On World Stroke Day (today, 29 October) this was my article about stroke services in Scotland in the ‘Times’ of 6 October 2022……

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Fairness in 2022

Happy New Year to all followers of this blog. Never have the words ‘new’ and ‘year’ been so welcome, for, while we all thought 2020 was bad enough, 2021 was a real challenge with its extreme fluctuating graphs of hope and despair.

I am far too realistic to make new year resolutions for myself, knowing my success rate in the past. However, I am selfishly inflicting  three new year resolutions on our whippet, Archie, as he slides gently into middle age. They are

  1. No more farting
  2. No more scrounging for biscuits
  3. No more turd hunting when out walking

If he fulfils even one of these canine ideals,  he will be a better dog and he will have happier owners, who might then recognise more fully his many other excellent qualities. To remind him, these resolutions are now pinned above his bedroom recess (don’t ask) in the kitchen.

To less canine, more human matters. Thanks to the mixed blessings of Twitter, I have just been reading an article by Donald Macaskill, who is CEO of Scottish Care – you can read it for yourself here. He quotes from the American writer Amanda Gorman and in particular the words

On the lip of tomorrow: a new year dawns

He goes on to make several important points about fairness in health and social care, its funding and societal attitudes towards care, specifically the needs of those affected by the cruelty of dementia. He would like to see all the challenges around these tackled meaningfully in 2022. His argument is powerful and eloquent, and is rooted in his own professional experience.

I’m with him on all of that.

In a small way, I experienced for myself in 2021 some of the fairness issues which arise when the monster in the room is Covid, and other conditions are temporarily put aside. I fractured my pelvis in April. Thanks to Covid I was barely a couple of nights in hospital and on discharge was not able to benefit from the pre-Covid rehabilitation available in our local hospital. Instead, it was expected that my wife would provide all caring.  No professional asked if she was up to the task. We were to deal with this from early morning washing, dressing and toileting onwards. She rose to the occasion, as she always does, and together we muddled through until I was finally back on my feet, many weeks later. It was a small taste of what many others have to deal with permanently.

I remember thinking as I stood, unable to go any further, at the top of the three steps leading out of our house, ‘Thank goodness this is only temporary’. That thought inspired an article for the Scottish Review which you can read here. I couldn’t make my way down those steps, but there are many people who never will be able to do even that.  During Covid, many of those people have lost all support from health and social care. It would be wonderful – and fair – to see that support resumed for all who need it in 2022. I think of the many stroke survivors I know.

Finally, this blog will be moving to a new site later this year, More details in due course.

I wish you a happy and healthy 2022.

I’m not fully appreciated by them, you know
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Scottish Stroke Improvement Plan

My guest blogger this time is Roger, whose wife had a stroke several years ago. So unimpressed was he by the care ‘pathway’ for his wife that he has campaigned tirelessly for improvements to stroke care in Scotland. Like me, he is not unhappy with the individual professionals who provide that care, it is the system as a whole that he would like to see improved, particularly in comparison with what is available to stroke patients in the rest of the UK and in other Western countries. Each year he reads the Scottish Stroke Improvement Plan (SSIP) with meticulous care.

These are some of his thoughts on the latest report produced in July 2021 by the Scottish Government for the year 2020:

SSIP 2020

It is good to see an upbeat report of stroke care in Scotland during the last year.  A closer study of the report, and comparisons with similar reports from other countries reveals a little more.

Whilst there has been a small deterioration in  performance against the Scottish stroke standards – all health boards continue to fail to achieve the targets set by government.  These standards are below what is recommended in de facto stroke guidelines published by the British Association of Stroke Physicians (BASP), Royal College of Physicians (RCP), European Stroke Organisation (ESO) and World Stroke Organisations (WSO). De facto because Scotland’s national stroke guidelines were allowed to expire a few years ago and have not yet been replaced. 

The main focus on stroke performance is on 4 of the 10 Scottish stroke standards – the ‘stroke bundle’ – these are process indicators that occur in the first 24 hours only. Academic papers appear to show achievement of these 4 indicators is indicative of reduced mortality, but not recovery.  

So whilst these process indicators are important, 90% scanned within 12 hours is perhaps NOT indicative of stroke being a time critical medical emergency, and admission to a stroke unit says little about whether a stroke unit has special qualities, or whether people who survive a stroke remain in the stroke unit for the duration of their stay.

Deeper into the tableaux of the report we learn that over the last year some stroke patients also tested positive for covid, and as a result they were relocated to a covid ward, and did not receive stroke unit care.  Some specialist stroke nurses were redeployed away from the stroke unit – but it was not clear whether their stroke unit retained its designation with a lower staffing level.  One NHS Board reported its stroke unit was relocated to share a palliative ward  – perhaps not the best place for those who have survived a stroke and are hopefully on the path to recovery and rehabilitation. 

Whilst the report correctly points out the slight improvement in thrombolysis when viewed  from the perspective of door to needle times – it doesn’t mention that no health board achieved the stroke standard, i.e.50% should be thrombolysed within 30 minutes.  Perhaps more worryingly is the vast difference in thrombolysis rates across the country.  Whilst Aberdeen achieves close to 20% – recognized as a target in other countries, the average is 9.8%, down from 10.1% last year.  

The latter parts of the pathway for those who survive a stroke are now only hidden in the tableau appendix.  This appears to indicate that across the country rehabilitation is not provided to patient needs, is often generic (as opposed to stroke/neurological specific) and is variable across the country.  Although stroke units’ key competencies tend to focus on their multidisciplinary capabilities, it appears stroke rehabilitation goal setting is reported as NOT being multidisciplinary across the country.

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Scottish Stroke Improvement Plan

You can view the latest Scottish Stroke Improvement Plan by clicking here

No commentary from me on the subject as I am still recuperating. My advice to anyone at risk of falling: try to stay upright at all times and if you do fall try not to fracture your pelvis. Feedback on the SSIP welcome on this blog!

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Link to an article in the ‘Scottish Review’

Here is a link to my article about freedom and wellbeing in this week’s Scottish Review which draws on previous posts in this blog.

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Meet Ben

I am taking a break to recover fully from the injury described in recent posts . In the meantime Kevin Power from Cork -a lover of dogs, wine and words – describes his dog’s recent 5th birthday celebrations. Followers of this blog might care to note that Kevin is ‘Frank’ from a previous post, which you can read here. Archie never gets the treatment described in this post – on his birthday or any other day, but he does have something of Ben’s attitude.

Eric Sinclair

A Visit to the Power House

.. on the occasion of Ben’s birthday

First there was the tasteful arrangement of the plate: a little stack of chicken with a birthday number holding it all together.                                                       

Then there was the formal introduction of Ben to the food – or possibly vice versa. He evinced unfeigned interest.                                   

Then he hoovered up the food (but not the plastic birth number).   

This was followed by Ben’s wistful study of the plate to see if he had missed any little scrap.                                                                                                         

He then retired to the couch to digest and meditate on the good fortune that had permitted his so-called owners to live in his house. Having done that for a few minutes, he rather reluctantly succumbed to sleep. 

By and large, the humans in Ben’s house frequently have the feeling they wouldn’t mind changing places with him, for he is the only one in the house who is truly and unconditionally adored, instantly forgiven, and  all this without his being able to utter a single intelligible word. On the other hand, his repertoire of different barks, yowls, yaps, pleading eyes and paws and pathetic tail-wagging at mealtime (ours, not his) leave us in no doubt that he has mastered the art of portraying himself as a poor, starving orphan dog whose miserable existence can only be abated by frequent gifts of food and at least two decent walks per day, as well as the enjoyable daily and always vain attempt to catch the long-suffering Power House cat, the grumpy and world-weary Silas.

Kevin Power       

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New Worlds

I now know how explorers arriving in the New World must have felt. Since coming home from hospital, I have been treading a daily path from bedroom to kitchen to bedroom, with occasional embarrassing forays to the bathroom – now known and thoroughly boring territory – everywhere accompanied by my metallic friend, Cedric, as I have christened the NHS zimmer that I grasp in front of me.

This morning, Cedric and I finally plucked up courage, abandoned the kitchen and set sail for my study and its decent desktop computer, my wife and dog following at a respectful distance. For the last few weeks, I have been confined to using a very small and aging laptop in our kitchen. I’m using it again to type this blog, so apologies for any glitches. When I entered the study it felt like entering new unexplored territory, especially as my thoughtful wife had already placed an unfamiliar upright chair with padded cushion in front of my desk.

The reason I wanted to sit in front of my reliable desktop computer was in order to complete the final assessment of this year’s MA module (Part 1). In Open University parlance this is called the End of Module Assessment or EMA. Since I had invested quite a bit of time in it – fortunately before breaking my pelvis – I wanted to be sure that the computer I used to send it was fully capable of interacting with the University’s system at the other end.

I need not have worried. The operation was smooth, simple and effortless. I made a few final, final edits, said ‘Bugger it’ aloud, the EMA shot off into the ether and my fate was sealed with a few mouse clicks. I am now officially a student on holiday, waiting for the results, before deciding whether I should plunge into MA Module (Part 2) which starts in the autumn.

Given my damaged state there will be no end of term parties. I will be spending a lot of energy allowing my injury to heal, doing physio exercises and weaning myself off the various pills I’m currently swallowing each day. Also, I hope soon to be able to do all my own toileting without being supervised by Cedric and Johanna. With luck, we’ll get a visit from our new grandson, Finley, in June, which will transform him from the video baby we have watched steadily growing and thriving over the last few lockdown months into a flesh and blood little tot speeding on all fours about the house. Doubtless he’ll have no difficulty outpacing Cedric and his grandfather. He will also no doubt claim full bathroom rights, ahead of Cedric and me.

His arrival will offer a kinder, more enjoyable New World for all of us to explore.

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Angie’s story

My Father had a stroke in 2018.  Fortunately he got to hospital FAST which enabled him to get clot-busting treatment to reduce the disabling effects of his stroke – he was able to walk again.  This treatment, ‘thrombolysis’ is now being used widely in Scotland and across the world thanks to research undertaken by many including world-leading Scottish stroke researchers.

As a result of the pandemic, the Stroke Association has had to halve its budget for stroke research. This is a concern as I know that research saves lives and improves stroke recoveries. No-one wants to have a stroke or live with its effects.

And as stroke numbers continue to rise, the need for stroke research has never been more vital.

I have seen the devastation of stroke as well as the treatment breakthroughs, and believe stroke research can and will let people live the best life they can.

Angie MacLeod is a stroke survivor who works for the Stroke Association in Scotland, but is writing here in a personal capacity.

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Home again

‘Who’s at home with you?’ asks the ambulance man. We are bumping over the potholes on the outskirts of Aberdeen.

‘My wife and whippet.’ This gasped through the pain of another jolt.

‘Lovely dogs’

Through the pain, I think that the ‘Wife and Whippet’ could be the name of a Yorkshire pub. I picture a sign with a broad shouldered woman in an apron, her arms folded, and beside her a little lean, grey, miserable-looking whippet. ‘Ee, I’m off to the Wife and Whippet for a pint, luv.’ I check myself. This fantasising has to stop. Maybe it is a side effect of all those pain killers. Or maybe it’s a memory of all the fantasising you hear from other patients in hospital ‘I remember when…’ , ‘When I get home I’m going to….’ and saddest of all ‘I wish I hadn’t…’

It is always a strange feeling returning home after an absence. Some things are not quite as you remember them. And the ambulance men as they heft me through the front door see things with a stranger’s eyes. ‘Nice house, lovely garden.’ They are being polite, of course, but I suppose I’m seeing things afresh, too. That threshold at the bathroom, for example, the one I stumbled over a few days ago, when life was pain-free. That now seems deeper and more forbidding. Certainly if you’re negotiating it with a zimmer.

Some things are constants though; Johanna’s love, Archie’s tail-wagging welcome, the kindness of neighbours.

In order to give the thing a bit of humanity, I have christened my zimmer ‘Cedric’. Cedric belongs to the NHS of course, and I’ll be a happy boy when I can return him to his rightful owners. There must be thousands of Cedrics out on short or long-term loan throughout the land, and an army of their temporary owners wistfully remembering the days when they could roam free and didn’t require this metallic companion to accompany them about the place – slowly.

There I go, fantasising again. It must indeed be those painkillers. Which reminds me. It’s time to ask my ever faithful wife and whippet to bring some to me.

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Mind the threshold

This post comes to you from hospital.

In the brief second before you hit the ground – the hackneyed phrase is ‘your life flashes in front of you’ – so, yes, in the brief moment after my toe struck the threshold and my body thumped down on to the hard tiles of our bathroom floor, in that moment, my life would, I am sure, have flashed in front of me, had  I not been preoccupied with stretching out wildly for something much more interesting which might cancel the thump and its all too predictable consequences.

There will be many stroke survivors who understand that previous sentence horribly well. All the work you have put into recovery, those balance and strengthening exercises, the hours on the treadmill, the endless exhortations of physiotherapists to keep active, but to be sensible, all, all, put in jeopardy, by that one careless moment with your eyes fixed on the loo when you should have remembered that your left foot could misbehave at any time.

I lie on the ground, immediately realising that I have been a silly boy, and that being a silly boy has consequences, for myself and for my loved ones. Johanna is aghast; Archie is aghast; I am completely fed up. Kind neighbours help me to get to my feet. I stand, supported but shaky, but miraculously pain free. With help, I take a few steps. Bang. The worst pain I’ve ever felt, radiating from my hip and piercing its way into my torso and down my thigh. I hobble slowly to bed with help, fantasising that next morning I will waken and the whole event will be a fleeting, horrible dream.

It is not, of course. The next morning – a glorious sunny Deeside day – but not for me. For me, the telephone wrestle with NHS 24 and its tortuous journey through the ‘If you have… ‘ menu, the inevitable covid questions, the human who needs to know your symptoms, but doesn’t know where you are geographically, her colleague who asks the same questions, then passes the details to the local health board, who phone me back and tell me to dial 999  and call an ambulance, which I do, painfully exasperated that I should just have started with that option and why couldn’t they have done that for me, and, and…. But, of course, it’s much worse in India, and possibly worse in much of the world, though the pain of injury is identical wherever you are.

Sunday morning, therefore, spent in an ambulance. An hour’s journey and a 90-minute wait till we are admitted, the ambulance crew courteous throughout, though I’m sure they could be doing better things with their time than waiting stationary outside a hospital in the Aberdeen sunshine. The same courtesy when we are finally admitted despite all staff being occupied continuously and masked to the hilt. Bloods taken, blood pressure measured, canula inserted for liquid Paracetamol. Huh! This pain laughs at Paracetamol. More questions. Finally, an x-ray to be arranged. Another hour passes. The pain increases with time and immobility. X-ray completed and – great joy – they can find no fracture. It’s ‘soft tissue damage’. So how to get home? I can’t stand; I can’t walk; but I can sit – and wait. The staff are endlessly patient, so I should be too. Behind the scenes discussion. They struggle to find a bed, but by 9 p.m. I am in a ward. I am finally assessed by a doctor at 11 p.m. – 12 hours after I left home, more than 24 hours after I fell over, which, of course, is the point at which I should have called for help, but Saturday evening? You don’t like to call them out. Silly boy.

And now I sit here – Tuesday morning – listening to the chatter of nurses, the endless call of buzzers, the rings and beeps and musical notes of phones. The distant cries of ‘Squeeze your buttocks’, ‘you’ll need to stand up to get your bowels moving’ and ‘how do you transfer normally?’ It’s like returning to the stroke unit, except I have a single room and it’s more painful. It’s deja vu.

Today, Tuesday, clutching a zimmer frame, I  can at least shuffle to the toilet, and that’s progress. Now, there is a sentence I thought I’d never write in my life.

Update Wed pm – it’s a fractured pelvis, picked up on a scan today.

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