Category Archives: Involvement

Dementia and Cancer….

Yesterday found me heading for Leeds Beckett University. I offered to be a monitor for this interesting study on living with dementia and having a diagnosis of cancer. The Alzheimer’s society funded research always have a team of 3 research monitors where possible on each project. Our aim is to encourage, offer advice and sometimes simply listen and share in their successes and challenges faced.

My 2 partners in monitoring for this project are Annabella and Anne

I was very lucky as the student undertaking the project lives close by and so was able to trundle me in her car instead of navigating the trains…..

And so it was that Rebecca picked me up at the agreed time. We had a lovely drive to Leeds and I was able to get to know Rebecca. She’s only just started her PhD and it’s wonderful to be involved with her at the start of her study. Today was her third day!

Her study is looking at the care and support needs of those in residential care homes who have both dementia and cancer.

We arrived at Leeds Beckett and had a cuppa before heading to the room. I was very impressed with Leeds Beckett as Yorkshire Tea is everywhere, even in the student cafe – so I’m glad to see education has got it right in Leeds…..👍⭐️🤓

We were met by my lovely Twitter friend Professor Claire Surr, Dr Rachael Kelley, both supervisors for Rebecca…..and Professor Alan White who has a special interest in Cancer. Can’t believe I forgot to take a group photo🙈

Anne and Annabella soon joined the party and we started off with cuppa teas and cake….

The aims of the project were detailed nicely in a slide

Rebecca’s background is marketing and public relations but has changed tack due to family connection with dementia and brings lots of different skills with her.

The project sits within the Themes of Leeds Becket and come under the theme of Dementia Care and services. It fits in so well with the other studies in hospital and Nursing home settings.

The combination of dementia and cancer throws up so many issues such as pain identification, symptoms being due to cancer or dementia and simply remembering you have cancer and many many more, making caring for someone a complex process.

Rebecca took us through her plans for her 3 years. She was very well organised which is a good start for any PhD!

Year 1 is a setting the scene year

I loved the simple way Rebecca laid out her slides with wonderful piccies to accompany.
I didn’t know what ethnography meant and found out it’s ‘observing’ and knowing what and how to observe but also knowing when to stop.

There’s a limit to the amount of time you have to spend on observing the experience of the person so there’s a limit to how many care homes you can visit so the limit has been set at 3- 6.

PhD students have the advantage of coming from the angle of learning and gaining access to e.g. Care homes, is often made easier because of this and they’re often welcome as long as they see a benefit and value in what’s being researched.

Year 2 – once ethics has gone through, was all about recruitment and had the cutest slide

They’ll also be a lot of interesting gender information that comes out of this. Professor Alan has an interest in gender and told us some wonderful facts which I wasn’t quick enough to type…..

The essence of Ethnography is listening to stories and observing , not interviewing.
Thinking of the location for talking and observing especially when interviewing supporters is important.

We then moved onto the role that we will play as Research Network Volunteers

We went through our expectations and Me, Annabella and Anne all contributed lots of questions and suggestions……there was so much enthusiasm and experience in the room that will be invaluable to Rebecca.

It’s only day 3 of her PhD so I could see her head exploding with the amount of information coming out of the meeting but I’m sure she will be so well supported and hopefully we too can be of help
We’re in the wonderful position of going through this amazing project with Rebecca but without the pain of having to do all the work. It felt like everyone, including Rebecca was on a high by the end of the meeting.

Professor Alan also came up with the quote of the day looking at all the cakes on the table……..

“I have a very strong will and a very weak won’t” 🤣😂


A Patient Story Workshop……

I’m part of a group that meets every now and then for the East Riding Clinical commissioning Group. Nicki Sparling, Assistant Director of Quality and Improvement, asked me ages ago to be a member and yesterday picked me up to attend the latest meeting.

The aim is  to co-produce a patient story process that is consistent across all organisations and review how patient stories are used in each organisation and for what reason.

I think I became involved when I spoke to the CCG board around the appalling experience I had when I moved to this area……but I might be wrong. I know I spoke to them about something and can’t imagine it being positive!

We want them to hear the reality of the services they provide from the people who experience them.

We got there and 2 people were already in the room. Nicki showed them the tea machine and went and got me Yorkshire tea in a mug 🤣😂🤣😂……brownie point instantly given……

So, mug in hand, many people didn’t turn up. We were expecting people from all over Yorkshire…..Some had sent apologies but others hadn’t…..never good and so impolite.

Lots more from around the region were supposed to be attending but few actually appeared. I often wonder why? Is it workload, lack of interest?

We started this work a year or sp ago but had to be shelved until now. So many changes going on which took precedence. So today we’re picking up the agenda and hopefully it will be actioned.

The important aim is to support any patients who speak to the CCG, or whose story appears anywhere but the other key important point is for something to come out of the situation and it not become a tick box exercise.

I love the slide Nicki showed

And this applied to the Trust as well as CCG.Some areas use Patient Stories already but it would be good to have consistency and having an open mind as to how we give people the option to tell their stories, both good and bad. Videos, someone else reading out, an article or being their in person……lots of options.

We all gave examples of ideas to gain stories. I mentioned the Willerby Research Team and the stories they receive on the advantages of research. We need to have positives and negatives and the CCG can use them to promote ‘listening’. The ‘You said, we did’ attitude for both good and bad stories.

I said what it mustn’t be is, simply collecting stories – no point in that at all. There has to be a value and an outcome for people sharing their stories.
We got onto the subject of payment for people who take the trouble to attend meetings. The staff are all paid, but the lay person isn’t.
If payment is too complicated I suggested using local businesses to donate gift vouchers and have good publicity for them as well.

After another cuppa tea had arrived…(everyone else pointed in the direction of the tea machine…..😂😇, )we went on to talk about the next steps.

As a CCG, they don’t have direct contact with patients but other providers will already be doing this so we need to tap into others already doing this – no point in reinventing the wheel……we want to establish principles and a process that each area can use…..
It can all revolve around permissions and sharing those stories.

2.30pm arrived and I was flagging after such a busy few weeks…..and no more typing exists.

But one final thought came out on how to describe the CCG to people who know nothing – a bag of money…….at the top of a picture and being handed out to hospitals, GPS, and all other services until the bag is empty…..It’s whether the money has been spent in the right places that matter🤔

As Nicki said at the end:

“The Patient Story is the start of the process, not the end…..”

A Trundle to Salford…….

After a bad few down days with dementia. On Wednesday I found myself on an afternoon trundle ready to speak at an event on Thursday morning in Salford. Sometimes it’s the ‘doing’ that pulls you out of the fog……

Researcher, Tracey Williamson, asked me back in February if I’d like to attend the end of study conference. The research had been going on for the last 3 years and they had been researching people with young onset dementia and their families/family carer’s experiences of health and social care services which are sometimes aimed at people in later life.

They’d already been to my house and recorded my talk, just in case I was having a bad day, so I felt like I knew them. They’d recorded me reading my talk, answering their questions and reading an extract from my book.

The conference was due to start earlier than I could comfortably get to Salford, so they’d kindly agreed to put me up in a hotel the night before…..hence the trundling starting on Wednesday afternoon!

Anyway, it was a gloriously sunny afternoon and I was able to catch the village bus and pop into Sarah’s for a cuppa before going for my train.

Tracey has agreed to meet me at Manchester station and take me to my hotel and amazingly my train left on time! It was sad to see the blackened sight of Saddleworth Moor as we sped past but even more clear was the acrid smoke that filled the train as the doors opened and stuck to the back of your throat……what it must be like for the firefighters in the thick of it, goodness knows…

Tracey was there as promised and we got a taxi to the hotel on Salford Quays – I had a lovely view of the water from my window

An even bigger surprise was the news that Joy Watson, who also lives with dementia and from Salford, was joining us for supper – Joy only came out of hospital a few days ago but was adamant she was going to join us and no sooner had I arrived, we were having supper and time for a selfie…….I rarely go out in the evening but couldn’t resist seeing Joy.

Chris Seward picked me up from the hotel in the morning and drove me the short way to the venue at Salford Uni where I was met by Tracey, John and a cuppa tea. I was soon joined by lots of new playmates with Young Onset from the Salford area, including Joy!!

Tracey started off the day with the normal housekeeping and then it was me to open up the day……..I said:

I’m not saying that it’s plain sailing because it quite clearly isn’t but if you look at a diagnosis as a new way of living, a life of adapting, it can make life much calmer and a little less stressful.”

And I finished off by reading an extract from my book about my glider flight.

There were many lovely questions, one of which was:

if you had to choose one type of support from the moment of diagnosis what would it be?’

My immediate response was peer support – the opportunity to talk to people going through what I was.

People were very kind in their support.

Tracey then spoke of the study itself and gave a history of it from the beginning. They had an Advisory Group from the start, some of whom were my new playmates in the room.

“Research is messy” it never goes to plan, said Tracey. It’s always about adapting and being creative. Just like living with dementia really!

It was then the turn of Luisa Rabanal to talk about the experiences they found in the study from people with Young Onset.

The participants were solely from the Salford area.

The findings were 4 main themes – the process of diagnosis, the impact of living with YOD, the needs and living well. Luisa gave quotes from the participants for each theme.

People got a lot of leaflets, a lot of information but it was face to face they needed at this time.
Most of the participants felt peer support was the key to help them feel safe with dementia. To see others who are further down the line and still ‘doing’ was inspiring for those at the beginning. One great quote from someone was:

“If I keep moving the dementia can’t catch me”

Not everyone has a positive attitude so we need to find ways to help them through practical coping strategies….

She showed a great summary slide

Luisa then moved onto family carers – as the research included them as well. I always say that our needs are equally important but our needs often run in parallel and never meet.

There are close to 700,000 people in the UK acting as primary carers and save £11 billion in care.

unsurprisingly, carers also said how leaflets were pointless and face to face support was also needed for them too. They have the same needs but for different reasons and again, a supporter of someone with Young Onset has different needs to those diagnosed later. Another great summary slide…

Now time for a cuppa tea👍

Followed by the turn of my new playmates to be on stage talking about their part in the Advisory Group from the beginning.

It was then time for lunch and for me to get to know some of my new playmates better, including comparing bruises where we wobble, lack of sleep and lots of laughter!

After lunch it was the turn of John Chatwin to talk about the experience of service staff and the final interviews.
They interviewed 25 staff in a range of services…..think I got lost in my little world at this point, as me thinks brain shut down must have started as I seem to have stopped typing….I’m sure it wasn’t anything to do with John!

I’m sure there was lots more but……🙄

Salford appears to be a good area for services, although they need to be more focussed when addressing the needs of those with Young Onset.

I was well looked after and everything taken care of in a timely manner with no uneccesary stress – thank you Tracey – and I shared a taxi back to the station with Luisa, which was lovely.

On the journey home it was sad to see the helicopters above Saddleworth Moor still trying to put out the fire……….and our train was delayed……..a train decided to break down in front of us…..🙈😴🤯
I might have got home with a banging headache in tow and later than I should….but dementia hadn’t won today……..

Minds and Voices meet Admiral Nurses…..

Yesterday I trundled on the bus to York for a different meeting for Minds and Voices, my peer support group in York with the most wonderful playmates.

It was a lovely fresh, sunny morning and many of the town cows on the Westwood hadn’t deemed it late enough to stand up yet and looked like they were just waking up – they looked like I felt, very tired……..I felt a tad out of sorts today, but knew seeing my playmates would bring back my sparkle……

The aim of this different meeting was to find out more about Admiral Nurses, who are in York and my area…..

Admiral Nurses hope to be Nationwide and are specialist nurses supporting families where a person is living with dementia.

I loved the way that Damian wrote on the invite how the day would start with the ‘obligatory cuppa tea’………..mmmmm, perhaps he knows I’d never go anywhere that didn’t start in this way………😂

Anyway, the taxi and the bus were on time and I arrived in York early enough for me to have an amble in my favourite city in the peace of the morning before heading to the venue.

There were lots of surprises when I arrived as Jean Tottie appeared, from TIDE, Toby, Suzy Webster, Diane and Maureen immediately appeared – I was only expecting George Rook! So a wonderful bonus.
They are all members of LEAP – Lived Experience Advisory Panel for Dementia UK.

They wanted to hear what we do and we wanted to hear what they do and how we can both work together to bring Admiral Nurses to our part of the country.

Suzy did an ice breaker with pretty cards. We had to choose a card from a table that appealed to us and then talk about why we picked it to people next to us.

I initially chose a bright sunflower but then Jean Tottie persuaded me to have this one…for some reason….🙄…..should have been an ipad…🤣

We all then went round and said who we were and whether we were from Minds and Voices or Dementia UK… there were 9 from them and 13 of us – marvellous 👍⭐

The picture cards were a very good ice breaker as the minute we’d chose our cards we were all relaxed and animated and chatty around our tables – wonderful

Suzy, went through the agreed ways of working in the meeting – no ground rules, as we like breaking rules too much.😂

There was a moment of panic when Elaine decided to pass out but all of Minds and Voices didn’t bat an eyelid, 😂, but the other people were reaching for their phones and 999 sprang to mind. Of course, we’re all use to it and knew Elaine just needed some fresh air…….🤣 bless….

It was then Rachel Thomson’s turn to talk to us about Admiral nurses and she started off with their wonderful film – Together Again

Eddie asked what the connection was with the Navy and Rachel told him the history of Admiral Nurses…..the Levy family set it up when nothing was there for them…..they have about 240 nurses around the country. Elaine was asking, why doesn’t anyone tell you about Admiral Nurses?

Everyone in Minds and Voices, especially the couples in the room were all the same in their thinking – how they would love to have an Admiral Nurse in their lives……

After lunch and a cuppa, we had 5 minutes from Toby saying what LEAP do and 5 minutes from Damian saying what Minds and Voices do.

LEAP have only been going for just over a year and it’s aim is to advise Dementia UK. There are 14 people with dementia and affected by dementia on the LEAP board. They want to hear our views as an established group of people with dementia – as a group LEAP have advised on Dementia UK website, on factsheets, on a survey, the media campaign of the film that we saw earlier.

Sadly I then had to go as my buses now don’t coincide properly for changes……which is a real bummer……as I missed the important bit of the roundtable discussion for how we can help.

It’s such a comforting service where you see the same person each time – and it’s such a shame there are none in York or my area……….Admiral nurses often help to avoid crises……not rocket science to see what a valuable resource they of the aims today is to find ways how we can work together to bring more pressures on the powers that be to see the common sense in the provision of Admiral nurses. After all, we have MacMillan Nurses are the norm for people with cancer, but once again people with dementia miss out…….☹️

One of the special moments of the day was when Jean Tottie from TIDE gave me a pressie….

Really must put this in a frame…😍

Another of my special moment of the day was finally managing to capture poppies in the field. I saw a field the other day and was disappointed not to have my phone to hand to snap its beauty but today I managed it, albeit only a few in the field but still a glorious sight. I like nothing more than seeing a field of poppies, not as common now as they used to be so always sheer delight.

Alzheimers Society Annual Conference Part 1……

After the wonderful day at Minds and Voices in the morning yesterday, I sadly had to leave them all at lunchtime to carry on having fun without me🙄. I had to head down to London for the Alzheimers Society 2 day Annual Conference. Travelling from York meant the train was direct and no stops…….☺ and I was being met at the station by research playmates, Barbara and Sandra. We were arriving the evening before ready for an early start on Tuesday.

The 3 Nations Dementia Working Group were opening the Conference with 45 minutes to set the scene, so I was excited about seeing everyone.

Anyway, the train was on time in York and we trundled down at full pelt. As I was getting up to get ready to get off the train, the woman who’d been sat opposite me asked if I needed any help. I said I was fine thank you and she shocked me by saying.
“I’m halfway through your book, you’re Wendy Mitchell aren’t you?”……😳 ………crikey, how lovely……..

I could see Barbara waiting at the gates as agreed and it turned out we’d been on the same train😮……Sandra joined us soon after. Me and Barbara couldn’t have set off on our own as we were relying on Sandra to know where she was going🤣

We found the hotel and immediately decided to have a cuppa, only to be joined by 2 other people followed by Prof Murna Downs from Bradford Uni……..but the day had taken its toll and all I wanted to do was chill in my room so I left them all to it……..

And so to the first day of the conference…..apparently 500 delegates were due there 😳

After the last hotel in London, which created a new tube stop on the map 😶 – this one was lovely and peaceful, just need to teach my eyeballs how to sleep again🤣.

I met everyone else down in reception to walk through the busy, crazy London streets to our venue for the 2 days – The Oval Cricket Ground. Some kind person walked with me as the volume of people and noise was overwhelming….

But we made it to the Oval

And then the chaos started, but people came up and said such lovely things and some simply to say hello which was wonderful. I finally saw the 3Nations stand in the corner and made my way to have hugs from all my playmates.

Broadcaster, Fiona Phillips introduced the day and went through the normal housekeeping stuff, and Kathryn Smith, Chief Operating Officer welcomed everyone to the conference before Fiona introduced us – we went on stage in 3 batches to do our bit so we could sit down with the mic.

Keith and Chris gave us a recap of the The Dementia Statements stating how 2 words were previously missing, ‘Rights’ and ‘We’…..
Chris went through the review process and started by saying ‘How everything is changing but nothing has changed”

It was next the turn of Joy, Tommy and Nigel and Nigel started off by talking to the audience about Human Rights.

Tommy ended by saying ‘I got a DNA test today and I was shocked to discover that death is hereditary in our family” Cracking Tommy🤣

It was then me Hilary and Keith (who was representing John who is ill) and we finished off by stating what people can now DO. Part of mine was:

“There comes a time in any campaign for change, when enough is enough. When words and good intentions become meaningless promises.”

And Keith and Hilary finished off our session perfectly …….

Before a much needed break it was the turn of Sir Simon Lovestone talking about BIG DATA…..using data we already have to accelerate drug discovery…..

Data from electronic records, especially as GPs move from paper to electronic storage. So much data that could help reach dementia. The data given to studies can be used again and again and again – why collect this all over again when it’s already there……..

Well, personally, I never imagine in a million years that data wouldn’t be re used………if patients have given consent, or opted out should they wish.

The good news he gave was the indications found in some research of finding drugs to protect against Alzheimers…..similar make up to drugs that already exist and adapting them……..that’s where I’ve always thought research should focus…….

So then it was a much needed cuppa tea time but first time for a photo with Fiona

I was due on our stall to sign books. So many kind people came up and said lovely things and many books were sold, for which I’m very grateful………..there were so many people that when I next looked up everyone else had gone to the break out sessions and I was due to be watching Young Dementia UK…….I did wander round for a while, but just couldn’t find the room…..☹️ so missed it. Instead I went to the quiet room and took piccies

Joy joined me eventually and then lunch arrived, so we were able to get in before the crowds arrived – perfect! Dr Jennifer Bute joined us along with Hilary, Tommy and Joyce. A lovely lunch of chatting before heading back to the hoards.

I then joined in the session introduced by Dawn Booker. PhD Students from the Doctoral training centres around the country, had 7 minutes each to take us through their study……wonderful to see enthusiasm as well as nerves in these amazing future leaders of research…… showed a slide that said:

When you stop taking risks, you stop living life” – wonderful😊

At the end all the students came on stage and I Was allowed to ask one question….

“If you were advising students starting out with their phd, what would you advise them to do or not do”

All of the wonderful students gave an answer and one that stuck in my mind was:

Talk to as many people with dementia as possible”…… you know why students are my favourite people, our hope for the future…..

Brain apathy had now set in as it’s been an overwhelming day………I’m sure the rest was wonderful…..but one thing that made me sit up and wake up was when Minister of State for Health and Care Caroline Dineage MP spoke…….and sadly they seemed just ‘words’ and promises…….she said all the right words in all the right order…….but I’ve heard the words before. Brownie point will only be gained when the words are turned into real ACTIONS………

No more typed words, so I guess my brain went on automatic and disengaged from my fingers…….Day 2 tomorrow……

My first evening event……….

After Wednesdays event at the Humber Conference, with a blip in my brain at 11am rather than the usual 2….I knew I might wake on Thursday morning with the banging head dementia throws at you……and sadly it didn’t prove me wrong….

It couldn’t have happened at a worse time as Thursday night, I was trying out my first ever evening event….🤦‍♀️😶🙈

But then dementia is like a cruel game and I’m sure it did this on purpose. I could hear its ghostly laugh……..Anyway, there was no point in taking 2 tablets as they send me away with the fairies and I fall asleep, so I just took one in the hope it would take the edge off the banging fuzzy head… that at least I’d only have dementia to cope with….

I was heading for Lancaster for a wonderful event at The Dukes Theatre in Lancaster. It’s a 2 day event entitled:

“Creative Adventures in Dementia – A Life more Ordinary Festival”

but I was just there on Thursday and leaving Friday morning. I’d been asked a while ago if I would take part in a conversation with the wonderful journalist Nicci Gerrard who also writes under the name of Nicci French with her husband Sean. She interviewed me at the time of my book release for the Observer and did a lovely piece and was soo kind. She is also the founder of John’s Campaign.

Also involved in the conversation would be John Middleton, whose character Ashley had dementia in the British soap Emmerdale, and Professor Sebastian Crutch, a neuropsychologist at the Dementia Institute who is conducting fascinating research called ‘Created out of Mind’…..

The fact that it was at 7pm was a tad worrying as I’d never done an evening event before but, even though I was travelling feeling groggy and with dementia in tow, it meant I might be able to get some shut eye in the afternoon.
The fact that I was on stage with others was also comforting but I knew Nicci was the perfect person to be interviewing as well.

Anyway it was a beautiful sunny morning when the taxi arrived and the town cows lifted my spirits as we trundled passed the Westwood…..

I didn’t want to mess up on the night as I’ve got the Hays Book Festival in a weeks time and that’s also in the evening so I was using this one as a trial run, but there’s no accounting for dementia putting a spanner in the works……..anyway…… last Thursday……

I’d given myself plenty of time to change at Manchester so was able to amble quietly instead of rush about and arrived at Lancaster at lunchtime. I’d printed off all my maps etc so was discombobulated but calm when I got to Lancaster at lunchtime.

Good job I was calm as I got my left and right properly muddled and turned the wrong way out of the station🙄……but when I got to the bottom of the hill I realised I was probably going the wrong way and retraced my steps……..and eventually found the hotel…..going through intensive refurbishment😳🙈 but the staff were very friendly.

I left my suitcase as I was too early to book in so had no choice but to go wander round Lancaster…..and straight opposite was the Castle…..also going through major renovation😶

I then tried to find the theatre but my left and right were totally at loggerheads with one another – never had that before……I obviously took a wrong turning and found the river, but at least I could see where I was on the map -ha! I was stood on the only bridge on the map

Anyway, I trundled along and eventually found the shops again and then the theatre by pure chance🙄 but I seemed to go round in circles, continually getting lost🙈

The time came when I could finally check in to my hotel…….I found it a strange place….certainly not dementia friendly……with a very old fashioned lift, that was beyond me – which was having bits painted so I couldn’t use it even if I’d wanted to and I was on the 4th floor🤯…..very strange layout altogether unless I just wasn’t in the mood today…….but once I found the equally strange room, with sloping floor😳 and strange smell of curry on the linen – I was going to ask to move rooms and wrote it down on my blog …but not until I had a lie down and closed my eyes………

THEN I woke up with a start at 5.10😳😳😳😳😳 – we had decided to all meet beforehand at 6pm🤯 I’d fallen asleep without setting any alarms😱 I staggered about the room – very small room, so must have looked like a Pinball bouncing off the walls and furniture ……..cuppa tea thought brought me to my senses……..and instead of a curry smell, there was the smell of fresh linen – strange the tricks dementia plays on you, but that’s a new one…….🙈…….

After gaining consciousness and a semblance of normality I made my way to the theatre….but again got completely lost….🤦‍♀️……but I asked a smiley face and she gave me instructions. She must have stood and watched me as a few minutes later a breathless woman came up behind me saying I was going the wrong way🤐 and turned me in the right direction again. A 2 minute walk turned into a 45 minute round the houses walk…..

I finally got there to be met by the lovely Nicky Taylor from the West Yorkshire Playhouse, who promptly sorted me out and took me to the lovely Gil Graystone who had done much of the organising.. I met John, who was already there, followed by a lovely hug from Nicci and then Sebastian joined us.

I have nothing typed as there was no point in taking my ipad, and the chaos of the walk was written in Notes on my phone to deep me calm, so the rest is all about feelings.
Well I can truly say, I felt I was with 3 wonderful, warm and kind people. We clicked as a group instantly. I could have sat and talked to them all evening. The event must have gone well as everyone said kind things – someone even highlighted the jokes I cracked😳 so goodness knows what I came out with😂

We finished at 9, which was crazily late for me, and everyone had a drink in the bar – obviously mine was of the tea variety – before heading back to the hotel, with a banging head as it was very noisy – note to self, I MUST GET MY EAR PLUGS SORTED!. I felt I was walking back with 3 people I’d known for ages. I felt safe in the dark shadowy world outside with them all at my side and John walked beside me, taking my arm when I wandered off piste. 🙄

Such a lovely experience, with wonderfully lovely people…….even if dementia tried to ruin it……but didn’t succeed……..😊

A Diagnosis is the Beginning of a Different Life…….

That was the title of the talk I gave on Wednesday at the Annual Humber NHS Foundation Trust Research Conference. The Conference was:
‘Developing a City of Research”

Always a nice change to do something local and I love working with my local research team, led by Cathryn Hart. Cathryn had asked me sometime last year I think!

After Tuesdays sunny weather, Wednesday was cool and cloudy. Alistair Burns was due to talk after me and the day before there had been last minute requests from the local TV company. Having me and Alistair in the same room was an ideal opportunity to talk about next weeks Dementia ACTION Week.

Anyway, Gemma was driving me there today and arrived as planned and we drove to a nearby venue……no taxi, no bus, no train required……..ahhhhhhhh

We arrived to be met by the lovely research assistants on the registration desk The amazing Alison – administrator extraordinaire……… immediately apologised as the hotel venue did NOT serve Yorkshire tea😱. In fact several people came up and apologised🤣 – obviously no brownie point for the hotel but one for all the apologies…….🤣😂🤣

Everyone started to arrive and the hall began filling up…….it was a sell out so the room was very full.

Lovely to see the cover is a painting done by someone on the Journeying Through Dementia Study

Chief Exec Michele Moran opened the conference…..she gave important detail, like the hashtag for twitter:) and the fact that it’s the NHS’s 70th birthday in July. She spoke of the raffle that’s going on throughout the day to win my book! And all proceeds are going to the Humber’s charity, Health Stars……

I started off the conference and had 25 minutes where I said amongst other things…….

The day before I was diagnosed, I was working full time in the NHS, the day after being diagnosed I was working full time in the NHS.
Nothing changes overnight, so why are we made to feel by so many that it’s the end?”

I finished by reading a couple of extracts from my book

After me was Alistair Burns on the “Challenges and Opportunites of dementia…..”

He spoke of dementia being the most feared illness in people over 50 and how dementia rarely travels alone with people having another long term condition; When you’ve met one person with dementia, you’ve met one person with dementia and it affects people in different ways……..

It was sad that everything Alistair said was very familiar so I must have heard him say it before………shame there was nothing new and no ACTIONs just words…… he spoke of ‘supporting Clinical Commissioning Groups’ but it always appears that CCGs are under no obligation to follow best practice……he showed a slide on Post Diagnostic Support available from NHS England……..

Guidance on what support should be available’……….just words……

……..simply words……no ACTIONS spoken of at ground level…….

At the Q&A bit, I said how next week was known as ‘Dementia Awareness week’ and is now ‘Dementia ACTION week’ as we’ve heard so many words and had so many promises, but next week is the time to turn words into ACTIONS……….no response from Alistair……

Before a tea break it was the turn of Professor Joanne Reeve from Hull York Medical School on the ‘Quiet Revolution – Reimaging Primary Care……’ moving away from the medical model and working towards Continuous, Comprehensive, Coordinated Accessible Care………Recognising health as a resource for daily living…………Person centred care in primary care is in decline but at the new academy of Primary Care – they are focusing on person centred prescribing,

A wonderfully refreshing talk – huge brownie point for Prof Joanne……….implementing new ways of working..changing practice through research in practice. What’s happening on the ground doesn’t often reflect guidelines…….developing and amending implementation as it’s being done on the ground requires a shift from evidence based practise to implementing evidence as it’s happening. She gave a wonderful quote around this but I wasn’t quick enough to type it down….🙄

Such a great talk….

Time for a cuppa……but before I could get one I was whisked away to do a quick interview with the local ITV Calendar, but someone made sure a cuppa followed……..🤯…..In the interview I spoke about next week being Dementia ACTION week and about our course in York not taking any clinicians off the floor …….designed by and delivered by the people who can help newly diagnosed the most – people with dementia…… we need something similar in the East Riding…..

We spoke for a while so it’ll be interesting to see which snippet they use……

I was taken back to the room with a second cuppa…….

I felt a tad discombobulated from all the too-ing and fro-ing so seemed to switch off as I havn’t typed anything. Usually this happens around 2pm but it was only 11am😳– maybe I was just drinking my tea during the next speakers before I left or maybe I just wanted to sit………

Cathryn ended the morning session by showing a celebration film of all that the research team had achieved in the last year…….I did have to listen with my fingers in my ears though as it was very loud but it was wonderful to watch and nice to see some familiar faces, including my own! But more so, to see Colin and his wife talking – Colin is a dear friend who I havn’t seen for ages so it was lovely to see him speaking……

Before I left, I got a lovely bouquet of flowers and pressie from Cathryn Hart……..

Always good to see local teams celebrating local achievements……

A Course delivered by people with dementia…..

Yesterday was day 1 of the our ‘Good Life with Dementia’Course in York, created by people with dementia, run by people with dementia, for people with dementia (supported lots by Damian)……….It’s been a long time coming as the local mental Health Team have been less than helpful to say the least, in fact disappointingly so, as they are the ones who diagnose and could easily signpost people in our direction………but for some reason they felt it not worth the effort or appropriate ……..🤦‍♀️

Anyway……..we were determined that the course was going ahead no matter what and Damian has worked so hard with others to find us a few people to start with. Hopefully, then the mental health team will see what a wonderful opportunity they missed. It’s even being properly assessed to prove if it’s beneficial. So anyway, let’s just see. Me and my playmates at Minds and Voices were thrilled to be involved and 3 of us were attending each of the 6 sessions so we didn’t frighten the people to death with our banter………..🤣

The day began with an early taxi ride into town to catch the silly o’clock bus to York. I wasn’t hoping for much of a nice day as the weather had already said it was going to be a wash out………🙈 and it didn’t disappoint as the rain was heaving down as the taxi pulled up. But I had a lovely smiley cheerful driver who chatted happily on the short journey into town.

The bus was on time and instead of going upstairs, where the windows would be rainy and steamed up, I sat by the driver and had his windscreen wipers to clear my view – ooooo and his view as well!

The driver even went round a puddle at one point to avoid turning a pedestrians day into a worse day as he walked at the side of an enormous puddle in the road…..#smallrandomactof kindness…..

Talks started in May 2017 with the local mental health team. There was so much lethargy and the Doctor in question had referred to already ‘only having an hour to cover LPA, driving issues, support for carers , and of course ‘breaking the bad news’………Aaaaargh!!!!!! If all that is thrown at people when ‘breaking the bad news’, then why is it any wonder that people sink into depression …….I feel like screaming that so little is understood by these so called ‘experts’ that people find themselves in the care of……

We cover all that from a practical and realistic point of view in our 6 week course in a relaxed atmosphere with time to ask questions, with time to ask people already living with dementia ……..

Our course isn’t under minding the medical diagnosis. It’s giving people a comfort blanket for however long they want after being discharged by the medical profession. I wish such a course had been available when I was diagnosed as it wasn’t until I found Minds and Voices that stopped feeling alone and abandoned…….

I was recently helping to deliver a session talking to clinical staff and it became apparent that when clinicians hear the word ‘refer’, they interpret the word differently….They take responsibility for that ‘referral’ and if something goes wrong, they think they could be liable and think of complaints and backlash.
Instead ‘signpost’ offers no such trepidation……it relinquishes them from all responsibility….

I’m not excusing the mental health team whatsoever, but maybe that thought was running through their heads….

We have two referrals from Dementia forward and one from the ‘Journey through dementia’ research project. They are not exactly recently diagnosed but hopefully will still benefit from the programme and the positive message – and the fun! Another two are also joining the course. So 5 people altogether

No-one yet from the mental health team…………….shame on them……..

Anyway, Damian picked me up in the pouring rain and we arrived and set up everything, me being in charge of the tea……..and Damian putting the poster up.

We decided the first session should be just chatting so that people could have a chance to relax and settle so a very chilled agenda.

First student to arrive was Barbara, followed by Peter, one of the ‘Tutors’…………followed by students Eileen and husband Leslie,who was a University lecturer, Ken and wife Margaret, followed quickly by Elisabeth who is the trainee clinical psychologist evaluating the course.

2 other people, Clive and Tony, are also joining the course in a couple of weeks.

We started off by introducing each other and then Damian started by saying how the course came about.
Peter said “a diagnosis is the start of something new”

The newbies then told us their story. We had a former dance tutor, lecturer and retailer in a shop I used to live near in York!

We spoke about good days and bad days…..Leslie said, “every day is a good day as it’s another day I’m here………” His wife asked how she should get Leslie to accept he forgets and Leslie immediately became defensive saying he never forgets…….We highlighted that family dynamics and the issues that may arise will be covered in one of the sessions on Living alone versus being in a couple.

Kenneth started talking about research and asking about the research out there and how he’s changed his diet……….we told him Clive from Join Dementia Research would be here in the Market Place session allowing him to join up to JDR if he was interested. I said I’d been involved in lots of research.

We talked of the difference between factual and emotional memory.

Leslie recited a poem from GK Chesterton out of the blue and then Barbara recited a poem she wrote at school, showing how our long term memory is so much better than our short term…..

We spoke about relationship adapting and accepting, driving and fear……so much of what they chatted about, we’ve included in our course, which was very comforting…….all their fears have been our fears …..

During a cuppa break I chatted to Eileen and Leslie and it turned out me and Eileen had been in the same Halls of Residence at Coventry College😳, just in a different decade….. and Ken and Margaret lived near where I used to live in York😳 small world syndrome at large again………

After a cuppa, the 3 of us from Minds and Voices told our stories to finish off, which brought out more fascinating stories of time gone by in York…………….we ended with saying how being with other people with dementia made you feel less alone, we don’t judge each other and so what if we forget things, we’re they’re for one another………….
This is why we put this course together in a non judgemental envirnment………

Damian finished off by asking each person what they felt about how the first session had gone …….
Leslie said he will bring another poem next week….so we’ll call him our ‘resident poet’
Kenneth said he’d learnt so much……….
And finally, Barbara said she felt much happier now as she’d been depressed before….

It was a wonderful start to our course…………..obviously we couldn’t do it without Damian, but what better course to have for people with dementia than one put together and delivered by people with dementia…………

I’d decided before everyone arrived that I wouldn’t take photos today as I didn’t want to frighten everyone away, but Damian dropped me off at the station and I couldn’t resist taking one final piccie of the daffodils by the walls

Final Saga of my time in London…#3NDWG……

Some people said, after reading yesterday’s blogs – ‘You shouldn’t have gone”…….but I didn’t have the luxury of making a choice. I wasn’t capable because the fog had rendered me incapable of thinking; I had to go with what was planned. That’s what dementia does to me on bad days – it takes away the ability to think. When I’m not doing anything I can do nothing but curl up under the duvet, but when it comes on event days, I can’t think ‘what should I do’. I simply have to go with the order of play…….

I’d never had a foggy day last 2 days before so was really hoping I’d wake up and it wouldn’t be a hat trick……..
As usual, I had my night of ‘sleep, wake, sleep, wake’ and for the first half was disappointed that Mr Dementia was still in tow. Then in the early hours I woke…..I sat….I opened my eyes in the darkness…….and he was gone. I breathed a huge sigh of relief and happily sunk back into the covers – the fog had lifted and the throbbing pain in my head had gone.

I finally woke yesterday morning and went through my normal routine and then began to start this blog. I’d just checked through thinking that I had yesterdays blog to sort when to my astonishment I found I’d already typed two blogs😳…..I didn’t remember doing them. 🤐……thank goodness my fingers can type without the need for my brain to be engaged, but how weird. I sat for a few moments reading through them and yes, they were my words, they sounded like me…..
Nothing surprises me about dementia anymore but my typing fingers really excelled themselves this time……

I just want to say a huge thank you to Jayne, Joyce and Rosemary. They are my hung sung heroes, but may not even know it. I don’t remember their actions, but I’d typed them. During my foggy day they silently sorted me, got my cuppas, sorted my coat….all without fuss. In fact they probably didn’t even realise how valuable they were to me that day. My unsung heroes – thank you😘

Anyway, back to yesterday. We all met in the hotel lobby and a few went in a taxi with the luggage and the rest of us walked. Needless to say the walkers got there waaaay before the taxi.🤣 We were in a nice venue a few minutes walk from the hotel.

We started off the meeting with reviewing the final actions from the last meeting…….I brought up the sham of the consultation on the Health and Socail Green Paper and it turned out the London meeting was just as bad…….I said I didn’t want to see the sentence:

We consulted with people with dementia”

in the report as they clearly ticked a box…..the problem, as always with the Department of Health is that people are shuffled around posts, new people come in and have to learn from scratch making the same mistakes as their predecessors, instead of having best practice passed down to them……

We then asked why the Alzheimers society doesn’t have a presence on the High Street…..we all said a presence would make people more likely engage with the society……we weren’t talking about a charity shop – we’re talking about pop up information shops to make the Society appear more friendly and approachable………..all in favour…🤚

We went onto talking about how we were going to get other people with dementia to become a wider member of the 3 Nations Dementia Working Group. Hannah presented a great presentation on the options available to us.

Nigel referred to a comment by the wonderful Barack Obama…..

“Never underestimate the Power of One Voice”

We want to offer the wider group the chance to learn, influence, share their experiences and be involved, in whatever way they want. Some may simply want to be armchair members, which is fine.

Since we are critical friends of the Alzheimers Society, Adele then gave us an update on Dementia Voice.

This was the new team created by the Alzheimers Society last September of which she is the Head. It’s aim is to make sure engagement was everyone’s responsibility – every team to engage people affected by dementia. To include people affected by dementia at all stages of their work across all services.
It has to come naturally and be like an intravenous drip………👍

It has to work nationally regionally and locally – all have to work consistently. The intravenous drip has to be natural. So the culture has to be embedded throughout the Society.

They want to reach out to more people and reach out virtually to include people who can’t physically attend a get together or meeting.

They are not using the term co-production anymore…..instead they are using ‘Working Together’

Adele has lots of exciting plans in the pipeline for her team of Dementia Voice over the next 5 years….hopefully at the end of 5 years the culture will have change yo encompass all her ideas.

We were all flagging as the agenda had gone through the window due to ‘circumstances beyond our control’……🙄 so time for lunch…..

We then got carried away chatting and forgot to go back at the set time🙄…….so then switched round the agenda to make sure we got the important stuff sorted …..

We reflected on the guidance notes we should give to internal and outside speakers.

Also an exciting thought that maybe Belfast will be the venue for our September meeting.

We then moved onto about the content of the first Newsletter we want to produce. Loads of ideas to instantly attract people to read and consider joining the 3 Nations Dementia Working way in whatever way they want.

The typing then seems to have stopped…….loads of good stuff explored and discussed and a very tired bunch sat round the table. Joy finished off with a little pressie for everyone..

And this wonderful beast doing his rounds of Kings Cross

I’d forgotten there was a train strike by Northern Rail so knew there was a long wait ahead of me in Doncaster as no Northern trains to take me home 🙄 – just one Virgin train that would take everyone home for Easter🤦‍♀️

Hoping the fog will clear…..

So following on from the earlier blog, back to the day itself. The first train was on time and I just managed, after several clicks, to get a lovely morning sky.

It was the silly o’clock train and the second train was late due to trespassers on the line🙄 but we set off and I typed, trying to get my brain working. All I can say is, thank goodness for autocorrect…….🤦‍♀️

I was heading to London to the Alzheimers Society offices at Tower Hill for the first day of our meeting. We have a new administrator, Hannah, who has settled in marvellously and is wonderfully organised and sends me all the paperwork just how I like it. I always read the paperwork on the journey as to read before would be pointless and even reading it on the train is only a little better but at least something usually stays in my head.

But today I took the paperwork out and read the words but they vanished the moment each word went by. I could sense my contribution to this meeting was going to be all but non existent if my brain didn’t decide to join me for the duration…

I desperately tried playing solitaire, anything that might help but it was no good, dementia was winning today and laughing in my face. I gave up. Closed my eyes and let the journey carry on without me. I thanked the female staff for her smiley face – I needed that this morning. The same smiley staff came along as we pulled into the station and said….”I’ll take your case” – one random act of kindness that helped so much….

Many had arrived the night before but I’m glad I chose to travel in the morning as last night wouldn’t have been a good night to be in a strange room.

I arrived at the hotel to leave my bag to find everyone in reception. I was feeling a tad overwhelmed but Jane took control and sorted me out. We walked over and had hugs and a catch up.

I sat, not quite knowing what to do with myself…..Jayne and Joyce must have noticed my predicament and sorted me out with a cuppa…
Keith had kindly brought me the Woman’s Weekly magazine from Australia which had done a 4 page piece on my book

Tommy Dunne from Liverpool and John O’Doherty said a few words as they are new to the group. Tommy’s first words were that he was now part of a ‘wow’ group that can make change happen, which was lovely.

Hilary chaired the meeting and Shelagh was vice along with Joy.

We were then joined by Gavin, Alison and Rachel from the Society to hear an update about the Rights work and our part in the Annual Conference in May.

Alison went through the conference. We’re opening the conference and have a 45 Minute session. We went through the whole programme to give us a heads up of what’s happening. Fiona Phillips and Tania Bryer are hosting the events over the 2 days.

We made our comments on the content and were happy that they were listened to.

We expect a max of 500 people each day, which is wonderful.

Gavin spoke about the theme of the conference. It’s not being called Dementia Awareness week but Dementia Action week. Our voices will set the scene around what actions we want to see.
Rachel and Keith then spoke about our session – we want it to revolve around the Dementia Statements and our Rights. Sounds quite dry but I’m sure with imagination, we can make it punchy and memorable.

John wanted a statement to retort to the comment we have all received at some point:

‘You don’t look like you’ve got dementia’

Tommy came up with:

‘You don’t look stupid’ 👍🤣😂🤣😂🤣

If any of those people who had said that to me had met me today, maybe they would have changed their mind…..

Rachel talked about Rights – how we need to make all the statements relatable to everyone in the audience.

Ideas were flowing and so many good ideas came out about what we wanted to do to wow the audience in the opening session.

After lunch it was piccie time

Must never forget those who support…….

Followed by our first speaker David Truswell from Dementia Alliance for Culture and Ethnicity (DACE)…..There’s a long history of discrimination against ethics groups accessing services and even more so for those with dementia.
“Professional assumptions about lifestyle and caregiving cultural norms of black and minority ethnic communities may inhibit help giving behaviour”
Diagnostic tools are in question about their relevance and appropriateness to black and minority ethnic communities. Language and questions in general are often inappropriate, leading to apprehension from those needing help asking for it.

Interesting comment by David for researchers to be take note of….Most of our brain research is carried out on white European brains – clinical researchers need to ask why….

Sadly I’d had enough and stopped listening…………I might even have gone to sleep as the lights were turned down………

I couldn’t concentrate after this so sadly no more notes for today….think I’d done pretty well considering. I was with friends; no judgments made………now to snuggle and hibernate in my room for the evening and hope tomorrow is a better day…….