Stroke Care in Scotland

20180712_111913_sscaApologies for the length of this post.

As I do every year, I am providing a link on this blog to the annual Scottish stroke care audit – now called the Scottish Stroke Improvement Programme or SSIP as we shall learn to call it in the densely populated world of NHS acronyms.

Those followers of this blog with long memories will quickly realise that the cover (illustrated) has changed little from last year. The same smiling therapist and the same smiling patient are there. I wonder if the patient has progressed significantly since last year; I wonder if the therapist is now a member of a fully integrated multi-disciplinary team helping to provide continued rehabilitation for stroke survivors after they have left acute care. I wonder. I wonder. At least they are both still smiling. Only the date has changed – 2017 has moved inexorably on, as it does, to 2018.

So, has the content changed? Yes, the layout has changed, once again, but maybe not the underlying message, which is – acute stroke care: probably improving slowly, though not all good, and regressing in places; stroke rehabilitation – measured patchily and wildly different across the country.

There is an introduction from the Chief Medical Officer for Scotland, Dr Catherine Calderwood, a woman for whom I have the highest regard, mainly because she has articulated elsewhere a clear vision for health care. Dr Calderwood, as you would expect, uses the word “improvement” on a significant number of occasions throughout her introductory letter, whose message is largely directed towards clinicians and other healthcare professionals.

She quotes evidenced improvements:

“…….64% patients admitted to hospital with diagnosis of stroke receiving the appropriate elements for the bundle*, a 3% increase on last year.”

The target is 80%. You decide how significant an improvement that is, bearing in mind there are real people at the sharp end of this statistic. Would such a record in terms of punctuality be acceptable on our rail network, for example?

Below is a diagrammatic representation of the “bundle”:

20180712_132449_bundleShe mentions desirable improvements relating to outcomes and quality measurements for rehabilitation with which I, along with many stroke survivors, will readily identify. Rehabilitation is a key part of the “patient journey” (horrible phrase) after leaving acute care. Most patients want to resume some sort of quality of life post-stroke, many are realistically capable of achieving this and many younger survivors desire with all their hearts to do so:

“I encourage Health Boards to provide this information for continued improvements in personalised approach to rehabilitation going forward.”

This tortured sentence is challenging to understand and includes “going forward”, that ugly 21st century phrase suggesting an optimistic but vague future towards which we are all moving and in which everything will be brighter and better. That is not quite the picture of stroke rehabilitation that the SSIP paints. More of this later.

There is an important reference in her introduction to the fact that such improvements as are described in the report are thanks to a wide range of dedicated people:

“These improvements and developments only happen because of the dedication and passion of a large number of people, from frontline staff and carers to co-ordinators and analysts, sometimes in challenging circumstances.”

Having been privileged to see some of these people at work, I’d be tempted to replace the word “sometimes” with “almost always”.

Finally, Dr Calderwood references her own impressive past papers on Realistic Medicine:

“Reducing unwarranted variation is a priority in Realistic Medicine and I encourage you to use the quality audit data and the improvement programme to seek ways to make progress towards the standards of care.”

“Progress towards the standards of care” – an acknowledgement that we are not yet reaching the standards we aspire to. This failure is much evidenced in the report. And what about “unwarranted variation” – an Orwellian understatement and the hallmark of post-acute stroke care across Scotland. In simple human terms, if you leave hospital alive after a stroke, the care you will get is a healthcare lottery depending on where you happen to live.

I have spent a lot of this post describing Dr Calderwood’s introductory letter, for which I make no apology as it sums up some key points in the audit. Her underlying message, while trying not to discourage the troops, is that things must improve. They must.

As for the details of the data, I can do no better than quote a section of the response to the audit from the Director of the Stroke Association in Scotland:

We are pleased to note the improvements outlined in the audit, but some serious challenges remain.

Most notably, we are disappointed to see a significant number of hospitals not performing well against the standard set for delivering thrombolysis**. The earlier a clot is dissolved with thrombolysis which unblocks an artery and allows blood to flow through the brain, the less disability will be experienced.

We are also extremely concerned about the delivery of thrombectomy***.

In 2017, only 13 people received thrombectomy, and currently no centre in Scotland is providing it. The Audit identifies around 600 Scots per year as potentially benefiting from this life changing treatment. A national committee has been established to plan a Scottish thrombectomy service, but the process is slow and the consequence again is that many patients have been left with worse outcomes and significant disability.

We are calling alongside Chest, Heart and Stroke Scotland for the provision of thrombectomy in Scotland to be tackled as a priority by the Scottish Government, with national funding identified by the NHS. Those eligible stroke patients in Scotland deserve the same access to this life-changing treatment as in England.

For me, this is the heart of the matter – at the strategic centre of stroke care planning in Scotland, we need ambition and vision. We seem to lack this at the moment. All the statistics we have show that, in terms of care for stroke, Scotland is falling behind many countries in the developed world, let alone our nearest neighbours in England. Page 9 of the audit is particularly blunt in this regard:

In the developed world many areas have developed Comprehensive Stroke Centres (centres that deliver all aspects of stroke care, including stroke thrombectomy). Currently there are no Comprehensive Stroke Centres in Scotland.

thrombectomyStroke is a medical emergency demanding as much urgency as, say, a heart attack. The type of stroke must be quickly ascertained and the correct subsequent procedures followed. As the report admits, hundreds of people who survive a stroke could have had a better quality of life (note the verb tense – “could have had”). In other words they could have had less disability, could have had less demands on their families, could have had less need of expensive personal care and overall could have had a better quality of life if thrombolysis targets had been met and thrombectomy had been available, for those for whom it was suitable. They are the lost opportunities – the could have hads – a silent shambling army, with damaged brains and weakened bodies, but wistful thoughts of what might have been.

Nothing worthwhile is ever achieved easily, as any stroke survivor will tell you. I may be howling at the moon, but I urge Jeane Freeman, our new Cabinet Secretary for Health, not just to make stroke care a priority, but to make Scotland a world leader in stroke care. That would be a great legacy for her, but, more importantly, it is no less than stroke survivors and their families deserve.

______________________________________________________________________________________________

* bundle – a prescribed set of procedures which must take place as soon as possible following all stroke diagnoses

** thrombolysis – an injection which must be given within four hours to dissolve a blood clot in the brain

***thrombectomy – a skilled procedure to remove a blood clot mechanically from the brain. Can hugely improve outcomes for certain patients

 

 

 

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Heat, hot air or humour?

angerI don’t know whether this summer’s extended heatwave is beginning to get to me but I think I am in danger of turning into a grumpy old fart or GOF. Chorus from certain family members: “Turning into..?!” This morning my grumpiness was ignited more quickly than usual by social media commentary, working painfully in partnership with a bruising to my arm caused by falling over the dog recently. (The dog is OK, since you ask.)

But to my tale. This tweet from the Swedish Ambassador to the UK, Torbjörn Sohlström, appeared on Twitter today, and was retweeted by one of my followers (I may not tweet often, but I know the jargon). The ambassador’s message was:

Congratulations England. You had the stronger team today, and a great goalkeeper. When I have digested the result, I will support Three Lions.

I am not a regular Twitterer (that way madness lies), but, however cynical some may be about the fact that this tweet came from a professional diplomat,  I liked the sentiment and retweeted it with the comment:

Sums up the attitude that sport should be about 

If you are reading this at some point in the future, and not the torrid present, you may remember that yesterday (7 July 2018) England beat Sweden 2-0 in the quarter finals of the World Cup. You should also remember that I am a Scot writing a blog in the heart of Scotland. These days sending such bland but positive comments about anything English out into the Twittersphere is to invite abuse from the small but unrelenting band of Scottish nationalists out there who will respond with foaming-at-the mouth abuse in reply just as quickly as their sweaty fingers can scuttle over the keyboard.

Sure enough, an email arrived moments later alerting me to a friend’s comments on Facebook:

Hell would have to freeze over before I supported Englandshire in even a game of Tiddliwinks! I’m Scottish, never British!

Much worse will follow that factually incorrect statement, I am sure.

It is important not to take this stuff too seriously. In the past (by which I mean before the ascendancy of the current domineering Scottish political class) it was possible to indulge in good humoured banter about the relative merits of Scottish and English sport without anyone getting worked up into a steamy, boiling nationalistic frenzy. Nowadays it’s a minefield where unwary comments about the Scotland team, the England team or the UK constitution can destroy friendships and families. I say “UK constitution” but what I mean, of course, is “Scottish independence”. I have learned over time that the best way to defuse the aggressive nationalist mine is to beat their explosive into the ploughshare of humour, if at all possible.

gareth southgateAnyway, for what it’s worth my very amateur view of yesterday’s game is that both teams played well, but England defended particularly well, played as a mutually supportive team and played with obvious passion. Above all, there appeared to be no prima donnas on either side.

I suppose I am privileged in a way. The experience of waking up paralysed and alone in a Norwegian hotel, not knowing whether you are going to live or die, helps you to understand what are the important things in life. So, I know that, at the end of the day, none of the above matters – not the football, not the social media sniping, not the bitterness of some politicians, not Harry Kane’s hairstyle or even Gareth Southgate’s waistcoat. What matters – at a personal, national or international level – are family and friends, and sustaining and supporting good relationships between and among them.

That is something I boringly try to remember every time I find myself lurching towards the caricature of a GOF.

So what’s the issue with our Scottish politicians – an excess of heat? too much hot air? or not enough of a sense of humour?

You decide.

 

 

 

 

 

 

 

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Heat

Photo0071In the mid 1970s, I spent a year working as a lecturer at the Federal Advanced Teachers’ College in Okene, Nigeria. I say “working”, but in fact the College had not actually been built due to a significant dispute about land. Despite this, some students and a substantial complement of staff had been recruited from Nigeria, the UK and a number of other countries The college was temporarily housed in what had previously been an army barracks. I posted about this experience on this blog some time ago – see The Yellow Typewriter.

My abiding memory of that year is frustration – closely followed by heat, heat, heat and a fairly significant lack of water. The staff and students involved were also larger than life – but that is another story.

If you look at a map, you will discover Okene to be situated approximately 40 miles east of the confluence of the Niger and Benue rivers. It is in Kwara state, which due to its position in the centre of Nigeria “benefits” from a mix of the enervating humidity of the south and the intense heat of the north. The net effect of this is that day to day in the dry season (roughly October to March) there is hardly any rain but plenty of humidity, and even in the wet season  (roughly May to September) the rain is heavy but only intermittent and the air is intensely humid. Day after day in the dry season we would pray for rain and watch as promising thunderclouds built up or rolled past like black smoke over nearby hills. Only rarely did they cool things down with refreshing rain. I have never since taken for granted a supply of clean water.

While admittedly on a different scale, I have been reminded of those days in recent weeks, as here on Deeside, and specifically in Aboyne, we have had day after day of hot weather and our garden has become baked dry. In the afternoons, dramatic cumulus clouds have built up, promising storms, only to disperse and vanish. As I type this, there is not a cloud in the sky, our dog lies panting on his bed and it is too hot (at least for a fair-skinned Scot) to sit out for long in the sun.

It is all relative, of course. Last week, I was in Edinburgh for a Stroke Association meeting, where, thanks to the fine weather, I was sufficiently encouraged to walk from my budget hotel to the Stroke Association office. As followers of this blog will know from a previous post, this was always going to be something of a challenge. My legs had scarcely recovered by the next day, when we had a family reunion in Edinburgh with the visiting American kin, including Cambria. If that statement makes no particular sense to you, then I encourage you to read an earlier post on this blog, The Wicker Basket . For these kin from the USA, our Scottish “heat” was, of course, nothing special.

Try telling that to the spaced out, panting whippet lying next to me.

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A Life in the Day of Archie

I cannot decide whether or not I am a dog lover.

This is the sort of problem that I have the inclination to mull over now that I work only part-time.

 

 

Here I am with my dog, apparently relaxing at home. Note the dog’s stare. Note how joyful I look. Note the shrivelled leafless plant in its pot.

By the way, I say “apparently”, because I mean “apparently”. As regular readers of this blog know, we were acquired by a whippet some four years ago. Archie is the successor to our much loved literary whippet, Hamish, who died at the ripe old age of fourteen. Hamish was easy going and laid back. Archie is different.

A few weeks ago, a friend sent us a cartoon about a dog called Archie. For copyright reasons, I will not reproduce it here, but it is simple to describe: A man is sitting on his chair, rather like the human above. Out of his mouth comes a speech bubble saying:

Now what do you want, Archie? I’ve smothered you with love and attention and affection and adoring hugs and kisses and strokes and cuddles and kisses all morning.. “

At his feet his dog is thinking through a thought bubble:

“It wasn’t enough”

This sums up well the relationship we have with Archie.

In this picture you can see it all. The soulful eyes, the pleading expression, the silent request “More, more, more” – the “more” could refer to food, games, ball throwing, walks, love; in fact, any of the many exhausting pleasures enjoyed by a dog.

Not all readers of this blog are dog lovers. I understand that. For many years I myself resisted being owned by a dog and, as I say, I am still not sure if I fall into the category of dog lover. This is partly because our dog’s day consists of a constant psychological war of attrition with his humans. Whippets rarely bark, so he uses a combination of the unnerving whippet stare, his compulsion to live to a strict routine and his unending state of canine adolescence to ensure that he has full control over his human servants.

This is his typical day.

Early morning: At the same hour each day, Archie expects to hear the rattle of breakfast dropping into his bowl. After he has eaten it and while his humans are trying to enjoy their own breakfast, Archie wanders around aimlessly, anticipating his morning walk, occasionally staring hard and reproachfully at his humans. If the walk is delayed slightly, he drops balls on the floor and squeaks his toys repetitively. If the walk is delayed excessively, he whimpers pathetically and stands in the hallway staring dismally at the front door.

Morning: Archie has a walk with one of his humans. This is an opportunity for him to sniff things, meet other dogs, disobey commands, scavenge detritus from the forest floor or pick up bits of stale sandwich and other carelessly dropped human food. If the sun is shining on his return home, he expects to find a bed laid out for him in the garden. If this is not done, he cultivates a mournful expression, stares hard and accusingly at his humans, whimpers or squeaks his toys repetitively once more.

Mid-morning: Archie greets the postman who, long since defeated by the whippet stare, drops a biscuit into his gaping jaw.

Afternoon: Archie must have another walk with one or both of his humans (see “Early Morning” above). On his return home he trots straight to the kitchen and stares mournfully at his bowl until the crunchy rattle of dog food announces the arrival of his tea. After he has eaten his tea, Archie joins his humans and stares reproachfully at them to ensure that they do not spend too long drinking their tea. This behaviour, with its accompanying whines and whimpers, is an indicator that it is time for his biscuit, followed by some ball throwing and a chew.

Evening: Archie takes his ease in one of his beds, practises his various mournful expressions, mulls over his day and contemplates ways in which he can continue to keep his humans on a tight rein, while disobeying their every command. Look again at that first photograph. Look at Archie’s stare. You should now be able to understand that we are only “apparently” relaxing.

Am I a dog lover? You decide.

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Links

First link. As promised, a follow-up to my previous post.

Second link. I can recommend Lost and Found , a recently published book by Dr Jules Montague, a neurologist from London with whom I shared a discussion on Radio Scotland yesterday. For those of us with an interest in all things brain – at least from a lay perspective – this is a fascinating read. The book explores identity and its loss through a series of stories about individuals whose memories and identity have been changed by brain injury, stroke or dementia. 

As readers of this blog will know, this echoes my own question following stroke – are the pre-stroke Eric and the post-stroke Eric the same person? I still do not know the answer to that question, or even if it is the right question, but thought has been provoked and further questions posed in my own mind by reading this book and having that discussion yesterday.

I have heard of stroke patients being told “You will never walk again”. In my own case I was sent home from hospital in a wheel chair after four months and it was strongly hinted that this and the splint attached to my left leg would for ever more be features of my life. I will never forget being told by a stroke nurse, after leaving hospital that my ambition should be limited to a nearby stroke club where I could “play dominoes”. Similarly, I will always be grateful to the independent physiotherapist who refused to accept things as they were and worked with me to improve my balance and walking. I will never be a Strictly* star, but then my partners in my previous life were never particularly flattering about my efforts on the dance floor, and probably still remember the bruised toes.

Jules Montague’s book may pose more questions than it answers, though for me it answers some, simply by offering reassurance that I am not weird for wondering about these things. Underpinning all the stories in the book, and all the clinical causes behind some of them, is the profound mystery that is the brain and the fact that in 2018 we still do not fully understand the complex inter-relations between brain, mind, memory and identity, which is why, in my view, no stroke patient should ever be offered a statement beginning with the words “You will never….” Neuroplasticity and the infinite complexities of the brain may make many things possible.

Third link. Since I am determined to finish on an upbeat note, here is a link to the inspirational website of Debra Meyerson, a former Stanford University professor, who is co-writing a book called Identity Theft about her personal experience of stroke, post-stroke identity and recovery.

The final link is to that BBC Radio Scotland programme I mentioned at the beginning of this blog. The programme will be first broadcast at 13.30 on Monday 19 March. It is called Personal Best. Thereafter available on BBC i-player, it is hosted by Gillian Russell. You will hear Jules talking sense and me rambling.

*Strictly – For non-UK readers, Strictly Come Dancing is a BBC television programme in which celebrities pair up with professional dancers in a weekly extravaganza of exotic dress, sequins and general brightly-coloured musical jollity.

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Open Space – 2

Cogito ergo sum.

Je pense, donc je suis.

Ich denke, also bin ich.

I think, therefore I am.

In whatever language you express it, you have to admit that M. Descartes had a point. If you are capable of thought, you must exist. The problem for some stroke survivors is the pronoun. Who is the “you”? Who is the “I” in the sum, the Je suis, the Ich bin, the I am? Am I the same I that I was pre-stroke? I realise that I have toggled between the first and second person, as well as burbling on, but you get my drift. For some of us, there are doubts there.

These are deep thoughts for a cold March morning, but they were prompted  – or rather, reignited – by a phone call I had last Friday afternoon, as I was contemplating the snowy wastes outside my window. The call was from a radio producer who is making a programme about individuals’ sense of identity after stroke. The programme is to be based on a book by an author from London. He is sending me a copy, so in due course I will publish here full details of book and radio programme.

Immediately after my stroke, I agonised over this matter of identity. Well, that is not quite true. I agonised over a lot of things – how much physical recovery I would get was uppermost in my mind, along with what the future would hold. But I also wondered frequently if I was the same person; the same (as I would have it) strong, kind, sensitive, friendly, intellectually curious creature that I had always been. I quote from my book:

Jo arrived at the hospital on the Monday morning. My first concern was to reassure her that, though physically I might be largely inert, I was still in full possession of my faculties.

“I’m still the same Eric,” I reassured her anxiously.

“Oh, that’s disappointing,” she said

I think she was joking, but these thoughts never really went away in the first few months. At a later stage in my recovery, while in hospital in Aberdeen, I listed in my mind all the accumulated side effects of stroke I was experiencing – slurred speech, chaotic emotions, exhaustion – and wondered:

Underlying all of these side effects, a deeper nagging question – was I really the same Eric, as I had so confidently claimed to be when Jo first came to see me in Norway?

Am I the same lovable creature today that I was yesterday?

I know from talking to others who have survived a stroke that I am not alone in having had these doubts. Perhaps it is to be expected that stroke – which is a kind of brain injury – should bring about changes not just to the more obvious legs, arms, speech and emotions but to the basic persona as well. The brain, as we are now discovering, is infinitely complex.

I remember while lying in hospital that I wanted to open up this question to someone other than friends and family, someone who might have the expertise or insight to answer it. Despite my appealing and vibrant personality, no nurse or medical professional lingered long enough beside my bed to open up such a discussion. Physical needs – medication, toileting, lunch – took precedence, though not necessarily in that order.

In Scotland, the introduction to the SIGN guideline for stroke reads:

This guideline provides recommendations based on current evidence for best practice in the management of stroke rehabilitation. The aim of this national guideline is to assist individual clinicians, primary care teams, hospital departments, and hospitals to optimise their management of stroke patients with an emphasis on the first 12 months after stroke

You will struggle to find anywhere in the dry prose of the guideline a recommendation that there should be “open space” for stroke patients or their carers to ask the sort of questions that I have tried to frame in the ramblings above. For psychological good health, time for patients and carers to open up about their fears needs to be in there somewhere in the first 12 months. Such open space may well be offered to some, but unless it is explicitly stated as standard practice it simply won’t be offered everywhere.

You will cry “Resources!” but the wider issue is this – if we want to maximise recovery from stroke and other long term conditions, physical and psychological therapies must be given similar status during those first 12 months, with all the consequences for time and staffing that that statement implies.

 

 

 

 

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Open Space – 1

Edinburgh, March 2017

Tuesday

“Are you a night shift worker?” This is the greeting from the gentleman checking me in to my budget hotel a short walk from Leith docks.

I look at him and listen to the girly giggles coming from his two colleagues behind the desk. Standard greetings in such places are usually a bit different from that: “Did you have a good journey?” or “Is this a trip for business or pleasure?” But, “night shift worker”? Briefly, I wonder if he is planning to rent out my room overnight to a second guest if I answer in the affirmative. Then I can see by their red faces and suppressed giggles that something else, something a bit darker, may have crossed his colleagues’ minds. Fortunately he explains: “We are planning to fit a new carpet in that room, so I’d move you to a different room if you wanted to sleep during the day.”

Relieved by this explanation and released from the surreal conversation, I wheel my small bag towards the lift. If you’ve had man flu  and you’re returning to the big world for the first time in more than a month, everything can take on a slightly surreal air. I had certainly not expected to find myself looking forward to a new carpet. But then I didn’t expect to have a stroke on 18 July 2004, to find Britain had left the EU, to see Donald Trump as US President or to enter the new year of 2017 by spending a month fighting man flu. Man flu? Did I mention the man flu before?

I am in Edinburgh to attend a couple of meetings at the Stroke Association office in Leith. It is my firm intention as a man flu and stroke survivor, to improve my recovery by walking the mile or so next morning from my budget hotel to the office. To that end, I have taken with me my walking poles. Big cities, big crowds, big traffic are important considerations  if you’re a stroke survivor with questionable balance and stamina. The poles at least offer some stability and reassurance, even if with a leather rucksack strapped to your back, you look as though you should be walking the hills rather than a city street. An aside here for Edinburgh City Council – it is actually easier for me to tramp the paths of Deeside, than to walk the streets of your town because of the uneven pavements and the short time given at green man crossings.

Wednesday

That walk is not to be. A brief foray outside the hotel’s front door next morning reveals a fierce icy blast and occasional rain – possibly the opening salvos of the predicted Storm Doris. My re-entry to the world of rough pavements will have to wait for kinder conditions and a less wimpish me.

This naming of storms is weird. To me, “Doris” suggests a homely lass, with perhaps a quiet self-effacing husband and a small dog. That may be a sexist, husband-ist or dog-ist remark. But Doris does not suggest a fearsome destructive gale or the red, amber and yellow warnings beloved of our forecasters.

Deeside, March 2018

Saturday

Plus ça change, ….

Tuesday and Wednesday’s draft posts above from 2017, almost exactly one year ago, somehow never made it on to the public face of this blog. After typing the word “forecasters”, the will to continue seems to have deserted me. I am sure this had something to do with the repetitive tedium of weather-related news. In March 2018 we’ve had The Beast from the East and Storm Emma. The Emmas I know do not remind me of storms. But the Beast from the East does suggest Vladimir Putin in one of his bad moods.

On Deeside, the Beast has consisted of a series of heavy snow showers interspersed with brilliant sunshine. Storm Emma didn’t reach us. The net effect has been a few inches of snow and this view from my study window:

And this is what a shivering whippet looks like when contemplating a freezing walk:

At least this weather allows time for open space, to think and to blog. Beware, and note the “1” in the title above!

 

 

 

 

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Number geeks

Some stroke survivors become “stroke survivor number geeks”. In this age of acronyms I shall call them SSNGs . I admit to being one of them . Not any old numbers, mind you. Stroke numbers. For those of us SSNGs living in Scotland specific stroke numbers of interest are the numbers describing shortages of stroke care professionals in our hospitals and communities and the numbers produced by the annual Scottish Stroke Care Audit (SSCA).

We live in an open democracy, so a friend of mine recently posed the following question of the  SSCA team:

Could I ask you to clarify whether the SSCA report covers all patients with all types of strokes?

Simple question – strange answer.

Here is part of the reply:

1. Where bleeding is primarily subarachnoid (such as from an aneurysm or less commonly from an AVM*) we do not include them since they are managed by neurosurgeons primarily, and have very different clinical presentations from the remainder of stroke. SAH** is included in the WHO definition of stroke but we have not included them in SSCA because the standards we set nationally do not relate to SAH

2. We do not include childhood stroke, i.e. those under 16, because our stroke services in general will not deal with them

My response to 1.

  • When is a stroke not a stroke? When it’s a bleed into the brain caused by an aneurysm

And in response to 2.

  • When is a stroke not a stroke? When it’s a childhood stroke

To a lay person, these are strange replies on several levels.

Firstly, it sounds horribly as though patients are being fitted uncomfortably into a system rather than the system and its statisticians responding to the ways in which patients actually present.

Secondly, if I am a 15 year old unfortunate enough to have a stroke, I want to be sure that “stroke services in general” will actually deal with me and that all available expertise will be pointed towards me. This may well happen in practice, but it is not represented in what are supposed to be comprehensive stroke care data.

Thirdly, if the WHO definition of stroke includes SAH, why does Scotland, too, not include this condition within the definition of “stroke”? After all, while the initial clinical presentation may be different, the outcomes in terms of death, disability and potential recovery are the same.

Finally, I have enormous respect for the professionals involved in stroke care across Scotland, but if these patients are not included in the SSCA, then how is performance in the treatment of these patients measured? (That is a genuine question which I invite any knowledgeable professional to answer at the end of this blog post)

In my view, these exceptions in the SSCA statistics are part of a larger problem. The NHS is fragmented across the UK with each of the four nations measuring stroke care in a slightly different way. Thus it is impossible to compare precisely stroke care in England with stroke care in Scotland. Most UK citizens would like to know that if they are unlucky enough to have a stroke in London, the quality of treatment is likely to be the same in Llandudno, Lowestoft or Lanark and that common standards of treatment will apply. As taxpayers, we ought at the very least to have the means to compare readily what quality of care we can expect across the country. In other words it would be tremendously helpful to have a common dataset for measuring stroke care across the UK, even if it only applies to certain key aspects of the three basic stages of care – the “patient journey” as the professionals are wont to call it – initial acute care, stroke unit standards and rehabilitation. This does not preclude having minor additions to what is measured beyond the basics in different parts of the UK.

The NHS in Scotland has an excellent record in terms of good quality data collection and could be a leading player in achieving common agreed measurements of stroke care across the UK. However, given the Scottish Government’s current obsession with making all things Scottish as different as possible from other parts of the UK, this seems unlikely to happen soon. I speak not as a member of any particular political party (I am not a member of any), but as a simple SSNG.

Then again, it is important to remember that behind these statistics are thousands of human stories – even we SSNGs are human, as I understand it.

*arteriovenous malformation      **subarachnoid haemorrhage

 

 

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My year of falling over

August already. Can 2017 be so far advanced?

The last time I posted here was in early January. “For this relief, much thanks”, you may say, echoing Francisco in Hamlet. That would be an appropriate response, since the last time I wrote on this blog I was suffering from man flu, and Francisco’s next remark in the play is ” ’tis bitter cold, and I am sick at heart.” Shortly afterwards, Horatio enters, the ghost of Hamlet’s father appears, Horatio subsequently tells Hamlet about their chilling (and chilly) experience and the prince gets himself into a terrible tizz about it all. I didn’t get my A pass in Higher English for nothing, you know.

Fortunately the ghost of my man flu has appeared, stalked the frozen castle ramparts and departed. My temperature has dropped. Meanwhile, as in Elsinore, outside temperatures have risen somewhat, though not excessively, this being Deeside and the north-east of Scotland.

Until this year I have been a fortunate stroke survivor – if such a combination of words can ever be acceptable – since very rarely have I fallen over. In hospital, immediately following the stroke, I did so twice: once in a Norwegian hospital and once in a Scottish hospital. For the response in Norway, see page 31 of Man, Dog, Stroke. In Scotland the response of the nursing staff was that my dropping like a stone to the floor of the ward resulted in more paperwork for them and so I must not do it again (I think they were joking). As it was, only my pride was injured as I thrashed about trying to raise myself to a vertical position, much to the amusement of fellow patients. Stressed nurses and bored stroke patients can be a merciless combination.

This year, however, I have fallen several times – twice in February, once in March and once, more seriously, in the middle of June. In March we were returning through the dunes from a walk along the West Sands at St Andrews when I tripped over my feet and fell headlong on to compacted sand and marram grass. On that occasion I was helped to my feet by two passing strangers who, it transpired, lived not far from us in Aberdeenshire. I never got their names. So, if you are one of those strangers and happen to be reading this, you will no doubt remember the idiot with two walking poles, a concerned wife and a miserable-looking but unconcerned whippet fooling about in the dunes at St Andrews last March. I repeat my grateful thanks for your assistance.

June’s catastrophe was more serious.

A discovery I made post-stroke is that singing strengthens your voice. There is science to prove this apparently and there is at least one choir of stroke survivors that I am aware of. Pre-stroke I was a member of a community choir on Deeside.  Post-stroke I joined the small choir in a local church, and, once I’d mastered the art of one-handed music holding, I enjoyed singing, the social aspect of it and the resultant strengthening of my voice from intermittent squeak, if not to basso profundo, then at least to a reasonably manly sort of bass sound.

So it was with some frustration that, one Sunday morning in June, I tripped over a step in the church and thumped to the stone floor in front of an astonished congregation. At the time I felt little more than embarrassment but as the hours passed I began to realise that there was a major problem with my right shoulder – the one on which much of my mobility depends. Our excellent local hospital eventually x-rayed the shoulder, assured me no bones were cracked or broken and a torn rotator cuff was diagnosed. Believe me, this is not a group of shoulder muscles you want to damage, particularly if you are a left-sided stroke survivor largely dependent on the right side of your body for everyday activities. First there is the excruciating pain; then there is the feeling of clumsiness and stiffness as you try to avoid doing anything at all that involves the right shoulder; and, as so often for stroke survivors, the feeling of weak helplessness.

As I type this, the pain continues, as does my full commitment to the physiotherapy exercises I’ve been given, which I have been assured will eventually fix it. I’m determined to return to what passes for normal, if only to be able to throw balls for our adolescent whippet. At least the pain has subsided to the extent that I am now able to drive short distances again.

Of course, national and world events put all of this personal misery into perspective and if you are immobilised with shoulder pain you have the time to mull over some of them. Over the last few months we have had terror and violence, continuing strife in Syria, Yemen and elsewhere and we’ve had the consequences of that general election. Here in Scotland, that election has at least had the effect of muting the siren calls of the most rabid nationalists. Meanwhile, in July, for those interested in stroke care in Scotland, the Scottish Government published the Scottish Annual Stroke Care Audit.

A smiling physiotherapist treats a smiling stroke patient. In the NHS everyone always smiles.

Once again this document – available on-line only – makes depressing reading. Some modest improvements in acute care are noted, but many health targets are missed and there is only a fluttering attempt to measure the level of good quality long-term rehabilitation for stroke survivors across Scotland – often patchy and frequently non-existent, despite the best efforts of health and social care professionals and charities.

We seem to have reached a point in Scotland where we are able to save lives in hospital only to return stroke patients into the community to a much poorer quality of life than should surely be attainable. Reading the document, you are left with the feeling that the system is under-funded and inadequately staffed. It is.

Stroke patients who leave hospital alive can only obtain decent long-term rehabilitation if they pay for it. One day, our politicians will be brave enough to state this fact in print along with the statistics.

This year the section of the audit report which allows Health Boards to comment on their local situation has been omitted. This is a pity because it was the only part of the document amidst the reams of statistics that allowed the lay reader to understand clearly the pressures under which stroke professionals work. Boards would use the space to comment on such things as inadequate staffing levels, poor training and shortages of specialist accommodation. Cynical old me says this section may have been omitted for political reasons.

But that’s probably the pain in my shoulder talking.

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Man flu and other delights

man-fluMerry Christmas 2016 and welcome to 2017 – now here is some man flu.

Yes, I know, it is not ebola or zika virus, but the cold/man flu/infection/whatever it is that has kept me housebound for the last week has ceased to be a joke (my response to it is a joke to some members of my family). I now boast a magnificent collection of suckable sweets, powders and cold “remedies” –  sufficient to stock a small pharmacy. I  also have a cough to rival the rough hoast of a fifty-a-day full strength Capstan smoker. No-one visits. I have no social life. I am a pariah.

I have just been presented with a steaming mug of the full-strength version of a well-known cold cure brand, the bouquet from which suggests it has the ability to clear the most stubborn of blocked lavatories. Will it finally clear my tubes, though, and remove the thrumming headache and streaming eyes? “It’ll be doing you good” says my wife as she nimbly sidesteps through the door to take the dog for a walk by the river and to breathe virus-free air.

Telephone and email sympathy is offered: “There’s a lot of it about.” “That virus has been through my whole family” “It just has to take its course”. I am not alone.

Still, incarceration has some benefits. I have spent some time digitising some very old family photos. To raise my spirits, I am trying to read The Girl on the Train and if that fails, the new Robert Harris novel is waiting in the wings. I am not sure if these are ideal choices in my present circumstances. I also have the print and digital news to keep me entertained. From a standing start (“What’s that number thing in the paper called?”) I have learned, with only mild swearing and some help from a much more logical wife, how to do mild sudoku very slowly.

Apart from the ongoing tragedies across the world, two of today’s news items affect my blood pressure, and not in a good way.

  1. The Times reports that Anne Wafula Strike, a paralympic athlete, was forced to urinate in her clothes on a three hour train journey because there was no working disabled toilet on the train. Apparently she sobbed for hours after she returned home.

I can well believe it. Train journeys can be a nightmare for anyone with even mild mobility problems. I have blogged about this in the past and still vividly remember being shouted at by a woman on a swaying overcrowded train because I accidentally tripped on her foot trying to access the toilet – there were no empty seats and she and countless others were seated Corbyn-like on the floor all around the toilet entrance.

2.Some of those who cannot get over the fact that they lost the 2014 Scottish independence referendum, have been fund-raising to put up posters complaining that the BBC is mis-reporting Scotland. Alex Salmond, their former leader, apparently refers to the BBC as the British Brainwashing Corporation. Infantile, or what? I’d be delighted if they could send me evidence of this brainwashing or mis-reporting – I will publicise it for free on this blog.

Still, it’s the new year. I have drained my mug of steaming hot lavatory cleaner to the last drop, so things can only get better. This time last year there were floods.

Happy new year to all readers and followers of this blog!

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