A Monday morning trundle to Durham……..

Yesterday saw me heading to Durham for a meeting with a project I seem to have been involved in for years……

After my wonderful weekend in paradise, all I wanted to do was stay snug…..and all I wanted to do was hibernate for the week, but luckily I have a full 2 weeks ahead. Luckily because, although sitting doing nothing is wonderful with dementia in tow, it’s also very bad…..

‘Doing’ is so important. Travelling all over the country, I call my Suduko, as it keeps my brain exposed to different environments and different conversations, but it is exhausting and at the end of each day I describe myself like a Duracell bunny whose batteries have run out…..

I hate it when I see people just sitting in care homes…..doing nothing……believe me, there’s nothing more comforting than sat doing nothing with dementia…sat with your eyes closed with no stimulation is HEAVEN…no stimulation to distract or test the brain cells….just silence and calm in the head…..but I’m lucky enough to know how bad that is for me. Because if I sit for too long I can feel dementia start to seep into my brain and my body and it hugs you and you feel suddenly safe in its grasp. That’s why so many people with dementia want to just sit. But that’s dementia cruel way of giving you that false sense of security that doing nothing is good when the exact opposite is the truth….keeping your brain and body active is my way of keeping dementia at not and not letting it win…

Anyway, back to yesterday….it was a freezing sunny morning and I noticed the familiar taxi arrive early and park up to wait for me. I’d actually got everything ready the week before. I’d typed all my talks for the run up to Christmas the weekend before and I’m so glad I did. I was on a roll a week ago typing, whereas I felt empty of words this weekend.

We trundled towards Beverley, passing the sunlit Westwood….

The trains started off delayed….and the information boards had decided it was too cold to work, so no one knew what was going on…but they suddenly sprang to life telling us of the short delay…luckily I had a long wait in Doncaster so no panic necessary…….the train had not got the memo to clean the windows so no piccie of the sunlit Humber this morning 🙄

I’m part of the Advisory Group for a Durham project called “Co-Designing Dementia Care’

My friend from Bradford, Prof Jan Oyebode is part of the actual research group along with other lovely people. Richard from NHS North of England Commisioning support always books my tickets for me and looks after me well.

I had a long wait in Doncaster so took a trundle inside shopping centre and saw this perfect sign…

The train to Durham was also delayed but only by a few minutes. It seemed to be rammed with Christmas shoppers and a group were in my seat 🙈…..I ambled up and down looking for another window seat as I knew many would be getting off in York……and I found one…

I arrived in Durham to find Jan and Chiara waiting and we were joined by Nick and Barbara, and it turned out we’d all been on the same train! …..we all piled into the taxi and trundled towards the John Snow House, passing these lovely Christmassy reindeer languishing in the middle of the roundabout…

We arrived to find the rest of the people waiting including Mariri who had flown in from Switzerland! There was a mix of people, local Director of nursing, commissioner and researchers…..the mix of people is one thing I like about this project.

We started off by discussing the proposal of an Out of Hours care improvement pilot. They want to prevent avoidable admissions to hospital via community care. The pilot will take place in the North West of Durham. They worked out that around £4600 will be saved per admission. Although Nick cautioned against the use of the word ‘saving’…..for me…. More importantly people with dementia remain in their own home.

The pilot will also be exploring the ‘real need’ that exists in the middle of the night.

They would employ 3 healthcare assistants and I asked what extra training they would receive? The Director of Nursing said how there’s a potential for the Admiral nurses to play a support role here.

By only avoiding 8 admissions, this would pay for the intervention so any more would be a bonus.

The next steps are taking it to the CCG (commissioners) to hear their thoughts…….

The next item was linked to the first and it was around Emergency Healthcare Plans.

They are documents to help communication in an emergency for the individual to ensure timely access to the right treatment and access……..

So they’ve done an audit of 50 plans to see if they’re completed correctly and then whether they actually work in practice….Gary Fry performed some interviews with a range of people including medics and carers . Most of the forms had been completed on transition to care homes……..and had generally been thoroughly completed.

Like every bit of paperwork stating our needs and wants…..they can often be cast aside and ignored or forgotten…..😔

We then went backwards on the agenda to Chiara on Project 1 intervention. A recognition of unmet need of information (usually of local services) for people with dementia and their supporters.

A working group suggested a check list, one that isn’t necessarily accessed but it needs to exist. From June this year, CPN’s (Community Psychiatric Nurses) have been handing out this leaflet. Ethics were then asked if they could interview people asking what they thought about the leaflet and they’ve only just got ethics approval so can now start interviewing people.

So the next step is to start evaluating the use of the leaflet….I said they should ask if people found anything new from the leaflet. They might have known something existed and the leaflet provided the contact details, but did they find anything new they didn’t know about. And I also mentioned the lack of financial support detail e.g. council tax. Goes back to my saying of ‘We don’t know what we don’t know”

But as Richard said, small comments like that can lead to the leaflet being updated regularly as it’s a living document.

Area 3 was next up after a short break……”The Dementia Reminder System”……….

At the workshop, supporters said how they were inundated with information at point of diagnosis. So they decided how a ‘reminder’ would appear every 6 months. The Gp practice will pull a list every 6 months of those patients with a dementia diagnosis and a letter and leaflet will be sent to each person.

The researchers will ask the practice managers if this happens and whether there were any issues. The local ethics committee has refused the researchers access to the people direct. So the researchers have to rely on the people contacting them, which isn’t good, but is out of the hands of the researchers – they have no control over anything.

I suggested adding a smiley photo to the covering letter…..

Dissemination……This has been a project which has lasted 5 years…..the whole point of this project was to work with stakeholders (Commisioners) to provide better dementia care. Jan was asking where we needed to diseminate…..locally they could hold a workshop with all stakeholders who have been involved, which could bring together the people with the dementia, carers along with commissioners and Healthcare staff.

It may have been 5 years since all this Action Research  started but this is an amazingly long time in Commisioner world but researchers always find different things happen along the way that change the aims and directions…..for example it was originally ‘Co-design’ in the title but it’s actually been ‘Co-creation’…..co-creation of knowledge design………

It’s enabled us to “Learn what we think is not what people want” said the Director of Nursing…..a nice way to end……..as my brain was shutting down …..

I do love Durham and can’t believe I didn’t take piccies of the actual meeting 🙈 only outside…

P.s….we got to the station to find rail chaos……but the chaos that followed and trundles in taxis and coaches deserves a blog all of it own tomorrow………🙈

About wendy7713

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

2 thoughts on “A Monday morning trundle to Durham……..

  1. Wendy, I totally connect with your opening information about, advocacy activity vs withdrawal. Like you I sometimes yearn for short opportunities to isolate my brain and just withdraw into silence, but as you say, realise that although comforting this is a dangerous place to be. I tell people who all want to advise me to slow down, that advocacy is my “therapy”, it is what keeps me functioning.

    I’m also excited to see that you are involved with an out of hours care improvement plan, such a vital part of keeping us, both, out of hospital and in our own homes for longer.

    I love all the very practical areas to which research is heading – the GP reminder, the emergency care plan….all fantastic.


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