A local morning with the NHS followed by a trundle to London…

Yesterday I had a 2 part day……the first was with my local NHS Trust promoting research and then I had to trundle straight after down to London, as I’m with Dentists on Thursday…… 🙄……

So my friend Cathryn Hart from the research team picked me up at 8am and helped me load my book filled big suitcase into a her car and we trundle towards the Trust Headquarters…..there’s been some lovely skies in a morning and this one was no exception…..

We arrived at the venue and the team were already setting up..Cathryn’s research team stars are one of the most organised teams I know……..but then they have a wonderful manager in Cathryn…..every team is only as good as the manager and the culture that exists…

People began to arrive…..all sort of specialties were represented, psychologists, Occupational Therapists, junior docs…..and many more….

I sat on a table with people who were talking about Christmas 🎄🎄…….how someone had bought a chocolate orange to go into her little ones stocking and was so far on her third one as she kept eating them on evenings when nothing but chocolate would do 😂🤣……..All things advent calendar were discussed….so it started off with everything Christmas and just up my street…….how the simple things are often the best presents…….one persons little one had asked for a sachet of Macdonald’s Tomato sauce 😳 and lemon hand wipes you get in some restaurants 🤣😂……….perfect…….

Emma Wolverson reminded me of Hull Uni online Dementia Masters course – all the course is online which means that people with massively busy lives and in full time work can also do the Masters degree. All their lectures are done on line too so people can be in the most random places. One person was even in the hairdressers having her hair coloured but because it was on line it didn’t matter and she couldn’t have done it any other way…….

Anyway back to the business of the day and promoting NHS staff to promote research in their day jobs….

They started with a lovely cartoon on screen which had been drawn by a research participant….

Because research really does change lives…….

Cathryn started off with the housekeeping and welcoming everyone. The programme was really varied simply to give people a flavour of how simple it is to get involved in research. ‘Demystifying Research” said Cathryn……

She then showed a video celebrating 12 months in the life of the research team…..”Continuing to change lives”…”Research is not just about testing new drugs”

Cathryn apologised for the self indulgent video, but there was no apology needed as it showed their success. We don’t celebrate success often enough…..they should be very proud of what they’ve achieved….they’ve made a huge difference to me…….

The next speaker was Carolyn Scott a forensic psychologist speaking about being a Principle Investigator and what if involved

….she spoke of TIME being the biggest issue as a clinician. Sometimes you feel like you’re drowning with the day too day workload so how could you possibly make time for research as well….? But then an opportunity arose on a hot topic in their area and they thought why not, as it was such an important area to research…if the passion is there and the desire to make a change is there then anything is possible….and the Humber research team made it feel straightforward even during the difficult times, which always happens in research…..I liked her slides as they were straight forward and simple and fun….

As a Principal Investigator, “It wasn’t as scary as I thought”

Alison , an OT from Hull Memory clinic and Maister Lodge spoke next about delivering an intervention in practice…

Social research was new to her as she liked data crunching (an unusual breed!)…😂

She then started to think differently and started asking ‘How useful’ is what we do, the interventions we provide?. She was part of the VALID study (Valuing Active Life in Dementia), she ‘s also involved in the Pathfinder study (looking at talking therapies for people with dementia who also have depression) and is now the Principla Investigator for the PRIDE study.

She spoke of why she does all this in research – because it gives her a bigger overview of her work. It’s good for her personal development and research gives an added bonus to her career as an Occupational Therapist. The Humber Trust supports staff hugely who are involved in research and being involved as an employee supports the Trust values of Caring, Learning and Growing.

I still get to be a clinician but I’m learning the extra skills of a researcher and more importantly I’m making a difference” It’s a win win….”

Emma from the research team then told everyone about the day in the life of a Research Assistsnt …..she’s been with the team for 3 years and is one of the team that has visited me at home…the team are all made up of graduates from a variety of background including Psychology, nursing and social work.

They work on many studies at any one time they they have to be good at juggling and very flexible…🥰

Their priority when visiting someone for the first time is simply to make them feel at ease and get to know them….wonderful and they all have smiley faces so even more perfect.

Before break a Junior Doctor had videod her talk as she couldn’t be at the event. It was all about her involvement as a Principal Investigator in a study – it helped her develop her leadership skills and it allay her fears of research as Cathryns Research Team were there when she needed them.

Tea break time and a mince pie……..🎄

Next up was me…and the team had made up a lovely slide for me to have in the background…

….part of what I said was:

Maybe some of you have been diagnosed with a condition you weren’t expecting or someone close to you. It can be devastating not only for you but all those around you. We’re not the only ones to get a diagnosis. You trawl the internet for clues, for help for advice, we all do it. But what do you do if that diagnosis is a life limiting condition? What do you do if that disease has no cure. Where do you look then?”

Dr Soraya Mayet was up next talking about Telemedicine in Addictions…..Opioid addiction ..they wanted to look at ways in improving attendance at 3 monthly reviews by using Telemediicine.

The point of it is to overcome geographical barriers and increase access to healthcare but there’s been little research done on Addiction. Our local area area is 900 square miles and people often have to travel huge distances to attend reviews so Telemedicine may overcome this. Fascinating insight into the region’s Opioid addiction, the difficulties to overcome and solutions ………at the end of the trial they’re asking all involved, participants and the professionals what worked and what didn’t.

Emma Wolverson was last to speak about Caregivers Pro. The aim was to design a website for people with dementia and their supporters. The study came to an end earlier this year was Emma was here to show “you can survive’………they didn’t get the findings they were expecting but they learnt so much more.

Web sites that currently exist give support to Carers so they wanted this one to include people with dementia. They wanted ways to provide peer support when people were isolated. When are people ready to step through that door for social support? The focus groups showed how they wanted a ‘monitored’ website and kept up to date. They also wanted to be shown how to use the website. It did lots of things but it also had a “newsfeed’ a bit like Facebook which provided people with the ability to post things.

They were given a tablet which only had the web site. They recruited 200 people

 

People with dementia don’t use technology” was the barrier they kept meeting…….but once they recruited people they proved how ridiculous this statement was. They recruited some people who had never used the internet and they were able to learn……there was no difference in time of usage between carers and people with dementia.

Fantastic interesting findings from the study………especially the time people logged at. The peak time was between 9-10 in the evening. So filling a gap when professional might not be available. Those who used it more were people who had attended face to face training. They’d formed relationships face to face and kept up these friendships on line. So technology alone may not be the sole answer, but combining it with face to face can enhance and improve.

The outcome studies showed no improvement between those that used it and those that didn’t. BUT as Emma said we need to be better at measuring outcome measures in Dementia Research. It’s no good asking us “How have you been feeling in the last 2 week” because all we remember is now…..so it has shown how the debate over Outcome measuring in Dementia needs to be totally overhauled…….which can only be good for dementia research and probably other research.

Emma ended with a slide with apparently quotes from me which was nice

Time for London now…….

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.

8 thoughts on “A local morning with the NHS followed by a trundle to London…

  1. In this report you said about one research project that “they didn’t get the findings they were expecting but they learnt so much more”. I think that’s the best reason to do research; when a study starts the researchers think they know how it’s going to turn out, but it isn’t always like that! And the learning that results is every bit as valuable.

    I can’t believe you headed off to London as well as doing this on the same day! I don’t think I’d have tackled that, and as far as I know I don’t have dementia.

    Liked by 1 person

  2. . Sounds like a fascinating day. Every area could do with one of those with audience from many patient groups and health worker groups. I suspect you have helped galvanise this, Wendy. Also, lucky to have Cathryn.

    Liked by 1 person

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