Challenge on Dementia 2020: Putting Words Into Action…..

Yesterday I was in London at the above event. It was held at ‘Rooms on Regents Park’. The building looked very familiar and I had a similar picture on my iPad from a previous event so me thinks I must have been there before!

It was another wet and very dark morning – I had to catch the first train of the day at 6am 😳-so early that even the lights weren’t on in the station😱. I think it’s the first train I’ve caught where all the seats were reserved apart from a few in the rear carriage, but to be the first on was very surreal. The bonus of travelling on Hull trains to London was that at least the tea was Yorkshire tea……..😊 AND there’s free wifi all the way, so I was a happy bunny….I’d also forgotten what a ‘fast train’ was……….

I was asked to do 2 short talks, one in the morning session on ‘Why is dementia a priority’ and another in the afternoon, “Progress on improving dementia care, support and research’.

Dr Sophie Edwards did the usual housekeeping stuff and was Chair for the day, before introducing Dr Charlie Davies, Managing Director of UCL partners Academic Health Science Network opened the event by setting the scene.

Followed by me. I ended by answering the initial question of why dementia is a priority by saying:
“Something that effects so many people in so many ways must surely not be ignored. With the retirement age increasing so will the problem of supporting people to remain in work or not. The cost to the economy will continue to rise alarmingly as the ageing population increases. So to ignore would surely be foolish. Surely finding ways to support people with dementia and researching effective ways to prevent the disease in the first place would be far more cost effective that having to fund the crisis situations that will inevitably arise if we choose to ignore its existence.”

Then came Alistair Burns national director for dementia – to talk about what has been achieved so far.
One thing that stays in my mind was all the talk of doing things ‘well’ – Preventing well, diagnosing well, Supporting well, Living well and Dying well…

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‘Well’ is the key word and I tweeted that this needs to be a consistent practice across the country which isn’t evident at the moment.

One lovely slide from Alistair was around Dementia dogs being guide dogs looking for a new career – love it…….

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Acosia Nyanin – Head of Inspection CQC – was next to speak. Key them that came out of this talk was that quality of care is variable – “Variable “ standards seem to be a key consistent theme……

Dr Doug Brown – from Alzheimers society – spoke about the current work of the Alzheimers society. Key point of Dougs talk is implementation of good practice found through research must be given a priority. He also highlighted a study which had shown that dementia can develop 10 years or so before the onset of symptoms…….

Dr Harwood – Clinical Lead of London Dementia SCN – Consultant psychiatrist mainly in the care home sector. He spoke about the situation in London. He spoke of the variable diagnostic rates in the London Boroughs.  We shouldn’t be pushing people to have care pathway but we should at least give everyone the option – everyone is individual. His was a very good talk.

The theme of ‘variation’ seems endemic throughout the dementia world………’variable’ diagnosis rates, ‘variable’ services, ‘variable’ standards, variable waiting times for memory clinic…….

It was good to talk to people over lunch and look in more detail at the wonderful art work being done by CreativeConnection.co.uk. They were putting into pictures everything that was being spoken..

You might just see me in the middle.....
You might just see me in the middle…..

The afternoon however turned decidedly sour. I was due to open the afternoon with a talk on research involvement, however, I was forgotten ………..😔. It clearly said me on the programme…..

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but the Chair,  must have felt that someone with dementia speaking in both the morning and afternoon was too much for anyone so decided to move straight onto Pier Kotting (who did his usual wonderful job). I wonder what the more eminent speakers would have thought to being missed out – Ooooo but of course they wouldn’t have been omitted would they……….Not even an apology from the Chair after the event….I went home sad and disappointed and felt as though I’d been party to tokenistic inclusion ……….
Being involved has a positive impact on your well being, I’ll leave it to your imagination to imagine how being forgotten makes you feel…….

 

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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.

7 thoughts on “Challenge on Dementia 2020: Putting Words Into Action…..

  1. You paragraph “Something that effects so many people in so many ways must surely not be ignored. With the retirement age increasing etc… and ending …if we choose to ignore its existence” is a very powerful summary argument as to why dementia matters and government needs to give it the appropriate support.

    Liked by 1 person

  2. Disgerefullbehavure from’Chaire’ hope he is following yr blog.
    At least apologise , make sure this never happens again.
    so
    So sorry Wendy.
    Your professional approach to diagnose like me is. Positive and we give Professionals. So muchknowledge . Apoligyisleast he can do

    You Sr. Wonderfull. Xx🌷🌷🌷🌷🌷🌼

    Liked by 1 person

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