On Friday I was in York. Me and playmate Howard were meeting with Damian, Chris Clarke from Hull University and Mark Wilberforce fromYork Uni, to discuss the the course of Minds & Voices. Our amazing course which people with dementia designed and deliver with our abler enabler, Damian. We actually start our next course on July 30th for anyone affected by dementia in the York and surrounding areas (if you would be interested to here more, please contact me or Damian on
email@example.com or telephone 07927 405854
Anyway, back to Friday. We have to find a way of proving our course works to convince those with the money to refer people to our wonderful course……..
The day started off well as my ipad was still working – phew! me thinks another blog is in the pipeline about technology…….
It was overcast and cool as the taxi driver pulled up but apparently a mini heatwave was about to hit us, so what to wear!🤔
Once I got to the station the usual signs greeted me……’Train Delayed’…..🙈……then I caught sight of the reason…..”Due to a fault on the train” 😳 …..so 15 minutes later when it trundled into the station, it did make me wonder whether the driver had simply taken a hammer to the offending part….and more importantly, which part…..🙄
The train to York from Hull, was on time but ipad momentarily died, but thankfully the quick fix of a ‘hard restart’ worked first time. As we trundled passed the Humber, the heatwave definitely wasn’t on the horizon……
Once in York I made my way to the Priory Street centre. I saw Howard in the distance with his headphones on and realised he wouldn’t hear me, so tried to catch him up but it was never going to happen…..😂 after a hug and hellos, we made our way in to find Damian and Chris waiting for us with a cuppa weak black tea…🙄
Once Mark arrived, Chris welcomed us and did the usual housekeeping. Chris is an NHS clinical psychologist and university lecturer at Hull.
We also had Keisha, who is Chris’s assistant, to take notes.
We had a few hours together to plan a way forward for our piece of research.
There were a few absent, Prof Esme Moniz-Cook from Hull, Dr Mark Mark Pearson from Hull/York Medical school, a researcher in palliative care and an expert on designing projects, and Sarah Daniel from the Research and Development Team with Tees, Esk, Wear Valleys NHS Trust. They’re also on the team but couldn’t make it this time.
We don’t want to undermine the scientific integrate of our research, but we want to keep it simple. So our proposal will need to meet the needs of what the reviewers are looking for but we want to make it plain that we want to make this research accessible.
We went through the funding options and spoke about what they like to see and hear.
We said how our course could offer the medical world something to offer as a pathway. The NHS don’t offer much post diagnosis, so if we could get it through NHS ethics, it would give them the proof they need.
We had sooo many good ideas, our heads were buzzing……and that was just concerned with how we would frame our proposal and the timeline……
Me and Howard would be co-applicants and Chris and Esme would be the lead applicants. We would have collaborators who would help us at certain points in time.
We had a interesting discussion around capacity and our capability to be collaborators.
Tea break and the conversation still continued about social care and costs……..
Chris recapped on what we’d talked about pre tea……very useful as it had already disappeared from me.
Howard gave the brilliant suggestion of audio version of reports. Because the timeline is so long, mine and Howards ability will change so our continuing involvement needs to be supported.
Chris and Damian did go to North Shields to meet ‘Making Waves’ with Dr Sarah Mitchell –(very confusing for me as that’s also my daughters name!!)…….we did tell them off for going without me and Howard…..but they acknowledged we should have been asked.
They’re a new group….one lady shared her impact of a diagnosis. She said:
“I went from normal to ‘old lady’…….”
It emphasised the need to tailor each course to the group delivering it……
Howard had the great idea of being handed a prescription at diagnosis, of the Good Life course – if you’re given a prescription, you’re more likely to go……..the true meaning of social prescribing…….
I said our biggest challenge were the practicalities of getting clinician to refer or ‘signpost’ to the course. As the course will be no good without participants. We have to get the buy in of the local clinicians to make the course work.
I said we needed to invite one of the clinicians in the area to support the course so they can see it’s benefit which will more likely lead them to refer. Clinicians have a reluctance to ‘refer’ as they have this belief that they can be sued if it doesn’t work……they’ve told me they prefer to ‘signpost’ so they’re not liable. A sad reflection of the world we live in……
Peer led work can have implications for all health conditions…….we’re trying to understand more how our course model works and could be implemented anywhere.
Our course benefits both the people leading the course as well as the participants. It’s a win win.
We have support and advice from the York design service at York Uni (supported and funded by the National Institute for health Research) They advise researchers. They advised which funder to approach and will look at our ideas. What the research will look like. They were very positive about the research being high impacting. It’s been driven by people with dementia. They said, keep it simple and focus on one thing. We can build on themes in the future.
I said….”Develop in small chunks to make sure each chunk works …..and we’re on the first chunk”
There’s another department at York Uni called York Involvement who support people to be involved in research. They’ve said they’ll provide training for us, but I asked,
would it be of value as I would forget the content immediately, so probably very good for some but not for us.
Time was ticking so we swiftly moved onto the aims and question we could ask as our research question. I said, Can people with dementia have an impact on social perscribing?…….Howard and me came up with many ideas, but we couldn’t come up with a precise punchy question…….
We reverted to paper on the wall and a starting sentence and then swapped and changed words around until we were happy. My head was banging after concentrating for so long and with all that thinking…..
Such a useful insight in this stage of research – simply coming up with a title which many get wrong…..we did it and involved 2 people with dementia in me and Howard.
That was the wow bit of a verrry interesting meeting……….
I misread the number on my post it for my train times and ended up missing my train🙈…..luckily there was a bus waiting by pure coincidence so I got on that as the next train was an age away 🙄 but then that was mega delayed in the Friday evening traffic🤯……so I missed my taxi time 😩but my taxi people came up trumps and the man that as due to pick me up just waited around for me 😍 that’s why I like my taxi people………must buy them their next batch of goodies to say thank you…….