Journeying through Dementia Project……

Yesterday saw me at Bradford University for a meeting of the Steering group for this piece of research. We usually meet in Sheffield but today we were at my favourite uni of Bradford.

My area of Humber are part of this project so it’s always interesting to hear how things are ticking along as obviously I can’t take part.

It was the most gorgeous day and due to the meeting being in the afternoon I was able to walk from the village instead of having to rely on a taxi.

I expected the train to be hot but the one to Leeds was lovely and cool.

However………as many of you know, if there’s a problem on a train, I’m usually on it…..and today was no exception. We were trundling along fine until we reached the outskirts of Leeds……..and then we came to a halt. Signal problems so someone had been sent to check them😳😩

So instead of having 15 minutes to change I had 3 minutes🙄. Luckily I knew vaguely where it usually goes from so guess work paid off and the guard let me on before closing the doors🙃 and then we sat………and waited……….the we had a guard who announced that :

“Apologies for the delay but we’re currently waiting for a member of staff to arrive…….who happens to be the driver………..🙄”

People then started to get off and stand on the next platform so I also got off and asked a smiley person if they were waiting for a train to Bradford and so I joined the masses of 2 trains worth of people who were waiting for the next train.

So instead of a leisurely walk I was on a mission but still had a chance to take a couple of nice photos of the city square

I arrived to find extra security on the door of the department asking you to ring a number to get in😳 panic, as I don’t use the phone. But luckily it was the building I knew and had visited many times before and someone came out and allowed me in to reception and luckily someone had just arrived to find me – phew!

Everyone had already arrived and Gail Mountain, Chief Investigator, sorted me with a cuppa and lunch was also waiting.

Catherine Hewitt, from York Uni, was the chair and kept us on track marvellously.

It was fascinating to hear about the challenges faced in a project and hear analysts talk about their side of the study and seeing all the charts and data. I was actually one who spotted an error in the numbers – only because it wasn’t logical, I hasten to add😊

The journey back to the station was nice in the sunshine, and the train to Leeds was waiting – so far so good. But that’s when the pleasant day turned into a bit of a nightmare………train jinx struck well and truly this time.

I had ages before my train and initially it said ‘on time’, quite comfortingly……..then as the time got closer, it changed to ‘Delayed’. Lots of other trains were delayed as well😳.
No one knew what was going on and one person behind a desk said it hadn’t even left Manchester yet😩. I facetimed Gemma, as she was due to pick me up and said it was in a pickle at the mo and wait for me to txt.
Then the sign suddenly changed to being due at 18.03 – ok, I thought, I can cope as long as it says a time…….wrong…….18.03 came and then it suddenly disappeared off the board altogether 😱 It then reappeared and said ‘Delayed’
I now didn’t know what to do, brain in shut down. Facetimed Gemma and she calmly said, ‘Can you get to Doncaster’? – (trains run to Brough from Doncaster). Yes I could see a train was due and jumped on it. Thank goodness Gemma was around to answer her phone and she could think of a plan B for me.

I went through places I’d never been before but I was so relieved when we got to Doncaster. I then had a short wait for the train to take me to Brough where Gemma would be waiting😍

It was so nice to pass the familiar windmills…

However….🙄 the nightmare journey continued as when we got to Goole, the guard announced;

“Apologies for the delay but the Goole bridge is stuck open, so for now we’re stuck at Goole”🤕

Luckily they mended said bridge and we wended our weary way…

I finally got home about 8.30…….we finished in Bradford at 4😮 ……..Very thirsty, the first thing I did was make a cuppa…….everything seems fine with a cuppa tea.

Thank goodness I’m not travelling anywhere on a train tomorrow…..

The project:

“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.”

More can be found on Bradford uni website:

http://www.bradford.ac.uk/health/dementia/research/journeying-through-dementia/

A day at the Royal College of Radiographers…..

Back in February I was invited to attend a meeting in London at the Royal College of Radiographers by Dr Rachel Harris, another professional who I met via Twitter. The meeting was a workshop to discuss, ‘How best to engage/involve patients as stakeholders’.

Apologies for the long blog but remember it is my memory …..

The college is opposite St Katherine’s Dock, on the other side of the river, which I know well from the old Alzheimers society offices. Although it was a warm day, the sun had deserted us, probably feeling just as sad as me at the news overnight of the tragic explosion at the concert in Manchester😢

The car arrived on time and I couldn’t believe it took us nearly an hour to get from one side of the city to the other. We eventually got to some very familiar surroundings as we crossed Tower Bridge…

I was met inside by my twitter friend Rachel (professional education manager), and then a cuppa tea.

We were there to discuss how, as a profession, they engage patients in their work – how better to use our voice and influence their practices. 9 out of 10 patients see a radiologist in Acute settings so the pressure on their services are immense.. Chair of the current board of Trustees,welcomed lots of unfamiliar faces, which was good. They wish to promote research but also to hear the voices of people who use our services. No one knows how their processes work better than patients that they see.

“When you interview patients in their home they are no longer a patient, they become a person with a very valuable story to share”

Rachel set a rule for the day – ‘no jargon’ today. Rachel spoke of her personal experience and said ‘You realise as a patient, it’s different’.

No powerpoint today – just flipcharts and everyone had to move around to meet different people – perfect 😊😊and just how any event should be!

Everyone then introduced themselves – speach & language therapist, researcher, Radiographers, lecturer in radiographer, Consultant OT, Chief from NHS England, Therapy radiology, PPI from Devon, NIHR, James Lind Alliance, diagnostic radiologist, Person from Macmillan, medical physicist – People were here from all over the country, which was nice to see, many had been patients themselves. “You think you know what it’s like to be a patient but until you are, you really don’t”

The introductions took an hour, but it was a really useful hour spent to find out what viewpoint people were coming from and actually helped to understand some comments later in the day.
They need to become “Patient focussed radiographers and not equipment focused”

Our first question to discuss around the table was:

What do we want the term ‘involvement’ to be and what does it truly mean?.

Our table came up with – Real, Partnership, equally valid.

PPP instead of PPI as involvement could mean we’ll listen to the bits we want to hear, whereas Patient & Public Partnership should have more meaning.

They work in an environment where they see patients for a few minutes, so don’t have the ability to engage in conversation. But a smiley face and reassuring noises would go a long way in my opinion.

Question 2 – What will patients get out of being involved with the college?

I said it would Humanise the services – in a very technical, machine orientated profession, the human side is often not seen. So having an obvious partnership element would bring respect, comfort and reassurance to patients that they’ve been considered.

I think it has to be remembered that involvement can be formal but also informal.

We also like feedback, to know what changes our input led to.

Barriers – they spoke of ‘hard to reach’ groups, but hard to reach group aren’t hard to reach, they’re out there waiting to be asked, but in their own specific way, maybe in their own language etc. Sometimes it’s simply a case of making the extra effort and going to the patient and not waiting for the patient to come to you.

Formal and informal involvement – not everyone will be comfortable attending a meeting but looking at a leaflet in the comfort of their own home to say whether it appealing is equally important.

Someone said – “We value evidenced based over experiential evidence and we have to change that” Patient experience should be what it’s all about.

Their mission statement..

After a lovely lunch we all swapped round and had different playmates for the afternoon.

Which group of patients have little voice and how can we involve those who have difficulty accessing those people? How can we bridge the gap?

Use waiting rooms far more. Ask them!! Sometimes you have to go the extra mile and go to the community.

3pm……brain slowed down and fingers erratic on the keyboard…..

What training do radiologists need and what training do patients need.?

Derek immediately asked to change the word training for patients as it’s ‘support to speak out’ that people often need and I said to give patients the confidence and permission to say what they think and not what the professionals want to hear.

Patients need to teach pre qualification. Communications skills are so important. They could be a brilliant radiologist but if they don’t know how to talk to patients they could make the whole experience traumatic.

It was soooo interesting to be involved with a very different group of people who had different ideas and perspectives. It was a very different experience and discussion from my usual involvement meetings. They were almost trying too hard and not simply looking at the basics of being approachable and embracing the partnership of patient involvement.

Our final question of the day was What One thing should the college be focusing on?

Me – involving patients from the start in a culture of partnership.

From the conversations I had I got the impression that for many, ‘patient focus’ is a relatively new concept in radiology, hopefully soon it will become the norm.

I shared a car back to the station with Hazel, a Speech and linguist therapist. The driver was wonderful and knew all the short cuts around the chaos of the city and managed, against all odds to get us back to the station in time as Hazel only had minutes to spare.

As we crawled through the traffic, it never ceases to amaze me how they build such high buildings in London…there’s even a crane on the top of this one!

A wonderful day and so glad Rachel invited me.

Peer support day in York……

Monday saw me trundling to York for my monthly peer support meeting of Minds and Voices. It was a glorious day,so nice and sunny as the bus went past the Westwood..

I had the extra trial of remembering to take my suitcase off the bus as I was heading to London in the afternoon – alarm set.

Damian kindly agreed to pick me up from the station and once we got to the venue Emily was there and greeted me with a hug and a cuppa tea😊☕️

Everyone started to arrive and once we’d all got a cuppa I took a photo before we started of all the smiley faces.I should have waited a few minutes as 4 other people arrived and we had to get more chairs!!

We had 2 visitors today, Helen from the York Dementia Action Alliance and Charlie French from Trans Pennine express.

After Damian welcomed everyone Helen spoke about a small pot of money to be spent on project for dementia. She wants a panel of 2/3 people with dementia to decide where this pot of money goes. Elaine and Eddy both immediately volunteered. So people will be applying for funding and the panel will be interviewing them when they come and present their ideas.. Emily said they’d be more volunteers than places so names would go in a hat or see who hadn’t done anything before👍 I never volunteer for York things as I’m not in York anymore and it also gives someone else a chance to be involved.

There’s a GP meeting which has invited the group to speak. Brilliant! Again, more volunteers than numbers needed

Damian also read out requests from 2 researchers who were wanting participants for different things – one from York Uni around input from admiral nurses – those who havn’t and those who have. The other from Hull uni around a Mindfulness course.

So to the main event – Charlie French from Trans pennine Express.

We introduced ourselves and then Charlie introduced himself. His job is to make travelling easy. He’s the connection between us and the people who run the train service.

He explained lots about trains which we didn’t know. The trains are built to European specification – all those built after 1999 have to meet these specifications. They can only put the ramp at a specific set of doors. Only one set of doors has the safety clip. The accessible toilet is at the first class end due to the configuration of having to fit the amount of seats which is detailed by the government.

He gave the name of a web site which might be useful:

http://www.blueassistuk.org.uk/

for cards to show on transport – need to check it out as never heard of them..

The train company has little influence over design – it’s the Department of transport – so we decided we’d unlock the door for Charlie and lobby the Department of transport instead, with Charlie on our side. I’m shocked that train companies have no influence over design – they’re told what specifications need to be.

Charlie also said how small companies, like Hull trains have much more opportunity to personalise – hence now I know why I’m forever saying that Hull trains are brilliant.

Coming soon apparently will be some stations having screens that will tell you where to stand for disabled entrance etc.

Every train company has a disabled peoples protection policy. ‘Making rail accessible’ document. Every company rewrites one every year. The office of road and rail in conjunction with the train company produces this document. There’s an accessibility group – a collection of all the train companies, who work together. We need to get in contact with that group to help them rewrite!

Rail minister is Paul Maynard and is good at challenging the status quo.
They’ve got an inclusivity forum – Hull trains, Northern rail and Trans Pennine and hopefully Virgin – they don’t currently have anyone with dementia and Charlie invited us to be that person – brownie point!

He spoke about telephone contact and I mentioned not being able to use the phone. They’re trialling a system that is using an app that allows you to txt asking for help – brownie point remains in place.

Charlie was very informative and we’ve come away with lots of valuable information and options of people to contact. BIG brownie point

It was now lunch time which sadly meant I had to leave as I’m heading down for London, but I couldn’t help one last photo of York before I left..

As always, sooooo nice to see Emily and Damian, but even nicer to see all my friends with dementia.

Alzheimers Society Research Conference

Before todays blog, I feel I have to say how horrified and sad I felt on hearing about the bomb in Manchester last night. To target children is barbaric. I can’t imagine how those with loved ones who have died or who are injured are coping today, or the family and friends of those still missing. Love and hugs to all those affected.

😢

So last Friday saw the second of the conferences for the Alzheimers Society. Following on from the annual conference came the research conference. Sorry for the long blog, but remember, it serves as my memory as well,,,,

The day before had been verrrrrry long so I wasn’t holding our much hope of being any use but at least I was just listening in theory…….

I arrived to find a much smaller, less chaotic day unfolding. There were still almost a couple of hundred people but it was much less than yesterday. I arrived to find a cuppa tea and then went and sat with Barbara, Sandra and Lyn from the Yorkshire A team of network volunteers.

Doug spoke about what we’ve achieved since 2012 and what the future holds.

He showed a great slide of how much we’ve increased investment in research -spending has tripled. It was sad to see that the number of research network volunteers hasn’t tripled but I know there are plans afoot to put that right.

The biggest success for me is the introduction of the Dementia Research Leaders programme, especially the Doctoral training centres – investing in the researchers of the future.

The future over the next 5 years looks very exciting. They will announce 8 centres of excellence with the first 3 being research active in 2017/18. They’ll be launching them in the summer.

Next up was Prof Paul Mathews from Imperial College London. He’s part of the new Dementia research institute. Looking for earliest changes in Alzheimer’s disease with UK Biobank. How can earliest stages be diagnosed accurately? We currently diagnose based on symptoms and signs, It focuses on the disease after it’s presented.
Maybe we should look at it differently – looking at what makes people susceptible to the disease.

There’s much good work being done in imaging, especially by Nick Fox. Far more sophisticated ways of identifying and giving far more accurate diagnosis.
A tad over my head but sooo interesting for the bits I did get ……..he went way over his time which I never find acceptable as they should time their talk just the same as everyone else so it doesn’t throw the rest of the timetable……..end of moan….

Cuppa tea time and I was able to look at the posters, one of which was a collaboration between me and phd student from Bradford’s Doctoral training centre, Courtney Shaw

I was also able to have a nice chat with the lovely Mel Hall. I was a monitor on her research with Prof Pat Sikes at Sheffield.

After that it was time for a get together of the Research Network volunteers and Anna Grinberg-Saull opened the session.

Doug Brown said how unique we were in the charity sector for having the research network volunteers.

So now a Q&A session. Many questions were asked and many of them wanted reassurance that non biomedical research wasn’t going to be sidelined for biomedical research in the new Dementia Research Institute. Doug tried to be reassuring in his response and said we needed to make sure we recruit quality research and researchers to ensure we have collaborative working. They want to bring established researchers into dementia – e.g. A sleep researcher who understands what happens to the brain when we sleep would be ideal – When we’re awake we’re damaging our brain and we know how, for people with dementia, sleep is often disturbed – I know that first hand as my average is 3-4hrs per night of sleep/wake/sleep/wake, my eyes wide open behind sleeping eyelids.

Next question was around how are we going to develop the network volunteers and increase numbers. Anna answered how they’re undergoing a review of the whole service and will be looking for feedback and involvement of volunteers.

Someone then asked how are we going to encourage more members to become monitors. I personally find this the most rewarding part of the role. Meeting with researchers and hearing their trials and successes is amazing – would recommend it to anyone.

The final question was around poor communication. Doug answered how it’s the top of the list to get right. The symptom of the society growing quickly means we’re now in the process of upgrading IT systems so they’re joined up, which is much needed. Communication is a mission in any organisation.

Final workshop before lunch was Innovation and demonstration a showcase by Ruth de Saints Croix, innovation and research development manager introduced the session.

We saw 3 projects, Barry Smith from Northern Ireland was the first and his project was around Deaf and dementia. Sadly he spoke far too fast for me and having a northern Irish accent meant I couldn’t follow enough to understand the project, but I’m sure it was a very useful service for those deaf who also have dementia.
Emma, who is deaf and from Manchester Uni, signed her talk while someone spoke the words on her behalf. The process of consulting with deaf people had never been used so they had to consult with them on the best way to work together. Great talk.

Fidget Widget Toolkit was next for people affected by later stage dementia. The idea of the project is to de stigmatise fidgeting in relation to dementia.

Dementia Friendly General Practice Project was the final project. They’ve moved from innovation to implementation.
After a lovely lunch it was time for my last workshop.

“Which type of dementia. – Getting a differential diagnosis.

Dr Mario Parra spoke of Mapping cognition onto the continuum of Alzheimer’s disease. Many tests in the early stages simply don’t pick up changes but he is looking at identifying subtle changes before symptoms become apparent. Another speaker who spoke very fast and lost me totally but the slides helped me follow.

Felicity Guest from Exeter – Learning Key factors for dementia diagnosis. Think this phd student was trying to follow the example of Dr Mario and spoke very fast again and I didn’t understand it but it was 13.49 – almost the switch off hour of 2pm – after 2 very long days….so it was probably me.

Riona McArdle Newcastle uni talk was”

‘Is gait a useful bio marker for dementia diagnosis?’

I suddenly woke up again….

Different dementias present in a similar way which leads to high rates of misdiagnosis. So researchers are now looking at blood markers, imagining markers, but Ríona is looking at walking. People with neurological diseases walk differently.

There’s lots of research on cognition and walking. ‘We know that people with dementia walk differently’ I’m looking to find a unique pattern. “

She showed us film of 3 different people walking and you can see the difference but the technology they use picks up the subtleties. There was a marked difference in someone with Lewy bodies compared to someone with Alzheimers, but you could see the person with Alzheimers walked differently to the control person without dementia.
The walking changes are walking changes in the brain. There is other research going on with imaging and gait. Fascinating subject, as me and my daughters have quite clearly noticed changes in my gait but my clinicians say it’s unrelated to dementia….mmmmm

Note to speakers – talking very fast in order to cram more stuff into your talk is not good if it means I can’t follow the talk..

I was going to stay for a final plenary talk but my brain was frazzled after 2 wonderful informative days. I was present for the first 15 minute talk but I didn’t even type what it was so I then decided enough was enough and made my way to the station.

A great 2 days and I had lots of people looking out for me making sure I was ok. The best thing of all was seeing so many old friends and meeting many new twitter friends………ready to hibernate now…..

Alzheimers Society Annual Conference Part 2….

Following on from Fridays blog…………

We got ourselves settled and Bill Turnbull, compare for the day, started off the afternoon by introducing Prof Sir Malcolm Grant, Chairman of NHS England.

The NHS is one of the most admired systems in the world. We just need to change the way it works though, away from acute care leading to death, to teaching us how to live with long term conditions.
“Dementia is a public health problem’. What would happen if we pooled the budgets – just as they are doing in Manchester ? he asked……seems an obvious answer to me…

Next it was panel time – with various questions been thrown up by the audience.

City services may be there but for those with dementia living in rural communities, services are non existent
Training and awareness of all healthcare professionals to understand dementia is key – ‘treating someone with dignity doesn’t cost anything’ said Kathryn Smith from the Alzheimers society.

Someone asked how EU grants for research would be affected by BREXIT? Prof Bart answered by saying that we will hopefully have a clearer idea once the election is out of the way. We have many academics sharing resources, it shouldn’t matter which country they’re from as all are working towards a better life with and without dementia. Many comments from the audience expressed concern that negative things were happening already at ground level – very sad.

Care home workers need to be recognised as qualified and treated as professionals for care home standards to raise. The biggest group of under rated are the millions of unpaid carers.

Next parralel session was by Matt Murray Co-production in Dementia, Principles, benefits and challenges.

On the group was Keith, Jan Oyebode & Gill Findlay. They showed the participants view, researchers view and commissioners view of co-production.
Keith started by giving his personal view of co-production as a professional and a person with dementia. Even 20 years ago, as a headteacher, he involved children during interviews for teachers.

There’s no ‘I’ in Team – Keith said and co production sits firmly in team work.

Keith then handed over to Prof Jan from Bradford Uni and gave the Researchers perspective. Research which is co-produced is better than that which isn’t. Everyone brings their own expertise.

She spoke of Co-designing Dementia Care bringing together all stake holders to improve services that would make a difference – I’m on the steering group as a person living with dementia.

It’s now 15.50 so way past my brain time closure of 2pm so notes have become sketchy

Following Jan was Gill Findlay from Durham to give us a commissioners perspective.

Gill said – think of me as a personal shopper – a personal shopper for health services – I liked that😂

The final session of the day was ‘Rising to the Challenge of dementia this General Election.
It was a husting to hear what the main political parties will do for dementia if elected. Angelea Ripon was chair and the political parties were represented by Jeremy Hunt, Baroness Joan Walmsley, Lib dem and Lord David Lipsey representing the Labour Party.

Baroness Walmsey, Lib dem, was first – immediately lost brownie points by using the ‘sufferers’ word,more than once so I stopped listening.

Lord David Lipsey was next, Labour,Jeremy Hunt finished off.

Each had 4 minutes to say what their party would do for people with dementia if they were elected.

During the day we’d all been asked to submit questions and mine was lucky enough to be chosen as one of the 5 questions. My question was last. I asked:

‘What will you do to address the injustice of regional variation in care and diagnosis”

All 3 gave an answer and then Angela asked me if I had anything to say in response. I said:

“Unless I missed something, no one answered my question’

My response generated much laughter and applause and Angela made them all take another minute each to come back and answer the question properly……..very funny……I just said what everyone else was thinking….

Bill and Jeremy brought the day to a close. Bill was the perfect compare for the fabulous day.

The Gala dinner was very nice but it had been a very long day so had to admit defeat after the main course. Fascinating conversation round my table as I was sat with the sponsors of the meal and more interestingly, next to a Consultant and a Gp………….but that would Require a blog all of its own😊

Alzheimers Society Annual Conference 2017 – Part 1


Yesterday saw the first of 2 days in London with the Alzheimer’s society. Thankfully the torrential rain of the day before had disappeared briefly and the day was very different and thankfully dry for the short walk to the venue. I’d found the venue the night before thanks to a lovely shop owner who came out in the pouring rain to show me.

I got to the venue and immediately spotted the lovely Jane Cotton who then sorted me out and then Hilary, Keith and Rosemary soon arrived and we were shown into the quiet room to meet ex BBC Breakfast man Bill Turnbull who was due to interview us on stage.

We were miked up and had a test run with Bill Before the room started to fill.

Bill Was the compare for the day and got the event started…

Jeremy Hughes was the first speaker of the day.

This is the biggest conference we’ve ever had, uniting all sections of the society, including research. We’ve achieved so much in the last 5 years, more than ever before. We still have third of people undiagnosed with dementia. This wouldn’t be acceptable with cancer so why is it acceptable with dementia, said Jeremy.

Rob Burley was then introduced by Bill – the Director of campaigns for the society talking about the largest consultation ever undertaken with people with and about dementia.
Of the findings 56% said if they were diagnosed they would feel their life would be over.
Ben Page Chief Exec IPSOS Mori then spoke of the challenges his company faced undertaking the work. The depth they went to ensure full inclusivity.

It was then our turn to launch the new DAA ‘We’ statements.

We had a nice red sofa to make Bill feel at home. The five of us on stage were Sheilagh, Alex, Joy Keith and me. My statement was the last:

“We have a right to know and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.”

Luckily my twitter friends provided a photo

The 5 new rights based statements can be found here:

http://www.dementiaaction.org.uk/news/23236_news_launching_the_dementia_statements

Hilary Doxford then did a brilliant job launching the Three Nations Dementia Working Group of which we all happen to be members.

Prof Bart De Strooper, Director of the new UK Dementia Research Institute was next. He spoke of the world wide problem of dementia.

He showed the 6 universities who will contribute expertise, but it’s also important to use all expertise around the country so I hope many more will be involved.

The future looks bright – wish we had a remote to fast forward.

Next up was a cuppa tea. Someone kindly  got me a cuppa and the chaos made me escape to a quiet room before it was time for the first break out session:
“Integration: Health, Social Care and Housing: Opportunity or threat for people affected by dementia. Rob Burley director of campaigns introduced this session.

Viccie Nelson was a physio in Australia and is now Programme Director Care Home Vanguard Sutton.

Vanguards are test sites to test new models of care.

Viccie spoke of The red bag scheme, which is a transfer bag people take with them when they go to hospital. But this will only work if the hospital then uses it and the ward looks in the red bag, which, from what someone said in the audience, doesn’t always happen.

Hazel Blears followed Viccie about Greater Manchester Devolution – dementia united delivering transformational care. Manchester is the only place to have an integrated care budget.

Hazel spoke of her mum being admitted to a care home in an emergency being able to eat and drink, when she came out a while later, she could do neither. From all the stories I hear a care home would be my worst nightmare – there has to be an alternative. We have to put more resources into keeping people happily living in the community if this is their choice.

Jeannette Leach from Rochdale finished of by talking about Dementia United and it’s 5 pledges – To improve lived experience, Reduce variation, Key workers, Co-Production and Technology adoption……

All this is wonderful for those who live in that area. The post code lottery of wonderful work is a huge problem for me. The fortunate few are hugely benefiting but the rest are lagging behind further and further.

Lunch was very nice but it was vital to find the quiet room again as the noise had got to the roaring stage and was really unpleasant. I wanted there to be a ‘pause’ button so I could freeze the room and wander round to see who was there as so many people were saying hello through twitter and there were so many familiar faces that I wanted time to see everyone.

Final part on Monday…….including what happened when the 3 main political parties were held captive to answer questions………and my question to them all………..

Developing a City of Research..

Yesterday started off on home ground at a conference in Hull. Cathryn Hart – Assistant Director Research & Development, Humber NHS Foundation Trust – had asked me ages ago if I would do a talk entitled ‘Why get involved in research’, at their first celebration conference which will hopefully become an annual event.

Gemma is part of this wonderful research team so it was nice not to have to rely on taxis and have a lift from my daughter!

I was only able to stay for the morning as I was travelling down to London at lunchtime, and the day started off very wet and miserable. However, my mood was instantly improved when we arrived as I was met by Cathryn and all the team of smiley faces, and a cuppa tea, of course……….

There must have been well over a hundred people in the room from all different specialties and many people said hello. Sharon Mays, Chairman of Humber NHS Foundation Trust stared off the day.

Today is International clinical trials day as well as it being dementia awareness week. Sharon spoke of today as being a day of celebrating the good work done in the Trust.

We then watched a short video highlighting the achievements of the last year.

Lots of the film were complimentary comments from Trial managers that the research teams have worked alongside.

Next up was Professor Allan House from Leeds University – Professor of liaison psychiatry.
He was speaking of research in psychological medicine. He said he didn’t like the idea of being the Keynote speaker, so to control his nerves he thought of himself as the warm up act for the next speaker……….😂 must remember that one……..
He started off by saying that people with cancer do far better if they’re part of an environment of research than if not, and wondered if this was the same for mental health patients…….the answer seems obvious to me but sadly the offer of research isn’t always there.

He showed a picture of the Leeds General Infirmary, which was lovely to see again as I used to work there.
He was talking of research into those that self harm and was asking whether the current treatment is appropriate. So many services are managed and commissioned in different ways, which as he said, just doesn’t make sense – integrated networks make far more sense.
Next up was Prof Barry Wright from York Uni and part of Hull York medical school. He was speaking about child mental health research. They focus on 2 main strands of research
Deaf children’s mental health & Diagnostic instruments for Autism in deaf children study
AND Main child mental health research centres. With lots of children’s research studies we tend to use the adult approach and transfer to children but it really doesn’t work. So they’ve set up child oriented interventions designed for children. So their PPI work involves children making animated films for them to say what works for them. Children have to be involved in design etc but in an appropriate way – not rocket science but often forgotten.
He spoke of some wonderful studies – writing children into stories about themselves to help with social behaviour and another study that involved lego. All sounded wonderful. They want to evaluate interventions to prove success is affordable to commissioners. Very interesting talk.

They have several members of their team who are deaf themselves, which is anything but tokenism – marvellous.

Time for a cuppa tea was followed by me. I spoke about being involved with researchers gave me back the sense of being valued, how professionals should normalise talking about dementia and my love of working with students, after all they’re the researchers of the future. They have so much less baggage and pre conceived ideas. They can help change the future of dementia, to change views, perceptions and reduce the stigma around dementia.

So nice to be at a local conference With the aim of developing a city of research not just a city of culture for Hull


Before I knew it I was whisked away to the station to head for London. A lovely volunteer driver drove me there and he was early so received one of my rare brownie points. He told me of all the countries he’d worked in and different jobs he’d done all over the place and he’d then become a volunteer driver for the past 20 years……..He must have been at least 150 to have crammed all that into his life😊

Once I got to London and settled in my hotel it was time for an hours tweetchat on the subject of why research is important to patients – seems to be a theme for the day……

Dear Dementia………..

I published this blog last August but Dementia awareness week seems a good time to reblog

Dear Dementia,

We have to sit down and have a heart to heart………..

I preferred my life when you weren’t apart of it but now I can’t live without you – sadly – but there’s no need to be with me 24 hours a day. I’d like some time on my own please. You’re in my thoughts – constantly….however, sometimes I’d like to forget about you and you me, and return to days gone by, before you’d entered my life.

I know we’ll never part, and I know some days you’ll be insistent on making your presence felt, but some times it’s just nice to be single again and roam around and mingle like you weren’t there……to have conversations that don’t involve your name; not to have to think of plan Bs to accommodate your presence……..to simply be me…..without you…….

Some days you can stifle me into submission. On these days I accept we’ll just sit together and while away the time until you feel able to leave me alone once more.

If you ever feel you’ve made a mistake and want to leave me forever, I’ll be happy to wave you off and wish you well………….

 

Dementia Awareness Week…..

This week is Dementia Awareness week. Have a look to see if there are any local events near you and find out more about dementia.

I’ll be at the Humber NHS FT Research Conference on Wednesday.

Thursday I’ll be at the Alzheimer’s Society Annual Conference where we’ll be launching the new I Statements and the launch of the 3 Nations Dementia Working Party.

Friday is the annual Alzheimer’s society Research Network conference.

Where will you be? Nothing is too small to raise awareness, simply talking about dementia is a good way to get involved.

More can be found on the Alzheimer’s society new look web site:

https://www.alzheimers.org.uk/info/20167/dementia_awareness_week