Second trundle of the week to York….

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

My shadow on the bridge…

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… 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

What makes people for from unwilling wo happy to accept social care..?

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…🙈🙄


About wendy7713

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

4 thoughts on “Second trundle of the week to York….

  1. I found the description of the topics at this meeting very interesting, as my friend is currently dealing with the issues with her parents around recognizing that assistance for her mother is needed, and at what level. And if the assistance will be accepted. You get involved in some very needed studies, Wendy. Thanks for sharing.

    Liked by 1 person

  2. Wendy I don’t want to diminish the main thrust of the article which was as always fascinating, insightful and hopeful but for me the bit about the silence of snow just was a lightbulb! That is one of the things I love about watching snow but not sure I was consciously aware of the silence. Also you pictures as always are a delight. My favourite this time is the river with your shadow.

    Liked by 1 person

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