BHiRCH Yorkshire Carer Reference Panel meeting

Yesterday saw me at my favourite university – Bradford. I’ve been involved with many projects there but don’t think I’ve been there for a while. Looking back through my blogs, I couldn’t find anything recently, so it must be ages ago.

Whenever I go to Bradford in the past, I’ve always bought my ticket at the railway station and then they immediately refund me on the day……….
Well, I havn’t bought my own tickets for ages and yesterday morning I frantically started looking round for my tickets and couldn’t work out why I didn’t have any😳
Luckily I always get up hours before I need to leave so I just sat and trawled though emails looking for clues……😩

I always keep the emails about an event until it’s passed and then I delete them all, so usually I have an email with the details of my train tickets and times……..that’s what was missing.

I then had to have a conversation with myself and what I did if I didn’t have tickets; how do I get them and where? I usually pick the pre ordered ones up from the ticket machine days ahead but I didn’t have an email with the code on for Bradford, so that wasn’t the answer………how did people get tickets if they didn’t get them from the ticket machine?
It suddenly dawned on me that the ticket office existed🙄….I had to buy my tickets from the ticket office………
Well that took me what seemed like ages to work out so I was exhausted before I even set off!!🙃 but I got there and worked it out thank goodness…….should have booked and collected maybe🤔……

I’m convinced this is what happens when others do things for you. Those fine threads of memory get more frayed each time someone performs the task for you until eventually they’re cut and the memory disappears for ever.. You’re then unable to do those things for yourself.

For the kindest of reasons supporters take over and do things for us but then are actually causing so many more problems for themselves. Enable us to do things for as long as is possible, even if it means finding a different way……..end of my sermon for today😂

Another case of ‘use it or lose it’ strikes again……..

Anyway panic was over so I got to the station and bought my tickets. Yesterday was a gorgeous day. The sun was shining over the Humber…..

It was then that I went and sat next to the lovely Ola Colin and his wife Lizzie who were also going to the meeting.. Colin has PCA(Posterior cortical atrophy)We chatted all the way to Leeds so the journey flew by.

Once we got off at Bradford we met the lovely Barbara Woodhouse Carlton! And trundled our way up to the University only to have it snow on us on the way up the hill😳🌨☃

And even more familiar faces when we got there, as also on the panel was Sandra and Geoff so I couldn’t resist the opportunity for a piccie….

Prof Murna Downs also appeared to say hello, so lots of smiley faces.

Barbara opened the meeting and we went round with introductions.

Katherine Froggart did an overview of the study to remind us why we were all there🙄

It’s a project based in Care Homes. It’s trying to see if hospital admission can be avoided. The aim is to help care staff to identify conditions, that if picked up early enough, will avoid the need for a hospital admission. The 4 conditions are:
Acute exacerbation of congestive heart failure, respiratory, Urinary tract infection and dehydration.
Looking at what staff skills staff need to be able to improve the healthcare of residents thus reducing hospital admissions, which in itself causes problems.

The research is across 14 care homes in 2 areas – Bradford and other northern areas and London – 2 very difficult areas but I think will give a richer outcomes – 2 very different communities. This is just the pilot study with a bigger 5 year study hopefully following.

It’s a pilot because they need to know can the intervention be delivered as intended – will it work?
It was important to get Care Homes, staff, residents and family on board for this to work.

They’ve learnt lots from the feasibility study, so are on solid ground for the pilot.
In the pilot 8 care homes will be in Yorkshire and 6 in Greater London. Some will have the intervention and some won’t ad will last for 16 months in total.

Lunch was lovely and gave us time for a group photo for Twitter….

The afternoon started with Katherine talking about their launch events into the care homes. They asked if we’d be interested in being involved in the launch event👍

Another exciting opportunity is our involvement in data analysis. Commenting on their findings and the data collected which sounds fascinating but who knows what I’ll be like in 18 months time, but fingers crossed.

Katherine then went onto PPI Evaluation Summary – we have very experienced PPI. Between 2-20 years involvement. We all got involved for a variety of reasons and 2 people stated ‘to keep their brains active as a reason……I’m sure one of them would have been me🙄
It sounds an amazing project – I’d forgotten the detail until today about why I was involved but am really pleased with the progress so far as it has the potential to transform care in care homes.

Me, Colin, Lizzie and Barbara walked down to the station in lovely sunshine this time and took the train to Leeds where Barbara left us and went on her way. It want I had the lovely company of Colin and Lizzie on the journey home so I didn’t even need a window seat as I could take a picture of them sat in front of me….

Such a nice day….

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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.

7 thoughts on “BHiRCH Yorkshire Carer Reference Panel meeting

  1. So sorry not to have been with you all at the Bhirch meeting Wendy. Loved the photo’s you have taken, so lovely to see everyone. Thanks for all the details of the meeting, very helpful for me as I need my memory refreshing – I’m not as good as I used to be, old age! Thanks again for sharing. Viv x

    Liked by 2 people

  2. Your ‘use it or lose it’ sermon of the day was brilliant as usual Wendy. Such a vivid description of the sequences you took yourself through to retrieve the mislaid threads of memory.

    Liked by 1 person

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