Category Archives: Involvement

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…….

My only trundle during a quiet week……..

I suppose I should have been grateful not to be travelling about with snow lying in some parts of the country and hazardous travelling conditions……..mmmmm maybe….but it’s a very quiet week this week. I’ve tried to keep myself busy ‘doing’ but it has been difficult….

But yesterday I did have a trundle. It was a meeting of a research project I’d been involved in, Journeying through Dementia. I’m part of the Steering group. Usually our meetings are held in Sheffield but this one was at the home of my lovely smiley research playmates at Humber.

Their administrator extraordinaire, Alison, had even offered to pick me up and even take me to a dental appointment afterwards. Every team knows the value of this vital link in the team. The person who is capable of organising everything and everybody – well Alison is the key person in the Willerby team.

Anyway, it was a beautiful, if not cold day outside my window…

Alison picked me up at the agreed time and we trundled to Willerby……having a chatty catch up on the way and putting the world to rights.

I went upstairs for Alison to make me a cuppa while we waited for everyone to arrive from Sheffield…….and I caught up with the rest of the smiley faces.

We eventually went downstairs and everyone from the Steering group was already there.

Journeying through Dementia is a large-scale research study that aims to find out whether attending a 12-week community programme has a positive impact on the quality of life for people who are living with the early stages of dementia.

Catherine from York Uni chaired the meeting. We went round the table and introduced ourselves as some people were on the phone. It seemed to be a trend for everyone to say their name followed by ‘part of this wonderful project’😊 just to give the research team a lift.

Jessica, the trial manager, spoke of a good idea I’d had at the last meeting apparently on retention….I took her word for it🤣 as I felt I was hearing it for the first time…..🙄

Many of the papers were way beyond me but Zoe had put a friendly post it on each one telling me what each paper was about – wonderful idea.Definitely worth a brownie point⭐️

I raised the question of the reality on relying on our answers in follow ups. And that raised a whole issue of current practices. I said that even if it shows how the current practices need to be revisited, that’s a good outcome. I said revisits 8 months after an event and asking us to recollect is a tad adventurous. We don’t like to feel embarrassed at not remembering so may make things up so we don’t look stupid……or we simply give an answer that comes to mind ‘today’. Especially when asked how has your mood been in the last 2 weeks……we could have had 13 bad days, but today is a good day so we’d say ‘fine’ as that’s how we’re feeling today and, of course, the reverse could happen if today was a bad day.

It made me think of our ‘Dementia Enquirers’ project and how we should think of different means of questioning.

All the groups have finished and they’re mainly doing follow ups, which seems amazing that it’s nearing the end of its life and now the evaluation starts…it will be interesting to see what they found.

Fascinating listening to the complexities of trials. Their heads must be in a spin coming up to the final leg of a project with data spilling out from their heads……..glad I’ve been able to contribute in my own little way.

I forgot to take any photos of the team🙈 but I managed to get this one just outside – not very good but better than nothing🙄

Alison then kindly took me to my dentist appointment venue……..a lovely day out and about thank goodness and just what I needed…..

After Sterling, it was the turn of Durham……

I had an amazing time at Sterling, but all good things must come to an end otherwise they wouldn’t be special. And so it was on Thursday morning I awoke to a very different Stirling outside my window. It seemed to be feeling sad like me at leaving with no sunshine, just an eerie white glow of frosty silence

The taxi arrived to pick me up at 10 for the station. We chatted away and the driver admitted how he failed to look at the snow capped mountains anymore as they were normal and he’d seen them all his life. Strange how we rarely appreciate the beauty around us when it’s been there all our lives.

The train to Edinburgh was on time as was the train to my next overnight stop – Durham.
Once more we passed the amazing scenery of the east coast and the sun shone a welcoming light once more

I was in Durham for a Research Project I’m part of – The Co-Designing Dementia in Durham Advisory Board – but this wasn’t until Friday. They’re looking at how they can improve services in the Durham area.
Rowena, an Alzheimer’s Society Dementia Support worker in Durham, had seen I would be staying there and asked if she could meet me to discuss some work she’s doing with Social Work Students – it was the word ‘students’ that did it………..

The staff couldn’t have been more helpful at the hotel and gave me a map to walk the short way to the Cathedral and Castle – what they didn’t say is how steep a hill it was😂🤣😂……anyway managed to get a piccie…..first of the Cathedral and then the Castle next door……

Got back to the hotel and once I’d had a cuppa it was time to meet Rowena. In this area they have 4 support workers and 5 dementia advisors and now have 18 people in their office in Chester le street – in 3 years they’ve gone from 3 to 18 – she was very passionate and her eyes sparkled when she spoke about her work….She’d made contact with me because at a dementia friendly meeting Anne White (I’m sure that’s a Twitter friend 🤔) suggested I might like to talk to social work students doing a masters at Durham Uni ….and they’ve also got contacts in Sunderland Uni, and Northumbria Uni ……….her 3 young children are all dementia friends. She mentioned another playmate from social media, Gill Taylor who will also be helping her….👍

She worked with a couple where the husband living with dementia had trouble speaking, and the wife was getting very frustrated and annoyed with him. Rowena made him some cards with pictures on that he could show his wife – so when he wants a cuppa tea he shows her a piccie of a cuppa tea – result….and now the atmosphere in their house is far calmer and happier – simple yet effective solutions coming to the rescue again.

Anyway, just time for a selfie before she left with me promising to contact her when I’m back home in front of my calendar…some wonderful work appears to be happening in Durham….

Looking forward to the final meeting today before I can trundle home. I did get in a pickle with an usual shower door…it didn’t open out or in or slide….panicked cos I couldn’t get out and then banged the side of my head when it opened unexpectedly, so just warning my girls that I may have a black eye when you see me….. 🙄. I know perfectly well not to panic but I did🙈. ….

It’s been an amazing week but soooo looking forward to being home tonight………🏡

How lucky am I…..?

So many opportunities have come my way since being diagnosed with dementia. It was a very lonely place to begin with, people abandoning you, not knowing where to turn or what to do. But the glass half full person in me wasn’t ready to give up on myself and I went about looking at how I could share my diagnosis for the good of others. It didn’t come easy in the beginning. No one knew me, people didn’t see what I could bring to the table. But I kept banging on doors and now thankfully, on many occasions, people bang on my door.

It’s lovely to get requests to speak in different environments to different professionals. So it’s that very scenario that saw me trundling up to Stirling University on Tuesday…….a very long journey, yes, but wonderful views and they’d kindly offered to accommodate me for 2 nights so I wouldn’t have the long journey back after speaking.

It’s times like this when I wish I could drive again as it would be lovely to explore all the wonderful places I’m invited to but sad that I can only venture a little way in a straight line so I can find my way back! But I still saw some beautiful scenery.

And so it was yesterday that I had the pleasure of speaking to students on their Masters in Dementia Studies course.. The course is aimed at practitioners who work in the field and wish to develop their skills and knowledge of dementia care and support. It’s a distance learning course but at the beginning of each semester they hold a campus introductory day and invite any students who are able to attend. Richard Ward, the Course Director had invited me ages ago after telling me my book was on the core reading list for the course and set text for the second year module☺️

The students come from a diverse range of backgrounds including hospitals, care homes, community-based services and day care to name a few.

After the wonderful trundle and beautiful views of Tuesday, I had a very restless night and woke up with a banging head and painful face. My Fitbit confirmed my feeling of a bad night. The thin red lines showing my wake, sleep, wake sleep ……

I checked my tablet box but I had taken my jaw tablets so goodness knows why. I’d also forgotten, what I call, my head tablets – these just help me calm a banging head but they must be in my little suitcase🙈🔫

Really didn’t feel on top form, but as is often on these days, I’ll walk into a roomful of smiley faces and all will be well in the world. Fingers crossed.

Twitter had been lovely with lots of messages from students who will be there.

I wasn’t being picked up until lunchtime so I took the opportunity to walk round the Loch and get more piccies. I knew my favourite species, Students, would redirect me if I got lost and the ones that walked by were all smiley so I knew I’d be in safe hands.

The views were stunning……

Anyway, back to the reason I was there! Grant came to pick me up at the agreed time and we walked to the Iris Murdoch centre a short walk away.

We arrived to find everyone having stopped for lunch, so a cuppa tea appeared and I was happy. Sooo many lovely Twitter friends came and said hello, but I wasn’t typing 🙈 so can’t remember their names.

Richard, the course director introduced himself and we sat with cuppa teas appearing out of nowhere😊 Because I wasn’t typing, I havn’t a clue what we chatted about but I just remember lots of lovely people and smiley faces.

After lunch was finished it was my turn. I spoke for about 50 minutes (Ithink!🙄) about this that and everything. It included this bit on allowing us to live not exist:

Which brings me onto positive risk taking…..so often for the kindest of reason people wrap us in cotton wool. We become labelled as a ‘vulnerable adult’. I recently saw my medical history and on the 17th May 2018 I became a vulnerable adult. Goodness knows what happened on that day but it’s there in black and white. Maybe it was the day I did a Firewalk for my local hospice or went up in a glider which was a birthday present from my daughters….goodness knows what I’ll be labelled on the 9th March this year as that’s when I hope to do a Skydive for Young Dementia UK”

There was time for a few questions at the end. It seemed to go down well from the lovely comments afterwards. They recorded the talk, which is always nice. In return they all allowed me to have a piccie with them outside with the hills in the background.…

Before I finally left they asked if they could film me answering some question for a 2 minute clip upstairs. So after waving goodbye to all the smiley faces we trundled upstairs and recorded a short clip – again, havn’t a clue what about but I remember we laughed a lot in the process 😂. And it gave another opportunity for a piccie in a mock up of a living room…..

Someone lovely walked me back to the hotel where I’m typing this before the memory disappears. What a wonderful afternoon with amazing people. Exhausted but the smiley faces sorted out my pain…..Thank you Stirling😊