Category Archives: Involvement

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 It was a very different day from previous and the playful skies over the Humber had been replaced by an unwelcoming grey rain filled sky……but still there were chinks of hopefulness ….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😊

My last trundle of the year to London……

So yesterday I trundled down to London for my last 2 days there before the New Year. I had 3 reasons for going; the first day I would be with Admiral Nurses LEAP group (Lived Experience Advisory Panel) and the following day with Young Dementia UK. My third was a tad random as I was having tea with Tom Pauk  and Ian who wanted to discuss the possibility of having my portrait painted…….as you do…..😳🙈

Anyway the day didn’t start off quite as planned……..British Rail, in it’s wisdom had decided to release a whole new timetable……no problem, I thought, as I already had my tickets……don’t know what made me check the website the day before…..but…….my first train to Hull had disappeared😳 even though I’d booked that train🙄……

We usually have two trains into Hull at silly o’clock, 15 minutes apart, I’d booked on the second one that had magically disappeared and apparently no longer existed🤐. I went into my taxi people to book an earlier time only to be met with a gulp, a roll of the eyes and ‘Oh no not you as well’………of course everyone who had booked the later train now had to catch the earlier one, so no longer were taxi rides staggered…….poor taxi company had to call in extra taxi drivers to start early just because of the timetable changing………She said she would sort me out but not to panic if it was a tad late (they know me well) and sure enough it turned up on time and we grumpily trundled to the station (I must have had a driver who had to get up earlier than expected🙄

It was dark and cold on the station platform. Everyone in their own little world, many of us there earlier than expected……so what happened?…….the train was 20 minutes late….🙈later than even the original second train😏 which left us 2 minutes transfer time to the London train in Hull😫….

Anyway……..I managed to get the London train by getting on in the first carriage and walking through as it departed…… not a good start to the day🥺

It took the world a while to wake up and we were well on our way to London before I could take a piccie….there was a lovely sunrise in Doncaster but too dark to take a photo from inside the train and the a blanket of fog covered the land…

And the further south we got and the sun was getting higher in the sky it was desperately trying to burn off the fog. It was a lovely trundle with beautiful skies waiting for the sun to win the day…..

Damian had kindly offered to meet me at Kings Cross as Dementia UK (home of Admiral Nurses) have now moved to new offices, so safety in numbers trying to find it!

We trundled off to Aldgate to be met by Toby standing outside. Dementia UK now have lovely offices. Soooo many people arrived that I wasn’t expecting. Some from Twitter, some playmates, including George, Diane and Tracey.


A lovely smiley piccie by George before we all started.

We had an ice breaker from Suzy first…she put cards in the middle of the 2 tables with questions that we each had to choose and answer to the group…..

My question was ‘What helps if you’re feeling lonely?’……my answer……go on Twitter and either look or chat…..never lonely with Twitter.

The group was a mix of people with dementia and those who care or cared for someone with dementia so each went through and said who they were as me and Hannah were new members.

We went through our agreed ways of working……..

Toby took us through the impact LEAP has had over the last year, from advising on content and being a critical friend to the Trustees.

We went through the New Influencing Pack which would enable us to lobby commissioners or simply to promote their existence. Much debate then followed on the language used to describe the work of Admiral Nurses.

We were then joined by Hilda Hayo, the Chief Exec, Steve Jamieson who is a Dementia UK Trustee and Faraday who is about to start a new role in Comms.

Steve spoke about Dementia UK being ready for the ‘iceberg round the corner’…….we have to make sure we employ the right people with the right skills. How do they influence the future of Dementia Care? How can people who make decisions, make those decisions without those directly affected? The louder the voice, the greater the influence, so it’s important to work with groups like TIDE and DEEP and also the major charities.

We saw a film about how they raise money and gave feedback on that. George had the great idea of a voiceover being available instead of reading.
Hilda then spoke about their ambitions as a charity for the next few years. Admiral nurses aren’t all employed by Dementia UK. For example, through Admiral Nurse clinics – 45 minute advice clinics, funded by a myriad of organisations. Some are employed by councils, commissioners etc. Various organisations purchase different services from them – for example, clinics and helpline services.….there’s been some wonderful new services created for those with Learning Difficulties diagnosed and also post diagnostic support.

Within the triangle of support, the bottom part is their leaflets and helpline, the second part could be clinics and the top of the triangle is the specialist clinical support from the nurses.

The ideal would be to have an Admiral Nurse clinic in each Gp practice because they’ve found GPS speaking popping in to ask questions……

Lunch time…..and time for a group photo for their web site and mine!

After lunch George took us through our Workplan. We split into 2 tables to discuss…..understanding how we will influence the new strategy …….it started to become difficult to concentrate and my brain was started to buzz, conversations and voices starting to merge……..but a wonderful meeting, with a wonderful eclectic mix of people, each with their own unique experience of dementia at the table, showing the value of the Lived Experience with Dementia UK.

People affected by dementia should have access to an Admiral Nurse when there’s a need just as much as people with cancer have access to Macmillan Nurses……….a long way to go but some wonderful work being done…..

The Start of an Exciting New Project……Part 2

So following on from yesterday………

We’re not undermining the wonderful work researchers do, we’re saying that we can bring a different and unique approach to research. But we also appreciate the guidance and advice from those professionals who are already very successful in that area……so this is where our three visitors come into play.

Prof Dawn Brooker and Prof Tom Shakespeare arrived…..David was delayed and Simon sadly stood us up at the last minute🤐…….after initial inductions it was lovely to share all our initial ideas with Tom and Dawn…

I talked them through our priority list and it was exciting to see their enthusiasm. Their role is providing their expertise on the barriers, such as ethics and the technicalities of research. They gave their views on ethics……this brought much discussion, much advice, much to think about. Tom stressed the point that published research shouldn’t be the be all and end all as non published research can be equally as valuable. Bridging the gap between research and storytelling…..both equally important

Lunch time….phew!

It was a lovely lunch and further discussion and ideas flowed. We were all overwhelmed by the volume of stuff and even Philly and Rachael were drowning under the amount of exciting stuff that we all wanted to get going……..it was interesting to see how Dawn, Tom and David hadn’t heard of hyperacusis. So we’ve already taught them something.

The first of my senses to be affected, 4 years ago, was my hearing. My ears became very sensitive to noise and certain tones of noise. We’ve since learnt, through amazing work by Agnes Houston that it has a name – hyperacusis. Many clinicians are unaware of the existence in people with dementia and now many of us are being referred to audiologists for a simple test – an ‘uncomfortable loudness test’, which can denote we need personal noise barrier plugs made specially for our ears. It is common in those with autism but not recognised yet for people with dementia…….

After our incredible busy morning we had time for a lovely piccie of the whole group.

We then had just over an hour to completely empty our heads and fill in the 3 prof advisors on the morning discussion. We wanted to hear their thoughts on how they think they can help

I asked for their initial thoughts on what they thought of our plans. Dawn said it’s so important to ask the right question and being clear on our line of enquiry. Defining the research question clearly. Dawn spoke of the expertise available at Worcester.

David said our second most important question was about who we want to influence as that can often influence the methodology. His knee jerk piece of advice was don’t avoid things just because they seem scary. Confront ‘research’, don’t avoid the fact that its research. Be curious. His interest is getting people to use their own voices. He said:

“create a harmonious cacophony of voices”

Tom said to ask how can we get professionals to continue doing this sort of work long after we’ve finished. He is a qualitative researcher with people with learning disabilities and physical disabilities. He can bring a different but relevant perspective. We must prioritise projects which are original and will have the most impact with the resources we have. Use those with expertise – we don’t have to do everything.
Also to ask what’s the value added value bit that we, as this group, bring to research.

“Make everything as simple as possible but not simpler” and “try to find a charismatic idea” said Tom

“ the topic is like a ball of clay, you’re not sure what it will look like but don’t be afraid that you won’t get a pot at the end of it” said Dawn.

All our heads were spinning and it was interesting to hear the fear some of the group had about their capability in this project. The fact that they spoke out about this fear was so good. They almost set the benchmark. If we can get it right for them then we have a chance of succeeding with others in allaying their fears and concerns.

“We believed we could and we did”…..a nice few words from Dory to end the day…….just can’t wait to get going now….

The Start of an Exciting New Project……Part 1

Innovations in Dementia have a major new project starting called Dementia Enquirers and we had our first meet-up yesterday! It’s testing out a whole new approach, where people with dementia will lead & control our own research, on issues important to us. The Big Lottery has funded the project with a grant of over £500,000…

Philly Hare and Rachael Litherland are our partners in crime and keeping us under control……well maybe……..a hard task for anyone to undertake 😂

It was a very wet murky start to my trundle but at least the train was on time. Bizarrely it was also raining inside the train, causing much confusion and shuffling around playing musical chairs……🙄☔️luckily, I was either getting wet and didn’t realise it or I’d chosen a good seat😊

Rachael was meeting me and some other playmates at Kings Cross before we wandered up to Euston to meet some more…….as it turned out, it was just Carol with Rachael first before we trundled up to Euston to meet Agnes and Dory.

Agnes was busy doing selfies when we found her. She’s found an amazing Tree of Thoughts. Euston station was wanting suggestions from people about how they could better help people with invisible disabilities by posting suggestions on a Tree of Thoughts. So a lovely member of staff was roped in to take a piccie of us all


Dory, Carol, me and Agnes….

 

We then climbed in a taxi and made our way through very busy London streets to The Royal Foundation of St Katharine – a lovely peaceful haven in the midst of the city hustle and bustle.

Philly, had arrived early to put up some very useful signage. After settling in my room and a much needed cuppa, I joined the rest of the group downstairs bu following all Phillys ‘Wendy’ signs, for a cuppa before supper. Howard, Mhari and Hugh joined us too and lots of conversation and laughter continued.

After a lovely supper I abandoned the group as my head was banging, as usual, and I retired to the peace and silence of my room. My silent community of Twitter, keeping me company.

The next morning, over breakfast, we put the world to rights and laughed sooo much before heading to the meeting room.

We began the session with Agnes leading a few minutes of relaxation which perfectly set us up for the day.

Rachael went through the detail – The big lottery has funded us for 3.5 years. It’s a new approach to research – led and controlled by people with dementia. It will give the opportunity for 16-20 grants so that DEEP groups can carry out their own research/enquiry

At lunchtime we’ll be joined by Dawn Brooker, Simon Denegri, David Crepaz-Keay and Tom Shakespeare – all professionals in their field.

It’s a very unique and exciting opportunity which is actually creating history in the research world for people living with dementia

We need to show the research world that we too can be professional in the role we’re undertaking. Researchers will come through our door instead of us going entering through theirs.

I asked if ethics would be involved and of course if we want to do valuable reasearch that will be taken seriously then yes they would. But what an opportunity for us to go before ethics committees and show them how we all still have talents and need to have our voice heard.

We need to turn research on its head. The Big Lottery were impressed because they like to fund projects which challenge the status quo. Research priorities will be driven by people with dementia.

We spoke of the words we use so as not to frighten some people. The thought of doing ‘action research’ will mean nothing to many. So having conversations with groups and allowing them to decide the words and type of ‘enquiry’ they want to make might be key.

We then had to randomly think of projects that we think would be useful. Soooooo many went on the flip chart……..we were bursting with ideas……wonderful wonderful ideas. 2 sides of flip chart paper……so we won’t be short on projects……..

Over a cuppa tea we then had to choose and tick our favourite 3………but I couldn’t help ticking 5 as there were soo many good ones….my head was buzzing with ideas and excitement…..

Role of the Research Interest Group was up next……again lots of excitement but also fear of our role. We need to work together to find ways of measuring what has changed because of the project.

It’s our opportunity  to amaze people in what we can do…..

The final job before our visitors arrived was deciding the logo…….we had 10 to choose from and narrowed it down to 2 favourites………😊

So this won’t be an overlong blog I’ll finish off tomorrow and you can read about what the professional visitors thought about our ambitious aims and how they might help us along the way……….

“Enhancing Lives” Conference……

I was contacted ages ago and asked if I would be happy to speak at a conference in Wiltshire. At the time they apologised as I would probably never have heard of the place…….it was Trowbridge; a place I lived for a couple of years eons ago – ha! I even still visit as I have friends living there. So I was more than happy to accept the offer as it meant I could stay with my friends.

My journey took about 8 hours 😳🙈 so I went a couple of days before just to have a rest day. I’d come armed with a suitcase of 25 books but luckily really kind people helped me on and off the trains as I struggled to lift it🙄
My day off was taken up by my annual visit to a local garden centre near Lacock that holds a wonderful Christmas display. I wasn’t disappointed and came back laden with a snowman and huge Christmas village 🙄 I got back and suddenly asked the question, how was I going to get them home😱 so it was vital that I had to sell some books to make room🙄

Pam and Kirsty kindly picked me up on a very cold frosty morning and we trundled to the venue at the Civic centre. I was met by David Sheard and Babs from Alzheimers Support. They’d got me a packet of Yorkshire tea just for the occasion 😇

Alzheimers Support’ has the contract in Wiltshire for Dementia services.

I was so thrilled to be tapped on the shoulder by my dear dear friends, Christopher and Veronica Devas. Christopher has trouble speaking now so often sits happily silent but read my badge and said ‘wendy’ which made my day………

David Sheard, the founder of Dementia Care  Matters, was up first. His speech was around the family. He asked us to take a moment to say what we thought of the word ‘family’. I said it does not have to mean related. My 2 daughters are the most important people in my life but I also have a ‘family of people with dementia’ It’s people you feel close to.

Today there is a diversity of families……In his presentation he spoke about ‘feelings’and their importance for people with dementia.
“Person centred care’ is difficult to find as the ‘love’ part of Kitwoods flower has become forgotten.

I’ve often said that good dementia care isn’t about the practicalities of care, it’s about, feeling safe, feeling happy, feeling human again.

It’s important to remember that a residential establishment is someone’s home……
Here’s the link to the film

He spoke how the Care Home system needs to change – it needs disruption 👍

Family and Love need to come back into care.

He finished playing the song “We are Family’ and everyone just getting up dancing and singing..

Next up was me……. I followed on from Davids talk speaking about the importance of the diagnosis not being just for the person but also all those around the. Everyone needs support. One bit I said was

“I have a problem with the phrase ‘living well’ it was a good idea some years back as there was nothing else but I’ve since realised from meeting other people that it sets such a high standard that not everyone can reach, so it ends up having a negative instead of positive effect as it makes some feel inadequate. So instead I prefer living as well as you can. It’s so important to revisit language every so often. No, it doesn’t trip off the tongue as easily or fit into slide presentations quite as neatly but it helps so many not to feel inadequate when they’re struggling…… “

It was time for a cuppa and lots of people came and chatted. Pam kindly stood with my books and they were gone in seconds with lots of disappointed people as I only managed to take 25 but could have sold a lot more.

During the tea break I also made 2 new friends


What goes down has to get back up again and 2 people had to help me back up😂

After tea break we heard from a lovely carer, Caroline, who said that since becoming involved in a support group their life had changed for the better. Their group is at a farm and allows them to enjoy the outdoors.
“Being in such good company has enhanced our lives after being isolated and scared.” “It’s opened up a whole new chapter in our lives”

Then a wonderful film showed made by the group.

The Laverstock Memory Group were up next. This is the group attended by my lovely playmates Veronica and Christopher. They meet in someone’s home and people with dementia meet in one room and supporters in another. They questioned whether a dementia awareness session made businesses dementia friendly and decided not.They were given a pot of money by DEEP to go round local places that they chose to assess how good they were. They then hand out a certificate to good establishments.

Wonderful to hear a local group and all that they’re doing.

Up next was Tony Whitney who supports his wife Donna who is living with late stage dementia of the PCA variety, which is more about visual special issues rather than memory. He spoke of the ‘sparkle’ disappearing in the beginning due to lack of support. Other conditions added to the complexity. The difficult decision of choosing a care home was made more difficult by the inconsistency of care. Many were Institutionalised but he thankfully found one where Donna was made part of a family. Her sparkle returned through good support and good care and she has ‘reconnected’ with the outside world.

Psychological hurdles and barriers can hinder and prevent us from doing things that are normal. New issues demand new solutions…….”………a wonderful talk by a wonderful man about his wonderful wife.

Finally before lunch Babs and Kirsty from Alzheimers support launched Wiltshires Dementia Roadmap. They called these virtual team members. It was designed with the help of people with dementia…..and looks very simple to follow on the slides.
The one page that stood out was the one that said:

“You are not alone”

You can take a look here:

http://www.dementiaroadmap.org

http://www.thesupportvillage.org

Time for lunch as I was now starting to flag…….lots more wonderful things in the afternoon but I just wanted to sit and enjoy as brain disappearing fast so no more typed….EXCEPT the first speaker was a GP who showed the slides of Alistair Burns and spoke of Living well…..the one phrase I spoke against this morning. I didn’t agree with lots of what he said, but then I’m not surprised……..and he, in a room with many people living with dementia, said Donezepil doesn’t work 🙄 …….but was luckily contradicted by the next speaker, Professor of Research, who said how it delayed declined which they’ve proved……..

After yesterday blog, the last workshop, Dr Simon Manchip restored my faith in Consultants in Old Age Psychiatry. A wonderful talk with humour and challenging current views and practices. I sat through it twice to finish on a high.

Really finished now…

Wonderful event and so glad I was invited.lots of good things happening in Wiltshire…..