Category Archives: Involvement

A local morning with the NHS followed by a trundle to London…

Yesterday I had a 2 part day……the first was with my local NHS Trust promoting research and then I had to trundle straight after down to London, as I’m with Dentists on Thursday…… 🙄……

So my friend Cathryn Hart from the research team picked me up at 8am and helped me load my book filled big suitcase into a her car and we trundle towards the Trust Headquarters…..there’s been some lovely skies in a morning and this one was no exception…..

We arrived at the venue and the team were already setting up..Cathryn’s research team stars are one of the most organised teams I know……..but then they have a wonderful manager in Cathryn…..every team is only as good as the manager and the culture that exists…

People began to arrive…..all sort of specialties were represented, psychologists, Occupational Therapists, junior docs…..and many more….

I sat on a table with people who were talking about Christmas 🎄🎄…….how someone had bought a chocolate orange to go into her little ones stocking and was so far on her third one as she kept eating them on evenings when nothing but chocolate would do 😂🤣……..All things advent calendar were discussed….so it started off with everything Christmas and just up my street…….how the simple things are often the best presents…….one persons little one had asked for a sachet of Macdonald’s Tomato sauce 😳 and lemon hand wipes you get in some restaurants 🤣😂……….perfect…….

Emma Wolverson reminded me of Hull Uni online Dementia Masters course – all the course is online which means that people with massively busy lives and in full time work can also do the Masters degree. All their lectures are done on line too so people can be in the most random places. One person was even in the hairdressers having her hair coloured but because it was on line it didn’t matter and she couldn’t have done it any other way…….

Anyway back to the business of the day and promoting NHS staff to promote research in their day jobs….

They started with a lovely cartoon on screen which had been drawn by a research participant….

Because research really does change lives…….

Cathryn started off with the housekeeping and welcoming everyone. The programme was really varied simply to give people a flavour of how simple it is to get involved in research. ‘Demystifying Research” said Cathryn……

She then showed a video celebrating 12 months in the life of the research team…..”Continuing to change lives”…”Research is not just about testing new drugs”

Cathryn apologised for the self indulgent video, but there was no apology needed as it showed their success. We don’t celebrate success often enough…..they should be very proud of what they’ve achieved….they’ve made a huge difference to me…….

The next speaker was Carolyn Scott a forensic psychologist speaking about being a Principle Investigator and what if involved

….she spoke of TIME being the biggest issue as a clinician. Sometimes you feel like you’re drowning with the day too day workload so how could you possibly make time for research as well….? But then an opportunity arose on a hot topic in their area and they thought why not, as it was such an important area to research…if the passion is there and the desire to make a change is there then anything is possible….and the Humber research team made it feel straightforward even during the difficult times, which always happens in research…..I liked her slides as they were straight forward and simple and fun….

As a Principal Investigator, “It wasn’t as scary as I thought”

Alison , an OT from Hull Memory clinic and Maister Lodge spoke next about delivering an intervention in practice…

Social research was new to her as she liked data crunching (an unusual breed!)…😂

She then started to think differently and started asking ‘How useful’ is what we do, the interventions we provide?. She was part of the VALID study (Valuing Active Life in Dementia), she ‘s also involved in the Pathfinder study (looking at talking therapies for people with dementia who also have depression) and is now the Principla Investigator for the PRIDE study.

She spoke of why she does all this in research – because it gives her a bigger overview of her work. It’s good for her personal development and research gives an added bonus to her career as an Occupational Therapist. The Humber Trust supports staff hugely who are involved in research and being involved as an employee supports the Trust values of Caring, Learning and Growing.

I still get to be a clinician but I’m learning the extra skills of a researcher and more importantly I’m making a difference” It’s a win win….”

Emma from the research team then told everyone about the day in the life of a Research Assistsnt …..she’s been with the team for 3 years and is one of the team that has visited me at home…the team are all made up of graduates from a variety of background including Psychology, nursing and social work.

They work on many studies at any one time they they have to be good at juggling and very flexible…🥰

Their priority when visiting someone for the first time is simply to make them feel at ease and get to know them….wonderful and they all have smiley faces so even more perfect.

Before break a Junior Doctor had videod her talk as she couldn’t be at the event. It was all about her involvement as a Principal Investigator in a study – it helped her develop her leadership skills and it allay her fears of research as Cathryns Research Team were there when she needed them.

Tea break time and a mince pie……..🎄

Next up was me…and the team had made up a lovely slide for me to have in the background…

….part of what I said was:

Maybe some of you have been diagnosed with a condition you weren’t expecting or someone close to you. It can be devastating not only for you but all those around you. We’re not the only ones to get a diagnosis. You trawl the internet for clues, for help for advice, we all do it. But what do you do if that diagnosis is a life limiting condition? What do you do if that disease has no cure. Where do you look then?”

Dr Soraya Mayet was up next talking about Telemedicine in Addictions…..Opioid addiction ..they wanted to look at ways in improving attendance at 3 monthly reviews by using Telemediicine.

The point of it is to overcome geographical barriers and increase access to healthcare but there’s been little research done on Addiction. Our local area area is 900 square miles and people often have to travel huge distances to attend reviews so Telemedicine may overcome this. Fascinating insight into the region’s Opioid addiction, the difficulties to overcome and solutions ………at the end of the trial they’re asking all involved, participants and the professionals what worked and what didn’t.

Emma Wolverson was last to speak about Caregivers Pro. The aim was to design a website for people with dementia and their supporters. The study came to an end earlier this year was Emma was here to show “you can survive’………they didn’t get the findings they were expecting but they learnt so much more.

Web sites that currently exist give support to Carers so they wanted this one to include people with dementia. They wanted ways to provide peer support when people were isolated. When are people ready to step through that door for social support? The focus groups showed how they wanted a ‘monitored’ website and kept up to date. They also wanted to be shown how to use the website. It did lots of things but it also had a “newsfeed’ a bit like Facebook which provided people with the ability to post things.

They were given a tablet which only had the web site. They recruited 200 people

 

People with dementia don’t use technology” was the barrier they kept meeting…….but once they recruited people they proved how ridiculous this statement was. They recruited some people who had never used the internet and they were able to learn……there was no difference in time of usage between carers and people with dementia.

Fantastic interesting findings from the study………especially the time people logged at. The peak time was between 9-10 in the evening. So filling a gap when professional might not be available. Those who used it more were people who had attended face to face training. They’d formed relationships face to face and kept up these friendships on line. So technology alone may not be the sole answer, but combining it with face to face can enhance and improve.

The outcome studies showed no improvement between those that used it and those that didn’t. BUT as Emma said we need to be better at measuring outcome measures in Dementia Research. It’s no good asking us “How have you been feeling in the last 2 week” because all we remember is now…..so it has shown how the debate over Outcome measuring in Dementia needs to be totally overhauled…….which can only be good for dementia research and probably other research.

Emma ended with a slide with apparently quotes from me which was nice

Time for London now…….

A link to a haunting, beautiful trailer……..

Today is a simple blog for me as I head towards Penrith for a difference type of Conference for me on Saturday, which means I’ll be able take a quick trundle on the bus to my paradise of Keswick hopefully , just to say a quick hello to calmness…….think I said ‘yes’ to going before asking what it was a about ….🙄🙈😂

It’s 2 links……one, a vimeo made by the talented artist, Suki Chan, with some input from me…..on Consciousness…..I truly love the bee hive at the beginning that resembles the folds of the brain…..along with the haunting music that matches perfectly….it’s a short trailer as we’re planning on doing some more work around this…..it’s my voice at the beginning talking about the fog I experience…..

The second is a series of words and pictures around the same theme, some taken when Suki visited me at home…..”Suki Chan applied for funding through Developing Your Creative Practice, to focus on researching and developing CONSCIOUS. A new project that will explore consciousness, Artificial Intelligence and dementia”……….you need to swipe up from the beginning…

https://www.artscouncil.org.uk/long-read/conscious

Can’t wait for the next phase of working with Suki……..

My Trial of the Guardian II Watch…….

I’m often asked if I’ll try things in the hope that I’ll like them and write a blog but I rarely say yes to such requests as I feel a tad used. However on a couple of occasions I’ve said yes, simply because I can see it has the potential to help many people. So it was for this reason that I said I would test the Guardian II Watch. It’s potential seemed huge on the face of it. The ability for supporters to retrace and track our whereabouts, our heart rate for health issues etc. So when it arrived in the post I was really excited to get going with the trial……..so here’s my thoughts, written as they happened, so maybe a tad random….

I got in a bit of a pickle setting it up…..I didn’t realise that I didn’t need the app…..it was my daughters or those needing to keep tabs on me who needed to do all that bit but the watch had to be with them. I suppose they imagined someone else would be setting up and not me! 🙄

However, I went on their web site and had a lovely on line chat with their technical support who helped me through it. It was far simpler than I’d made it. Might have just been good if the instructions had been a tad clearer at the beginning about who needed to download the app……

I’m not sure it’s made for someone with dementia to benefit from but I can see how it’s potentially useful for those supporting someone….. I thought I’d be able to see where I was on the watch, but I have to go on the app to see that.

I wish it wasn’t black…..black is such a bad colour for me – the red emergency phone button is good, just not the black…..

Steps don’t appear to be accurate at all….i know my routes and I know my steps and it was often way out.

So all in all the benefits come for those not wearing the watch, that is if it works how it’s suppose to work….

Once I got used to how it worked I began to understand it but it wasn’t intuitive for me.

When Sarah loaded the app it still wasn’t clear and we added the device but it still said add device when we tried to load it again it said request already made. The Home screen simply went back to ‘Add Device’…..we deleted the app……when Sarah tried to log back in it said ‘user did not exist’….🙈

The one thing I liked was the red button which can instantly make a call to numbers you enter in the phone, like my daughters in my case. But it was acting like a back button….i couldn’t make it call anyone. Found out you have to press and hold down the red button.

All a tad confusing……

In the instructions, to set up it should have – If you are the wearer, do this or If you are the supporter do this…and they did listen and accept that would help….

The heart monitor doesn’t seem to be accurate all the time. At one point it said my heart rate was over 100 but when I took it at the same time, it was 70 – which could obviously cause a panic when it’s not needed. Sarah, a nurse, also took my heart rate…..totally different reading and potentially could lead to action being taken when not necessary. The pattern overnight and during the day were quite similar and didn’t’t seem to make sense


Night time

Day time..

Having to charge frequently might be a problem – it says every 2 days, but I had to charge mine every day ….but it does send you messages to charge which is good and buzzes on your wrist.

Ideally It needs a one click to find real time tracking. You can compare it to a poor website that’s hard to navigate. When you need to find where someone is walking and the direction, you need it immediately. Supporters lives are stressful enough they need simplicity whereas this creates anxiety in its complexity and delay.its downfall is its complexity.

The playback data one day said I’d been to Southampton but in fact I’d been to Birmingham and nowhere near Southampton 😳…

Its not actually tracking me as it goes in a straight line as the crow flies. Not intuitive where you find thingse.g to click on a plus sign to find tracking. It only joins the dots of each point located so thats not really tracking to me.  If i went for a walk at 3am there’s nothing on the app that will help anyone unless maybe they happen to be looking at it at 3am

One day I went to York but it only said I went to Market Weighton and then another day it said I stayed at home when I went out on the bus.

So …….all in all….if it did what it said on the box it would be excellent, but quite simply ….and sadly…….it doesn’t…….I wonder if people with dementia and supporters were involved from the start in the creation…..🤔

Anyway, I sent this part of the blog to the company in order for them to have a right to reply and admittedly they did seem very surprised at all the problems I’d had. In the end they asked if they could send me a replacement to start again, which I accepted. It also had a blue strap 👍…However when it arrived, me and Sarah decided that we would set it up as they intended with her as the set up person. But this is where the trouble started again…….

We followed their instructions to ‘unpair’ the old watch, but then it wouldn’t recognise either of us as the ‘admin’ person. So I had to send the company of a screen shot saying that set up was ‘processing’ but going nowhere….🙈. We couldn’t register as new users and it was as though they needed to totally take us off their system and start again …….

Support came back to my email quickly and suggested they set it up for me – not quite what I wanted but our patience was running out.

However it worked, although it did tell me I was in China one minute and home the next

Kept telling me battery was low when I’d just charged it to 100%

Another day arrived I was back in China again 🙈

The walk I did around the village didn’t track correctly

After they’d done a check on my phone they emailed back to say it had been connected to the persons international phone and they’d forgotten to remove my new watch from the server…..It’s definitely not tracking me every 10 minutes as it should do.The map it then gave wasn’t correct ….

Sadly also, I was back in China

On Thursday when I’d walked miles it said I’d walked 702 steps.l….

The company decided to send me a 3rd watch……..I’d suggested the time zone was incorrectly set, which they agreed, which is why I was appearing at my daughters at 4am in the morning 😳🙄…..and why other strange things were happening time wise.

I decided it might be 3rd time lucky, but sadly we weren’t impressed. It had me travelling to venues several times back and forth when I went once…..

my heart rate still didn’t seem right and the steps really weren’t right. The final straw was when it showed me back in China or Japan or somewhere.

Fair do to the company they did try and fix the bugs and listened to what I was saying. What I hadn’t realised was that it was already on the market and being sold for £200 …….when I said this they said they hadn’t had any come back from any other customers.
However, I pointed out that perhaps customers would believe what they were seeing. They weren’t trialling it. I scrutinise everything when I’m asked to test technology, so I never believe what I see. But the unnecessary worry it could cause if others have similar or even lesser problems is not on…if you pay that much, you expect perfection….

Would I recommend this watch – certainly not at the mo. If they sorted out all the gremlins and it worked as it was suppose to work, it could be perfect and just what we need….…..it’s another case of ‘involve us from the start of the seed of the idea to avoid issues”……

Why acceptance of social care need isn’t always a given…..

Yesterday I trundled to York Uni. I’m involved with a study being carried out by Mark Wilberforce, Senior Research Fellow at the Social Policy Research Unit. Some time he asked if I would be interested in working on his project around helping older people to engage with social care where dementia or a mental health needs made it quite difficult. Universities love their acronyms and so it will be called the ‘HOPES’ study (as a shorthand… Helping Older People Engage with Social care.)

Many people with dementia and mental health issues, quite understandably, can be reluctant to allow strangers into their house. Home carers can often see this as them not wanting help and dismiss their reluctance, reporting back that they didn’t want to accept their care – end of. These people are then left without the social care needed because no one looks into the reason why……until a crisis occurs😔 With resources and visits being short, training limited, time is often one thing the home carers lack to enable them to build up trust and a rapport. The easiest solution is for them to be classed as -refusing sevices……

The study aims to find out what makes Specialist Support Workers in Community Helath Teams effective in encouraging older adults to accept social care….

So a very wet night was followed by an equally soggy morning and a grey world greeted me. A misty murk hung over the Humber as we trundled by

As we trundled further down the line towards York, the rain became torrential, fields were flooded, happy dogs accompanied by bedraggled rain soaked owners, heads down and possibly walking a tad quicker than normal……🥴

I was heading to York with their notorious sirens and loud unbearable noises so had my hearing aids in situe..but then….a beep beep in my ear signalled the batteries needed changing 😳….first time that had happened…..and never occurred to me to carry spares…..🙈..so it will be an ear piercing time in York….🥴 Alarm immediately set to put spares in my bag when I get home…🙄

Mark had told me to get a taxi to the uni, to txt when I arrived, and he’d come and get me and I had a nice taxi driver and saw the floods continued with the River Ouse overflowing….

Mark met me as promised amidst Freshers week with people more lost than me!!😂🤣

Also there was playmate Maria Helena and husband David, along with Mark and Louise, (researcher)….
David told us about Maria Helena’s, who’s from Columbia, her time with dementia…how point of diagnosis is a very lose phrase as no one knows when dementia started….it was a wonderful story and one I could have listened to for ages…….love to hear peoples stories❤️…I realised I know the lovely couple from Minds and Voices!

Mark started off

And explained what the project was about and how we can influence and contribute to the project.

The point at which people need care is different for everyone.

So we’re looking at those in later life, with dementia and also those with mental health issues. The department of health has recently become the department of health and social care, but the joined up working is yet to materialise. Social care isn’t free so getting social care is challenging from the start.

“If only the help was offered in a way that recognised and adapted to the person living with dementia”

maybe it would be easier to accept. Imagine someone undressing you when you didn’t understand fully what was happening – you may lash out or refuse – I would! A care worker might see the person as ‘being challenging’, simply through lack of training, in how to manage these situations

The crisis can then happen when the loved ones can’t cope with caring and a state of neglect or poor living conditions appear……simply through lack of understanding from the start.

Other people shape our identity……the steotypical image fills peoples minds and we suddenly become ‘a person with dementia’ instead of a mother, a person who worked, etc etc.

Specialist support workers, employed by the NHS work in complex care, are supervised by professionals. But there’s no evidence as to how they help people to accept social care. People have to be referred by the Gp but once again, post code lottery exists. They’re not qualified and registered – if you think of teacher and teaching assistant, these are the assistant, but they’re a bit more than that as they don’t work alongside a professional. They don’t have a professional status though.

I’d never heard of them but as with many things, they have different names in different areas…….in Humber, for example, they are ‘Support time and recovery workers,’……no wonder we get confused…..

They help people who don’t want social care not to fear it – so that is where this research comes in….we need to find out what makes people happy to receive social care through the interaction of these specialists support workers.

We want to fill those blanks on the chart…

We’ll do this through interviews with people, home care providers, specialist support workers and also have focus groups with people who supervise support workers.

I asked does the system break down once the specialist worker overcomes the fear of the person, is the person transferred back into ordinary social care system and collapses once more? – this is what we want to find out. In theory there would be a handover but does a care worker listen and take notice or does it end up back to square one?

Me and David contributed with soooo many questions and suggestions…..it all started to get very exciting about us being involved with the ethics committee, with focus groups, interviews and evaluating data…..but that’s me getting carried away in the excitement….

Many research applications are pie in the sky, the ideal situation and I stressed the need to be flexible and getting this over to ethics. How, yes would would like to be involved in many ways but we have to be realistic and so have a reality check on involvement as well, which may change as the study progresses.

After lunch, Louise went into the approach process – and we were shown the information sheet to comment on ……..we preferred the one that was set out with pictures instead of just words….and I said how I love research but I hate getting the information sheet with so much detail…and I brought up the feeling left when the researcher disappears and we’re left with the endless sheets of paper, all official looking if words only – if it’s official looking and just with lots of writing we might worrry about what we’ve signed up for. If it was friendly with images we may feel less stressed.

Sooooo many good ideas, issues highlighted and suggestions given. Louise asked our advice for how to start the interview. I said setting the scene is the most important part of the meeting – a friendly person, establishing rapport is far more important than asking the questions straight away….

Another fabulous study to be involved in….. Maria Helena is at a later stage than me but her gentle husband, David, is wonderful with her. Maria Helena shared laughter and made her presence known and shared hugs and chatted, lapsing into her native Spanish. She told me off for calling her Maria – ‘Maria Helena’ she told me and quite right too! She kept hugging Louise and saying how wonderful she was. That was Maria Helena’s contribution – Louise would be carrying out the interviews and her warm friendly disposition appealed to Maria Helena. If she hadn’t had the right character she may not have got that response. …Just because people have lost full power to communicate, doen’t mean they can’t communicate, can’t contribute. Maria Helena communicated loads in HER way.
It was lovely having her there which made the group photo even more special

Us as experts by experience bring something extra to the table. The academic experience and the expert by experience partnership is one that can only make research better……

Final Day of Dementia Enquirers gathering…….

At the end of the session yesterday we said goodbye to Tom, David and Rosemary, our abler enablers, and also to Mahri and Hugh sadly, but we had 2 surprise tea guests in Reinhard Guss and Toby Williamson.

Before we met up with them we all had a welcome respite in our rooms – for some it was sleep, for others a stretch of their legs, to catching up with family or friends on the phone, for me it was silence, time to close my eyes simply to block out the world. My silent world of conversation on Twitter bringing me back to life…..

Then for our tea gathering – photo courtesy of Reinhard…..

Once again laughter and conversation dominated the time but sadly I had to be the first to leave again, Philly helping me to wobble across the darkening courtyard to my room.

Morning soon arrived and our final day began, although today was to be a half day before we all ventured home. Breakfast was a gentle affair before we all met in our final room – a reduced number but perfectly formed…..

We talked about how this 3 days had worked and we all said how if it had to be London it had to be St Katherines as it was an oasis in the centre of the chaos of London. It also meant the professionals could attend which added an added an extra dimension to the discussions……yesterday really wouldn’t have had the same impact without them…

We then spoke of future plans and the topics for the morning – The ‘Belonging’ project with Chris Clarke from Hull Uni. That feeling of ‘Belonging’ could increase through our Dementia Enquirers so we’re looking into whether this happens and how to measure it.

The second was due to happen on International Disability Day in December – a zoom meeting with Tom Shakespeare on Research being done by real people of all disabilities. The intention is learning what obstacles they’ve have to overcome and also share learning through our experiences..

The third was Dementia Congress and our session on Thursday 7th Nov morning.

Names and dates all sorted and allocated….

We then had a discussion about our needs when asked to speak at an event and we decided we would record a dementia diary all together, there and then….talking about what makes or breaks us when that email comes through and – how we feel when it goes wrong and ending with how it makes us feel when it goes right.

It’s not rocket science…..but it’s amazing how many people think we magically appear. DEEP and Innovations get it right every time and I feel safe in their hands as we all do. I never worry when I’m in their hands…..I never plan half as much when it’s them because there’s no need.

We spent the time before break reflecting on yesterday…….through recording a video

The first question Rachael asked us was ‘I feel like a Researcher’ – giving a score between 0-5 where 0 is no knowledge. I said 5 simply because I have such a passion for research. I may not have the knowledge but I have the passion.

We then spoke of David’s Oral History project and we all said how powerful and emotional that made us all feel. He didn’t question whether we could learn this new skill. His humour, his passion, his belief and his understanding made us feel as though we could.

We fed off each other’s positivity and concerns and the outcome of a video was pure magic. I said we were sat in a historic moment in time and, WOW, how amazing that felt……

After a cuppa tea….we then had our final session on ‘Belonging’……a measurement of belonging with advice from Chris Clarke of Hull Uni.

By being involved in a Deep Network project like Dementia Enquirers, will people gain a sense of belonging?…we need to find a way of measuring whether or not this is true ….

Again, Rachael asked us What does the word ‘belonging’ to DEEP mean to you?…..for me it was comfort…..many great contributions including safe, accepted and valued….I don’t trust many people, I trust my daughters and Stuart, as they’re my world, the only other person I trust 100 % is me as I won’t let myself down. But I trust DEEP implicitly not to let me down – they’re the only organsaition…..

We all gave out such personal comments and feelings because we felt safe and ‘belonged’ to each other. None of us felt this unique feeling of belonging related to time – we met through the tragedy of dementia – it was that one common denominator that had brought this family of ours together and given us that instant feeling of belonging. We would never have met if it hadn’t been for dementia. It was all very emotional for everyone. We spoke about the ingredients of ‘belonging’, why DEEP is so unique and special…..

The morning passed so quickly that lunchtime arrived and then it was time to go our own ways but not before a final piccie

To end this blog my quote of the day has to go to Dory:

We’re all unique and wonderful but together we’re a Masterpiece” ❤️

Day 2 of Dementia Enquirers……

The storms of the day before seem to have subsided but the uneasy feeling in my room continued…..there was something about my room that felt so sad, as though a tragedy had occurred here and left behind it’s mourning……it felt empty of any kind feelings. I know that sounds odd but that’s how it was…..

Breakfast would be the first time we were all together as Agnes arrived late from another event and I’d already gone to bed. Twitter showed we were awake so at 8am we met up for breakfast and had our hug…..before putting the world to rights on all things audiology, but also dispairing at the latest news from NHS England that appeared on Twitter

As we all said….where is the evidence that taking people back to any time helps as some may find that period of time a distressing period in their lives; it will need updating constantly. Why not simply ask what matters to each person and treat them with kindness and knowledgeable staff? Why waste money when it’s being said no money is available for staff and staff training? Rant over…….

So time for a calming photo of St Katherine’s courtyard looking towards the chapel…

09.30 arrived and we all met up to start our session.

Rachael started off and we simply went round the table and introduced ourselves again as Tom Shakespeare, Rosie Ashworth and David Crepaz-Keay ( our more than helpful professionals) had now joined the party.

It was a full day and as Agnes said, our meetings are full of laughter and conversation which helps leads to more in depth outcomes…..many sceptics may see this as a trivial exercise and why on earth have we been given half a million pounds when it could have gone to real research……..well, this is innovative true research and the money could not be better spent….The national lottery were blown away by our format……

Time for an early morning piccie while everyone was fresh! The full gang😊

We recapped on yesterday afternoon and the successful bids from DEEP groups for funding and the detail of each project, which are fascinating.

We all stressed the point that we’re not trying to prove our finding better than researchers – we’re saying how academic research AND our own research could be a force to reckon with as we’re the current missing link. To enhance the current process of research could only be a good thing.

Interestingly Tom, said how the list of projects are unique and probably havn’t been researched before……which just shows their importance…

We had a wonderful discussion around the vast difference in care for those with different disabilities – David said  “Society makes these ‘mind/body’ splits when thinking of disability.”

We then went onto possible seminars and webinars opportunities. We’ve got a number of stakeholders (people interested in our progress) and those supporting us as well as ourselves and of course, the wider world to keep communicating with…..

We’ve been given a spot at Dementia UK Congress…so Philly and Rachael will be sorting that out to see who logistically can attend.

There was then a discussion which lost me a bit on Rights as I can’t keep that legal info in my head but the likes of Howard are far more knowledgeable and skilled with all this so I’m happy to listen and let it disappear from my brain…..

There’s a Special edition of the Purple Dementia Journal (an international journal) and in the new year are running a whole journal on articles by people with dementia on research and our paper will be in their. It will be online in December and hard copy at the beginning of the year. Great news!

We spoke of the various ways we could advertise the work we’re doing to show people our work and what we’re capable of…..as people living with dementia…..lots of great exciting ideas – watch this space!

Tea break time and still the conversations continued…..and David even met the needs of Rachael and Philly by going to the shop for cake ❤️🤣😂

After a break David spoke about developing an oral history project.
So why would we want to do an oral history about dementia now……..because we’re in a point of time where it matters…….

We’re marking a point in time, just as he did about asylums. He wanted people to know what it was like, but not from a perspective of others but a perspective of people who lived those lives.

Placing our stories in a social historical context, and sayin this is our story at this point of time will be a really important document for now but also the future to show what living with dementia is like at this moment in history.

So what is oral history? – it is simply us telling our story……it’s placing it in a social and historical context.

It’s history – what people will see as the state of the world at that point in time……

The curator of Oral history at the British library advised David how it should be done for his project and we would have to be trained at how to do an oral history interviews for ours, but what a new skill to learn!. We should be the interviewees and interviewers.

I found David’s talk the highlight for me. His enthusiasm for this project with us is so infectious, I just can’t wait to be involved.
If we don’t tell our story, someone else will and we will do it better……it’s nothing to do with technical skills, it’s all to do with values, OUR values to our world, not politicians, healthcare professionals or academics….OURS……..giving people the space for people to speak about their life worth living……because it’s called “oral’ it doesn’t all have to be solely the spoken word – objects, photos, capturing facial expressions are all important. Bringing jigsaw pieces together in an oral history format……the life history of so many people have been lost through dementia and we don’t want ours to be lost.

Blown away by this……⭐️ and he also added…..

You can’t go for more than 7 minutes without laughter”………❤️…I’m sure it’s laughter that help us focus on the task in hand, as we release the tension of having to concentrate so hard through laughter….

So now to lunch……..whenever food is available I eat……another reason for going to so many events! 😂

Anyway after lunch we had Sini talking about Theories of Change……..from the Charities Evaluation Services…..

Understanding why things happen and evaluating our work….what changes may happen, what sort of things will need to happen to make the change happen…..

Evaluating is Improving what we do and learning lessons for next time and it’s important to demonstrate what improvement we’ve made….and provide evidence to those who require evidence.

She showed a great slide demonstrating the chain of evaluating research…

Outcome is what you actively work towards, Impact is what you hope for…….

She used the example of having a birthday party to demonstrate each stage.

She suggested the best way for our project is to go backwards and start with deciding on the Impact we want to have ………it went a tad downhill and brain explosion time…🤯 I just started to get confused as Sini worked backwards, with different colours and confusion reigned…….we were split into groups and………we each had a different outcome to discuss the inputs needed……sooooooo

We had 3 topics to discuss in groups but my batteries were running out and this Duracell bunny was losing her hop……..

It was a wonderful discussion but a tad too far for me. I know I contributed but couldn’t type and contribute…..so here’s where I end for the day……..and after a long but amazing day we trundled back to our rooms for a piece of silence before tea….and passed by this wonderful statue on the way……

Final day tomorrow……

Heading to London ……….Day 1

After a lovely overnight stay in Leicester I arrived home mid evening to pack for the next trundle the following day to London. I’ve got a full diary now until the end of October and they all seem like a good idea at the time. But then November is quieter – I wish events could be spread themselves out a bit better 😂

I never know when it will be my last, like never knowing when the ‘last’ of anything will be, so, although I decline lots of offers, I do like to cram my diary,and suffer the consequences after🙄

On the way home from Leicester, I had a sudden panic of not knowing anything about the following day. I had a hunch it would all be waiting for me on my kitchen workshop, but couldn’t remember any detail of when and where I was meeting Rachael from Innovations. I knew my brain would have shut down by the time I got home so simply txt Rachael. She came back with the detail and I was a happy bunny. Whenever Innovations in Dementia are involved I never worry or plan as much, as I know they’ll look after us and sure enough, my pink file stuff was all sitting happily on the side when I got home……

Waffling again …🙄…..it was a very wet blustery day that greeted me…the only piccie I could get was a rain soaked window so I missed that one out….Piccie of my playmates later will make up for it…..

We were gathering for 3 days for a Dementia Enquirers Pioneers meeting at St Katherines in London. They’d tried to build in more travel and recovery time as it’s a very intense few days for our brains to cope with, but very pleasurable. I don’t think I’ve been to London for months 🤔….and definitely not since I got my hearing aids, so it’ll be interesting to see how the noise is…

Half way there and the skies brightened a tad…well the rain appeared to have stopped…

Rachael met me at Kings Cross along with Dory and then Philly and Tracey joined us and we all trundled in a taxi with a lovely cab driver who was entertained by our stories and laughter, especially about the 3 of us all being in yellow coats

My blog told me I’d been to St Katherines in the East End 3 times, but as the man showed us to our rooms through the maize of corridors and stairs, it felt unfamiliar. It didn’t feel right for some reason. I spent the next few minutes walking round in circles around the room, trying to settle myself – don’t know what was wrong with it….just didn’t feel right or friendly…🤔😔 not sure what’s going on….

We arranged to meet for a cuppa and catch up of the session at 4 so solitaire filled the gap and catching up on Twitterland….and once we were altogether the laughter began again…

We went over the last meetings. We were shown the little video we made talking about reviewing the research projects. You can view it here

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

The film shows the calm relaxed atmosphere we create and can work in with each other. We speak from the heart, and feel so calm and comfortable. We all agreed that it’s other people who make us feel uneasy but here we always feel calm with Innovations because we know everything will be ok, no matter what.

We went through each of the groups who have been awarded money to carry out their own research. Such fascinating projects – “Living alone versus living as a couple”
“Does class and ethnicity impact on the dementia pathway for the person with dementia”
Testing out accessible instruction videos for Alexa
To “how can public transport be improved” and many many more…..

It was lovely to see and be reminded of them all again.

Amidst the crashes of thunder, lightening and torrential rain falling outside, inside we were happy and relaxed. We were saying that this has never been done before…..people with dementia in the driving seat and so many professionals are watching and listening…..just to see whether it works…..well, so much time, effort and funding has been put into this project and the way we’re recording the progress will become an historic record for the future….how amazing to be part of it…❤️….to show what people with dementia CAN do……

Finally time for tea. Once again, laughter and conversation dominated this simple activity of eating but we were all fading, or at least I was….so instead of joining the evening sing song, I retired to bed and some silence…….

P.s…..my hearing aids have made London into a tolerable noise bubble instead of the crash bang wallop city of old…..wonderful……day 2 tomorrow…..

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.

First of Two lovely days at Woodbrooke……….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Poor Philly was getting brain ache from all the maths

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

Finally ………We finished!!!!! 🙌🙌🙌🙌🙌🙌🙌🙌🙌

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

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

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

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

A Day at the Royal College of Nursing………

Yesterday I trundled down to London at the invitation of the Royal College of Nursing. I’d been invited by Admiral Nurse, Rachel Thompson to be part of a small focus group to help update the RCN Dementia SPACE principles.

SPACE principles have been used in hospitals to improve care for people living with dementia. They needed to update the principles so they can be used in other areas – wonderful and about time……….

Anyway the morning was very misty and murky as the taxi trundled through the Westwood

Likewise a spooky veil of mist hung over the Humber hiding the tip of the bridge as though it hadn’t quite pulled back the bed covers……

The early morning train is often nice and quiet even when busy as people nap and simply sit or are frantically catching up on work emails. Even the train managers announcement sounded quiet as though he was just waking up too……So I’m able to stare out of the window with a quiet brain requiring no activity. A good start to the day.

As we neared London, the sun decided to throw back the covers and greet me shining brightly.

I got the tube to Oxford Circus and wandered in the sunshine to Cavendish Square. Outside stood Rachel and Deirdre and we went in and saw a nurse made of Lego!!!

Upstairs we were joined by Dawne Garrett from the RCN who is the lead for the RCN for Dementia Care, Maureen, Sarah, Susan, Deirdre, Nikki from the RCN and the lovely George.

The Royal College is reviewing their SPACE principles and underpinning statements (top 5 ingredients to support good dementia care) Rachel had designed a very good pen which had a banner which pulled out of the barrel, on it saying what SPACE stood for…

This is one of a series events and they’ve started with us and will then be going out to hundreds others after our early input.

We started off with an ice breaker and chose a picture card that describes us. I chose a row of colourful beach huts, simply because the colours appealed to me.

So after simple introductions with the pictures we began. There were 3 of us living with dementia, 3 supporters and 3 from the RCN – perfect mix!

Rachel then gave us some background of the SPACE principles. Originally funded by NHS England. When they began it was a very different time – about 10 years ago. They asked people what needed to happen to make the experience in hospital better……..we all know how so much more needs to change, hence the update now.

Dawne spoke about introducing the principles to Care Homes with some adaptions. There are more beds in the Care Home system than in hospital so introduction here is also key. Some of the language didn’t quite work for Care Homes. So they want to widen the use of the principles into Prisons and Hospices also.

Three extra areas are being looked at as additions now – Post diagnosis support, Engagement in Research, and End of Life and Care planning. They also want to include information and advice on risk reduction for people. So telling people what might help reduce their risk of developing dementia.

Nurses are one group of unhealthy professionals – patients often bring in treats, which nurses tuck into because they don’t have time to take breaks, they do shift work, drink more, smoke more and are stressed. So nurses are a good place to start the risk reduction.

So we’re here to broaden out the use of the principles. They’re not mandating a process, but they are showing good practice which is available to anyone, anywhere. It’s up to individual Universities whether they include them in nurse training. Good Universities will see the need. They don’t ‘have to’ teach about anything, they individually decide, that’s why dementia does not figure largely in most courses. ‘The wise ones’ do.

Dawne then split us into 2 groups. So me, George and Deirdre in one and supporters in another.

We first looked at the ‘Staff’ principle….our first question was to question ‘What is good quality training’? They need to define. Those who have contact with people with dementia of any profession, need far more than ‘awareness’.Rachel mentioned the “What Works” project from Leeds Beckett.

Next up was the second principle, Partnership: Just needs to be  more specific in certain aspects.

3rd principle was Assessment and Early Identification. My first thought was that if theye’re promoting early diagnosis, then ‘services’ may not be key, but practical advice might be. Again the wording needed tweaking. George also mentioned that we should all have a Care Plan and none of us round the table has.

Principle 4 – Individualised Care. We added 5 steps to wellness and peer support.

We were a tad discombobulated or at least, I was, so we stopped for lunch and a cuppa. We chatted about this that and everything including the ‘Casualty’ storyline.

Once all fed and watered we came back together again and went through the notes for each principle from each group. It was such an interesting exercise and always is when people living with dementia and supporters are brought together. I’d stopped typing for this bit as my head was finding it hard to concentrate now. It was a lovely group with lovely people, all very relaxed and all listened to………

It was lovely and bright as we made our way into the sunshine. After our goodbye hugs, I stood a while and just caught up on messages and checked where I was heading for next. Good job, as I’d told Rachel I was heading for Manchester. Goodness knows why but I suppose I am often heading there but I was heading for Blackpool ready for me talking to a group in Fleetwood on Thursday 🙄. I can only cope with one event at a time, especially when they’re back to back……🙈
Today was also the first outing for my new best friends. I’ve finally found some ear plugs that help. Thanks to my friend Sandra for sending me a link to them. Yes, expensive, but they were brilliant ⭐️