All posts by wendy7713

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

Nominated for an award……

Never quite sure what I think of awards. I always feel a tad embarrassed to see my name on a list with wonderful people where in the end only one person will be acknowledged over others……🤔

Everyone is special.

That’s the negative…..the positive is that someone has taken the trouble to nominate you and that it brings to the forefront the work you’re trying to achieve….

Anyway some of you may have already seen this but for those that havn’t……

Winning is irrelevant as it’s the the message it gets out and the awareness it raises that is the selling point for me.

So it’s with a confused heart that I see someone has nominated me for the Yorkshire Choice Awards under the category Inspirational Individual……
It’s an awards that celebrate all things Yorkshire……I don’t see Yorkshire Tea on the list anywhere……..but then I suppose their award is me advertising it so much…..

anyway …..if you have a minute to spare and fancy voting for me, here’s the link…..

https://www.yorkshirechoiceawards.co.uk/votehere

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……😳

My last trundle of the year to London……

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

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

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

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

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

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

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

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

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


A lovely smiley piccie by George before we all started.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Our Services in Crisis………My rambling thoughts….

A long blog ….sorry…..

A variety of circumstances has recently found me trying to work out what has gone wrong with our wonderful NHS and services in general…..I was at a meeting recently where they spoke about 2040, that being the year they predict the NHS will implode on itself, such is the state of our wonderful service. That will be the year that those born in the new year will be 21 years of age. Well, looking at the current crisis I wonder if the NHS has that long to go before crumbling under underfunding?

It’s often the case that it’s not until you need a service that you realise the crisis exists. Some people are so grateful to finally receive support that the length of time taken for it to materialise blurs into the background. Another postcode lottery in existence as some areas struggle to recruit staff.

Reality TV programs are often criticised but I love them. They’re exactly the sort of program I can now watch as I don’t have to follow plots, remember characters or names etc. So the recent flood of Ambulance, Police and the wonderful 24 hours in A&E have allowed me to continue to watch the TV. But they’ve also opened up the world of these crumbling services from the other side of the fence – from the side of those who work in them. I hadn’t realised until watching that ambulance workers are twice as likely to have mental health issues.

Reality programmes shows services from the other side of the crisis. The call handlers, often young people, are exposed to traumatic calls and the abuse they are exposed to by the frustrated public is unacceptable, yet happens on a daily basis. As human beings we react to a situation by taking it out on the first person we speak to – it’s not the call handlers fault, when you ring 999 that an ambulance isn’t immediately available, yet many instinctively react as though it is.

On these programs you often see the inappropriate use of 999 service which takes precious resources away from those most in need. Those who have had too much to drink on a night out and fallen over or can’t stand up whose friends then ring 999……just one example.

The Ambulance crews and Police often say that when Social Care closes at night, or when Social Care fails in their duty to help, 999 is the only service that will guarantee to help, no matter how long it takes…..

In a previous life I worked in the call centre for NHS Direct as a non clinical supervisor. We too had ‘frequent callers’. Just as I still hear on these programs. The lonely, who often havn’t seen anyone in days, call 999 simply through the need to have someone care for them. Is this a Service issue or should Society take more responsibility?

We didn’t use to have all these services. Was this because there was no need, I doubt it. So what’s changed? Has society created the issue or has the existence of the NHS given us unrealistic expectations? Have we created an expectation that help will be instantly available?
Obviously it’s a combination of many circumstances.

What is clear, is that those in real need of help, are often denied it.

Accident and Emergency – another service that no longer has ‘Winter Pressures’, but ‘All Year Round’ pressures. Once again, you see so many people inappropriately using this service. Has it become too accessible being another service that never closes? Is it the easy/only option for many? Instead of looking to the pharmacist, looking to Minor Injuries Units, GPs, and asking themselves ‘what might be another, better option’?
It’s difficult when you’re in that position, maybe panicking, maybe not knowing what else is in your area, so maybe we’re not educating people in the right use of services?

As for mental health services….well to say its broken already is an understatement. With all the publicity recently on being open about mental health issues, you would think the service was getting better…….but…….

Since when was it acceptable to assess someone urgently referred by their Gp by phone? They have no personal connection, no rapport. no sight of the distressed face, the broken person. But it allows them to have that detachment,  no personal connection and enables them to say they don’t need help,  what sort of service and help is that? How does that help the person? In fact it makes them feel worse. But because it’s so underfunded, this wall of impersonal support allows them to close the door on those in need. I also don’t condone the lack of empathy, compassion and understanding that this method allows some staff to use on the faceless phone either.

On one of the Ambulance programs that focussed on Mental Health, a crew were sent to a man so desperate for help he’d climbed onto the roof of a hospital, threatening to jump. He’d consistently asked for help from the mental health team. Even I, as a lay person could see his desperation. What saddened me most was the last time he had actually seen someone from the mental health service face to face and in desperate need of help, they’d handed him a piece of paper, and on that piece of paper was the number for the Samaritans………the crew persuaded him to climb down with the promise of help.
He was grateful, but of course, we then see that all crisis beds are full, so he was taken to A&E where the circle of crisis would start all over again.

Mental Health and Social Care and the services most in need and the two which have already crumbled.

Of all the services I’ve mentioned, it’s the system, not the staff at fault. A small percentage of staff have allowed frustrations to overflow into their relationship with patients and no longer know how to treat and talk to patients at a time when they need empathy and understanding.

Having worked in the NHS for 20 years, I’ve seen the crisis build. Underfunding by the government, inappropriate use of services. We take it for granted that this wonderful institution will always be there. But will it? If we continue to bombard this wonderful Institution, the Institution that is envy the world over, if we continue to underfund and use incorrectly, it will undoubtedly collapse. Surely we need compromise, we need education, rules on use, and yes, we need the government to provide more funding. It needs urgent resuscitation…

The world is changing, the world is ageing, so we need to think differently about the services needed. I remember this discussion taking place many, many years ago…..why does change take so long? In my opinion new governments come and go and restart, replan, revisit. The proverbial 2 steps forward 10 steps back. Isn’t it time those in the know tell the government what is needed and the government, elected by the people, are told what is needed, no matter what their political persuasion?

As for Dementia Services and Social Care…..well, that’s even more depressing and at some point may well have a blog all to itself…..

Just my thoughts….. my ramblings …..

A village bus ramble, email from a Doctor and a Short Interview……..

I was on my lovely village bus on Friday trundling home when a conversation started about the time it took to be accepted as a villager…..it went like this……

”well I was told  I’m now a villager because ny husband is now buried in the churchyard”

How long have you lived here?”

”only 51 years…..I wasn’t a villager at 50 years but I am now” she said proudly and then went onto say……..

”My husband used to love a tot of whiskey every night, so now I go up to the churchyard every night to make sure he still gets his tot of whiskey…”

Priceless…….😍

Yesterday I received a wonderful email from a Doctor in Scotland. The subject title was:

“You’ve opened up a doctor’s eyes“

She said such kind things about my book but the most important were:

”But more importantly, there were many moments in your book which made me reflect on my own practice as a doctor, as well as the behaviour of my colleagues in the medical profession. You made me think about things in different ways, and realise how much of what we do in hospital must be completely disorientating and upsetting for some of our dementia patients, even though it is something we are aware of and claim to be trying to help. It became clear to me from some of your descriptions and stories that we can definitely do better for our patients, just by having a better understanding of the experience of the disease from THEIR perspective, rather than what we understand (medically) of it.”

It felt like a High Five moment…..🙌

Finally, a while ago I was invited to the annual BRACE Conference in Bristol. I was interviewed by  Sir Martyn Lewis, who used to be a newsreader for BBC television.

Well, now they’ve put a short cut down version of the interview on their web site. So if you’re interested, you can watch it here.😊

https://www.alzheimers-brace.org/living-with-dementia

A Simple Christmas cartoon from Billy……

Hello Billy fans…….yes, Wendy has probably never told you that I have more just as many followers as she does…….

some of you may have already seen this cartoon by some of my friends but thought it worth putting them in the limelight as Christmas is very stressful for us cats too…….but in ways that may not have occurred to you……

Happy weekend every one from Billy….oooo and Wendy as well😻🎄

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……….