Category Archives: Education

A Venture down to London…..

So yesterday I headed down to London…….once again, we’ve not been told not to travel and until we are I’m hoping it’s business as usual and yesterday was part that….morning on, afternoon cancelled…..but it would mean I would get a trundle and get home far earlier than I was expecting so every cloud……..Sooo many events being cancelled that I’m having to make the most of any still on…….obviously if I didn’t feel well, I wouldn’t put others at risk, but I felt fine, I don’t care about me getting it from others…

Someone kindly managed to get me a pocket size hand gel sanitizer so I was all armed to make everyone else feel happy….just to make you all fell happier, every time I think I used it I’ll put “(gel) in the blog 😂 A Gp on Twitter had even offered to send me some in the post! How kind was that ☺️

I was heading down to meet up with the lovely people from Young Dementia UK to discuss the Angela Project…….The blurb about it says…:

The Angela Project is dedicated to Angela who was recently diagnosed with dementia at 51 years of age. She had symptoms for 3 years before getting a confirmed diagnosis. Many other people experience delays like Angela.

 Our Aim is to improve diagnosis and post-diagnostic support for younger people living with dementia and their caregivers”

 So a wonderful project, and I actually think I was a participant in one stage…🤔………

I’d been emailed from Tessa, who heads up Young Dementia UK, saying how it was fine not to attend if I was at all worried…….well, if they were going so was I 😂…….and as Tessa said after my response:

“I thought you might think like that……..”😂

Anyway, I woke to a beautiful light morning…

First time I’d noticed how early it was getting light! 6am and the sun was shining….how wonderful….Spring is on its way..

A lovely cheery taxi driver was early and said how she’s just sent her friend a txt, then realised how early it was 🙄 oooops….(gel)

The earlier train was also in the station.  I had to change at Doncaster, so I thought I might as well sit on Doncaster station for a bit longer so wobbled on(gel)…….I’d have an hours wait there instead of 15 minutes, but would trundle on a nicer train with ‘tinternet’ which would allow me to sort myself for the morning……

After all the recent dull grey rainy days it was lovely to see the sunshine again. It always makes me smile, Mr Blue sky setting you up for the day…..seems ages since I’ve trundled past the windmills and how beautiful they looked………can’t remember when I last went to London, must be a while…🤔

I’d had a debrief with my daughters about the trauma of the PIP assessment the day before and we all agreed there was nothing we could do now but wait. But it’s amazing how the thoughts of it flicker in and out of your head……😔

I was determined the day would be a nice day as I would be seeing such lovely people.

I arrived into a sunny Doncaster, got a cuppa (gel) and sat in the waiting room (gel), playing scrabble, winding my brain up for the day, and watching the people come and go…….(gel)

After an hour, which flew by, I boarded my train (gel) and arrived in London late as usual ….🙄 (gel gel gel )

So I was a little late but after a short tube ride (gel gel gel gel 🙄)still found time to take a piccie of the skyline…which I love around Aldgate….

I arrived at Dementia UK offices (gel) and found Tessa, Kate, Janet and Jan waiting for me……and a cuppa tea appeared…..we were soon joined by Hilda (CEO of Dementia UK and who kindly lets us use their offices) and Jackie….

Jan started…..I’d been least involved and was invited to tag along today to give my five penneth of views…..the project finshed at the end of December ….so now they’re busy producing academic papers…so we were here to discuss the next stage, collaborating to think about how we can turn findings into useful resources that can make a difference in practice…make a difference to the diagnosis process and the post diagnosis process….

This first leaflet is accessible and available for professionals and people affected by dementia…but it’s just the start as so much useful information came out of the Angela Project that we need to ensure it gets out into practice…you can download a copy via this link:

https://www.youngdementiauk.org/angela-project

We need to make sure it gets far and wide……so please have a look….Kate had it on her laptop, so I took a quick piccie…..

The ‘organiser extraordinaire’, Kate, has produced a check list for making sure the process runs smoothly….so we’re working on a promotion plan via the Young Dementia Research Network….

We were talking about the cost associated with providing hard copies free of charge and where that money would come from….dissemination and implementation is sooooo important in research and often neglected. But we’re wanting to make sure all the useful information collected IS disseminated and implemented ….

We need to be efficient as possible but time and resources are always limited and Young Dementia UK is very small but perfectly formed and so good at what they do….

We moved onto to discuss other resources other than the leaflet currently available……we want to produce a ‘living care plan’ or ‘living life support plan’ – don’t think we’ve got the name quite sorted yet….…..Clare Mason at Bradford has been consulting professional people, to see if they would use this living care plan or what would need to change – do they think it would be valuable, what would they like to see come out of the evidence that has come out of the Angela Project ? So for example, their local Bradford Dementia Strategy Group were very keen to trial it, made up of many different specialties………. But then also ask people living with Young Onset dementia too…of course!

I said it would interesting to see what professionals thought we needed as opposed to what people living with dementia say they need…..

We all said it had to be a flexible template to be adaptable for every individual….so we have to have a core range of essential elements…that can then be adapted for individual needs….

The experience through the clinic, is another step –  what matters most to people receiving a diagnosis…….?

It’s wanting to link a gold standard clinical diagnostic process along with a personal, ‘what matters to us’ during that process…it’s no good providing a step by step clinical process on diagnosis  if it doesn’t involve the holistic experience of the people being diagnosed. Is the environment right, is the right language used etc etc……

They’re also wanting to produce something for Commisioners ….so over the next 9 months there will be much activity…….very exciting times and the evidential outcomes of this project could make such a difference and change the whole experience of being diagnosed, and then post diagnostic care, which is very poor at the moment. However, during the research, some people did relate to having had a good experience. The areas they came from didn’t surprise any of us….so it’s harnessing these gold practices with “what matters to people going through that process’ – how magic would that be……

Lunch arrived (gel) and I found out that I misunderstood the length of the meeting …..there were people Skyping in after lunch but I had to leave as I’d booked my taxi in Beverley to pick me up from the 2.30 train 🙄………but it was sooooo good to get out and about on a train once more and down to London….

I realised on my way to the tube station that I’d not taken a piccie of all the lovely people🙈,,,so took a piccie of the blossom in the sunshine instead

I had to find a smiley face at Kings Cross station as I was originally booked on the 17.30 train. But the smiley face took me to the next train, warning me that they hadn’t been very co-operative lately 😳…. it was an earlier train so would have been cheaper and less crowded than my rush hour one….so why wouldn’t they in my little mind..?

 She waited with me, then the guard appeared. She explained my situation, I smiled my biggest smile and made sure my lanyard was on view. They couldn’t have been more lovely and helpful and I settled down on my earlier train to home (gel gel gel)………sometimes kindness costs nothing yet means so much……

A lovely trundle to be with lovely people….wonder when the next will be as 3 days have already been cancelled next week….🙈……

p.s did I use enough gel for everyone 🤔😂 especially my daughters…🙄

 

A visit to Bradford Hospice……

Yesterday I was invited to speak to staff and volunteers at the Marie Curie Hospice in Bradford. Frances Glover, the Volunteers coordinator had asked me before Christmas if I would talk there and also chat to the team about a proposed dementia garden.

I was glad to see I’d woken to another sunny day (two in a row!!) after my trundle of Monday capturing the beauty around me. I’d never seen the Minster in such detail but I was pleased with this image….


Amazed what you see when you zoom in from afar, balancing the camera on a branch To keep it steady 😂 must have looked very funny….

The taxi driver was early and caught me on the hop, but he waited patiently and let me get my act together. He told me how he’d been to Bradford airport early in the morning, and there’d been snow 😳 so hopefully by the time I get there it will have disappeared…🙄

Once the first train got to Hull, I made my way to the ticket office as Hull station along with Northern Rail and Transpennine have now adopted the sunflower lanyard scheme to identify invisible disabilities. Now I know this has been a contentious issue in many arenas – saying, why should we have to wear anything to identify need – but for me, it simply makes it easier. If I’m in need of help, I don’t want to have to spend time, when I’m probably in a pickle, explaining why I need help. The lanyard does that for me and has worked marvellously.

In the office the man immediately knew what I was talking about and gave me 3 options, a lanyard, a pin badge or a ribbon. So people can be as obvious or discreet as they like…

I popped into the station café and even they recognised it and after glancing at my lanyard asked if I needed help taking my tea to the table…so some things are changing…quite a refreshing start to the day……..

Thankfully the Humber was looking calm and friendly after all the recent storms and rain

But as we trundled further east, the ground became wet and the skies were grey…🙄

Arriving at Bradford, I got a taxi to this new destination…..not knowing how far, or how long it would take. The entrance surroundings were high security with fences and access gates, then access doors, but I eventuallly worked out how to get in. I was early so expected a wait….it was strange, but it didn’t have the calming friendly feel of other hospices I’d been in. Think this was down to the design of the building rather than the people who seemed to be rushing around. No one made eye contact or smiled.  It had felt like I was entering a secure unit rather than a hospice. The reception area being very closed in with no friendly light….felt strange…🤔…and uncomfortable…

But Frances came out to meet me almost straight away and took me up to a much airier room ….numbers would be a mystery as a lot depends on staff situation and patient need, obviously……so it lay waiting and ready and I typed away, Frances having left me with a cuppa and logged into their WiFi….happier bunny……

The room began to fill up and soon it was full with smiley faces, with extra chairs being found and time to start…….there was a mix of volunteers and clinical and non clinical staff……..

I had 50 minutes to ramble on about anything and everything and then 10 minutes for questions…..I covered all my usual stuff including language, body language and facial expression of professionals, how it can make or break us, environmental lies, how feelings take over from detail and told them to :

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

Lots of questions afterwards, but I wasn’t typing so don’t know what they asked. I’d taken books to sell and those in the queue asked extra questions, which is always nice.

I’d forgotten to ask for a piccie with everyone 🙈 but luckily Frances asked if I minded having one with the few that were left..So at least I got some of them….

As everyone left, a man came in who is responsible for designing a new garden and asked me various questions. I said how getting it right for people with dementia would lead to getting it right for so many others………..

I’d entered the building feeling unwelcome, people passing by as I sat waiting but no one smiling or saying hello…but by the end there were smiles, friendliness  and chatter….what a difference a few hours makes….

Time for my train and Frances ordered me a taxi, but then someone else appeared, who’d already booked one. She’d come down from Newcastle to see me….🙏🤗 so we shared a cab to the station and chatted more…….before going our separate ways……and as I waited at the station the snow flakes began to fall once more….🙄

 

Could students raise my spirits……..

After the trauma of Monday, I needed something to lift my spirits yesterday and if anyone could do it, it was students…….I don’t normally let things like this dwell in my head but the PIP process isn’t just a one day event…it affects you from the moment that brown envelope drops through the letterbox. That sinking feeling of doom and trauma….but today is another day and I was so hoping the students smile at Bradford University would bring a smile to my face….

A lovely sky welcomed me as I stood looking out of my morning window…

I was heading for Bradford to the Doctoral Training Centre (DCT)  to have an update from all the Phd students that I’d been following from their first day. The DCT is one of the things the Alzheimer’s Society have got right. The students are funded by them and I was there as a Research Network Monitor today.

I’d be seeing the lovely Sandra and Barbara along with other wonderful people at Bradford so my hopes were high for a happy day.

I saw the taxi driver slowly pass my house and guessed it must be someone new, well he was to me. He wasn’t the talkative type and insisted he’d been with them a year so we trundled along in silence. I often wonder if people are feeling sad, shy, or just don’t like to talk…..no one knows what is happening in peoples lives to make them as they are in that moment.

Once at the station, I checked with my smiley face at the taxi office, that I’d booked a taxi home and then joined the morning commenters into Hull…I’d set alerts from the train company so that every time I travel, they send me a txt to tell me what platform and whether there’s any problems…..wonderfully helpful.

The first train was on time into Hull and we now have a direct train from Hull to Bradford, so I don’t have to change at Leeds! I know it’s probably not, but feels like a long time since I passed the Humber in sunshine…

Sandra was due to pick up my train in Leeds and had txt along the way. Me thinks it must be half term as the carriage was full of excited children….well 4…but sounded like a whole carriage full 😳😂…so I went into my own world of playing solitaire…..

Leeds came, the train emptied and I saw Sandra wave at me from the other end……after hugs and a catch up we’d arrived at Bradford and made our way up the windy cold hill to the Uni where a cuppa tea was waiting……

The students started to arrive and the room came alive with chatter…..before I knew it, Barbara called us all to attention and we started…..by introducing ourselves…..there were students, their supervisors and a visiting Professor Myrra for the Netherlands…

We had an hour for oral updates from the students…..

Paul was up first…investigating how people with dementia manage their medicines at home and the role the community pharmacists can play. He wants these questions answered….how people with dementia manage their medicine?, especially the implications of living alone or with different types of dementia. How community pharmacists support those people and what should be the way forward…..

He is organising focus groups and follow up interviews in their own homes, taking photographic evidence of their routine. Next would be a focus group with community pharmacists who would see the photographic evidence from the first group so they could see the strategies they use or not……he’s still at the ethical approval stage, but is now close to achieving that

It became apparent from Paul and from other comments from the students that the ethics process is difficult…….

Akhlak was next…….he is looking at the step changes in caring for someone with dementia at home in the South Asian community  – is there a role played by gender? Does Faith play a role? He has had challenges with recruitment due to the stigma associated with dementia in this community. He’s found you have to have trust and rapport with people for them to talk to you so building trust has to start before any conversations can take place….Intergenerationally there are also differences of opinion . Akhlak said some really interesting and practical things around Faith and the part faith can play in South Asian communities…..how for some it is extremely importantfor and for others, not so. Stresses the need to look at what’s important to the family that can help…..

Angela next…..looking at transition between settings of Hospital and back to Care Home, so exploring the role of the nurse in hospital and the nurse in a care home when the person leaves hospital and goes back to the Care Home. She’s spoken to Care Home nurses and hospital nurses.

She found it sometimes depended on the type of ward the person with dementia had been on. A short term ward may not have the time to spend on connecting with the care home in detail. She found too many variables affecting the result…..and found the challenges lay in the release of the nurse from the ward to be able to speak to her.

As Sandra said, the variables must explain the inconsistency in care and transition from hospital…..it also depends on the individuals experience of working and understanding the needs of people with dementia….

The communication between hospital nurses and care homes nurses seems to be a barrier to the creation of a good transition…..Nurses in hospital rarely start off working in a Care Home so have no understanding of the needs……they don’t see each other as equals.

Helen was last before lunch……she was looking at Women Living alone when diagnosed with dementia and the things they developed not to go into a care home. She looked at it from a feminist point of view. When she tried to find people in Care Homes that had lived alone, she met lots of gatekeepers…disempowering people with dementia. She felt it was to do with being a black woman. She was met with a lot of resistance and prejudice. The participants she did get were all from word of mouth and not from organisations….they were all living alone when diagnosed.

All the 4 participants lived alone before they were diagnosed and it’s how society can enable people to remain in their own home…..

The 4 participants surprisingly didn’t speak about dementia. They spoke about other co-morbidites. They all stayed in their home with support. All varying with different types of support. Some had minimal support. One had her family move in with her and she was able to still socialise…whereas those who just had someone come in to do cleaning, the laundry etc, simply felt old…..

Four fascinating and important studies……

Lunch time and time to chat and catch up and take a piccie of the 4 students


Paul, Angela, Helen and Akhlak

After lunch Murna spoke about the future of the Doctoral Training Centre…there are many other Phd students who aren’t funded by the DCT…..they are seeking funding through other areas for the other opportunities to appoint other PHd students. However they want to continue this model of having a twice yearly meeting with ‘the family’ that is us……it can be very lonely being a Phd student, said one. I said:

“It’s also very lonely living with dementia and caring for someone, and coming together with students is like a hug from them knowing that they care enough to do their research, seeing the passion they have for their subject and desire to change practice but also the students receive a hug from us knowing that what they do is appreciated – it’s a win win…….we help each other.”

As Sandra said….there needs to be a helicopter view of all the interlinking that exists between each project of our DCT students…all the different transitions….we spoke a lot about the challenge of what happens next……to me it’s the duty of the Alzheimers Society to fund evaluation of the interlinking in the form of a grant to enable them to produce a paper which would be invaluable in showing the connections between all projects and lessons learnt…

Students have such hardship when their funding comes to an end yet life has happened, unexpected breaks have interrupted the process. But also there has to be an acknowledgement that social research is very different from clinical research as it’s involved in ‘the now’, what’s happing in society now.

The students here are also from clinical practice…..the easy option is to go back to the their clinical world and leave research. Admittedly they would take back a better understanding to their clinical world and change practice, but short term contracts and access to roles in research aren’t an easy route. Their projects need to be implemented…..but they rarely are and is very frustrating for them and us…..

We could have carried on for hours, but we had to stop and have the Monitors meeting with Murna, Jan, Sandra, Sandra and me….we sat for half an hour chatting about the students and clarifying what we needed for our report. Sandra Duggan offered to write the report this time……

We all agreed on the value of lay panel, like ours, to support the students through their studies. We can show them the reality and why they do what they do is so important for people living with dementia………brilliant day and yes, after the trauma of Monday, they did make me smile…..

 

Day 2 in London – Dementia Enquirers….

It was a night of sleep, wake, sleep, wake….my eyelids firmly closed in exhaustion from the day but my eyeballs wide awake and staring into blackness…..we’d had a lovely meal the night before, a meal of sharing wonderful stories, sadness, laughter and everything in between …can’t believe I didn’t take a piccie!

My eyelids finally secummbed to the mischievous eyeballs behind them and opened for the day. Showered, I settled down with a cuppa to go through my morning routine – solitaire, scrabble and my new found friend ‘Wordscapes’….just as an extra when my friends have yet to take their turn at scrabble…..

Philly knocked for me at 8 and we went down for breakfast before the start of another heavy day…..but at least my head felt better…even without sleep……🙄…(that’s dementia for you – just no telling from one day to the next)

Over breakfast we had a wonderfully emotional and passionate discussion about Personal Independence Payments (PIP) as I have my next onslaught starting into the system on Monday. The distress and emotional turmoil this is causing for people is beyond comprehension so we decided we need to do something…..Philly wished she taped that conversation as it was so off the cuff so filled with detail from each of us……..

Packed and ready, we met in reception and trundled to our venue for the day…the same lovely one as yesterday…….

Today it was the Pioneers meeting. We sat chatting while we waited for Mhari and Hugh…….we were in a different room today, a smaller one. It was Georges first meeting as a Pioneer and Mhari and Hugh had travelled just for the day.

I asked for a piccie while we were all relatively fresh

Philly started off telling us the plan for the day ..and then briefly spoke about yesterday and the ethics of research and what we might do differently. We will come up with a simple ethical framework to share with the next lot of grants and ask them how they’re meeting our ethical framework…..

We sat and discussed the make up of the panel and agreed we need an academic to sit and advise us but with no vote….someone with expertise in their field who would be happy and understand their role as an advisor ……

We, as pioneers, all volunteered to be on the panel and discussed which academics we trusted to work in the way we needed and who we thought might be prepared to work our way……

We’ll combine ethics and decision making for the next lot of applications for research from people with dementia at our Pioneers in our Woodbrooke meeting in June…

We decided we would call ourselves DEEP Ethics Panel…..this is the start of a much bigger piece of work which will inform the more formal ethics committees and hopefully change and question current processes…….

We stopped for a cuppa and cookie……and moved on from ethics to the 10 new projects that will get funding in June.  Groups of people with dementia from the DEEP Network, deciding what they want to research and applying for a grant.

Today we wanted to discuss the process we had last year and what might needed changing after the lessons learnt from the past year….not that we could remember, but that’s why our ‘able enablers’ are there…..😂

We had 10 decisions to make….so Philly had to keep us on track and crack her famous whip 😂🤣

We went through the list of ideas of what it means to be ‘in the driving seat’ of a research project….the guidelines we expect groups to follow when conducting research while realising that everyone’s contribution could be at different levels of ability…..

Much conversation took place around emotional decisions and factual decisions

We had a quick break then the final session before lunch. We came back and Philly asked me to read my blog about yesterday….which was as much a surprise to me as everyone else!

Philly then fed back how they’d received the numerous emails from the ally academics who attended the first day. They were all full of passion, full of enthusiasm and hope for what we were doing….we know some academics would want to be involved for the wrong reasons, but those allies seemed to get it in my opinion. We all have our different opinions….

We had offers of support from them….many academics find the ethics process difficult and someone suggested finding out from researchers themselves what they find difficult that may help us in our campaign to change the process..and highlight the changes needed.

Before lunch the final item was around an idea from Pachael and Philly about using money still available on a project on Power and Control and what barriers exist from us having control over our lives……we came up with loads of ideas…..lots of food for thought……

Which brought us nicely to lunch in the café…….and me and Rachael had a lovely Celeriac and mushroom soup and warm bread….🤗 hug in a bowl……

We were the only ones in the café….a lovely café with lovely people serving lovely food……a great find of a venue….and they had pictures on the wall, some of them depicting the music of The Beatles…

 

We made out way back for our last hour  before the end of the day…..

For the Funders, the National Lottery, we have to write an ‘engagement plan’ ….who we want to engage with and influence as the National Lottery want to help us…….we obviously want to engage with academic researchers, engage with Universities, with conferences where we can influence a change in views…..

The last idea was around an article for a journal…..Disability and Society journal….

Our final discussion was around the Event in May to celebrate the completion of the first lot of projects…..each of the 10 groups are invited to share their successes and challenges….and hopefully the funders will be there….

I said we needed to end the whole session by having everyone leave with people saying…..”WOW! What’s next??????”

Our last task was to record a sentence about how we feel Dementia Enquirers is going and I said:

The seed that was sown over a year ago, is now growing into a youngster and you can see the adult developing and gaining character. I’m leaving this last 2 days exhausted, but once again full of renewed enthusiasm for what’s still to come….”

 As Agnes said “My tired is even tired….But it’s nice to feel tired and have achieved something…..”  And off we went our different ways home………the days a blur already…..

 

 

Another trundle back down to London….

A busy week travelling this week so yesterday was another trundle down to London but this time for 2 days…..

It was going to be 2 days of full on Dementia Enquirers with the first day taken up by an Ethics discussion – the issues for people with dementia and ethics committees, the barriers we face and possible solutions…..

The second day would be a meeting of the Pioneers – agreeing a process for the next lot of grant applications…..so 2 heavy but fun packed days with playmates, and our able enablers, Rachael and Philly.

Anyway before the start I had to get there…..a silly o’clock start again as I’d decided against staying the night before due to being in York and I prefer travelling on the day and staying just one night. I’m also not keen on travelling at night, which is what I would have had to do on this occasion. I find travelling in the dark disorientating but in the morning, it eventually gets light which makes it more possible.

The taxi people had asked me the night before if I could be ready 5 minutes earlier so at 05.40 this morning I was ready and waiting with my suitcase and the taxi lights appeared. It’s often a quiet trundle at that time in a morning as neither of us are quite awake. It was all going fine until we got to the station, then I realised why they’d asked to pick me up early ….because he had another run for the same train straight after. He started to rush me and rushing me never works. I hadn’t been organised so didn’t have my money ready, so fumbled about dropping coins and getting in a pickle 🙈…I don’t really know how much I gave him and then must have dropped my glove when getting out as I realised I had one cold hand as I stood on the platform trying to get myself back to normal 🙄…..I’m fine as long as people give me time…….but, of course, when others are in a hurry, they forget that…..

The train was on time, I got my cuppa weak black tea and everything was ok in the world again……it was a very busy train though and agitated passengers trying to find seats and arguing with staff made for a stressful journey on an already discombobulated day…..I didn’t feel right, so instead I tried to disappear into my own world and look out of the window …

Soon the daytime appeared making it a much friendlier world….

I got to London in plenty of time to find this new venue….so went for an amble first …..and ended up leaving my stick somewhere 🙈….I’d had my suitcase to balance on so hadn’t noticed until I went to swap hands…so I had to retrace where I thought I’d been. Turns out I had left it in a shop but they’d taken it to lost property 😳…so then had to find Lost Property, then they wanted ID, and to fill out a form 🤯🤯🤯🤯🤯🤯 but they saw my lanyard and decided I wasn’t a risk and let me have my stick back🙏🙄

Because of the stick panic, I was then in a bit of a pickle about being late and ended up getting lost🙈 and Google took me through a housing estate🤪😱…….went the wrong way …but then I spied a sign on a building in the distance – Lumen, my destination. Playmates were there so much appreciated hugs were given all around…..I went outside into the courtyard just to settle my head…

We finallly started and Rachael and Agnes were chairing the day. We went round and introduced ourselves. Today we had many people there, including playmates and academics who had been invited to help us, from a variety of Universities…..

Rachael whizzed through quickly saying what Dementia Enquirers is – people with dementia leading reasearch from the front on subjects WE think important to research. Along the way it’s hoped that people with dementia will learn new skills, such as around ethics today…..

Dory introduced the ‘Jargon Jar’ to emphasise the need to use plain English otherwise you have to pay a fine. I said “or you can write us a cheque at the end’….🙄😂

There’s a barrier around ethics approvals for our projects – do we need ethics approval? And if we do then there are so many barriers to achieving this. But can we create a new system that’s quicker, a more urgent way.

Tom Shakespeare said the problems are that the ethical process is difficult and complex for the professionals so for those with cognitive difficulties it’s even more complex.

Publications will ask where did we get ethical approval…..or won’t publish, so that’s another barrier in having our work taken seriously.

The Pioneers then spoke about the issues ……mine was:

If we can influence ethics committees to see our ability differently – to see our un- vulnerability as they are always trying to protect us.It will dispel myths around our capabilities”

 We want to create our own system, our own ethics process….”The University of the Dementia World” as Agnes said. But as Tom said, we still have to follow certain laws.

 The academics then responded. Someone said there’s a cultural problem as even Junior Researchers have problems when needing extra support and help.

If we create our own ethics process, will it be considered as something to take seriously?

The more noise we can make about being disempowered, the better”…….said academic Lucy.

There were disagreements and voices raised in the room, but we all have respect for one another and could listen to each other’s opinions. We were hearing the frustrations in peoples voices about some of the current systems. I started to get confused as to why we were here and getting a bit discombobulated but think that was just me and my brain on the day…..

We finished off before lunch with what we need to consider to set up our own ethics committee …..working in pairs, one person with dementia, one academic. I was working with Tracey from Worcester Uni. I found this head blowing just to understand what I had to do…….the conversations going on around me made my head buzz. Took me a while to simply understand what I had to do and Philly came along to help and then Tracey tried to help and eventually I could do enough to contribute, but not to my usual standard…..just not a good day for me…Tracey drew the short straw getting me today! 🤪….

Philly went through  all the post its trying to gain a consensus….no easy task!

More discussion followed….on what this process, committee would look like, building trust between people with dementia and academics…but it was time for lunch and a head break…….

After a lovely lunch where the chatter continued……Agnes started off the afternoon to help us create an ethical approval process with people with dementia leading…..

 We had to list step by step what would need to be in place……again Tracey drew the short straw and had me….🙄……but we managed to get through it before the discussion took place.  But in between Agnes did a wonderful relaxation 5 minutes….and then we continued with the last hour….we each fed back what we’d come up with which put altogether was very comprehensive…..Dory’s group got a brownie point for suggesting a 15 minute video to play each time to help us remember what we’re doing and how.

someone said, at the end…”it would have taken others many months and many more meetings to achieve what we achieved today” but they have one thing we don’t…..time…..

There were lots of different opinions in the room and Agnes and Rachael chaired amazingly …….but as Agnes said

We rise above our differences to get an outcome” ……..a good way to finish an intense but good day…….and all I wanted was my hotel room and silence…….

 

Speaking to Mental Health Staff on their first day………

Yesterday morning felt a tad strange….it would either be the calm before the storm, the calm before a wonderful mini adventure, or the calm before utter disappointment, but more of that later…as I can only think of one thing at a time…🙄…..

So it was the second time I’d given a 30 minute talk to new staff in the Humber Mental Health Trust on their first day…..each month I’m now part of the new revamped Trust Induction, which is wonderful. Last month was the first time and apparently went down really well, so yesterday, time would tell how many new starters there would be. They’re from all specialties so a real mix bunch.

I follow Mandy who is head of Patient and Carer experience. Katie, from the research team was picking me up and arrived dead on time as planned…..so we trundled our way to the Trust Headquaters ready for a 1.15 start…….I was sooo surprised to see Hydrangea in flower! They should be brown and dry this time of year….😳🤔

We walked over and were met by the organisers. Mandy soon arrived, my partner in our hour long talk..

There must have been about 40 new starters sat waiting…….Mandy started off first and  spoke of how it’s important to identify the ‘carer’ of patients as they need looking after as well. How many people don’t consider themselves as ‘Carers’ as they are ‘husbands’, ‘wives’ or simply children or friends……so it’s important that no one drops off the radar simply because they don’t consider themselves ‘carers’…….

All the ‘houses’ on the slide represent a way people can be involved…..difficult to read, I know, but I just liked the slide 😂

There are many forums that people can be involved in at the Trust, staff, patient and Carer and Humber Co-Production Network….back in 2017 there were only a handful of staff champions, now there’s over 100 showing the importance of having patient and carer input into each and every department..it’s certainly not pink and fluffy

Staff need to be aware of how patients and carers can get involved in Humber…patient and carers need to be involved in recruitment in every area and consulted right at the very beginning of a project., not at the end….this is being implemented throughout the Trust…

Co-production should be at the heart of everything we do…”

On the Trust web site there’s an ‘orange headphones’ tool bar which can translate leaflets and anything on their web site into over 100 languages automatically….brilliant!

Mandy finishes with a lovely film which showed the importance of all Mandy had been talking about…..working with patients and carers isn’t a luxury…it’s a necessity….

My turn next….

So 30 mins in which I talk about my story, senses, language, body language, the stigma that exists and ending with research involvement….

“If you don’t think research affect you, you may change your mind if you or someone close was given that devastating diagnosis of Dementia….”

It seemed to go down well and waiting outside was Katie to take me to Hull station. I suddenly felt totally exhausted and looked forward to just sitting on the train admiring the views before me. I was heading for Edinburgh before taking a flight on Tuesday morning to Stornoway, on the Isle of Lewis in the Outer Hebrides ……did I just say that 😳…….?

The only problem is, it’s all reliant on the weather as to whether the plane takes off……so by the time you read this I’m hopefully nearly there or I’ll be having a day in Edinburgh due to it being cancelled…🙈

The sky over the Humber was a peaceful greeting

Before I realised that I’d be travelling up the beautiful East coast in the dark 🤦‍♀️🙄….

More of my mini adventure over the coming days…….keep your fingers crossed that I got there!

A WOW day with Ward Leaders at Portsmouth Hospital…..

I was invited by Debbie Knight, Head of Nursing and Midwifery Education to talk at the Ward Leaders day at Portsmouth Hospital. We’d met virtually via Twitter as their Book Club had recently read my book and they had a ‘chat’ session on Twitter and asked me to join in which was great fun……

So at silly o’clock on Wednesday I found myself trundling the long journey across to my friends in Trowbridge ready for the shorter journey Thursday morning to Cosham, where the hospital is based.

I’d set my alarm the night before for 5am, ready for the taxi to pick me up at 05.45……well I thought I had..🙄….I’d certainly set my phone to 5am but luckily I opened my eyes, looked at my phone and it told me it was 04.57…..and for some reason I decided I’d simply get up instead of waiting for the alarm to sound. Went to switch the alarm off only to find a grey switch staring back at me instead of a lovely shade of green, meaning I’d actually forgotten to switch it on 🙈………luckily the chaos that would have happened was averted and I went about getting into the shower……

It was one of the new Hull Trains that pulled into the station……seems like they think passengers no longer need their old lovely convenient luggage storage spaces to slide your suitcase in at ground level and now state they have overhead storage for medium and large suitcases…..Which I couldn’t possibly manage….🙈……so I had to park my large suitcase in the disabled bit in the hope that no one in a wheelchair needed it……WHY…….?

The obvious route is on the Cross Country Train avoiding London , but these are my least favourite train company and their prices are extortionate …….so for a 20 minute longer journey, one change at London instead of 2 on Cross Country, I went first class and it cost me £100 less than their standard class …….🙄 I know London, I’m happy on the trains so a no brainer…..so there I was trundling in the darkness at the start of a 6 hour journey to London first……good job I like trundling….

It wasn’t until we got to Grantham, half way, that the sun started to wake….

The journey actually went quite smooth…😳

Anyway back to the reason I was there…….after a lovely overnight stay with my friends, it meant a shorter journey (90 mins instead of 6hrs!) and a decent start time to Cosham…it was a dull drizzly day and of course, we were met by the dreaded ‘Delayed’ sign as we reached the platform. I txt Debbie eventually to say we’d left 15 minutes late and I had left in plenty of time so no panic necessary …….

I managed to get one piccie before the drizzle became a downpour……..and put paid to anymore sightseeing out of the window….

This was a totally new route through Salisbury, Romsey, Southampton to name three before arriving at Cosham, my destination for 24 hours…..

Debbie kindly kept me company by txt during the journey as I didn’t have a clue where I was but she was tracking the train, giving me updates, which was perfect and much appreciated……

Debbie, as promised, was waiting outside the station and we trundled the short way to the venue they use for staff events nearby the hospital. By pure chance there was also a Dementia group going on!

We sat outside the lunch room and chatted about this that and everything and then Debbie said how the hospital is just rolling out Allocate Roster Pro system, which was a real blast from the past as that was the very first roster system I worked on in my NHS Direct days…..they’ve only just got it.So how amazing that something I was involved in from the start, 15 years ago, has just been rolled out here………

Anyway, we went into the room and waited for everyone to settle. I’d been given an hour so I spoke about language, experiences, the hospital environment, environmental lies, the senses and much much more, including:

We’re often referred to as ‘Challenging patients’ but I refer to challenging staff. There’s a reason why we’re distressed and it’s up to you to find that reason. You need to enter our world as we simply can’t enter yours….”

 I always finish reading the Billy extract from my book as the time I’m given can bring out many emotions in people. So I like to end by making them laugh to release the tension…..

Sooooo many questions at the end. I can’t remember many but do remember them asking about environment, language and how it affects my daughters. Such wonderful questions. They then agreed to a piccie…

My suitcase was a lot lighter to take home as they bought all the books I’d taken afterwards, but the next speaker had arrived, so me and Debbie went and sat with a cuppa and were joined by 2 of the book club, which is where our relationship started…..and had a piccie…..

It was a wonderful end to a wonderful day. Debbie had supported me perfectly, even taking me to the hotel making sure the room had all been paid for and that I was happy with everything before taking her leave to continue on her long shift…..sometimes I just feel very lucky that dementia has brought all these new opportunities….well every cloud……..

 

Audiologist check up………

Yesterday I had my first check up for my hyperacusis and hearing aids….I’d had to cancel one appointment before Christmas, when I was busy, but it was a welcome distraction during this quiet time.

Having hyperacusis doesn’t mean I’m going deaf, I’m simply sensitive to certain tones of noise, as are many people with dementia, but many just don’t know why…the hearing aids are simply programmed to block out the ear piercing tones which affect me.

I havn’t had to wear my hearing aids for weeks as I havn’t been anywhere noisy. I never wear them in the house as it’s just me and the silence of me tapping my keyboard…..

It was also the first time I’d had to set my alarm as I had the first appointment of the day at 08.45 and although I’m not asleep, I lay with my eyes closed relaxing, and this period of quiet has led to no reason to open them. It came as a shock when my phone signalled getting up time. The routine of ‘going somewhere’ specific long forgotten…..I followed, what I thought was routine and all was well. But then I went to put in my hearing aids………blue for left and red for right…..or was it red for left and blue for right….? I didn’t have a clue. I’d cracked it before Christmas so never thought about forgetting something so simple. I closed my eyes and simply picked one up after the other, not knowing if it was the right way round 🙈

I saw the taxi man pull up, went to the door, but my keys weren’t in the lock. I usually put them in the lock when I come downstairs, but this mornings different routine had obviously thrown me out without me realising. I couldn’t think where they would be….a slight panic sending waves through my body…..I went round and round in circles for a while before heading upstairs, searching in my dressing gown pocket first, but my fingers only met a tissue……I spied the taxi driver waiting patiently outside and realised this was a discombobulated day….my mind wasn’t playing ball but luckily my eyes caught the shiny metal of keys on my bedside table and I breathed a sigh of relief……

He automatically opened his boot ready for my suitcase, as I usually have one full of overnight stuff and books to sell but I joked that the local Community hospital is the last place I want to stay……🙄

He asked me which way I wanted him to go and I was silent. I just couldn’t think how to get there, even though I’ve been many times…I just said…”ooo surprise me’…not knowing what else to say…

 We chatted our way there through rush hour traffic and arrived at the Community hospital as they were just opening up. I was very early but it meant I could type away.

I could also take a piccie of a lovely piccie in the waiting area….

My lovely Audiologist arrived to find me alone in the waiting room and her smiley face invited me straight in. It was then that we spent nearly 2 hours chatting…..2 HOURS!!! All her patients are given long appointments so they don’t have to keep coming back…

For those that missed my first  WOW appointment with her last September, you can read about it here…

https://whichmeamitoday.wordpress.com/2019/09/12/second-audiology-visit-for-hyperacusis/

We must have spent 15 minutes on my hearing aids and the rest of time simply chatting and sharing ideas, with her making copious notes. I wasn’t typing but jotted down soon after how we spoke about the possibility of her suggesting to Neurologists, how newly diagnosed people should be automatically referred by their Gp for a hearing test, simply so they’re on their radar. If they’re fine, brilliant, if there’s any sign of hyperacusis they can help before it’s too late as once you lose the ability to communicate, it becomes guess work for the audiologist and could make things worse. She has a lovely poster on her door showing the important connection between hearing and the brain….

She also asked me about my use of Alexa, and asked for tips to make a consultation easy and also around Care Homes. I’ve been so shocked at the lack of hearing aid hygiene in residential settings. She had a brilliant idea of allowing ‘a Champion’ to come and shadow the department for half a day, including the repair desk, which simply cleans and replaces batteries etc…..something often forgotten in hospitals and residential care…yet is so important otherwise they simply won’t work properly.

We spoke about sooooo much and shared ideas with one another. It really was another WOW moment and I left with her email address in case I needed to contact her…..a perfect consultation where it was win win on both sides……

Once I got home, I spied an email asking for a radio interview re the headlines in the paper today…

I said I couldn’t use the phone, so they suggested WhatsApp! Well I use that all the time but hadn’t realised you could speak into it (Idon’t think!)…so I agreed if they could send me instructions and a test question to see if I could make it work, I’d give it a try….and I did! It was simple with instructions 😇

So at 2pm the recorded questions started coming through on WhatsApp and I recorded my answers back…they asked about the social care crisis, being in hospital, what the government should be doing etc….one point I made was:

successive governments have ignored the social care crisis. Why has the ageing population suddenly become a problem….as the medical world has developed its skills to keep us alive longer, the situation will only get worse, so now is the time to stop talking and start solving… Dementia has long been at the bottom of the pile for care, we now need to be treated on level terms with other conditions such as Cancer…..”

They’re a radio hub which provides material for many stations to use on a particular subject so I might appear anywhere……A nice bonus to end my day and seems like the ‘doing’ brought me out of my discombobulation……..

 

How Important is the language professionals use ?… I need your help!

I’m often involved with stuff going on at Hull Uni. Well last week Professor Esme Monica.Cook, asked if I would mind sharing a survey they’re doing around language used to describe certain behaviours. The survey is titled: “Changes in behaviour associated with dementia – what do people with dementia and carers think about the language used?”

I’ve had long held views about the language used by professionals. My pet hate is ‘Challenging behaviiour’…which makes us out to be at fault instead of others simply not understanding our distress. But I won’t go on about my views as each and everyone of you will have your own.

They’ve already asked professionals for their views, but now, quite rightly, The survey wants to hear from people with dementia AND also supporters, so pleeease complete so they have as many views as possible. The survey will be open for around 4 weeks until 14th February, but the sooner you complete the sooner you can forget about it 😂

Here’s the blurb from the University ……

Dear Sir/Madam

 We are interested in gathering the views of people with dementia and carers on the language used to describe changes in behaviour in dementia. We would be grateful if you can help us by completing this short online survey, which should take around 15- 20 minutes to complete.

There can be changes in behaviour associated with dementia that others find difficult to understand, for example aggression, agitation, wandering, verbal outbursts, delusions, hallucinations, apathy and anxiety.

There are several different terms used to describe this, with differing views on how helpful or not these might be in the context of providing and receiving care and support.

This survey seeks to find out which term people with dementia and their supporters most prefer. The most preferred term will then be used as the title for a best-practice tool-kit to assist health and social care services in providing good support to people with dementia and their carer(s).

There are no right or wrong answers – we just want your opinions. Your responses to this survey are anonymous. Please also forward this email on to others who can help i.e. other people with dementia and carers.

If you have any questions or would like further information, please do not hesitate to contact us on: r.j.dunn@hull.ac.uk

 Click on this link to take part in the survey……

https://hull.onlinesurveys.ac.uk/languagesurvey

If people don’t know what we think how can we change what they think and the terms they use…..?

 

Filming with the two Liz’s…..

Yesterday I had a home visit from 2 Liz’s from Hull University……Liz Walker from from Hull York Medical School had asked if I was free to deliver a session to clinicians in February but I wasn’t so they asked if they could video me instead!

The medical school is introducing a new module looking at implementing treatments and care with evidence of direct benefit, for people living with advanced and chronic conditions. Liz believes It’s really important, in this context, to hear the voices of people living with health conditions and to understand the role they can play in research – perfect ….

I usually meet people in my village office, aka the local coffee shop 😂 but because they wanted to video, I agreed to them coming to my house. They’d both attended my graduation at Hull so I did know them…

Anyway, we decided on yesterday at 10am. A dull grey day greeted me as I opened my curtains….but the back of the house offered glimpses of a hopeful day

So I joked that I would need to change rooms in order to see the hopeful side..😂🤣😂

Any way Liz and Liz arrived as planned and then began much hilarity setting up. Liz Price had come as ‘technical support ‘ and we all chuckled finding the right way to set up a iPhone so it would be stable. Liz then came up with the genius idea of resting it on her open iPad and hey presto, we had a recording studio. All that was missing was the clapper board 🤣😂

It worked really well. Liz W had sent me the questions ahead of time so I’d been able to type my answers. Leaving it to chance means I miss out so much of what I want to say and I end up stuttering and faltering my way through…..but this way everything was in front of me.

They were there to ask about the value of involving people like me in research, about the challenges, payment options, and my experience of working with health care professionals and academics…etc

Part of my response about the challenges I’ve found was:

The challenges often don’t lie with us but with the researchers, to think carefully about our possible needs and react in a sensitive way.”

We did it in one take and all went wonderfully. They are such nice people and their values and beliefs on inclusion are perfect…..and they kindly agreed to a piccie

My video will be played to students in February……..

I then asked them a big favour….whether they were going via Beverley on the way to the Uni as I’d also promised to go to York if we finished early enough. Our able enabler, Anna Harrison, was running the stall on York market today and I said I would join her for a little while if I could get there. Well they did give me a lift and I did get there on what turned out to be a miserable cold blowy day, especially as we crossed the Wolds with the rain heaving down…but the bus trundle was still lovely, and the rain didn’t start until I’d taken this piccie as we passed the Westwood…..

……. I had nothing better to do and it was nice to get a New Years hug from Anna……..

I arrived and after hugs and a catch up Anna went off to get warm and a cuppa. It was a cold breezy day but nice watching the world go by. As Anna returned then playmates Eddy and Charlie each passed by on their way to the shops which was lovely. Our stall was promoting Minds and Voices, DEEP, Dementia Diaries, Healthwatch and all dementia related services in York, so leaflets galore, which did have to keep being saved from gusts of wind…🙄

Me and Anna both did the Skydive last year and are looking for our next challenge and she was delving into Google for inspiration. I did see my local hospice are doing abseiling down the tallest building in Hull but the vista around didn’t look that inspiring…….we’ll keep looking….

We didn’t have many visitors to our stall on this cold January day but the ones we did were well worth getting cold for……..and it gave me something to do……..😊