On Friday I was at Quarry House in Leeds as part of the Dementia 2020 Citizens’ Engagement Task and Finish Advisory Group. Some people would be down in Whitehall in London, but when the initial proposal was put forward we asked if it was possible to join by video conference in Leeds to save the long journey down to London.
I’ve been going with the lovely Philly Hare and we’ve both managed to miss the summer meetings due to other commitments. However, we were both attending on Friday so Philly kindly agreed to meet me at Leeds station so we could share a taxi.
It was an early start as the meeting started at 10.30 in Leeds. Buses don’t exist in my village at that time in a morning, so since it was a nice day, I decided to do the long
walk wobble to the station – we’d had such a kerfuffle convincing them to purchase my rail tickets that I thought it might be as big a challenge trying to get my taxi fare reimbursed………(yes I would have got a taxi if the weather had been rubbish, Sarah and Gemma😊) Organisations often forget the challenges faced when participating ……needless to say I brought that up as a point later in the meeting.
Quarry house loomed large as the train approached Leeds……
Philly was waiting for me at the station and we made our way to Quarry house having a catch up in the taxi as we havn’t seen each other for ages. Quarry house is not one of our favourite places as it’s the least dementia friendly on the planet. We were met with an alarm blaring in the foyer, but luckily it stopped as we were trying to escape back outside.
Anna from TIDE – the carers organisation, joined us shortly after.
By the time we got shown to the room the London contingent were already on screen. However we’d been waiting in reception for half an hour in the hope we wouldn’t be rushed so Philly made sure we didn’t start until I was sat with my cuppa tea…….
It was nice to see Matt Murray from the Alzheimers society and Hilary Doxford who is also living with dementia, at the London end. The only other person I recognised was Angela Rippon who is also part of the advisory group. People from the Department of Health and Public Health England also made up the numbers.
Even though the political climate has changed , we were assured that Dementia is still a high priority from Number 10. There’s been lots of ministers moving roles, so it’s vital they get up to speed with the project that Lorraine Jackson so ably left.
David Nuttal is the new deputy director of the dementia policy and will start early October. I’m a tad apprehensive now Lorraine Jackson has moved to another department as I’m not confident in the amount of knowledge of dementia with the new Department of Health people……..Lorraine had gained an awful lot of understanding and experience and now that was lost…….but time will tell.
Our aim is to Inform a review of the implementation plan and ascertain whether it’s making a difference – I think!
The meeting went off at a speedy pace. One thing they need to get right is how to engage with people with dementia and their supporters and what needs to be put in place to allow them to participate.
My initial contribution was adding to the suggestions from the last meeting – around sending the questions out ahead of time to people affected by dementia, to allow discussion and thoughts to be written if necessary – they could get more valuable and in depth answers this way.
More importantly, after my experience today – Making it clear from the start that their expenses for getting to focus groups will be met and they’ll be supported in what ever way is necessary to participate – that certainly wasn’t my experience today.After all, I left the house at 7 and got back at 15.30, so I did a whole shift…….and was only asking for my expenses to be sorted for me…….. Lessons learnt I hope…….
Philly made the good point of us setting the best example of how to include people with dementia – the needs and the process. Others should be able to look at this as best practice..Long way to go…
There was much discussion on the meaning of ‘co-production’ as some clearly didn’t understand the concept. . Matt described it as like building the ark with those affected by dementia as opposed to asking us to look at the design once it’s been finished – I liked that………
The 3 of us in Leeds found it a very frustrating meeting – there was certainly a lot covered but so much that I havn’t a clue what half of it was. Our conclusion was that we hope they saw the need to change what happens currently, because if not we’re simply replicating what currently happens, and that doesn’t work………..
I chipped in several times though, so hopefully I said all I wanted and Hilary did the same.
It was nice to get back home as today had been a ‘slow brain’ day, which hadn’t helped proceedings, but then that’s what they should take into account when including people with dementia………..