A Trundle to York…….

Yesterday was the first day in ages that I’d had two events back to back and it didn’t come easy. I was soooo glad I’d organised everything for the week on Sunday, as I always do, which meant paperwork, tickets and instructions were waiting for me on the side to put in my pink folder.

I was at Bradford Uni the day before and yesterday I was with Bradford again but at York for an event to celebrate one of the studies I’ve been involved in.

I’d got back the previous evening very tired and brain dead and then had to get up at silly o’clock for the early train to York. Normally this would be easy peasey as it’s my best time of day, but once again, routine has gone out of the window and 2 days running of out and about was hard.

Anyway….hopefully I’ll get use to it all again. It was a very different day from previous and the playful skies over the Humber had been replaced by an unwelcoming grey rain filled sky……but still there were chinks of hopefulness ….

Sandra was meeting me at York station for us to amble down together to the lovely Railway Museum – a train enthusiast paradise.

We were there to promote the findings from the BHiRCH Pilot project – Better Health in Residents in Care Homes. The aim was reducing avoidable hospital admissions from the care home.

As always, it’s been wonderful being on the reference panel for this. I often say that I’m doing it for purely selfish reasons – i.e. wanting to make things better for when I need them😂 but in this case it just reignites my thoughts on not wanting to ever go in a care home. So maybe I’m doing it for others with this project as some people want or have no choice but to go into a care home for various reasons.

Sandra’s train was late🙈🙄 but we’d left lots of time so ambled to the Museum. We were early so a cuppa tea wasn’t ready🙈 but we were early so forgiven. When the tea did arrive they had lovely big mugs so immediate brownie point……..but quickly taken away as when I went back for a second cup and they’d run out of water AND tea bags😱…….. had a strange concoction of Afternoon Darjeeling tea, which someone told me was real tea…….wrong………

Anyway, back to the session. The room was chocca as the event sold out days after being advertised…..
Prof Raymond Koopmans from the Netherlands was the first speaker.

In the nursing home where he works they have separate units, one being for people with Young Onset and day centre for people to stay active. Mmmm interesting. The Dutch government fund the University Care Home Network.

Here Care Homes have a designated GP but in the Netherlands they have specialist geriatricians. It’s a unique specialty in the world. They are employed by the Care Home.

They work 24/7 and have to be with a patient within 30 minutes any day any hour. All residents have electronic resident files which the doctors can access at home if out of hours and prescribe electronically.

Someone asked a question asked about funding and his response was that all care homes are state funded.
The charge to the resident depends on their income but everyone gets some if not all financial help.
In the Netherlands they have the money but have a severe shortage of nurses. They ideally want a ratio for 2 nurses on 8 residents…

I asked if the Netherlands have the 3 tiers as we have of Residential, Care and Nursing Homes?
His response was, since 2015 all residential homes disappeared as emphasis was put on staying at home but this huge transition has led to the Nursing Home system being under huge pressure hence the lack of nursing staff.

A really interesting talk on a system elsewhere in the world and comparing it to ours………..
Are we all moving to the Netherlands……?🙄 the room was busy looking up flights and packing bags…….nurses thinking of a change in country maybe 🤣

Next up was Prof Murna Downs……this project has been going on for 5 years……yes they want to keep people out of hospitals, but the main aim is for better health in residents in care home who are often hospitalised for conditions that could have been treated in the Care Home. They concentrated on 4 condition, for example Dehydration and Urinary Tract infections. It brought us back down to earth talking about this country’s system……

The Stop and Watch Early Warning tool is a simple tool available on line for anyone to use……..

Older people respiratory problem don’t always manifest in coughing, they become quieter….so knowledge is key to identifying changes early. They want the care assistant to feel a key part of residents medical care. But to do this they have to have the knowledge and training and TIME to do this. The family should also know the process as part of the care team as they often know best what’s normal and what’s a change.

Next up was my lovely friend Barbara Woodward-Carlton……who heads the Carers Reference panel, which I’m a member of……. Barbara told the story of her mothers traumatic experience in hospital. For her to say, ‘I don’t like it here’ was very significant.
She spoke of the important role of the Carers Reference Panel for this project. Bradford Uni of Dementia Studies has such a panel on all projects.I’m on lots of them, which makes me very happy.
She spoke of how Care Assistants are undervalued and underpaid.
Wonderful Barbara🥰

We finished before lunch with a panel question time. Liz asked the question of the day
”what is difference in the culture of the Netherlands that means the elderly are valued and funded in later life”……….He answered by saying that the current government has an interest in elderly care. He also said how one or 2 celebrities had a mother with dementia and wrote a book about it which attracted high profile discussion and helped lead to a change in culture.

In the Netherlands people do not have to sell their homes to pay for care……..

Very good questions, very good answers and then time for lunch………but it was by pure coincidence that I had a comment from someone from the Netherlands on my blog yesterday saying how there is little knowledge of Young Onset in their country……another case of you don’t know what you don’t know maybe?

Our unusual lunchtime venue!

The long day the day before followed by an early start yesterday meant brain shutdown came early and the afternoon session was lost on me sadly but I imagine it was very good……

What I did take in was that It was so refreshing to hear researchers stating the negatives as well as the positives. So often we’re given an ideal interpretation when a more balanced view is needed. That’s what we got today. The most interesting observation was that there weren’t as many unavoidable admissions into hospital from Care Homes as previously thought. So is the hype, political hype, to give the impression that more blocking of beds is coming from Care Homes?…….really interesting food for thought and just goes to show you should never believe all you read or hear ……….

People often ask me how I get a blog out so quick…….well I type it in real time, on my journey and then throughout the event. By the time I’m home, all I have to do is add the piccies from the day and hey presto it’s done. If I didn’t do it like this and left it until afterwards I wouldn’t remember the detail……😊

It was lovely to trundle past Wressle Castle bathed in sunshine as all I could do was stare out of the window……very tired but another good day……

My Monthly Trundle to see New Staff at Humber……..

I havn’t quite got back into a routine as my calendar is still quiet as the world wakes from Christmas. So it’s always a welcome when my monthly trip to Humber comes round to talk to new staff on their first day.

Some weeks I can fill my calendar many times over……take Dementia Awareness week in May….well I could have already filled that week 10 times over as it’s been full since last year.
Note to organisers – Dementia Awareness week should be 52 weeks of the year – why not have your own Dementia Awareness Week in your organisation so that it lasts all year and not just for a week……..just a thought🙄

Ooooo gone right off piste havn’t I…..😳……..anyway back to yesterday……..

After the lovely cold frosty snowy week just gone, the weather has changed it’s mind again and we’re back to milder weather. Yesterday was rainy and grey…..but the smiley face of Sarah turned up at my house at the arranged time.

We chatted happily and had a catch up on the way. There’s always one junction where I close my eyes as the village roads meet the main road into Hull……..and it can often take forever at rush hour to get out….but to our surprise I didn’t even have to close my eyes as a gap was waiting for us and we were both taken by surprise…..luck was really on our side……🙌

We arrived at Trust Headquarters and Sarah made me a cuppa while she then got all her bits together.

We trundled over to the lecture theatre, not knowing how many nervous first day faces will be waiting for us.

The Chief Exec, Michelle Moran, speaks first and then it’s our turn to follow her in……….

We went in and this month they were a very smiley friendly bunch. Some months they’re all so nervous  there’s just silence from start to finish – always very strange, but today I could tell they were a nice bunch.

Sarah went through her slides saying how good we were in this region but needed still to do so much more. There’s so many projects happening at the moment in Humber for lots of conditions as well as dementia which is always nice to hear.

Then it was my turn to finish off. I ask them at the beginning to:

“Imagine yourselves being given a diagnosis of Young onset dementia. Your life falls apart, you feel worthless and of no use to anyone any more……”

And then go on to talk about the impact research had on my life post diagnosis.

They were a lovely bunch and were very generous in their applause. One person said how she’d heard me on the radio last year 😳 I then took the opportunity to ask for a piccie for my blog since they were so friendly and they were all up for it.

All finished, Sarah then surprised me by taking me a different way back via the café…….they’d only been baking cakes at the weekend to sell to raise money for my Skydive…..

And had put a collection jar and details of my fundraising page 🥰

How kind and lovely of them all and then 3 more of the team arrived so another opportunity to ask a random stranger if they’d mind taking a piccie 🥰

What a lovely start to a Monday. Smiley new starters in Humber Trust and a cake sale to raise money for my Skydive……I’m soooooo lucky…….

My only trundle during a quiet week……..

I suppose I should have been grateful not to be travelling about with snow lying in some parts of the country and hazardous travelling conditions……..mmmmm maybe….but it’s a very quiet week this week. I’ve tried to keep myself busy ‘doing’ but it has been difficult….

But yesterday I did have a trundle. It was a meeting of a research project I’d been involved in, Journeying through Dementia. I’m part of the Steering group. Usually our meetings are held in Sheffield but this one was at the home of my lovely smiley research playmates at Humber.

Their administrator extraordinaire, Alison, had even offered to pick me up and even take me to a dental appointment afterwards. Every team knows the value of this vital link in the team. The person who is capable of organising everything and everybody – well Alison is the key person in the Willerby team.

Anyway, it was a beautiful, if not cold day outside my window…

Alison picked me up at the agreed time and we trundled to Willerby……having a chatty catch up on the way and putting the world to rights.

I went upstairs for Alison to make me a cuppa while we waited for everyone to arrive from Sheffield…….and I caught up with the rest of the smiley faces.

We eventually went downstairs and everyone from the Steering group was already there.

Journeying through Dementia is a large-scale research study that aims to find out whether attending a 12-week community programme has a positive impact on the quality of life for people who are living with the early stages of dementia.

Catherine from York Uni chaired the meeting. We went round the table and introduced ourselves as some people were on the phone. It seemed to be a trend for everyone to say their name followed by ‘part of this wonderful project’😊 just to give the research team a lift.

Jessica, the trial manager, spoke of a good idea I’d had at the last meeting apparently on retention….I took her word for it🤣 as I felt I was hearing it for the first time…..🙄

Many of the papers were way beyond me but Zoe had put a friendly post it on each one telling me what each paper was about – wonderful idea.Definitely worth a brownie point⭐️

I raised the question of the reality on relying on our answers in follow ups. And that raised a whole issue of current practices. I said that even if it shows how the current practices need to be revisited, that’s a good outcome. I said revisits 8 months after an event and asking us to recollect is a tad adventurous. We don’t like to feel embarrassed at not remembering so may make things up so we don’t look stupid……or we simply give an answer that comes to mind ‘today’. Especially when asked how has your mood been in the last 2 weeks……we could have had 13 bad days, but today is a good day so we’d say ‘fine’ as that’s how we’re feeling today and, of course, the reverse could happen if today was a bad day.

It made me think of our ‘Dementia Enquirers’ project and how we should think of different means of questioning.

All the groups have finished and they’re mainly doing follow ups, which seems amazing that it’s nearing the end of its life and now the evaluation starts…it will be interesting to see what they found.

Fascinating listening to the complexities of trials. Their heads must be in a spin coming up to the final leg of a project with data spilling out from their heads……..glad I’ve been able to contribute in my own little way.

I forgot to take any photos of the team🙈 but I managed to get this one just outside – not very good but better than nothing🙄

Alison then kindly took me to my dentist appointment venue……..a lovely day out and about thank goodness and just what I needed…..

Another wonderful Workshop……

Yesterday was the day me and Cathryn Hart had the opportunity to deliver another workshop as part of the Humber Recovery College programme. This time it was held at the Central Library in Hull.

The weather has turned cold so was grateful for Cathryn’s nice warm car when she picked me up from home…….

Cathryn and her Research team at Humber NHS Trust do a wonderful job and between us we make up the A Team😂

We arrived at Hull Central Library with a queue waiting for it to open! The lovely Acho, from the recovery college, and who helps us on the day, was also waiting in the queue. It was freeeezing…….but I had my faithful hottie teabag in my pocket so my hands didn’t get cold…..these amazing little chappies stay hot for 10 hours so I always have one in my pocket when travelling as I hate my hands being cold…..

Anyway the doors opened and everyone piled into the warm……..We went upstairs to the room and Acho had already said that we were overbooked😳. The library person came and said they’d increased the chairs to fit as many people as possible in the room😳……….not ideal but didn’t want anyone turned away.

People started to arrive and before long more people arrived who hadn’t registered! Luckily there’s always people who can’t make it on the day and luckily 2 people didn’t turn up so we were able to squeeze in the extras.

After cuppa teas were in situe, we went round and people simply said their name and their connection with dementia. It turned out we had a fabulous mix with student social workers, care home staff, organisations in and around Hull and wonderful people affected by dementia. Someone had even travelled all the way from Scarborough…….There was the lovely Bob there with his wife, who’d been to one workshop before; a lovely lady with dementia who reads my blog; a new recruit to the Alzheimers society research network, who I know as ‘Polly put the kettle on’ from my blog and now I’ve got that name in my head, I can’t think of her real name 🙈 – sorry! – along with her friend  Mark…….

So lots of hugs and hellos later and we started……….

At this point I wasn’t typing but I imagine Cathryn spoke of the research being done in the Trust and how people can get involved before handing over to me to talk about this that and everything. We like to keep it totally informal so the audience can dictate what we talk about and Cathryn feeds me reminders to put sentences in my head. This allows us to go off piste and not worry about it…..

The 2 hours flew by. We left 30 mins at the end for questions and had some really good ones. From family members being in denial and how to deal with it, to colour contrast in the home, how to deal with anxiety, guilt and many many  more. One I particularly loved was about a dad who didn’t recognise a photo of his son as an adult, which upsets his wife, so I said, try putting one next to it of the son as a child and see if it sparks recognition………

We laughed, there were a few tears and we shared ideas…….what a wonderful workshop with an amazing group of wonderful people……AND they agreed to a piccie at the end….we’ll be doing more workshops once the new programme comes out, I’m sure.

After lots of hugs and thank you’s we then all trooped out into the cold back into our own worlds. I said to Cathryn that I’d take the bus home so she wouldn’t have to take me home before going back to work…..I then promptly got distracted and missed my bus by a minute…..Billy wasn’t happy that I was late back for his lunchtime snack….but it was a nice walk getting to him

Exhausting day but sooooo worth it…..

First NHS Induction session of the year……..

I was sad to find an empty calendar awaiting me for this week when suddenly Sarah Trufhitt, Research Assistant at Humber NHS Foundation Trust emailed me asking if I was free to help her deliver the first Induction session for new NHS staff at the Trust.

Well it was yesterday. It was really weird getting up and having to go somewhere again – the first for a few weeks. Weird but wonderful. It was what I’d been looking forward to and what my brain needed, but still, it didn’t stop it feeling strange.

Anyway, Sarah agreed to pick me up from home and was duly there at the agreed time. She often comes to my village to drop off her cute dog. She found a wonderful ‘befriending’ system, whereby people who don’t have a dog,  because of work commitments etc, look after someone else’s. No cost involved. A couple in my village look after her dog each week – what an amazing idea and why didn’t I know about this!!!

Anyway, I digress……but this was our main topic of conversation all the way to Trust Headquarters!

We arrived to find a chocca full car park – obviously everyone was back at work and a whole group of new starters needed spaces.

Sarah made me a cuppa while she got her stuff together and it was lovely to catch up with everyone and of course have a piccie

We trundled over to the brand spanking new lecture theatre to find a room full of new NHS staff. From GP’s, Doctors, social workers, Nurses and Healthcare staff of every description – wonderful🥰

Sarah handed out the paperwork about Join Dementia Research, the Annual Conference, and I explained the free workshop me and Cathryn are running on the 17th Jan in Hull open to anyone and everyone.

Sarah took them through the importance of research in the Trust and the part they can play and ran through some of the current studies before I finished off. Part of my words go like this…….

“You may be sat there thinking, well what’s research got to do with me, it’s not part of my job? We have to normalise talking about research and to do this we must have every healthcare professional, no matter what their job, all coming on board and promoting research. To normalise talking about research would normalise involvement. If you don’t think research affects you, you may change your mind if you or someone close to you was given that devastating diagnosis of dementia.”

There were lots of smiley, friendly faces, which bodes well for patients visiting the Trust. The session went well and I noticed many making notes and listening instead of getting distracted – always a good sign.

Saw this nice A-Z poster about Dementia Research in the office too….

It was a good job it was a familiar short session. One where I read the same each time, nothing new, nothing unfamiliar. Just what I needed as a first outing for some weeks. Shame it’s the only thing this week but better than nothing…….

Very Last Trundle of the Year……

Friday saw my last trundle of the year. It was to a place I love going – Bradford University. I love being involved in anything there, as the staff and processes are perfectly set up for people with dementia. It also meant I’d be seeing my lovely friends Sandra and Barbara.

It was a very cold but beautifully sunny start to the day. The calm before the storm if I believe the weather forecasters……

I was meeting my fellow Alzheimer’s Society `Research Network volunteers, Sandra and Barbara for a cuppa and catch up in the lovely café at the Uni first. When I arrived the 2 had become five as Viv and Geoffrey were also there😊 We accosted one of the students to take a piccie by the Christmas tree…..

We arrived upstairs to find Murna and co with a hot meal of curry and rice waiting for us and a lovely festive table even though we were there to work

It was a lovely way too start the afternoon and we were soon joined by the other panel members of Sandra and Sue…..

We had the gorgeous lunch and catch ups with everyone.

Barbara is the chair and thanked everyone for coming as it’s such an important meeting as it’s the end of the three long project. “It’s lovely to make good friends” and over 3 years you inevitably make good friends.

Barbara continued to say, “At the time I didn’t think the way I do now” as in this project there’s been a lot of empowerment going on. Care assistants have been empowered by this project to care better. The staff have been empowered by the project to work better.

We’d been invited for a final time in order to comment on the end of project report and in particularly, the Lay Summary and the part played by our involvement. The primary audience for the report will be academics who are the founders at National Institute for Health Research.

So Murna and Kathryn gave us a recap of the actual project… Many people end up in hospital from Residential Homes unnecessarily – if action had been taken several weeks earlier, they could detect the signs earlier and deal with the problem before there was a need for hospital admission – The study had 3 elements, the Stop and Watch Tool, Care Assistant then alert nurse who investigates, who then communicate the findings to Primary Care.

The bonus for this research is that the elements were being implemented as part of the research. There were 2 Nurse Champions in each home who were supported in implementing the change.

That was the ambition, ……….the reality was the care home found it complex.

The key question to ask was ‘Will they use the intervention and is it feasible to use’?

The whole Team….

The good relationships built with the care homes enabled excellent information to be retrieved by the research teams.

Interesting information was gained around the use of the tool – the Stop and Watch Tool was used in some cases but many enthused that it was now all in their head so no need to use the tool as a recording method.🙈

Manager buy in, as usual had a big impact on whether the Care Home Champions had support to carry out their role. Some may have thought they follow certain protocols already but they had no means of proving it, whereas the research team  were giving them the Stop and Watch tool as a way of evidence of use.

Implementation of any change process takes lots of time and resources.

“A real window into Care Home culture” said Sandra of the report.

For me, the study has empowered care home staff and given them permission to think and to think they can help residents. But without backing from managers it wouldn’t work.

The ENRICH project has encouraged research into Care Homes but the fluidity of staff, owners and care homes makes it a very unstable environment. But many now use being ‘research active’ in their brochures to show they’re taking part in research and demonstrate they’re willing to learn and change.

Some said they loved using stop and watch but when asked, it’s all in their minds. We need the CQC to ask for evidence of prevention of hospital admissions – recorded evidence. For the care assistants and domestics it’s opened up a whole new role for these people who have most face to face.

Care Homes get penalised for sending people to hospital unnecessarily in America. I always get so edgy when ‘penalizing’ is mentioned. I think it’s the culture that needs changing as penalizing often has the opposite impact on what your’e trying to achieve as it hides the problem.

In this country, the hospital makes the savings if residents aren’t hospitalised but it costs the care home more to put in practices to keep people out of the hospital.

Sandra highlighted the fact that the Stop and Watch tool would be so useful for family members…….some staff in care home still held the view that family members have no role to play in early detection, 😳when in fact they can be key as they know the person best and could be the person who spends most personal time with them in some circumstances.
But I highlighted that we mustn’t forget those whose family don’t visit them – who looks out to make sure their care is good care? This simply highlights the complexity of Care Homes and the need to ‘care’ for everyone.

This isn’t a dementia specific study, but for staff to use eyes and ears so any resident should benefit.

So many interesting finding have come out of this project, some not surprising, others quite shocking, so let’s hope they get the funding needed for a bigger trial.

It felt like the end of term as me Sandra and Barbara walked down the hill to the station. It was lovely to have the last event of the year with all such nice people and all was going swimmingly to get home as planned……..until…….I arrived in Hull…….where my last train home was cancelled🙈…….it meant I had to get a taxi from Hull, but at least I had a lovely taxi driver.

As we chattered about this that and everything,  it turned out he knew Pontefract, where I lived most of my childhood and even the roads nearby our house. We shared lots of stories of the coal mine and generally put the world to rights but finally, after a long 30-40 minute journey, I was finally home…..😴

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……😳

The Start of an Exciting New Project……Part 2

So following on from yesterday………

We’re not undermining the wonderful work researchers do, we’re saying that we can bring a different and unique approach to research. But we also appreciate the guidance and advice from those professionals who are already very successful in that area……so this is where our three visitors come into play.

Prof Dawn Brooker and Prof Tom Shakespeare arrived…..David was delayed and Simon sadly stood us up at the last minute🤐…….after initial inductions it was lovely to share all our initial ideas with Tom and Dawn…

I talked them through our priority list and it was exciting to see their enthusiasm. Their role is providing their expertise on the barriers, such as ethics and the technicalities of research. They gave their views on ethics……this brought much discussion, much advice, much to think about. Tom stressed the point that published research shouldn’t be the be all and end all as non published research can be equally as valuable. Bridging the gap between research and storytelling…..both equally important

Lunch time….phew!

It was a lovely lunch and further discussion and ideas flowed. We were all overwhelmed by the volume of stuff and even Philly and Rachael were drowning under the amount of exciting stuff that we all wanted to get going……..it was interesting to see how Dawn, Tom and David hadn’t heard of hyperacusis. So we’ve already taught them something.

The first of my senses to be affected, 4 years ago, was my hearing. My ears became very sensitive to noise and certain tones of noise. We’ve since learnt, through amazing work by Agnes Houston that it has a name – hyperacusis. Many clinicians are unaware of the existence in people with dementia and now many of us are being referred to audiologists for a simple test – an ‘uncomfortable loudness test’, which can denote we need personal noise barrier plugs made specially for our ears. It is common in those with autism but not recognised yet for people with dementia…….

After our incredible busy morning we had time for a lovely piccie of the whole group.

We then had just over an hour to completely empty our heads and fill in the 3 prof advisors on the morning discussion. We wanted to hear their thoughts on how they think they can help

I asked for their initial thoughts on what they thought of our plans. Dawn said it’s so important to ask the right question and being clear on our line of enquiry. Defining the research question clearly. Dawn spoke of the expertise available at Worcester.

David said our second most important question was about who we want to influence as that can often influence the methodology. His knee jerk piece of advice was don’t avoid things just because they seem scary. Confront ‘research’, don’t avoid the fact that its research. Be curious. His interest is getting people to use their own voices. He said:

“create a harmonious cacophony of voices”

Tom said to ask how can we get professionals to continue doing this sort of work long after we’ve finished. He is a qualitative researcher with people with learning disabilities and physical disabilities. He can bring a different but relevant perspective. We must prioritise projects which are original and will have the most impact with the resources we have. Use those with expertise – we don’t have to do everything.
Also to ask what’s the value added value bit that we, as this group, bring to research.

“Make everything as simple as possible but not simpler” and “try to find a charismatic idea” said Tom

“ the topic is like a ball of clay, you’re not sure what it will look like but don’t be afraid that you won’t get a pot at the end of it” said Dawn.

All our heads were spinning and it was interesting to hear the fear some of the group had about their capability in this project. The fact that they spoke out about this fear was so good. They almost set the benchmark. If we can get it right for them then we have a chance of succeeding with others in allaying their fears and concerns.

“We believed we could and we did”…..a nice few words from Dory to end the day…….just can’t wait to get going now….

The Start of an Exciting New Project……Part 1

Innovations in Dementia have a major new project starting called Dementia Enquirers and we had our first meet-up yesterday! It’s testing out a whole new approach, where people with dementia will lead & control our own research, on issues important to us. The Big Lottery has funded the project with a grant of over £500,000…

Philly Hare and Rachael Litherland are our partners in crime and keeping us under control……well maybe……..a hard task for anyone to undertake 😂

It was a very wet murky start to my trundle but at least the train was on time. Bizarrely it was also raining inside the train, causing much confusion and shuffling around playing musical chairs……🙄☔️luckily, I was either getting wet and didn’t realise it or I’d chosen a good seat😊

Rachael was meeting me and some other playmates at Kings Cross before we wandered up to Euston to meet some more…….as it turned out, it was just Carol with Rachael first before we trundled up to Euston to meet Agnes and Dory.

Agnes was busy doing selfies when we found her. She’s found an amazing Tree of Thoughts. Euston station was wanting suggestions from people about how they could better help people with invisible disabilities by posting suggestions on a Tree of Thoughts. So a lovely member of staff was roped in to take a piccie of us all

Dory, Carol, me and Agnes….

 

We then climbed in a taxi and made our way through very busy London streets to The Royal Foundation of St Katharine – a lovely peaceful haven in the midst of the city hustle and bustle.

Philly, had arrived early to put up some very useful signage. After settling in my room and a much needed cuppa, I joined the rest of the group downstairs bu following all Phillys ‘Wendy’ signs, for a cuppa before supper. Howard, Mhari and Hugh joined us too and lots of conversation and laughter continued.

After a lovely supper I abandoned the group as my head was banging, as usual, and I retired to the peace and silence of my room. My silent community of Twitter, keeping me company.

The next morning, over breakfast, we put the world to rights and laughed sooo much before heading to the meeting room.

We began the session with Agnes leading a few minutes of relaxation which perfectly set us up for the day.

Rachael went through the detail – The big lottery has funded us for 3.5 years. It’s a new approach to research – led and controlled by people with dementia. It will give the opportunity for 16-20 grants so that DEEP groups can carry out their own research/enquiry

At lunchtime we’ll be joined by Dawn Brooker, Simon Denegri, David Crepaz-Keay and Tom Shakespeare – all professionals in their field.

It’s a very unique and exciting opportunity which is actually creating history in the research world for people living with dementia

We need to show the research world that we too can be professional in the role we’re undertaking. Researchers will come through our door instead of us going entering through theirs.

I asked if ethics would be involved and of course if we want to do valuable reasearch that will be taken seriously then yes they would. But what an opportunity for us to go before ethics committees and show them how we all still have talents and need to have our voice heard.

We need to turn research on its head. The Big Lottery were impressed because they like to fund projects which challenge the status quo. Research priorities will be driven by people with dementia.

We spoke of the words we use so as not to frighten some people. The thought of doing ‘action research’ will mean nothing to many. So having conversations with groups and allowing them to decide the words and type of ‘enquiry’ they want to make might be key.

We then had to randomly think of projects that we think would be useful. Soooooo many went on the flip chart……..we were bursting with ideas……wonderful wonderful ideas. 2 sides of flip chart paper……so we won’t be short on projects……..

Over a cuppa tea we then had to choose and tick our favourite 3………but I couldn’t help ticking 5 as there were soo many good ones….my head was buzzing with ideas and excitement…..

Role of the Research Interest Group was up next……again lots of excitement but also fear of our role. We need to work together to find ways of measuring what has changed because of the project.

It’s our opportunity  to amaze people in what we can do…..

The final job before our visitors arrived was deciding the logo…….we had 10 to choose from and narrowed it down to 2 favourites………😊

So this won’t be an overlong blog I’ll finish off tomorrow and you can read about what the professional visitors thought about our ambitious aims and how they might help us along the way……….