Speaking to those who hold the purse strings……

Today is World Alzheimer’s Day so it seems appropriate that today’s blog is about highlighting the post code lottery that exists with regards to services for those of us with Young Onset Dementia…..

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The CCG’s Governing Body is responsible for the formal decision making for the organisation, which is responsible for buying and planning (commissioning) hospital, mental health and community health care services for the people living in the East Riding of Yorkshire area.

Nicki Sparling, Assistant Director of Quality and Improvement / Deputy Lead Nurse of NHS East Riding of Yorkshire Clinical Commissioning Group (long name badge required!) asked me to talk to my local Governing body yesterday.

So this exhausting month continued…..It was another wet miserable day – I don’t think the rain had stopped since the day before which was very disappointing. We’d been spoilt over the summer so wet weather had come as a shock a and my flowers were looking decidedly bedraggled……

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However, Nicki had agreed to pick me up from the village and arrived in time to take me for a cuppa at a nearby hotel prior to the meeting – so well deserved brownie point earned……

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We chatted mainly about our cats and I was very jealous when Nicki said her cat wears a bow tie – imagine the wardrobe I could have for Billy if he agreed to wearing one! However, me thinks that Billy would move home and go find a new owner if I attempted such attire……….

I digress……..we drove the few hundred yards to the NHS headquarters and were soon waiting outside the room of the meeting. The public were allowed to attend so once everyone was seated the chair welcomed me and everyone introduced themselves- many Gps were present which was useful…….

Once Nicki had introduced me, I spoke for 15 minutes around my experience of services since moving to the area. I spoke around the denial that Young Onset Dementia existed in the area as there was nothing…..how we have very different needs to those in the later stages……..my experience at Hull Royal and my GP ………the fact that there is no designated clinical lead or pathway and that if I had cancer or had a stroke there would be a clear pathway to follow so why not with Young Onset?

I suggested how health and social care organisation, both public and voluntary should sit round the table in order to pool resources in order to share the financial strain.

I ended by talking about language and finally about engaging with us in service design, not pretending we don’t exist…..

The silence in the room when talking is always a good sign and there were several people who asked questions at the end – not that I remember what they were as I wasn’t typing, but they were good questions, I think……

Who knows whether this will just be an exercise in public involvement and I don’t hold out much hope of anything changing. All I ask initially is that a dialogue takes place. Some one came out at the end to say goodbye and said how he thought there was only 40 people in our region with Young Onset😳 so why I have heard and seen a much higher figure documented? ………NHS data is always questionable – I would love to know the true figure…………..

Nicki too me back home and a conversation about cats ensued once more…….😻
There was a lovely print in the hotel depicting Hull’s year of culture…….a nice way to end ……..

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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.

2 thoughts on “Speaking to those who hold the purse strings……

  1. Reblogged this on memorylanemusings and commented:
    Young Onset Dementia is a hugely under-resources field. In my previous role, we started our own service for the cohort of under 65s as there was nothing for them in our patch. The Occupational Therapist run group is still running weekly. Sadly, the monthly carer support group is no longer running
    X x

    Liked by 1 person

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