Involving the public and patients in research….

First blog for a while as I’ve had a tricky week or so🙄

Anyway, last Thursday saw me heading down to London for an overnight stay in preparation for speaking at the pre AAIC conference (Alzheimers Association International Conference). The event was described as:

“This pre-AAIC one day conference brings together delegates from different countries to discuss how persons with dementia and their care partners can become a more essential part of research processes. Following a successful event last year in Toronto we invite UK and international guests, to come together in London share examples of successful involvement in dementia, towards bringing common understanding of the emerging science of patient involvement. This inclusive meeting will allow anyone wishing to share their experiences of patient involvement in research through the interactive sessions.”

It was nice having an afternoon train, as it meant I could just catch the village bus into town and then amble to the train station. It was a nice warm day, no hot sunshine, no rain, perfect. Finally managed to get a piccie of the poppy field I’ve been passing for weeks and never managed – not very good, but the red says it’s poppies.

Sadly, once again, I had the misfortune of being on a Virgin train equipped with grumpy crew. I always thought Virgin to be a happy lot in days gone by either that, or I’ve been very unlucky two journeys running. Maybe it had something to do with the ‘borrowed’ train, with no working wifi, or maybe the rubbish tea they serve………….🤔

Anyway I got to London on time and I’d decided to walk to the hotel near Russell Square as it was quite warm and I thought the tube would be chaotic as it was nearing rush hour. It seemed simple enough on my walking map, and I had my app switched on as well.
Goodness knows what happened, but I veered off route……..and then got lost😳. I walked round in circles for a while and then just stopped to work out what to do. I looked around me and realised I was near my publishers. Me and Sarah had been there a few weeks ago and I must have been making my way there😱. I decided to reset my app and head back to Euston Road and start again………….

I soon realised that instead of going straight I’d gone right ……..big mistake.
Anyway, I found the hotel and had a cuppa in my room so everything in the world looked fine again. I then had to go out and find the venue for the morning which turned out to be much simpler. On the way back I ventured into Russell Square to sit for a while out of the way of the hustle and bustle and took a couple of photos….

More on the actual Conference tomorrow.


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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