Meeting at the Department of Health in Leeds

Yesterday I was at Quarry House in Leeds – Headquarters for the NHS (nicknamed the ‘Kremlin’ by many). I was there with Philly Hare, Steve Milton and Jayne and Chris Roberts. We were representing DEEP groups around the country with the aim of convincing Lorraine Jackson from the Department of Health’s Dementia Policy Team and Raj Kaur who is also part of the policy team, the advantage of consulting with DEEP groups (groups attended by people with dementia) around the country with regards to the Prime ministers 2020 vision. Alistair Burns was also due to dial in.

I’d had a ‘meeting’ there with Lorraine Jackson before that was dreadful – very poorly organised; very unfriendly for anyone so it didn’t hold many good memories……although I had done a webinar talk to NHS England staff there, which went well. So Lorraine had much to do to do to improve my experience this time.

It was a lovely sunny day and the timings meant I could catch a bus from the village instead of getting a taxi. The Westwood buttercups look amazing this time of year.

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Sunday hadn’t been a particularly good day and this morning I woke with the same fuzzy, fluffy brain. I was hoping that fresh air and sunshine would work its magic……….Most people talk of a ‘bad hair day’….I have ‘bad head days’………🙄 My typing isn’t affected even on these woolly days and long may that remain the case, but it does demonstrate the complexity of the brains workings ………

The Kremlin Quarry House loomed large in the sunshine as the train approached Leeds……

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We only had an hour to put our point across so we arranged to meet at a café near the station before the meeting. I was the first to arrive as I’d left with plenty of time to sit and watch the world go by. Philly joined me soon after as did Jayne,Chris and Steve.

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We arrived at the Kremlin Quarry House in time to be greeted by Mr Miserable on reception..However, James who showed us up to the room had a smiley face and was chatty. Lorraine Jackson and Raj were already there waiting with a cuppa and Alistair Burns joined by teleconference. Raj has been tasked with getting the Citizens panel up and running.

After brief introductions Lorraine spoke of the fact that we were here today to talk about how we take forward the citizens panel.
First step is to get it underway – no fully set out plans yet so the perfect time to meet – before they make the wrong decisions!
Our aim was to remind them what DEEP has to offer.
The Task and Finish advisory group, which Philly has been invited to next week is to help scope what the Citizens panel might look like – who should be involved and it’s key purpose.
They want to include a variety of ways in which people can contribute.
Key aim – they want to be giving the program board people’s experiences in every day life and ask them if what there is doing making a difference.

There is currently only 1 person with dementia on the task and finish group and 2 carers.This smacks of tokenism so we said there needs to be at least 1 or 2 more people with dementia from a DEEP group. Jayne also suggested the need for a new carer on the group so they have current, essential experiences..

Chris highlighted the need for a National pathway for people newly diagnosed. Alistair said each area is different and so there’s a need to support a local pathway. However me thinks he and Lorraine missed the point. We don’t want to stifle innovation, but what we do want is a baseline pathway that at least does away with the postcode lottery that exists at the moment whereby some areas have brilliant services and others have none.

A single voice from people with dementia is ludicrous as it’s usually all the same people who speak out so DEEP is perfectly placed to supply that resource of people from all ages, ethnicity and gender.

I said they need to have a visual map of where those contributing are from to ensure every type of background and area are represented.

The key attribute of each DEEP group is that each has a facilitator. Steve could send each group the same questions to discuss locally or to find out if there is there are people interested in being consulted. Me and Chris said that for some members the DEEP group was the only place they felt comfortable talking because no-one judges them. What an amazing resource for the Department of Health.

Linking with dementia diaries is another valuable resource as it provides another way for people to feed back their views.

The Department of Health won’t have another chance to interact with so many people from such diverse backgrounds. I just hope that listening turns into action and results.

Fab photo taken by Jayne after we'd finished...
Fab photo taken by Jayne after we’d finished…

The 5 of us went back for a cuppa and debrief afterwards. We were quite pleased with the way the meeting went but we realise there’s still such a lot of work to do. Just looking at the paperwork for next Tuesday showed they hadn’t considered people with dementia. The notion that every person with dementia is individual deters organisations making changes as they see it as an impossible task but we do have similarities. Each individual brings with it their own personality and experiences but there are many myths around specific symptoms only being relevant to specific dementias. If only we could document the conversations we have with one another around common experiences…………….But for all, the main one is the stigma attached to dementia no matter which dementia you have.

For once my train journey went well…….but my head was still all over the place when I arrived home. Hopefully tomorrow will be a better day……….

It seemed an appropriate way to start Dementia Awareness week……….

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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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