South West Clinical Research Network event……

Following yesterday’s traumatic journey to Exeter, I got up rested and was raring to go for the days event. It was nice to hear the seagulls wake up first thing as it reminded me of being near the seaside.

By the way, I couldn’t find the lift to take me down from my room in the hotel yesterday and couldn’t find it again today……no signs on the walls in the corridor outside my room🤔……..I knew where it was to go up but couldn’t find it again to go down. So investigation as to the reason why was in order🤓……After breakfast I went up in the lift and searched for the lift sign in the corridors……there wasn’t one that said LIFT, but there was this……

I imagine it represents 2 people in a lift? But didn’t mean a thing to me at the time…….I was drawn to the 2 people and it looked like a hanging photo … 🤔 Besides that the staff were wonderfully helpful……..

Anyway back to the event. I was there for the Clinical Research Network, South West Peninsula Research Network Forum 2016/2017 – long title!
Leigh, Senior Research Delivery Manager, had arranged for research nurse Maxine to come and pick me up. She’d also sent me a nice smiley photo of her so I knew who to expect😊

Maxine arrived on foot and took me to the waiting car. Cassie drove us to Exeter Racecourse, which seemed miles away and I was getting very excited as I began to see we were following the signs for Torquay!! My hopes were dashed as we pulled into Exeter Racecourse ….

Maxine got me a cuppa as soon as we got there so brownie point and then Leigh came over and said hello and got me another cuppa so I could tell I was going to have a better day than yesterday..

Helen Quinn, Chief Operating Officer for the region started off the event by showing the headlines about the pressures on the NHS at the moment.
They have 50% of GP practices recruiting to studies 😳– wonder what the % is in mine!?

Helen showed a great cartoon as, like many areas, they don’t have patients queueing to participate. If only…….

She also spoke about research in the area needing to meet the needs of it’s residents, especially in the deprived areas – attracting research where the patients are …very interesting information about the area and a great talk which showed a very innovative region….

There was then 3 different talks by Clinical Lead specialties. One for stroke, Mental Health and then Cancer.
Fascinating new innovations on the horizon for stroke patients.

The mental health lead, a psychiatrist, started off by saying mental health was 15th out of 15 in recruitment so his ambition is to make it to 14. He was very funny and had everyone laughing. And he had a lovely smiley face. He wants to be the Leicester city of the region making him the Claudio Ranieri. So that means if he succeeds he’ll get the sack next year…….😂

The cancer specialist showed a slide with ‘Trial, not trial and error’
“Every patient is screened for every trial’ –‘It’s ok to ask’ so say patients. There’s an acceptance that it’s ok for patients to say no but at least ask and explain………Shows how different cancer research is to was refreshing to hear but very frustrating that the same attitude isn’t shared in dementia….

Finally, before lunch it was Kay Mitchell, Senior Research Manager with a talk called, ‘A Mountain to climb, Carving out a Career as a Nurse Researcher’’

This was a WOW talk to end the morning. She was the project manager on ‘Xtreme Everest Oxygen Research Consortium project.’

– she showed some amazing footage of climbing Everest, highlighting their breathing.
What allows some people to reach the top and others don’t? It’s not necessarily about how fit they are – could it be explained by genetics?
She showed some amazing slides of the research at Everest and the climb itself.– fascinating facts and figures simply from a logistics point of view….they had so much equipment!!

They brought their research completed on Everest back to help critically ill patients. Fabulous……

Kay finished off with some great tips:
Play to your strengths. Value the art of reflection, be honest about work-life balance as you can’t have it all. Choose your battles – allow others to add value (if they want to change something you’re written, especially if you’ve got it perfect. If it doesn’t make a huge difference, let them.) Pause and think, is it a logical, legitimate or emotional response to a situation? To pause can make a difference and stop things being blown out of proportion.
This was a fabulously different talk and everyone went into lunch buzzing……

I had a wonderful surprise at lunch time as a friend from my days eons ago with NHS Direct, now lives in the region and came to have lunch with me and hear me talk in the afternoon. It was sooooo nice to see someone from times gone by….and Cynthia hasn’t changed a bit!

Professor Anthony Wolf – clinical director kicked off the afternoon about the partnership with patients and public before it was my turn.

They gave me 45 minutes to talk so I spoke about anything and everything.

They were very kind in giving me a standing ovation at the end – very emotional…

Helen Quinn followed me by asking the question, Why do research findings not go into practice.? The DRIVE project looked at this very issue.
One of the issues was improving patient and public involvement and engagement. They knew they weren’t involving people enough –so are trying to do it differently now. To do all this all the workforce has to be on board. They’ve made some amazing progress in this area and I was very impressed by all the improvements.

It was now getting to brain closure time so the rest of the afternoon is a bit of a  blurr.
One particular traumatic moment, I remember well though, and sadly, I will have deduct a brownie point I’m afraid…………..we had a ‘tea-less’ comfort break. Someone asked me if I wanted ‘water’…………… 😳 It was all going so well……….

To finish off it was their Research Network Forum Awards and patient ambassadors presented the awards. Wonderful.

So worth the journey – thank you for inviting me to be part of your day South West Peninsula.😊 Let’s hope my journey home tomorrow is a good one…….or is that too much to ask……

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.

3 thoughts on “South West Clinical Research Network event……

  1. I was shocked by how awful your trip was. I was just wondering if a short flight would be less stressful or is that not an option or would that in fact be the cause of more stress?

    Liked by 1 person

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