Yesterday saw one of my few trundles further afield this August as I was going to Derby to promote Admiral Nurses with our LEAP (Lived Experience Advisory Panel) group. A long blog but then it was a long wonderful day….
We were going to meet a DEEP group called ‘Lifting the Cloud’ at Derby University campus. Sometime last year LEAP came to visit me and my playmates at Minds and Voice, doing just the same thing. You can read about their visit to us below
The sky looked promising outside my window as I got up….
Once again, because events are few and far between in August, it seemed strange and alien. It takes more effort, more concentration as the routine of going out and about has been lost over the summer period. But once again, the organised me, had everything already booked weeks ago and instructions listed for me simply to pick up and follow……..phew!
Autumn seems close by as the early morning was darker than usual and the cool nip in the air made me thankful for my fleece. But the first train to Sheffield was on time so a good start……
And nice familiar sites calmed the strange feeling inside as we trundled by the Humber
Both trains there were on time. No cancellations, no delays to stress through…….very strange experience…..ha!
The aim of the meeting is to tell people about Admiral Nurses. I remember some of Minds and Voices not having heard of them. If you’re diagnosed with cancer you’re automatically given access to a Macmillan Nurse (specialists in cancer) whereas with dementia, we all know the potluck nature of support available. Admiral nurses (specialists in dementia) are still a relatively scarce resource and we’re trying to promote more areas to commission their services.
Toby met me at the station along with Rachel and Diane and we had a cuppa while waiting for everyone else..
We made our way to the Uni and were met by the folk from ‘Lifting the Cloud’……..
George and Suzy started off by welcoming everyone……and we did the postcard ice breaker
We had to choose one from Suzy’s collection to say what makes us happy..
We then sat next to someone we didn’t know, to explain why we chose the card…..the room suddenly came alive and chatter and laughter filled the air
We went round the room and just said who we were and showed the postcard we chose and said why……a lovely way to get to know everyone
We then went through our Agreed ways of working……we don’t have ‘rules’ as we like to break rules too much…..😂
The group was very mixed, many people with dementia and many supporters……and a lovely group it was…….
Rachel, Hannah and Susan then said a bit about Dementia Uk and Admiral Nurses……
Rachel first spoke about Admiral Nurses and what they are. We have to assume that people don’t know about their existence especially when they don’t exist in the area, as is the case in Derby. The Admiral Nurse Helpline can be accessed by anyone from anywhere though. For anyone interested it’s 0800 888 6678 and open 7 days a week – 9am-9pm weekdays and 9-5 at weekends.
Next up was Hannah who cares for her husband aged 55, who was a police offer. They have 2 young children. He was diagnosed 4/5 years ago and Susan, whose husband is 71 and is now in a Care Home.
They both spoke about how they came about Admiral Nurses. They simply told their story which is always so powerful….
“They just held our hand, through what was a horrendous experience’ said Hannah. “She listened to me and gave me the strength to carry on”. “She helped me meet other families, which was so important for the children”.
Susan…who lives on the coast in North Shields, then told her story….suddenly Admiral Nurses answered our prayers and arrived in our area. “More than anyone we met, our Admiral Nurse,Rachel, gave me the confidence by telling me I was doing a good job and visited us regular. Rachel and my husband had a lovely relationship. “They give that valuable commodity of ‘time. It’s been a life saver for us”
It’s hard to share personal stories but the value of hearing others experience must never be underestimated…………as the effect on the room clearly showed……
Dementia UK are continually working with commissioners to persuade them why Admiral Nurses are so valuable. The Hospital in Derby is about to advertise for an Admiral Nurse so that will be the first one in this county.
“Finding the right support at a time you need it is very hard to find” so one nurse won’t be able to support everyone, said one from the local group……..””we don’t want to raise people’s expectation”………..but then Jean said we sadly have to start small and use it to prove the benefit of their existence. “It’s really good news but don’t tell anyone”……which was quite right, but as George said, “Unless commisioiners have evidence on the table that it will save them money they won’t employer them, but we do have the evidence, we just need them to listen”
During break I chatted with a lovely man living with dementia and we talked about how we get by at home. A lovely chat……..exchanging thoughts and experiences …..me living alone, he, with his wife, who now does everything……
After break, George went through the reason for the existence of our LEAP group. To enable us to lobby for more Admiral nurse services……
“Admiral Nurses save more money than they cost and we have the evidence”…….said George through reducing hospital admissions, visits to Gp’s and there is a NEED just like Macmillan Nurses who invaluable to those with cancer…..
Wendy from Making Space which runs the Derby DEEP group, then filled us in on what their group has done, work in Doctors surgery in conjunction with Young Dementia UK, East Midlands trains and the University making a film to be used for training East Midlands staff.
Sue, one of the carers then spoke about what she gets out of the group. The diffulty they had around the diagnosis process. Realisation of the need for support and joining the group.
“It’s difficult being on the other side of the fence when you need help”……they needed to find something that appealed to them and tea parties and dementia cafes was not for them. But then the DEEP group was introduced to them as more of a debating group, a gathering……..”we started to feel part of something. It’s not just about what you DO there, what’s more important is that feeling that you’re not alone and It gives us intellectual stimulus”
“DEEP was a gateway into something we would benefit from…..”
We then split into two groups, people with dementia and carers……..
We answered 2 questions
Can you describe some of the things your group has done?
How does your group ensure the voice of people with dementia (including different stages) are heard in the group…?
They’ve been asked to visit local places to see if they’re dementia friendly…..Bolsover Castle being one……
Me, and Diane then said why we liked being apart of LEAP and I said it was a lovely relaxed family and everyone’s voice is important. We respect each other’s views……
Both groups then gave a brief resume of the discussion……
The carers group spoke about the uniqueness of DEEP groups……and how specific personalities are attracted to DEEP groups. Toby then gave the summary from our group. Meetings are made accessible and people are given time to speak when speaking is difficult. It helps people get the confidence to challenge…..
So after a nice lunch we had Paul Edwards – Director of Clincal Services for Dementia UK
He spoke about where their future is going. They want to grow in primary care, in Gp services. They have a campaign coming up that will work with GPs that sounds very exciting and could make a real difference and provide the evidence they need and may get GPS on board.
We then split into 3 groups; one with Paul talking about the campaign, one with George talking about how people can influence commissioners to take on Admiral Nurses into the area…….I joined the 3rd group with Suzy just chatting about anything we wanted. It turned out we were 4 people with dementia who joined her, which was no surprise. I joined her as it was the time of day when I was starting to go downhill…….
We spoke about sleep, time and how exhausting it is living with dementia. I said how the time of day was catching up on me
But we all said how tired we were as we’d been listening and doing an awful lot in the morning………how exhausting living with dementia can be…..how frustrating it was but Lyndsey said, ‘But we only have one life so we have to live it”……….
A quick break was followed by feedback from the groups before we wrapped up. I was sooooo tired…..
There’s already specialist cancer, diabetes and Parkinson’s nurses to name a few…..so why not specialist dementia nurses – Admiral Nurses?
Admiral Nurses could potentially fill the gap after diagnosis, if only they were more….
I put my iPad away at this point. My brain had clearly pulled the shutters down and turned the Open sign to Closed. It was the first full day trundle without staying overnight for ages but what a lovely day with wonderful people and meeting new playmates……..it was worth the exhaustion…..