Back in London again……..Day 2…

Following on from yesterdays blog……..

Sooooo after night waiting for daylight to dawn, I got up, passing the 2 red lights flashing at me still………In the light of day, the source became clear – the aliens had left the room – and it looked like a fire alarm on the ceiling…….but isn’t red for danger?????
Ah well……at least I knew……..and the trains soon started up again outside my window.

Me thinks there could be a new station on the London Underground …….Room 218……

Anyway, today it was time for the actual meeting of the 3 Nations………..

I had the lovely surprise of George Rooke having arrived last night as well, so we were almost a full set – just Northern Ireland missing……it was nice to have so many people present.

It was also Chris Roberts birthday! -as I found out from Facebook when I went on first thing to find out whose it was………🎂🎉

So once we’d all got our cuppas, had hugs and catch ups……..we started off going through the actions from the last meeting. I realised that I hadn’t done anything that had my name against it…….🤦‍♀️ but I need an email asking me so I begged forgiveness🤣 and asked Hannah just to email and I’ll reply…..

Aims for today – to assess how the group is running……….promoting the group, and the web site development…… name a few….

We need to get the membership forms and database up and running by the conference so we can sign people up…… present we have nothing to offer people, which is very frustrating.

We all said we need to invite DEEP to our meeting as from the start we said we had to work with the Society but also DEEP.
We’re in limbo until we have the database and membership form signed off but we’re promised it is coming soon and we’re pressing so much for it to be up and running at the Conference…….

WE’ve had people from abroad wanting to be members and we agreed that we might be able to have a ‘Friends of’ section who receive the Newsletter and hopefully want to create a working group in their own country.

We can work with professionals who can help people who have no interest in our group.
As Shelagh said, we, in the group, do live in a ‘Dementia Bubble’ – we don’t represent many people with dementia but we can help them by influencing change at a higher level and those people can then help those with no contact with services……many people are ‘hidden and seldom heard’ said Nigel……….
Shelagh opened up the conversation that everyone was thinking………..
‘We need to make sure, no matter what, that no one gets left behind” – said Nigel.

We can only do what we can…….sometimes we don’t see in our line of vision the changes happening as change is too slow………’s very frustrating for us. Time is one thing that isn’t on our side and change takes so much time that it seems to us that we’re not making progress when in fact we are – just not quick enough for us…….

We then handed over to Bernadine from Northern Ireland, who was here instead of Adele today – her first words were ‘Don’t beat yourself up – we have achieved an awful lot by being here’
The group can’t be all things to all people.

The social care issue is one thing that will and does affect us all, so maybe that is our one point of focus………’It’s going to the right person and going with one thing’ said Nigel quite rightly.

It seemed a very subdued meeting – something didn’t seem right and comfortable for me……..I think we’re all frustrated by words, words, words, and need actions and change before our heads explode……🤯🤯🤯

After a tea break Rik joined us from the digital team to define what our site needs to do and for what type of users. We split into 4 groups and discussed the basics of the web site.
Who the users will be and the needs they have from the website

I had trouble with this and was totally lost until I sat in and listened to George and Nigel and then was fed by their knowledge and enthusiasm. My single contribution was under the group Activists where I said we need to give people ‘permission to complain’

Once Rik comes back with a resume of todays workshop we can then go to web designers

Once Rik had left we finished of the final bits of the agenda….went through our budget etc…..always interesting seeing the costs of everything……..

Followed by…….Lunch time……..phew….. as it had been a long morning…….time for a cuppa………..

We were heading for the final session…….and I was verrrrry tired and finished………

Maybe I needed a ride on this speed boat to wake me up – random, yes, I know but I just like the piccie of speeding away……🤣

Shelagh spoke of the need to produce work where we’re actively battering the Department of Health around Social Care. Let’s use the strength of this membership and hopefully the wider membership who will join us, to actively batter.

‘Nothing changes without political will’ Nigel highlighted. We can bang on doors and talk ‘til we’re blue in the face but nothing changes. We still have poor post diagnostic care. For every single person diagnosed, there are people around these people also affected. So the figure of 850,000, which we believe to be an underestimate of those living with dementia, is multiplied tenfold when you add in those around them. This highlights the enormous chaos of the Social Care system even more.

Diane spoke of the other end of the scale – how working within our own communities is another direction.

I think the discussion that ended the day showed our frustration and part of my little spiel for the Alzheimers Society conference in a couple of weeks time fits nicely……

‘Words, say how we think. How we feel. How we want to be treated.

But we now need ACTIONS to turn these words into actual change.”

Definitely switched off then, I think…… nothing on the end session with Tim McLaughlin…….I had to leave a little early as well as Northern Trains were on strike again today and I would have got stuck in Doncaster……😳

If you want to hear more of what I say, along with my fellow members of the 3 Nations Dementia group, come and hear our opening 45 minute session at the Alzheimers Society Conference on May 22nd……more details here…..

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. 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.

4 thoughts on “Back in London again……..Day 2…

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