Category Archives: Involvement

Communication Workshop……..

Last Friday, my long week continued with a workshop in London at the Alzheimer’s Society Offices.

It was an early 6am start again but at least I would be travelling on one of the new Azuma trains from Hull, instead of the old rickety version we used to get so it should be comfortable…….

The taxi man arrived – the same one had picked me up all week so he was curious to know where I was going today …..

Trains behaved and were on time and once we got to Hull I settled into my seat for the trundle to London. A bird was flying with purpose along the waters edge

And the sheep were ambling along the shores finding their spot for the day……

All was right in the world when suddenly the proverbial “grumpy old men” appeared, who would be looking after us for the journey. They seemed to relish in the competition to see who could be the grumpiest. These two staff have often been on this train when I’ve travelled and are often grumpy….but today…..well maybe it was because it was Friday as they were particularly grumpy.
Never heard so many sighs when customers asked a question……🙄🙈 I was the last in the carriage and knew my request wouldn’t go down well…..so started off by saying…..

“Is it grumpy Friday?”

A half smile appeared on his face…….”I’ll cheer up later”………was his response, but at least I didn’t get a sigh……a smile really does cost nothing……

Anyway after that, the journey settled down and I got on with staring out of the window and enjoying the views…

I then promptly fell asleep and woke up at kings cross….😴😴 💤 it’s been a long week…🙄

I arrived at Tower Hill to find a lovely group of amazing thistles with the Shard in the background …

Arriving at Crutched Friars I went upstairs and immediately met my lovely friend Barbara Woodward Carlton and we trundled into the Kitwood room

We were here to find best ways to communicate the Research Network. After we all introduced ourselves Shirley gave us the amazing news that it was 12 years to the day that the Research Network was born………wow………

There were 8 of us, but sadly only me with dementia, not sure why. Maybe I’m the only one on the communications sub group.🤔 I always feel a little anxious when I’m the only person living with dementia at these sort of things……felt a bit out numbered…….maybe it was just my mood that day….

We currently have 322 Research Network Volunteers – 15% of people living with dementia, so we have to find better ways to communicate this amazing volunteering role and make it interesting and appeal to more

Anna -Louise Smith, Research Engagement Manager led the session along with Ciara Lihou.

We have to make people see how research can bring the future closer, how personal stories create a different view of research…..

We all went round to say what works for us and how we get invites to speak at events, the type of events where we talk about research. We all do a variety of things off our own back and some directly for the Society, others for other organisations and groups.

We all spoke of what has worked well and what hasn’t, where we think improvements could be made and what circumstances we could promote the research network further…..

After lunch, we had Gregor, the Business Manager for the Research section, working at strategic level but also with those who do the work on the ground. He was there to promote story telling as a different way of talking and encouraging others. He was an actor in his former life

How can we use story telling to better engage with the public and researchers. We tell stories to personalise and get over a message. I said how I used to use Mr Men stories to show my daughters how they weren’t alone when they had fears. We had sooo many of those books ☺️

We spoke about the difference between telling a story in the past tense and telling it in the present – e.g. I am a 5 year old boy or Once upon a time there was a 5 year old…….

We had to chat in couples, about what was unique about ourselves. Me and Monica struggled with that as we said the word was wrong, we’re only unique in our genetic make up but we all have ‘different’ stories…..

Emotional engagement is made easier through nuggets of story telling.

However, the day went very sad for me at this point…..Now I’m not writing this bit to beat anyone with a stick as Anna and Gregor are kind people, but today they got it wrong for me. Maybe someone else with dementia wouldn’t have found the next bit a problem but it couldn’t have been worse for me.

Gregor said he would relate a story and we had to pick up certain elements…..well for me after each word is spoken they float away. The detail gone and all that’s left is emotion. But the overriding emotion was one of inadequacy, of feeling stupid as it was such a short story.

What finished me off was him asking us next to write down words related to it and I find writing very difficult nowadays, the coordination of the flow of once beautiful script now gone and am now left with a scrawl, again making me feel stupid.
Some people may think it’s because I type all the time, but I also write everyday. I write my shopping lists, I write notes; some I can read, some I can’t; that’s how inconsistent my writing is.

None of it was intentional by any stretch of the imagination, they just hadn’t thought to check or thought through the exercise carefully.

I left the room as my eyes were filling up and I just needed to hide away for a while. I went back in and Anna offered to help by writing for me and talking it through but sadly the emotion just overtook me. Maybe a long week had left me feeling vulnerable. I can no longer feel annoyed or angry, jealousy – all those emotions, dementia has taken away from me – so all I’m left with is happy or sad, so sadness just overwhelmed me on this occasion.

Maybe if it had been the beginnng of the week I could have explained why and what they should have done. Maybe if other people with dementia had been present I would have felt they would understand. But today the emotion was too much for me and I had to leave early otherwise I would have disrupted everyone else with my tears and I didn’t want to do that.

Instead of going straight to the station, I went and sat by the river for a while enjoying the calmness and smiles of those around

It was a valuable session and Anna emailed me straight afterwards to ask for help in doing it better next time, so lessons were undoubtably learnt. As I’m saying I’m not writing this to criticise, but simply to make a point that when you’re including people with dementia in anything, please check that the content and methods will work for each and every one.

First of Two lovely days at Woodbrooke……….

Yesterday I was heading to Birmingham for the lovely peaceful venue of Woodbrooke. We often use it as a meeting place for Dementia Enquirers because of it’s tranquility, simplicity and beautiful surroundings. So it was my playmates along with Philly and Rachael from Innovations in Dementia that I was heading to see.

However, my first task of the day was an early appointment at my dentist. I’d been having real problems with my jaw (yes, I know I talk too much…) which has been causing a moon shaped pain from my head down the side of my face. My original dentist really wasn’t very good or very nice so I moved to Gemma’s dentist in Hull, who happens to specialise in jaw problem. I was suppose to have a batch of treatment in May but I just couldn’t find enough free days🙈, so we started in June. He hadnmakes a splint which aligns your jaw better – I think. He is sooooo meticulous in design, measurements, remeasuring. My problem is that you have to go several weeks in a row😳 and that’s even been a tad difficult to organise in June, hence the 8am appointment before I caught the train to Birmingham, my last but one appointment.

I’m sooooo glad I squeezed appointments in as yesterday I was totally pain free…..🙌❤️….he made more slight adjustments but hopefully we’ve cracked it……🤞That’s obviously the ‘royla we’ as it’s his amazing skill that has made all the difference.

Anyway….after the dentist I caught the bus into Hull town – forgetting that it would be rush hour with everyone going to work…🤯…but got to the station in time for my first train to Sheffield.

The promised rain had arrived in abundance overnight and was due to be torrential until Thursday but at least it had eased off for me to take a gloomy Humber ….

The worry on this journey is…….there’s only 7 minutes between arriving at Sheffield and my next train departing……and I know there’s a bridge to cross…..😳🤞

Well one side of the lift was working, thankfully going up! And I made the train with a couple of mins to spare. Sadly this one is my least favourite train company’s . Always very chocca, very squashy, little space to put luggage and plain and simply rubbish………..🙈

Anyway got to Birmingham and immediately found Rachael. We then stood and waited for Agmes but when she finally arrived it turned out that Assistance Travel hadn’t met her…..😔…another reason why I’m reluctant to use it……….However, Tracey had an even bigger problem in so far as her train had lost power due to a fire on the overhead wire at Milton Keynes. So me and Agnes shared a taxi

Philly met us, we had lunch, found our rooms and settled in and made our way to the Art room where we’d be working.

Tracey finally arrived an hour and a half late but we were all here, Howard and Mairi making up the group of 5……..we had 13 proposals to review in order to send our recommendations to the National Lottey Fund.

We had 10 minutes for each project to discuss the pros and cons. We then scored each set question to find a score out of 150…..

We had so much laughter but some excellent comments and observations. We started off slow, taking 30 mins for the first one so Philly started cracking the whip to make us faster, inbetween laughing.😂

There was such a funny bit. Philly was adding up and keeping the scores……Now remember the most any one could score is 150…………so it was hilarious when Philly announced the second one had scored 162 😂🤣😂🤣….we didn’t allow her to forget that for the ones that came after….we were all having a happy time whereas Philly was exhausted from all the adding up! 🤣

We made such a good team as we were all looking at the proposals with different eyes and from different perspectives……seeing different sentences and different words.

By the end of number 5 we were ready for a short break so we went to get a cuppa.

We speeded our way through the last batch of 8 and had to keep schtum when our group proposal came up.

Poor Philly was getting brain ache from all the maths

With 2 to go, we were all flagging but determined to finish before meeting our advisors at 6 and before supper at 7. We.

Finally ………We finished!!!!! 🙌🙌🙌🙌🙌🙌🙌🙌🙌

Me and Agnes decided that if we went to our rooms we wouldn’t surface again for the rest of the evening……….🙄…so stayed to welcome our advisors. Dawn Brooker, Tom Shakespeare , Rosie, who helped with the research pack, Dave, from the mental health side and Dawn also brought a PhD student who has an interest in hyperacusis, so me and Agnes were well pleased……

We went through the process and said how we respected each other’s views and opinions. We showed them the draft copy of the Research Pack to be handed to each group.

It’s a great booklet as a starting point as starting a research project for anyone is daunting and for people with dementia even more so……our advisors even said how it would be wonderful for their students!

Supper time was a really welcome end to a very, long but wonderfully productive day……..and I sadly had to admit defeat and took my banging head to hibernate in my room for the rest of the evening………I’m a bit like a Duracell Bunny….and my batteries were definitely flat……who knows what Day 2 will hold……

A Day at the Royal College of Nursing………

Yesterday I trundled down to London at the invitation of the Royal College of Nursing. I’d been invited by Admiral Nurse, Rachel Thompson to be part of a small focus group to help update the RCN Dementia SPACE principles.

SPACE principles have been used in hospitals to improve care for people living with dementia. They needed to update the principles so they can be used in other areas – wonderful and about time……….

Anyway the morning was very misty and murky as the taxi trundled through the Westwood

Likewise a spooky veil of mist hung over the Humber hiding the tip of the bridge as though it hadn’t quite pulled back the bed covers……

The early morning train is often nice and quiet even when busy as people nap and simply sit or are frantically catching up on work emails. Even the train managers announcement sounded quiet as though he was just waking up too……So I’m able to stare out of the window with a quiet brain requiring no activity. A good start to the day.

As we neared London, the sun decided to throw back the covers and greet me shining brightly.

I got the tube to Oxford Circus and wandered in the sunshine to Cavendish Square. Outside stood Rachel and Deirdre and we went in and saw a nurse made of Lego!!!

Upstairs we were joined by Dawne Garrett from the RCN who is the lead for the RCN for Dementia Care, Maureen, Sarah, Susan, Deirdre, Nikki from the RCN and the lovely George.

The Royal College is reviewing their SPACE principles and underpinning statements (top 5 ingredients to support good dementia care) Rachel had designed a very good pen which had a banner which pulled out of the barrel, on it saying what SPACE stood for…

This is one of a series events and they’ve started with us and will then be going out to hundreds others after our early input.

We started off with an ice breaker and chose a picture card that describes us. I chose a row of colourful beach huts, simply because the colours appealed to me.

So after simple introductions with the pictures we began. There were 3 of us living with dementia, 3 supporters and 3 from the RCN – perfect mix!

Rachel then gave us some background of the SPACE principles. Originally funded by NHS England. When they began it was a very different time – about 10 years ago. They asked people what needed to happen to make the experience in hospital better……..we all know how so much more needs to change, hence the update now.

Dawne spoke about introducing the principles to Care Homes with some adaptions. There are more beds in the Care Home system than in hospital so introduction here is also key. Some of the language didn’t quite work for Care Homes. So they want to widen the use of the principles into Prisons and Hospices also.

Three extra areas are being looked at as additions now – Post diagnosis support, Engagement in Research, and End of Life and Care planning. They also want to include information and advice on risk reduction for people. So telling people what might help reduce their risk of developing dementia.

Nurses are one group of unhealthy professionals – patients often bring in treats, which nurses tuck into because they don’t have time to take breaks, they do shift work, drink more, smoke more and are stressed. So nurses are a good place to start the risk reduction.

So we’re here to broaden out the use of the principles. They’re not mandating a process, but they are showing good practice which is available to anyone, anywhere. It’s up to individual Universities whether they include them in nurse training. Good Universities will see the need. They don’t ‘have to’ teach about anything, they individually decide, that’s why dementia does not figure largely in most courses. ‘The wise ones’ do.

Dawne then split us into 2 groups. So me, George and Deirdre in one and supporters in another.

We first looked at the ‘Staff’ principle….our first question was to question ‘What is good quality training’? They need to define. Those who have contact with people with dementia of any profession, need far more than ‘awareness’.Rachel mentioned the “What Works” project from Leeds Beckett.

Next up was the second principle, Partnership: Just needs to be  more specific in certain aspects.

3rd principle was Assessment and Early Identification. My first thought was that if theye’re promoting early diagnosis, then ‘services’ may not be key, but practical advice might be. Again the wording needed tweaking. George also mentioned that we should all have a Care Plan and none of us round the table has.

Principle 4 – Individualised Care. We added 5 steps to wellness and peer support.

We were a tad discombobulated or at least, I was, so we stopped for lunch and a cuppa. We chatted about this that and everything including the ‘Casualty’ storyline.

Once all fed and watered we came back together again and went through the notes for each principle from each group. It was such an interesting exercise and always is when people living with dementia and supporters are brought together. I’d stopped typing for this bit as my head was finding it hard to concentrate now. It was a lovely group with lovely people, all very relaxed and all listened to………

It was lovely and bright as we made our way into the sunshine. After our goodbye hugs, I stood a while and just caught up on messages and checked where I was heading for next. Good job, as I’d told Rachel I was heading for Manchester. Goodness knows why but I suppose I am often heading there but I was heading for Blackpool ready for me talking to a group in Fleetwood on Thursday 🙄. I can only cope with one event at a time, especially when they’re back to back……🙈
Today was also the first outing for my new best friends. I’ve finally found some ear plugs that help. Thanks to my friend Sandra for sending me a link to them. Yes, expensive, but they were brilliant ⭐️

Involvement…….my Sudoku……

Yesterday I was at an event at Bradford Uni . I’d been asked by the lovely Clare Mason if I would talk about my experience of involvement and about my book.

I’ve said before that I call all my involvement, all these events, my Sudoku. It helps to keep my brain exposed to different conversations in different environments. This ‘doing’ I truly believe has stopped me progressing as quickly as I could have. That’s why I get anxious when seeing people sat doing nothing for hours on end and why I believe many people progress quicker than they need when they enter a care home. Obviously some are very good at keeping people active, but many more have yet to learn the value.

I know first hand how wonderful simply sitting with your eyes closed makes you feel, but I also know how dementia slips in through your closed eyes which is why I have to fight the urge to ‘sit’ and keep doing to keep dementia at bay.

Anyway, my ‘doing’ for today started with a lovely taxi ride to the station with one of my regular drivers. He was telling me all about his next project of travelling the canals of the north in a small barge. I told him as I got out to make his dream a reality…….😍

It’s the Easter holidays for schools at the mo so trains are filled with different people. Full of fraught parents entertaining excited children.

There was a misty haze over the Humber as we trundled passed……wishful thinking might call it a ‘heat haze’ but me thinks not…..

I arrived at the Uni to be surprised by the quietness. I’d forgotten it would be Easter Break for most of them. I was relying on asking them to show me the way to the venue! 😳However, I needn’t have worried as I soon spotted Clare’s Forget me Not signs on the lamposts showing us the way. I arrived to find Clare setting up all ready and people drifting in. The tea and cake were all ready

The lovely surprise was seeing my playmate Julie Hayden from West Yorkshire.

Lots of people came up to chat and say hello, so lots of hugs and cuppas. Professors Murna and Jan popped in to say hello. One Occupational Therapist had come just to hear me talk and buy my book 😳☺️ and many of the lovely PhD students were there. One person came to say hello who is apparently giving me a lift to their event in Burley in Wharfdale in May! Should have taken a piccie of her 🙄……..

One woman came up to me and when I asked what her connection was with dementia, she said, no connection, she’d come because she was interested to hear what I had to say.😍
She was due to have her 10th birthday of being cancer free next week, which was certainly something to celebrate and how I look at life helps so many others living with dementia or not……how kind ❤️

Clare said that on every table there were 4 people living with dementia – simply wonderful and a credit to Clare as she is key to people being involved at Bradford.

The lovely Vasileios, with his wonderful smile and cheery Italian face came to say hello. He is a researcher on the Angela Project (their aim is to improve diagnosis and post-diagnostic support for younger people living with dementia and their caregivers) and they will be releasing their findings from this very important study in the late autumn. Really looking forward to hearing what they found. You can read more here:

https://www.ucl.ac.uk/psychiatry/the-angela-project


Clare starting it off….

Once everyone had arrived it was my turn to speak – I didn’t realise that I was the only speaker 😳. I spoke about the importance I place on involvement by saying amongst other things:

Many people have asked me why I think I havn’t progressed as quickly as some……well, I think there’s a variety of reasons, but the main one is that I’m far busier now than I was when I was working full time but in a different way, but in my way at my speed.” 

I finished off by reading a short ‘Billy’ extract from my book to end with laughter……

Everyone was very kind with their comments and questions. One supporter spoke of how involvement made her feel valued. She’d had to give up work but this gave her a sense of value. I always say, the voices of people living with dementia and supporters are equally important. I said how our lives often run in parallel with very different needs but both needs are non the less important.

Many people came up afterwards and asked me questions, which again is always nice as not everyone likes to ask in front of everyone.
They were a wonderful group of people. I always love going to Bradford – they just get it…….😍


I always feel part of the team at Bradford⭐️

Collaboration with the BBC TV ‘Casualty’ Programme……..

Last week my involvement with the BBC TV ‘Casualty’ storyline was mentioned on “This Morning”. You can listen to the few minute interview here

One of the main characters, in this long standing hospital programme, ‘Sister Duffy’, is finally diagnosed with  Dementia. Although, I’ve been involved for some time, I couldn’t write a real time blog about my meetings as it was top secret in the TV world.

Anyway, now the story is out, I can put together  the blogs I wrote but didn’t publish (big letters next to them of DO NOT PUBLISH), to tell you how my involvement came about…….

So for me it all started about a year ago, when my book first came out. However, the storyline was already being researched with Dementia UK as well as my lovely friend, Suzy Webster, whose mother lives with dementia – and those are the ones I know about. It was at Suzy’s suggestion that they actually contacted someone with dementia. Since my book had just come out, I was in the media a bit and I imagine this was how they came upon my name.

I don’t remember how or when I was first approached but here’s what I typed at the first meeting…….no piccies, as I can’t be trusted not to share those 🤣

……………………………………………..

Well Monday 11th June 2018 was our first face to face meeting. I trundled down to London to meet the Story Producers and the Story editors. The planning had been meticulous and Beth, one of the editors had been so careful in arranging travel and the venue. Beth said in an email:

I’ve been informed by a friend that it’s a nice place and quiet on weekdays. I’ve spoken to the staff and they have assured me it’s pretty chilled at lunch times and have set aside a booth at the back for us.”

I even received a walking map from the station or they would have met me at the station and walked with me.

The perfect start.

Anyway, it was a gloriously sunny June day, probably far from the weather when I can finally reveal this blog! – (ha! Very funny as I didn’t know back then when I would reveal it)

I used the map and en route had a txt from Beth to say she was sat outside the café waiting for me. I was met by 3 lovely people in a wonderfully quiet café, with a table reserved for us at the back. It felt like we were as far away from the hustle and bustle of Kings Cross as we could possibly be. Yet outside the café was the usual chaos of the London street.

The icing on the cake was to see they sold Yorkshire Tea……..❤️…..could the day get any better……..⭐️

We sat for a couple of hours, discussing likely plots and plans for inclusion, with them making various notes and asking many questions. I didn’t type on purpose so I wouldn’t give anything away. I remember little of the conversation. What I do remember is being in the relaxed company of 3 wonderfully warm and kind people, all willing to listen, learn and contribute their ideas. “

……………………………………………….

And all was going fine, with scripts being sent for me to read and comment on, but then things started to go downhill………

Such is the world of TV, that teams change, writers change, and I suddenly felt uneasy with the way the storyline was going. All this time, I was in contact Beth Grant, the story editor, who has remained a constant during the process. She is also a lovely, lovely person. I decided sadly to end my involvement and I thought that would be the end of it. Many promises were made that never came to fruition. Can’t remember what, why, the timescale or the detail, but remember feeling very sad.

Then a few months ago, (probably 🙄😂)I received another email from Beth asking if I would reconsider joining them again. Amidst many changes, she thought I could, once again, influence the writers.

And so it was that we met once more in London at the same café that served Yorkshire tea 😍

Someone new with her this time who had also read my book, one of the writers. I felt a different atmosphere from the last few months, a need to get things right and hopefully listening to what I was saying. I didn’t type much on this occasion as the proof would be in the scripts I was sent as to whether any notice was being taken.

As the scripts came through I began to feel happier. I didn’t and probably won’t meet the actress playing Duffy, which I find sad, but then someone said to me how some actors prefer not to meet people direct. I just hope she’s done lots of homework on how to play someone with her type of dementia. After all a wonderful script is only as good as the actor playing the part.

The storyline will go on for many months, I’m pleased to say. What I did learn was how complicated the TV world is and how the unlikeliest events can change the progress of the script, totally unbeknown to the viewers.

There will always be people who don’t agree with certain episodes or certain bits, but knowing what I know now, I can see why some things happen as they do. Overall, I’m very happy with the way it turned out, the twists and turns, the ups and downs. As for whether, if, or when it will all end………well…………..keep watching…….there’s a long way to go with many good scenes on the way…..and it will be just as much a surprise to me by then as to you………

The second day in London……..

So after Wednesdays meeting with the Young Dementia Network, I stayed overnight, as yesterday I was with Dementia UK (Admiral Nurse people) as part of their LEAP team. I can never remember what acronyms stand for unless they’re obvious. I imagine the L and E stand for ‘Lived Experience’ but can’t remember the A and P…🤔

Young Dementia UK and Dementia UK have always shared the cost for my travel and hotel so I don’t have to go back home as they usually follow one another by pure chance.. It actually costs little more than a return train ticket for each so it makes perfect sense.

Anyway…..I woke up quite early and the television wasn’t working, so I went through the normal routine of scrabble and solitaire…..it was during the scrabble game that a pop up appeared on my ipad……

😳 weird…….it’s as though Big Brother knew it was me on line…..😂🤣

The meeting didn’t start until 10.45 so I stayed snug on Twitter and typing this before I left for Dementia UK offices in Aldgate at 10…….

I ambled to the tube, got out at Aldgate and looked up to the skyline……

I love the way the old and new sit side by side in London as you never know what you’re going to see. A friend of mine, always says, “never forget to look up” and he’s so right.

I arrived at Dementia UK to be met by the lovely Rachel and Toby….many people don’t know the connection between  Dementia UK and Admiral nurses. Dementia UK provides the training for Admiral nurses but the nurses can be commissioned and employed by a variety of services, including hospitals, local councils, memory services………any service can commission an Admiral Nurse in their area.

Playmates, George, Diane and Tracey were there already along with Suzy and Damian and soon everyone else arrived. So after hugs and chatter George and Suzy started off the meeting.

Suzy always does something to settle everyone in with postcards of  beautiful pictures. The Question she asked today was ‘how are you?’

I chose…….

Because whenever someone asks me to ‘choose’, my mind goes all over the place as I find it sooooo difficult to make a decision….so in that moment I chose the tangled mess……

It was lovely to see what picture people chose and why. How people were feeling about their life at that moment.

Found out what the A and P stands for …..Advisory Panel…….of course 🙄

George then took over….talking about how we can run this meeting better. We often get invited to meetings and they’re run as an ordinary meeting…….we easily get lost and if we fall behind we find it difficult to catch up. So today we’re going to have 2 or 3 parts where we break apart with people with dementia in one group and the rest in another.

Toby then gave a summary of what we’re going to do today ….

So to the first break out about the views around the membership of the LEAP group. We agreed that any papers would have a brief summary on the front. There are 5 of us living with dementia in this group and we represent a wide range of different aspects of dementia which is lovely and varied..

Damian then had a brilliant idea for a research project for where 2 DEEP group could join – North and South. Needless to say I got very excited about the prospect……….🤪

We went through the Influencing pack and the new layout. It’s basically in three section…..but I raised the issue of the scariness of ‘a pack’. I asked if the three sections could be colour coded or separated in some way.

We raised the issue of how do people know an Admiral exists or doesn’t exist in their area and how do people who live on their own know they exist as the perception is, they work with families?

We then came back together and each fed back the main points before a cuppa tea.

During the cuppa tea I had various messages on Twitter to say my name and book had been mentioned in relation to the Dementia storyline on the TV programme ‘Casualty’. So now the news is out I’ll write a blog on Monday about my involvement.

After a cuppa Rachel took us through the strategic aims of Dementia UK and how we need to promote more, especially the nurse led Helpline who can help anyone anywhere. The telephone number in the UK is:

0800 888 6678 or you can email helpline@dementiauk

We had Sarah from the Strategy department to ask how we would like to be consulted…

After lunch we filmed 3 supporters, Frank, Sarah and Susan, giving their views on the difference Admiral Nurses made to them. It was lovely listening to their totally different stories and what Admiral Nurses did for them.

As Susan said, “they gave us that valuable commodity of time”

They all told their story and showed superbly and sensitively the emotional strain placed on both the supporters and people living with dementia. But also the fights and loneliness felt, having to find worthwhile support of any sort.

If any story can stress the need for Admiral nurses, then those 3 varied stories showed it perfectly…….very emotional and very draining but sooooooo worthwhile. Of course they were difficult to listen to but nothing difficult was ever easy to hear. I always say, our lives run in parallel, both have equally important needs.

Commissioners need to be played the film we made of them and they couldn’t fail to see the need for Admiral nurses…..

Must have stopped typing at this point. It was a really good meeting.

On my way back to Kings Cross, the sun was shining and I ‘looked up’ once more.


A ‘future view’ in progress……

A Long Trundle down to Exeter……..

Wednesday saw me making the long journey down to Exeter in the South West. This was for normal researcher stuff this time😊

The event wasn’t due until Thursday but they’d kindly agreed to put me up for 2 nights with it being such a long journey…about 8hrs in total😳😳

Anyway, another storm was passing over the country as the nice taxi gent picked me up at 8am. I had a lovely surprise when I got to my local station as a lady came up to me asking if I wanted any help with my case. She also said, ‘you don’t know me but you’re Wendy aren’t you? I’m one of your Twitter pals and have read your book’😳☺️😍💝….what a lovely way to start the day! I always love meeting my Twitter pals as for that moment they are real instead of virtual 😍

I must have booked the super slow train to Doncaster by mistake as we stopped at every station possible, some I don’t think I’d seen before🙄 but it was nice staring out of the window at the new views. The clouds were in a great hurry to get somewhere as we went trundled passed the Humber

I hate Cross Country trains, so had decided to go via London. It only added 30 mins to my journey so no big deal and I felt happier. It was also loads cheaper than Cross Country….🤪 However….nothing is ever simple on the trains and the force of the wind was against us……as we went slower………and slower……..and I did start to worry about catching my next train even though I’d allowed an hour between them 😳🙈🙈🤯

We were nearly 40 minutes late……😱….but luck was on my side as the tube came in immediately and I just managed to get on the first carriage of the Exeter train before it pulled out of the station…….AND breathe……….it was a lovely train ride with very dramatic weather…..

Arrived in Exeter on time after all that. A nice taxi man drove to Fawlty Towers, the Hotel, where the poor woman on reception was also running the café bit, the bar, serving tea and on reception AND she was new🤯. Between serving the chap in front and me, I saw her disappear and reappear serving tea to a customer…😳To her utter credit, she didn’t panic, she didn’t flap, she took one step and one chunk at a time and completed it…..a rare skill so credit where credit’s due.…… didn’t dare ask if there was anyone who could help me with my suitcase up all the stairs, as there was no lift. She would probably have put on another hat and had to do that as well………
Always makes me wonder when things start off like that….and the event is here tomorrow…..hope it’s her day off……bless……..

Many organisers forget we have to eat in the evening and only book bed and breakfast but this one kindly included the evening meal as well. Often I just go out and get a sandwich but I wasn’t sure how close to shops this hotel was so I ordered room service ……well, obviously I went downstairs to order my sandwich and chips as I can’t use the phone…..luckily there was another person with the newbie as amazingly she was still there and I imagine her donning her apron to make my sarnie too! She was soooo nice.

And so to hibernate for the evening……..well……I say hibernate…….sleep is often a stranger in hotels and the continual flashing green light on the ceiling and the constant dripping tap that I couldn’t find didn’t help didn’t help. Maybe dementia was playing tricks with my hearing…..🙄

Breakfast was an interesting experience…..I asked the girl if they had any more butter as the dish only had one left, only to be told…..’oh we’ve run out of butter, I’ll bring some marg’……I then asked her if I was using the toaster correctly as nothing was happening……to be told……’oh yes, it’s rubbish, will take ages’………mmmm, ok, thank you……..🙄
I’m sure they were all just having a bad week🤔

Anyway…..back to the reason I was there…….

I was at the event to encourage the public and professionals to talk about and promote research. My friend from NHS Direct days was also going to be there which was a big bonus.

Alison Potter from the Clinical Research Network started off the event. She looks after the Patient and Public engagement in the area. Dr Richard Laugharne Deputy Director opened the event and spoke about research in the NHS. He spoke of the trust between patients and their clinicians, how we trust them. Mmmm I wish it was two way and clinicians trusted us too. He spoke of the divorce between the academics and clinicians. How we must join those two together.

He spoke of the culture of ‘protectors’who stifle research if the culture is wrong.

“Patient empowerment is vital for the future of the NHS”

Nice start………

Me next….I remembered to talk about Dementia Enquirers 😇 and another bit of what I said was…….

Research can often fill a gap where stage appropriate services are in short supply.”

Must have spoken about 40 mins on clinicians language, advantages of research, and all manner of rambles……

There were questions afterwards…..and Cynthia who I worked with at NHS Direct many moons ago said how this person before them is a very different person……and that’s why I call me this ‘Gregarian alien’

Alison finished off before the break by talking about why we need patient Research Ambassadors……

She played a video of Dame Sally Davies saying how the patients voice makes research real👍.

Time for a cuppa tea…..😊 and I met some lovely people who bought a copy of my book☺️

Next up was Rosalyn currently doing a PhD at Southampton Uni talking about their Ambassador group. She spoke of the help gained in her study by having the public involved,
She spoke of how members can do as much or as little as they feel comfortable doing.

Anna (I think) is who a Patient Research Ambassador spoke about how she got involved in research and co-production.

Finally before lunch we watched a video about research into meningitis. Students about to go to University (a high at risk group )were involved in a local trial, that if successful will be rolled out nationally. The Research Design service finished off the morning session – they help researchers through the whole design process of research projects, including public involvement and best funding strategies.……they’re ‘a bunch of methodologist’ – her words not mine🤣.
Nice to hear all the different types of research.

Lunchtime (cuppa tea)was welcome. I sat quietly for a while having my cuppa and kind people came to buy my books again and chat. Photos were taken before starting again.

It was an interesting start to the afternoon talking about why people get certain diseases and why some people are more susceptible than others…….however……I was becoming very tired by the minute as it was exhausting just listening and was finished with typing. I always think every event needs a mix of listening and discussion…..

A nice day with lovely people……..I needn’t have worried about the hotel not keeping me in a supply of tea……..me thinks they must have all been working today😂

A Trundle to York…….

Yesterday was the first day in ages that I’d had two events back to back and it didn’t come easy. I was soooo glad I’d organised everything for the week on Sunday, as I always do, which meant paperwork, tickets and instructions were waiting for me on the side to put in my pink folder.

I was at Bradford Uni the day before and yesterday I was with Bradford again but at York for an event to celebrate one of the studies I’ve been involved in.

I’d got back the previous evening very tired and brain dead and then had to get up at silly o’clock for the early train to York. Normally this would be easy peasey as it’s my best time of day, but once again, routine has gone out of the window and 2 days running of out and about was hard.

Anyway….hopefully I’ll get use to it all again. It was a very different day from previous and the playful skies over the Humber had been replaced by an unwelcoming grey rain filled sky……but still there were chinks of hopefulness ….

Sandra was meeting me at York station for us to amble down together to the lovely Railway Museum – a train enthusiast paradise.

We were there to promote the findings from the BHiRCH Pilot project – Better Health in Residents in Care Homes. The aim was reducing avoidable hospital admissions from the care home.

As always, it’s been wonderful being on the reference panel for this. I often say that I’m doing it for purely selfish reasons – i.e. wanting to make things better for when I need them😂 but in this case it just reignites my thoughts on not wanting to ever go in a care home. So maybe I’m doing it for others with this project as some people want or have no choice but to go into a care home for various reasons.

Sandra’s train was late🙈🙄 but we’d left lots of time so ambled to the Museum. We were early so a cuppa tea wasn’t ready🙈 but we were early so forgiven. When the tea did arrive they had lovely big mugs so immediate brownie point……..but quickly taken away as when I went back for a second cup and they’d run out of water AND tea bags😱…….. had a strange concoction of Afternoon Darjeeling tea, which someone told me was real tea…….wrong………

Anyway, back to the session. The room was chocca as the event sold out days after being advertised…..
Prof Raymond Koopmans from the Netherlands was the first speaker.

In the nursing home where he works they have separate units, one being for people with Young Onset and day centre for people to stay active. Mmmm interesting. The Dutch government fund the University Care Home Network.

Here Care Homes have a designated GP but in the Netherlands they have specialist geriatricians. It’s a unique specialty in the world. They are employed by the Care Home.

They work 24/7 and have to be with a patient within 30 minutes any day any hour. All residents have electronic resident files which the doctors can access at home if out of hours and prescribe electronically.

Someone asked a question asked about funding and his response was that all care homes are state funded.
The charge to the resident depends on their income but everyone gets some if not all financial help.
In the Netherlands they have the money but have a severe shortage of nurses. They ideally want a ratio for 2 nurses on 8 residents…

I asked if the Netherlands have the 3 tiers as we have of Residential, Care and Nursing Homes?
His response was, since 2015 all residential homes disappeared as emphasis was put on staying at home but this huge transition has led to the Nursing Home system being under huge pressure hence the lack of nursing staff.

A really interesting talk on a system elsewhere in the world and comparing it to ours………..
Are we all moving to the Netherlands……?🙄 the room was busy looking up flights and packing bags…….nurses thinking of a change in country maybe 🤣

Next up was Prof Murna Downs……this project has been going on for 5 years……yes they want to keep people out of hospitals, but the main aim is for better health in residents in care home who are often hospitalised for conditions that could have been treated in the Care Home. They concentrated on 4 condition, for example Dehydration and Urinary Tract infections. It brought us back down to earth talking about this country’s system……

The Stop and Watch Early Warning tool is a simple tool available on line for anyone to use……..

Older people respiratory problem don’t always manifest in coughing, they become quieter….so knowledge is key to identifying changes early. They want the care assistant to feel a key part of residents medical care. But to do this they have to have the knowledge and training and TIME to do this. The family should also know the process as part of the care team as they often know best what’s normal and what’s a change.

Next up was my lovely friend Barbara Woodward-Carlton……who heads the Carers Reference panel, which I’m a member of……. Barbara told the story of her mothers traumatic experience in hospital. For her to say, ‘I don’t like it here’ was very significant.
She spoke of the important role of the Carers Reference Panel for this project. Bradford Uni of Dementia Studies has such a panel on all projects.I’m on lots of them, which makes me very happy.
She spoke of how Care Assistants are undervalued and underpaid.
Wonderful Barbara🥰

We finished before lunch with a panel question time. Liz asked the question of the day
”what is difference in the culture of the Netherlands that means the elderly are valued and funded in later life”……….He answered by saying that the current government has an interest in elderly care. He also said how one or 2 celebrities had a mother with dementia and wrote a book about it which attracted high profile discussion and helped lead to a change in culture.

In the Netherlands people do not have to sell their homes to pay for care……..

Very good questions, very good answers and then time for lunch………but it was by pure coincidence that I had a comment from someone from the Netherlands on my blog yesterday saying how there is little knowledge of Young Onset in their country……another case of you don’t know what you don’t know maybe?


Our unusual lunchtime venue!

The long day the day before followed by an early start yesterday meant brain shutdown came early and the afternoon session was lost on me sadly but I imagine it was very good……

What I did take in was that It was so refreshing to hear researchers stating the negatives as well as the positives. So often we’re given an ideal interpretation when a more balanced view is needed. That’s what we got today. The most interesting observation was that there weren’t as many unavoidable admissions into hospital from Care Homes as previously thought. So is the hype, political hype, to give the impression that more blocking of beds is coming from Care Homes?…….really interesting food for thought and just goes to show you should never believe all you read or hear ……….

People often ask me how I get a blog out so quick…….well I type it in real time, on my journey and then throughout the event. By the time I’m home, all I have to do is add the piccies from the day and hey presto it’s done. If I didn’t do it like this and left it until afterwards I wouldn’t remember the detail……😊

It was lovely to trundle past Wressle Castle bathed in sunshine as all I could do was stare out of the window……very tired but another good day……

Listening to the work of my favourite species…..

Yesterday I trundled to see my favourite species – students at Bradford University. This time I was there as an Alzheimers Society Research Network monitor for the DCT (can’t remember what DCT stands for – hate acronyms 🙄)……….

Anyway some of the PhD students were there to give us an update and presentation of their work so far.

It was a strange start to the day as my legs and brain had obviously had an argument and weren’t talking to one another…..at the station I even had people helping me on the train and the guard showed me to a seat, so I must have looked a tad discombobulated and legs and body out of sync😳🙈……..there’s no routine for the necessity of early rises and train journeys at the mo, so maybe that was it…….I’m also a bit doped up with tablets at the mo, so that could be another reason……who knows………maybe they’ll make up and talk to one another soon 🙄

Anyway the trains behaved in the beginning and I’m typing this on the second train to Leeds.

The sky looked almost playful as we trundled along the Humber

I arrived in Bradford amazingly on time, and wobbled my way up the hill to the Uni where I found Sandra, Barbara and Jackie in the cafe and Vivien joined us in the room …….The students were all ready and waiting with their supervisors all ready too  and Paul had the first slide up on the screen

After a cuppa tea, catch ups and hugs, we were ready to start……

Barbara started the meeting and we introduced ourselves. Students, Helen, Angela Suzanne and Paul were the ones under the spotlight today. We celebrated Courtney’s and Denise passing of their PhD – amazing………both were sadly not there as they’re now working!

We suggested they make a mini podcast on film giving us an update of what they’re doing now😊

Murna then spoke about a possible celebration and dissemination event in July to celebrate their graduation.

Paul was the first to present an update – his study is on how people with dementia manage their medicines at home with the help of community pharmacists………

In the literature there is little in relation to medicines management particularly of those living alone…..
So this formed the basis for the questions for his project…..he will be gathering information from people with dementia on attitudes, challenges, routines and strategies, Types of support and what would help……..
And then ask the same questions of pharmacists……

I asked the stupid question “What is a Community Pharmacist’……..I hadn’t realised there were basically 3 types, Hospital Pharmacists, Pharmacists attached to Gp practices, and Community pharmacists (the normal high street pharmacists)

Sometimes it’s the simple things that help……for example medication in liquid form than tablets. I mentioned the importance of colour – if I needed 1 familiar pink one, that stood out, then giving me 2 white ones won’t help…..

Suzanne was up next……her study is on investigation the quality of medication management when moving from care home to hospital and back again.
It will hopefully inform improvement into the practice and influence policy.

She’s looking at policies in the hospital and care home – their roles and responsibilities at transition points between the 2 establishments.

There seems to be so much confusion about best practice around medicines and transition between care home and hospital and in reverse…
The question was raised around responsibility when someone with dementia is admitted to hospital – should someone from the care home go with them? But is that practical if the person maybe in A&E for 10 hours or something. Who is accountable for information transfer? It’s the tiny detail that makes the difference between someone taking medication and someone not.

It’s not just a list of drugs that’s needed, it’s the finer detail about the person themselves that’s useful to know.

Paul gave the quote of the day……“Without responsibility there’s no accountability”

Lunch and cuppa tea time and the students gave me a belated birthday card……🥰🥰🥰

Third up after lunch was Angela who is looking at the nurses role in transition between hospital and care home paying particular interest in the discharge process.

Her main questions are around roles and responsibility and the barriers and facilitators for implementing these roles.

She is gathering both perspectives from nurses and care home staff about what is their role when someone with dementia is being discharged back to the care home.

She found a lot of variation in practice around information exchange. Lots of tensions within the system.

The one side don’t understand the others practices … there’s no joined up working sadly. IT systems don’t talk to one another which are big barriers to helping good practice.

I said how hospital managers and Care home managers and Pharmacists, need to be invited to hear the outcomes of all these projects. They need to be made to look silly as they won’t believe the staff on the ground have the problems they have. No good having the staff as they can’t make the change but managers should be made accountable for such rubbish and disjointed systems. They should have a job swap for a day…..hospital nurses have very little knowledge of what goes on in a care home. They don’t see how they are all one big team. There’s a cultural issue of how care homes are viewed.

Finally Helen gave us an update about her project. Talking to women who lived on their own when diagnosed but not necessarily now. She is doing it through narrative research, so gaining valuable information through conversations. However, she found it so difficult to gain interviews because, she thought, of racism and gatekeepers. It’s about people attitudes and assumptions. Dementia has silenced a lot of people as gatekeeping comes into play. The mental capacity act is being used to stop people doing things instead of enabling. She has only been able to get women through word of mouth. No other method has worked for her.

From all I heard there was soooo many examples of why I never want to go in a care home…..or into hospital……….

At the end me, Sandra and Viv met with Prof Jan and Prof Murna to discuss the meeting from the perspective of the Alzheimers society research network monitors……..just so we could complete our feedback form.

Needless to say we were well impressed as we always are here at Bradford. Seeing the students eyes light up when they speak with such enthusiasm is a joy……….wonderful…..

My Monthly Trundle to see New Staff at Humber……..

I havn’t quite got back into a routine as my calendar is still quiet as the world wakes from Christmas. So it’s always a welcome when my monthly trip to Humber comes round to talk to new staff on their first day.

Some weeks I can fill my calendar many times over……take Dementia Awareness week in May….well I could have already filled that week 10 times over as it’s been full since last year.
Note to organisers – Dementia Awareness week should be 52 weeks of the year – why not have your own Dementia Awareness Week in your organisation so that it lasts all year and not just for a week……..just a thought🙄

Ooooo gone right off piste havn’t I…..😳……..anyway back to yesterday……..

After the lovely cold frosty snowy week just gone, the weather has changed it’s mind again and we’re back to milder weather. Yesterday was rainy and grey…..but the smiley face of Sarah turned up at my house at the arranged time.

We chatted happily and had a catch up on the way. There’s always one junction where I close my eyes as the village roads meet the main road into Hull……..and it can often take forever at rush hour to get out….but to our surprise I didn’t even have to close my eyes as a gap was waiting for us and we were both taken by surprise…..luck was really on our side……🙌

We arrived at Trust Headquarters and Sarah made me a cuppa while she then got all her bits together.

We trundled over to the lecture theatre, not knowing how many nervous first day faces will be waiting for us.

The Chief Exec, Michelle Moran, speaks first and then it’s our turn to follow her in……….

We went in and this month they were a very smiley friendly bunch. Some months they’re all so nervous  there’s just silence from start to finish – always very strange, but today I could tell they were a nice bunch.

Sarah went through her slides saying how good we were in this region but needed still to do so much more. There’s so many projects happening at the moment in Humber for lots of conditions as well as dementia which is always nice to hear.

Then it was my turn to finish off. I ask them at the beginning to:

Imagine yourselves being given a diagnosis of Young onset dementia. Your life falls apart, you feel worthless and of no use to anyone any more……”

And then go on to talk about the impact research had on my life post diagnosis.

They were a lovely bunch and were very generous in their applause. One person said how she’d heard me on the radio last year 😳 I then took the opportunity to ask for a piccie for my blog since they were so friendly and they were all up for it.

All finished, Sarah then surprised me by taking me a different way back via the café…….they’d only been baking cakes at the weekend to sell to raise money for my Skydive…..


And had put a collection jar and details of my fundraising page 🥰

How kind and lovely of them all and then 3 more of the team arrived so another opportunity to ask a random stranger if they’d mind taking a piccie 🥰

What a lovely start to a Monday. Smiley new starters in Humber Trust and a cake sale to raise money for my Skydive……I’m soooooo lucky…….