New National Young Onset Steering Group

I was asked ages ago – can’t remember who by…..whether I would be sit on the new National Young Onset Steering Group. I couldn’t attend the meeting in the autumn as I was already booked for something. However, on Tuesday I attended my first in London.

Tessa Gutteridge from Young Dementia UK organised things for me and Joan, the administrator was kind enough to send me my train tickets and the maps that I needed. The venue was very close to Kings Cross station which was a bonus and a very distinctive building. As always, I’d looked up a picture on google so had that as a reference.It was so striking that I could see it from the train as it trundled into the station.

The distinctive Kings Place that houses the Esme Fairburn Foundation
The distinctive Kings Place that is home to the Esme Fairburn Foundation

Kate Fallows from Young Dementia UK had also emailed me asking if it would help if she met me at Kings Cross. Bizarrely, I find it more stressful to arrange to meet someone than to find my own way there. If I’m finding my own way, I can take my time and if I want to stop and take 5 to get my bearings I can. So I did decline Kate’s offer but I hope she understood my reasoning. I’d met Kate at a previous event but sadly don’t remember so looked forward to being reminded at this meeting!.

It was my first journey to London from my new home and Gemma offered to take me to Brough so I didn’t have to catch the train to Hull first. I could have got a taxi but I just can’t get in my mind where Brough is in relation to my house which is unsettling, hence why Gemma offered to take me there and pick me up so that hopefully it will be familiar next time.

It’s a tiny 2 platform station but all the trains to London stop there. Many commuters travel from there. It has a wonderful little tea/coffee hut which everyone appeared to use and the man is so friendly and chatty to each and every person – even at silly o’clock in the morning!

The train was on time which was a good start. Joan had sent me an email the day before from Virgin trains to say that although it was a Virgin service, it would be an East Midlands train. Good job she sent the email as that would have been really confusing as I would have automatically looked for a Virgin train.

The steering group is relatively new – set up in December 2014 and set up to focus specifically on the needs of those with young onset as services and support is very spasmodic and not available in every area – as I found out to my cost in York. Much work is still to be done, for example on employment and support available for those with young onset dementia. Following on from the steering group, it is hoped to launch the Network in 2016 and to encourage membership widely throughout the country. The definition is:

“The National Young Onset Dementia Network is a movement of people living or working with young onset dementia committed to improving the lives of those affected.”

It’s purpose is to:

“improve the lives of people with young onset dementia and their families by harnessing passion, energy, experience and knowledge.”

More on the meeting tomorrow ……….

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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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