Meeting the Regional Yorkshire Alzheimer’s Team

Last week Chris Rhymes (Lead Research Nurse | CRN: Yorkshire and the Humber) invited me to a meeting with Judith King – Regional Ops Manager for the Alzheimer society in Yorkshire & Humber. The intention was to discuss how best to promote Join Dementia Research (JDR) in Yorkshire & Humberside.

It was a rubbish, rainy day and I got there soaked……….not a good start. Judith was already at Fairburn House so it was nice to see a friendly face.

We discussed what had happened so far with JDR in the area and how Yorkshire had the most sign ups on the web site – yeh! It was then that Judith happened to mention that she had a regional ops meeting with all Alzheimer staff from the Yorkshire area, the very next day! As it happens, I was supposed to go to the Alzheimer Society conference down in London but I’d decided against it due to the tube strike……..not one to miss an opportunity I offered to go and speak to them all about how we can work together to promote JDR across Yorkshire. Chris was also free so Judith kindly let us gatecrash her meeting in York – result! And so nice to be able to meet all the Yorkshire Alzheimer society people.

Judith kindly offered to let me share her taxi back to the train station so we were able to put the world to rights in the cab as well.

So the following day I trundled off to the York Alzheimer society offices at York University – this did mellow my disappointment at not being able to go to the conference – every cloud:)

Everyone made me feel very welcome. It was a sunny day so Judith met me in a dry state instead of drowned rat state…..She started off the meeting by asking all the regional groups to introduce themselves and give an update on services in the various areas.

There were many good projects happening, notably in Sheffield where a post diagnostic care service to help access information, starts in September; Many appear to have a presence in Memory clinics:

sadly not in my area.

Simon Wallace from Dementia Action Alliance was there and spoke about the fabulous work the’ve achieved in Yorks & Humber. 29 GPs in Kirklees area signed up to action alliance; Rotherham signed up first veterinary practice (people with dementia do, after all have pets!!); a builder has also signed up; They’re the most succesful alliance in the country and have a unique opportunity to do more to represent people with dementia.He spoke of bringing together influential individuals with the agenda representing people with dementia.. West Yorks fire service has distributed the Alzheimer’s society employers guide  to 200 businesses and are now looking at sponsorship to be able to deliver more. Sadly Simon is leaving DAA after 3 years and will be sadly missed but he should be proud of how much he’s achieved.

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Alison Wrigglesworth from my own area  – Harrogate york and Selby – has asked me to become involved with a local service review panel. It will be so good to be part of moving things along in my own area – hope actions speak as loud as words.

From all their summaries, what became apparent is they have so much passion and dedication in the Yorks & Humber region.. Sadly what was also in evidence was the post code lottery and funding battles going on everywhere.
Some areas have brilliant services for people with dementia whereas others are struggling.Those with dementia who live in rural areas are particularly hard hit, but Friendship Groups had been established in North Lincs so it is possible to reach out.

It has to become a priority for services to be consistent and available everywhere, no matter where you live.

As with every area of the health service, funding is the main issue. Sadly it’s the people with dementia who are the ones to miss out most when this is a problem. From listening to each region it’s even more obvious that the post code lottery is alive and kicking in this area – very sad.

After their run down, I then told my story and the work I’m doing with Join Dementia Research and how I’d like to work with all of them to enable everyone with dementia and their carers to know that JDR exists and how simple it is to be involved.

I stressed to them the importance of language and how involvement is the key to engagement. Obviously I offered to help if they needed it.

Once I’d finished they asked lots of questions, which is always good and I’d brought in leaflets and posters for them to take away and display in all their services. They also decided how it would be good to get dementia support workers up to speed as they would be able to help all the people they come into contact with as long as they were given the support and knowledge first. However, giving them ‘support and knowledge first’ is key if we’re to go down this route.

Finally we broke for coffee – Alison took the obligatory photo that went on Twitter. Gayle Browne then invited me to speak at the North Yorkshire Dementia Congress in September at Thirsk Racecourse so looking forward to that.

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So nice to finally make contact with York & Humerside Alzheimer staff. Amazingly I’ve never been to the Alzheimers offices in York – mainly because of where they’re situated – a long story – but there appears to be a lot of history around dementia services in York that started before my diagnosis and I’m only just beginning to see the wood for the trees. Anyway it’s nice to finally visit the offices and I look forward to being involved with them in the near future.

 

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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.

4 thoughts on “Meeting the Regional Yorkshire Alzheimer’s Team

  1. Wendy, I love your blog and read it daily. Please tell me about the Friendship Groups that are helping people in the rural areas. We have a similar problem and it is difficult to provide them the education and assistance they need.

    i work for Alzheimer’s Arkansas and aside from our Memory Cafe we don’t have an early stage support group at this time. In the past, we would have five Monday morning education/support group sessions that then would become regular meetings for these participants. We would like to correlate this endeavor in a manner that would research the connection of people living with dementia and their families with others who do not socialize and form lunch groups, etc. Do you have any suggestions?

    Thank you for the positive attitude!!!

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    1. Hi Priscilla

      Love to ‘talk’ to you even though you’re so far away! Over here we have ‘friendship’ groups but also something called ‘side by side’. It works by finding out what activities people with dementia use to do but no longer feel able and then finding a ‘buddy’ to reignite the activity. For example a man might once have gone fishing but no longer feels able to go on his own any more – someone who also likes fishing is given the knowledge about dementia and ‘befriends’ the person and offers to take them fishing. A woman might simply have once enjoyed bike riding but doesn’t like going on her own so the same process happens. It making the community more aware of how isolating dementia can be and working together to include people once more. Hope that helps.😊xx

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