Four kind Strangers, one Short Journey………

I wrote this last Wednesday evening. I’d just made the relatively short tube journey from Euston to Westminster, having arrived in London from my time in Woodbrooke with playmates, in Birmingham.

I strangely prefer to catch the tube instead of taking a taxi in London, where I can. For short journeys it’s often simply quicker and bizarrely I feel safer, I can ‘see’ where I am from the stations on the map, whereas in a taxi, the streets are often strange and the destination unknown.

On this particular day I was travelling on the Victoria line from Euston to Victoria, then the Circle line to Westminster. I’ve now found a lovely app which helps me with the tube travel, as the pocket maps are too tiny for me to read.

Anyway, my school girl error on this occasion was the timing…I hadn’t realised the clock had struck 5pm meaning chaos time…….

I soon realised when I headed down the first escalator to the ticket barriers and the speed of the crowd seemed to double. It was as though someone had pressed fast forward and I needed ‘pause’ in order to join the queue. I spotted a quiet spot against the wall and stood there to catch my breathe as the commuters sped by. I had to work out where I was heading before I could attempt to move again. That was where I had my first encounter with a kind stranger…….

A woman suddenly left the speeding focussed line and headed towards me….

“Are you ok? Do you need any help? You’re Wendy aren’t you? I recognise you from the picture inside your book.” 😳

‘Thank you, just catching my breathe’….was all I could think to say…….and I eventually was carried along with the crowd down the escalator ……

My second kind encounter was getting off the first tube. Being rush hour, the tube was rammed. It wasn’t the journey to have a large suitcase in tow……as I squeezed my way onto the train, I was met by the second act of kindness…..a lady smiled and gave me her seat.

As my Tain was pulling into my station, I began to try and get up to be ready for my fight through the mass, when someone asked if I needed help with my case. Fearing the speed and crush might separate us, I smiled and said I’d just drag it off but thanks for the offer…….so imagine my surprise when I found the same person waiting for me at the door and simply took the case from my hand and lifted it down………..🥰

The tannoy had been stating how Victoria was a step free access station, so no worries on having the problems of lugging my case up steps…….until the next tannoy announced ‘reduced escalor access due to major improvements 😱……and I turned the corner and there were two fights of stairs and a heavy suitcase to drag somehow…….

I looked around and I appeared to be momentarily alone, when suddenly this 4th angel of kindness appeared, smiled, grabbed my suitcase and offered to help carry it up the stairs 🤩

As I ended my tube journey I felt thankful for the kindness of strangers. A short journey, that could have been a nightmare, was instead, made easy through the kindness of 4 strangers……

Never underestimate the power of a random act of kindness….you could be making someones day, just as these 4 strangers did for me……..

Changing minds in Care Homes……

So last Friday saw the last event of a very busy week, this time in Gerrards Cross. I must admit that when I was asked I had to look up where it was……🙈

Liz Wardell, Head of Dementia Care for the Signature Senior Lifestyle group of Care Homes asked if I would talk to some of their staff. She had already bought 26 copies of my book as a gift to some of their staff 🥰. As well as my experience they wanted me to comment on what care homes should or shouldn’t do.

I’ve been saying for ages that this year I want to focus on talking at different events and this is my second venture into the Care Home World.
Liz had decided on Gerrards Cross as it was near to London for me, especially as I had an event there the day before, and it wasn’t far from their head office in Beaconsfield. But staff were coming from around the M25 corridor.

So it was then that after the Pioneering Partnership event at County Hall in London, I trundled to Marylebone where I caught the train to Gerrrads Cross. It was only a 20 minute journey and Liz kindly met me at the station.

Liz did everything she could to help me settle into the hotel and was on text in case I needed any help. The meeting the next day was in the same hotel, so a nice easy location.
The following morning I found the biggest shower head I’ve ever seen in a hotel..

The controls were very easy push buttons ones too

But why, when refurbishing a bathroom do designers not put the controls at the opposite end of the shower where possible? Then you don’t have to get wet trying to turn on the water and temperature right from the start? Hey ho…….

Anyway, Liz had also arrange for my toast to be brought to my room……

I wasn’t due to meet everyone until around 11 so had an easy start to the day. I was there to talk about how care homes can help people with dementia. There’s an awful lot of work to be done in this arena and they know that…..

I made my way down to the reception as Liz had pre-warned me that there would be a fire alarm at 10.30 😳, so thought if I sat in reception where no one would be panicking, I wouldn’t panic……….

Liz came and got me and we made our way to the room where staff were waiting – they were made up of Activity managers and Dementia Care managers from this group of 13 Care Homes. That yellow thing, which we havn’t seen for ages in the sky lately, decided to shine and the garden outside looked lovely being dry for the first time in ages……

Before me, Danielle gave them an update on their planned dementia training as they’re doing a revue of all their training for all staff at the mo. They acknowledge that their current e-learning module falls far short. They’re focusing on not bombarding staff with facts, but with reality and on a practical level.

It was interesting to hear their plans for training and the thoughts of the staff. Care Homes get such a bad press, from me as well; but this group is really spending it’s time and money where it matters……on training ALL staff.

Me next and I must have spoken for over an hour……including my pet hate……

”Please don’t treat us like children. Why put murals on a wall depicting a sea side scene when you could take us to the sea side? Why have roller blinds depicting a window and the view beyond when there are real windows with real views? Why have a pretend bar, a pretend bus stop and a pretend street when we would benefit far more being taken to the real thing? 

And

”Live in our world as we can’t live in yours”

There was so much I didn’t say around pain, reducing hospital admissions, personal stories, colour, black and white photos,  amongst other things. But really I could have spoken all day and not got through everything…..I didn’t type after this until I got to the station and by then…….acrabradabra……the detail had vanished……….🙈

I know staff came up afterwards and asked me questions, I know I was appreciated by their lovely smiley faces. That’s all that matters to me. As long as my words don’t float by and out of the window, I’ll be happy and I really don’t think they will as their care and passion to get it right shone through.

Someone kindly gave me a lift back to the station so apart from the journey home…..that was my suduko over for another week……..

I can’t believe I didn’t take any piccies with their lovely smiley faces!!!!!!!! 😱😳🤯😩…so no photos to show you, except of the garden……🤐

As the journey home trundled along, the grey gloomy skies seem to be at war with the sunshine and the sunshine was certainly losing……🙄😩 Nice while it lasted………

P.s……on Saturday I had a knock at the door and these were waiting for me as a thank you ❤️

Pioneering Partnerships: putting patients first 2019 ……

After a wonderful couple of days at Woodbrooke with playmates I was solo once more as I headed to London for the above conference – a very different kind of event.

The aim of the conference is:

“ to inspire and inform partners across the health research sector to better establish links with experts by experience to create a more inclusive and relevant research environment for patients, carers and the public…….. Patients have a crucial role in medical research, not only as participants but as active collaborators. From generating research questions and designing clinical trials, to participating in complex research studies and developing personalised interventions”

I was there as the Keynote speaker, a society ambassador and research network volunteer. The first part of the day, being sponsored by the Alzheimers Society, I was there to talk about my involvement in the research world and how the current world might be improved.

The trundle to London was fine and I made my way to County Hall on the banks of the Thames near the London eye. Heavy skies hung over the London Eye

My hotel was just across the Thames and a welcome silence welcomed me in my room. I’d noticed it was a strange shape room with the bathroom door on a corner instead of round a corner…..anyway, I went through my usual routine of settling in and eventually switched off the light…..

The unusual shape was to be my downfall as I got up to go to the loo in the night and forgot about the strange shaped room…….stumbled and whacked the side of my head on the corner of the wall…….🤕

When I got up the next morning, the event showed bright and clear on the side of my face…..will either have a black eye or a bruise down the side of my face 🙄

The venue was right next to the hotel and the man on reception made sure I turned the right way out of the door……

I was met by the organisers and shown into the event room, which was a sell out. I was so happy to meet the person who would be introducing me as I realised it was Deborah James (@bowelbabe) who has stage 4 bowel cancer and has the most amazing podcast “You, me and the Big C’, which is truly wonderful, uplifting and honest.

Had to have a selfie….

Deborah started the day with general housekeeping and encouraged everyone to log into SLIDO.com which allows delegates to ask questions during the day…….

She introduced me very kindly and I opened the day…….

I said many things including…..

“We are experts by experience. Your expertise alongside ours is a winning formula! But don’t unestimate the skill involved in arranging public involvement”.

Deborah  was after me. She told us that before being known for living with cancer she was a Deputy Head and was a Research Lead for Education…..she is such a lovely smiley person and said how she so agreed with me about language and being valued.
Her passion for research didn’t stop when she got cancer. Patients know their bodies better than everyone else. Staggeringly it was only after going private that she got diagnosed as doctors put it down to IBS even though she was passing blood….☹️….She has two young children and after the initial shock she started talking about research but in a different environment ….she has an amazing ‘pooh’ outfit

Her reason for the outfit is to break down the barriers. She emphasised “LIVING’ with the disease. Her and her wonderful friend’s podcast changed their lives. One of the presenters, Rachel, died recently, and even that happening was talked about and mourned very publicly on the podcast.

As a patient you think that being on a research trial is your only option as other options have run out. But it’s not necessarily so. She wants hard evidence, not a vague theory. She also spoke of needing HOPE. She met the researcher who discovered the drug she’s now testing. But he found it 20 years ago so the process takes forever…………..some of the procedures keeping her alive were not around 5 years ago. Research is keeping her alive.

“It’s my Cancer, My Personalised Care, I am the data” – this will hopefully help others which also gives her hope. It’s knowing what’s right for each patient and putting ownership back in the hands of the patient.

The challenge is to use the right language, giving people information, giving them options to demystify research and more chance to enjoy life.

After Deborah there was a panel and the question was:

“Does patient involvement make a difference?”

The panel was made up from Parkinson’s UK, a patient, a medical director, ABPI (can’t remember what that means) and Simon Denegri from NIHR.

Mike said, ‘Would Apple research the next IPhone without involving people who would use it – medical research should be the same.’

It was good to hear one say how can we make the experience better. Deborah said how much easier it is to make the decision if we know the stats – what % of people who volunteer to take part are on the trial?

The questions from SLIDO.com were being fed through live on the screen behind.

Simon said how evaluating involvement shouldn’t be about ‘proving’ but ‘improving’. Changing the way things are done in research.

Deborah asked what are the biggest challenges to avoiding the tick box scenario. Mike from the pharma company, said how the change has to come from the top of the organisation. They have to see the value in the outcomes and now it’s mandatory in his company for people to be involved at the start.

Fascinating to hear the argument from the other side of the fence. Many questions from the audience. I couldn’t use SLIDO so couldn’t ask via that…
But I wanted to say how we’re all converts in the room, we all have a passion. How do we get to a more diverse access to people who don’t know anything. “We don’t know what we don’t know”. We’re in the minority. When you’re diagnosed with any condition you’re probably not even aware of the charities, the societies that exist to help. So how are we suppose to know the myriad of opportunities that exist in research. So we have to normalise talking about research at grass routes level – at clinic level, Gp level, community level.

During break lots of people came up to chat, from Northern Ireland, Australia and many many charities and lovely people, even Twitter pals, which is always a joy.

The man after the break from Birmingham University about tumours spoke so fast my brain couldn’t keep up with him. He also spoke in very technical clinical language, so really I didn’t have a chance…….so havn’t got much to feed back…..

Mark Briggs then spoke about Advanced Therapy in Wales and Cancer Services. We all know the Health care system is unsustainable. We need fundamental change, new techniques, new approaches. He spoke of the successes in cell and gene therapies. All the individuals on screen were terminal but around 40 % have now been given an extra life through research…..

So maybe if you see if you’ve inherited a certain gene it can be targeted to prevent future disease. The need for close partnerships involves education of everyone to make the right decision that suits them.

He gave a lovely quote:

“If KPI’s we’re measured in inches, we’d have lots of success , but sadly there are many written documents that are often unread.”

Much better speaker……

Jill Pearcey from ABPI (association of British Pharmaceutical Industry) was up next who’s talk was around the new publication Working with patients and patients organisations.

No one should need to be an expert in the industry to read a document that talks about public involvement. Clear language is so important. Payment issues are covered in this new document. The document covers 6 themes – Principles, Definitions, Events and meetings, Research & Development, Product launches and Payment. I liked the way Jill covered and stressed, “Explaining why’ something happens as it does. Because if people understand why, they are better informed and understand the process better. It’s published today on the ABPI web site.

Jon Spires from Autistica, the UK’s Autistic research charity, spoke next about their relationship with Industry. They’ve had a very strong involvement in partnership with the public. Again, language is important and he spoke about ‘autistic people’, not patients. Interesting that they never use ‘people with autism ‘……

There were then break out sessions and I was asked to be recorded for the Collaboration research taking place by the NIHR. They are hoping to capture lots of personal stories and the question asked went something like.

“What’s been the biggest impact from being involved with research?”

My response was that it was two fold. For me personally it had given me a sense of worth, value and purpose again. But also it enables the researchers to see the reality of their research; their research question may sound brilliant in theory, but if it won’t work in practice, what’s the value. It’s a two way process of knowledge sharing.

Always interesting to hear how other communities work, the issues they’ve found and the language that group prefer. Sadly I had to leave at lunch time to head for the final event of the week in Gerrards Cross.

What was abundantly clear was including ‘experts by experience’ no matter what the condition, is a winning solution when viewed as a partnership. I met some wonderful people with wonderful stories and listened to a myriad of different specialist researchers in different conditions.  It was so nice that it wasn’t dementia focused as it meant I met new people related to different conditions and we all had one thing in common – that we want to make change happen…….fabulous…….

Final Day at Woodbrooke…….

The rain had fallen all night long at Woodbrooke. Sleep had been very hard to come by, even the silence and peace hadn’t made my banging head disappear. But was looking forward to our final morning together before heading to London. We had breakfast together and a catch up. Philly mentioned having gone out early in the rain to do some sketching which made me go out and take a piccie before we started……

Agnes took us through a ‘living in the moment’ 5 minutes with our eyes closed to relax before we started the day. If you’d like to hear Agnes do her 5 minutes relaxation exercise you can listen to it it on Dementia Diaries

https://dementiadiaries.org/entry/10009/agnes-shares-her-short-relaxation-session

We started off looking at the Research Pack, which Rosie helped with as well as the Open University. It is designed for use by people with dementia. It’s available on the DEEP web site as a pdf document for anyone to view. It’s a work in progress and will change as we work with over the year and version 2 will come out next year.

https://www.dementiavoices.org.uk/dementia-enquirers/

The first part of the morning will be taken up with a debate about what “people with dementia in the driving seat of research” actually means.
But before we started we reflected on the day before and said how we felt apart of something amazing in a comfortable safe environment. I always feel comfortable in the knowledge that Rachael and Philly will make it good.

So to the debate…chaired by Howard and being filmed by Philly…

 

He asked us what being in the driving seat means to us. I said:

‘How it’s us leading and inviting experts in to help enable us to do the bits we find difficult – researchers coming through our door instead of us going through theirs’

We spoke about whether it mattered that the Dementia Pack was in the main written by those who don’t have dementia. But we’re not naïve enough enough to think we could start With nothing. We needed a starting point and this is our starting point and the next version would have more from us as we learn over the year.

Tom used the analogy of him liking to bake soda bread, which he does well, but he’s never going to replace the baker who makes a whole range. Each has it’s place just as we will have our place, researchers have theirs. There’s room for us all. All we’re doing is dispelling myths around our capability.

Rosie said, It will be useful for academics to see how we can use ordinary language without taking away scientific integrity.

It will be interesting to see how our high emotional feelings affect the research and this is where our supporting researchers can help by putting our questions differently to us.

We discussed what will make it difficult for us. I said how remembering what’s gone on in past meetings. For me every meeting is a new meeting, which is probably why I have so much enthusiasm each time.

It’s not everyone’s cuppa tea to be in the driving seat and we have to respect that. But we should also inform people and support people should they want to try. We have to show what being in the driving seat looks like for them to make informed choice.
The concluding question was what we do next to put people in the driving seat. Rosie suggested writing journal articles. Tom and David said “DON’T START YOUR OWN JOURNAL’!!! Special editions and getting into other non related dementia conferences. Our enthusiam and help of those people around filled us with enthusiasm. David, from the Mental Health Foundation said it will unlock the key to show academics what can be achieved in all arenas.
What we’re doing is unprecedented – we mustn’t forget that…..the time is right…..

And Philly revealed her secret drawing behind the flip chart….a talent is discovered!

Break time…..

So after a cuppa the final session was on next steps when the National Lottery have agreed our recommendations. We had 4 things to consider.

We want to know that things have change as a result of this project and so we intend to have our next Oioneers gathering discussing the ‘Theory of Change’, which sounds very heavy, at St Katherines in London .

It’s been suggested we think of 5 outocmes we hope to see. Sini, a Swedish reasearcher has offered to help us. We decided we needed to change the title……Tom and David suggested we don’t invest too much time on this as most of what we achieve won’t come out until towards the end….

The second question was ‘Measuring Belonging’ – do groups feel more connected through this project maybe to the Deep community. Chris Clarke, Clinical Psychologist from Hull Uni is wanting to work this us on this. How does working with projects together affect our feeling of belonging. Chris couldn’t get to the meeting in the end so we couldn’t ask him questions sadly.

The third was around a seminar every 6 months on a particular topic to which we could invite pioneers, advisors, enemies(😊) – thinking of 3 issues – diversity, ethics and the third being what we can learn from the broader disability movement and vice versa about involvement in being in the driving seat. What can we all learn people with dementia learn from the wider disability community regarding research.

The last agenda item was whether us as Pioneers wanted our own research project? David told us about the project 20 years ago when Asylums were being closed down and he worked with the British Library and captured 50 oral Life stories of people who had been in these asylums and captured their stories on video. We got very excited at the different mediums we could record on this project.

Our enthusiasm along with the suggestions from Rosie, David and Tom was sparking loads of suggestions and left us all raring to go……time for a last piccie in front of Tony Husbands wonderful Dementia Enquirers cartoon

Crikey, where had the time gone……? A fascinating 2 days.

Why do I trust Innovations?…….because they’ve never let me down. I feel so comfortable in the company of Philly and Rachael, that if something goes wrong, they’ll know how to sort it for me. Basically, they make me feel safe and comfortable – They just get it…a rare breed……..

Now to London for the last but one event of the week…….a very different type of event…..

First of Two lovely days at Woodbrooke……….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Poor Philly was getting brain ache from all the maths

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

Finally ………We finished!!!!! 🙌🙌🙌🙌🙌🙌🙌🙌🙌

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

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

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

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

A Day in York with my Playmates…….

Yesterday I had a trundle into York to be with my playmates from Minds and Voices. We’re helping Edinburgh University with the construction of their ‘Beyond the Margins’ course. Seems a strange name to have given it as it doesn’t actually tell you anything…..must remember to ask them why they chose it……..Yesterday we were being asked:

“What happens with the rest of life when a person has done a course such as Good Life with Dementia, or is part of a group like Minds and Voices – i.e. the group meets once a month – what happens the rest of the time? How does it impact on the rest of life, other areas of life?”

They hope to ask us questions such as:

• What were your feelings about living with dementia before coming through the door of Minds and Voices?

• What were your feelings about living with dementia after coming through the door of Minds and Voices

Anyway, the early start and bus changes meant I had to catch a train. The forecast showed how the rest of the week would be continuous rain 🙄 but the Westwood showed a sneaky peak of the blue skies we would be missing for the rest of the week

and the Humber showed how the rain a coming……..

I then had a major panic………I opened my ipad and nothing, nada, zilch…….😱😱😱😱😱😱
Switched it off, switched it back on and blank screen. Now I was using it first thing this morning so know it was working AND it was almost fully charged🙈……..

Couldn’t do anything but close my eyes….and hope when I plugged it in, it would come back to life…..anyway, Damian picked me up at the station and as soon as we got to Lidget Grove I plugged it in………still nothing but a sad blank screen staring at me 😩……Damian started to google what to do and so did I on my phone – Anna arrived and we told her why the tea wasn’t made yet🙄……..we tried all the suggestions and the one thing it said was “Don’t Panic”…..😂………it came back to life momentarily twice but then went dead again……🤐….there was even a suggestion of ‘burping your ipad’😳😳😳😂🤣😂………I suddenly pulled the plug out to try and connect to Damian’s ipad when………DA DA……it came to life…………❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️🤯🤯🤯🤯🤯🤯🤯🤯🤯 phew! All was suddenly right in the world…..and I could finally settle………thank goodness for Google…….

Playmates started to arrive……followed by Julie and Jane from Edinburgh Uni project team.

Julie kicked off the morning with another aspect of the course, the personal development plan with the questions above being discussed. How has coming to this group for 2 hours a month changed the rest of your life. Julie showed a picture of the Secret Garden Door…….and what happened after we went through the door and life beyond….

We split into two groups to discuss. I always find two groups in such close vicinity difficult as you can hear all the conversations and it just starts to get jumbled……

Anyway we had to say how we felt before we walked through the door for the very first time…….I said ‘Uncertain’….because I didn’t know anything about dementia back then, I had this image of a room full of elderly people who might not be able to communicate and have a conversation. It was daunting. Goodness know what made me walk through the door! It’s very daunting for anyone to walk through a closed door….

Stuart said, ‘I was glad I was at Church that day to hear Damian talk about the existence Minds and Voices’

I said the most important week of any course is the week after it’s finished. So for a 7 week course, it’s what happens week 8 for the person that matters.

Jane asked us what happens the day after Minds and Voices and Paul said, ‘Life goes on’ We’ll have forgotten yesterday and the day after becomes the important day. But we all said how the next month we look forward to coming to be with everyone again. And Stuart said, if some people aren’t there we immediately want to know where they are and if anything was wrong.

“If there was no Minds and Voices I’d be in a different world” said Stuart………”it’s better than any medicine”….

We spoke of how we felt when we walked out of the door that first time……I said I felt hopeful, we were just people in a room who had come together who under any other circumstances, may never have met’

Cuppa water time………..

And time to reflect on all the stuff

After much laughter, chatting and distractions, we got down to work again, this time looking through documents to enable them to design better documents for their course – taking all the good bits and doing without the bad bits or changing them..

We all said how the front page wasn’t welcoming or told you anything about the course.
The images were too small and could have been far better if the choice of animations maybe had been chosen.

On the second there was too much information but a lovely ‘Welcome’ sign and piccie of a cuppa tea. But the rest was too much detail and colour.

We spoke of language being important, so things like, ‘facilitator’ not being used…as it might make some feel as though they’re not good enough if they don’t understand the language.

Jane asked how long a film should be…….and we all said short snappy films, and whatever way you’re presenting information nothing should be longer than 5 minutes. Being asked to write anything, everyone said a no no as each and everyone of our group said it might make them feel stupid and under pressure……

It felt a bit like Goldilocks and the 3 bears…….they now have no excuse than to design something just right……no pressure….😊

The time passed so quickly and before we knew it the taxi drivers started to arrive to take everyone home. After hugs, laughter and goodbyes, we all went our separate ways…

Damian was kindly my driver to the station along 5 others!! Good job his car is a tardis………

As I sat upstairs on the bus home with the rain already in full flow…I opened my ipad and guess what……..blank screen once more ……😩…..but at least I knew what to do this time…….and I had it going in no time at all…….😇

A WOW Day at York Festival……..

Yesterday was looking to be another WOW day at York Festival….I was asked to speak in the afternoon and found out I was being introduced by my lovely friend from Radio York, Jonathan Cowap. They’d offered to send a car to pick me up but I just love the bus trundle to York through the Yorkshire Wolds, so took up their offer of a lift home instead as they were due to take us for a bite to eat afterwards and that would save me making anything when I got home 😇

I just havn’t had a clue what to wear this week as the weather has been staggeringly mixed. My heating even surprised me by coming on automatically this morning 😳…….so I went out for the village bus first armed with my raincoat and found it to be gloriously warm🙄……….so that will probably end up being carried all day…….🤐

Anyway, the first bus ride into town was made all the more lovely as the traffic had come to a halt as the town cows had decided they wanted to try the grass at the other side……..love our town cows…☺️😍

Then the nice bus trundle into York. I had a load of train tickets to pick up so would be trundling to the last stop…..😍 it’s often misty over the Wolds, still beautiful but on a sunny day like today, you can see for miles. And from the upstairs of a bus, it’s even better….

Anyway, I got to York…..picked up all the train tickets for next week and decided to treat myself with a cuppa Betty’s speciality tea……

I went for Pi Lo Chun Green tea, which was really nice. I wanted to try the Ceylon Blue Sapphire, decorated with blue cornflower petals (just because it sounded pretty)…….but the mention of honey made me think it might taste too sweet for me……..a very civilised way to spend an hour . I’d had a stupid cold all week too so I was able to dose myself up before heading to the venue….

I was met outside the library by Beth who showed me into the room and made me a cuppa weak black tea before the lovely Jonathan arrived…….

Me and Jonathan chatted away as the room filled up……….

It was a sell out and so it began. Jonathan gave me a lovely introduction. We’ve been friends since I was diagnosed and we meet on his morning Radio Programme a couple of times a year.

I chatted as I usually do for about 45 minutes talking about this that and everything. There were tears in the audience but complimented by an equal measure of laughter. I read two pieces. The first set in York, very aptly and ended with the funny Billy story to end on a light note.

At the end, people asked many questions…..can’t remember what but Jonathan had to bring it to a close with hands still raised. Books were on sale from the local book shop at the end and they’d actually not brought enough as some went away empty handed, which was shame. But everyone queued for a hug and a chat whether they’d managed to get one or not. Bloomsbury had even supplied these lovely postcards, which had a question for everyone on the back.

I met a lovely Twitter friend, lovely people and listened to their stories and answered more questions. Two women came up to me to say they were nurses I trained at the hospital in Leeds, which was amazing. Two women came up to me and I knew I knew one……when she spoke, in tears, she said – It’s Alison – I realised it was playmate Alison from Minds and Voices – more tears, more hugs……A couple of people had waited outside as the room was full but had come inside just to say hello and buy my book……

Many special stories were related, but one which made my day was from a couple, the wife having dementia. They both waited until the end to come up to chat.
The husband said they hadn’t dealt well with his wife’s diagnosis and had been in a bad place. Now, armed with my book, they were going home to start living……❤️…what can I say……..makes the sheer exhaustion of these events so worthwhile………

The room now empty, goodbyes said, Beth took me for the promised bite to eat and we chatted happily for a couple of hours before the University driver came to take me home. I chatted happily to him for a while before going all quiet. I apologised, saying I was a bit like a Duracell bunny and my batteries had now run out………

A fabulously emotional day………..

A day in London……

Yesterday was due to be a very lovely day as I was meeting up with lots of playmates, old and new, in London. All the current Alzheimer Society Ambassadors were meeting up with 4 lovely newbies. I can’t remember the last time we met as a group so I’ll hopefully get a lovely piccie.

It was a lovely day as the taxi pulled up, but torrential rain was due to meet me on my journey home.

As we trundled passed the Westwood you wouldn’t believe the weather that was forecast

So what to wear! Warm in London, heavy rain when I get back 🙄….so my raincoat made the journey with me aI’ll just be hot in London………..

As we trundled passed the Humber the sky showed the change that was coming………

I was heading for Doncaster on the first train and hadn’t realised I’d booked the reaaaaaaly sloooow train which stops everrrrywhere🙄……hey ho……

We got there eventually and soon the London bound train arrived……I would have caught an earlier train but they gave me the wrong time on the initial email and when the agenda came through I’d already booked my tickets so I’d be arriving after everyone else…..😔 It’s never nice arriving late after everyone else as you havn’t been part of the settling in process and feeling comfortable…….🙄 at least I’ll be with playmates…..

Anyway I arrived in London and guess what…..raining…….thank goodness I’d put on my raincoat….. I trundled down to the tube which took me to Tower Hill and then another ‘google’ assisted walk to the venue……well that’s what I thought……my latest programme faithfully printed and in my pink folder said the street was ‘Crossrail’…….well it certainly wasn’t as google wanted to take me miles away…..😳…..now what do I do?…….ask a smiley face!…..first person hadn’t heard of it and neither had the next ……🙈……so I popped into a local café and luckily they’d heard of the venue building…..turns out it was Crosswall……

I finally arrived and came in with Maria in full flow about the role of the Ambassador

I sat next to a new ambassador, new playmate ……wonderful 🥰

We had a discussion round the table and asked the newbie what he would like to do as an Ambassador. He said he’d just like to do more to encourage others to do …

”I want to give back what was given to me”

The second question was about ‘How do we encourage others’ and I said how it actually helps our dementia by ‘doing’, by feeling appreciated, by feeling valued.

The third was around challenges…….Siezed my opportunity and said about typing the information right and directions.🙄…….well no one will learn if we don’t pipe up……

Each table fed back their views……good to hear from everyone and gave me a chance to see who was in the room……

Can only the backs of people as I’m not allowed to say who has been invited to be a new Ambassador as it will be announced later in the week……🤐

Lunch time and a time to catch up and chat with playmates, and me and Keith got carried away and had to be chivied back into the room 😂

After lunch it was my turn to talk about my experience of the media. I told them how I cope and what I’ve learnt including my tips and advice and ending with…..

“Don’t be downhearted if you feel it hasn’t gone as expected – it will fly by and you probably did far better than you think. Most people don’t expect us to be able to say anything so saying something will be a revelation to them in itself.”

Akriti Farmahan, media manager, was after me to give information from the Alzheimer Society viewpoint. Telling us about their relationships with the media. How Storytelling for change is very important and a powerful way of influencing change.

We gave feedback on issues we’d had, which is always good otherwise how can we make things better…..

I had to leave a few minutes before the end due to the time of my train which was a bummer as it meant I couldn’t get a piccie of all of us, well the current Ambassadors, Chris, Keith, Joy and Hilary…..hope I havn’t missed anyone out……🤔

Outside and a wet London greeted me and a long wait at the tube station so a good job I’d left that little bit earlier……just got to Kings Cross with minutes to spare…..phew! A grey murky trundle home but at least I was on the new Hull trains service direct to Beverley so no changes!🙌

A lovely day meeting new staff and some wonderful new playmates – I call it ‘succession planning……..😊

A Trundle down South……..

Yesterday saw my first venture out since the chaos of Dementia Action Week. It had taken me all this time just to feel less discombobulated. I’d also uncharacteristically been sleeping lots, which was very nice, but meant I didn’t sleep much last night as I was worried about oversleeping 🙄 can’t win……😊

So back to yesterday……I was travelling down to Fleet in Hampshire. It had an autumnal feel to the morning, cold and foggy…..bizarre weather lately. It was the first train of the day so the silly oclock start meant me and the driver trundled down to the station in silence – a tad too early for both of us.

I was heading down to a new destination as I’d been asked by Francis Bosompim if I would speak at a family event for family members and staff of a care home that he is supporting around dementia care.

The early morning spring sunshine was trying very hard to burn the fog away.

It was so cold on the train they brought round blankets 😳……..Francis txt me early on in the journey to check everything was ok, which is always so much appreciated. I’d had a moment of panic the day before as I couldn’t get in touch with him to check the final details. Just me being over cautious and wanting to feel safe but he made up for it on the journey.

The event wasn’t until 2pm but they’d kindly agreed to me having a hotel for the night and booked me an early check in. This would mean I could have a snuggle after the long journey.

The first train arrived in London and I caught the tube to Waterloo. I have another new app for the tube journeys, as the maps they give out have such tiny print I can’t make it out. I can’t remember if I’ve ever been to Waterloo station before……but I arrived amidst chaos……so many trains cancelled or delayed due to signalling problems (they must have heard I was coming🙄). Not knowing the area, I spotted an earlier train to Fleet that seemed to be one of the few still running so went for that one…..just in case. I would only arrive 10 minutes earlier but Francis had said it was no problem as he’d emptied his calendar for the day to make sure everything went smoothly 😍……big brownie point from me.

He was waiting on the station platform for me and drove me the short distance to the hotel, making sure I was able to check in early and just get settled for an hour.

Francis studied at Bradford University so had some very good teachers……..having come over from Africa in the early 2000’s, he’s now committed to improving the lives of people with dementia as a Gerontologist.

He works for the large care home group, Sunrise and Sister company Gracewell. I would be heading to one of them, called Gracewell of Church Crookham located in Fleet. Sunrise is more residential focus and Gracewell is more clinical and nursing home type. And right on time Francis came back to the hotel to take me there along with Lisa, an Activity coordinator from Sunrise.

We sat and chatted in a lovely open café area, looking out onto a large garden space

about everything including the Sunrise residents trip to M&S and having a lovely time and Francis’s trip to see the Dementia village in the Netherlands. Francis spoke about the cultural differences in various areas of the world including Africa and America – fascinating and could have listened to his thoughts all day long.

The time rolled on and I was taken to the ‘cinema room’ where staff, family and a few residents were waiting to hear me talk. I chatted about all manner of things, as usual – focussing on the CAN and ignoring the CAN’T; adapting; challenges and solutions before ending by reading the story of Billy.

There were questions at the end – can’t remember what, but asked by many. I chatted to some residents as everyone was leaving and each said how they loved their new home. They were lovely and many bought a copy of my book.

Afterwards we went to Lisa’s work at Sunrise Senior Living a short drive away which had a very grand entrance.

I hadn’t really realised where I was talking until I saw the Sunrise sign at the entrance to the home. Then I realised I’d seen their stands at many conferences….

Residents were just coming back from an outing and were sat having tea and cakes …..And look at this amazing scrabble board in their café – one of the residents was keen to point out that a child had been mixing all the letters up …I hadn’t noticed..😂

Francis tried his hardest to get me to eat snacks and sandwiches of every variety before asking the kitchen to make me a packed lunch to take back to the hotel…….I’ve never eaten so much…..😂 He then went and got the money to refund my expenses….in cash….wonderful and saves so much hassle.

Once back in my room I asked Mr Google to find out some info for me about Francis……

it turns out this amazing man was awarded the prestigious Dr Trevor Jarvis Award by the University of Bradford for his exceptional work on dementia care. He omitted to tell me that! Trevor and his wife Anne were wonderful friends and I still miss seeing them.

Another wonderful day in a new arena for me……..I’m so lucky……what a contrast to the Panorama programme on the Social Care crisis last night😔 but that would need a whole new blog to discuss…..

Day 3 of 6………Dementia and End of Life Care Conference …….

So after yesterday’s stress and chaos in travelling, I was hoping for a smoother day today…..🙄…….mmmmmm……sorry long blog, but such an interesting day…..again 😊

I’d spent the night at Stoke on Trent ready for this Douglas Macmillan Hospice Conference. There was a knock on my door in the evening and they sent a gift bag of gifts for me, which was a lovely thought.

After a restless night, the morning dawned and I was due to meet Admiral Nurse Karen Harrison Denning in reception at 8 for us to drive to the venue. The support I’ve received and organisation has been wonderful for this event every step of the way. They couldn’t have been more helpful.

Anyway, we drove the couple of miles to the venue at Keele University. As usual, a University is a labrynth of roads and turnings but we eventually found the destination with the help of a delivery man!

Joe Potts, Clinical Projects Manager, greeted me with a lovely smile and showed me to the table where I could lay out my books and have a sit down and a cuppa……Peppermint tea 😳😱……….I’m experimenting…….🙄 Peppermint is out of the running…….

A lovely man, Alan, came up to me to say hello. He was a career for his wife and now spends his time raising awareness. He even follows my blog ☺️. He told the most wonderful story of he and his wife – I’m always saying, everyone has a story to tell, it’s just taking the time to listen. Just had to give him a hug…….

As people started to arrive many came over and looked at my book with curiosity, some already knew me and purchased a copy. They were expecting 150 delegates and the room soon started to fill.

Joe kicked off the day by asking everyone to log into a website to say where they’re from . 27% from the NHS, 44% from the Hospice sector, 21% from Care Home and other………a fab mix. Very techy…….😊

Housekeeping first by Jannette McCartney, Director of Care at Douglas Macmillan Hospice ( they have an Admiral Nurse in their Hospice ⭐️ and at the moment 10% of their patients have dementia)
This whole event it was sooooo well organised and thought through, even to getting people fill out the evaluation form online otherwise before they can get a certificate of attendance 🙌 and also to get a yellow strip signed for each stand they visited and at the end a draw would be made for a prize – very innovative. I personally cannot fault how I was looked after at every stage of the way, by Joe and Lesley. If only every event supported me like this 🙄

First up was Karen talking about ‘Future Challenges – Let’s start with uncertainty’……..
I was sat on a lovely table with lovely people, some were Twitter friends who I adore meeting😊

Karen showed questions they wanted people to think about throughout the day:

What are the challenges in providing end of life care for people with dementia?
What needs to happen to improve end of life care? Can we predict this in dementia?
What resources do we need?
What will I do?
Who can help us?

She gave interesting figures – how 30% of us will die from or with a diagnosis of dementia but only 25% of those diagnosed will live to the end stages as people die of another condition.

She asked, ‘Palliative care is considered when there is no cure, but where does that fit in for someone in their 50’s with dementia?’

The symptoms experienced in the end stages are similar to that experienced by people with cancer but professionals find it so difficult to deal with these symptoms appropriately for people with dementia. (Pain, confusion, constipation, low mood) Karen spoke of the Admiral nurse intervention for the family and managing comorbid conditions. She concentrated on pain, which often goes undetected as their behaviour is often put down to their dementia. Often distressed behaviour comes out in anger, shouting, but also by becoming withdrawn, which can be forgotten. ‘PainChek’, intelligent pain check, can show distress simply by changes in the face. Pain is often underrecognised and under treated with people with dementia.

A wonderful, insightful talk with a wonderful quote about where Dementia fits into the the health system…..

“Dementia is homeless”

Hospice and Palliative care could given dementia a home due to all the skills they possess.

It was me next……..I spoke, as usual about all manner of things, but focussed more on how hospice staff and healthcare in particular including:

“The psychological effect of words and expressions on faces should never be underestimated by any healthcare professional. The way they start the conversation or simply talk about it can make or break that person.”

During break I had many piccies taken and sold all my books, which was such a relief as it meant my suitcase for the week would be emptier and lighter. I met and talked to some wonderful people especially Alan who I spoke of earlier

After break Wendy Mountford, Admiral Nurse at Dougie Mac Hospice spoke and gave a lovely quote:

“Examplary dementia care is about measuring the person, we can’t offer standard size care and expect it to fit everyone”

She spoke of the different levels of support needed for the person but also those around them and spoke of Tom KItwood and the importance of Personality, Biography, Health and Social Psychology. Kitwood’s flower appeared on screen that has LOVE in the centre.

She spoke of some research by Clive Ballard from Exeter in Care Homes, which found that residents had only 2 minutes social interaction per day….😔

Jackie Jones followed – talking about Dementia and End of Life from a carers perspective. She cares for her mum with mixed dementia in the final stages. Jackie spoke, the same as me, of the black hole you drop through after diagnosis. The foreign language that existed when talking to social services……she spoke of the transition from Residential to Nursing home and the significant traumatic and highly stressful time for the family.

Jackie showed a fab slide that contained a diagram of interventions co-ordinated by Jackie herself. How are we suppose to navigate such a complicated system….

She ended by talking about the power of touch.

It was another wonderful presentation which blended nicely with mine. I always say that our lives often run parallel but both are equally important with equally important needs.

The Q&A session for those of us that had spoken in the morning was very high tech as people had submitted their questions and comments on line and they appeared on screen as if by magic !– perfect, and enabled those who don’t like standing up to submit a question or comment without embarrassment ……..great questions on pain, Advanced Care planning, how does the carer keep herself well and many more.

Fabulous way to end the morning and my day with these amazing people…….. and sadly it was time for me to leave for the next event down in London…….still no mobile network so I’m feeling cut off from my lovely silent world of Twitter……ooooo and my daughters of course ……🙄…..Wonder what this journey will hold………if only I’d known what was about to transpire…….🙈……….more tomorrow…….🤐🙄