User Involvement Board – Alzheimers Society

Last Monday I was down in London for a meeting of the User Involvement Programme Board Advisors at the Alzheimer’s society. I’ve been having real problems of late booking tickets and travelling in general so wasn’t looking forward to it. However, it was an important meeting to attend as we were meeting with Jeremy Hughes to put our thoughts together re the new society strategy and discussing how our role should move forward.

Laura was brilliant and booked my train tickets for me and due to the long day, Matt kindly agreed for me to stay overnight. However, it’s normal for most people to stay the night before, but my problem lies in the early start and late home arrival, so I asked if I could stay the night after, otherwise I’d be leaving home in the early hours and getting home around 9……😳. So it was nice to know I wouldn’t be making the journey home the same evening.

The journey was actually an uneventful one for a change. I can’t remember when I last had a train journey that went smoothly! – Perfect start to the day.
The weather was lovely on the journey but changed as we pulled into London and was dull and dreary – typical! The temperature on the screen in front of me said 13 degrees😳 – check calendar – check month……..

I hadn’t appreciated the difficulty when you have a suitcase and stick – so where’s my 3rd hand for climbing up and down stairs and sorting out the ticket barrier….😳luckily kind man carried it down the first lot of stairs……note to self……maybe still only take stick when second hand is free………

I arrived at Devon House in plenty of time and was met by Laura with a much needed cuppa tea…..Laura scored a BIG gold star for the whole day as there was constant tea available………perfect😊

Many wonderful people with dementia were there – Keith Oliver , Hilary Doxford, Shelagh Robinson, Daphne Wallace and Chris Roberts along with their supporters. Just can’t believe I didn’t take a photo of us all……😳😔

Shelagh told a wonderful story of the name her 5 year old granddaughter gives to dementia – she calls in ‘fizzyhammer’ – how wonderful is that. We said we all need to call it fizzy hammer……

The lovely Matt Murray joined us, followed by Tim McLachlan (Operations director for London trying to make London the first dementia friendly capital)and Jeremy Hughes..
Introductions were made and we were off…..
Jeremy highlighted the transition over the last decade for the society from supporting carers to supporting people with dementia as well.
The new 5 year strategy comes into play next April. ‘A better and closer engagement with people with dementia’.and with people who are living with dementia who currently don’t have a voice, which is the challenge.
There would be a strong input by people with dementia with the board of trustees – this is where the ‘virtual panel’ will come into play.
Whole strategy is called a New deal on dementia

Much discussion was had between us where we highlighted issues and desires to Jeremy and we’re confident he listens.

After lunch,Matt asked us to say what we think has improved and I said how, even in my short time, the society asks our opinion far more. More inclusive but still a long way to go.

There was a strong consensus of the need for all organisations to WORK TOGETHER – be united and not have all these different competing services.

We spoke of the importance of including people with dementia in everything that’s done locally and nationally – if we’re involved from the start from the interview, then it will become normal to involve us but if we’re not included from the start it becomes a chore or difficult.

Senior policy officer – Martina Kane then spoke of the ‘I’ Statements and see if they’re fit for purpose. They can be seen here
These statement are under review to be updated and many views will be sought using DEEP groups as well as other methods of contact, which is brilliant.

Hilary and Chris then spoke about the thoughts around the National Working Groups for People with dementia. The society has no working group – other countries do, including Scotland which has been in existence for about 14 years.

Hilary and Chris went to Scotland to see how it worked there. Anyone diagnosed in Scotland with dementia is offered a membership into that working group.
It’s a ‘go to’ group for professionals and services –an all encompassing group, all ages and stages, minority groups and geographic inclusivity. Virtually, by email, face to face, FaceTime, – any method of contact will be available. It will allow anyone anywhere with dementia to be involved if they wish to be – magic and very exciting times ahead.

We had so many ideas and comments throughout the day that we ran out of time. My head was banging when I got back to the hotel, but it was such a good meeting. So good to hear others have the same thoughts and issues as myself. Matt is the perfect person to carry through all these ideas so the future is looking very exciting for people with dementia……..

St Katherine's Dock looked lovely....
St Katherine’s Dock looked lovely….if only the sun had shone……..:)

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.

3 thoughts on “User Involvement Board – Alzheimers Society

  1. I know what you mean about sticks and suitcases! LOL! Perhaps it might be worth trying a folding stick? Then you can fold it and put in your handbag when climbing stairs with a case.

    Really enjoying your Blog, try to Tweet a link each day, though have missed a few recently as we lost our internet and phone on Saturday. Turns out farmer had managed to cut the overhead wire while tractoring something. Luckily OpenReach came out Sunday morning (very unexpected!) and fixed it.

    Best wishes from a caravan in a field in Bwlchtocyn (we’re on holiday), Maggie


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.