Category Archives: Communities

A Lovely Trundle to York………

Yesterday I was in York for a get together of Yorkshire DEEP groups. Now considering York is quite close to me – only 45 minutes by car…..it is one of the worst places to get to by public transport for an early morning arrival or to get home in time for the last village bus……..Northern rail, in their wisdom have stopped the direct train from Beverley and the bus companies have stopped the early morning direct…….🙈…..considering both are needed for workers, it makes no sense at all…..and makes my trundles very hard.

Moan over…

Anyway, so for a 10.30 start and 3pm finish I had to go by train. The taxi driver picked me up at 7.10 on a beautiful misty frosty day that would turn into summer by midday, such is the confusing weather we’re having at the mo. I was looking forward to seeing my playmates from Minds and Voices, as I missed the last session, but would also be meeting many new playmates from all over Yorkshire🥰

I was very disappointed with the state of the windows on the train so couldn’t get any nice piccies of the trundle🙄………but I passed by the river once I got to York, and that’s always a nice peaceful view.

I ambled to the Priory centre and en route picked up Damian on his bike and then Tommy and Paul from Liverpool! And we were joined inside by Scarborough, Bradford, Kirklees, and Halifax groups so our numbers had swelled beyond belief since the last get together.

Philly, Rachael and Rachel from Innovations started off by setting the scene for today and what we’ll be up to, including the launch of Dementia Enquirers to the rest of the network. ..I sat with favourite things of the day in front of me……..😊

The cartoon is by the lovely Tony Husband showing people with dementia in the driving seat of research….

After everyone said hello Rachael started talking about Our Right to a Grand Day Out project. She showed photos of the grand unfurling of our banners at York station.🥰 it was the culmination of 18 months work from people across Yorkshire living with dementia. Talking about our Rights with regards to transport and how a poor service confine us and how a good service enables us to get out and about as most of us rely on transport, so we have to feel safe.

Scarborough group talked about their Blue Badge campaign for people with Dementia and the outcome is that, once passed, it won’t depend totally on ability to walk but now includes ability to navigate. The proposal is due to come into being in April if Brexit doesn’t delay. It’s a post code lottery once again, as Tommy said they’ve had no problem in Liverpool getting blue badges……..the dreaded post code lottery again.

We watched the film from Bradford FIT group about travelling on buses. The update from them is that change is reeeeeaaally slow…..

Damian gave the update from our train issues and basically when we’re next going somewhere far afield we’re going to hire a coach……..says it all really. Nothing has happened, little has changed……

“You’ve got to get out and about and SHOUT” said Eddie……..😊


Here’s a few of my playmates from Minds and Voices – the rest were probably getting a cuppa😊

I think change sadly takes time, is very frustrating and the one thing we don’t have much of, but at least it’s showing others how people with dementia do have rights……..and do have a voice.

Just before lunch Paul and Tommy spoke about the work they’ve done on transport in Liverpool. Tommy often talks about, how in 2011, when he was diagnosed, you gain a diagnosis and with the other hand, a superpower – the ability to become invisible.
In Liverpool people with dementia train transport staff, buses, ferries, planes and trains. At the John Lennon airport, people with dementia and supporters are fast tracked through the system. It shouldn’t be a post code lottery though.

Rachel Niblock finished off before lunch by talking about the DEEP network and Dementia Diaries. We have groups all over the country from the Isle of Lewis in Scotland down to Plymouth ……the new DEEP Network now has a page for every group. Check it out here:

https://www.dementiavoices.org.uk/

And so to lunch ……..cuppa tea time……ahhhh…..and the banners went up

Photographer Ian, gave us the dates and places where the banners will be on display.

There are now some new banners, Budding Friends from Exeter and Hope, We all stand Together, from Kent and the Oldham group called the Ragartmuffins who have a motto of Art for one, Art for all. The exhibition will be an amazing sight when they’re all together.

Me and Howard then spoke about Dementia Enquirers with Philly giving us prompts. If people, like Philly, feed me the right words, I’m as happy as Larry and will probably say the right thing. I imagine I said how it will give us the chance to turn research on its head and decide the topic for ourselves. Researchers coming through our doors on our terms instead of us going through theirs on their terms….but we’re not naïve enough to think we can do it on our own. We will need a lot of help but it will be on our terms.

There was much discussion about the questions each group might like answered through their research.

I’m sure there was something else but I appear to have stopped typing at that stage 🙄

In a blink of an eye it was time to leave….but not before the trio of us doing a Skydive a weeke on Saturday had posed for a picture together

I wonder who’s looking forward to it and who’s worried…….🤣😂

It was a very weird today as I thought I would love being with so many people with dementia……so imagine my surprise when I began to feel anxious. I realised I was anxious for those others who were finding it overwhelming. I just wanted to make it right for them and I couldn’t…..😔 I could see one playmate struggling and just wanted to make the pain go away and, of course I couldn’t, until there was a break and we chatted about his time as a policeman, then he relaxed and chatted……..how sad is that……too much stimulation and noise often muddles the world around us. It WAS a wonderful day though.

Anyway, a walk back to the station along the famous walls was just what I needed to calm my banging head and get my final piccie of York with the Minster in the distance….

Trundle to my local Hospice….

Yesterday I had a lovely trundle to my local Hospice, Dove House in Hull. The bonus to this is that Sarah works there as a nurse so she was driving me there today on her day off.

We were going to record a piece for use in training staff in the importance of having difficult conversations with patients about Future Care and End of Life.

Anyway they’d reserved a space for Sarah to park right next to the entrance😊 and close by the tree trunk with the lovely carving of a Dove – hard to see the detail on the piccie but it feels lovely.

We were greeted by Elaine who earned the Brownie point for a nice mugga tea. Debi and Chris were already upstairs waiting.

Debi works for Humber in older people services and Chris at Dove House, so they’re working together on this project. Professionals are often not good at talking about end of life and this training is being filmed for Humber staff so they can see the importance of talking about difficult subjects such as advanced care planning which they’re not naturally speaking about at the mo.

Their initial aim is to roll out to 116 Humber staff registered staff. If staff go through Advanced Care Planning themselves they’ll feel so much more comfortable talking about it to other people.

So cameraman Matthew soon joined us and the filming began after shuffling round of chairs and flowers to get the best shots 😂

Chris asked me 6 questions including how me and the girls had talked and why, What help had we had from professionals (ha! None); the barriers and importance for people with dementia and finally, What advice would you give to Professional who are reluctant to talk about end of life’?”

Part of my response to the last question was:

“If professionals are afraid or reluctant, think how the people themselves must feel. They could be looking to you for guidance and if they see reluctance in your eyes or in your tone of voice, that would make them feel immediately uncomfortable about talking to their family. Set an example and show how natural and easy it is to talk about difficult subjects. If you can’t set the example what chance have we got?”

All done and dusted in one take🤣😂 Such a valuable and much needed course……the importance of the language used and facial expression when delivering this conversation is so important and something that doesn’t come naturally to everyone. Hence to need for training.

It was a double celebration day as Dove House was named last night as the 5th best not for profit organisation to work for in the Sunday Times 100 Best Companies⭐️ So Matthew also filmed me saying Congratulations to them all as well…….

A lovely hour or so spent in a wonderful calm and happy place……

A Trundle to Lincoln……

Yesterday I had a trundle to Lincoln to speak at the launch of Lincolnshire’s Dementia Strategy launch event:

I’d been asked a while ago by Paul Harrison, Operations Manager for the Alzheimers Society for South Yorkshire and Humber (Long badge needed!) Paul had put me in touch with a Dementia Support worker in the area who helped me find out the detail.

It was a dull grey day when they taxi man picked me up but at least it was half term so traffic was much lighter than usual so I actually got to the station for the earlier train to take me into Hull.

Now Lincoln is really not a million miles away from me……but I hadn’t realised the hassle getting there and back🙄 Note to self..check the practicalities BEFORE saying yes!🙈

Anyway, I’d committed myself so don’t like to let people down when it’s my fault, so off I trundled with more detail than normal in my pink folder. So here I was on a verrrry slow old train to Doncaster. At Hull station there’d been a brand sparkly new Transpennine train – we never get anything new in Hull!🙄 but then realised it wasn’t actually being used for people……just testing if it could make the trip to Hull🙈


Storm clouds and chinks of blue……

I then caught an equally old train from Doncaster to Lincoln and was surprised when it only had one carriage 🤔…..strange how it’s direct going but not coming back ………🤪

I text the society support worker when I left Hull to check she was still ok to meet me at Lincoln and began to panic slightly when after an hour I’d had no reply😳😳😳😳😳😳😳😳😳😳😳

Still no reply to another txt from support worker 2 hours later so I txt the manager Paul ………then emailed all of them………in the hope that someone would see it but got 2 out of office back🤢…………then emailed Jane from Head office……..

Luckily, Jane thankfully replied quickly and said she’d rung the support worker and she was meeting me………..and gave me another mobile number which I txt……..but still no reply……..😔

Now I’m not saying the next bit to embarrass anyone or want to get them told off or anything, but just as a means of learning how to support someone with dementia……

I imagine some people see me as a confident person who can sort herself out and I often can when going to places I know…..but I do have dementia, I do need support, especially when going somewhere I don’t know. Just a friendly txt shows me I’m not alone.

If you give someone your personal mobile number and then say ‘we can make sure we keep in touch and don’t miss one another’……I really expect to have a response to a text. If for some reason there’s a change of plans on the day, then a simple text to say, ‘Sorry, won’t be able to txt but will be at the station waiting’ is all it needs to make you feel less alone on a journey to somewhere that you havn’t been before…….it could have ended so badly as I was already working out how to just go home again……..anyway, as I said, not wanting to beat anyone with a stick, just wanting lessons to be learnt as we all have to learn somehow …..and she did look after me well at the venue and took me back to the station. I just wasn’t sure that anyone understood what the big deal was in the morning, hence why my comments here, to simply educate.

by pure chance and unexpectedly, my daughter Sarah txt me to see if my journey was going ok and looked at her tracker to see where I was😊

So the support worker was there to meet me and I breathed a huge sigh of relief. I finally arrived at the venue and just wanted a cuppa tea to settle me down….. lots of people coming up to me and saying hello and that they’d met me before😳. The nicest was a Gp coming up to me to say how my book had made her look at dementia differently and enabled her to look after her mum better – made my day…..❤️

While someone was getting me my second cuppa tea, I spotted my only familiar face in the room of Hilda Hayo from Dementia UK. So after a hug and 2 cups of tea later, the workshops started and I just stayed where I was, so had a workshop about Sleaford Dementia support, an independent charity … Bex talked about how they get funding from local people raising money  and the sort of antics they get up to, including fish and chips at Skegness….
We watched a video of people saying why their peer support group is so important to them. Wonderful….

Someone from the CCG came up to me and said how a Gp had spoken to her to say that every Gp in the country should read my book…….❤️

Quote of the day from Beks of Sleaford Support was:

“It’s the little things that make people smile”……

couldn’t be more right, especially after my experience in the morning.

Because I arrived late lunch soon arrived and I made my way downstairs to look at all the stalls. Lots of people saying hello and I had a lovely piccie taken with the Join Dementia Research girls….

After lunch the head of the CCG introduced me very kindly and I spoke for about 30 minutes. Part of what I said was around the language used by clinicians when delivering a diagnosis……..

An old age psychiatrist then spoke…..and immediately lost any brownie points he may have gained by saying nice things about my talk at the beginning but then talking about people ‘suffering from dementia’……..even though I’d just spoken about language………..🙈🔫

He did speak about his opinion of advanced care plans being needed and encouraged so he gained a crumb back….

It was a very medicalised talk unsurprisingly but then an Occupational Therapist from the same hospital spoke of the social interventions. She spoke of challenging the boundaries and the way clinicians think of a hospital environment.

Hilda Hayo was up next speaking out for the Admiral Nurse service. She spoke of the triangle of support and where Admiral Nurses fit in. Tier 1 is needed by everyone, tier 2 is bespoke but a post code lottery, Tier 3 is where Admiral nurse strength lies on the complex needs. Their helpline is there for everyone. Some services are there until end of life but they support the family after a death.

They’ve just about to have Admiral Nurses working in this area – wonderful. They will have total coverage in Lincolnshire – a very lucky area. They concentrate mainly on family and relationship approach and help build resilience in families and sometimes rebuilding them.

Brain must have had enough after Hilda as no typing🙄 so am typing the rest on the train home.

The people were really lovely there and wonderful initiatives, especially a web site but can’t remember the detail.  I’m glad I ventured into Lincolnshire. One image I have on the way out of the room is of a man with dementia and his wife stopping me and giving me a big hug as my talk had given them hope❤️………

Does Brexit have a hand in my Pharmacy chaos…………?

Last week I picked up my monthly prescription of tablets in order to fill my pill box. It wasn’t until I got home that I realised they’d given me a different brand than usual so colours, shapes and packaging had all changed……..

From my frustrated tweet, which said how I really wan’t sure whether I’d put the right pills in the right boxes….. came so much conversation, Debate, concern and advice……I LOVE twitter for this very reason.

Many have asked why don’t you let the pharmacists fill a blister pack for you. Well this is the first time it’s happened since I changed Gps….my last Gp suggested I come off Donezepil because it was of no use……I asked him:

So if it was you and Donezepil was the only drug available, would you come off it…….?”

He didn’t respond so I changed Gps and now have a lovely one willing to listen, willing to learn, willing to exchange knowledge…….just how a Gp should be, but only since reading my book has she changed. She was always kind, but never listened as much as now – bonus😊

Anyway when I asked the previous pharmacy about packing them for me they said they couldn’t put Donezepil to be taken in the morning as the information they have says to take it at night…….But if I take it at night it makes me have weird dreams so I take it in the morning – no more weird dreams but it means chemists won’t help me, or the last one I encountered said it wasn’t possible. I now realise, from Twitter, that it might be possible for them to help me ……….

So now I have a different chemist I never thought to check whether what the last one said was true……..until Twitter put me right…….

The conversation on Twitter lasted right up until the following day with various people tweeting their thoughts. It also provided lots of discussion with people highlighting their issues.

One person said how the print was so tiny it was difficult to read. This could be solved by the key words being in large print e.g. 2 at night maybe? Yes, I realise the printing machine probably can’t do this but maybe it could be handwritten in a space? But then someone on Twitter said,

I find it useful to go into camera on my phone and zoom in to read small print”

What a good solution⭐️

Others said how a busy chemist is unlikely to have the time to put the effort into caring about shape or colour as they’re under so much pressure. Others have said how their local chemist was so helpful and had time to listen to their needs……Crikey, I’d never even thought of a post code lottery in chemists…….

One of my dear friends said on Twitter than he’s now succumbed to the chemist providing his tablets ready packed, but:

“I now have to trust them to get it right, so it means I am far less aware of what I am taking.”

So is that right too? I know that if I allowed the chemist to pack them for me and they arrived looking different, then I wouldn’t trust they hadn’t made a mistake. How would I know? After all there’s humans involved in the process and humans make mistakes. So I’d feel continually anxious when I looked at my pill box. I have also always taken a high dose Vitamin B supplement so that wouldn’t go in the blister pack, and would need to be remembered separately.

If I went on another clinical trial, those tablets wouldn’t go into the blister pack – another one to remember separately.

Others said how it’s the changing shape and colour that confuses. Here’s mine this month that changed colour

And the bottom ones changed shape….

Maybe those who request through their Gp could have a note on file to say use the same brand maybe?

Some said how the pharmacist has to tell you when the colour changes or they’re a different shape…..well mine might have told me but the minute I walk out I’ll have forgotten that he said it ……🙄

Some packs of tablets are see through and others you can’t see what tablet is in the blister

Why can’t they all be see through so you can see what’s in it? I suppose pharmacists must have a way of knowing🤔 but it would make it easier if there was consistency in packaging.

Also this time I was given a bottle of tablets instead of a pack

More confusion all in the same month……no wonder I didn’t know if I’d put the right tablets in the right slots!

Twitter, of course, provided lots of advice including this local link for me from an admiral nurse

https://communitypharmacyhumber.org/services-by-area/east-riding-of-yorkshire/el23-medicines-management-er/

Another more concerning Tweet was about Brexit 🤢…….their chemist told them that:

Brexit stockpiling has made it hard to get someone medication in store leading to capsules changing colour, other pills changing size as they try and get their hands on anything they can…….so this may be a small problem that’s about to get much larger……’

So the ever present Brexit is now going to compound the medication confusion as well as everything else🙈😳🤯🔫

For anyone who needs it, could a note go on their file to say, ‘needs consistency of medication appearance’ or ‘needs large print’ or whatever?

It felt like another case of we don’t know what we don’t know until kind people on Twitter Fill in the gaps……

We try to remain independent, to cope on our own. At every avenue I feel like there’s a battle that has to be fought……why? I know others have it so much worse but when a chink of your independence seems to be ebbing away you have a tendency to feel a tad sorry for yourself. I guess that’s how I’m feeling now……

Listening to the work of my favourite species…..

Yesterday I trundled to see my favourite species – students at Bradford University. This time I was there as an Alzheimers Society Research Network monitor for the DCT (can’t remember what DCT stands for – hate acronyms 🙄)……….

Anyway some of the PhD students were there to give us an update and presentation of their work so far.

It was a strange start to the day as my legs and brain had obviously had an argument and weren’t talking to one another…..at the station I even had people helping me on the train and the guard showed me to a seat, so I must have looked a tad discombobulated and legs and body out of sync😳🙈……..there’s no routine for the necessity of early rises and train journeys at the mo, so maybe that was it…….I’m also a bit doped up with tablets at the mo, so that could be another reason……who knows………maybe they’ll make up and talk to one another soon 🙄

Anyway the trains behaved in the beginning and I’m typing this on the second train to Leeds.

The sky looked almost playful as we trundled along the Humber

I arrived in Bradford amazingly on time, and wobbled my way up the hill to the Uni where I found Sandra, Barbara and Jackie in the cafe and Vivien joined us in the room …….The students were all ready and waiting with their supervisors all ready too  and Paul had the first slide up on the screen

After a cuppa tea, catch ups and hugs, we were ready to start……

Barbara started the meeting and we introduced ourselves. Students, Helen, Angela Suzanne and Paul were the ones under the spotlight today. We celebrated Courtney’s and Denise passing of their PhD – amazing………both were sadly not there as they’re now working!

We suggested they make a mini podcast on film giving us an update of what they’re doing now😊

Murna then spoke about a possible celebration and dissemination event in July to celebrate their graduation.

Paul was the first to present an update – his study is on how people with dementia manage their medicines at home with the help of community pharmacists………

In the literature there is little in relation to medicines management particularly of those living alone…..
So this formed the basis for the questions for his project…..he will be gathering information from people with dementia on attitudes, challenges, routines and strategies, Types of support and what would help……..
And then ask the same questions of pharmacists……

I asked the stupid question “What is a Community Pharmacist’……..I hadn’t realised there were basically 3 types, Hospital Pharmacists, Pharmacists attached to Gp practices, and Community pharmacists (the normal high street pharmacists)

Sometimes it’s the simple things that help……for example medication in liquid form than tablets. I mentioned the importance of colour – if I needed 1 familiar pink one, that stood out, then giving me 2 white ones won’t help…..

Suzanne was up next……her study is on investigation the quality of medication management when moving from care home to hospital and back again.
It will hopefully inform improvement into the practice and influence policy.

She’s looking at policies in the hospital and care home – their roles and responsibilities at transition points between the 2 establishments.

There seems to be so much confusion about best practice around medicines and transition between care home and hospital and in reverse…
The question was raised around responsibility when someone with dementia is admitted to hospital – should someone from the care home go with them? But is that practical if the person maybe in A&E for 10 hours or something. Who is accountable for information transfer? It’s the tiny detail that makes the difference between someone taking medication and someone not.

It’s not just a list of drugs that’s needed, it’s the finer detail about the person themselves that’s useful to know.

Paul gave the quote of the day……“Without responsibility there’s no accountability”

Lunch and cuppa tea time and the students gave me a belated birthday card……🥰🥰🥰

Third up after lunch was Angela who is looking at the nurses role in transition between hospital and care home paying particular interest in the discharge process.

Her main questions are around roles and responsibility and the barriers and facilitators for implementing these roles.

She is gathering both perspectives from nurses and care home staff about what is their role when someone with dementia is being discharged back to the care home.

She found a lot of variation in practice around information exchange. Lots of tensions within the system.

The one side don’t understand the others practices … there’s no joined up working sadly. IT systems don’t talk to one another which are big barriers to helping good practice.

I said how hospital managers and Care home managers and Pharmacists, need to be invited to hear the outcomes of all these projects. They need to be made to look silly as they won’t believe the staff on the ground have the problems they have. No good having the staff as they can’t make the change but managers should be made accountable for such rubbish and disjointed systems. They should have a job swap for a day…..hospital nurses have very little knowledge of what goes on in a care home. They don’t see how they are all one big team. There’s a cultural issue of how care homes are viewed.

Finally Helen gave us an update about her project. Talking to women who lived on their own when diagnosed but not necessarily now. She is doing it through narrative research, so gaining valuable information through conversations. However, she found it so difficult to gain interviews because, she thought, of racism and gatekeepers. It’s about people attitudes and assumptions. Dementia has silenced a lot of people as gatekeeping comes into play. The mental capacity act is being used to stop people doing things instead of enabling. She has only been able to get women through word of mouth. No other method has worked for her.

From all I heard there was soooo many examples of why I never want to go in a care home…..or into hospital……….

At the end me, Sandra and Viv met with Prof Jan and Prof Murna to discuss the meeting from the perspective of the Alzheimers society research network monitors……..just so we could complete our feedback form.

Needless to say we were well impressed as we always are here at Bradford. Seeing the students eyes light up when they speak with such enthusiasm is a joy……….wonderful…..

Our own Solitary Bubble……

Last weeks blog:

https://whichmeamitoday.wordpress.com/2019/01/29/why-are-we-deemed-so-worthy-of-so-little/

…brought such a response, especially from people reaffirming what I thought was true. Sometimes, I wonder if it’s ‘just me’ as dementia is a lonely place sometimes.

I live alone yet have the wonderful company of my silent community on Twitter to keep me company or I can be in a crowded room yet still feel alone, such is the chaos and confusion all the noise and conversation makes.

So it’s why I often put things on my blog,  just to see people’s response; to check I’m not alone in my thoughts.

I know I’m lucky to be able to do this – to type a blog, to have a silent conversation on Twitter. Typing being my escape from dementia.

Those without this virtual support must rely heavily on those around them, if they have people. For those living alone, or whose families have deserted them, it must be a very lonely and confusing existence. Although, for some, maybe it isn’t……

I see a chappie frequently in town who clearly in my eyes is living with dementia. The locals refer to him as ‘not quite right’, but not in an unkind way. He’s always alone but he sits happily in the bus station on the benches and chats to anyone politely who sits beside him, about the weather, and smiles contentedly. He gets on the same buses and travels to the terminus and back and then hops on the next familiar one or repeats the first. Most drivers seem to know him and are kind and understanding. He’s happy and content in his trundling world. This is the routine he’s devised for himself.

So not everyone has insight, purposely creates strategies and solutions. They just get on with their life as best they can. Perhaps they’re not even aware of their diagnosis. Helping themselves and hoping others will be kind along the way.

However, it’s when kindness gets lost and forgotten that problems arise. Like when an unfamiliar, possibly new driver, wouldn’t let him back on the same bus as he’d already been on it 3 times that day. He then sat alone on the bench, confused and sad, his routine broken by unnecessary words. Moments later, I was about to move and sit by him, when another man sat down and started chatting to him and the smile appeared on his face and all was right in the world again for him……because someone was kind.

The villages who catch my bus always make sure I get on the right bus, especially if its busy or the bus parks in a different place. All eyes are on me, as I often wait in a quiet spot further down. I appreciate their kindness especially when it’s confusing.

Kindness costs nothing and can make someone’s day. Harsh words cost nothing and can throw someone’s world into disarray……I know which I like best…..how about you?

Thinking of those who Care at Christmas……

Those who support people with dementia  also need time at Christmas.

They often feel isolated and pressured at this time of year. Trying to juggle caring with all the normal hustle and bustle of getting ready for Christmas must be so challenging at times.

They need a Hug……..just like we do

They need Time……just like we do

They need support…….just like we do

Parallel lives.

If you know someone caring for someone else this Christmas, offer to give them a break. Look after their loved one for a few hours so they too can go and enjoy the festivities. They may just need time to shop, time to wander walk round the shops, time to wrap parcels in peace or do a bit of cooking, or they may just need time to simply be by themselves.

Help make their Christmas a happier one by simply giving the gift of time… 🙂

 

A Local Trundle……..

Yesterday I was with my local Humber Research Team for their quarterly Research and Development Group. Cathryn Hart always picks me up from home and we trundled to the Trust Headquarters with a beautiful morning sunrise

We arrived in reception to be met by someone from Clinical Governance signing in for the day who saw me and said she’d just read my book😳 with her book club and said kind things….so that was a nice start to the day.

What was even nicer was when we walked into Cathryns office and found their research team, ‘naughty elves’ guarding my cuppa tea along with a Christmas card🥰

Photos followed for their Twitter account before I could drink my cuppa.

We trundled down to the room to find lots of last minute cancellations….seems to be a theme this week – anyone would think it was Christmas!

The Research Newsletter caught my eye…..on the front page is a “Letter to Santa” from the Medical Director, Dr John Byrne. I bet it’s not every Medical Director that’s written to Santa!! Wonderful….

And the Research Team won the corporate Services Team of the Year at the staff awards – not the usual team to win awards, so a wonderful accolade for the team……and goes perfectly with the pressie I bought them that they’ll be opening at their Christmas meal next week……..😊

Cathryn started the meeting. ‘Research active Trust’ will be mentioned in all job adverts on NHS jobs so that staff know it’s core business. It’s because the Chief Exec, Michelle Moran is very pro Research, which helps no end.

We’re top of the recruitment in Yorkshire and Humber area of the Mental Health community Trusts.

CQC are now involving research in their inspection of Trusts.

Cathryn spoke about the possible opportunities and studies that they’re currently involved in or are applying for funding. Some wonderful opportunities coming to my region in lots of different specialties.

Cathryn spoke about the success of our Recovery College workshops that we run as a double act on Living with Dementia and what you can do to help and the amazing feedback we’ve had. Our next one is on January 17th at Hull Library.

Professor Mark Hayter from Hull Uni Health Sciences faculty joined us…..

The enthusiasm for encouraging research in the Trust is wonderfully heartening to hear. So many diverse projects and research being applied for or happening at the moment.

Their next Trust Research conference is the 15th May….but places are going quick…………they were all sold out within 3 weeks last year but amazingly they’re going quicker this year……😳

We always finish off with someone being invited to speak to a more general audience, so others joined us and Professor Mark then spoke about the Faculty of Health Sciences Research Strategy…..it was lovely to hear him say that strategies are pointless unless it works alongside an implementation plan……..otherwise it’s simply a document to tick a box…

He gave some fascinating facts about the area including Hull being a good place to do population type research as the population doesn’t tend to move around.

He spoke of the complexity and need of the University to be recognised as the success of the research and it’s affect on changing practice in the wider world affects the amount of money given by the government.

He spoke about the Health Sciences faculty being the one that carries out the most research so a very valued and valuable faculty for the University.

Another fascinating fact is the numbers of 18 years old is now lower so the same number of universities are seeking a lesser number of 18 year olds and it will be like this for a few more years…..so they have to diversify……They are putting a lot of work into Grant Application quality as the funding application process is highly competitive……and insisting academic applicants are planning ahead instead of leaving it until the last minute….

Wonderful to hear him say that Research Ethics needs a tidy up…Yup…….

He also gave me the quote of the day…………

From Sperm to Worm”

about the span of the research undertaken in the Faculty…….

A fascinating talk to end the meeting…..

My last trundle of the year to London……Day 2

So to the follow on from yesterdays blog……I finished the meeting at Dementia UK with a banging head as usual. It was my first time there so I had to concentrate even harder to understand why I was there. Damian trundled back to the tube with me, Diane and another lady whose name I didn’t get. He kindly offered to get off at Euston to make sure Diane got there safely. I knew Kings Cross well so was fine.

I briefly went back to the hotel to find my room before my tea time meeting with Ian and Tom Pauk . It seemed like a good idea at the time to arrange this meeting at tea time, but I soon realised my enthusiasm at hearing their plans would not compensate for my rapidly hazy brain. I should have taken my ipad and typed but I didn’t think….so even though I was with them for 90 information packed minutes, I can only vaguely remember snippets of probably 15…….hopefully Ian will send me a resume of what we talked about as the snippets are so varied, I’m not quite sure how they all fit together🥴

Note to self……don’t add an extra meeting onto the end of an already long day or take someone with you!…..I was definitely running on empty when I got back to the hotel.

So now I’m typing the following morning and reading back through, I remember very little☹️

But my brain has recharged overnight ready for a meeting of the Young Dementia Network with the lovely Young Dementia UK. We were having our research strand meeting first.

Since I was there overnight, I had time to trundle to the British Library and have a wander round the shop, always a nice relaxing experience.

I arrived at Esme Foundation to find Reinhard waiting soon to be followed by Jan, Jackie and Janet …..we began by discussing the research topics the professionals review, for which I then I do a lay review of what they’ve said……

We spoke about how to promote it on Twitter better and threw ideas around…….and worked out the rota for them to do the next batch of reviews.


Need more practice at selfies🤣

We spoke about the Network Conference we’re organising for next June and decided on 24th June in Sheffield as my lovely friend Prof Pat Sikes had found a brand new venue at Sheffield Uni . The topics were then decided. We’d gone out to the Network and to those who came to last years conference to ask what their priorities were for what they wanted at next years conference. So we went for the top 3, Education of professionals, family interventions, including for children and young people and employment

RESEARCHERS SAVE THE DATE!!

Stands to promote research were considered, so for example Alzheimers Society could have a stand around the Research Network etc, and Innovations might consider advertising Dementia Enquirers. Lots of options. Speakers and types of speakers were discussed…..very excited.

We put our names to our own roles and responsibilities – I put my hand up for advertising on social media😊

Once we’d finished it was the turn of everyone else to arrive for the Young Dementia Network meeting. We were a bit sparse on the ground as there’d been some last minute cancellations due to illness and train cancellations. We chatted and caught up over lunch and I caught up with Keith and Rosemary on his forthcoming book before Tessa started off.

She started off by feedback on the Young Dementia Conference from last year – the sessions where people with dementia took part were the most successful and commented on.

Peter was the first up to give a resume of his meetings with the Dementia Program Board at the Department of health. Sadly my mind wandered and I kept flittering back in and out of the room so don’t have anything typed. I did hear that Psycho social support is the missing link.

Tessa read some notes from Philly Hare on Dementia and Disability from the All Party parliamentary group that she presented to.
She quoted my lovely playmate from Wales, Nigel Ullah – “Society values people with intact cognitive ability” which leads to people with dementia being devalued.

Membership of the Network has gone up to 2087 so we hope we get to 3000 by next September. Peter said we need to get this community working together and with us. A third of this number are people with dementia or supporters and a third of that third are people with dementia – good numbers.

Keith then spoke about his new book, Dear Alzheimers, coming out in April. Seeing life through a diary – a reflective journal approach. 50% of his royalties will go to Young Dementia UK.

Kate then gave me my own pot of tea………brownie point for initiative,,,,,🤣

Janet gave a summary of the diagnosis and post diagnosis work stream. The Young Dementia Care Pathway developed around the ‘I’ Statements – Janet said the issue was around how much it’s being used or whether it was being used and whether it was accessible….work in progress…..
Their second focus of work is identifying the role of the key worker for people with Young Onset. Creating a job spec of the skills needed for this role. Hilda and Jacqui are having a paper published in the Journal of Dementia Care. Keith highlighted that maybe it would be an idea for me and Keith to comment on the job spec.
Third key area is about the expert consortium. Trying to bring certain organisation together to work collectively to provide information in a radical way to try to identify models of best practice that we could influence with regards to UK services. The Stroke model of integrated care might be an excellent to follow. It all sounded very exciting and a wonderful ideal to reframe services and why Young Dementia needs unique services.

It was now 3pm and it’s been a very long 2 days……..brain flittered in and out of existence so detail is now a tad sketchy. Sadly I missed Reinhardt feedback…..caught words but not sentences….

But luckily it was time for a Tea break……and time for a piccie of the view from the venue

Kate fed back on Dominiques strand of Awareness – Fleetwood Memory service have given out 300 of our Gp leaflets to GPS covering Lancashire, Blackpool and Fylde.Yorkshire and Humber Clinical Research Network for Dementia have expressed an interest in doing the same and being involved……wonderful if it happens. They’re currently designing a version of the Gp leaflet for the general public to take to their Gp……

Jan fed back on our meeting this morning, which I typed about at the beginning and on the Angela Project (DEFINITION). She showed a lovely ‘Flower of Needs’ that has come out of the research. Obviously different needs affect people at different times and importance.

I’m not able to show you a picture of the flower simply because the work hasn’t been published yet and it is quite unique. Very exciting stuff.

Instead I’ll show you a piccie of Festive Kings Cross………

The end of a long 2 days but a lovely 2 days………more local ‘up north’ for the last 2 days of the week………then an empty calendar looms large……😳

My last trundle of the year to London……

So yesterday I trundled down to London for my last 2 days there before the New Year. I had 3 reasons for going; the first day I would be with Admiral Nurses LEAP group (Lived Experience Advisory Panel) and the following day with Young Dementia UK. My third was a tad random as I was having tea with Tom Pauk  and Ian who wanted to discuss the possibility of having my portrait painted…….as you do…..😳🙈

Anyway the day didn’t start off quite as planned……..British Rail, in it’s wisdom had decided to release a whole new timetable……no problem, I thought, as I already had my tickets……don’t know what made me check the website the day before…..but…….my first train to Hull had disappeared😳 even though I’d booked that train🙄……

We usually have two trains into Hull at silly o’clock, 15 minutes apart, I’d booked on the second one that had magically disappeared and apparently no longer existed🤐. I went into my taxi people to book an earlier time only to be met with a gulp, a roll of the eyes and ‘Oh no not you as well’………of course everyone who had booked the later train now had to catch the earlier one, so no longer were taxi rides staggered…….poor taxi company had to call in extra taxi drivers to start early just because of the timetable changing………She said she would sort me out but not to panic if it was a tad late (they know me well) and sure enough it turned up on time and we grumpily trundled to the station (I must have had a driver who had to get up earlier than expected🙄

It was dark and cold on the station platform. Everyone in their own little world, many of us there earlier than expected……so what happened?…….the train was 20 minutes late….🙈later than even the original second train😏 which left us 2 minutes transfer time to the London train in Hull😫….

Anyway……..I managed to get the London train by getting on in the first carriage and walking through as it departed…… not a good start to the day🥺

It took the world a while to wake up and we were well on our way to London before I could take a piccie….there was a lovely sunrise in Doncaster but too dark to take a photo from inside the train and the a blanket of fog covered the land…

And the further south we got and the sun was getting higher in the sky it was desperately trying to burn off the fog. It was a lovely trundle with beautiful skies waiting for the sun to win the day…..

Damian had kindly offered to meet me at Kings Cross as Dementia UK (home of Admiral Nurses) have now moved to new offices, so safety in numbers trying to find it!

We trundled off to Aldgate to be met by Toby standing outside. Dementia UK now have lovely offices. Soooo many people arrived that I wasn’t expecting. Some from Twitter, some playmates, including George, Diane and Tracey.


A lovely smiley piccie by George before we all started.

We had an ice breaker from Suzy first…she put cards in the middle of the 2 tables with questions that we each had to choose and answer to the group…..

My question was ‘What helps if you’re feeling lonely?’……my answer……go on Twitter and either look or chat…..never lonely with Twitter.

The group was a mix of people with dementia and those who care or cared for someone with dementia so each went through and said who they were as me and Hannah were new members.

We went through our agreed ways of working……..

Toby took us through the impact LEAP has had over the last year, from advising on content and being a critical friend to the Trustees.

We went through the New Influencing Pack which would enable us to lobby commissioners or simply to promote their existence. Much debate then followed on the language used to describe the work of Admiral Nurses.

We were then joined by Hilda Hayo, the Chief Exec, Steve Jamieson who is a Dementia UK Trustee and Faraday who is about to start a new role in Comms.

Steve spoke about Dementia UK being ready for the ‘iceberg round the corner’…….we have to make sure we employ the right people with the right skills. How do they influence the future of Dementia Care? How can people who make decisions, make those decisions without those directly affected? The louder the voice, the greater the influence, so it’s important to work with groups like TIDE and DEEP and also the major charities.

We saw a film about how they raise money and gave feedback on that. George had the great idea of a voiceover being available instead of reading.
Hilda then spoke about their ambitions as a charity for the next few years. Admiral nurses aren’t all employed by Dementia UK. For example, through Admiral Nurse clinics – 45 minute advice clinics, funded by a myriad of organisations. Some are employed by councils, commissioners etc. Various organisations purchase different services from them – for example, clinics and helpline services.….there’s been some wonderful new services created for those with Learning Difficulties diagnosed and also post diagnostic support.

Within the triangle of support, the bottom part is their leaflets and helpline, the second part could be clinics and the top of the triangle is the specialist clinical support from the nurses.

The ideal would be to have an Admiral Nurse clinic in each Gp practice because they’ve found GPS speaking popping in to ask questions……

Lunch time…..and time for a group photo for their web site and mine!

After lunch George took us through our Workplan. We split into 2 tables to discuss…..understanding how we will influence the new strategy …….it started to become difficult to concentrate and my brain was started to buzz, conversations and voices starting to merge……..but a wonderful meeting, with a wonderful eclectic mix of people, each with their own unique experience of dementia at the table, showing the value of the Lived Experience with Dementia UK.

People affected by dementia should have access to an Admiral Nurse when there’s a need just as much as people with cancer have access to Macmillan Nurses……….a long way to go but some wonderful work being done…..