Category Archives: Research

Double act with my daughter Gemma to the U3A…….

So yesterday I was on home turf with Gemma as we were doing a double act at the local U3A meeting. It had been planned for ages and I was to talk about the usual stuff and Gemma would talk about research in Humber NHS Foundation Trust, for whom I’m their Patient Research ambassador.

U3A, stands for University of the Third Age but has nothing to do with UNiversity……their vision is to:

“make lifelong learning, through the experience of U3A, a reality for all third agers.”

We didn’t get home from the theatre until after 11 the night before so I was so glad we weren’t due there until 1.30……….

At least it was dry today so the walk from the car park meant we didn’t arrive bedraggled as we were carrying Join Dementia Research leaflets and a banner etc………..🙄

We were met by one of the committee who immediately sorted us a cuppa tea😇 while everyone began to arrive. She told us not to expect many as it was half term and numbers were always down then…….however…….the room was just about full by the time everyone had settled and there must have been about 100 people👍

We were introduced as me and ‘Gemma, my daughter, who was just tagging along’ as we thought that might immediately bring a smile to their faces………..and it did……..
I started off with all my usual stuff first including adapting, moving , talking etc and hopefully threw in some humour every now and then.

Gemma then took over and talked about the research taking place in our local area and dispelled a few myths. I know I’m biassed, but she was brilliant……….

I finished off talking about the Advantages of having dementia 🙄 and about my book. They were generous in their applause and we had a queue of people coming up to both of us afterwards. Many people took JDR leaflets and they even offered to put them out again at the next meeting. They said some really kind things and it became apparent that many of them had twigged I’d been on TV and radio recently but just hadn’t realised it was me coming to talk – phew! – they might have been fed up of hearing me and not turned up if they had😳

The people afterwards came with many questions and stories, mainly of friends being in denial, which was sad, but also of queries re adapting and coping. The main consistent thing that came out was that people often talk to others, to friends, to strangers but rarely to each other…..seems like we need to normalise Talking –  hopefully they found my talk useful.

Afterwards Gemma had to take me to the station as I was heading for London as, on Friday, we were due to be live on the BBCs Victoria Derbyshire, but instead, due to another story they’ve been following, we’re going to record our programme to be showed at a later date. Normality quickly resumed as my first train was ‘delayed’ and then ‘cancelled’…….🙄🤦‍♀️🤐…..

A Day meeting students at Bradford Uni…..

Yesterday I’d reserved on my calendar for some normality after all the chaos of the last couple of weeks.

I was there as an Alzheimers Society Research Network Volunteer to hear the progress of the Doctoral Students at Bradford University, along with Sandra and Viv. I would also be meeting Barbara Woodward-Carlton for the first time since she gained her MBE. Barbara and Sandra (with me chipping in every now and then) are running an event in York in March around the students and others and many people with dementia, including my playmates from Minds and Voices – very exciting!

However, back to yesterday. It was a silly o’clock start as the 3 of us needed to meet prior to the main event to talk about the Agenda for York and basically have a hug and a catch up.
It was very cold and I woke up to a white world in the village, so it was definitely ear muff weather – wish it had been light as it would have been a very nice photo, but you’ll have to take my word for that🙄

When I got to Hull I just had time to get a cuppa to warm my hands🙄 – any excuse…….
The train from Hull behaved and was on time. The snow was very patchy and was non existent in Brough, just down the track😳 However it reappeared in Bradford and even though it was sunny, it was bitterly cold as I perfected my impersonation of Bambi walking up the hill towards the uni.

I settled myself in the Atrium to wait for the others….

I love the photo of all the female profs – it’s called ‘This Prof CAN’

Soon I was joined by Barbara, who was also frozen……and then Sandra who was equally frozen.

We went across to the Bright building to find everyone ready and waiting and had lots more hugs and catch ups. Clare Mason shown me the way to the tea corner👍 they even had a sign with “yorkshire tea’ written on it🤣

Me with my partners in crime, Sandra and Barbara

We went around and introduced ourselves as it’s a while since we last met.

The Students, Ahklak, Suzanne, Denise, and Angela, Lecturers/supervisors and us were all there. Clare Mason was also there to talk about further PPI Involvement.
Barbara chaired and tried to overlook the item on her agenda which says, ‘Celebration’ but we weren’t going to allow her to miss her moment of shining superstar and Murna gave her some gorgeous flowers.

Then onto the main meeting.


They want their students to come out understanding the importance and how non negotiable it is to include people affected by dementia in all that they do 👍🏆

I said I’d turned down the offer to go in the hat to go down to Number 10  as Bradford Uni and normality was what I needed today…….The lovely Joy Watson is going to represent the 3 Nations Group and I’m sure will do a wonderful job.

We spoke about writing an article re the evolvement and continual evolvement of the partnership which makes this so special. Our roles spill over into other capacities. Murna spoke about other opportunities – jointly presenting at conferences, etc…….

We briefly hit on ethics…..and I piped up that it should be an offer of choice and discussion and making people aware of the consequences of going public and sharing their story. People shouldn’t automatically be thought of as needing ‘protecting’,,,,

Should research stray into activism? The blurring of professional boundaries was a really interesting discussion. The richness of our group is such that it could show the general public that research isn’t purely academia – I said the public so often don’t see the connection between practice and research. If there was more awareness and partnership, research would then be seen differently by the public.

After lunch we had Speed dating with the students🤣😂🤣😂🤣

So they had 10 minutes on a 1 to 1 with each of the monitors

AKhlak was with me first – he is looking at How South Asians families cope with the changing needs in care and how they manage these complexities.. Dementia doesn’t descriminate so why do services? Fab research.


Lovely photo taken by Prof Murna😊

Angela – a nurse by background is focusing on the role of the nurse in hospital and care Home setting in optimising the transition from hospital back to nursing home. There’s an assumption that people going back to care home are adequately looked after, which isn’t always the case.

Suzanne – is looking at the quality of the medication systems and processes during transition between care home and hospital and in reverse.
Safety, effectiveness and timeliness, efficiency and person centredness and equitability.

Denise – finished off. Couples who live together at home – one with dementia and co-morbidities. How they go about daily activities, how daily life evolved and what do they feel about it. Denise gave them a camera and asked them to take a picture of their daily life for a month. Some people have never taken pictures so found it difficult. Some people only wanted to take pictures of the good days, which was interesting. Images are so powerful and enable people to bring conversation into relationships.

Oh wow! The 10 minutes, went so quick as the conversations were so wonderful. They’re all so enthusiastic. 10 minutes was so little time but it enabled them to focus and it left me wanting to know more. Condensing their ideas in 10 minutes is a great skill to learn.

We then finished of with our research networks volunteers meeting with Prof Murna and Prof Jan.

We discussed the value of having lay people involved. It not only allows researchers to moderate their language and use everyday language but it also brings different valuable perspectives to the table.

Many Universities struggle to see the advantage of full involvement with the public but the richness it brings to Bradford is invaluable – if only we could bottle it…….

Research and Development Group – Humber NHS Trust…

Yesterday I was local at the Humber Trust for the quarterly Research and Development group. I attend as their Patient Research Ambassador

Cathryn Hart picked me up on a cold icy morning. She’d just had a scare and had skidded coming slowly down the hill so we set off very gingerly. Turned out to be the right move as someone ahead coming in the opposite direction was going round a corner and also skidded🙈😱 I quickly txt Gemma to warn her about the black ice and Cathryn warned her hubby!!

We arrived at the headquarters and Alison immediately appeared from nowhere with a cuppa😊.

Cathryn gave me my latest award from Humber Trust this time which she and Alison had collected for me at their award thingy last week


Love how it’s got the word ‘smile’ on it😊

We walked down to the room with my cuppa and started with Cathryn chairing as there were many apologies.

Cathryn spoke about the Trust exceeding their targets and the wide range of portfolios they have.

Alison gave out the latest newsletter which they’d kindly gave over to a chunk about me🙄


Hadn’t noticed the ‘Dare devil’ in the title until now…🙄🤔

After the formalities of that meeting it was time for the Research Interest Group. Three of the research assistants were able to join us which was really nice as it’s good for them to hear what research is going on and the findings.

We were joined by 4 people who had come to talk to us about their research. The first one was on Perinatal Mental Health Research and Development. One was a research nurse and the other a research fellow from Hull Uni. They spoke of their collaborative projects.
Much work has been done in the area of identifying professional training needs and helping primary care practitioners/health visitors/midwives identify and predict women with mental health issues during pregnancy.

They’ve held a Perinatal mental Health conference which was a succesful event. They now have a Perinatal mental health module at degree and Masters level.

They spoke of their next project hopes – all really fascinating

My new word of the day came up at this point – Tokophobia – women who have a severe, extreme fear of child birth…….if you asked pregnant women which of them were afraid of the birth, 99% would probably say yes which is natural, however some women have such a fear that it impacts greatly on their life, so they would be classed as Tokophobic.

Soooooo interesting……….

Finally it was the turn of 2 further researchers, one being Jane Wray, Director of research from the School of Health and Social Work Faculty of Health Sciences at Hull Uni. It’s a new Faculty.
One part caught my eye was ‘Social and Psychological Research into Long Term conditions – every day life with long term conditions – ageing well and dementia care’ with Professor Liz Walker and Prof Esme called SPARC for short………..
Some fascinating studies going on in staff being supported to do PhDs – alcohol in the workplace, hoarding……….
Clinical Psychology Doctorate are also doing some wonderful research – Positive psychology in dementia care also caught my eye by Emma Wolverson……

They’re also on Twitter – @FacHealthHull!! And it turns out that Jane already follows me on Twitter and reads my blog😳…..small world…..

So much wonderful research being done in my area………..great use of my time today…

Last trip of 2017 to London…….

Yesterday was a double whammy of meetings in London. The first being with Chris Jayne, Keith, Rosemary at a hotel near Tower Hill to discuss the logo of the 3 Nations Dementia Working Group with Vivienne Francis – Director of Marketing and Communications for the Alzheimers Society. We’d asked for their help in order to make sure we were doing right by all 3 nations as we hadn’t realised what a minefield a logo could be🙄
The second meeting was at the Esme Fairburn Foundation near Kings Cross with the Young Dementia Network.

I hadn’t been feeling too good for the last few days so it was a good job I’d organised everything at the beginning of the week as it was a silly ‘o’clock start. The taxi came for me at 05.30🤐 for the first train of the day at 05.58. However, the bonus was that it was my favourite train company – Hull Trains. They have the most helpful, friendliest, smiliest staff of any rail company.Obviously it was very dark but the Christmas lights kept on overnight in various homes kept me smiling. I sat and played Solitaire to try and stir the weary brain cells……..

I’d gone decked for the cold and snow but stepped out of the house to find the bitter cold had been replaced by something a little less cold. I’ve recently discovered some new best friends – ear muffs.
Not only do they keep my ears nice and cosy but they dull the noise – result! I remember the girls, when they were little, having ear muffs, but they had elephants heads………I went for plain ones to save them huge embarrassment🤣

I headed for Tower Hill and had printed a walking map to get me there. I was loitering outside a hotel when I saw Keith and Rosemary walking towards me. We went inside and then saw Chris and Jayne and Kim already there. So after hugs and a catch up we dialled in to get Adele who was over in Ireland.

Vivienne Francis joined us soon after. We went through all the different routes we could go down for the logo. We mixed and matched images and ended up with a vague shortlist which would be adapted, so nearly there………

We then had time to simply chat and catch up for an hour which was so nice as we rarely see each other and have time to draw breathe so today was a bonus before we headed off for the next meeting at the Esme Fairburn Foundation where the rest of the group was staring to arrive.

Over lunch we had another catch up and time for a piccie of me Jayne and Chris as we were sat together. Donna had made sure there were tuna sandwiches after reading my blog……bless😊

It was lovely to have so many at the meeting. Tess started off the proceedings. It’s 15 months since we launched the Network and it’s going from strength to strength. As of Monday we had 1118 members. Through the sign up to the Network Donna has been able to bring together Occupational Therapists who are interested in Young Onset.

We’re being approached from all angles to talk about Young Onset. We had feedback from the UK Congress session we did on research and people wanted research into health economics, employment costs, and much more understanding amongst GPs, lots about connecting up, requests to set up events in different geographical areas. Donna is doing a great job at connecting professionals and promoting the network.
Rachael Litherland said how DEEP groups could be encouraged to join the Network if appropriate.


I’m sure Rachael wasn’t talking with her eyes shut……😊

Peter gave an update on the 2020 Citizens Engagement Panel and the findings from the initial survey. 606 people completed the survey but only 94 were people with dementia which is disappointing. Many interesting stats revealed, some quite shocking, but not a surprise to us including 2 in 5 were told what would happen next at point of diagnosis, 2 in 5 rated support as good but 34% said no support was given. The aim was an initial look at how government policy is affecting people on the ground. Me thinks we could have saved them the trouble and told them but I suppose they needed the evidence…..

Sadly the questions asked were put together by the Dept of Health and not by professional researchers so the answers are skewed and could be misinterpreted. It is however a stepping stone and just shows how everything isn’t as rosy as the Department of Health thought it was.

Keith then updated the group about the 3 Nations Dementia Working Group. Our first primary cause is Human Rights and rights in general. He brought up the filming we did in the hour before promoting the GP toolkit developed by the Network.

Rachael Litherland spoke of the projects in Yorkshire around how to make rights real. She spoke of the ‘Right to get out and about’ project in Yorkshire which Minds and Voices were involved in; the Blue badge project of the Scarborough group. And of course a conversation about Rights wouldn’t be complete without the mention of PIP….

Great to hear that late September will be the next Young Dementia Conference in Birmingham – more details to follow soon.

After a much needed cuppa we finished off the afternoon.

Kate Gordon is the Young Onset Dementia lead, Older Adults Faculty, Royal College of Psychiatrists joined us. Kate is responsible for rewriting the Young dementia report for the college as the current one is over 10 years old 🤐. It’s aimed at consultants or people working in the field. It’s aim is around providing evidence for others to follow around good practice. What was disappointing was the lack of involvement of people with dementia and this was made vocal by the group. It wasn’t clear what the purpose of the report was and what its value would be. There was a lack of consulting with many other groups of professionals yet their aim was to come up with evidence of good practice…..………..fundamental problems exist sadly…..🙈
I’m not sure much of our concerns were taken in and understood…….I sat there feeling like I’d stepped back in time…….my fingers typed but my mouth couldn’t say the words In time before we moved on…

There then followed updates from the workstreams but it had been a long day and brain cells started to go to sleep……..so not much more typed………

“Consistent inconsistencies” was the quote of the day…….can’t remember who said it but spot on…..

Nice to see the ‘Decision making Guide for GPs’ is now endorsed by the Royal College of General Practitioners.

Last full day of 2017 complete…..only 2 local meetings to go before a break……..

Last trip of the year to Bradford….

At least there’s one advantage travelling in the dark this time of year……….Christmas light spotting…….I’m a christmasholic and love to see the lights twinkling even it was blowing a gale and rainy outside………

The taxi was early and as we drove though the village it was nice to see the village pond all lit up and a welcoming santa and Christmas message 🎅🎄…….

It was amazingly windy but the early taxi meant I caught an earlier train into Hull so had time to trundle off to Greggs for a cuppa……..

No piccies as it was also throwing it down and not quite light enough …….very inconsiderate of trains not to have windscreen wipers on all their windows……🙄😂

Oooooo me thinks I’ve got side tracked as reading back, no mention of what or where I’m going yet…..🙄 Head flitting about all over the place this morning….

I was trundling off to Bradford University for my last visit of the year as I’m on the Steering group of one of Sheffield’s research projects….’Journeying through dementia’. It was originally due to be at Sheffield but was changed to Bradford as Prof Gail Mountain is based at both……….

“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.”

The research is taking place in many Trusts across the country, my own being one of them. However, because I’m on the steering group I didn’t qualify. But that’s fine as I’m sure I’ve got enough to occupy me……..🤔

When I got to the uni – or I should say, once I’d been blown up the hill…….I went to pass the time away in the café area only to find it was graduation day for many. Lots of proud relatives and friends accompanied gown decked graduates – a lovely sight  AND their Christmas tree looked lovely….

I went upstairs to the offices and soon people joined me. Gail then came in with mince pies and a card and pressy for me which was so kind😊

Two of the group dialled in and we were ready to start….Catherine Hewitt from University of York was the chair, Prof Gail, Cindy, Ellen, Jessica and Zoe were the rest of the team…Catherine Jena nd me were there to hear an update from the research team and for them to answer any of our concerns or questions….

It is always so fascinating to hear the trials and tribulations that go on in the background of a research project – the bits you don’t usually hear about……the swans we see serenely floating along are paddling like the clappers out of sight…..

More can be found on their web site:

https://www.sheffield.ac.uk/scharr/sections/dts/ctru/journeyingthroughdementia

Last induction for Humber NHS staff for 2017….

Monday was a double whammy day……..speaking to new Humber NHS staff at their Induction in the morning and then West Yorkshire Playhouse in the afternoon. Yesterday I talked about the afternoon so today is the morning….

Cathryn Hart, Assistant Director Research & Development at Humber NHS Trust, picked me up from home at the agreed time and we drove through the sunshine to the Trust Headquarters.

Every month me and Cathryn speak to new staff on their first day, no matter what their job, on the importance of talking about research in the NHS.

Alison – administrator extraordinaire – suitably earned her brownie point by automatically going to make me a cuppa when we arrived….😍

We had a little wait as the Chief Exec is before us but it was soon time to amble down to the room.

They were a small but perfectly formed group as I imagine December is a quiet month for new intakes but still there must have been about 20+ so still a nice group to talk to.

I asked a smiley face on the front row to take a piccie of me and Cathryn – I never like to take one of the group, after all, it is only their first day and I don’t want to frighten them off!

Cathryn did all the formal Trust messages including how easy it is for any staff to promote research but also highlighting that they could talk about it to family and friends and also the many research projects going on in the Trust. She then gave them the opportunity to take part in research themselves by handing out the Yorkshire Health Survey for them all to complete should they wish
My bit was more my reasons for taking part in research and the role they all could play.

I end by saying:

“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.”

Another new intake who will hopefully take the importance of promoting research into their department…….

Cathryn drove me home and then surprised me with a lovely Christmassy planter……

 

Trundling to York for an unusual meeting…..

Yesterday, after all the excitement of London on Wednesday, it was back to normal and I found myself trundling off to York. The main aim was to finally manage to get my hair cut but also to meet Makoto Okada, who is a researcher for the Japanese Ministry of Health. Philly Hare from Innovations in Dementia had asked if I was free yesterday to meet with Makota and since I was in York anyway we decided to meet in the town library and hopefully find a quiet cornet for a chat and a cuppa.

It was another freezing cold day and was snowing as I stood at the village bus stop waiting for the first bus of the day. It was late of course, but it was no panic as I had an hours wait in Beverley for the bus to York. So time for a cuppa so I could warm up!

When I got to York it was fine and sunny but while I was in having my hair cut there was a snow storm😳 which caused much excitement, as it always does😂 However, once I stepped outside it was sunny again and we now had slushy slippy pavements but I got a piccie of a little bit of snow in the Museum Gardens

So I met Philly, Makoto and interpreter Mayumi in the library. They’d met some from Minds & Voices earlier so were energised and had lots of fun. He had received research funding from the Dept of Health in Japan to look at best practice. Philly received the brownie point today by getting me a pot of tea and Makoto also like Yorkshire Tea so an immediate affinity……………

We spoke through Mayumi, who was the interpreter with Philly helping me out at various stages. They asked me lots of questions about anything and everything including the importance of Peer support, experience at work, being diagnosed and my research involvement. Japan hasn’t got to the stage of co researching with people with dementia so Makoto was keen to learn more about that.

They asked at one point did I choose not to have benefit……..so I let Philly explain about the PIP process🙄

At one point we had a little rest to gain breathe and it turned out that me and Mayumi had one great thing in common – our love of cats. She is actually based in Scotland and has a Cat Therapy charity called Cat and Chat and takes cats into Care Homes for the residents to get to know – wonderful idea😻

Unfortunately I’d only typed random words so don’t have any more detail but it was sooooo nice to meet them and of course I had to take a photo

I trundled off to the bus stop to find chaos as someone had sadly been knocked over in a street where all the buses go. The police were keeping them all snug though and the ambulance arrived within minutes but it meant the road had to be closed while the police did their bit. As I waited by the bus stop I was trying to find a plan B when there was lots of flashing of lights and horns tooting from further down…….our bus had come a different way round but had to park a few hundred yards away and was trying to attract our attention……..we were just glad to see him!

On then journey home the snow became heavier and heavier and the tail backs longer and slower🙄. I missed the last bus back to the village but there was no sign of snow once we approached Beverley thank goodness…….but also no sign of a taxi in the market square……so I walked to Sarahs and luckily she was home and able to give me a lift🤩

Got home very tired but very snug……

Tea and Talk in Durham…..

Before I start, I wrote yesterday about my lamppost not working and being able to report it to the council by email as opposed to phone…….well I came home yesterday to find it had been fixed. So big shout out to East Riding council for fixing it 2 days after reporting🏅

Anyway, back to yesterday…….I’m part of an advisory group looking at improving services in the Durham area. The project itself is called ‘Co-Designing Dementia Care’and the researchers have been working with local service providers to see what is needed in the area or whether current services could be improved.

The researchers have already interviewed just over 20 people living with dementia and family members about their experience of services and today they’re planning to feedback the key themes that came out of the discussion and ask a group of people with dementia and supporters what they think.
However, the word ‘research’ puts so many people off, often due to a misunderstanding about the word, so they decided to call today:  ‘Tea and Talk’.

The taxi was early and I walked out of my house with gloves on and hood up only to find it really mild🙄 so ‘overdressed’ was a bit of an understatement!

After a bit of a hiccough (that word never looks right🧐, should be hiccup…) as the train going direct to Doncaster suddenly announced it was terminating at Hull🙈 but I was happy to see a replacement train sat waiting for us so no delays or panic from Hull at least…..

However……..when we got to Doncaster there was a lot of ‘Delayed’ and ‘Cancelled’ on the boards😳……..I knew I was early anyway for mine, so first things first, I got a cuppa….large one…….then I went to find a smiley face for help. They’re usually very helpful here and it didn’t take me long to find a queue of concerned people with a smiley man answering queries. Seems like there were many issues. I heard him say that trains to Hull were cancelled but hopefully they’ll have sorted that by the time I go back home🙄, but also the ‘track was undergoing a safety inspection’🤔 which was why mine was delayed……

But it did arrive eventually and only 20 minutes late…..

I arrived to find Jan waiting for me at the station and we walked to the theatre venue. Some people had arrived early, which was nice and we sat having a cuppa before lunch arrived!

I met another lovely man who had recently been diagnosed with Young Onset, which is always sooo nice. We sat and chatted about what we do, what we did and passed each other tips. Wonderful.


Great animation on one of the papers….

The rest were carers . I spoke for a few minutes about why I’m involved in this project. Mainly because of the title Tea and talk ….I said:

“there only has to be the mention of a cuppa tea and I’m there…….”

We then went through the themes and commented:

The first was around falls and gait.

Next was shopping, banking, remaining independent etc.

The third one was Care coming to the house.

And the final one, Access to information….

There was a real variety of views, which was good. Some people were caring for people in the later stages and it was good to hear their views. It was interesting to hear what was already in place in the area, good and not so good. Couldn’t resist a piccie of the 5 of us before we started:

We finished off with scones arriving for a final nibble before people left. The 5 of us had a discussion afterwards about how it had gone and then they all walked me to the station where the first sign I saw was…….

DELAYED…………..here we go again……..🙈……..

Yet another interesting day travelling…..read to the end!

Several weeks ago thieves stole all the lead off Beverley station roof – it then rained and the consequence of that was all the machinery was waterlogged. The information boards that I check each time, the ticket machine where I pick up all my tickets, the ticket office that is always so kind and helps me……were all closed, broken and silent …….So I and no one else knew what train was coming, whether it was delayed, whether it was cancelled. I had to go into Hull to collect any tickets ordered for me.
Total confusion and the information boards remained still and silent………

I’d been told it might be months before everything was working again. However, this cold frosty morning, I had a lovely surprise as everything had come to life again! They had pulled out all the stops and now everything was shining brightly and boards told me where and when trains were going – perfect – happy unconfused bunny again and thank you to the stars who fixed it all.🎖🎖🎖

Anyway, after that bright, if dark start to the day, my train and connecting train were even on time and this one was waiting for me in Hull….


It’s never dull in Hull…..😊 certainly isn’t during the City of Culture year!

 

The sun was slowly rising as we trundled through the countryside.

So yesterday I was on my way to London. I was going to Crutched Friars as part of the Alzheimers Society Research Network Communications group. I hadn’t realised I was part of this group until the invitation came 🙄
But I was going to see lots of my friends so I was happy to be trundling down. The aim was to talk about how we, as network volunteers, can answer best the questions we’re often asked and how we can help in disseminating good research.

Everything was going fine until I got to the tube station….’No Tubes to Tower Hill, alight at Aldgate’🙈 Here we go again me thought…….a nice man told me which way to walk outside the station and I then took a while to set my app to talk me to Tower Hill…….very pleased with myself when I finally arrived at Crutched Friars

I arrived to find Barbara, Sandra and Matt already chatting as we had a meeting with Matt before the main event to discuss a very exciting event the 3 of us are organising in York on the 14TH MARCH!! More to come soon.

We then went into the main meeting and Anna opened the session clarifying the aims.

Aoife Kiely- (I had to keep asking how to say her name as I kept calling her Iffy (😳) but it’s actually Eefa😇 ) – joined our table as it was her very first day as communications officer! She was a former scientists at UCL!!


A nice new playmate…

I mentioned how we need to be less formal and make it fun – sow seeds of the interesting stuff we do and ‘taster sessions’ to give people an insight into all that’s available to get involved in…
I thought it would be good to encourage couples to become involved in the research network as then they can support one another – a supporter and partner with dementia working together in the network and also able to work separately with support if they want to.

We thought of loads of ideas!

I also suggested they need a Twitter account as what better way to get all the wonderful things we do out to more people.

Lunch time arrived and there was no tuna on the plates brought in and I would have been fine with just a cuppa or 3 but Tim earned a bucketful of brownie points by actually going out and getting me a tuna sandwich, having read my blog about eating. That was the kindest thing to do…..🎖

After lunch we started with discussing the Key message – the what and why.

People rarely take in much when being spoken to so it’s important to – Tell people what you’re going to say – Tell them – And Remind them at the end

Dissemination  is key to the relevance and real value of any research. If it’s not implemented the public will see little point in the process.

Brain started to switch off around 2.30 as we headed for a reflection of the day but words appear to be lacking on my ipad at this point apart from making it clearer how flexible the role can be to encourage others who may be a tad daunted by the network to become involved and volunteer……

Final photo had to be the 3 amigos from Yorkshire…….

However….that’s not the end of the story, as I’m typing this on a very strange and unfamiliar train going anywhere but my usual route…….🙄…….you may have heard of all my nightmare train journeys…..I got a txt from my daughter asking if I was ok as there was problem at Kings Cross😳. At this point I’m on the tube and quite hunky dory……I arrive at Kings Cross to find total chaos and all the boards saying ‘Delayed’ ‘Find alternative route’😱🙈😳🙈🙈

Luckily Gemma had already done this for me and txt me to go to St Pancras and get a train to Sheffield and then get a train home😴. I then proceeded to St Pancras to find a mountain of people all waiting for the same train. It would mean my journey would be 2 hours longer🤐 but at least I had a Gemma to give me instructions as many were just wandering about totally confused……🙄 and I would have been one of them if it hadn’t have been for Gemma. The stories were of a sad death on the track or major security alert – I was almost hoping for the latter…

Very tired as I passed through Leicester…..not a usual city I see on my travels……good job Tim bought me that tuna sandwich as it might be the only thing I have today as it’ll be too late to eat when I get home…..

Hull Recovery College Experience……

Friday I was with Cathryn Hart, Assistant Director Research & Development at Humber NHS Foundation Trust.
Me and Cathryn do many double acts together and Friday was one such case as we were running a 2 hour session for Humber Recovery college


Fabulous graphics in their course booklet😊

It was the first time they’d put on a Dementia session so no one knew what to expect. Me and Cathryn had thought it would be supporters or people with dementia attending so we’d written some notes around that assumption.

We hadn’t realised that we’d been suppose to promote the session to attract attendees so knew no one might turn up………

Anyway, Cathryn picked me up early as planned as neither of us had been to the venue before .

I spotted it as we were driving around. Once we’d got inside we immediately found the kettle…..🙄

We were surprised when 3 healthcare professionals walked in – nice surprise obviously, but not what we’d planned for. However, we were quite upfront with them and told them we were winging it a tad.🤣 Obviously tea and coffee was the first on the agenda – I forgave the coffee people as it does mean more tea for me😊

Two nurses were from the Learning Disabilities team and one from Mencap. We were also joined by Acho from the Recovery College since they’d not a session like this before.

They all dealt with people with dementia so I went through all my challenges and simple solutions. They, like many professionals weren’t aware of dementia affecting so many of our other senses so I filled them in on that as well. I sent them the link to the Sensory booklet by Agnes and Donna Houston as well

We spoke of all the research that went on in the area and the Hope this can give to people. Cathryn filled them in on the work by the research team

They were very animated and chipped in lots of time asking anything and everything, which was so nice to see. Even though there was only 3 of them I could tell by their faces that lots of seeds were sown and mindsets changed. Acho also learnt a lot about dementia just by being there.

All sessions are free and they run the most diverse range – amazingly diverse really. You can find more on the Humber NHS web site

http://www.humber.nhs.uk/about-our-trust/recovery-college.htm

However, maybe the publicity needs a revisit as I’ve spoken to many people who havn’t heard of it, which is sad as it’s a good selection of courses that NHS Humber Trust offer. ‘Recovery’ College may not be the first place people with dementia may look for help as we all know we’re not going to ‘recover’. However, it could be advertised as ‘Recovering from a diagnosis and learning that it’s not the end’……

I meant to take a photo of all of us but I thought of it at the beginning and didn’t want to frighten them off and then promptly forgot at the end🤐 But I managed to get a photo of me, Cathryn and Acho.

It’s happening all over again at the end of next March so hopefully we’ll get more people next time.