The rain had fallen all night long at Woodbrooke. Sleep had been very hard to come by, even the silence and peace hadn’t made my banging head disappear. But was looking forward to our final morning together before heading to London. We had breakfast together and a catch up. Philly mentioned having gone out early in the rain to do some sketching which made me go out and take a piccie before we started……
Agnes took us through a ‘living in the moment’ 5 minutes with our eyes closed to relax before we started the day. If you’d like to hear Agnes do her 5 minutes relaxation exercise you can listen to it it on Dementia Diaries
We started off looking at the Research Pack, which Rosie helped with as well as the Open University. It is designed for use by people with dementia. It’s available on the DEEP web site as a pdf document for anyone to view. It’s a work in progress and will change as we work with over the year and version 2 will come out next year.
The first part of the morning will be taken up with a debate about what “people with dementia in the driving seat of research” actually means.
But before we started we reflected on the day before and said how we felt apart of something amazing in a comfortable safe environment. I always feel comfortable in the knowledge that Rachael and Philly will make it good.
So to the debate…chaired by Howard and being filmed by Philly…
He asked us what being in the driving seat means to us. I said:
‘How it’s us leading and inviting experts in to help enable us to do the bits we find difficult – researchers coming through our door instead of us going through theirs’
We spoke about whether it mattered that the Dementia Pack was in the main written by those who don’t have dementia. But we’re not naïve enough enough to think we could start With nothing. We needed a starting point and this is our starting point and the next version would have more from us as we learn over the year.
Tom used the analogy of him liking to bake soda bread, which he does well, but he’s never going to replace the baker who makes a whole range. Each has it’s place just as we will have our place, researchers have theirs. There’s room for us all. All we’re doing is dispelling myths around our capability.
Rosie said, It will be useful for academics to see how we can use ordinary language without taking away scientific integrity.
It will be interesting to see how our high emotional feelings affect the research and this is where our supporting researchers can help by putting our questions differently to us.
We discussed what will make it difficult for us. I said how remembering what’s gone on in past meetings. For me every meeting is a new meeting, which is probably why I have so much enthusiasm each time.
It’s not everyone’s cuppa tea to be in the driving seat and we have to respect that. But we should also inform people and support people should they want to try. We have to show what being in the driving seat looks like for them to make informed choice.
The concluding question was what we do next to put people in the driving seat. Rosie suggested writing journal articles. Tom and David said “DON’T START YOUR OWN JOURNAL’!!! Special editions and getting into other non related dementia conferences. Our enthusiam and help of those people around filled us with enthusiasm. David, from the Mental Health Foundation said it will unlock the key to show academics what can be achieved in all arenas.
What we’re doing is unprecedented – we mustn’t forget that…..the time is right…..
And Philly revealed her secret drawing behind the flip chart….a talent is discovered!
So after a cuppa the final session was on next steps when the National Lottery have agreed our recommendations. We had 4 things to consider.
We want to know that things have change as a result of this project and so we intend to have our next Oioneers gathering discussing the ‘Theory of Change’, which sounds very heavy, at St Katherines in London .
It’s been suggested we think of 5 outocmes we hope to see. Sini, a Swedish reasearcher has offered to help us. We decided we needed to change the title……Tom and David suggested we don’t invest too much time on this as most of what we achieve won’t come out until towards the end….
The second question was ‘Measuring Belonging’ – do groups feel more connected through this project maybe to the Deep community. Chris Clarke, Clinical Psychologist from Hull Uni is wanting to work this us on this. How does working with projects together affect our feeling of belonging. Chris couldn’t get to the meeting in the end so we couldn’t ask him questions sadly.
The third was around a seminar every 6 months on a particular topic to which we could invite pioneers, advisors, enemies(😊) – thinking of 3 issues – diversity, ethics and the third being what we can learn from the broader disability movement and vice versa about involvement in being in the driving seat. What can we all learn people with dementia learn from the wider disability community regarding research.
The last agenda item was whether us as Pioneers wanted our own research project? David told us about the project 20 years ago when Asylums were being closed down and he worked with the British Library and captured 50 oral Life stories of people who had been in these asylums and captured their stories on video. We got very excited at the different mediums we could record on this project.
Our enthusiasm along with the suggestions from Rosie, David and Tom was sparking loads of suggestions and left us all raring to go……time for a last piccie in front of Tony Husbands wonderful Dementia Enquirers cartoon
Crikey, where had the time gone……? A fascinating 2 days.
Why do I trust Innovations?…….because they’ve never let me down. I feel so comfortable in the company of Philly and Rachael, that if something goes wrong, they’ll know how to sort it for me. Basically, they make me feel safe and comfortable – They just get it…a rare breed……..
Now to London for the last but one event of the week…….a very different type of event…..