Final trundle of last week was to Luton…….

After the wonderfully different conference with the lovely dentists last Thursday, I left them at lunchtime to head for Luton for the final conference of the week. This time I was speaking at the Luton and Bedfordshire Memory Services Conference…….

I’d had to get everything ready for this week a fortnight ago so I was just hoping against hope that everything was in my pink file. I can only concentrate on one event at a time so couldn’t look at the paperwork until I’d actually got to Luton. If I’d have looked at that before finishing the Dentists event I would have got the 2 confused so times, venues and instructions would have merged into one and I’d have got in a pickle…….

My first mistake was at St Pancras station in London. I was booked on a direct train to Luton, no stops. But the way the man sent me, took me to trains that all had stops on the way. It was even a different train company than I was expecting. So I missed my booked train and simply got on the next one that arrived. Thinking about it afterwards, me thinks I should have gone to the upstairs platforms…..but hey ho….I got there….

My hotel was only 5 minutes from the station, but you have to start walking in the right direction for that to be the case. I don’t think I’ve ever been to Luton, so it was totally unfamiliar but my app got me there eventually……I just had to keep turning round as left and rights were getting in a pickle 🙄…..

It was a strange hotel…….no tea making facilities in the bedroom😳😱…..unlimited drinks but you had to go downstairs every time tou wanted one 🙈 but the staff were nice and helpful, especially when I lost my key card within minutes of entering my room 🤐…never did find it….the key was white, the linen was white and I just couldn’t see it 🙄

Aneeba had emailed me the night before with her mobile number and to check I was ok which was good.

The following morning I had a sore face 🙈…I remember something happened in the night and I’d become disorientated and think I must have walked into a wall or door or something – I just remember it hurt! So I had to send my daughters a black eye alert once more just to warn them 🤐🥴

I ambled the short way to ‘The Hat Factory’, our venue for the day……my app thankfully sent me in the right direction and they were busy setting up…so I sat quietly in my own world typing away. A Gp came up to me and asked me to sign his copy of my book – always satisfying when Gp’s have my book……

It was a strange room where we had the stands and tea as the walls were black curtains so very disconcerting….but Reinhard and Jacqueline Hussey soon joined me for a hug and distracted me…..

I had to take Reinhard’s arm to get me through to the lecture theatre as the floor was horrendous and I had to look up to the ceiling….


Who on earth thought this was a good idea for a floor….🙈

The lecture theatre was also very black so sadly it wasn’t very good for me……..

Aneeba started off the day with general housekeeping

Dr Sen Kallumpuran gave an update on the county services….and used the same sort of slides as Alistair Burns around Diagnosising well, living well and Dying well……which I’ve wanted changed for a few years now…..they trip off the tongue nicely, I just don’t like the phrases…..they were fine when there was nothing else but I think they need an up date now.

Dr Vaness Raymont then gave a talk on prevention in dementia – and the role of research.

24.6 million people in the UK have a family member of friend living with dementia. She said:

We have an increasing problem but we really havnt shifted at all in clinical practise” and

In the clinic we are focusing on diagnosis dementia but maybe we should focus on Alzheimer’s disease that occurs before Alzheimers dementia appears.”

The public often don’t think there is anything they can do to prevent dementia in the same way as they can with heart disease. But there are many changes they can make to reduce the risk. Me thinks this is true but also, if dementia decides it’s going to get you it will but by doing everything right, you’re giving yourself the best chance….

There has been no new medication since 2005.

She believes we’re tackling dementia too late, we should be starting before the clinical changes exist. To do this we have to have a better understanding of this disease. Clinicians and the public have to come to terms with the fact that this disease can be delayed or the risk reduced. So that would mean changing the culture which is not easy.

The ideal would be to start creating personalised prevention plans…..

I think this is where the biggest breakthroughs will be, as well as in imaging and the work of Nick Fox, me thinks the preventing and identifying risk before it exists is where we should be going…whilst not saying to the public if you do XX then you won’t get dementia as this is giving false hope and will cause bigger issues

The slides were rubbish and too many but the words she spoke were good………..why show slides where you feel the need to say, “ I’ll explain this as it looks very complicated’…..🙈🤷‍♀️ and “this is an old slide so it’s out of date’😳🥴

There was a good slide at the end for how all this work will impact on clinical practise, especially changing ‘memory clinic’ to ‘Brain Health clinic” but It felt a very medicalised view…..

Dr Jaqueline Hussey was up next, and me and Jacqui are both on the Young Dementia Steering group network…….she was there to speak about her work with Young people with Dementia in Berkshire……

Because numbers of us are relatively small, so commisioners often think there’s no point providing services but numbers may be small but our need is huge.

Gp’s often don’t record Young Onset so numbers really are guesswork……many people under 65 don’t want to go to ‘memory clinic’ or ‘old age psychiatrists…..Jacqui asked how many neurologists were in the room and there were none. We need to work together and neurologists should be here.

Age appropriate services are often non existent and run at the wrong time. So there’s a high unmet need. There’s little appropriate residential services and current ones that do often can’t cope with a younger age group.

Berkshire has now appointed their first Admiral nurse for Young onset dementia…..they set up the charity in 2012 (Young people with dementia in Berkshire ) to provide meaningful activity for those with young onset.

They wanted, in a world where there is little choice for people with dementia,  people to have choice. So they publish a prospectus every 6 months with various workshops they can attend….people are referred to the charity at point of diagnosis.

The variety of workshops was impressive from wall climbing, choirs, photography, to kata canoeing, running and cycling…..and many more…..

Wonderful work going on in Berkshire, they’re very lucky…..

Me next and once again I spoke about this that and everything, but because of the audience spoke about language more…….including the alternative delivery of diagnosis of ‘There’s nothing I can do”  to :

Yes, the diagnosis is that of Young onset dementia and not something anything would wish to have. But think of it as the start of a different way of living; a way of adapting. I might not be able to do anything for you but there is still so much you CAN do, albeit differently and with support.”

Reinhard, a Consultant clinical psychologist was after me and before lunch

‘Fear’ is what we see when you google dementia – the fear of getting it, the economic fear, the images fear etc…

He spoke of the fear imagery fuelling the stigma associated with dementia…..

He also spoke of getting to know the person and those around them to know who are the glass half empty people who will need more support and those with glass half full who will willingly accept strategies.

He spoke of the various tests they do or can do and knowing the best level of testing appropriate for each in individual…..it’s important to challenge the current processes and ask what the person would prefer – e.g. would the person prefer a Carer to be present during testing etc, there’s no one size fits all.

People need TIME when delivering information….professionals shouldn’t have to pack everything into the diagnosis process, all the information about signposting and packs of papers should be for another time and not simply because it’s part of the tick box process……we can’t process so much ‘stuff’ being thrown at us all at once. Nice one Reinhard….

It was also lovely of Reinhard to promote Dementia Diaries and the DEEP Network, showing slides of me and many of my playmates….

I spent the lunchtime selling my books and chatting to lovely people, One man, who works at the Memory Clinic,  came up to thank me and said:

“I feel like I’ve had a bucket of cold water thrown over me” such was the wake up call I’d given him…….☺️

Another interesting morning but, again, I had to leave at the end of lunch in order to get back down to London to get my train home at a decent hour but another worthwhile trundle to end the week…..

 

 

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. 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.

4 thoughts on “Final trundle of last week was to Luton…….

  1. I wonder how many professionals read your blog, Wendy. I think it should be compulsory because what you offer is usually very different and so it’s new to many people. That makes it even more valuable. Hope your head’s okay, and the black eye didn’t happen.

    Liked by 2 people

  2. There is useful data out there. NHS Digital publish every month the numbers of people with a diagnosis of dementia, including separate numbers for age 65+ and age under 65. So, for example – I know that (at the end of October 2019) there are 198 people in Leeds aged under 65 with a dementia diagnosis.

    This data is available for each and every GP practice.

    Of course there are people who were diagnosed when under 65, who have since had their 65th birthday. I’d say they are still experiencing “younger onset” dementia and all that means; but the numbers have been swallowed up in the aged 65+ data.

    So the data isn’t perfect, but it is useful.

    Liked by 1 person

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