Meeting someone who can help……..

Yesterday morning Janet Woodhouse had arranged for me to meet the new Dementia Lead Nurse for the Acute Hospitals in my area regarding my unresolved saga with the Hull Royal…….
History – I was meant to have a second appointment with the neurology department after my horrendous experience earlier in the year. However, a farce ensued and I ended up being discharged. The issue really stems from the fact that you have to phone when you can’t make an appointment that they send you by post………
For those that know me, the phone is my worst enemy now and is very difficult to manage as I can’t see the people and the people can’t see me thinking of the words to say.
I did try though. To cut a long story short, I turned down the first as I was on holiday, they cancelled the second and then sent me an appointment at the wrong place……when the replacement appointment came by post it was on the same date as the first when I was on holiday…….🙄…..I tried to ring but the date they offered, I was elsewhere again. When I turned that down they said they had to discharge me as I’d turned down 2 appointments and was meant to keep myself free😏

At this point I gave up and stopped arguing, as I can’t by phone.

Anyway Janet heard the story and that’s how the meeting today came about – hope you’ve kept up with all that!

Janet and me!
Janet and me!

It was a rubbish rainy day – we havn’t had one of those for ages, so it came as a shock…….Janet kindly offered to come along with me so picked me up in the village.
We met Suzy in the café at Beverley hospital, so she immediately gained a brownie point by offering to get me a cuppa.

We sat and chatted about the task ahead and what me and Janet had been up to.

We went through my experience in the neurology department at Hull –the lack of smiley cultured etc…. My main recommendation was for email contact to be an option as well as the phone – not everyone manages the phone and those working can often find it difficult to find time to ring. Suzy took that away as a possibility to introduce email as an option for making appointment requests as she thought that seemed an obvious solution in these days of technology. TICK😊

We then spoke of my meeting with PALs and the concern this raised – it’s ok to have a resolution plan but if no one follows it through there’s no point in going through the process. I was promised contact from them to be involved with Hull but no contact has been forthcoming……..

Regarding my appointment with Neurology, Suzy asked if I would go to Hull if she supported me through the process – it was a generous offer and at least another starting point. TICK😊

Suzy then talked me through their new draft Dementia strategy for the Trust and asked if I’d scan through it and comment.

I added that it was very important for staff ,managers, HR and Occupational Health to understand that dementia affects people under 65 and to be aware of how to support people at work. I love the little video made by the fit for work people

It was also very important to include people with dementia in recruitment and in projects from the start – not asking what they think of something once it’s finished.

Suzy finally asked if I’d be interested in being a member of the Trust Dementia Programme Board as currently there are only 2 carers represented…………we did talk at length about how to get more people with dementia involved and what a great resource we are……. luckily I’m free for it’s next meeting in November……….I did say that I’d be more than happy as long as I can talk as well as listen………I’m not very good at just listening as I don’t usually like what I’m hearing…………

It was nice to be in the room speaking to the converted – I didn’t have to convince Suzy of the value of anything as she got it. Janet has always got it so now I have 2 partners in crime to sort out the region – excellent!

Me and Suzy - note how smiley faces are the norm for the 3 of us.........
Me and Suzy – note how smiley faces are the norm for the 3 of us………
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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.

5 thoughts on “Meeting someone who can help……..

  1. Well done. Let’s hope they roll out that strategy in all Health Trusts soon. Actually I think they should agree that anyone can contact by email, irrespective of age or whether they have dementia. It’s so much easier to think when emailing (at least I think so) and that way everyone knows the facts, as it’s there in writing. Well done again – you are brilliant and are helping so many people. x

    Liked by 2 people

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