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……….

A Visit from a Smiley Face……

Yesterday was a snuggle day at home with the welcome interruption of a researcher visiting from my local Trust.

I’d taken part in the IDEAL -1 Study some time back with a different Trust. Not sure where, when or who but I remember doing it. Think it might have started in York and finished when I moved but not sure.

Anyway, they have now secured further funding from the Alzheimer’s Society. It’s run by Exeter University. They are interested in hearing what hinders or what helps us live as well as possible with dementia.

So yesterday Emma, from my lovely local team, headed by Cathryn Hart, came to my house. I only let smiley people into my house and all the research team have smiley faces so know I won’t be disappointed and I wasn’t……

Emma was here today for me to sign all the forms and for her to get use to explaining the study to people. It must be hard for Research Assistants at the beginning of a project to feel comfortable and confident in the knowledge they have of the study, so always good to have someone to practice on😇.

Emma will come along with Saba to do the proper interview when we can get a date that suits all of us🙄

Two more years of data will be a wonderful rich resource for health,wealth being and daily aspects of life with dementia in tow. So I’ll have one visit in a couple of weeks and then 2 more visits with a year in between each.
Humber Research Trust have the task of enriching the current cohort with those lesser groups – 90yrs plus, younger people etc.

I’ve also agreed to an extra bit on the study – to allow access to my medical records. This will allow data to be gathered from my visits to Gp etc.

A company outside of Exeter Uni and Humber accesses my Gp records to see the number of visits and costs of services I receive. Data linkage identifiable data is kept separate and the information collected is used to calculate the cost of health and social care.

A great resource for the future and to provide evidence around living with dementia. This study is taking part across the country, so If you find yourself in a position to take part in this wonderful project  please consider,  as I can’t tell you how invaluable it will be as evidence for future services needed….🙏

How can those who hold the purse strings find out what works and what doesn’t if we don’t take part in research to collate all the evidence…….we know that social care is in a mess, let’s do our bit to put it right…..

In the midst of a busy week…..

On Monday I made the long journey to Bristol. I hate Cross Country Trains so much that I went via London for the journey there.

I’d been asked a long time ago if I would speak at the BRACE annual conference and be interviewed by ex newsreader, Sir Martyn Lewis.

Each year they hold a national dementia conference featuring some of the UK’s leading thinkers on dementia (scientists, campaigners, politicians, care providers) and hosted by former newsreader Sir Martyn Lewis. So it was lovely to be asked to be part of this event.

The journey didn’t start off well as there was much confusion at the first station due to a delayed train, me misreading the information board and being on the wrong platform with a heavy suitcase….🙄. I ended up getting so confused that I got on the wrong train, but all trains go to Hull so I thought I’d work it all out and start again once we got there.

At least the sun was shining……

Once I got to London I went over to Paddington to catch the GWR Bristol train. I don’t travel with them very often, which is such a shame as the staff were very friendly and the seat reservations are much easier to understand than the new LNER east coast system..red for taken, green for vacant – simple……..and in words as well…….simple is often forgotten……

And so I ended up changing in Hull when I didn’t need to but hey ho……each of my connections were on time after that and kind smiley people helped me on and off with my laden suitcase.

But, hey, many hours later I arrived in Bristol and the taxi took me the short ride to the hotel. The Team, including Martin Broach were setting up the room in preparation so I went and said hello to find where I was going.

The next morning I trundled up to the top of the lift and found people arriving. Someone from the Alzheimers Society Research Network came over and said hello and then a Twitter pal came and made herself know – it was the only reason she’d come! Awww, I love Twitter pals……and then even more followed……so nice to see so many….

The conference was called #Together 4 Dementia

I met a woman at the tea stand who said her partner, who was now in a nursing home had spoken out lots about having dementia and still took part in research even though she was now in a nursing home – wonderful. Me thinks that where you are is irrelevant. It’s important that people of every stage take part in research.

It was still quiet as I’d purposely arrived early so lots of time for cups of tea and typing my blog, looking round the stands, before Mark introduced me to Martyn Lewis. We chatted about hotel showers and had to have a piccie

And then it was time to start. The day was being filmed as well, which is always nice.

Mark started off the day welcoming everyone to the Brace Conference. The James Tudor foundation funded the conference ….he then introduced Sir Martyn Lewis. Martyn has supported the Brace Charity for the last 5 years.

He said we were here for the ‘news of tomorrow’………and ‘All research needs to be put into context’ as many headlines offer hope but reading the article offers little evidence. He then showed a very simple video which you can watch here……

https://www.alzheimers-brace.org/timesupdementia

Professor Clive Ballard from Exeter Uni, was the first speaker talking about Psychological Symptoms in people with or a risk of Dementia……..he spoke of there not having been any licensed treatment for dementia for over 20 years. He said we’d been very one-dimensional when looking at dementia – looking at memory issues – but maybe we should look further at depression and mild behavioural impairment as markers. He spoke of the research they’re doing with this in mind…… Precision medicine exists in cancer, why not in dementia?

….good that a different angle is being investigated even though they’re at the very very early stages.

Up next was Chloe Meineck talking about her Music Memory Box. She has worked with people with dementia to design the boxes. Each piece from the box is linked to a piece of music. A sensor is stuck on each piece so when they’re lifted out, they play the chosen music. Unlike some things, it can translate to any culture as it’s personalised to that person.

More can be found here:

https://www.watershed.co.uk/studio/projects/music-memory-box

After Chloe came researchers from Bristol Uni talking about their research on Connections between dementia and Oral Bacteria. Sadly I think the presenter was quite nervous or something and I didn’t understand this one as it was very confusing. The theory sounded very interesting re the connection with dementia but I couldn’t understand the detail…shame…

The last session before lunch was me being interviewed by Martyn….
It seemed to go down very well and I finished with my story of Billy……..obviously couldn’t type so can’t remember the detail.

Over lunch I signed copies of my book…….we seemed to sell a bucketful so that was so kind of people to buy it and to say such nice things…..

After lunch it was Tony Hall from Bristol Dementia Action Alliance about the state of play in Bristol.

“Dementia has no barriers and we’re not going to create any”

They seem to do an awful lot in this area and Tony was full of funny tales…….wasn’t quick enough to write them down as brain was starting to shut down…….

Nothing else typed as I was getting very tired and brain must have closed up shop…..

There were people from all walks of life at the conference – local NHS Trust, Community Health, Universities, Researchers, Health Care Service providers and many many more which was so nice to see. I had a wonderful day and met so many wonderful new people…….one person handed me a card during the book signing. I didn’t have time to read it until I was on the train. It was from an Occupational Therapist called Diana and the card thanked me for writing my book. Part of her message said……

”I work in a Memory Clinic ……and have students with me for several weeks. I always give them a copy of your book……….”

Amazing end to an exhausting day………..

A Day Away from the Four Walls……

Yesterday, I was so fed up with being stuck indoors that I was glad Cathryn Hart from my local Research buddies had asked me to do two local events with her. She had said I could opt out but I was grateful to be able to get out into the fresh air and be with people. My drippy nose and splashy sneezes had subsided so I didn’t feel as though I would infect everyone within a 2 yard area of me…….

She picked me up as planned from home and we drove the short distance to Hull Universities new Medical school….

We were met by Professor Thom Phillips who was conducting the session and had a cuppa tea or 3…….. My twitter friend Jane Wray was also there – Director of Research in the Dept of Health Studies at the uni – hope I’ve got that right.

A multi disciplinary group of professionals were in attendance to hear about the research collaboration in mental health.

We were in the new medical building at Hull Uni which was very swish and comfy but very cold….

Thom started off by talking about the role of the Clinical Research Network to enhance research across the locality.

Health in our local area is generally poorer than the average across England. The local population can benefit from research in many mental health areas.

A Trials unit has been established at the Uni.

Thom went through the role of the clinical research network. At the heart of the core is the increased opportunities for people to take part in research. Patients and public are at the centre of the role of the Research Network….

One aim is to allow the local people to have the benefits of research that they wouldn’t necessarily get access to. To do this there has to be clinicians as Principal Investigators to take a leadership in delivering the research. Local people can have access to different treatments, different ways of approaching a condition. The audience were here in the hope that they would be curious enough to learn more about becoming a Principal Investigator.

It was then mine and Cathryn’s turn – Cathryn has worked in research for 25 years.

We can offer treatments that would not necessarily be available. Research can be an extra and fill gaps when services are in short supply or waiting lists are long. Research active trusts have better patient outcomes than those that don’t. We need to address the inequalities in research. A smaller percentage of mental health patients take part in comparison to cancer patients because clinician are more likely to offer patients the chance to take part in research.

A new study in Humber is researching children with phobias and provided a wonderful quote of the day from the children and phobia study..

”We never ever, thought he would be able to walk with a dog in the street and Park. He has walked to school for the first time  in two years”

All because of taking part in research………

I was there simply as someone who takes part in research. My diagnosis is irrelevant. I was there to promote the participants perspective. So because I was still coldy I had to have a clip on mike just to be heard, which isn’t like me…….🙄😷🤧

Part of what I said was….

“Jo bloggs in the street may never consider that the word ‘research’ could mean social and technological research and have nothing to do with drugs. They may think research sound poncy and academic. But without research we can’t change the future….. “

There were many questions afterwards, one clinician said how 65% of mental health patients, when asked, said they didn’t want to take part in research……
In response I said how language used by clinicians is so important and if you ask people if they want to take part in research they’ll probably say no……if you ask them if they want to be involved in trying some new treatment or intervention programme , maybe they would have a different reaction and not feel so threatened.

After a much needed cuppa tea or two Tim Buscher spoke about SPARC – Social and Psychological Approaches to Research into Long Term Health Conditions.
He showed many funded research areas currently taking place.

 

Some fascinating studies – young people and suicide prevention and young people mental health services in general. There’s also many staff doing PhD s –
One on alcohol the workplace and policy, Tim’s own study on effects of compulsive hoarding, loneliness in men and women, Well Being intervention for young children……so a diverse range of amazing research going on in Humber that so few people know about.

Dr Adrian Phillipson and Dr Fleur Ashby finished off with the role of the Principal Investigator and the fears which prevent other clinicians who may want to get into research but think it’s too complicated.

I suddenly appeared one of his slide😳 with all his local team from RDaSH…..the aim was to show the amount of people who are there to help Principal Investigators…..especially new ones!

Fleur, from Barnsley spoke of her drug trial for alcohol dependent patients and the support she had.

During the Q & A session someone mentioned the difficulty in recruitment …….I chipped in here by saying I was gobsmacked at the amount of stuff going on in our region…So many members of the public would be totally unaware of the wonderful work being done in this area and therefore the possibilities of opportunities available to them…..me thinks they need to get this out in lay terms into local paper and radio to normalise hearing about this. To strip out the academic and clinical language and turn it into opportunities for Jo Bloggs on the street. This would in turn lead to more participation as it wouldn’t seem so fearful and academic and people would have had lay exposure to its existence…

I’m not sure the clinicians agreed with me, especially one whose face said it all…. but ‘research’ will continue to be this strange land until it becomes everyday knowledge……

Research is about finding out new things, new ways. We can’t change the future without research

Afterwards we went back to Trust headquarters for a cuppa before the second meeting ……well, in for a penny and I was there anyway……this time we were promoting research at the Humber Trust Patient and career forum.

By this time my tank was almost empty but luckily we were first up……Cathryn played a lovely film of people who had taken part in research in the Trust and then it was me…A bit of what I said was…..

“The Patients voice needs to be heard. Our opinions matter. How else will researchers know that the very method they’re researching works without us giving our views”……..

We made a hasty exit after our bit thankfully, but it was nice to see so many people from all walks of life and with a relation to many conditions being part of that group in Humber.

Worn out but happy to have been out and about…..

Dementia and Cancer….

Yesterday found me heading for Leeds Beckett University. I offered to be a monitor for this interesting study on living with dementia and having a diagnosis of cancer. The Alzheimer’s society funded research always have a team of 3 research monitors where possible on each project. Our aim is to encourage, offer advice and sometimes simply listen and share in their successes and challenges faced.

My 2 partners in monitoring for this project are Annabella and Anne

I was very lucky as the student undertaking the project lives close by and so was able to trundle me in her car instead of navigating the trains…..

And so it was that Rebecca picked me up at the agreed time. We had a lovely drive to Leeds and I was able to get to know Rebecca. She’s only just started her PhD and it’s wonderful to be involved with her at the start of her study. Today was her third day!

Her study is looking at the care and support needs of those in residential care homes who have both dementia and cancer.

We arrived at Leeds Beckett and had a cuppa before heading to the room. I was very impressed with Leeds Beckett as Yorkshire Tea is everywhere, even in the student cafe – so I’m glad to see education has got it right in Leeds…..👍⭐️🤓

We were met by my lovely Twitter friend Professor Claire Surr, Dr Rachael Kelley, both supervisors for Rebecca…..and Professor Alan White who has a special interest in Cancer. Can’t believe I forgot to take a group photo🙈

Anne and Annabella soon joined the party and we started off with cuppa teas and cake….

The aims of the project were detailed nicely in a slide

Rebecca’s background is marketing and public relations but has changed tack due to family connection with dementia and brings lots of different skills with her.

The project sits within the Themes of Leeds Becket and come under the theme of Dementia Care and services. It fits in so well with the other studies in hospital and Nursing home settings.

The combination of dementia and cancer throws up so many issues such as pain identification, symptoms being due to cancer or dementia and simply remembering you have cancer and many many more, making caring for someone a complex process.

Rebecca took us through her plans for her 3 years. She was very well organised which is a good start for any PhD!

Year 1 is a setting the scene year

I loved the simple way Rebecca laid out her slides with wonderful piccies to accompany.
I didn’t know what ethnography meant and found out it’s ‘observing’ and knowing what and how to observe but also knowing when to stop.

There’s a limit to the amount of time you have to spend on observing the experience of the person so there’s a limit to how many care homes you can visit so the limit has been set at 3- 6.

PhD students have the advantage of coming from the angle of learning and gaining access to e.g. Care homes, is often made easier because of this and they’re often welcome as long as they see a benefit and value in what’s being researched.

Year 2 – once ethics has gone through, was all about recruitment and had the cutest slide

They’ll also be a lot of interesting gender information that comes out of this. Professor Alan has an interest in gender and told us some wonderful facts which I wasn’t quick enough to type…..

The essence of Ethnography is listening to stories and observing , not interviewing.
Thinking of the location for talking and observing especially when interviewing supporters is important.

We then moved onto the role that we will play as Research Network Volunteers

We went through our expectations and Me, Annabella and Anne all contributed lots of questions and suggestions……there was so much enthusiasm and experience in the room that will be invaluable to Rebecca.

It’s only day 3 of her PhD so I could see her head exploding with the amount of information coming out of the meeting but I’m sure she will be so well supported and hopefully we too can be of help
.
We’re in the wonderful position of going through this amazing project with Rebecca but without the pain of having to do all the work. It felt like everyone, including Rebecca was on a high by the end of the meeting.

Professor Alan also came up with the quote of the day looking at all the cakes on the table……..

“I have a very strong will and a very weak won’t” 🤣😂

 

TV Recording with my daughter……

I was contacted back in June by local ITV Calendar news to see if I would be available early September for an interview at home. This is sooooo unusual for TV people to book so far ahead as often it’s a last minute booking as topics appear in the news.

However they were aware of it being World Alzheimers awareness month and obviously had plans, which was nice good to hear.

Anyway , yesterday was agreed and the bonus was that Sarah had agreed to do the piece with me. Their aim was to ask about the general stuff – about my dementia and how it affects my life and family, what I do to raise awareness, why I wrote your book, what I do to help my symptoms – all good.

It was a very dull and drizzly day so not very good for filming. We needed the sun to shine really but it wasn’t playing ball…..🙄

Sarah arrived early and the reporter Michael, from ITV Calendar news, arrived soon after and right on time……

As usual, Michael came armed with all the paraphernalia that accompanies a reporter but he was very respectful, setting up and moving things, making a note of where they were.
He was also very smiley and such a friendly person.

Once set up he asked me questioned around my coping mechanisms, the effect on family, my book and all the wonderful opportunities dementia has brought my way. He spent a long time asking questions and made me feel very relaxed. He asked what I would say to others and I’m sure I must have said this many times before but….

“It’s a bummer of a diagnosis, but if you look at it as the start of a different life, a life of adapting, it can make the diagnosis easier to handle”

If I say ‘bummer’ the rest of the sentence appears from nowhere. It was strange as I felt the old me next to me yesterday. It was a good day. We often talk to one another but I remember her presence yesterday. The reporter had watched many of the films I’ve already made and fed me key words that generated automatic answers from the automatic filing system in my head. I felt the old me being impressed and saying, ‘Wow, go girl’. As I said, it was a good day.

He then asked Sarah some questions around how we cope as a family and Sarah spoke about the importance we’d placed on talking. She was of course very good, but then I am biased 😊

He finished off by filming various bits of the downstairs – we’d already agreed that upstairs was out of bounds….and 2 hours later he left.

I’m not sure when it’s being aired but they plan to show three reports through the month, one of a couple where the husband is living with dementia, me and Sarah and finally a piece from the Hospital setting. It’s good that they’re doing something as there’s been little on the telly so far for Alzheimers month…..

As I’m typing this I’ve realised something devastating…..I forgot to take any piccies😳 – what happened there Sarah?!!! Instead I’ll put a piccie of Billy who had my company afterwards as I was on Billy duty…😻 hopefully I only fed him once……🙄

So that was in the morning, in the afternoon I had another go with Skype as I had a call with Young Dementia Research Network. Earlier in the year we held our first conference and today we were discussing the next steps and future conference.

Once again I couldn’t get skype to behave. It worked perfectly for all of 30 seconds but then I could no longer see people even though I could hear them and they could see me🙄

We spent over an hour talking, me to a blank screen 😶. We know it didn’t all go perfectly but it was the first and we learnt so much from it. The young researchers who attended had so many wonderful ideas that we want to build on them and include them in the next stage.

We have some very good plans in the pipeline for the future…….the Network is a wonderful resource for anyone that wants to learn more about Young Onset Dementia.

More details of how to join the Young Dementia Network here:

https://www.youngdementiauk.org/young-dementia-network

I hadn’t been anywhere to do either of these but I was exhausted by the end of the day. Maybe it was the Skype that finished me off – the frozen screen meaning I had to concentrate hard on voices for over an hour instead of having the company of animated faces……..