User Involvement Programme Board meeting

Yesterday afternoon I was in London at the Alzheimer’s society’s User Involvement Programme Board meeting.
I don’t like going down to London anymore as the journey is long and can be stressful, so I’m picky on what I agree to attend now. It just so happens that this week both events were in London.
This afternoon I was due at Devon House in St Katharine’s Way near Tower Bridge. I always arrive early and, if the weather’s nice, I always sit and watch the world go by near the Thames.


The lovely Matt Murray is currently out of his Research Network management post and in the Engagement and Participation managers role, so it was nice to see him there. Laura Venables had kindly sorted out all my travel which made things a lot easier.

Involving people with dementia in everything the society does is key to its future success, which is the reason for me agreeing to come down to London today.

There are about 12 of us who take it in turns to attend board meetings and today it was the turn of me and Rosemary , who is also happens to be part of the research network. We sat and had lunch with Matt and Laura, in order to go through all the papers beforehand, which was lovely.

The Programme board consists of people from all directorates. For me, this is also key as everyone, no matter what directorate they sit in, should have the involvement of people with dementia in the forefront of their minds when designing anything. People affected by dementia should be involved from the start as opposed to the end of a process. Co production is key. Being involved from the start is ‘user involvement’ and not from the end, which would be a ‘service user.’

Brett Terry is Director of people and organisation development – chaired the meeting

Matt started by celebrating user involvement achievements so far – the organisation is waking up for people with dementia to lead the work across directorates in partnerships. We’ve a long way to go but It’s come a long way even in the short time I’ve been involved.
I do have a soft spot for Matt as he was the first person I had contact with after I was diagnosed and looking for some way to be involved. The Research network was my first introduction to the society and my main passion.

They spoke of asking people affected by dementia what activities they’d like to be involved with. I said they were missing a trick in ‘asking’ for activities. Many people don’t know the wide range of involvement opportunities. They might think they’re not capable of contributing. For example, many wouldn’t tick being involved in the ‘media’ as they may think this means being live on TV or that they’re just not capable. People who are diagnosed often lose confidence in their ability and this needs nurturing. The society could ask what skills they have or had and then use this information to match them with opportunities. If they lack confidence, provide a ‘buddy’ or peer support – find out about the person and match make and nurture. I’m forever saying:

“Everyone has a talent, you just need to help them find it”

The society is aiming high on user involvement – they know they havn’t got it right in the past but are trying to embed change and have the involvement of people with dementia at the top of the agenda which is good to hear.

They really seem to be trying to think of different methods and solutions which is refreshing and have taken on board that consistency around the regions is key. This centres around communication. There’s no point in saying at Devon House that people with dementia should be involved in, for example, assessing the route of a memory walk,if this doesn’t translate to every office.

I seem to have stopped typing quite early on in the meeting but think that was probably due to concentrating on the paperwork and speaking so I can’t remember any more detail but it felt a very positive meeting. I came out thinking that actual change will happen. The new branding and strategy will hopefully change people’s attitude to the society, which is often negative in some areas. It has some wonderful people with some great new ideas for involving people with dementia and that can only get a gold star in my eyes….

The hanging baskets in St Katherine's Dock looked lovely in the sunshine...
The hanging baskets in St Katherine’s Dock looked lovely in the sunshine…

On my journey home I was in a carriage full of young schoolchildren, weary teachers……and me…😳……I love children….for a little while…..they were going all the way to Hull😱

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.

2 thoughts on “User Involvement Programme Board meeting

  1. Hi Wendy, I have been reading your posts for quite some time and very much admire your determination and hard work. I am 71 and was diagnosed with Alzheimer’s about two years ago. I have another condition as well, Hypertrophic Cardiomyopathy, which makes me very tired so I am limited in what I can do. A year ago I moved into a McCarthy and Stone assisted living development where I have my own apartment but there is always help at hand if one needs it and the building is staffed at all times. There are extra facilities available including a dining room serving lunch every day, a laundry and residents lounge. I would like to get more involved with Alzheimer’s Society but because of the chronic tiredness don’t know if there would be anything suitable. I would be grateful if you have any suggestions of something useful I might do, Thanks, Judith

    Sent from my iPad


    Liked by 1 person

    1. I’m sure there’s lots you can be involved in Judith. You could maybe sense check information sheets at your leisure or join the research network to look through applications. It depends what you like doing. Where abouts in the country are you? If it helps, you could email me?


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