As this is published I’ll be on another journey to paradise – more tomorrow. Last weekend’s visit was snuck in as an extra so I could be there for David and Sylvia, so this week was already planned and seemed a shame to cancel it 🤣…..and I’d be able simply to relax….
Anyway several months ago I was asked if I’d like to donate a couple of written pieces for a forthcoming book aimed at raising funds for Hull Samaritans ….Samaritans are there for people when they desperately need someone to simply listen and hear their voices, the turmoil in their life – such a worthwhile charity which is nationwide but this is to raise much needed funds for my local service.
“Every 7 seconds, the Samaritans receive a call for help”
As their flyer states about the book…
Well I received my copy on my way to town yesterday and I was overwhelmed by the high quality of the publication.
People from all walks of life, from photographers to artists, writers to psychologists. People of every age with some lovely pieces by schoolchildren.
Lots of beautiful images depicting ‘listening’ as well as all the written contributions….
”Open the book and you will find poems, stories, paintings, photographs, articles and songs – all about listening and the importance of silence”
I wrote 2 pieces, a poem and a prose.
A poem called ‘Listen’
And the prose going by the title “When people stop listening”
A truly inspiring book simply to have in your collection and the fact that it’s raising money for such a good cause is a bonus….
There’s an early bird price of £7.99 incl post and packaging if you order before July 22nd (you might have to check if this applies to outside of the UK) and you can order it by clicking the link below.
Many moons ago before ‘Covid’ as a word we knew well, I met some talented young people writing a musical, ‘Once Lost”…. They came along to meet me, in what was then, ‘my office’ – the local café attached to the pub. Sadly the pub was also a victim of Covid and closed last year 😢…..they had very personal reasons for writing the musical as two of the team had grandparents living with dementia. They are such lovely kind people and stole my heart the moment I met them, especially since they brought me a box of Yorkshire tea 😂
On their web site it says:
“Our aim producing ‘Once Lost’ is to use our skills as songwriters and producers to raise awareness of dementia in a unique way. We want to spread the message that a diagnosis of dementia doesn’t mean it is the end. People can still live happy lives with the illness.”
I’m so delighted that our website has finally come to fruition. We’ve been working on it through the whole of lockdown and yesterday it became live……it’s aimed at people living with dementia to either contribute tips and strategies of their own – solutions to problems that dementia has thrown at them, but also for others to look at what others have done in the same situation. Please take a look….there are contributions from many playmates.
HUGE thanks to our able enabler Philly Hare for making this possible 😍 Here was the gumf release yesterday from Innovations in Dementia….
This new website offers people with dementia an easy way to source and share Tips that will help them in their everyday lives – especially (but not only) in the time of the pandemic. All the Tips are contributed by people with dementia. The project demonstrates their resilience, wisdom and adaptability in coming up with their own strategies to ‘outmaneuver dementia’.
The Tip-Share project was made possible through uplift funding from the National Lottery Community Fund for projects during the pandemic.
We already haveover 600 Tips, which cover 9 themes:
The coronavirus situation
Life at home
Life outside home
Emotional and family life
Friendships and peer support
Connecting and communicating
Money and legal matters
Health issues and symptoms
Work paid and unpaid
With the help of our advisors, George Rook and Dr Wendy Mitchell (both living with dementia), we have worked very hard to ensure that the new website is as accessible as it can possibly be for people with dementia.
They can look though the Tips, send in their own, and even request new Tips on issues they are grappling with. We hope that helplines, dementia workers, friends and families will publicise the website so that the people they support know about it.
I woke up yesterday, having been cooped up inside all weekend, by either the weather or my body simply not wanting to play ball…..it’s not like me to stay indoors all weekend and yesterday I decided I’d have words with myself and venture out whether I wanted to or not.
I had the morning to myself but no shopping needed and the thought of just sauntering around town for 90 minutes didn’t appeal, so I decided to try and walk into town and then catch the bus back….
I trundled along in the sunshine, taking piccies as I went, the first at the village pond
And then passing by the beautiful gateway of snowdrops
and on out of the village heading towards the Westwood, stopping every now and then to take in the view….
Once at the Westwood I was in my element taking piccies
And almost forgot the time……I suddenly had to get a wiggle on otherwise I’d miss the bus back and have another 90 minutes to wait 😳🙄…….
One last piccie
The bus was in as the bus station came into view……..
On the journey back, it became apparent that I’d been spied walking 😂🤣….and they were glad to see me taking the bus back. But then a story unfolded of the Westwood that I hadn’t heard before…..many years ago there used to be 2 kennels, one each side of the road where now lays a cattle grid, which housed 2 collie dogs who were in charge of keeping the cows on the Westwood side of the road. Every time the cows ventured near, the dogs would bark and the cows would get the message. When the dogs were no longer needed, one of the villagers Took one of them in , but eventually had to take it to the dogs charity as it just wouldn’t stop barking all day long – after all that had been it’s job for many years…..
I love the tales of old that I hear from those villagers who’ve been there most of their life…..
My village bus got back at 12 and I being picked up at 12.30 by Katie from the Humber research team as she was my taxi driver today taking me to the Trust Induction. New staff, new opportunity to sow seeds…..
We trundled up to the office as we were a tad early so I caught up with the girls in the office
As 1.15 approached we made our way across to the lecture theatre for the Induction session of new staff in the Mental Health Trust.
Mandy head of Patient Carer experience, joined me and after a hug we were ready for our double act.
It was a smaller group today – only about 25 newbies….and Mandy started off first….
“The carer is just as important as the patient”……..
The patient and carers voice is “very very very’ important here at Humber Mental Health Trust. She went onto say how many people don’t like the word ‘carer’, don’t like to be called ‘a carer’……as a husband, for example, likes still to be a husband…….
The Friends and Family Test should be handed out by every department – it’s the biggest quality measure the NHS has, to highlight the good and bad in all the services.
From April the question is changing from “would you recommend this service to your friends and family” to
“Overall what did you think of our service today”
“Would you recommend…..”……wasn’t appropriate as people may be in a service they wouldn’t choose to be in so obviously they wouldn’t recommend it. A child having an injection, wouldn’t recommend an injection……so the question needed to change.
“We rely on you to to enable patients to have a voice”…….”every service has a Staff Champion of Patient Experience Forum….but we always need more.”
The NHS 25 years ago was very ‘staff driven’…….now the tables are turning for it to be patient driven, equal partners with the public…..that’s the ideal…….me thinks not quite there yet but Humber are trying…..
“Clinicians have the specialist expertise and toolkit to deliver care but the public are on the receiving end and their views of that care are key”
Mine turn for the last half hour
……..talking about anything and everything including….:
“I’ve had some amazing opportunities that I wouldn’t have had if I hadn’t been diagnosed.I talk all over the country in many different setting because that’s how I believe I can influence change….obviously it’s exhausting and takes days to plan even though people think I just magically appear but I always say I’d rather die of exhaustion than dementia.
But my greatest achievement so far has been the release of my book Somebody I used to Know, which has become a Sunday Times best seller. One reason I’m showing you it is because it shows you should never give up on yourself, others will do that for you…and this is the proof ..”
And that was the end for another month. Katie took me back home and the bloomin’ rain started to fall once more so I stayed snug for the rest of the day, flask at the side of me, cuppa in my hand…….
On Friday I ended my week with a trundle to Leeds to the brand new renovated Leeds Playhouse. It’s been closed for a while while they create a shiny new theatre and, even though it reopened a while ago, Friday was my first viewing.
I’ve done loads of things with them in the past under the invitation of Nicky Taylor, Theatre and Dementia Research Associate, from reviewing a showing of Chitty Chitty Bang Bang, to advising on and working with actress Sharon Small on her portrayal of the stage performance of Still Alice. But I was there Friday, to see the progress of a new play by writer Frances Poet, called ‘Maggie May’. Apparently I met with Frances a couple of years ago when the idea was a seed and after meeting me and many other playmates involved with the theatre, she wrote the play.
We were there to see a few scenes having a run through, especially around ‘the fog’ that Maggie was experiencing, to give our take on the storyline and performances.
Anyway, another train trundle to get me there, this time 2 trains, changing in Hull.
A bitterly cold wind hit my face as I went out of my front door to join the waiting taxi. A newbie driver to me. Before I’d left, the weatherman had told me it was due to be a rubbish day and more heavy rain was forecasted 🙈….must be dreadful for all those people in flooded homes, or with the water creeping ever closer, to hear the news of more rain on the way 😔
Changing at Hull, my next train was waiting….i climbed aboard and then as the departing time got nearer, I realised I was by myself, the only person in the carriage……very strange at 08.15 in the morning 😳……but then the reasurring dulcet tones of the guard confrimed I was on the right train, but for some reason today, I had it to myself 🤔……..weird…maybe it was the forecast that had put people off travelling 😳…..
Anyway we trundled our way …..it felt like we were trundling through a very sad grey world as we passed by the Humber, fed up of all the deluge of rain of late and desperate for sunshine and warmth….or was that just me…..?……… onwards to leeds….
As I said, me and a few other playmates had been invited to watch and comment on some of the darker scenes from the play including Maggie’s ‘fog’ and her fears. I trundled down through the city to the new vamped playhouse….and it looked very different
I suddenly saw Nicky coming out to meet me…..gone had the long steep steps up to the entrance and now it was on street level straight into the café
We got one piccie of me in front of the advert for the play and the message to the right, on the wall of the theatre says…..:
“I Get Knocked Down But I Get Up Again”
Obviously referring to the theatre revamp, but very appropriate for me too…..😂🤣😂
……I was the last to arrive as 2 other playmates and 2 supporters were waiting all ready……..
We made our way up to the rehearsal rooms a short walk away and all the actors were there waiting……along with Frances the writer, Jemima the director,🙄😂
We got our cuppas, our name badges in situe and made our way to the Directors area where we would sit and watch the scenes….first task was a piccie of us, all present and correct…
The they set the scene for us…they’re trying out a little section today – 5 scenes and whether that group of scenes work and whether Maggie experience feels truthful – do we get enough of the difficulties but also the resolve and lightness that it will lead to …..
The blurb for the play states”
”Maggie and Gordon first met in 1971 dancing to the sound of Rod Stewart. Now in their sixties, and still very much in love, they’ve been finishing each other’s songs all their marriage
At this point, Maggie lives at home with Gordon her hubby, she’s been hiding the diagnosis from her son and best friend ….
There’s a TV screen that adds prompts for where were are, who people are and Maggie’s thoughts………which I think will work well on stage with a screen each side.
The actors appeared and introduced themselves…..
Eithne – Maggie May
Maxine – Jo, Maggies best friend
John – hubby Gordon
Mark – son Michael
Shireen – sons girlfriend Claire
The scene started with Maggie in bed…..and hubby coming to see her in bed when they were suppose to be going to her group….but today is a foggy day…..and we saw Maggie going through the trauma of a foggy day – not to give too much away, but this is a very intense scene but with such a purpose and message that it can’t be ignored.
We saw her next in the hospital bed……with her best friend visiting.
“Do not compare your scattiness to my life…” and ‘If I was here with stomach cancer you wouldn’t say ‘oh yes, I often get tummy ache’
said Maggie as her friend started to compare her forgetfulness with her own – one of my favourite bits….
The play is part musical with a lovely bit between Maggie and her hubby singing…and one of these singing outbursts will end the first section…..
which had us all jigging about in our seats…
We sat in a circle and discussed this scene in detail, the scaryness, the reality. We had some brilliant ideas between us and it was interesting to hear all our views, as there were differences…….as we all have different experiences…..we suggested ways to enhance some messages, applauded some bits and suggested changes that might be made in other areas..
Frances and Jemima were jotting down profuse amounts of notes….
The songs and singing, along with the darker times of the start of the scene depicted the real life roller coaster we live through…
It runs for 3 weeks in Hornchurch from 13th March…
Something magical to be involved in once more at the Playhouse and the actors breathed a sigh of relief as they took in our comments and praise at the end…..can’t wait to see it in April……..and time for one last piccie of everyone together
Yesterday I was back in York, this time at York University……..strange isn’t it as before dementia entered my life I’d never been inside a university ….now I’m in and out like a yo yo…! Never give up on yourself……..
Anyway, I opened my curtains to flakes of snow silently falling…..I love the silence of snow. Rain is heard loud and clear, but snow silently appears and has the double edge of beauty and hassle……
I checked my calendar for the time of the taxi and notice I’d scrawled 18.15 as the time they were picking me back up on my return journey…..this didn’t feel right. Luckily I checked my trains and it should have been 17.15 🙈….note to self to change when I get to the station…..confusion with numbers again 🙄
By the time the taxi driver waved at me from his car, the snow had stopped and then I had the treat of a trundle to the station with the driver who looks at life like me. He adores the detail of things and I listened to him talking about his love of driving and how he often takes to the minor roads just to see the gems of countryside that would be otherwise missed. He also spoke of the detail on buildings usually missed by passerby in a hurry to get somewhere. He mentioned the devil high up on a building just outside the north bar in Beverley, which I see from the upstairs of the bus, but how many locals know it’s there?…..never forget to look up as you miss so much detail, so much interesting, unusual beauty……
It only takes us about 12 minutes to get to the station but it went far too quickly today and I could have chatted for longer…..but his next fare would be waiting and my train was due, but a lovely way to start the day…
I was trundling to York to meet up with academics Louise and Mark along with playmate Maria Helena and hubby David. We were helping with their study and this meeting was all around planning for the interview stage, our role and the questions.
It was this study that had allowed me to attend my first ethics panel and I was delighted that the panel decided we could have ethical approval, so finally we could get started.
The train was direct from Beverley so no changes and the Humber was showing signs of the high tides of recent weeks
The damage from all the recent deluge of rain and storms clearly seen along the route especially as we approached York….
but today, we had sunshine today, sunshine mixed with cloudy skies, snow falling in the distance, the haziness being the giveaway…a real mix of weather as company…..
I arrived in York and took a sneaky trundle to the bridge to see how the floods were doing….still high but lower than they were Monday
I love the fact that Maria Helena has been given a chance to contribute as she is in the later stages than myself, but her contribution is just as valuable but shown in a different way, through emotion, through smiles and grimaces, through boredom and engagement. But sadly, when I got there, David told me that Maria Helena now lives in a nursing home, which David said was a blessing really…..how life can change overnight …..
So after hugs from David, Mark Louise and Sue, an ex mental health nurse who has been involved remotely before, we started..
Mark started off by talking about our ethics experience. But then he mentioned how ethics check on the ethical process of the research but rarely comment on the ethics of practice out there already….interesting….
The project is called: HOPES – “Helping Older People to engage in Social Care” – academics do like their acronyms that I can never remember so had to ask…🙄😂
Mark went through the agenda – filling us in in on the workshops they’d held – they’d been recommended not to include us at that stage as Health care workers might be reluctant to be open and honest if we were in the room.
We then had to decide the interview format.
So we’re talking about social care and the everyday needs that people have in their lives – the practicalities of personal care, support around the home, etc.
Sometimes a persons dementia or mental health can be a factor in not wanting to receive help, which becomes a problem for the person themselves, possibly making them more vulnerable. On the other side of the coin is the care worker finding the situation difficult to cope with.If the help is offered in a way that recognised and adapted to the person then maybe more would accept it.
So we’re looking at ‘specialist support workers’ who are very experienced in complex care. We want to know what they do differently, what have they learnt that can be shared with those less experienced maybe.
The trouble is ‘specialist support workers’ are not recognised as ‘professionals’. So they have ‘softer skills’ – the interpersonal ones. The ones we’re working with are supervised by professionals, so we’re not talking about people who simply provide care in the home and have 15 minutes before they disappear. They all have experience of helping people with dementia or mental health needs.
Not every area has these ‘specialist’ support workers….post code lottery once more…
So basically Marks slide says it all about the project
So the bit in between is ‘What does the specialist support worker do to make this happen’ – that’s what we want to find out…
They had no trouble recruiting for the workshop as there’s been so much interest in the project and they had support workers from the NHS and private organisations, which was wonderful to hear.
They gave the attendees 3 case studies, one where the care worker process had broken down, one of someone living alone and the other a Bangladeshi family. So they asked the specialists to say what they would do, breaking it down into 5 stages – before they go out to see them, meeting them, establishing rapport, introducing social care and handing over.
The group were very open about techniques they use. I said how that in itself was interesting as they’re not bound by rules and regulations of a professional body so they almost come up with their own rules and techniques. Even down to whether to wear a uniform or not. What’s the least threatening approach to this person. I used to use this thought many moons ago when I interviewed people in their own home. I would wear a suit in some areas and purposely not wear one in others, just to make people feel comfortable…
The support workers are trying to avoid people having something serious happen to the person, all others avenues have been tried and they’re brought in as a last resort before the safe guarding laws take over…
Building up a rapport was the first key respectful task they had. They all apparently seemed acutely sensitive to the needs of the people they were working with.
It felt like there may be lots of revolving doors of people coming back through the system when the system breaks down again at hand over back to basic care workers once they’ve done the hard work – built up a rapport, engaged them back into the social care and them introduced them to normal care workers.
Time for a lovely chatty lunch and then started again.
Between now and August we’re going to be interviewing support workers, their supervisors and people who have experience of receiving social care. Me and David would be involved in this if people allowed. So we talked about this process and the bits of information we wanted to get out of the conversation….
We went through the types of questions we might ask, the way we might ask them. Very interesting and the thoughts of me and David were very much taken on board. Fascinating process – who would have thought coming up with questions was so exhausting to get it right and to get the appropriate questions asked in the right way…..🙄
Four hours passed so quickly and we ran out of time !
Sooooo many questions raised….soooo fascinating…..I see these people as ‘trouble shooters’…..trying to sort a complex issue and then handing over before going to the next person in difficulty. Underpaid and under appreciated for the value of the work they do.
There is very little training for these people – basic care work training is not high enough, but nurse training is too high however there’s nothing in between, they devise their own ways….
Really looking forward to being involved with interviewing……..
One last sneaky piccie I took in the morning in the Museum Gardens …….’a host of golden daffodils’ as I cant believe I didn’t tak a piccie of us all…🙈🙄
After the trauma of Monday, I needed something to lift my spirits yesterday and if anyone could do it, it was students…….I don’t normally let things like this dwell in my head but the PIP process isn’t just a one day event…it affects you from the moment that brown envelope drops through the letterbox. That sinking feeling of doom and trauma….but today is another day and I was so hoping the students smile at Bradford University would bring a smile to my face….
A lovely sky welcomed me as I stood looking out of my morning window…
I was heading for Bradford to the Doctoral Training Centre (DCT) to have an update from all the Phd students that I’d been following from their first day. The DCT is one of the things the Alzheimer’s Society have got right. The students are funded by them and I was there as a Research Network Monitor today.
I’d be seeing the lovely Sandra and Barbara along with other wonderful people at Bradford so my hopes were high for a happy day.
I saw the taxi driver slowly pass my house and guessed it must be someone new, well he was to me. He wasn’t the talkative type and insisted he’d been with them a year so we trundled along in silence. I often wonder if people are feeling sad, shy, or just don’t like to talk…..no one knows what is happening in peoples lives to make them as they are in that moment.
Once at the station, I checked with my smiley face at the taxi office, that I’d booked a taxi home and then joined the morning commenters into Hull…I’d set alerts from the train company so that every time I travel, they send me a txt to tell me what platform and whether there’s any problems…..wonderfully helpful.
The first train was on time into Hull and we now have a direct train from Hull to Bradford, so I don’t have to change at Leeds! I know it’s probably not, but feels like a long time since I passed the Humber in sunshine…
Sandra was due to pick up my train in Leeds and had txt along the way. Me thinks it must be half term as the carriage was full of excited children….well 4…but sounded like a whole carriage full 😳😂…so I went into my own world of playing solitaire…..
Leeds came, the train emptied and I saw Sandra wave at me from the other end……after hugs and a catch up we’d arrived at Bradford and made our way up the windy cold hill to the Uni where a cuppa tea was waiting……
The students started to arrive and the room came alive with chatter…..before I knew it, Barbara called us all to attention and we started…..by introducing ourselves…..there were students, their supervisors and a visiting Professor Myrra for the Netherlands…
We had an hour for oral updates from the students…..
Paul was up first…investigating how people with dementia manage their medicines at home and the role the community pharmacists can play. He wants these questions answered….how people with dementia manage their medicine?, especially the implications of living alone or with different types of dementia. How community pharmacists support those people and what should be the way forward…..
He is organising focus groups and follow up interviews in their own homes, taking photographic evidence of their routine. Next would be a focus group with community pharmacists who would see the photographic evidence from the first group so they could see the strategies they use or not……he’s still at the ethical approval stage, but is now close to achieving that
It became apparent from Paul and from other comments from the students that the ethics process is difficult…….
Akhlak was next…….he is looking at the step changes in caring for someone with dementia at home in the South Asian community – is there a role played by gender? Does Faith play a role? He has had challenges with recruitment due to the stigma associated with dementia in this community. He’s found you have to have trust and rapport with people for them to talk to you so building trust has to start before any conversations can take place….Intergenerationally there are also differences of opinion . Akhlak said some really interesting and practical things around Faith and the part faith can play in South Asian communities…..how for some it is extremely importantfor and for others, not so. Stresses the need to look at what’s important to the family that can help…..
Angela next…..looking at transition between settings of Hospital and back to Care Home, so exploring the role of the nurse in hospital and the nurse in a care home when the person leaves hospital and goes back to the Care Home. She’s spoken to Care Home nurses and hospital nurses.
She found it sometimes depended on the type of ward the person with dementia had been on. A short term ward may not have the time to spend on connecting with the care home in detail. She found too many variables affecting the result…..and found the challenges lay in the release of the nurse from the ward to be able to speak to her.
As Sandra said, the variables must explain the inconsistency in care and transition from hospital…..it also depends on the individuals experience of working and understanding the needs of people with dementia….
The communication between hospital nurses and care homes nurses seems to be a barrier to the creation of a good transition…..Nurses in hospital rarely start off working in a Care Home so have no understanding of the needs……they don’t see each other as equals.
Helen was last before lunch……she was looking at Women Living alone when diagnosed with dementia and the things they developed not to go into a care home. She looked at it from a feminist point of view. When she tried to find people in Care Homes that had lived alone, she met lots of gatekeepers…disempowering people with dementia. She felt it was to do with being a black woman. She was met with a lot of resistance and prejudice. The participants she did get were all from word of mouth and not from organisations….they were all living alone when diagnosed.
All the 4 participants lived alone before they were diagnosed and it’s how society can enable people to remain in their own home…..
The 4 participants surprisingly didn’t speak about dementia. They spoke about other co-morbidites. They all stayed in their home with support. All varying with different types of support. Some had minimal support. One had her family move in with her and she was able to still socialise…whereas those who just had someone come in to do cleaning, the laundry etc, simply felt old…..
Four fascinating and important studies……
Lunch time and time to chat and catch up and take a piccie of the 4 students
After lunch Murna spoke about the future of the Doctoral Training Centre…there are many other Phd students who aren’t funded by the DCT…..they are seeking funding through other areas for the other opportunities to appoint other PHd students. However they want to continue this model of having a twice yearly meeting with ‘the family’ that is us……it can be very lonely being a Phd student, said one. I said:
“It’s also very lonely living with dementia and caring for someone, and coming together with students is like a hug from them knowing that they care enough to do their research, seeing the passion they have for their subject and desire to change practice but also the students receive a hug from us knowing that what they do is appreciated – it’s a win win…….we help each other.”
As Sandra said….there needs to be a helicopter view of all the interlinking that exists between each project of our DCT students…all the different transitions….we spoke a lot about the challenge of what happens next……to me it’s the duty of the Alzheimers Society to fund evaluation of the interlinking in the form of a grant to enable them to produce a paper which would be invaluable in showing the connections between all projects and lessons learnt…
Students have such hardship when their funding comes to an end yet life has happened, unexpected breaks have interrupted the process. But also there has to be an acknowledgement that social research is very different from clinical research as it’s involved in ‘the now’, what’s happing in society now.
The students here are also from clinical practice…..the easy option is to go back to the their clinical world and leave research. Admittedly they would take back a better understanding to their clinical world and change practice, but short term contracts and access to roles in research aren’t an easy route. Their projects need to be implemented…..but they rarely are and is very frustrating for them and us…..
We could have carried on for hours, but we had to stop and have the Monitors meeting with Murna, Jan, Sandra, Sandra and me….we sat for half an hour chatting about the students and clarifying what we needed for our report. Sandra Duggan offered to write the report this time……
We all agreed on the value of lay panel, like ours, to support the students through their studies. We can show them the reality and why they do what they do is so important for people living with dementia………brilliant day and yes, after the trauma of Monday, they did make me smile…..
It was a night of sleep, wake, sleep, wake….my eyelids firmly closed in exhaustion from the day but my eyeballs wide awake and staring into blackness…..we’d had a lovely meal the night before, a meal of sharing wonderful stories, sadness, laughter and everything in between …can’t believe I didn’t take a piccie!
My eyelids finally secummbed to the mischievous eyeballs behind them and opened for the day. Showered, I settled down with a cuppa to go through my morning routine – solitaire, scrabble and my new found friend ‘Wordscapes’….just as an extra when my friends have yet to take their turn at scrabble…..
Philly knocked for me at 8 and we went down for breakfast before the start of another heavy day…..but at least my head felt better…even without sleep……🙄…(that’s dementia for you – just no telling from one day to the next)
Over breakfast we had a wonderfully emotional and passionate discussion about Personal Independence Payments (PIP) as I have my next onslaught starting into the system on Monday. The distress and emotional turmoil this is causing for people is beyond comprehension so we decided we need to do something…..Philly wished she taped that conversation as it was so off the cuff so filled with detail from each of us……..
Packed and ready, we met in reception and trundled to our venue for the day…the same lovely one as yesterday…….
Today it was the Pioneers meeting. We sat chatting while we waited for Mhari and Hugh…….we were in a different room today, a smaller one. It was Georges first meeting as a Pioneer and Mhari and Hugh had travelled just for the day.
I asked for a piccie while we were all relatively fresh
Philly started off telling us the plan for the day ..and then briefly spoke about yesterday and the ethics of research and what we might do differently. We will come up with a simple ethical framework to share with the next lot of grants and ask them how they’re meeting our ethical framework…..
We sat and discussed the make up of the panel and agreed we need an academic to sit and advise us but with no vote….someone with expertise in their field who would be happy and understand their role as an advisor ……
We, as pioneers, all volunteered to be on the panel and discussed which academics we trusted to work in the way we needed and who we thought might be prepared to work our way……
We’ll combine ethics and decision making for the next lot of applications for research from people with dementia at our Pioneers in our Woodbrooke meeting in June…
We decided we would call ourselves DEEP Ethics Panel…..this is the start of a much bigger piece of work which will inform the more formal ethics committees and hopefully change and question current processes…….
We stopped for a cuppa and cookie……and moved on from ethics to the 10 new projects that will get funding in June. Groups of people with dementia from the DEEP Network, deciding what they want to research and applying for a grant.
Today we wanted to discuss the process we had last year and what might needed changing after the lessons learnt from the past year….not that we could remember, but that’s why our ‘able enablers’ are there…..😂
We had 10 decisions to make….so Philly had to keep us on track and crack her famous whip 😂🤣
We went through the list of ideas of what it means to be ‘inthe driving seat’ of a research project….the guidelines we expect groups to follow when conducting research while realising that everyone’s contribution could be at different levels of ability…..
Much conversation took place around emotional decisions and factual decisions
We had a quick break then the final session before lunch. We came back and Philly asked me to read my blog about yesterday….which was as much a surprise to me as everyone else!
Philly then fed back how they’d received the numerous emails from the ally academics who attended the first day. They were all full of passion, full of enthusiasm and hope for what we were doing….we know some academics would want to be involved for the wrong reasons, but those allies seemed to get it in my opinion. We all have our different opinions….
We had offers of support from them….many academics find the ethics process difficult and someone suggested finding out from researchers themselves what they find difficult that may help us in our campaign to change the process..and highlight the changes needed.
Before lunch the final item was around an idea from Pachael and Philly about using money still available on a project on Power and Control and what barriers exist from us having control over our lives……we came up with loads of ideas…..lots of food for thought……
Which brought us nicely to lunch in the café…….and me and Rachael had a lovely Celeriac and mushroom soup and warm bread….🤗 hug in a bowl……
We were the only ones in the café….a lovely café with lovely people serving lovely food……a great find of a venue….and they had pictures on the wall, some of them depicting the music of The Beatles…
We made out way back for our last hour before the end of the day…..
For the Funders, the National Lottery, we have to write an ‘engagement plan’ ….who we want to engage with and influence as the National Lottery want to help us…….we obviously want to engage with academic researchers, engage with Universities, with conferences where we can influence a change in views…..
The last idea was around an article for a journal…..Disability and Society journal….
Our final discussion was around the Event in May to celebrate the completion of the first lot of projects…..each of the 10 groups are invited to share their successes and challenges….and hopefully the funders will be there….
I said we needed to end the whole session by having everyone leave with people saying…..”WOW! What’s next??????”
Our last task was to record a sentence about how we feel Dementia Enquirers is going and I said:
“The seed that was sown over a year ago, is now growing into a youngster and you can see the adult developing and gaining character. I’m leaving this last 2 days exhausted, but once again full of renewed enthusiasm for what’s still to come….”
As Agnes said “My tired is even tired….But it’s nice to feel tired and have achieved something…..” And off we went our different ways home………the days a blur already…..
A busy week travelling this week so yesterday was another trundle down to London but this time for 2 days…..
It was going to be 2 days of full on Dementia Enquirers with the first day taken up by an Ethics discussion – the issues for people with dementia and ethics committees, the barriers we face and possible solutions…..
The second day would be a meeting of the Pioneers – agreeing a process for the next lot of grant applications…..so 2 heavy but fun packed days with playmates, and our able enablers, Rachael and Philly.
Anyway before the start I had to get there…..a silly o’clock start again as I’d decided against staying the night before due to being in York and I prefer travelling on the day and staying just one night. I’m also not keen on travelling at night, which is what I would have had to do on this occasion. I find travelling in the dark disorientating but in the morning, it eventually gets light which makes it more possible.
The taxi people had asked me the night before if I could be ready 5 minutes earlier so at 05.40 this morning I was ready and waiting with my suitcase and the taxi lights appeared. It’s often a quiet trundle at that time in a morning as neither of us are quite awake. It was all going fine until we got to the station, then I realised why they’d asked to pick me up early ….because he had another run for the same train straight after. He started to rush me and rushing me never works. I hadn’t been organised so didn’t have my money ready, so fumbled about dropping coins and getting in a pickle 🙈…I don’t really know how much I gave him and then must have dropped my glove when getting out as I realised I had one cold hand as I stood on the platform trying to get myself back to normal 🙄…..I’m fine as long as people give me time…….but, of course, when others are in a hurry, they forget that…..
The train was on time, I got my cuppa weak black tea and everything was ok in the world again……it was a very busy train though and agitated passengers trying to find seats and arguing with staff made for a stressful journey on an already discombobulated day…..I didn’t feel right, so instead I tried to disappear into my own world and look out of the window …
Soon the daytime appeared making it a much friendlier world….
I got to London in plenty of time to find this new venue….so went for an amble first …..and ended up leaving my stick somewhere 🙈….I’d had my suitcase to balance on so hadn’t noticed until I went to swap hands…so I had to retrace where I thought I’d been. Turns out I had left it in a shop but they’d taken it to lost property 😳…so then had to find Lost Property, then they wanted ID, and to fill out a form 🤯🤯🤯🤯🤯🤯 but they saw my lanyard and decided I wasn’t a risk and let me have my stick back🙏🙄
Because of the stick panic, I was then in a bit of a pickle about being late and ended up getting lost🙈 and Google took me through a housing estate🤪😱…….went the wrong way …but then I spied a sign on a building in the distance – Lumen, my destination. Playmates were there so much appreciated hugs were given all around…..I went outside into the courtyard just to settle my head…
We finallly started and Rachael and Agnes were chairing the day. We went round and introduced ourselves. Today we had many people there, including playmates and academics who had been invited to help us, from a variety of Universities…..
Rachael whizzed through quickly saying what Dementia Enquirers is – people with dementia leading reasearch from the front on subjects WE think important to research. Along the way it’s hoped that people with dementia will learn new skills, such as around ethics today…..
Dory introduced the ‘Jargon Jar’ to emphasise the need to use plain English otherwise you have to pay a fine. I said “or you can write us a cheque at the end’….🙄😂
There’s a barrier around ethics approvals for our projects – do we need ethics approval? And if we do then there are so many barriers to achieving this. But can we create a new system that’s quicker, a more urgent way.
Tom Shakespeare said the problems are that the ethical process is difficult and complex for the professionals so for those with cognitive difficulties it’s even more complex.
Publications will ask where did we get ethical approval…..or won’t publish, so that’s another barrier in having our work taken seriously.
The Pioneers then spoke about the issues ……mine was:
“Ifwe can influence ethics committees to see our ability differently – to see our un- vulnerability as they are always trying to protect us.It will dispel myths around our capabilities”
We want to create our own system, our own ethics process….”The University of the Dementia World” as Agnes said. But as Tom said, we still have to follow certain laws.
The academics then responded. Someone said there’s a cultural problem as even Junior Researchers have problems when needing extra support and help.
If we create our own ethics process, will it be considered as something to take seriously?
“The more noise we can make about being disempowered, the better”…….said academic Lucy.
There were disagreements and voices raised in the room, but we all have respect for one another and could listen to each other’s opinions. We were hearing the frustrations in peoples voices about some of the current systems. I started to get confused as to why we were here and getting a bit discombobulated but think that was just me and my brain on the day…..
We finished off before lunch with what we need to consider to set up our own ethics committee …..working in pairs, one person with dementia, one academic. I was working with Tracey from Worcester Uni. I found this head blowing just to understand what I had to do…….the conversations going on around me made my head buzz. Took me a while to simply understand what I had to do and Philly came along to help and then Tracey tried to help and eventually I could do enough to contribute, but not to my usual standard…..just not a good day for me…Tracey drew the short straw getting me today! 🤪….
Philly went through all the post its trying to gain a consensus….no easy task!
More discussion followed….on what this process, committee would look like, building trust between people with dementia and academics…but it was time for lunch and a head break…….
After a lovely lunch where the chatter continued……Agnes started off the afternoon to help us create an ethical approval process with people with dementia leading…..
We had to list step by step what would need to be in place……again Tracey drew the short straw and had me….🙄……but we managed to get through it before the discussion took place. But in between Agnes did a wonderful relaxation 5 minutes….and then we continued with the last hour….we each fed back what we’d come up with which put altogether was very comprehensive…..Dory’s group got a brownie point for suggesting a 15 minute video to play each time to help us remember what we’re doing and how.
someone said, at the end…”it would have taken others many months and many more meetings to achieve what we achieved today” but they have one thing we don’t…..time…..
There were lots of different opinions in the room and Agnes and Rachael chaired amazingly …….but as Agnes said
“We rise above our differences to get an outcome” ……..a good way to finish an intense but good day…….and all I wanted was my hotel room and silence…….
Yesterday I had a 2 part day……the first was with my local NHS Trust promoting research and then I had to trundle straight after down to London, as I’m with Dentists on Thursday…… 🙄……
So my friend Cathryn Hart from the research team picked me up at 8am and helped me load my book filled big suitcase into a her car and we trundle towards the Trust Headquarters…..there’s been some lovely skies in a morning and this one was no exception…..
We arrived at the venue and the team were already setting up..Cathryn’s research team stars are one of the most organised teams I know……..but then they have a wonderful manager in Cathryn…..every team is only as good as the manager and the culture that exists…
People began to arrive…..all sort of specialties were represented, psychologists, Occupational Therapists, junior docs…..and many more….
I sat on a table with people who were talking about Christmas 🎄🎄…….how someone had bought a chocolate orange to go into her little ones stocking and was so far on her third one as she kept eating them on evenings when nothing but chocolate would do 😂🤣……..All things advent calendar were discussed….so it started off with everything Christmas and just up my street…….how the simple things are often the best presents…….one persons little one had asked for a sachet of Macdonald’s Tomato sauce 😳 and lemon hand wipes you get in some restaurants 🤣😂……….perfect…….
Emma Wolverson reminded me of Hull Uni online Dementia Masters course – all the course is online which means that people with massively busy lives and in full time work can also do the Masters degree. All their lectures are done on line too so people can be in the most random places. One person was even in the hairdressers having her hair coloured but because it was on line it didn’t matter and she couldn’t have done it any other way…….
Anyway back to the business of the day and promoting NHS staff to promote research in their day jobs….
They started with a lovely cartoon on screen which had been drawn by a research participant….
Because research really does change lives…….
Cathryn started off with the housekeeping and welcoming everyone. The programme was really varied simply to give people a flavour of how simple it is to get involved in research. ‘Demystifying Research” said Cathryn……
She then showed a video celebrating 12 months in the life of the research team…..”Continuing to change lives”…”Research is not just about testing new drugs”
Cathryn apologised for the self indulgent video, but there was no apology needed as it showed their success. We don’t celebrate success often enough…..they should be very proud of what they’ve achieved….they’ve made a huge difference to me…….
The next speaker was Carolyn Scott a forensic psychologist speaking about being a Principle Investigator and what if involved
….she spoke of TIME being the biggest issue as a clinician. Sometimes you feel like you’re drowning with the day too day workload so how could you possibly make time for research as well….? But then an opportunity arose on a hot topic in their area and they thought why not, as it was such an important area to research…if the passion is there and the desire to make a change is there then anything is possible….and the Humber research team made it feel straightforward even during the difficult times, which always happens in research…..I liked her slides as they were straight forward and simple and fun….
As a Principal Investigator, “It wasn’t as scary as I thought”
Alison , an OT from Hull Memory clinic and Maister Lodge spoke next about delivering an intervention in practice…
Social research was new to her as she liked data crunching (an unusual breed!)…😂
She then started to think differently and started asking ‘How useful’ is what we do, the interventions we provide?. She was part of the VALID study (Valuing Active Life in Dementia), she ‘s also involved in the Pathfinder study (looking at talking therapies for people with dementia who also have depression) and is now the Principla Investigator for the PRIDE study.
She spoke of why she does all this in research – because it gives her a bigger overview of her work. It’s good for her personal development and research gives an added bonus to her career as an Occupational Therapist. The Humber Trust supports staff hugely who are involved in research and being involved as an employee supports the Trust values of Caring, Learning and Growing.
“I still get to be a clinician but I’m learning the extra skills of a researcher and more importantly I’m making a difference” It’s a win win….”
Emma from the research team then told everyone about the day in the life of a Research Assistsnt …..she’s been with the team for 3 years and is one of the team that has visited me at home…the team are all made up of graduates from a variety of background including Psychology, nursing and social work.
They work on many studies at any one time they they have to be good at juggling and very flexible…🥰
Their priority when visiting someone for the first time is simply to make them feel at ease and get to know them….wonderful and they all have smiley faces so even more perfect.
Before break a Junior Doctor had videod her talk as she couldn’t be at the event. It was all about her involvement as a Principal Investigator in a study – it helped her develop her leadership skills and it allay her fears of research as Cathryns Research Team were there when she needed them.
Tea break time and a mince pie……..🎄
Next up was me…and the team had made up a lovely slide for me to have in the background…
….part of what I said was:
“Maybe some of you have been diagnosed with a condition you weren’t expecting or someone close to you. It can be devastating not only for you but all those around you. We’re not the only ones to get a diagnosis. You trawl the internet for clues, for help for advice, we all do it. But what do you do if that diagnosis is a life limiting condition? What do you do if that disease has no cure. Where do you look then?”
Dr Soraya Mayet was up next talking about Telemedicine in Addictions…..Opioid addiction ..they wanted to look at ways in improving attendance at 3 monthly reviews by using Telemediicine.
The point of it is to overcome geographical barriers and increase access to healthcare but there’s been little research done on Addiction. Our local area area is 900 square miles and people often have to travel huge distances to attend reviews so Telemedicine may overcome this. Fascinating insight into the region’s Opioid addiction, the difficulties to overcome and solutions ………at the end of the trial they’re asking all involved, participants and the professionals what worked and what didn’t.
Emma Wolverson was last to speak about Caregivers Pro. The aim was to design a website for people with dementia and their supporters. The study came to an end earlier this year was Emma was here to show “you can survive’………they didn’t get the findings they were expecting but they learnt so much more.
Web sites that currently exist give support to Carers so they wanted this one to include people with dementia. They wanted ways to provide peer support when people were isolated. When are people ready to step through that door for social support? The focus groups showed how they wanted a ‘monitored’ website and kept up to date. They also wanted to be shown how to use the website. It did lots of things but it also had a “newsfeed’ a bit like Facebook which provided people with the ability to post things.
They were given a tablet which only had the web site. They recruited 200 people
“People with dementia don’t use technology” was the barrier they kept meeting…….but once they recruited people they proved how ridiculous this statement was. They recruited some people who had never used the internet and they were able to learn……there was no difference in time of usage between carers and people with dementia.
Fantastic interesting findings from the study………especially the time people logged at. The peak time was between 9-10 in the evening. So filling a gap when professional might not be available. Those who used it more were people who had attended face to face training. They’d formed relationships face to face and kept up these friendships on line. So technology alone may not be the sole answer, but combining it with face to face can enhance and improve.
The outcome studies showed no improvement between those that used it and those that didn’t. BUT as Emma said we need to be better at measuring outcome measures in Dementia Research. It’s no good asking us “How have you been feeling in the last 2 week” because all we remember is now…..so it has shown how the debate over Outcome measuring in Dementia needs to be totally overhauled…….which can only be good for dementia research and probably other research.
Emma ended with a slide with apparently quotes from me which was nice