Visitors to my home……

On Wednesday, I didn’t have to travel anywhere as people were visiting me at home.
My first visitors were due at 9am. It was a lovely misty hazy morning as I pondered what needed doing in the garden on one of my few days at home.

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Janet Woodhouse had introduced me to Nicky Sparling – Assistant Director of Quality and Improvement / Deputy Lead Nurse for the NHS East Riding of Yorkshire Clinical Commissioning Group (VERY long badge needed for that title!). Nicki had asked me to speak at the Governing Body meeting next Tuesday and wanted to meet first to decide on my topic of talk. Janet kindly agreed to come along to my house too to act as a prompt for me!

It soon became apparent that Nicki has a passion for including people affected by services. She believes that those who make the decisions on services should hear from the very people themselves, so it was very nice to be asked.

The Governing Body are the decision making people of the East Riding Clinical Commissioning Group so the ideal people for me to speak to about the lack of services for people with Young Onset in the area………some of its members are Gps, which will be a brilliant opportunity to corner hear my views…….

Janet was there to stop me getting carried away as I only have 15 minutes to put my point and take questions. The process is new in the area and I’m only the second person they’ve had speak to the group. Nicki hopes to get a group of us together along with key decision makers to make this the norm – perfect!

I could probably speak all morning to them and the list I was writing was becoming longer and longer as so much is lacking in the East Riding. So now I need to condense all the important points………..

Janet’s enthusiasm has always been without doubt but now I have a new playmate and ally so that’s doubly good. We agreed at the end that the three of us could easily sort out the region……..

Our main output of the meeting was really trying to encourage openness in this region so that more people with Young Onset will feel confident to talk about their experiences, after all, it’s only me at the mo and who knows how long I’ll be able to speak out. If there’s others like me, it will also take the pressure off me and allow others to put their viewpoint.

Looking forward to the meeting on Tuesday – just got to write 15 minutes worth now………

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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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