Mental Health and Dementia Research Meeting…

Yesterday I was asked to speak at the NIHR ( National Institute for Health Research) Clinical Research Network in Yorkshire and Humber, Mental Health and Dementia Research Delivery Team Meeting – (crikey! Thank goodness for copy and paste!)

The meeting was in Leeds. Chris Rhymes, Lead Research Nurse in the area, had asked me to talk about the importance of having Patient Research Ambassadors. Some delivery teams and Ambassadors themselves, are unsure about the ambassador role and with all research teams from all the dementia and mental health organisations present, it was a good opportunity to stress the importance of including us in all they do and the value we’d bring.

I woke up to find it dark and throwing it down with rain. It was one of my silly o’clock starts……The taxi man was nice and early and we both chuckled as the radio DJ mentioned sunshine and showers, as we splashed our way to the station with the wipers on double speed……..💦💦💦💦💦

No photos of the sun beating down on the Humber today or any other view from the window as all you could see was the rain. Dark and dreary. I’d only had 2 hours sleep so I could easily have opted out of this one and let the day pass by, but my spirits were lifted as I was meeting up with my previous manager from Leeds Hospital – the lovely smiley Helen Gilbert and she can make any day feel like a sunny day.

I must confess though to seeing a few chinks of blue sky on the trundle to Leeds, so things were looking up. I didn’t know the venue, but I knew the road it was on very well as it was my walking route to and from work for many years. I used my walking app to help me get there and just as I arrived at the venue……the sun shone🙄
I was met by a nice man who was showing people the way from outside👍 and was met inside by an even lovelier site inside the room….

There were familiar faces and people who said they’d met me before 🙄 which was nice…….
Chris opened the morning by asking each table to come up with a couple of things they wanted to get out today. We were a real mixed room of expertise, which was nice to see.
The first speaker hadn’t arrived😳 so we went straight into listening to feedback on 3 studies in the area and first up was the lovely Sahdia Parveen from Bradford Uni talking about her research ‘Caregiving HOPE’ – Are people willing and able to support a family member. Willingness to care and ‘Preparedness’ are 2 different concepts.

Someone might be willing but simply doesn’t have the knowledge of how. Someone may have the knowledge but not be willing.Different transitions periods, (early, middle, end of life care) require different skills and very little is understood about people’s preparedness.
They recruited 187 south asian carers which was amazing and recruited 724 white british carers. That’s the most south asian carers recruited for any study – brilliant Sahdia!
I wish I could have recorded and played Sahdia’s talk as she said some really interesting statements, facts and figures, but I just couldn’t type fast enough…..

Next up was ‘Journeying through Dementia’ – Alisha Patel and Ben Thomas

It’s based on Lifestyle Matters programme – it’s been redeveloped to apply people with dementia, trying to show they how to have a ‘better journey through dementia’ We need to create an evidence base for effective interventions. It’s trying to enhance the quality of life from early diagnosis.
It’s a 12 week programme – the people living with dementia decide what the programme covers after getting to know them.
Again, interesting facts about barriers to recruitment and things that worked.
Quick break and the lovely Penny Kirk (Twitter friend) from NHS England came over and said hello and grabbed me another cuppa tea☺️

The third and final update came from Emma Wolverson talking about ‘Caregiver Pro’.

Emma is a clinical psychologist from my region in Humber. Caregivers pro is a multi disciplinary project with engineers, IT people as well as the usual team. Emma spoke about the GAP that exists in services, which the project is hoping to plug.
They’re looking at whether there is a need to fill a diagnosis with dementia through technology. It was highlighted that people with dementia were the biggest group of people who could benefit from technology and this is where Caregivers Pro comes in. Participants are given a tablet device each and supported lots in how to use it.
It has many sections on the web site but the social networking section specifically for people with dementia to ‘meet’ other people with dementia, has been really popular.
It has local information but it’s good that people can add a comment e.g. ‘Good group but mainly men” or ‘Don’t park here” etc etc.
Hull is the only site for UK Pilot (Yeh!) and it’s also in Italy, Spain, Greece and maybe other countries, I can’t remember.
They’ve had a problem recruiting……..and Emma mentioned East Riding not having a memory service………mmmm, yes, I know as that’s my region…..they’ve also met the proverbial gatekeepers in the NHS……..saying that people with dementia don’t like technology…….even though they’ll sit and help them…….🙄 If you live in the Hull area, this would be a brilliant project to be involved in.

Up before me was Penny Kirk and Charlotte Whale form NHS England Clinical Network
There are 12 clinical networks across England. They spoke about all the work of their Network programmes.
Lots of change in the NHS as usual at the mo, none more so than the new STP’s (Sustainable Transformation Programmes) and Penny showed us a lovely sentence which went something like this…….

Life is like underwear – change is good………🤣

I’ve been involved and still am involved in some way in all 3……….😊

Finally it was me before lunch………
I spoke about the value of every project having a patient ambassador as we bring the reality to participating. I said many things but ended with this:

Researchers and clinicians can talk all day long about why we should be involved in research. But to the patient listening, it’s simply a job that you’re doing. For a patient to hear another patient talking about why they should be involved in research, it’s real, no motives to meet recruitment figures, just a real description of what it did for them.
So that’s why you should all seek patient research ambassadors and make them your best friends.”

I left after lunch and had a cuppa tea with Helen in the venue cafe. The staff at this venue were wonderful – smiley, helpful and friendly – perfect and double brownie point for them👍

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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