Project involvement at Durham

Yesterday I travelled north for a change, to the lovely city of Durham as I’m on the advisory board for a dementia project there. It’s an Action research project involving patients, carers, providers and commissioners of health and social care in Durham. ‘Co-designing dementia care to improve value” It’s being led by Dr Mara Airoldi (University of Oxford, Blavatnik School of Government)

The day started very damp and grey and wasn’t helped by my taxi being 15 minutes late😳. Luckily, for once, the first train was also running late🙄. Luckily the second train from Hull to York was on time but the tea machine had broken in the café😱…….so I had to wait until I got to York for my cuppa…….then when I got to York, no time to get my cuppa as it was very confusing as there were 2 trains both going to Edinburgh via Durham at the same time…….😳both running late…….so I got on the first to arrive, which turned out to be the wrong one to coincide with my seat booking…..hey ho…….
As we started to approach Durham, the skies brightened and I even saw a glimmer of sunshine ….

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I couldn’t for the life of me remember any detail about this project when the email came through, but this is so often the case when I’m part of a project group which only meets a few times a year. By the time the meeting comes round again, I’ve forgotten the group exists and the purpose of me being there even though I have vague recollections of the venue and people, but that’s usually because I’ve taken a photo. You may wonder why I continue to be involved in an advisory capacity. The reason I keep going is simply to understand their progress and to ensure someone with dementia is part of the group to give feedback.

“This project aims to develop practical strategies to improve care for those living with dementia and their carers that increase value without increasing costs” – a challenge that every authority faces. It’s looking at current dementia care services in County Durham, developing quick wins, using ideas from the very people who use the services and possibly innovative local ideas and then assessing and monitoring the impact on costs and effectiveness. We all know there is no extra money available but how can we meet the needs of people with dementia better with the resources available. I can only imagine that I’ve got involved with a project in Durham because Professor Jan Oyebode from Bradford is on the board. So she may have asked me….😊

Jan was waiting for me at the station along with Mara and Ciara so we shared a taxi to the venue. Lunch was waiting for us when we got there, which was nice, along with the much needed cuppa tea.

Once everyone had arrived Mara started off the meeting

It’s called “Co-design” as it’s working with those who run services and the recipients, although I noticed that only service providers and Carers were present at the first workshop.We had the usually discussion around the use of the word ‘carer’ and the carers at the workshop preferred the word apparently. I wonder if the same would have been the case if people with dementia had been present and they’d have asked them for their view as it’s often the people with dementia who don’t like the idea of loved ones being renamed their ‘carer’….. The Alzheimers society was contacted to help identify people with dementia who might attend but no-one attended which is very sad and disappointing. However,Professor Jan reassured me, in her part of the presentation, that over the summer they hoped to interview more people to gain their perspective of services – 24 people with dementia and their supporters; who live in different settings and include people of all ages at all stages – perfect:)

The group is made up of academics, local commissioners,me and people with a specialty in dementia along with the researchers. It was interesting to hear their thoughts and very interesting to see the plans afoot for the next stage.
I pointed out, the outcomes so far were very unbalanced due to the lack of people with dementia at the first workshop. When only supporters are present you can’t help but get a slant on what they need, which is often very different from what people with dementia need……

It’s an enormous task that they’re undertaking, but the locals seem on board, and receptive to change and ideas which is half the battle……..

I look forward to hearing how they’ve got on interviewing people with dementia at our next meeting…….when I’ll once again, have to remind myself why I’m there…….

It was positively summer like when I arrived back at Durham station – the weather had changed from the damp grey morning to a lovely sunny afternoon. However, one thing hadn’t changed…..the trains were running late……..😔

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The Westwood and its roaming cows was a lovely welcoming site as we trundled home – I had the luxury of Gemma picking me up from the station which is always a nice end to a journey………

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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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