Ahead of the game in dementia: sharing good practice

Last week I was asked to speak at an event at Elland Road football club in Leeds being run by Yorkshire and Humberside Clinical Network entitled “Ahead of the game in dementia – sharing good practice”.

I enjoy going to events like this as it gives me a chance to meet healthcare professional who I wouldn’t otherwise meet.

I’d been asked by Rachael Litherland from DEEP to share the stage with her for 25mins , our session being entitled  ‘Reflections of people living with dementia’. DEEP is a fabulous organisation that, through their work, enable people with dementia to have a more powerful voice through numbers. My forum, ‘Minds and Voices’ in York is part of DEEP, like 50 other similar groups around the country – more can be found at http://dementiavoices.org.uk

The day had an interesting mix of high profile speakers and the ones I like most, the ‘real’ speakers, who have real experience or are speaking about a real project that has brought about real change in the community.

In the morning we heard from Professor Alistair Burns, National Clinical Director for dementia at NHS England. I have quite liked listening to him in the past but he did blot his copy book this time – he spoke of the changes needed and changes being made and challenges etc etc but at no point spoke of including people with dementia.

So, when the chance came at the end to ask questions I put my hand up before anyone else had a chance to get in there 😊 and asked his opinion on including those who could provide the most insight – those very people with dementia!

He quickly back tracked and said that was without question and the reason for excluding it from his speech was because it was a given – but he graciously  also said that was a typical politicians answer. I knew perfectly well that he advocated inclusiveness but he didn’t say it and I felt it important that those in the audience who didn’t ‘include’ as a matter of routine when developing new services should hear someone at that level say those words. Anyway I was able to make my point……so I was happy.

Me and Rachel were on first after lunch. Rachael spoke a bit about DEEP and importance of listening to the voices of people with dementia and then handed over to me. I spoke about my story and then some of what I do through various organisation, particularly my passion about research and the need to change the way researchers recruit to enable more volunteers. I spoke about ‘involvement’ being key. Some clinicians have said they don’t want to diagnose early  as there’s no support service available – my response is:

‘Not to diagnose early doesn’t make these people with symptoms disappear – we need early diagnosis to identify the numbers in order to improve services!’

We finally had a question and answer bit which is always good.

The bits I enjoyed most about the day were in the workshops. These were opportunities for groups to present projects that had actually happened. It’s all well and god hearing lots of good words about what’s needed but bureaucracy leads to so many delays and it’s refreshing to hear the good news ‘we’ve actually done this’ stories.

Three worth mentioning (apart from the wonderful DEEP workshop by Rachael, of course) are firstly the social media workshop: here Vanessa Garity and Alex Irvine spoke of the effect social media has had on their personal development at work, particularly through Twitter. Twitter had enabled them to exchange and hear the views of people they wouldn’t normally have access to. I met them through Twitter, so always nice to meet people in person! They also gave lessons in the lunch break:)

Secondly, hearing how someone from British Transport Police has brought in new practices at York Railway Station. She was a magic speaker – so animated, so funny and with exactly the right message. She’s rolling out awareness to all transport police. I was so impressed by this project that tomorrow’s blog will go into more detail.

Finally a project about Sandal Library in Wakefield and how it had been redesigned to be dementia friendly (and therefore people friendly). The bit that impressed me was a TV room they’d created with comfy chairs and a big screen with a loop of 100 photographs of pictures from the past of the local area…People sat in there and experienced 45 minutes worth of nostalgia – simple yet great idea.

Another great day.

As I say at the end of all these things – everyone was saying the right words but words need to be translated into action. The 3 workshops above show how change is possible if the people who are in a position to make change make it happen.

The slide from Alistair Burns that said 'include carers and familys' but should have said 'include people with dementia'!!
The slide from Alistair Burns that said ‘include carers and families’ but should have said ‘include people with dementia’!!

 

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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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