Category Archives: Education

A Trundle to Bradford……

Yesterday I trundled to my favourite university, Bradford. They have a wonderful set of lecturers and students along with a great culture of inclusivity.

Clare Mason had emailed me asking if I would be prepared to make a short video, along with others from their group of experts living with dementia and supporters.

They have been doing some work for Health Education England and want to create a set of videos to be embedded in their online training sessions. This would help make the training real with the lived experienced included and have a greater impact.

I’ve often said that academic ‘Experts’ in their field understand the theory and the science behind dementia but lack the reality knowledge. This in turn, when delivering training, misses out the vital component of lived experience. So Bradford aim to fill that gap, giving their online students a more rounded education.👍
My part in this was to provide my thoughts around working, paying mortgages/bills, and experience of starting aricept and managing medication.

The morning started off very misty murky but at least the trains were on time, which is a bonus lately. Autumn is clearly upon us….

Anyway, I got to Bradford and ambled up the hill to the Uni passing by the square which had been decorated. All the trees had poppies hanging amongst their branches….❤️

Claire met me outside as there was a picket line in full force with drums and music screaming out…….it didn’t bode well for recording….we went and said hello to the team in the dementia studies office and Georgia made me a cuppa tea before we headed off for the recording. Others had done the same the day before and that morning but the noise was affecting the recordings. But we were keen to give it a go and just see what happened…..

Clare asked me questions about employment and the impact a diagnosis had on me and my girls.. I certainly didn’t want to retire straight away as I wasn’t ready. I still had a lot to give. But eventually I had to. I was trapped in a catch 22 situation. I had a mortgage so couldn’t afford to reduce my hours or take a less stressful job as I wouldn’t have been able to afford my mortgage. Instead I had to retire in the end and use my pension to pay off my mortgage and move to a cheaper area so I could afford to buy a house……..I realise I was very lucky to be able to do this. Others might not be as fortunate☹️

I’m also lucky – being a glass half full person – as I could have wallowed in having to leave my forever home in York, but instead, saw moving to my village as a new adventure.

Personality plays a huge part in dealing with a diagnosis.

Loads of other questions were asked, including medication issues for the pharmacy module. However the recording didn’t go to plan and took a lot longer, due to various ‘noises’……..

The pickets blew whistles, banged drums and played music, which we could hear in our room in the distance. Then a digger decided to make regular visits to the flower beds outside 😳. To top it all people kept passing by the usually quiet area on their phones and chatting loudly.
The funniest had to be someone bursting into song somewhere……..🙈

Hey ho…….it was very good and the videos, once sorted, will enhance the learning perfectly.

We’re all individuals with individual personalities so healthcare professionals need to take the time to get to know each person and treat us appropriately, be it with positivity, empathy or direction………

I was due to arrive home in daylight but, once again, the trains let me down. I have to catch 3 trains and the one from Leeds decided to run late, meaning that I missed my connection in Hull🤦‍♀️…….

But at least the Humber looked wonderful in the sunlight….

If I’d have waited for the next train I would have missed the last village bus, so instead, decided to go the scenic route on the bus which, even though it takes forever, drops me off at the end of my road……..so at least I got back to familiar territory in the dark…….🙄

FREE Course on Living with Dementia……

Last year me and Cathryn Hart from Humber Foundation Trust ran 2 FREE workshops in Hull for anyone to attend on Living with Dementia as part of the Humber Recovery College season of courses.

Well, this year they’ve asked us to run them again. This year we decided to change the wording and have called the course:

Living with Dementia (and things you can do to help)

We’re hoping to attract a mixed audience. Anyone can attend and you don’t necessarily have to live in the area. I’d love healthcare professionals, people affected by dementia in any way or just those curious to learn more, to sign up.

The FREE workshop lasts 2 hours and is very informal. You can ask questions, join in with your own view or just sit and listen😊

We’re running 2 workshops. The first is on:

Thursday 15th November 10am – 12pm at Beverley Library in the Education Room – Page 25

And the second is:

Thursday 17th January 10am – 12pm at Hull Central Library on Meeting Room 1.Page 33

As their prospectus says, they work to the three central Principles of Recovery…
Hope, Opportunity and Control…….perfect!

A link to the prospectus and more details can be found here:

http://www.humberrecoverycollege.nhs.uk/

or email

hnf-tr.recoverycollege@nhs.net

 

A Day Away from the Four Walls……

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

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

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

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

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

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

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

A Trials unit has been established at the Uni.

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

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

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

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

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

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

All because of taking part in research………

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

Part of what I said was….

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

My morning with 200 wonderful children……

So following on from yesterday blog……after spending the afternoon with the nurses at Whipps Cross Hospital, I made my way down to Tunbridge Wells.

I’d forgotten how the train journey down from London was a commuter train. I saw it had 8 carriages and thought, no problem, lots of seats🙄 but after the second stop at London Bridge it turned into a sardine can…🙈 Very different passengers from those I’m used to – an interesting journey where no one talked😶

I was met at the station by the lovely Dr Amanda Turner, who along with her equally lovely hubby, drove me to the hotel and made sure everything was in order.

I chatted to the hotel receptionist for ages as she was doing a Master in the psychology of crime with those of who have a mental illness or dementia – fascinating. I wish I’d recorded our chat.

I was shattered after the long day so hibernated for the evening.

The evening event the following day is with my lovely partner in writing, Anna Wharton lives and we’d been asked to speak at an evening event about how we wrote my book. We’d been invited by Dr Amanda Turner of the Tunbridge Wells Women’s Equality Party some time back.

It was a shame the local paper wouldn’t advertise the event. Apparently because I wasn’t local and it was about dementia….mmmmm……well Anna is local and dementia is everywhere so maybe that should have been a consideration……hey ho, not a lot we could do.

While I was down there, and since the event was in the evening, it seemed a shame not to make the most of the time. Anna has an adorable 6 year old daughter called Gracie and we agreed that we’d see if the school would agree to me doing do a Dementia Friends session for her year. So I find myself with 200 children…….😳 My little village school has 200 children in total. Gracies school has 200 children in Year 5 and 6😳…….came as a bit of a surprise……

Anyway, I awoke to a very misty atmospheric Tunbridge Wells but the sun soon started to make an appearance and it turned out to be crazily warm…..

Anna duly came to collect me at 9am and the wonderfully exciting day began with making 200 children Dementia Friends at Gracies school.

All I needed was wool, to make into the brain with the help of some volunteers, scissors to use to snip the wool to show when my brain can no longer do something and fairy lights to show how some days I can do things and the next day I can’t

On the journey, Anna mentioned the age of the children as 10 and 11 years old with Gracie being allowed out of her class to help😳……..I’d thought year 5 and year 6 meant age 5 and 6 so had printed my talk for littlies……..so we hastily got the school secretary to print the older childrens talk.🤦‍♀️😶🙄

We walked into the hall to find 100 pair of eyes watching us. Gracie joined us as chief helper. I always ask how many have heard the word and know what dementia means and from the first group about half raised their hand and gave some very good explanations of the meaning. Once I’d finished they all trooped back to their classroom to complete their Action card in order to receive their Dementia Friends sticker……

We then had a short break before the older children arrived and had a cuppa tea and selfie in the staff room……

Back in the main hall another 100 older children waited quietly for the next session. When asked the same question, I’m sure nearly 100% raised their hands and knew what dementia meant. Many raised their hands at having someone in their family with dementia. But equally all of them raised their hands to say they learnt something new.

They stayed on the hall with their teachers after we left and had a reflection session on what they’d heard and learnt.

What a wonderful start to the day. I’m sure I said to Anna how I hadn’t thought it had gone as well as at the village school due to it being so early in the morning and my brain not feeling quite engaged but she said it went fine…….and the ‘actions’ the children wrote were just simply, amazing to read….❤️

The highlight for me was meeting Gracie as we’d only met by letter before…..adorable……

Tomorrow will be about the rest of the day, including meeting Derek and Clive and the evening event……..

Training Hospital Nurses…….

So yesterday saw the start of the last mad week before a period of normality. It began in London at Whipps Cross Hospital. Buz Loveday, a trainer in dementia, often invites me to be part of her 4 day course for hospital staff and yesterday was one such case. I speak the afternoon of the first day, so hopefully setting the scene and raising questions from the start.

However the day didn’t start off well….

But my lovely pals on Twitter came to the rescue ❤️. I was overwhelmed by the tweets and personal messages offering help. I found a trio of ‘Hull Trains’ staff helping people, 2 men, one woman, but only the woman had a smiley friendly face. No need to say which one I approached. She helped me with the plan B and said she’s look after me and make sure I got on and got a seat on both trains as they were also travelling on the same trains.

Going the extra mile can take the stress out of someone’s day and a smile costs nothing – no money, no knowledge but goes a long way to helping me feel calm.

Anyway, true to her word, the first train went smoothly and then we got to Doncaster where they had their own chaos. Several more trains had been cancelled including another London train, meaning there would be 3 lots of train passengers trying to get on our one🤯😳😱.

But again, true to her word, she told one of the unsmiley males to carry my suitcase and made sure I was one of the lucky ones to get a seat……..😍

Lots of unhappy passengers but it wasn’t the fault of the staff but they were getting lots of hassle. If the men had followed the womans example and smiled, they would have done a lot better.

Anyway got to London and then had to get a cab to Whipps Cross Hospital. I hadn’t realised it was so far out, but an hour later and with a chatty cabbie, we got there.

Buz had sent me some photos of where I was looking and I found the cuppa tea place with no problem……I could probably sniff out a cuppa tea if I needed to😂

I sat and watched the world go by, with a cuppa, until Buz arrived and took me over to the training room. The hospital cancelled the training a month or so ago due to poor staffing, but today I was met by 9 smiley faces. They were Ward Managers, Sisters and Physios


They wanted loads of photos at the end so they took no persuading at allot have this one taken for me😊

I spoke about absolutely everything and more for 90 minutes from, senses to language, adapting to the hospital environment. One thing I said was:

So often clinicians see the condition and not the person and an even worrying trend is for specialists to see their specific speciality and ignore the dementia……. So you can see how important it is to see the whole person and not just having tunnel vision and focusing on one particular condition.”

We had 30 minutes for questions afterwards and I remember they gave me scenarios and asked what I would do. The only one I remember is when relatives insist that dementia mustn’t be mentioned to the patient. They’re in denial and don’t want it talked about.

I said how that must be one of the most difficult situations to find themselves in and how the patient has to come first. It brought on much discussion but luckily they were all in agreement about how their patient has to come first and deal with the situations as and when they happen.

In no time at all it was time to get my taxi back as I was heading to Tunbridge Wells for a couple of days – more of that in following blogs.

Another wonderful day and interesting to see what they weren’t aware of and hope they learnt much. I noticed lots of note taking, so hopefully it was worth the trip………


Me and the lovely Buz😊

Dementia and Cancer….

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

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

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

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

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

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

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

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

The aims of the project were detailed nicely in a slide

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

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

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

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

Year 1 is a setting the scene year

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

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

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

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

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

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

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

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

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

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

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

 

A Day at St Gemmas Hospice Leeds…..

Yesterday I’d been invited to speak at St Gemma’s Hospice in Leeds as part of a Community of Practice Event along with Clare Mason and Professor Murna Downs from Bradford University.

By pure coincidence I lived near the hospice for a year when I lived in Street Lane in Leeds. I actually remember going there for some reason but can’t remember why…….

Anyway, a cold morning awaited me and I headed out for the taxi with no coat, only to go in reverse and put my winter coat on before heading off to the station in the taxi……🙄 It was a beautiful morning trundling past the Humber…

Clare met the taxi outside the Hospice and paid the fare for me and then I was shown in and a cuppa tea was waiting for me. Murna and Lyndsey also arrived and had a huggle

The writing above the door of the room was wonderful to see…..

Improving Patient Care Through Knowledge”

Bradford Uni have worked in collaboration with St Gemma’s  hospice funded by Health Education Yorks & Humber……the staff were those who had attended the Train the Trainer course from 11 Hospices. But due to circumstances 7 were represented today….

The Hospice staff are naturally caring but it’s the added issue of dementia that causes issues. For example, a visitor with dementia simply forgetting the person has cancer, especially if that person is a partner……but so much else obviously
Jane from St Gemmas did the housekeeping bit before we all went round and introduced ourselves.

Murna gave the initial talk around the NHS Pathway for dementia and here specifically for dying well with dementia but also living as well as you can with advanced dementia. We need all staff to have access to the knowledge to put into practice the key learning outcomes…….

“We have to look at the Full Human Being with a medically complex condition……”

with many influences of background, age, biography etc and also with many involved – the person their family, care staff, Clinical experts and pastoral Carers……

Language – living with advanced dementia, end of life care, actively dying or terminal phase – what do we mean when we talk about this in the hospice setting.

“Are we involved in specialist care or simply humanistic care? “ asked Murna

We shouldn’t just invest in the ‘end of life’ care when death is imminent …….

I chipped in as there was lots of talk of living and dying well, because these are the words used on the NHS Pathway..

But I have a problem with this as ‘well’ for some people is very different for others. I prefer ‘as well as you can’. For some people, just getting out of bed one day is an achievement and needs to be celebrated. So the so called ‘person centred care’ isn’t ….because it can make those who struggle feel worse because their best is very different from another person. Dying well might not be achievable in all case but if the staff ‘do their best in the circumstances’ that is dying as well as is possible.

So now is was up to the hospices to feedback their learning from having delivered the course to their own staff…St Gemma’s  hospice was first and Gemma came up with how ALL staff benefit from training – the food staff, volunteers, Housekeeping and reception staff not just clinical staff.
Gemma spoke of the challenges, staffing issues and how to free staff etc but all attendees fed back positive comments.

Wheatfields Hospice went through their presentation and have all their staff going through the Foundation training before moving on to the more advanced which meant the groups were of mixed ability which made the groups so varied.

St Catherines Hospice in Scarborough. They started training 3 years ago and have trained 102 staff to date of all skills through the Foundation Course. Again the difficulty of getting staff to attend was highlighted.

St Leonards Hospice were up next and they both knew my daughter Sarah and worked with her when she was at York They spoke of needing to be more aware of staff circumstances as you might not know they are caring for someone with dementia or someone may have died in their family from dementia….
It’s important for those staff who believe they know too much to attend a Foundation course. It’s how you approach those staff and often it’s a case of stating that they need to attend to share their experience.

By having volunteers and non clinical staff on the same Foundation as Clinical staff shows the value placed on ALL staff. Hospices can’t exist without the working together of all teams.

Barnsley Hospice – Again the feedback was that it was nice to have all different skill groups to be together and mix together.

Harrogate Hospice was last but not least and also said how mixed staff groups worked very well. The expectation there is that everyone will attend, it’s not optional. The facilitator decide who attends what session so the mix is good

After lunch me, Clare, Murna and Lyndsey were taken on a tour of the Hospice and they asked me to comment on a room they were hoping to adapt. I gave a few ideas for change.
We headed out into the beautiful garden and couldn’t resist a piccie….

Once everyone was back in the room it was then my turn to speak. I covered as much as I could in the time allowed but the one thing that came out as most useful was when I said:

I wonder how many of you always sleep on the same side of the bed? Most people do. But when you’re in hospital, or you’re moved into a Care Home or Hospice people are often helped into bed at whichever side is convenient for the nurse – imagine how confusing that can be for someone with dementia. Or think when dressing people which arm they normally put in first when putting on a shirt or coat?”

There were many flashing lightbulbs moments and some lovely comments and observations made after I’d finished. It was almost time for me to go but we snook in time for a group photo

 

During the discussion before I left on the End of Life Module Terminal Agitation was raised. Me and Clare were saying how at the End of Life it’s so important to see the person and not let the dementia prevent you from doing the best for that person.

Treating the symptoms the same as someone without dementia…”

said Gemma from St Gemmas.

Wonderful that there was no sight or sound of ‘suffering’ in either the talking or on slides……. All were willing to learn and understand more and couldn’t have been more receptive. They, as trainers, are all doing their bit to spread the word and could not have had better people to train them than those from Bradford Uni……..

A Trip Back to a Former Home Town……..

On Thursday I headed down to, what was my home for 30 years, Milton Keynes. I was staying there ahead of The Buckinghamshire Dementia Conference on Friday.

I’d been asked ages ago to speak at the event by Nicole Palmer, Alzheimers Society Services Manager – Buckinghamshire & Milton Keynes. Due to the venue being in Aylesbury, which is difficult for me to get to by train, Nicole had suggested I stay in Milton Keynes and then someone would drive me to the venue and back, due to me knowing Milton Keynes.

I had to go south to London before heading back north to Milton Keynes, but that’s much quicker and far better than navigating Birmingham New Street.

I arrived in glorious sunshine and my friend met me and took me to their house for a cuppa and catch up, on the way passing my old running route of Willen Lake…..

Julie and Terry are the very same friends I mention in my book and we were neighbours for years. Our children gre up together and in the book I quote a pressie I gave to Julie when I moved. It said:

“”I cannot sit and chat with you the way I’d like to do so brew yourself a cup of tea, I’ll think of you – you think of me”

So this time we were able to have a cuppa in person. They’ve visited me several times but I’ve never been able to reciprocate until now……..

Terry eventually took me back to the hotel to book in and that’s where things went very wrong…..the paperwork had the wrong date and said last month😳😱
😳 My brain closed its doors and I couldn’t think what to do and did have a mild melt down but luckily the hotel staff were amazing, phoned Nicole and sorted it, took me to my room and even upgraded me. Big thanks to Holiday Inn staff.

Anyway heart back to normal…..and cuppa tea or 3 sorted me out

The following day, Jan Kendall, Dementia Support Manager for the area, came to pick me up from the hotel and drove me the scenic way to Aylesbury. We were met by Nicole and lots of other people and a mug of tea was placed in front of me even though everyone else had a cup…..🤓

It was a lovely venue and was held in the council chamber – a very grand room🙄….

Many new playmates came early before the start of the crowd and we had a lovely chat on the vagaries of the media and how much is happening in their area. They were a lovely bunch of new playmates and once again, laughter won the day.

I was very taken by the 2 versions of the agenda – a normal copy and a simplified one – wonderful!

Michael Roarty was the facility for the day. He asked each group of attendees to raise their hands so we can see who was in the room which was a nice way to do it as there was well over 100 people.

The agenda for today was hearing Real Stories, an opportunity to give views on services in the area, ask questions and access information. All this is in aid of planning the shape of future services for Buckinghamshire.

We chatted amongst ourselves on the table to say what we wanted to get out of today. I was sat next to someone whose father had Parkinson’s and Lewis Bodies Dementia and had no support – very sad. I gave her web sites and groups to contact. After all, I’m always saying:

you don’t know what you don’t know”

It was my turn then to be the first speaker and my talk was “Adapting to Life with Dementia’

I talked about this that and everything for 30 minutes but included:

It’s not rocket science – positive language and behaviour is returned with a positive well being – negative language and behaviour results in a decline in well being, which will actually cost the NHS more as we make a trip to the Gp with depression………”

The room was wonderful in its applause and they made a video of it too for their web site.

It was then cuppa tea time and Jan, who had been nominated as ‘keep Wendy supplied with tea person’ brought me another mug.

And so the personal stories from local people continued before lunch. So nice to hear. One carer spoke her poem. She wrote it at 5.30 one morning asking for the return of the husband she knew and wanting guidance on how better to understand – it was wonderful.

It was then 4 people from Buckinghamshire, talking about living in Buckinghamshire – Carers and people living with dementia. The first one was a 23 year old who cares for her father. They showed a video of a film she made for Bucks Carers:
“He’s so young, but I’m so young too. It’s not fair. The situation has to change. “

Sue then spoke of the need for a single point of contact. Her husband has Frontal Temporal and she has 13 services connected to her husband, none of whom speak to one another.
Finally Stephen spoke of the need to always take someone with you to any meeting and the godsend of meeting people in the same situation.

Over lunch I sold all the books I took and met some wonderful people including Twitter friends. They had lots of interesting stalls around what’s on offer locally.
Kind people sorted my lunch out – tuna wrap😊 before we headed back in and listened to a wonderful Carers Choir. We were able to sing along as the words appeared on screen and they were modern up to date songs.

The afternoon was taken up by discussion groups on different questions. The tables were set up with a facilitator and then either supporters and health care professionals or People with dementia…..

We had to answer 4 questions – What has worked well, What hasn’t work well, What support was missing and What should a good service look like?

I was flagging and very tired and found it difficult to keep up and hear, but I did my best and contributed where I could, but stopped typing….

Once again, I had a fabulous day meeting lots of wonderful people. I was totally exhausted once Jan dropped me off at the hotel. But as I’m finishing this off, it dawned on me that

I’d rather die of exhaustion than dementia….”

Devon Care Home Teams Annual Conference….

Together Towards Tomorrow……

I’m  glad I ventured into this unfamiliar world, not only because I was talking to new people but also because I learnt so much. A very long blog but as you’ll see an awful lot of stuff you may be unfamiliar with…….

So my busy week continued on World Alzheimers Day on Friday with a conference I’d never attended before – a Care Home Conference. However, I don’t make things easy for myself and this one was at the other end of the country in Barnstaple Devon.

Anyway I’d made my way down from the Birmingham conference to Barnstaple via WALES, which I wasn’t expecting 😳…….but the fact that every other passenger was looking worried was a comfort and, once again, I had my lovely Twitter friends reassuring me it was due to work on the tracks.

I finally arrived many hours later to a dark very wet Barnstaple but Becky was there to drive to my next hotel for the night. Someone showed me to my room and I was met by a lovely surprise…..Becky had already reccied my room and left me a box of `Yorkshire tea, Devon scones and post it notes!! Not only that but she’d covered my black TV screen with a red pillow case…….thoughtful beyond belief…..😍

After breakfast the next morning, Becky arrived to pick me up along with Sharon, who was also a speaker, along with a huge teddy donated for the raffle – I didn’t dare buy a ticket in case I won him and had to get him home too!

I was up first and spoke for 45 minutes including this:

I wonder how many of you always sleep on the same side of the bed? Most people do. But when you’re in hospital, or you’re moved into a Care Home people are often helped into bed at whichever side is convenient for the nurse – imagine how confusing that can be for someone with dementia.”

They were so warm in their applause, appreciation and comments afterwards. One couple where the husband lives with dementia, said that through my talk she’d found ways to overcome the frustrations for her husband. We chatted for ages over a cuppa which was wonderful. Always nice to meet new playmates.

After me was Sexual Intimacy in Care Home by Dawne Garret from the Royal College of nursing.

Sex is a subject healthcare professionals in care home have problem discussing. Dawne said, older people are sometimes just waiting for you to ask – for example, the side effects of some medication might affect the ability to have sex but is so often not highlighted.

A sexual experience doesn’t have to mean the physical act. When older people were asked for their meaning of sex, the answers given by older people were ‘Being close, cuddling, kissing, music and dancing. The courtship of older people, often the most unchaperoned relationship you had with a potential partner would be around dancing, so for many people, music and dancing are something sexual.
This will disappear with the next generation as that wasn’t part of their life. So interesting and rarely highlighted.

She asked the audience to raise a hand if their residents were able to share a bed with their partners and I couldn’t see any raised hands……..Dawne said this was very common…….☹️

She gave a case study of 2 residents who had begun a sexual relationship and they both consented to this. But the male says the staff must under no circumstances tell his wife who visits him every week.

She asked what questions they should be asking……

They asked about mental capacity and both residents had mental capacity to consent
Someone asked if he was a persistent philanderer But they don’t have the right to impose own morals but they do have to recognise its affect on care
Sexual health regarding sexual transmitted diseases should be addressed as the increase in the over 60s has shot up.
Sexual health clinics are often tucked away in inaccessible places to older people. The language is often very different from that used by older people. Sooo interesting…….

Older people often think they have no risk because they can’t get pregnant so so they must have support and advice about sexual diseases.

The legislation around sex is very ambiguous as no judge wants to touch it. The guidance the RCN has written was written with the help of a barrister with an interest in Human Rights. “Best Interest’ doesn’t work for sex – you can’t make a judgement on anyone about sex or marriage.
Discussion with the team needs to happen. This threw up an awful lot of concerns .The first duty of care is the resident.
It showed how prepared staff need to be around this and highlighted the fact that the next generation will be quite demeaning and know their rights.

Staffs cultural moral views must be supported yet the prime driver is the residents RIGHTs……but the exploration of the intricacies and issues raised was wonderful.
When you also take in same sex marriages, LGBT community who worry about entering a care home, those with a history of sexual abuse, those having committed crimes of a sexual nature, you can see what a minefield it is.

She was wonderfully open and a fascinating talk. Fascinating controversial subject that I imagine is often swept under the carpet or ignored in many situations. It’s so important for owners and managers in care homes to give staff support and guidance on coping with these sensitive situations. The family’s also need to be supported.

Google RCN Care Home journey and the guidance is there.

During the break I sold all the books I had and could have sold many more. It was so sad not to have some for all people who wanted them but my suitcase was only so big and I did have to make room for clothes and Yorkshire tea bags!

Sharon from the Queens Nursing Institute was up after the break. `They’re based at the Royal College of Nursing. They set Standards’s for Education and Practice.
She spoke about the Queen’s Nurse Title. She told community nurses in the room to think about becoming the Queens Nurse. They can applying free for a leadership programme.

Sharon has been immersed in Care Home work for the last 18 months.

She found how care staff in care home are paid less than those who look after our rubbish…..says it all really how undervalued care home staff are.
She has written a publication for nurses on Transition to Care Home Nursing. It was the most difficult piece she’s had to write. Do they have the skills to be a nurse in a Care Home?

Nurses feel isolated in care homes and have to make high level decisions alone. There are few leaders and national role models in Care Home nursing and poor integration with the NHS. As with many organisations she found communication was a nightmare.

Sharon gave a lovely quote for me for care homes nurses :

Appreciate the Artistry of your craft”.

The Deputy Director of Nursing then spoke about recruitment and retention. The Nursing associate role is a new role and they’ve been looking at what the role should look like to fill certain gaps. She’d brought along a Health Care assistant who was undertaking this role. It opens up conversations about looking at skill mixes slightly differently and how this role might be used in the Care Home setting.
Helena, a trainee Nurse associate then spoke about being involved in the pilot. Helena is nearly at the end of her training and says she feels, “so proud” to have shown how her skills have shown what a valuable member of the nurse family associates could be.

It made me think whether these people, who may have become nurses before the degree course was born, yet weren’t academic, but are wonderfully caring. are now able to climb the ladder of their choice.🤔

3 more speakers before lunch

Firstly, Pathfinders is a multidisciplinary team who work at the front door and backdoor of the trust. At the front door they try to ensure those who don’t need to be admitted to hospital aren’t admitted and at back door work with the most complex patients around discharge.

Then Peter Clifford through North Devon Hospital Libraries filled everyone in on the resources available at the library and the changes that have taken place.

Finally it was Ruth Morgan who spoke to them about distance learning and learning from home and what’s available.

Over lunch many people came over to chat but one professional from the local Memory Clinic arrived and people told him to talk to me. He asked me:

‘Considering our time limitation on delivering diagnosis, what should I concentrate on?”

He expected me to talk about the detail so was surprised when I simply said,

The language you use”…….

I went onto to say something I said in my talk about the psychological effect of language should never be underestimated and how that, along with body language, should be used to deliver a diagnosis positively……

The lightbulbs shone bright and clear. I just hope he takes it into practice……

After lunch I think the previous days chaos was catching up on me and I was just staring and sometimes listening but not typing. But I enjoyed tha Heads and Tail game to wake everyone up after lunch.. Everyone put in £1 and stood up and put their hands on their heads or tail. Someone tossed a coin and those that lost sat down. It went on until the final 2 and whoever was left standing, won. What a great simple quick fun money raiser – must use this at all our events to raise funds!

Today I learnt so much that I hadn’t heard before. Obviously I won’t remember much at all if anything, but I loved sitting and listening to different yet invaluable stuff, listening to different healthcare professionals, from different environments ……

Sooooo worth all the chaos and traumas of getting there – loved it because of its difference……..

I’m not declining into an old woman……

Some of you may know that I’ve been acting as a consultant, advising the cast of theatre production of Still Alice.

I worked closely with Sharon Small who has taken on the challenging role of Alice and Eva Pope who plays ‘Herself’.

Sharon said to me recently how one piece of advice I gave her has stuck with her and helped her enormously. During the very first rehearsals at Leeds Playhouse earlier in the year, Sharon was struggling with the decline aspect so she started to use a walking stick. But I said it looked all wrong as she depicted an ageing person. She was becoming the hunched up old woman.

I said:

Im not becoming an old woman I’m cognitively declining.I wobble due to my gait changing, not because I’m getting older. My balance is effected due to the signals from my brain, not because I’m getting older”

Light bulb moment for Sharon and one which has stayed with her ever since.

Maybe that’s why many question our diagnosis because we’re not the right image in people’s minds? We don’t have the wrinkly hands, the sad ageing faces as often depicted in the media. We have smiley often young faces. The photographs of us all in Dementia Diaries show this clearly. Take a look:

https://dementiadiaries.org/

Yes we all have days of tears, sadness and frustration but doesn’t everyone? Isn’t that simply life? We have the added tears, sadness and frustration caused by dementia on top of life.

What helped Eva, who is playing “Herself” (who shadows Alice during the play and who speaks her inner thoughts) was the conversation we had about my Inner-self. I frequently talk to my old self and ask for advice, she’s a reassuring presence for me. This helped her understand her role better.

Both actors have succeeded amazingly well but not only been due to their unquestionable acting skills but also due to the fact they listened and learned. They wanted to get it right.

So many others should take a leaf out of their book and…..watch, listen and learn?