Patient involvement discussion

On Friday I went down to London for a Department of Health patient involvement discussion. Unfortunately I can’t write in detail about it as I left my folder with notes on the table and merrily walked off without it………
This also led to me getting on the wrong train on the Tube and going in the wrong direction on the way back as my instructions were in the very lonely folder…….very brain cofuddling at the best of times but when you expect to be on the yellow line and suddenly everything in the carriage says the green line, it throws you right off track. Goodness knows how I managed to get on the green line – must have taken a wrong turning somewhere…….I’ve learnt not to panic though and just got off at the next stop, sat down for 10 minutes, stopped my brain rattling and started again. To my amazement I could get on the City line to Kings Cross – never been on the city line before so ‘every cloud’………..
They’ll know it’s my folder as it has my blog cards inside so hopefully someone will look after it until my next visit………
I’m typing this while waiting for the train back so I’ll tell you what I can remember about the meeting as it was very good and very enlightening on the whole process of drug licensing!

It was run by the Centre for the Advancement of Sustainable Medical Innovation (CASMI) and was led by Dr Siân Rees – Director of University of Oxford Health Experiences Institute. (old emails come in very handy sometimes….) The person asking the questions was wonderful but I can’t for the life of me remember her name or the rest of the people there – sorry!
We were there to be asked our opinion on a new approach to licensing medicines which would half the time it takes. It can currently take up to 15 years for a drug to be licensed which is crazy so they’re looking at shortening the process without compromising safety.
They wanted to know what we would want included in the package in order for us to be comfortable in taking part in the trials.
People were there with Parkinson’s, and then there was me and a carer of someone with dementia. It was very interesting to hear the issues had by those with Parkinson’s.
We all agreed that the principle of the idea was excellent but we would need assurance on all manner of things. My contribution was around the need for more intense personal support and monitoring if you were on the trial; the need to be able to report back real time via a secure method- maybe an app; need to have a named person to contact and the need to be kept updated on how the trial was progressing – both positive and negatives.

The meeting lasted 4 hours, but that’s about the amount I can remember! I’m sure many good things were said. They recorded the whole day. Two other such meetings were to take place with different groups – one re children and another re ……..mmmmm can’t remember that one….

They did agree to give us an update and let us know whether it was going ahead though…

Not a very good blog but the best I can do without my notes I’m afraid!!

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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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