Eric Sinclair – optimist, author, Stroke Association volunteer, occasional chorister – all views my own but fully endorsed by the whippet. "Being challenged in life is inevitable, being defeated is optional"
Just the sort of day when normally I would want to take Archie (hop, skip) and myself (trudge, slip) for a walk, but 2023 is going to be the year when I do NOT fall over, with all the complications that fellow stroke survivors will know only too well. So, life inside it is.
An update to my last post, where the word ‘thrombectomy’ is explained. The Scottish government in its wisdom has now decided to reverse some of the cuts it had made to the budget for thrombectomy in Scotland. Whether this is in response to complaints from health professionals and others, in response to opposition politicians or in a sudden rare outbreak of common sense and compassion, who knows. But welcome news nonetheless. However, it still leaves Scotland with a part-time thrombectomy service, a postcode lottery for anyone suffering a stroke here and a service below the standard available elsewhere in the UK and much of the western world. But let’s be grateful for this modest concession and regard it as a moderately hopeful start to the new year.
With that, I leave you with a further picture of the view from my window … and beside me a warm sleeping whippet.
Today 166 stroke professionals have written to the Scottish Health Secretary, Humza Yousaf, deploring his decision to cut the funding for the acute stroke procedure known as ‘thrombectomy’. This is the clinical term for the mechanical removal of a blood clot from the brain of someone who is suffering a stroke. It is a highly skilled procedure requiring a team of trained professionals and must be carried out as soon as possible after someone shows signs of having had a stroke. It can have dramatic results in suitable patients. It is widely available across western Europe and America, as well as the rest of the UK. Currently it is available on a part-time basis in only three centres in Scotland – so if you live or plan to visit here, choose carefully the time and place you intend to have your stroke.
That last sentence is ridiculous, of course, but not as ridiculous as the decision to cut the funding for thrombectomy. If you want to cause hundreds of your fellow Scots to have unnecessary suffering, permanent disability and misery, and cause huge costs for health and social care services then an easy way to do it is to make thrombectomy unavailable to anyone who is unfortunate enough to have a stroke.
Don’t take my word for it; here is a copy of the letter sent to Mr Yousaf by those 166 clinicians and two charities:
2nd December 2022
Dear Cabinet Secretary for Health and Social Care,
As Scotland’s stroke professionals, we are writing to express our opposition to the Scottish Government’s proposed funding cut and recruitment freeze to the national thrombectomy programme, and to ask you to reconsider those plans.
As part of the Emergency Budget Review, around £7 million (50% of funding) was taken from this year’s thrombectomy budget. Cutting funding for thrombectomy and the recruitment freeze will have a significantly detrimental effect on the progress made to date in establishing pilot services which have already delivered more than 150 life-changing procedures for stroke survivors in Scotland.
Thrombectomy is an extraordinarily effective medical treatment. Research shows it is one of the most effective treatments for any medical or surgical condition in terms of the number of people needed to treat to bring benefit. Around one in every three people who receive a thrombectomy will be less disabled after their stroke as a result. Around one in five will be able to function completely independently afterwards. Thrombectomy gives people a better chance of walking again, talking again, and living independently.
Apart from the life changing benefits to the patient and their families, the large savings on hospital length of stay, community rehabilitation and lifelong social care directly address many of our current health and social care pressures. Thrombectomy is an excellent example of preventative spend. Robust evaluation shows that thrombectomy has the potential to save the health and social care system up to £47,000 per patient in the first five years. To slash investment in this well-evidenced, cost-effective procedure would in our view be a mistake.
The other three UK nations all have well established stroke thrombectomy services – Scotland already lags well behind. If developments do not continue as planned there will be ongoing inequity of access within Scotland to this life saving or life changing treatment, dependent on when or where you are unlucky enough to have a stroke: for example, Scots who live in North Lanarkshire, North Ayrshire and the East End of Glasgow will have no service whatsoever. A decision to worsen existing health inequalities is very unfair on the people who live in these areas.
Thrombectomy spending accounts for less than 0.1 per cent of the total health budget. We ask you to look again at the relatively small financial savings being made here as a proportion of the overall national health spend, and weigh that against the impact it will have on delivery of the thrombectomy programme, as well as on the truly distressing wider signals it sends to the Scottish population about their government’s commitment to improving stroke care.
As clinicians and practitioners, we always endeavour to provide the best care possible for our patients. We realise there are major funding challenges facing the NHS and social care, and a resulting need for difficult and pragmatic decisionmaking. While we will always attempt to provide the best possible care with the resources available, we know that restricting thrombectomy funding will lead to significantly poorer outcomes for our patients.
We urge you to reconsider the decision, and re-commit the Scottish Government to the delivery as soon as possible of a sustainable, safe, equitable, 24/7 stroke thrombectomy service for the people of Scotland.
The letter is then signed by 166 stroke clinicians working in Scotland and the two charities Stroke Association and Chest, Heart and Stroke Scotland.
So, Humza, while you are contemplating the £2 billion underspend the Scottish Government Auditor General says you currently have from 2021/22, why not show some transparency (also requested by the AG) by re-instating the budget for rolling out a thrombectomy service across Scotland. (0.1 per cent of the total health budget). After all, you’re responsible for this madness, and you’re usually keen to show we are as good as the rest of the world.
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
No more farting
No more scrounging for biscuits
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.
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 isthe systemas 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 Governmentfor the year 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.
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!
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.
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.
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.
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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