Dementia Round Table at Department of Health

On Tuesday I was due to attend a Dementia Round Table at Downing Street. It was the perfect opportunity to get a one off picture for my blog. How disappointed was I then to receive an email late on Monday changing the venue to the Department of Health across the road from Downing Street. 😔

I was hoping to be here.....
I was hoping to be here…..
But ended up here.....
But ended up here…..

I’d been invited by Steve Bradbury Programme Manager, Older People’s Mental Health and Dementia, in NHS England.

By pure chance it was also the day I was saying a few words at the Alzheimer’s Society Carol Concert in Knightsbridge so was already in London. I’ll say more about that amazing event tomorrow.

Today I’ll concentrate on the meeting. We’d been supplied with a list of 3 topics that were up for discussion:

Greater Manchester Devolution dementia work, particularly in relation to integration
Care home initiatives, particularly the NHS England Vanguard sites
Research, particularly the new treatments.

Gemma and Stuart were on the trip with me as I’d been able to invite them to the Carol concert. The society had paid for Gemma to accompany me so they just had to pay for Stuart. The plan was for them to go tootling round Covent Garden and we’d meet at the hotel after my meeting. We saved the Alzheimers society nearly £200 by travelling from Doncaster as the fares at that time from Brough were astronomical.

Once we got to Kings Cross they left me and I did my usual routine of sitting upstairs and watching the world go by for a while over a coffee and to get my bearings. It was a really murky day. I was a bit early arriving at West Minster so I ambled across the river to have a cuppa in St Thomas’s hospital where they have this amazing sculpture…

Outside the main entrance of the hospital
Outside the main entrance of the hospital

I was met by Steve Bradbury in the reception area of the Department of Health. Once in the room, Alistair Burns thanked me for attending and to ensure I say whatever I wanted – never been one to shy away from being vocal so that was never going to be an issue………..

Alistair chaired the meeting and Big Ben heralded the start with it’s 2 o’clock chimes.

We went round the table and introduced ourselves. There were several people who I recognised including Hilary Evans from ARUK and Charles Alessi –Lead on Dementia for Public Health England, Jeremy Hughes, Steve and Alistair. I didn’t know the others.
Nick Seddon arrived at 2.07 blaming his lateness on children’s parties at number 10……….me and Tom had said to one another how disappointed we were not to get into Downing Street – looks like we were usurped by the Christmas party…..

Alistair started off the meeting by stating that Interest in dementia is still very high. NHS England had had a target of ensuring a minimum of 2 thirds getting a timely diagnosis – Last Friday they achieved that ambition. He stated that

‘We’ve smashed through the diagnosis figures’

My hand went straight up and my comment was that we may have smashed targets but we still had major inconsistencies around the country. Targets should only be counted as achieved if there was consistency in all areas.

Having this meeting with Nick Seddon was an opportunity to keep dementia on the agenda. It became apparent that the PM is looking for innovative ways to keep dementia a high priority. Dementia is still a major focus for the PM but Nick wanted to know
‘How are things changing on the ground?’ And ‘With Vanguard – How has care really changed? Where we should move next?’
Tom Tasker went into more detail about the Manchester project and my input was around the need to be ‘interdependent’ within the community. I don’t want all services coming to my home as that would isolate me – I want to go and meet the services within the community.
There was much talk about ‘What support is needed for people to live in the community’.
Someone mentioned how it’s not all about health and social care agencies as Housing needs to be asked– ‘what are you doing to respond to dementia within the community’ which was promising.
In summer it was announced that dementia would be an early health priority for the Greater Manchester devolution programme. Since then, Alzheimer’s Society has been working closely with Salford Royal NHS Foundation Trust, which is leading this work through the Dementia United initiative.Dementia United aims to improve the experience of people living with dementia and reduce pressure on health and social care. It’s sad that the initiative is just in one area though although I suppose if I lived in Manchester I’d optimistic.

Samantha Jones did a round up of the Vanguards themselves and mentioned the good work being done in Wakefield and Airedale – so close to me but sadly in another part of Yorkshire.
As most people know, research is my passion and this is where I probably contributed most. It was good to have Martin Rosser there.

Martin summed up the situation regarding Research – by 2020, the target is for 25% of people with dementia to be on Join Dementia Research. He said that without NHS England’s support that target won’t be hit.
Identifying people in very early disease to signal why it happens is important. Preventative issues will come more to the forefront. Maybe these are more achievable or realistic?

At the moment we have a fractured service – Memory services and Neurologists must come together.I’ve seen that first hand and am about to experience it first hand again in my new area as I’m passed around services.
What became apparent was the need to find strategies that will attract David Cameron’s attention and give him the ability to galvanise others. We also need something original which will gain the publics interest and make them sit up and listen. Maybe around prevention and dementia risk – managing the risk. It was also good to hear about ‘Corporate responsibility’. E.g Barclays – what are they doing for those living with dementia?

Hilary from ARUK said there still a low % of the population understand dementia as a disease – 80 % with little or no understanding is quite shocking and because of this people will be reluctant to take responsibility if they don’t see it as a disease. ARUK have some really interesting awareness projects in the new year.

All agreed we need further buy in to Join Dementia Research – yeh!
My contribution was around the need to normalise research participation amongst Gps. Tom is a GP who promotes research participation but he’s definitely in the minority.

Nick Seddon summed up the meeting by saying there was a strong theme around research – early detection,risk reduction and prevention. There’s also a need to do a stock take on where we are with the 2020 vision.

I was glad I attended such a short meeting if only to see first hand that dementia was still a priority topic. There were some promising conversations. One that took me by surprise was when someone said that ‘apps’ are a thing of the past……..I’ve only just found out how to use them!!😳

Tom Tasker – the GP from Manchester sounds brilliant and I’d like to remotely access him as my GP as he says AND does all the right things…………

After the meeting I made my way to the hotel to meet Gemma and Stuart and to wait for the taxi to take us to St Pauls Church in Knightsbridge for the evening event – more 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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