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…….

On the 5th Day of Christmas what YOU can do for US…..

I’ve been asking playmates up and down the country….

What simple, practical, cheap tips do you have for OTHERS to help make it easier for YOU to be involved in projects, meetings and events?”

So today sees the  Number 5 window being opened…….

”Send us an Itinerary of what we’re doing when including travel arrangements..”

Everyone likes to know what they’re doing. For us, it’s vital that everything is planned so we feel safe and organised. I can spend hours writing out my journey plan but now get the numbers muddled, so if someone has done it for me it makes it even simpler. Others find the workings out even more difficult, particularly if there are changes to be made, so help all you can….but try and get everything on one size A4 sheet..

Train Chaos and Quick Thinking……not on my part!

So after Mondays meeting in Durham we all trundled in a taxi to the station…..but when the cab arrived the driver pre warned us of chaos at the station 😳……we all quickly began to scan our phones, me included, to find the latest updates, only to see a stream of ‘Cancelled’ or ‘Delayed’🙈

They suddenly announced that coaches would take us from Durham to Darlington, but they weren’t sure when🤯 and then we’d have to get another coach from Darlington to York, after which trains would be running south…mmmmm…..so Mara decided we’d all get a taxi from Durham to Darlington as we’d get a head start on everyone else.

We had to get 2 taxis as a poor Norwegian girl had latched onto us and was in the middle of the chaos in a foreign country so we couldn’t abandon her…..so 3 in one taxi, 3 in another…..

It was dark by this time and I just had to sit quiet. Travelling in the dark conjures up scary shadows in unfamiliar places so I simply sat trying not to panic at the knowledge I didn’t have a scooby doo where I was. But thank goodness I wasn’t alone.

It took us about an hour to get to Darlington where more chaos was in situe…….they directed us to another queue for a coach and this turned out to be the queue of all queues….snaking round and round the station with not a coach in sight…..🤐……more darkness….more shadows….

We suddenly realised Nick and Chiara were a few people ahead of us and Chiara took a tea and food order and trundled off as it looked like we’d be there quite some time….

When she came back with a welcome cuppa she suddenly had a genius idea…..could she advocate for me and ask them if me and Barbara could jump to the front of the queue because of my lanyard? Well in for a penny, I said anything was worth a try. If I’d have been alone, I would probably have gone looking for someone to help me, but because I was with others I just stood, not knowing what to do for the best, but knowing I was with them…..

A beaming smiley face came back and they’d agreed we could get on the mini bus that was about to leave…….how amazing and relief flooded through me and Barbara cos at least we would be moving….my lanyard worked in my favour yet again……..We trundled past queues and queues of people and I did feel guilty…for a nano second…

……couldn’t  believe it was a mini bus and not a coach, due to the hoards of people but guess they had to take what they could get!

I knew neither of my daughters were free to pick me up from anywhere but also knew at some point that Sarah would look at the tracker to see I’d got home……so half way to York there was a ping on my phone and it was Sarah querying where I was 😂🥴……..at least she could keep me company but I also knew she wouldn’t be able to sleep before she saw I was home……tables turned …as I, as a mum, used to be laying awake until I heard the key turn in the lock when they were out as youngsters….🙃……

We finally arrived in York 4 hours later 🤯😳 only to find the chaos still present, just a different station……🙈….luckily I was going east and I managed to catch the last train to Hull as no trains were going south via Doncaster……but I’d had to leave Barbara.😔

Someone later told me that everyone going to London Kings Cross had to catch a train to Leeds and then a train from there to London……🙈🙈🙈🙈🙈 I so hope Barbara found someone to help her…

Prof Jan messaged me to check I was ok….nothing anyone could do, I just had to not panic…so I spent the journey from York playing solitaire to keep calm……

Once in Hull I knew I’d have to get another taxi home as no more trains to Beverley….but…..luck was on my side for a change and as I took one last luck on my app before we pulled into Hull, I notice the Beverley train had also been delayed…..as my train pulled in so did the delayed train for Beverley…..

I finally got home just over 2 hours later than planned totally running on empty

…..but at least I got home. Sooooo hope everyone else did too…..🤞

P.S. Turns out I was the lucky one as poor Barbara didn’t get home until 02.30am 🙈😳😔

 

 

On the Fourth Day of Christmas what YOU can do for US…..

I’ve been asking playmates up and down the country….

What simple, practical, cheap tips do you have for OTHERS to help make it easier for YOU to be involved in projects, meetings and events?”

So today sees the  Number 4 window being opened…….

“Make sure we have a mobile number and keep in touch with us on the journey there and back, to make sure we’re ok….and ask how we’d like to be contacted…”

Travelling can be very traumatic for us and people often think we magically appear at events without thinking of the effort that goes into getting there. There’s nothing more reassuring when feeling anxious on a journey, than getting a txt from someone asking if you’re ok….or some people may prefer to be telephoned….but keep in touch. And remember, the journey home can be just as traumatic so don’t forget us…….

A Monday morning trundle to Durham……..

Yesterday saw me heading to Durham for a meeting with a project I seem to have been involved in for years……

After my wonderful weekend in paradise, all I wanted to do was stay snug…..and all I wanted to do was hibernate for the week, but luckily I have a full 2 weeks ahead. Luckily because, although sitting doing nothing is wonderful with dementia in tow, it’s also very bad…..

‘Doing’ is so important. Travelling all over the country, I call my Suduko, as it keeps my brain exposed to different environments and different conversations, but it is exhausting and at the end of each day I describe myself like a Duracell bunny whose batteries have run out…..

I hate it when I see people just sitting in care homes…..doing nothing……believe me, there’s nothing more comforting than sat doing nothing with dementia…sat with your eyes closed with no stimulation is HEAVEN…no stimulation to distract or test the brain cells….just silence and calm in the head…..but I’m lucky enough to know how bad that is for me. Because if I sit for too long I can feel dementia start to seep into my brain and my body and it hugs you and you feel suddenly safe in its grasp. That’s why so many people with dementia want to just sit. But that’s dementia cruel way of giving you that false sense of security that doing nothing is good when the exact opposite is the truth….keeping your brain and body active is my way of keeping dementia at not and not letting it win…

Anyway, back to yesterday….it was a freezing sunny morning and I noticed the familiar taxi arrive early and park up to wait for me. I’d actually got everything ready the week before. I’d typed all my talks for the run up to Christmas the weekend before and I’m so glad I did. I was on a roll a week ago typing, whereas I felt empty of words this weekend.

We trundled towards Beverley, passing the sunlit Westwood….

The trains started off delayed….and the information boards had decided it was too cold to work, so no one knew what was going on…but they suddenly sprang to life telling us of the short delay…luckily I had a long wait in Doncaster so no panic necessary…….the train had not got the memo to clean the windows so no piccie of the sunlit Humber this morning 🙄

I’m part of the Advisory Group for a Durham project called “Co-Designing Dementia Care’

My friend from Bradford, Prof Jan Oyebode is part of the actual research group along with other lovely people. Richard from NHS North of England Commisioning support always books my tickets for me and looks after me well.

I had a long wait in Doncaster so took a trundle inside shopping centre and saw this perfect sign…

The train to Durham was also delayed but only by a few minutes. It seemed to be rammed with Christmas shoppers and a group were in my seat 🙈…..I ambled up and down looking for another window seat as I knew many would be getting off in York……and I found one…

I arrived in Durham to find Jan and Chiara waiting and we were joined by Nick and Barbara, and it turned out we’d all been on the same train! …..we all piled into the taxi and trundled towards the John Snow House, passing these lovely Christmassy reindeer languishing in the middle of the roundabout…

We arrived to find the rest of the people waiting including Mariri who had flown in from Switzerland! There was a mix of people, local Director of nursing, commissioner and researchers…..the mix of people is one thing I like about this project.

We started off by discussing the proposal of an Out of Hours care improvement pilot. They want to prevent avoidable admissions to hospital via community care. The pilot will take place in the North West of Durham. They worked out that around £4600 will be saved per admission. Although Nick cautioned against the use of the word ‘saving’…..for me…. More importantly people with dementia remain in their own home.

The pilot will also be exploring the ‘real need’ that exists in the middle of the night.

They would employ 3 healthcare assistants and I asked what extra training they would receive? The Director of Nursing said how there’s a potential for the Admiral nurses to play a support role here.

By only avoiding 8 admissions, this would pay for the intervention so any more would be a bonus.

The next steps are taking it to the CCG (commissioners) to hear their thoughts…….

The next item was linked to the first and it was around Emergency Healthcare Plans.

They are documents to help communication in an emergency for the individual to ensure timely access to the right treatment and access……..

So they’ve done an audit of 50 plans to see if they’re completed correctly and then whether they actually work in practice….Gary Fry performed some interviews with a range of people including medics and carers . Most of the forms had been completed on transition to care homes……..and had generally been thoroughly completed.

Like every bit of paperwork stating our needs and wants…..they can often be cast aside and ignored or forgotten…..😔

We then went backwards on the agenda to Chiara on Project 1 intervention. A recognition of unmet need of information (usually of local services) for people with dementia and their supporters.

A working group suggested a check list, one that isn’t necessarily accessed but it needs to exist. From June this year, CPN’s (Community Psychiatric Nurses) have been handing out this leaflet. Ethics were then asked if they could interview people asking what they thought about the leaflet and they’ve only just got ethics approval so can now start interviewing people.

So the next step is to start evaluating the use of the leaflet….I said they should ask if people found anything new from the leaflet. They might have known something existed and the leaflet provided the contact details, but did they find anything new they didn’t know about. And I also mentioned the lack of financial support detail e.g. council tax. Goes back to my saying of ‘We don’t know what we don’t know”

But as Richard said, small comments like that can lead to the leaflet being updated regularly as it’s a living document.

Area 3 was next up after a short break……”The Dementia Reminder System”……….

At the workshop, supporters said how they were inundated with information at point of diagnosis. So they decided how a ‘reminder’ would appear every 6 months. The Gp practice will pull a list every 6 months of those patients with a dementia diagnosis and a letter and leaflet will be sent to each person.

The researchers will ask the practice managers if this happens and whether there were any issues. The local ethics committee has refused the researchers access to the people direct. So the researchers have to rely on the people contacting them, which isn’t good, but is out of the hands of the researchers – they have no control over anything.

I suggested adding a smiley photo to the covering letter…..

Dissemination……This has been a project which has lasted 5 years…..the whole point of this project was to work with stakeholders (Commisioners) to provide better dementia care. Jan was asking where we needed to diseminate…..locally they could hold a workshop with all stakeholders who have been involved, which could bring together the people with the dementia, carers along with commissioners and Healthcare staff.

It may have been 5 years since all this Action Research  started but this is an amazingly long time in Commisioner world but researchers always find different things happen along the way that change the aims and directions…..for example it was originally ‘Co-design’ in the title but it’s actually been ‘Co-creation’…..co-creation of knowledge design………

It’s enabled us to “Learn what we think is not what people want” said the Director of Nursing…..a nice way to end……..as my brain was shutting down …..

I do love Durham and can’t believe I didn’t take piccies of the actual meeting 🙈 only outside…

P.s….we got to the station to find rail chaos……but the chaos that followed and trundles in taxis and coaches deserves a blog all of it own tomorrow………🙈

On the Third Day of Christmas what YOU can do for US……

I’ve been asking playmates up and down the country….

What simple, practical, cheap tips do you have for OTHERS to help make it easier for YOU to be involved in projects, meetings and events?”

So today sees the  Number 3 window being opened…….

Remember, we eat in the evening, so don’t forget to budget for an evening meal if we’re staying overnight…”

So often we’re booked in for B&B somewhere….but what about our evening meal? For me, I often need to hibernate in my room as evenings aren’t a good time, so room service or I simply buy a sandwich to eat in my room. But don’t forget to check with us how we’re going to eat! Remember, many people with Young Onset have had to give up work; their partners may have had to reduce hours if they have one. Most speakers are there as part of their day job, so are getting paid for being there.  We should never be out of pocket but it’s amazing how often this is forgotten….

My muddle with numbers and dates continues……but…

Friday was a very special day as Gemma and Stuart were taking me to my paradise of Keswick for the Victorian weekend……..well that’s what we’d thought 🙄…..

I’d booked the trip months and months ago as Gemma has never been to Keswick but a Christmas trip swung it as she’s as bigger Christmasholic as I am…😂🤣,,,however…………..we hadn’t realised that those many months ago was probably when I started getting in a muddle with numbers and dates…..

For a start, I’d put it on my calendar as the 1st November, so definitely had the 1st in mind…but had booked our stay in Appletrees as the correct dates of 29th and 30th of November 😇……🥴

When I started getting excited the week before, I thought I’d just check the website for the Victorian Fayre……..😱🤯😳🙈……1st December…..starting at 10.30…when we had to leave at 8 to be back before Billys hotel closed at midday….🙈🙈🙈🙈🙈…….I double checked with Catherine at Appletrees to make sure I’d really booked our rooms and thankfully I had……but we won’t be there for the Christmas festivities ….the reason Gemma had agreed….🙄…..so how to confess in these circumstances …?…….well I decided Twitter was my best option 😂…..I put:

“If I confess via Twitter, will that mean I’ll be in less trouble….”…….🥴

Anyway, all was right in the Mitchell household and Gemma was just looking forward to seeing my paradise….

It meant Billy had to go in his hotel for 2 days and when I arrived he was fast asleep so wasn’t going to be impressed…🙈😂…..his hotel was actually closed but they’d agreed to open it just for Billy so he was going to be spoilt rotten, so me thinks his bad mood might change once he gets ensconced on King Billys throne 😂…..

We dropped Sir William off and left him sorting out his hotel room and off we set…….It was the most glorious day for a trundle to paradise…..with clear blue sky all around…

We stopped off on the A66 at the lovely farm shop there, only to find everyone and their dogs had also decided to take a break there 🙄….it had a lovely Christmas Cabin, which drew me and Gemma straight in 😂….deciding that queues weren’t for us, we got a cuppa takeaway Yorkshire Tea and some snacks for Gemma and Stuart and sat happily in the car for a few minutes before setting off for the final couple of hours…..

As we crossed the Penrith roundabout, the first sign for Keswick appeared and we were heading down my favourite road, passed Stainton, Pendruggan turn off and then Threkeld …..and then the calm washed over me…..the beauty engulfed me as paradise appeared….

We parked up, breathed in the air and took a walk down to my favourite spot

The Lake was so still, so calm that the reflections were crystal clear in the water…..

Gemma was being spoilt on her first visit. Even she noticed how clean and fresh the air was filtering easily through her lungs…..and filling them with loveliness…..her silence staring out at the water said far more than words. I think she finally understood why THIS is my paradise……

It was bitterly cold, but that added a newness to the beauty as I’ve never been there so late in the year.

We headed back to Appletrees to drop off our bags and my lovely B&B, along with Catherine the owner, engulfed us in a massive Christmas hug. Each room having it’s own sprinkling of Christmas sparkle.

It was getting dark so we decided to head into town to pick up my supplies for the evening. The town didn’t disappoint. We may not be there for the Christmas fayre on Sunday but the town was decked in lights and all things Christmas…

It had been a long day and we all ended up getting supplies for a snug night in readiness for our full day in paradise…….

We woke to find a beautiful white world had descended…….

After breakfast we ambled towards the river and walked alongside through Fitz Park, cheered by the sight of many happy dogs having their morning walk. Up one side of the park and down the other….

…..before trundling from one Christmas decked shop to another, buying things we never knew we needed….🙄😂……stopping for a cuppa halfway and playing trivial pursuits as cards lay in readiness to entertain on each table….a final push to the last shops before heading back to Appletrees for an afternoon snuggle before one last trundle to my favorite spot before it got dark……and we were greeted by an wonderful sunset to end our visit……❤️

An amazing 24hrs in paradise. Sooo lucky with the weather, crisp and white and sunny….before our long journey back Feeling refreshed and happy to be picking up Billy……..

On the Second Day of Christmas what YOU can do for US…..

I’ve been asking playmates up and down the country….

What simple, practical, cheap tips do you have for OTHERS to help make it easier for YOU to be involved in projects, meetings and events?”

So today sees the  Number 2 window being opened…….

Ask us what we need…What will help us to enjoy the day…..?

Everyone is different to what they need to have in place to be involved….never assume you know best, or what one person wanted will suit the next….simply ask us and keep asking us…..

Day 1 of our Advent Calendar …….

How can it possibly be December….😳……what happened to November????

Well all good Christmas’s start with an Advent Calendar and throughout December I’ll be sharing tips each day.

I’ve been asking playmates up and down the country….

What simple, practical, cheap tips do you have for OTHERS to help make it easier for YOU to be involved in projects, meetings and events?”

So today sees the start with the Number 1 window being opened…….

Hopefully you can read it but just in case……..

”When first contacting us, add your photo to your email signature or business card so we can remember and see who you are……”

You’ll get an extra blog each day with the next tip……

 

Christmas Countdown………

Starting Sunday……….!

 Sunday sees the countdown of Christmas and the start of #DementiaAdventCalendar. I’m putting the daily advent windows on Twitter but I’m also going to try and remember to put them at the bottom of a blog each day too……🙈

I’ve been asking playmates up and down the country….

What simple, practical, cheap tips do you have for OTHERS to help make it easier for YOU to be involved in projects, meetings and events?”

Well needless to say, I was inundated with suggestions, some I can publish, others might have to remain in my inbox – ha!

I had to whittle them down to 23…..why 23 you may ask…? Well 24 will be a special video made by me and my playmates at Minds and Voices.

HUGE than to the lovely talented Philly Hare for coming up with the magic design as I started to run out of time, was ill at the crucial point, so Philly stepped in and produced the image below that I would never have dreamed up. So all worked out well in the end….😂

Watch out for the first one on Sunday!

 And while you’re waiting for Sunday, take a look at this Christmas Video by Young Dementia UK, based on a true story……

https://www.youngdementiauk.org/