So yesterday I trundled down to London for my last 2 days there before the New Year. I had 3 reasons for going; the first day I would be with Admiral Nurses LEAP group (Lived Experience Advisory Panel) and the following day with Young Dementia UK. My third was a tad random as I was having tea with Tom Pauk and Ian who wanted to discuss the possibility of having my portrait painted…….as you do…..😳🙈
Anyway the day didn’t start off quite as planned……..British Rail, in it’s wisdom had decided to release a whole new timetable……no problem, I thought, as I already had my tickets……don’t know what made me check the website the day before…..but…….my first train to Hull had disappeared😳 even though I’d booked that train🙄……
We usually have two trains into Hull at silly o’clock, 15 minutes apart, I’d booked on the second one that had magically disappeared and apparently no longer existed🤐. I went into my taxi people to book an earlier time only to be met with a gulp, a roll of the eyes and ‘Oh no not you as well’………of course everyone who had booked the later train now had to catch the earlier one, so no longer were taxi rides staggered…….poor taxi company had to call in extra taxi drivers to start early just because of the timetable changing………She said she would sort me out but not to panic if it was a tad late (they know me well) and sure enough it turned up on time and we grumpily trundled to the station (I must have had a driver who had to get up earlier than expected🙄
It was dark and cold on the station platform. Everyone in their own little world, many of us there earlier than expected……so what happened?…….the train was 20 minutes late….🙈later than even the original second train😏 which left us 2 minutes transfer time to the London train in Hull😫….
Anyway……..I managed to get the London train by getting on in the first carriage and walking through as it departed…… not a good start to the day🥺
It took the world a while to wake up and we were well on our way to London before I could take a piccie….there was a lovely sunrise in Doncaster but too dark to take a photo from inside the train and the a blanket of fog covered the land…
And the further south we got and the sun was getting higher in the sky it was desperately trying to burn off the fog. It was a lovely trundle with beautiful skies waiting for the sun to win the day…..
Damian had kindly offered to meet me at Kings Cross as Dementia UK (home of Admiral Nurses) have now moved to new offices, so safety in numbers trying to find it!
We trundled off to Aldgate to be met by Toby standing outside. Dementia UK now have lovely offices. Soooo many people arrived that I wasn’t expecting. Some from Twitter, some playmates, including George, Diane and Tracey.
We had an ice breaker from Suzy first…she put cards in the middle of the 2 tables with questions that we each had to choose and answer to the group…..
My question was ‘What helps if you’re feeling lonely?’……my answer……go on Twitter and either look or chat…..never lonely with Twitter.
The group was a mix of people with dementia and those who care or cared for someone with dementia so each went through and said who they were as me and Hannah were new members.
We went through our agreed ways of working……..
Toby took us through the impact LEAP has had over the last year, from advising on content and being a critical friend to the Trustees.
We went through the New Influencing Pack which would enable us to lobby commissioners or simply to promote their existence. Much debate then followed on the language used to describe the work of Admiral Nurses.
We were then joined by Hilda Hayo, the Chief Exec, Steve Jamieson who is a Dementia UK Trustee and Faraday who is about to start a new role in Comms.
Steve spoke about Dementia UK being ready for the ‘iceberg round the corner’…….we have to make sure we employ the right people with the right skills. How do they influence the future of Dementia Care? How can people who make decisions, make those decisions without those directly affected? The louder the voice, the greater the influence, so it’s important to work with groups like TIDE and DEEP and also the major charities.
We saw a film about how they raise money and gave feedback on that. George had the great idea of a voiceover being available instead of reading.
Hilda then spoke about their ambitions as a charity for the next few years. Admiral nurses aren’t all employed by Dementia UK. For example, through Admiral Nurse clinics – 45 minute advice clinics, funded by a myriad of organisations. Some are employed by councils, commissioners etc. Various organisations purchase different services from them – for example, clinics and helpline services.….there’s been some wonderful new services created for those with Learning Difficulties diagnosed and also post diagnostic support.
Within the triangle of support, the bottom part is their leaflets and helpline, the second part could be clinics and the top of the triangle is the specialist clinical support from the nurses.
The ideal would be to have an Admiral Nurse clinic in each Gp practice because they’ve found GPS speaking popping in to ask questions……
Lunch time…..and time for a group photo for their web site and mine!
After lunch George took us through our Workplan. We split into 2 tables to discuss…..understanding how we will influence the new strategy …….it started to become difficult to concentrate and my brain was started to buzz, conversations and voices starting to merge……..but a wonderful meeting, with a wonderful eclectic mix of people, each with their own unique experience of dementia at the table, showing the value of the Lived Experience with Dementia UK.
People affected by dementia should have access to an Admiral Nurse when there’s a need just as much as people with cancer have access to Macmillan Nurses……….a long way to go but some wonderful work being done…..