DEEP meeting at London Bridge

Yesterday I was back down in London as Steve Milton from Innovations in Dementia had invited a few of us to a new policy interest group meeting.

At home the day started off frosty but sunny
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However, as soon as the taxi pulled out of the village we were plunged into thick fog and murkiness. It felt and looked like a winters morning….
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Virgin trains had decided to send in a replacement train to Hull which had no plugs which is always a worry when you’re travelling to and from London as I always worry that I’ll not have enough charge left if I get stuck or the train is delayed. So it was a ‘staring out of the window’ journey …………but it gave me a chance to retread all the documents Steve had sent – not that I’d remember a scooby do once I got there🙄

The further south we got, the sunnier it became……after we’d past a sprinkling of snow at Doncaster……….⛄

The venue was at the Mental Health Foundation at London Bridge. Steve had given us some walking instructions and I’d printed out a picture. I was a bit early so was trying to work out why London Bridge was familiar and so I took some photos only to realise I’d been here hundreds of time but at the other side of the river at Devon House!!!

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Now where have I seen this before......?
Now where have I seen this before……?
Of course - Devon House is across the river....
Of course – Devon House is across the river….

Weird seeing things the other side of the river….

When I got there Chris Roberts was there with Jayne and Philly Hare. Steve made me a much welcome cuppa and Toby Williamson from the Mental health foundation was also there, who I’d just been having an email conversation on the train! I also met Twitter friend Rachel Niblock for the first time😊
Keith Oliver arrived with Rosemary and Larry Whybrow-Gardiner with dementia was also there from Oxfordshire but I don’t think I’d met him before.Finally Jennifer Bute, the wonderful Gp with dementia arrived a little way into the meeting after an horrendous journey.

So what is the group about – well there was a small group of people in Deep who wanted to bring together a few people who were interested in health and social policy. A central group, not to represent DEEP but simply to be a ‘special interest group’ who are not geographically located like all the other DEEP groups – Minds and Voices in York being one of them.
Larry suggested we might be a ‘Think Tank’ and we would digest and analyse the impact of issues as new policies are being rolled out. We’re so much stronger together rather than speaking out as individuals. We’re often asked to speak at conferences as individuals, but how much more powerful our message would be if a few of us spoke together or commented as a group about things in the media.

We need to build a reputation for being wise heads first. What we all agreed was that we should work together with other organisation – we mustn’t be seen as competition, which we have no intention of being as our aim is to work with others.

Chris and Jayne brought us up to speed with the English and Welsh and also Ireland Working Group. They’d been up to Scotland to see how the Scottish system works.. Everyone diagnosed in Scotland gets a welcome pack and an invitation to join the Scottish dementia working group.Scotland now sees the need for local groups whereas, we in the rest of the country saw the need for local DEEP groups first – so we’re learning from each other.

We also spoke about the Prime ministers 2020 challenge and how DEEP groups provides a wider recruitment network of people with dementia. Philly has organised a meeting with Lorraine Jackson at the Department of Health in Leeds which I’ll be going to along with Chris and Jayne next month.

I think it was Toby who suggested we were referred to as a ‘Special interest group’ or it could be ‘Social Irritant Group’………very appropriate. DEEP is independent, representative and has authority. Dementia diaries were also mentioned as a great resource for engaging people and giving a voice to those who might not otherwise speak out.

Larry was very articulate and knowledgeable on Human right and UK domestic law.

What soon became apparent is that I’m not as clued up as the rest of the group and felt out of my depth with regards to knowledge about policy and rights so not sure how valuable I am as a member.I struggled to keep up with all that was being talked about.I’d also had a bad week anyway, so not sure how much that made things worse. I’m more use on the everyday stuff like design and wording I think. Everyone has a niche I suppose, and the technicalities are definitely not my strong point.

Surprisingly the journey to London was free from my usual jinx………..and went smoothly! I even picked up one of the new walking maps of London at the station on the way back……..bonus..

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However………the journey back was going smoothly until we hit Peterborough and slowed down…..the train guard came onto the tannoy to announce it wasn’t a ‘tourist guide round Peterborough and that police were chasing trespassers on the line at Grantham so all trains were being halted here……………he then came on the tannoy again to say it was more serious than first thought as the trespassers have now been injured and require medical attention and to expect a lengthy delay………so I’ll miss my connection and my taxi slot……..😏 I really couldn’t make it up……….my taxi people are wonderful and when I told them, yet again that I’d been delayed, they said they didn’t have a taxi but they’d sort something out for me – and they did – I arrived back to a very wet East Yorkshire, but I didn’t care…..I was home……🏡

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One day, maybe very soon please…..I’ll have a journey that goes to plan…………

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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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