I was able to meet so many wonderful people in person who I normally only tweet. ‘Talking’ instead of ‘tweeting’ was so much nicer – trouble is we could have done with our own conference just to chat! In particular, lovely to chat to Sarah Reed, my fellow panelist, Pippa Kelly and Zoe Harris, brilliant tweeters and Mary from the memory app – we just needed far more time to chat!

I’d had an in ‘interesting’ journey from the hotel….the taxi driver wasn’t having a good day and had just been ranted at by the passenger before me because of the amount of traffic in London, and now, bless him, he didn’t know the way to the venue………I felt this wasn’t the right time to mention ‘the knowledge’……….What should have taken 10-15mins, took nearer 40. I suggested he may be in the wrong place when I saw London Bridge ……’me thinks you’ve got the wrong bridge’……..well we were best of buddies once we did get there after I’d heard his life story so all’s well that ends well……and no, he didn’t charge me for getting lost…

Back to the conference – there were over 200 delegates there and it’s the first time I’ve seen people standing at a conference – brilliant turn out. I think for once that all professional groups were represented. The highlights were:

Professor Gillian Leng spoke on behalf of NICE spoke about evidence not being black and white and spoke of their guidance being released for prevention, clinical advice next month. Overall message is we need far more research as nothing new is in the guideline – what have I been saying since being diagnosed!!

Professor Martin Rosser  – National Director for Clinical research, championed the need for more volunteers and money needed for research, promoted Join Dementia Research (told everyone to Join up!)and spoke of research being social, technological as well as clinical. Click the link below to see mine and Suzie’s conversation why everyone should sign up…….

http://news.joindementiaresearch.nihr.ac.uk/two-champions-discuss-volunteer-dementia-research/

Dr Simon Ridley –Head of Research at Alzheimers Research UK, said ‘it’s going to be everybody’s problem’. Simon also takes the award for the best comment in a speech when He spoke of the hazards of misinterpretations in the press:

Werthers original are eaten mainly by the elderly – the elderly mainly get dementia – do Werthers cause dementia – priceless !!

Sally Warren from the CQC Highlighted the shocking statistic that with regards to Staff:

only 27% of staff in care homes and 56 % in hospitals have an understanding of dementia – doesn’t surprise me but how shocking…………

The main message they want to get across is’ Focus on the person not the person with dementia’

It was then the turn of Nicki Bones from SweetTree Home Care. They were quite a breath of fresh air as this organisation aims to keeps people living at home instead of going into the Care home setting – magic, just what I need. Make note to read up more about them……..

Great talk by Nikki Crowther, Head of Community Engagement, Alzheimers Society,  talking about Dementia Friends initiative. ‘Simplicity is key’ to it’ success. It’s free. I think everyone should become a dementia friend. ……

The Questions and answer session came next and I asked – JDR makes research accessible, what is being done to make research more acceptable and normal? So many people still think Research = Guinea pig. If we were to use the word ‘involvement’ instead of research I think we would have more public buy in…….

Gp Dr Julian Brown spoke about how the NHS could immediately save millions by prescribing more cost effective drugs. For example, Aricept is still being prescribed when Donezipil is a fraction of the cost. He gave many other examples – seems a no- brainier to me!

I then missed some speakers as I got chatting in the Green room to my fellow panelists but then organiser, Katy Edgington, came and got us to go sit in the front ready for our turn. Before us was the moving speech by Frank Arrojo about the role and value of the carer and Anna Gaughan spoke of the work being carried out by Life Story Network.

It was then finally our turn and Tom Wright, CEO of Age Uk managed the proceedings. Because it was a panel it involved the audience as well which was good. My closing points were around Join Dementia Research and the need to make taking part in research ‘normal’ as no amount of money ploughed into research will be of any value unless we have willing volunteers; everyone should make a Lasting Power of Attorney sooner rather than later; and finally, words in strategies and initiatives are all well and good but if they’re not translated into actions, they’re pointless. Obviously we said lots more but I couldn’t make notes on any of it so havn’t a clue what we said -ha!!

All in all a fab day.Great people and great discussion. Made the mistake of going round in the wrong direction again on the tube back to the station so had to get off at Euston and walk to Kings X – remembered that ‘Bank’ was a station to remember but then doubted myself when I saw ‘embankment’…….bad move.Ha! Good job I’d allowed loads of time…..

Award for best slide of the day goes to…Anna Gaughan for stating that the 'Person is the expert in their own lives'
Award for best slide of the day goes to…Anna Gaughan for stating that the ‘Person is the expert in their own lives’
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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.

4 thoughts on “Dementia Challenge 2015 – Being involved

  1. Sounds like you had a really great day, Wendy … and you’re right, there’s nothing like getting to meet members of the community and drawing inspiration from them. (I speak as an Alzheimer’s partner – but it’s been true for both of us.)

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  2. It was great to meet you too Wendy, and again later in the week! Twitter is a fabulous way of sharing information and being introduced to new people, but as you say, it’s not a patch on meeting face to face when circumstances allow.
    You made a valuable contribution to the panel discussion, and as Mary said at the time, that session was the best of the day. Hope to catch up with you again soon. Best wishes.

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