Category Archives: Research

New staff, new beginnings……..

Yesterday saw my monthly trundle to Humber NHS Trust to speak to new staff on their very first day. I was doing a double act with Sarah from the lovely Humber Research Team. You never know how many new starters there will be each month, so always a surprise.

It had been stormy overnight but thankfully dry as I opened my curtains, the sky still overcast and gloomy bit with a promise of a better day to come…. Sarah was picking me up at 9am as we’re always second on after Chief Exec, Michele Moran.

So, right on time the little blue mini picked me up and we trundled to Trust headquarters, catching up on recent goings on before finally arriving and saying hello to all the other stars in the office.

In no time at all it was time to make our way across to the lecture theatre where the newbies would be waiting. Time for a quick selfie ☺️

It’s always nerve wracking starting a new job and Induction days can be a tad weary. Because we’re second on, they often havn’t had time to relax and get to know one another so it’s a bit pot luck how we’re received…….but Michelle and Sharon finished their slot and after hellos and a quick chat, we went into a packed room…..

Sarah started off by giving her presentation. She went off piste this time as the updated slides hadn’t been loaded, which could have thrown her. Instead I think it went better as she explained things more and didn’t just read what was on the slides, which always seems a tad strange to me.

The audience was full of a mixture of newbies, but all are equally important because if it becomes natural to talk about research it will become more natural to take part…….
Humber also make it very easy to refer people for the team so no excuses! Simply by having us there is a bonus as research often isn’t on Trusts Induction agendas.

Finally it was me to finish off. Amongst other things I said:

Imagine the impact on your well being – finally hearing someone acknowledging that you still had something to give; that you still had an valuable opinion and views that mattered.
That’s what happened to me when I started to be involved in research.”

And in the blink of an eye, we were finished and the next speaker would be arriving. I often wonder how much they remember of these Induction Days……..maybe a simple exercise at the end of the morning and again at the end of the day would help them take in more……or am I being cruel 😂

IDEAL 2……..a project that will provide history….

Yesterday I had a visit from one of the stars of Humber Research Team, Emma.

I took part in IDEAL 1 a year or so ago……and now they have funding for a further 3 or so years.
The study is being run by Linda Claire Exeter University and funded by the Alzheimers Society. I’ll be seen another 2 visits over the next 2 years. The study is looking at lifestyle, mood, hobbies and general thinking about your life.

The second part of the study is specifically trying to find people who are less well represented…..under 65, over 90 and people with rarer types of dementia

So if anyone in the Humber area is interested please feel free to call the lovely friendly team on 01482 301726 or email:

HNF-TR.esearchTeam@nhs.net

The visit lasts about 2 hours but can be split into two if that’s too long…..

The usual consent form was completed. I saw the Leeds and York team for the first phase but now I’ve been transferred to Humber……😊

There’s a new bit this year on Data Linkage where they want to collect data regarding Gp and hospital visits and other healthcare professionals. This is collected by a neutral party and sent to Exeter. But no problem saying no to this bit, but I think It’s a great idea to get more in depth, richer information.

The ubiquitous MMSE test was first – stupid 3 words…never remember them….

We skipped our way through the questions…..Emma kept asking if I wanted a break but I just like to finish once started. And we’d find it hard to find another convenient date…..

I was really surprised that they started some of their questions with “In the last year…’ or 3 months or 2 weeks……..🙄…..it’s hard for someone to remember detail when they have a good memory so was impossible for me, so all I do is immediately think of today…..or guess…. or say I don’t know……

one very funny question was “do you use social media?”…….mmmmmm 🤣😂

‘Peer support group’ wasn’t on the list for groups attending, which I found sad. I think they missed a trick here as it would have made valuable data to ask whether people had met others in the same situation and whether it had had any impact.

I was finally asked what I think of the phrase ‘living well’……what does it mean to you’?…

Well I’m sure I’ve said before that I no longer use the phrase as it sets some people up to think they’ve failed, especially when struggling. ‘Living as best as your circumstances allow’, or something similar, gives people an achievable goal.
It was fine in the days when there was nothing else apart from ‘suffering from dementia’. But I’ve had so many emails from people saying they can’t live well and feel a failure that I simply no longer use it.

Such a good project to take part in if you’re able as the outcomes, gained over so many years, will make such interesting reading ……

Lovely to see Emma and her smiley face…..

See her again in a years time, although I’m sure I’ll see her lots before then….

I’m sure it’s being carried out in many other areas so signing up to Join Dementia Research may be the best avenue….

https://www.joindementiaresearch.nihr.ac.uk/

or check out their own web site:

http://www.idealproject.org.uk/

Children without a Voice…….re blog

For the next few weeks, as summer quietness begins, I thought I’d take the opportunity to reproduce some old blogs every now and then. This one is from January 2016 (amazingly!). Professor Pat has since become a wonderful friend and Dr Mel is a lovely Twitter Pal. Dementia has allowed me to meet some wonderful people who I would never have met in any other circumstances and these are just 2…….

 

Yesterday I went to Sheffield University as part of my research monitoring role with the Alzheimers society. Projects that are funded by the society are monitored to ensure money is spent as it was intended but more importantly to hear all about the wonderful work and issues encountered by the researchers themselves.

As many of you know, research is a passion of mine and many researchers have become good friends over the last year. Their enthusiasm and passion gives me hope for the future.

Yesterday’s project at Sheffield is headed by Professor Pat Sikes and Dr Mel Hall. They are looking into the experience of children when a parent is diagnosed with dementia. I last visited in early summer last year so was keen to hear how it was progressing.

By the by, Professor Pat and I share a passion for our cats. In my case Billy and in her case, Neville……..what tales they could tell if only they could get together and have a chat!

Billy
Billy
And Neville.....
And Neville…..

Back to yesterday……the day started off very damp, dull and grey but at least my train was on time and at least it was a direct train! Since I moved, I’ve been having problems with journeys where I have to change as the routes are new and unfamiliar, which didn’t use to bother me but now appear to be an issue. It’s made me less confident when travelling which is a very new experience for someone who always use to travel here there and everywhere quite happily. Hopefully the anxieties will pass……..

I’d printed off a picture of my destination and had instruction from Pat as to where I was heading when I got there. Last time I had playmates in the form of 2 fellow monitors, June and Louise, but neither could make this meeting so I was on my own.

Anyone with an interest in finding out how research happens can become a research monitor with the Alzheimers society. To share and listen to the passion, trials and tribulations and offer encouragement is such a wonderful experience. You can give as little or as much time as you have available. We need far more people to help, especially those with dementia. More details can be found at:

https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1109

The taxi got me there fine – the picture I had with me even helped the taxi driver! I went up to Pat’s office to find her beavering away. Once Mel had arrived and supplied us with tea, they began to fill me in about the project.

They’re now in their second year and have participants ranging from 8 – 31 (the older people were able to give retrospective feedback of their experience since childhood)

They’d written several papers about the project.It was sad to hear that some were turned down due to the lack of findings. How lacking in foresight – the ‘story’ of the project would be rich in detail and would make interesting reading.

Mel had written a paper on how to maintain relationships when a parent has dementia. I was amazed at the children’s resourcefulness. For example one young guy asked his mum to make him a cuppa each evening. Many people would see this as selfishness but the young man did this because it was the one thing his mum could still do which showed she was still his mum – magic.

Pat wrote a paper she described as controversial. There is much talk of people with dementia ‘still being the same person’. The young people were challenging this concept – ‘if they were the same person they wouldn’t be behaving like this’. Not everyone can live well with dementia and often their loved ones can’t either. There was much ‘grimness’ in the words the children spoke.

My reaction to this was that of course there would be grimness. Life isn’t always as we would wish. In their young lives they were being ‘robbed’ of the very people who were suppose to look out for them in life.

Their identity as a son or daughter has been lost as they’re now doing the parenting.

They were grieving for what they won’t have in the future. They were sorrowful at the thought of not having their parent at their graduation, their wedding and not being a grandparent to their children. Youngsters often have an idealistic fairy tale view of the future which makes all these issues seem even more important. There may be unresolved family issues from the past. When a parent has terminal cancer, these issues can be resolved and addressed; when a parent has dementia this is no longer possible. They need to know it’s ok to be angry, sad, and simply OK to have the thoughts they do…..

We mustn’t hide this reality of their situation just because it doesn’t fit in with the current view of ‘living well with dementia’.My belief is that not everyone does live well, but with support and guidance we can teach people how to live as well as possible. Not everyone is capable of thinking up strategies alone; they need support. Whilst I always advocate the ‘positives’, I also acknowledge that there are those who find positive thinking a challenge. They may always have been like this with or without dementia.
It goes back to my usual rant of ‘no-one gives you a handbook’. When a person gets a diagnosis of dementia, the whole family gets the diagnosis and needs help and support. What happens to the children if the partner of the person can’t handle the diagnosis? – it must affect the whole family. Adults find the concept of needing ‘training’ on how to look after a loved one with dementia difficult to accept,  so how hard must it be for children to understand the concept that their mum or dad is no longer capable of ‘looking after them’ as a mum and dad. We mustn’t ‘hide’ their difficulty simply because we’re trying to promote living positively. What we must encourage and promote is the children’s resourcefulness – just like the young man who wanted his mum to make him a cuppa, because she still could………

Pat and Mel told me they’d presented a couple of papers in Toronto at an International qualitative health research conference. They’d been put in the ‘older person’ section – simply because the organisers had seen the word ‘dementia’ and made the usual assumptions. However, this did mean they had a different audience who were moved to tears at the stories they told about their young participants.

They are looking into trying to get more publicity for their project and the Alzheimers society is helping with some strands of this. They have turned down some offers simply because the newspapers have been after ‘sensationalism’ and this would be doing the youngsters a disservice. For instance the difficulty the gay participant has every time he sees his mum as she forgets he’s gay….. Jim Reed, who made the BBC film I contributed to last year would be the perfect collaborator to highlight the issue of the children. I know he would deal with it sympathetically.

The stats say that one fifth of those diagnosed with dementia are those with young onset – that’s over 42,000 people who may or may not have children. Very little support is given at all to adults, so imagine what it must be like for children. How on earth do they make sense of it all. In their young lives they may not have seen the real character of their parents yet – we don’t as children – so how can they make sense of changing behaviour, which to them seems plain wrong?
They’re hoping to get a spot on a Radio 1 question programme and this may help to get to more young people and show them that there are people out there who will listen. More services are needed for this vulnerable group. Just like adults need peer support, so do children. They can be helped to deal with their feelings and to understand them.The experience they’re having could affect their whole life and be damaging the quality and experience of their future years.

They spoke of their plans for dissemination and are organising a conference to launch the project in July with some of the young participants telling their stories – I’d love an invite (hint hint!)
The last time I saw them they were starting to look at producing an animation to help children. Well they’ve now put in a bid  with the Welcomme foundation for funding. They find out in February whether they’ve been successful. Everything’s crossed……

Behaviours are manifested before diagnosis. Children must be given the OK to express their views. Children’s voices have often gone unheard in the world of research and this project is giving them a voice.These issues loom large in their world. There has to be some way of saying to them, ‘ you’re not weird, you’re ok and the thoughts and feeling you’re having are normal reactions’.

To say that Professor Pat and Dr Mel are committed is an understatement. Pat herself said:

‘I can’t think that I’ve done anything as important as this’

Let’s hope we can find a way of getting them more publicity for this worthwhile project that’s affecting so many in silence……..If I hadn’t been diagnosed with dementia I wouldn’t have been lucky enough to have met such wonderful people as Pat and Mel – so every cloud…………

Can’t believe I didn’t take a photo of the 3 of us! But here’s Pat and Mel for the record……

Prof Pat
Prof Pat
Dr Mel
Dr Mel

Communication Workshop……..

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

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

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

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

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

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

“Is it grumpy Friday?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Emotional engagement is made easier through nuggets of story telling.

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

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

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

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

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

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

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

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

Are we Obliged, Willing and Prepared to Care?

It’s always so wonderful when you see a study come to an end and see the results. I’ve been an Alzheimer’s Society Research Monitor on Dr Sahdia Parveen’s ‘Caregiving HOPE Study’, at Bradford University from the start. Today we were their to discuss the results as this part of the study – step one – comes to a close. I say, ‘a close’, but really it’s the start of a new chapter, as the finding could make a difference for many people and the next phase will start.

It was an afternoon meeting so a mid morning start, which felt very weird 😂……I was at a loss what to do for 4hrs as I was still up at silly o’clock 🙄….but at least a nice sky view from my back window…

Anyway, taxi arrived, train arrived followed by train number two at Hull and we trundled on time along the Humber

The other two monitors on this project are Sandra and Htay….we don’t see one another that often so it’s always nice to catch up.

Anyway I arrived at Bradford to find Sandra sat in the café and 3 of our phd students getting a cuppa and Sahdia came and said hello before she went to set up the room.

We trundled upstairs, meeting Htay on the way and chatted happily before the few others arrived

There were quite a few apologies. Time of year, summer and end of uni year maybe …….

Sahdia briefly went through the summary of results. They smashed their recruitment numbers. Not surprisingly South Asian carers did feel more culturally obligated to provide care however, white British were more willing to provide emotional and nursing care.

There was a high percentage of carers who had clinical levels of anxiety and depression. South Asians had higher levels of burden and depression

Because they recruited such a high number it didn’t matter that they had a large drop out as they were still well within their target number. The main cause in the drop in numbers was many moved into residential care and they’d had to exclude them.

Val joined us by Skype and Ripaljeet arrived. Havn’t seen her for aaaages….so lovely to see her.

The outcomes were so interesting and not what you would expect in some circumstances.

Key message was we need to increase preparedness to care…….for both current and future carers.

The second study was on those not currently caring. What would enable them to feel more prepared to care for a relative with dementia in the future. They smashed recruitment in this too. The findings matched the findings of the carers study. Age differences were very interesting. The south Asian older people wanted to go in a care home because they thought they’d get better care, whereas white British didn’t want to go in a care home.

Today we were also there to discuss hosting an event in October as we’d been successful in getting a dissemination grant from the Alzheimer’s Society.

We’re aiming the event at carers but also some health and social care professionals as well. We can have 80 people as that’s what the funding allows. Sahdia aims to ask, ‘What would help them feel prepared to care’, ready for the start of the next phase of her work ………Caregiving Prep….

We’d speak about why we got involved. The participants all provided wonderful photos that we could make use of in a display.

Sahdia gave us all a gift of the book from the study that’s been published and amazing bits she’d hand made.

A great study with fascinating findings with fabulous people …….

Looking at our Good Life with Dementia Course……

On Friday I was in York. Me and playmate Howard were meeting with Damian, Chris Clarke from Hull University and Mark Wilberforce fromYork Uni, to discuss the the course of Minds & Voices. Our amazing course which people with dementia designed and deliver with our abler enabler, Damian. We actually start our next course on July 30th for anyone affected by dementia in the York and surrounding areas (if you would be interested to here more, please contact me or Damian on

dementiafriendly@outlook.com or telephone 07927 405854

Anyway, back to Friday. We have to find a way of proving our course works to convince those with the money to refer people to our wonderful course……..
The day started off well as my ipad was still working – phew! me thinks another blog is in the pipeline about technology…….

It was overcast and cool as the taxi driver pulled up but apparently a mini heatwave was about to hit us, so what to wear!🤔

Once I got to the station the usual signs greeted me……’Train Delayed’…..🙈……then I caught sight of the reason…..”Due to a fault on the train” 😳 …..so 15 minutes later when it trundled into the station, it did make me wonder whether the driver had simply taken a hammer to the offending part….and more importantly, which part…..🙄

The train to York from Hull, was on time but ipad momentarily died, but thankfully the quick fix of a ‘hard restart’ worked first time. As we trundled passed the Humber, the heatwave definitely wasn’t on the horizon……

Once in York I made my way to the Priory Street centre. I saw Howard in the distance with his headphones on and realised he wouldn’t hear me, so tried to catch him up but it was never going to happen…..😂 after a hug and hellos, we made our way in to find Damian and Chris waiting for us with a cuppa weak black tea…🙄

Once Mark arrived, Chris welcomed us and did the usual housekeeping. Chris is an NHS clinical psychologist and university lecturer at Hull.

We also had Keisha, who is Chris’s assistant, to take notes.

We had a few hours together to plan a way forward for our piece of research.

There were a few absent, Prof Esme Moniz-Cook from Hull, Dr Mark Mark Pearson from Hull/York Medical school, a researcher in palliative care and an expert on designing projects, and Sarah Daniel from the Research and Development Team with Tees, Esk, Wear Valleys NHS Trust. They’re also on the team but couldn’t make it this time.

We don’t want to undermine the scientific integrate of our research, but we want to keep it simple. So our proposal will need to meet the needs of what the reviewers are looking for but we want to make it plain that we want to make this research accessible.

We went through the funding options and spoke about what they like to see and hear.
We said how our course could offer the medical world something to offer as a pathway. The NHS don’t offer much post diagnosis, so if we could get it through NHS ethics, it would give them the proof they need.

We had sooo many good ideas, our heads were buzzing……and that was just concerned with how we would frame our proposal and the timeline……

Me and Howard would be co-applicants and Chris and Esme would be the lead applicants. We would have collaborators who would help us at certain points in time.

We had a interesting discussion around capacity and our capability to be collaborators.

Tea break and the conversation still continued about social care and costs……..

Chris recapped on what we’d talked about pre tea……very useful as it had already disappeared from me.

Howard gave the brilliant suggestion of audio version of reports. Because the timeline is so long, mine and Howards ability will change so our continuing involvement needs to be supported.

Chris and Damian did go to North Shields to meet ‘Making Waves’ with Dr Sarah Mitchell –(very confusing for me as that’s also my daughters name!!)…….we did tell them off for going without me and Howard…..but they acknowledged we should have been asked.

They’re a new group….one lady shared her impact of a diagnosis. She said:

“I went from normal to ‘old lady’…….”

It emphasised the need to tailor each course to the group delivering it……

Howard had the great idea of being handed a prescription at diagnosis, of the Good Life course – if you’re given a prescription, you’re more likely to go……..the true meaning of social prescribing…….

I said our biggest challenge were the practicalities of getting clinician to refer or ‘signpost’ to the course. As the course will be no good without participants. We have to get the buy in of the local clinicians to make the course work.

I said we needed to invite one of the clinicians in the area to support the course so they can see it’s benefit which will more likely lead them to refer. Clinicians have a reluctance to ‘refer’ as they have this belief that they can be sued if it doesn’t work……they’ve told me they prefer to ‘signpost’ so they’re not liable. A sad reflection of the world we live in……

Lunch time…

Peer led work can have implications for all health conditions…….we’re trying to understand more how our course model works and could be implemented anywhere.

Our course benefits both the people leading the course as well as the participants. It’s a win win.

We have support and advice from the York design service at York Uni (supported and funded by the National Institute for health Research) They advise researchers. They advised which funder to approach and will look at our ideas. What the research will look like. They were very positive about the research being high impacting. It’s been driven by people with dementia. They said, keep it simple and focus on one thing. We can build on themes in the future.

I said….”Develop in small chunks to make sure each chunk works …..and we’re on the first chunk”

There’s another department at York Uni called York Involvement who support people to be involved in research. They’ve said they’ll provide training for us, but I asked,
would it be of value as I would forget the content immediately, so probably very good for some but not for us.

Time was ticking so we swiftly moved onto the aims and question we could ask as our research question. I said, Can people with dementia have an impact on social perscribing?…….Howard and me came up with many ideas, but we couldn’t come up with a precise punchy question…….

We reverted to paper on the wall and a starting sentence and then swapped and changed words around until we were happy. My head was banging after concentrating for so long and with all that thinking…..

Such a useful insight in this stage of research – simply coming up with a title which many get wrong…..we did it and involved 2 people with dementia in me and Howard.

That was the wow bit of a verrry interesting meeting……….

I misread the number on my post it for my train times and ended up missing my train🙈…..luckily there was a bus waiting by pure coincidence so I got on that as the next train was an age away 🙄 but then that was mega delayed in the Friday evening traffic🤯……so I missed my taxi time 😩but my taxi people came up trumps and the man that as due to pick me up just waited around for me 😍 that’s why I like my taxi people………must buy them their next batch of goodies to say thank you…….

A Day in Sheffield……..

Yesterday was our Young Dementia Network event. It brought together researchers and people with dementia to talk about the value of research into care.

It must have been a while since I had to book a taxi to the station. Maybe a couple of weeks. I forgotten that process, that I even had to do it until I thought, ‘how would I get there’🤔…….then 😳😱🙈……..I need several this week and had simply forgotten…..just goes to show how quickly things disappear from our mind.

I went into the booking office, armed with bits of post its and words and luckily they still had one available for Monday morning.

The night had been full of rumbling storms but they’d gladly finished emptying their contents from the sky when I opened the curtains. It was a misty murky taxi ride over the Westwood but these beauties greeted me as I reached the station

I adore Poppy’s ….their simplicity, no grand show, but simple petals, a simple form like no other – beautiful ❤️

Good job I wasn’t heading to London as my usual train had been cancelled😳🙄……..More storms were forcast at lunchtime and you could feel the skies recharging as we trundled across the Humber, the tip of the bridge shrouded in mist.

My Alzheimer’s Society Research Network buddy, Sandra, had offered to meet me at the station and go with me to the venue. She’d even sent me some marvellous instructions to boot……As I was sat waiting for Sandra, out came playmate Julie. Howard couldn’t make it after all so instead of taking the tram we all shared a taxi.

We arrived at the venue, called the Diamond Centre and the centre stood up to its name..

Inside I was met by a lovely hug from my dear friend Professor Pat and then many more people followed. I met a new playmate Shelley, who is part of the lovely programme ‘The Restaurant that makes mistakes’……I love meeting new playmates.

Jan started with the breakdown of the day and then it was me. Part of what I said was:

Many of you here today are the very people who give us hope to find those ‘best ways’, those bench marks to live by. To you we’re all grateful for your passion, your determination and your desire to help……..we are experts by experience and your expertise along with our expertise must be a winning formula.”

Then it was the ‘goldfish bowl’….people affected by dementia talking together about a set topic, research on this occasion, with the audience listening then able to ask questions about what we’ve said……we all went around the table and introduced ourselves. There were Kevin, Julie, Shelley and me with dementia and Susan and Paul supporting Keven and Shelley. Reinhard helped keep us in line.

We had so many wonderful conversations on care research and our ability to find research to take part in. Many spoke about their involvement in medical research. So often we have to navigate this alien world and don’t know the wonderful care researchers exist. It would be so good if there was a way researchers could find us.

It made me question how we get out the word about care research as even amongst us, it wasn’t that obvious. I said how when people hear the word research many often simply think of medical research and are oblivious to the existence of care research…

It could be a long time before we get a cure and care is needed now” said Shelleys husband Paul.

Funding needs to be given equally to care as well as cure. It was a wonderful discussion about research from our perspective.

Up next was Prof Pat talking about her research on the Family Experience of living with young onset dementia.

Pat was talking about dementia from a personal and professional perspective.

She spoke from a personal point of view first and her own connection as her husband was diagnosed with Young Onset many moons ago when the children were much younger. Then went onto her research project and showed a lovely piccie of her and Mel….I was a Society monitor on that project and is how I met the Pat and our friendship began. They captured peoples stories, children’s stories. The smallest children came to them via their parents and Mel would ask them about their day, play Lego with them and simply let them talk. Some children spoke of the envy they had of their friends who had parents with cancer as they saw that as being easier for people to understand.

Their study gave children permission to talk about the negatives of dementia. Not everyone can live well. Not everyone wants to live well. Pats family didn’t live well with dementia.

For children it can impact on educational experience. Living with the grief while someone is still alive. Bringing weddings forward, etc. You can’t expect to put things right in the future, make amends , say sorry, as this won’t be possible for those living with dementia.

A wonderful talk from my lovely friend, but then I knew it would be.

Over lunch many people came over to chat. I’d offered to be on the Alzheimers society research Network stand, but sadly I hadn’t realised, that we don’t have our own research network banner, it was simply a society banner….which was such a shame as it didn’t say what we do on the box, but Ciara, assured me they were looking at getting their own banner 👍

Another fascinating conversation I had was with John Hudson from the Cognitive Daisy study

Photo

“They Cognitive Daisy comprises a flower head of 15 petals, each of which is colour coded and corresponds to performance on a specific cognitive task.”

The petals are left white if you can complete a task and coloured if not.

I said it could be used as a tool at diagnosis to show people how all was not lost when being given a devastating diagnosis. People just diagnosed could take the tests and see how much they still could do and for the things they had trouble with, it would highlight where they needed help and could offer practical solutions……

Once we were back in after lunch it was the turn of Prof Claire Surr…..over lunch, Claire had been showing me piccies of her adorable puppy ❤️…..but once I sat down, my ipad died again 🙈😩😱🤯……..it lasted the whole of Claires talk on ‘What Works’ in training…….😔

It only started again when the next speaker Dr Louise Ritchie started her talk on Dementia in the Workplace…….I suddenly looked up as the name was very familiar and I realised I’d taken part in this research in 2014/2015……one of my first research involvements………

Louise’s research raised more questions than answers. She’s produced an informative set of leaflets specifically for employees with dementia, for Human Resources departments, for colleagues and for employers – wonderful ⭐️

I took a piccie of me with both John and Louise but can’t find them anyawhere 🙄

Playmate Julie expressed the opinion that leading charities need to set the example and employ people with dementia on a paid basis.

So after a quick break we split into 3 workshops – Employment, Health & Social Care education and Family Intervention. I joined the one on Family Interventions with Prof’s Pat and Jan. We immediately spoke about the different challenges with Young Onset. You may be working, have a mortgage, have young children………we need practical and emotional advice for all the family.

Shelley is only 45 and spoke of her experience in Nottinghamshire, where they have one of only 2 ‘working age departments’ in the country……. Turns out my other playmate, Kevin and his wife, live in Pontefract!! I grew up in Pontefract😳 small world syndrome…….

Once again such good conversations going on…..I said, sometimes we just need to know that someone is there IF and when we need support. Stage appropriate service needing to be considered as well as age appropriate….we spoke how we have to fight for everything and how our personality can effect whether we find things out quickly or are left to drown.

We said soooooo much and learnt so much………

And I got a piccie of me and Shelley…..

We ended with each group feeding back their main points. From all the chatting, an awful lot was discussed. I just know I thoroughly enjoyed myself and best of all I met some lovely new playmates and their partners in Shelley and Kevin………..

If you’d like to know more or joking the Young Dementia Network, there’s more information if you click on the link below ….

https://www.youngdementiauk.org/young-dementia-network

A wonderful event focusing on eating and drinking…….

Yesterday I was invited to speak at another ‘different event’, this time focusing on food and drink. Long blog but lots to tell you……

David Barker from the NACC ( National Association of Care Catering) had asked me to speak at their North Region Summer Seminar in Doncaster.

The best bit of news was that my lovely playmate Chris Roberts and equally lovely wife Jayne, were also going to be there. Chris would be opening the event as he’s an Ambassador for NACC. The Agenda looked interesting, with mealtimes, difficulty swallowing and dehydration solutions all on the list.

David had originally agreed to take me and bring me back, but then Sarah, from the Humber Research Team had offered too AND that would mean I would have my very own therapy dog for the day as she planned to bring her dog, Lola………the company of the dog swung it for me…😂🤣😂

The day started off full of promise and morning sunshine….And became even more brilliant when Sarah Trufhitt arrived with Lola……who was my therapy dog for the day and who spent the whole journey on my lap

We arrived at the venue and went over to the RDaSH offices to have an before and after photo as apparently I’d advised them when designing their new treatment room, which was now finished…

After that we walked over to the venue to sign in and was met by my adorable friends Chris and Jayne, who took me to a quiet area as it was chaos in the first room.

We then all walked over to the seminar room where they had a sell out attendance. I finally met Big Ian from York and a perfect piccie opportunity

Lola settled down on her amazing cool mat and went to sleep with her teddy

David opened the NACC seminar. It’s sooo good to see a seminar devoted to food and drink. Jayne and Chris are ambassadors. It’s not just important for people with dementia, but like everything we always say that if you make it right for people with dementia you get it right for so many others.

My lovely friend Chris, gave the opening talk and they showed the list of things he’s involved in which was staggering but not surprising to me.

He spoke of the fear when diagnosed, how ‘dementia’ was a word used in their house to begin with simply due to ignorance and fear. They now use humour in their family. He stressed the importance of supporting the whole family.

“With all the knowledge we gained we began to live our life which in turn gave us back the confidence we needed to live.”

When you get me, you get one for free – Jayne – BOGOF…….😂🤣😂

Dr Nav Ahluwalia then spoke of the RDash research team, here, of which he is the medical director. He spoke of the 2 words that matter in NACC – care and catering. When the care is lost, bad things happen, when people are denied food and water, they die. They can be more essential that medicines and tablets. Because it’s about life.

If it matters to our patients, it matters to us”

So they’re not a specialist in any area because all areas are important to research if they’re important to patients.

He also showed a lovely slide mentioning DEEP and Lola!!! The power of animals to ‘feel’ should never be underestimated

Next up was ‘Tackling Dehydration for people with Dementia’. A young chappie, Lewis Hornby, talked about Jelly Drops.

They’re a life saving source of hydration…..his Gradma Pat was their chief researcher. She became very ill and. It became apparent that she was simply dehydrated, and for the final 6 months for his university course he concentrated on developing something that would help his Grandma. He found removing cutlery and replacing with finger food became the first step as he created a ‘treat’ – a jelly Drop – which enabled people to hydrate themselves. Brightly coloured bite sized water with added ingredients to aid hydration. Grandma passed the initial drops around but immediately wanted them back 😂….wonderful ❤️

They’ve now partnered with the Alzheimers society as part of their Innovation scheme.

I had to have a piccie with them at break time, Lewis on the left.

During break time people came up and chatted to me and Chris while Jayne and Sarah went across the way to get us a drink……

Drink was followed by a PhD student, Salam, from Hull Uni talking about her study on nutrition and interventions. The presentation was a tad academic, but students all have to start somewhere and hopefully as she develops she’ll become better at presentations for a mixed audience. Just because something is academic, doesn’t prevent it from being able to present it in a fun way…..

Chris showed me piccies of their dog and one superb one dressed in a Santa outfit …..❤️😍

It was my turn next and I had 30 mins to tell my story but also to speak about my relationship with food and drink. It was sooo fortunate that an article I’d written about food had been published in the Observer last Sunday. Sadly when I wrote it my issue with tea hadn’t begun……..

Here’s the online shortened version of the article if it’s of interest to you.

https://www.theguardian.com/society/2019/jun/16/how-dementia-robbed-me-of-my-love-of-cooking-wendy-mitchell-alzheimers

Before lunch there was a talk by Flourish on the dementia garden here.they spoke of the history of the walled garden and they now have Flourish café alongside

We all had a chance to look round it and we had many many official photos taken with Lola at the centre – wonderful.

It was a beautiful garden. The scent of the roses were to die for…..

First up after lunch was Big Ian, a man with a huge personality and a  heart of gold to match……..he started off by saying how when he was younger you always took holiday photos of the one you loved…….but so many dads have died with few photos of them as they were often the ones taking the photos……..

He spoke of Liz (my playmate from Minds and Voices, now in a care home) being the first nurse at St Leonards hospital and now she can’t remember being a nurse…..

He showed a lovely film of Mark Addy, of Games of Thrones fame,  reading a poem written by a friend of Ians……..

He showed a short lovely film…..made by people with dementia and family and friends from Landermeads….

“A film made by REAL experts”

One said…….“Please celebrate what I can do, don’t concentrate on what I can’t do”

If you uproot an 80 year old tree you need to be a very good gardener”

I couldn’t find my favourite film of my playmates Liz’s dad but here is “Dementia is a Team Game, who’s in your corner” – the film Ian made with boxer Barry McGuigan

Ian has a wonderful web site where you can view all his  short films, for which he has no budget but films on his phone……I’d recommend them for everyone as a valuable resource….

https://bigian.co.uk/

His piece was sooo good……entertaining, real, and made people think……perfect…..

Jo Bonser followed Ian……from HCS uk. Wanting to help care managers improve their mealtime experiences ……she asked a David Sheard question……”if you experience someone in your care home displaying ‘challenging behaviour’ at the dinner table, do you see it as your problem for not understanding the needs of the person’

She asked us to close our eyes and took us through a story through the eyes of someone with dementia and then asked the audience to comment on the mistakes that had been made and what could be made better.

It was nice that the attendees had picked up on things…….

She showed a place setting and asked what was wrong with it……I simply summed it up by saying it was rubbish………

She was very good and has written Dignified Dining Solution Guide from her experience with her mum. Her mum refused to eat or drink and the end of life team were brought in, so Jo started to look at improving the dining experience for people with dementia. She calls it her ‘little gift to the universe’ as it’s a free resource. Since then she has recently developed ‘the dementia challenge at meal time’ interactive session that she takes to care homes for staff to work through.

Lindsey Collins from Bradford University was up next, a PhD student who is studying a person centred approach to supporting people living with dementia and swallowing difficulties and is also a speech language therapists…

She told all those in the audience from Care Homes to become part of the ENRICH network, who are the research in care homes network…….

She showed 2 wonderful small videos of what a normal person looks like when swallowing and then the difference for those who experience difficulties……fascinating….

Finding out a by what’s important to the individual is so important to understanding their needs as everyone is different. “See the Person”

As a student her presentation was perfect and slides were simple to follow. She was so smiley, so animated and spoke with such passion……wonderful…….

Eileen Harrington, Founder of DonMentia, Chair of Doncaster Dementia Forum ended the day. She chairs the Doncaster Dementia Forum……her husband had dementia. Eileen had no respite and so now she raises money to organise trips out for others.

With the money she raises, she takes people to various places, but Cleethorpes is their favourite. She always makes sure there’s a meal involved. It’s totally free for people to attend. It’s a local charity for local people. Anyone in Doncaster is lucky to have her in their corner….

The organisers of this amazing seminar tried everything they could to make it an easy and good practice and they succeeded……So huge thanks to the lovely David Barker for asking me but also to RDash for hosting the event so well and in such beautiful surroundings.

I had the most wonderful day and me and Lola were exhausted by the end of it…….even though she slept and snored through my talk….🤣😂🤣

P.s…..don’t mention Lola to Billy……🙄

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…..