Yesterday saw the first of 2 days in London with the Alzheimer’s society. Thankfully the torrential rain of the day before had disappeared briefly and the day was very different and thankfully dry for the short walk to the venue. I’d found the venue the night before thanks to a lovely shop owner who came out in the pouring rain to show me.
I got to the venue and immediately spotted the lovely Jane Cotton who then sorted me out and then Hilary, Keith and Rosemary soon arrived and we were shown into the quiet room to meet ex BBC Breakfast man Bill Turnbull who was due to interview us on stage.
We were miked up and had a test run with Bill Before the room started to fill.
Bill Was the compare for the day and got the event started…
Jeremy Hughes was the first speaker of the day.
This is the biggest conference we’ve ever had, uniting all sections of the society, including research. We’ve achieved so much in the last 5 years, more than ever before. We still have third of people undiagnosed with dementia. This wouldn’t be acceptable with cancer so why is it acceptable with dementia, said Jeremy.
Rob Burley was then introduced by Bill – the Director of campaigns for the society talking about the largest consultation ever undertaken with people with and about dementia.
Of the findings 56% said if they were diagnosed they would feel their life would be over.
Ben Page Chief Exec IPSOS Mori then spoke of the challenges his company faced undertaking the work. The depth they went to ensure full inclusivity.
It was then our turn to launch the new DAA ‘We’ statements.
We had a nice red sofa to make Bill feel at home. The five of us on stage were Sheilagh, Alex, Joy Keith and me. My statement was the last:
“We have a right to know and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.”
Luckily my twitter friends provided a photo
The 5 new rights based statements can be found here:
Hilary Doxford then did a brilliant job launching the Three Nations Dementia Working Group of which we all happen to be members.
Prof Bart De Strooper, Director of the new UK Dementia Research Institute was next. He spoke of the world wide problem of dementia.
He showed the 6 universities who will contribute expertise, but it’s also important to use all expertise around the country so I hope many more will be involved.
The future looks bright – wish we had a remote to fast forward.
Next up was a cuppa tea. Someone kindly got me a cuppa and the chaos made me escape to a quiet room before it was time for the first break out session:
“Integration: Health, Social Care and Housing: Opportunity or threat for people affected by dementia. Rob Burley director of campaigns introduced this session.
Viccie Nelson was a physio in Australia and is now Programme Director Care Home Vanguard Sutton.
Vanguards are test sites to test new models of care.
Viccie spoke of The red bag scheme, which is a transfer bag people take with them when they go to hospital. But this will only work if the hospital then uses it and the ward looks in the red bag, which, from what someone said in the audience, doesn’t always happen.
Hazel Blears followed Viccie about Greater Manchester Devolution – dementia united delivering transformational care. Manchester is the only place to have an integrated care budget.
Hazel spoke of her mum being admitted to a care home in an emergency being able to eat and drink, when she came out a while later, she could do neither. From all the stories I hear a care home would be my worst nightmare – there has to be an alternative. We have to put more resources into keeping people happily living in the community if this is their choice.
Jeannette Leach from Rochdale finished of by talking about Dementia United and it’s 5 pledges – To improve lived experience, Reduce variation, Key workers, Co-Production and Technology adoption……
All this is wonderful for those who live in that area. The post code lottery of wonderful work is a huge problem for me. The fortunate few are hugely benefiting but the rest are lagging behind further and further.
Lunch was very nice but it was vital to find the quiet room again as the noise had got to the roaring stage and was really unpleasant. I wanted there to be a ‘pause’ button so I could freeze the room and wander round to see who was there as so many people were saying hello through twitter and there were so many familiar faces that I wanted time to see everyone.
Final part on Monday…….including what happened when the 3 main political parties were held captive to answer questions………and my question to them all………..