A Diagnosis is the Beginning of a Different Life…….

That was the title of the talk I gave on Wednesday at the Annual Humber NHS Foundation Trust Research Conference. The Conference was:
‘Developing a City of Research”

Always a nice change to do something local and I love working with my local research team, led by Cathryn Hart. Cathryn had asked me sometime last year I think!

After Tuesdays sunny weather, Wednesday was cool and cloudy. Alistair Burns was due to talk after me and the day before there had been last minute requests from the local TV company. Having me and Alistair in the same room was an ideal opportunity to talk about next weeks Dementia ACTION Week.

Anyway, Gemma was driving me there today and arrived as planned and we drove to a nearby venue……no taxi, no bus, no train required……..ahhhhhhhh

We arrived to be met by the lovely research assistants on the registration desk The amazing Alison – administrator extraordinaire……… immediately apologised as the hotel venue did NOT serve Yorkshire tea😱. In fact several people came up and apologised🤣 – obviously no brownie point for the hotel but one for all the apologies…….🤣😂🤣

Everyone started to arrive and the hall began filling up…….it was a sell out so the room was very full.

Lovely to see the cover is a painting done by someone on the Journeying Through Dementia Study

Chief Exec Michele Moran opened the conference…..she gave important detail, like the hashtag for twitter:) and the fact that it’s the NHS’s 70th birthday in July. She spoke of the raffle that’s going on throughout the day to win my book! And all proceeds are going to the Humber’s charity, Health Stars……

I started off the conference and had 25 minutes where I said amongst other things…….

The day before I was diagnosed, I was working full time in the NHS, the day after being diagnosed I was working full time in the NHS.
Nothing changes overnight, so why are we made to feel by so many that it’s the end?”

I finished by reading a couple of extracts from my book

After me was Alistair Burns on the “Challenges and Opportunites of dementia…..”

He spoke of dementia being the most feared illness in people over 50 and how dementia rarely travels alone with people having another long term condition; When you’ve met one person with dementia, you’ve met one person with dementia and it affects people in different ways……..

It was sad that everything Alistair said was very familiar so I must have heard him say it before………shame there was nothing new and no ACTIONs just words…… he spoke of ‘supporting Clinical Commissioning Groups’ but it always appears that CCGs are under no obligation to follow best practice……he showed a slide on Post Diagnostic Support available from NHS England……..

Guidance on what support should be available’……….just words……

……..simply words……no ACTIONS spoken of at ground level…….

At the Q&A bit, I said how next week was known as ‘Dementia Awareness week’ and is now ‘Dementia ACTION week’ as we’ve heard so many words and had so many promises, but next week is the time to turn words into ACTIONS……….no response from Alistair……

Before a tea break it was the turn of Professor Joanne Reeve from Hull York Medical School on the ‘Quiet Revolution – Reimaging Primary Care……’ moving away from the medical model and working towards Continuous, Comprehensive, Coordinated Accessible Care………Recognising health as a resource for daily living…………Person centred care in primary care is in decline but at the new academy of Primary Care – they are focusing on person centred prescribing,

A wonderfully refreshing talk – huge brownie point for Prof Joanne……….implementing new ways of working..changing practice through research in practice. What’s happening on the ground doesn’t often reflect guidelines…….developing and amending implementation as it’s being done on the ground requires a shift from evidence based practise to implementing evidence as it’s happening. She gave a wonderful quote around this but I wasn’t quick enough to type it down….🙄

Such a great talk….

Time for a cuppa……but before I could get one I was whisked away to do a quick interview with the local ITV Calendar, but someone made sure a cuppa followed……..🤯…..In the interview I spoke about next week being Dementia ACTION week and about our course in York not taking any clinicians off the floor …….designed by and delivered by the people who can help newly diagnosed the most – people with dementia……..how we need something similar in the East Riding…..

We spoke for a while so it’ll be interesting to see which snippet they use……

I was taken back to the room with a second cuppa…….

I felt a tad discombobulated from all the too-ing and fro-ing so seemed to switch off as I havn’t typed anything. Usually this happens around 2pm but it was only 11am😳– maybe I was just drinking my tea during the next speakers before I left or maybe I just wanted to sit………

Cathryn ended the morning session by showing a celebration film of all that the research team had achieved in the last year…….I did have to listen with my fingers in my ears though as it was very loud but it was wonderful to watch and nice to see some familiar faces, including my own! But more so, to see Colin and his wife talking – Colin is a dear friend who I havn’t seen for ages so it was lovely to see him speaking……

Before I left, I got a lovely bouquet of flowers and pressie from Cathryn Hart……..

Always good to see local teams celebrating local achievements……

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 “A Diagnosis is the Beginning of a Different Life…….

  1. It is the beginning of a different life, you are right.
    My husband was diagnosed in November 2017 although we knew for at least five years earlier that something was different! At the diagnosis meeting we were given a thin brochure and sent away. No guidance, no assistance, we have just had to get on with it. We live in West Yorkshire in an area where there is very little support. We cannot go to the Leeds groups as they are too far away, and the Wakefield groups, although only three miles away, say we are on the wrong side of the motorway. We just have to get on with it and manage ourselves. Life is different but we are doing our best to make it wothwhile.
    Support for people like us is just not there but we will go on doing all our usual things and living a happy life.

    Liked by 1 person

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