On Monday I went to a meeting at the Department of Health – Quarry House Leeds – nicknamed ‘The Kremlin’.
The meeting had been organised without much notice from the Department of Health and I’d been invited by Damian Murphy and Emily Abbott from our Minds and Voices Group in York. Eddie Flory (also a person with dementia) was also in our group.
The day started very early as we’d arranged to meet at York station at 09:30.
We’d been asked by the Department of Health to look at 14 priorities for dementia care and prioritise them………….that’s all we knew. ……..
Looking through the 14 options on the train, it became blatantly obvious that this was going to be rather a challenging exercise as it would be based solely on personal opinion and that would be influenced by your own circumstances.
What would have been better is for them to give us a blank sheet of paper and ask us to list our top 3 priorities. Admittedly, this would still be based on personal need but at least it would give ‘our’ priorities and not what others think should be the priorities.
However, it was what it was and we discussed and ranted accordingly on our journey there😊
We got to Quarry House – a most unfriendly place and not at all dementia friendly (I really would have thought, of all people, the Department of Health should set the standard for others and should be the first to be dementia friendly!) No obvious signs in view for the toilets; very confusing entrance;not welcoming; the guy who came to show us to the room raced off ahead thinking everyone could keep – we went up several flights of stairs without him asking if people could manage them. The room was very undementia friendly and poorly lit. I was sad and disappointed before we even started the meeting….
It was good to meet Jean Tottie from Twitterland – a plus point!
Peter Watson, whose wife has vascular dementia and Lorraine Jackson, Deputy Director of the Department of Health led the meeting. Their key task is to manage the implementation of the Prime Ministers Dementia 2020 challenge. Peter Watson is on the Dementia Programme board –
I asked whether there was anyone with Dementia on this board. No one is on the board with dementia – Lorraine highlighted that they’re now considering that. Again, I felt total despair.
They immediately went into the meeting when I raised my hand. I wanted to know who the other 20 people in the room were…….everyone was then given the opportunity to introduce themselves. Once again, I was sad to find that only 4 people in the room had dementia…….6 people were professionals and the other 10 were carers or former carers. That doesn’t seem a fair balance of views in my opinion…
Wendy Sharp (living with dementia) highlighted that the pictures on the 2020 vision booklet were all elderly and people from the BME community highlighted that there were no diversity pictures either. Lorraine did acknowledge both these points and had taken note of already and fed back.
Lorraine then explained why we were there – to recommend commitments and ways the strategy can be implemented. There are 4 elements to the Vision – care & support; awareness; research –drugs and cure – (sadly didn’t mention social research); risk reduction (i.e. managing with other conditions/lifestyle that may positively affect their chances of getting dementia)
Need to focus today on Care and Support
She stressed that they must consider finer detail – such as age, ethnicity ,gender, rural/urban etc and how these might have an influence. Has to work in any part of the country –especially in rural communities where transport may be an issue or just getting to Gp is a challenge.
We were split into groups for the discussion – 4 groups – but all kept in the same small room…….. we had Wendy Sharp and her supporter Louise with the 4 of us from York.
We needed to decide on the top 3 out of the 14 – Damian did the feedback form. Very poor room as I couldn’t decipher the conversation as too many people were in the same room all talking at once. I just felt so confused and wasn’t able to contribute as much as I usually do. Luckily we’d written down much of our feedback on the train so Damian had most of the words all ready. Although we said we didn’t agree on having to choose 3, choose 3 we did, just so we fed back something that was relevant. Our top 3 were:
- 1. “Better support for people with dementia and their carers following a diagnosis”
– Needs to focus more on needs of the person with dementia as it currently focus’ on carers – need peer support – age appropriate respite – support for people with dementia at work –
– Need post diagnostic buddy system
People with dementia able to live independently in their own home longer – needs to be interdependent within the community so as not to isolate.
It’s not the dementia that causes the suffering it’s attitudes and others perceptions
- 2 . “Improve waiting times for diagnosis” – no post code lottery – issue is about lack of awareness
‘You’re working too hard, you’re depressed’ ‘why would you want to be diagnosed’
- 3. “People with dementia able to live independently on their own for longer”. However, it should be down to the person with dementia to define what that looks like. Everyone would have a different perspective.
Someone commented at the end as everyone was leaving that ‘we were making the most of a bad job’………should this be how it is? I left feeling sad and dejected. It was very shocking and sad to be part of such a shambles of a meeting organised by the Department of Health.. It was confusing and not dementia friendly. I left feeling as though it had almost been a paper exercise – they needed to consult, so they had to have us in a room to be able to say this….. they missed a golden opportunity to do the job properly.
As Jean Tottie said during the meeting, we need a mechanism for meaningful, continued engagement – this sadly wasn’t it. Peter also acknowledged that we need these sessions planned and need more time to organise.
Quote of the day has to go to Wendy Sharp who was diagnosed in her 40’s with dementia. She was asked by a doctor:
‘How come you’ve got dementia?
Her response to this most ridiculous question was:
‘I was lucky I won it in a raffle’………………..