Developing a City of Research..

Yesterday started off on home ground at a conference in Hull. Cathryn Hart – Assistant Director Research & Development, Humber NHS Foundation Trust – had asked me ages ago if I would do a talk entitled ‘Why get involved in research’, at their first celebration conference which will hopefully become an annual event.

Gemma is part of this wonderful research team so it was nice not to have to rely on taxis and have a lift from my daughter!

I was only able to stay for the morning as I was travelling down to London at lunchtime, and the day started off very wet and miserable. However, my mood was instantly improved when we arrived as I was met by Cathryn and all the team of smiley faces, and a cuppa tea, of course……….

There must have been well over a hundred people in the room from all different specialties and many people said hello. Sharon Mays, Chairman of Humber NHS Foundation Trust stared off the day.

Today is International clinical trials day as well as it being dementia awareness week. Sharon spoke of today as being a day of celebrating the good work done in the Trust.

We then watched a short video highlighting the achievements of the last year.

Lots of the film were complimentary comments from Trial managers that the research teams have worked alongside.

Next up was Professor Allan House from Leeds University – Professor of liaison psychiatry.
He was speaking of research in psychological medicine. He said he didn’t like the idea of being the Keynote speaker, so to control his nerves he thought of himself as the warm up act for the next speaker……….😂 must remember that one……..
He started off by saying that people with cancer do far better if they’re part of an environment of research than if not, and wondered if this was the same for mental health patients…….the answer seems obvious to me but sadly the offer of research isn’t always there.

He showed a picture of the Leeds General Infirmary, which was lovely to see again as I used to work there.
He was talking of research into those that self harm and was asking whether the current treatment is appropriate. So many services are managed and commissioned in different ways, which as he said, just doesn’t make sense – integrated networks make far more sense.
Next up was Prof Barry Wright from York Uni and part of Hull York medical school. He was speaking about child mental health research. They focus on 2 main strands of research
Deaf children’s mental health & Diagnostic instruments for Autism in deaf children study
AND Main child mental health research centres. With lots of children’s research studies we tend to use the adult approach and transfer to children but it really doesn’t work. So they’ve set up child oriented interventions designed for children. So their PPI work involves children making animated films for them to say what works for them. Children have to be involved in design etc but in an appropriate way – not rocket science but often forgotten.
He spoke of some wonderful studies – writing children into stories about themselves to help with social behaviour and another study that involved lego. All sounded wonderful. They want to evaluate interventions to prove success is affordable to commissioners. Very interesting talk.

They have several members of their team who are deaf themselves, which is anything but tokenism – marvellous.

Time for a cuppa tea was followed by me. I spoke about being involved with researchers gave me back the sense of being valued, how professionals should normalise talking about dementia and my love of working with students, after all they’re the researchers of the future. They have so much less baggage and pre conceived ideas. They can help change the future of dementia, to change views, perceptions and reduce the stigma around dementia.

So nice to be at a local conference With the aim of developing a city of research not just a city of culture for Hull

Before I knew it I was whisked away to the station to head for London. A lovely volunteer driver drove me there and he was early so received one of my rare brownie points. He told me of all the countries he’d worked in and different jobs he’d done all over the place and he’d then become a volunteer driver for the past 20 years……..He must have been at least 150 to have crammed all that into his life😊

Once I got to London and settled in my hotel it was time for an hours tweetchat on the subject of why research is important to patients – seems to be a theme for the day……

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. 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.

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