An aye for an eye…

Cat on a hot new roof: Pixel checks it over!

Writers remember everything… especially the hurts. Strip a writer to the buff, point to the scars, and he’ll tell you the story of each small one. From the big ones you get novels. A little talent is a nice thing to have if you want to be a writer, but the only real requirement is the ability to remember the story of every scar.
    Art consists of the persistence of memory.
— Stephen King: Misery

I have written on here before about the NHS at its worst (for me). But on Saturday I experienced it at its very best. Before I tell you how, I need to take a few steps back, and tell you the why.

Last Tuesday, after six weeks of seemingly continuous rain, my kitchen and bathroom roof was replaced (very loudly); and I finally removed the bucket and pan from under the spot where all the water had collected in the roof void and made its way through. Then, when the scaffolding was dismantled on Wednesday afternoon, I went and sat outside with my cat Pixel amongst the cement dust and general mess, and reflected on how we’d muddled our way through from the morning I slept in; Storm Floris found the weaknesses in the old roof; and I woke up to an inch of water soaked into the kitchen floormats and collected in poor Pixel’s food-bowls, as well as splashed up the walls and kitchen door (where the weak spot was). It could have been worse, I suppose. But it felt like a disaster… — an expensive disaster.

Would in thy palm dissolve…

Conditionality
Provoked by yet another hospital visit — this one more promising than most… — and therefore composed over a watchful, thoughtful night.

…but be sure
I will from henceforth rather be myself,
Mighty and to be fear’d, than my condition,
Which hath been smooth as oil, soft as young down…
— Shakespeare: Henry IV, Part I

Why are our bodies soft, and weak, and smooth,
Unapt to toil and trouble in the world,
But that our soft conditions, and our hearts,
Should well agree with our external parts?
— Shakespeare: The Taming of the Shrew

smooth is a soft word; soft is not — it speaks
of a lover’s leaving: the latch that drops,
catches and calls; a lapse of the caution
that pulled the stillness of the prior world closed

closed is not ever close — bodies touching
may hold unknowable souls, or stories
consciously untold; can cling to silence
fashioned from flints of fear, pointed with pain

pain is anything and everything we
wish it were not — the short sharpness of a
cat’s playful claw; the ceaseless cremation —
deep within its eye — of stars undying

undying is not living, nor is it
the phoenix’ echoed resurrection — mere
hope-filled fancy for a latch that never
lifts nor falls; for a blade pared soft and smooth

Listen to the waves against the rocks…

It was the top of page 212 that unlocked the floodgates I had been blinking back all day:

For people who are in continual pain, the relationship with bodily risk is different. Pain is not a healthful by-product of healthy exertion or impressive effort: it is a constant companion. You want to limit your time with pain, not encourage it.
    For people who live with fatigue, the relationship with effort is different. Exhaustion is not a healthful by-product of healthy exertion or impressive effort: it is a constant companion. You want to preserve yourself from fatigue, not encourage it.
— Polly Atkin: Some of Us Just Fall

Anyone — and it probably is a one (so thank you, dear reader!) — who has followed this blog over the last eleven years or so (even when it has vanished into the haze of forgetfulness, or weirdly veered down the path less travelled by) will understand my cathartic tears: disability, along with (for me) its constituents pain, fatigue (sans sleep), and an overwhelming desire to walk (when I shouldn’t), are the chief characters found amongst the subplots cunningly pushed through these pages, as they are throughout my life. Since three other motorists did their best to render me immobile (or worse), and (much later) my heart suddenly stopped (ostensibly because of a drug I was taking to alleviate one of the main aspects of the disability caused by those earlier collisions, but actually caused by a congenital genetic mutation), disability and illness have become intertwined both in my life and in my mind (although possibly in different ways). They have also become my necessary guides (although possibly not always in a good way).

Can I take your postcode, please…?

Exactly ten thousand days ago today, driving home on a gently warm afternoon in the middle of September 1996, I was on the receiving end of the first of three serious road traffic collisions (RTCs) that wrote-off the succession of vehicles I was driving and increasingly damaged my neck: leading, ten years later – despite hundreds of physiotherapy sessions, and many, various minor operations – to major, and extended, surgery: when my cervical spine was stabilized from the front with four surprisingly lengthy screws and a sizable titanium plate. (My neck was so badly deformed – like the poor cars before it – that a bespoke mechanical replacement for one of my cervical disks had to be forgone; and the two vertebrae surrounding it were instead fused together.) I have not seen my shoulders since.

Lockdown diary #3: You are never parted in the beating of your heart…

As is so often the case, the body was in virtually flawless condition: the only clue as to its demise the dull eye (ordinarily… extra-ordinarily brilliant yet pale with cheeky inquisitiveness and intelligence) hanging loosely from its socket – seemingly beseeching me for help that could never come. Even two days later – when no-one, no-thing, had been to claim it: neither fox nor magpie; buzzard nor kite – it remained impeccably embalmed in its lignite sheen: and so I carefully gathered it from the verge – the weight in my hand remarkable for its lightness (as if the departure of its life-spark or soul had rendered it hollow) – and laid it carefully in its temporary resting place. Normally, we would have buried it in a quiet spot in the garden. But times are not normal: so I swaddled it, instead – muttering a few thoughts of ritual respect and regret… – in a large workaday carrier bag; and then placed it, heartbreakingly, in our green council compost bin.

Lockdown diary #2: Spare your arithmetic, never count the turns…

And then – suddenly; startlingly; steadfastly… – it is Sunday. The chilling, seemingly fixed north-north-easterly – ferrying in yet one more ferocious (but not this time vacuous) official foreboding of its own, in the form of a frigid wind-speed alert… – seemingly purifying the pavement of all pedestrians. All the silver/grey/black cars, however, immune to its volitions, are stationary: as they still – thankfully – remain locked to their owners’ homes – many warmed with the rainbows and soft toys that demonstrate love, hope, and temporary happiness. [Andrà tutto bene. “All will be fine.” (We wish. Fervently.)]

The cooling breeze – the cooling day – it brings is concretely cleaner; and, as I circumambulate the churchyard (the building at its heart now closed even to such prayer), I launch my atheist’s supplication quietly upstream: craving continuing clarity, and everlasting expanded green spaces to breathe within. At the exact instant I traverse the main, southern entrance, the air resonates with the midday chimes. I feel blessed. Perhaps this presages something. But… – and I hesitate…. Benevolent… or… the other kind…?

I choose the former; and ramble onwards.

Never interrupt me when I’m eating a banana…

Due to unforeseen (aren’t they always?) medical circumstances, I will be ‘out of action’ for quite some time. What this means for this blog is an even greater paucity of posts… – sorry… – although there are still many things I wish to write about (just very, very slowly) in my (undesired but necessary) dotage(?!) – including some thrilling new ballet music (Hi, Thomas!); some incredibly skilful and moving cello playing (Hi, Matthew!); why Mole has been so mute; and what it means to suddenly discover that, instead of a physical heart (my emotional one remains perfectly intact, thank you very much!), I have been carrying around one of those ticking time‑bombs that James Bond always manages to defuse with just one second to go. Fortunately – aided and abetted by The Great (née Good) Lady Bard… – some of the most outstanding (expert, friendly, deeply caring and knowledgeable) medics I have ever encountered beat 007 to the chase, this time: and I am therefore a tiny bit bloody, but otherwise unbowed (as the incomparable William Ernest Henley so memorably wrote):

Beyond this place of wrath and tears
    Looms but the Horror of the shade,
And yet the menace of the years
    Finds, and shall find, me unafraid.

It matters not how strait the gate,
    How charged with punishments the scroll,
I am the master of my fate:
    I am the captain of my soul.

Feel free, firstly, of course, to email me, should the spirit (preferably a wee dram or two of Laphroaig) move you… – although please excuse, in advance, my undoubtedly exceptionally tardy response times… – and please feel free, secondly, of course (should this (less-than-subliminal) suggestion move you to such generosity!), to buy me the occasional (online) coffee (especially as, for me, the Laphroaig is now heartbreakingly (oops) out-of-bounds)!

Finally… thank you for your ongoing support; and in advance for your patience and understanding.

Gentlemen, we can rebuild him. We have the technology. We have the capability to make the world’s first bionic brainiac. The Bard of Tysoe will be that clever-clogs. Better than he was before. Better… stronger… but – unfortunately – no more fathomable.

You don’t know what you’ve got ’til it’s gone…

My momma always said, “Life was like a box of chocolates. You never know what you’re gonna get.”

It seems Mrs Gump was right. The Good Lady Bard brought home such “a box of chocolates” just over three weeks ago – a generous thank-you gift… – and one of its many yummy constituents took me completely by surprise: giving me an intense allergic reaction. Two antihistamines, and two hours – plus many puffs of my blue Salbutamol inhaler – later, and I was on the way to recovery. It could have been much worse, though. The upshot being that I now take a pair of prescribed EpiPens with me – absolutely everywhere I go.

It looks like one – or some combination – of the many proteins in cow’s milk is to blame (eleven various forms of “milk”, from “Dried Whole Milk” to “Dried Whey”, were listed amongst the fifty-eight(!) ingredients): meaning that foodstuffs I have consumed all my life (and once helped to produce) are now permanently verboten. (Because of the 92% probability of cross‑reactivity, anything containing sheep’s and goat’s milk is also off the table. Mare’s – or even camel’s – milk will, in all likelihood, be just fine, though!)

Tin or aluminium; not titanium…

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way – in short, the period was so far like the present period, that some of its noisiest authorities insisted on its being received, for good or for evil, in the superlative degree of comparison only.

– Charles Dickens: A Tale of Two Cities

Yesterday (Wednesday) was a birthday of sorts… – not the anniversary of my coming into this world (that’s in a week or so – hint, hint); but of me being given my life back, thoughtfully and carefully, and by a very special human being indeed: who has, with his family, also had to endure some very tough challenges. But, for many reasons – although I am immensely and eternally grateful for that great man’s incredible skill and deep compassion; and have been so every single day for the last ten years – it was not an occasion I had been looking forward to.

The circumstances prompting such dejection include a deterioration of my physical health that those who know me will have seen or suspected. And those with a brain (and, yes, if you peruse the images on this page, you will notice that I also possess one…) will have quickly grasped this decline’s bitter, but inseparable, relationship with the struggle I am currently undergoing with my mental wellbeing. What no‑one could have known – because, despite my suspicions, I was only finally brave enough to put myself through my umpteenth MRI scan a few weeks ago… – is that both of these downturns stem from marked physiological changes all too similar to those I endured in the years before (and which prompted) the complex operation that, a decade ago, vastly improved my quality of being (and continues so to do).

As I said to my current neurologist:

Although the experience was actually quite painless – I was discharged thirty-six hours after admission in a much, much better state than I had entered the hospital: having [reclaimed] the use of my left arm and hand (which was now full of sensation again); regained some movement in my neck; and didn’t walk like a drunken penguin – it is the associated risks I do not like. Nor do I enjoy the thought of this having to be repeated over and over again.

[Technically – for those who may be interested in such things – the procedure was a dual-level anterior cervical discectomy and fusion at C5/6 and C6/7. In other words, I have a metal plate screwed into the front of three of my vertebrae: which holds my head on to my body. (Yes, this makes me Steve Austin! Yippee!) Most of the time, though, I forget all that scaffolding is there. However, without fail, every anniversary, my neck feels more bulky; somehow inflamed and heavy… – even though, of course, nothing has really changed; and the implanted alien structure is truly featherweight.]

All last week, we had an orphaned great tit – several times each day, regular as nature’s clockwork – try to enter the house through the same closed windows. It seemed so determined; and would cling to the frames, pecking at the panes, with all its might: not perturbed even when face-to-face with us scary, ginormous humans. It obviously knew the glass was there (although may well have imagined itself duelling with a mirror-image protagonist); and appeared to suffer no harm, physically, when constantly thwarted. It was also growing rapidly: quickly evolving from fluffy rotundity to sleek, smooth adulthood. I was therefore not overly-concerned for its wellbeing.

I sensed loneliness, though. Unlike the many young blackbirds, thrushes, finches, sparrows, dunnocks, robins and wrens who similarly perch on our back garden fence; cling to the feeders; or scrabble amongst the flowers, shrubs and vegetable patch for insects, worms and snails; this one’s long streams of repeated single tweets evoked no parental response; nor did it, to my knowledge, congregate with the many others of its kind – the flocks of further great, blue and coal tits that often visit (although which are now to be found feasting in the freshly-harvested fields… – hopefully now joined by my absent visitor).

I also perceived – probably because I was feeling it myself… – a great deal of frustration. I know I shouldn’t really anthropomorphize – although where would we be without the wonderful Watership Down and The Wind in the Willows…? – but I felt its pain; and now miss its recurring calls. It had become my daemon; and was, I suppose, a manifestation of what I was – and still am – going through.

Of course – as those few loyal readers of this blog will have anticipated – my response to all of this has precipitated more insomniac wanderings through the benighted village. For instance, early last week, stricken with vertigo, I lay on one of the benches in the churchyard, swaddled in my unseasonal body- and neck-warmers, my legs over the armrest, staring directly upwards: revelling for an hour in the bells’ quarterly chimes, as my eyes grew slowly accustomed to the darkness; praying for Perseids. But it was too soon: and I saw only one such meteor – although that was utterly breathtaking. I was, however, rewarded with the sight of a trillion individually-polished gems: some of them lining up to form the impressionistic backbone of the Milky Way. It was thus hard to drag myself away – even though my body had melded painfully with the rigid woodwork. Unfortunately, the rest of my wanderings, that week, were under gathered clouds: with only rare glimpses of what lay above; of what I sought.

Yet, this Tuesday night, lit by an almost full moon – and with even the Plough struggling to make its presence known against such radiance – I felt truly at peace: my long, accompanying shadow a reminder of the miracles that our planet’s journey through the firmament can produce; rendering the church tower a glowing bastion; the golden hands of its clock easily legible; as were the familiar names etched into the headstones. I could have limped all the way to Kineton: such was the energy I was imbued with.

But yesterday, the (inner) gloom returned: reminding me that troublesome decisions have to be made; that I may have to carry out a pilgrimage to my original saviour; that – just as I find a way of life that is approximately practicable, and completely fulfilling, as well as within the limits of my disability – I may have to put everything on hold once more; or attempt to adapt, yet again, to another step-change in infirmity. I honestly feel as if I am that small bird, endlessly pecking away at the indestructible….

But that’s all in the future. Now, it’s just time to pull my boots on, and head out into the night again: acknowledging that there are far too many people in much, much worse situations. If nothing else, being enveloped by the moon’s cooling light is a great reminder of my position in the universe; and of the beauty that completely surrounds us.

Not How it was Supposed to be…

The terror of Jeremy Hunt’s Monday morning meetings to review trusts’ debts and waiting lists forces managers to put satisfying the health secretary above patients.

– Polly Toynbee: For a clear view of the NHS, look past the politics and promises of a cure

Generally, I love the NHS, I really do. Specifically, I love the fact that it exists; I love its founding principles; I love the many saints that work there, pushing the limits of responsibility; I love what it can achieve, as an organization, when it works well. However – and you could see this coming, couldn’t you…? – I do not love how it frequently functions in the real world; in my real world; how so often it has let me and my family down – whether through its lack of realistic funding; its commoditization of patients (turning us all into market-oriented ‘customers’ or ‘consumers of services’); or simply the arrogance of those in command.

Seven years ago, my partner had a life-saving operation – which, later, the kindly surgeon told us, he believed she had only a small chance of surviving – because A&E had failed either to take her complaint of pain and illness seriously; or were just too rushed to bother; and had sent her home. I am fortunate – and selfish enough to appreciate it (despite the mind-body conundrum stemming from my inherent, lifelong socialism (and lengthy Labour membership)) – that, although I no longer work, because of my disability, my employer still provides me with private medical care: so the surgery was carried out, yes, privately. Otherwise, she simply would not be here. Obvious, urgent symptoms were ignored, disregarded, or just not noticed by those at the NHS hospital.

Similarly, after each of the three serious road traffic collisions that caused my disability, my attendance at hospital – and, after a long waiting period (“it’s only whiplash”) – was addressed with proffered, low-dose painkillers. Again, each time, I was sent home. After the last incident, my then GP – having, because of my obvious difficulties (and agony), sent me for immediate CT and MRI scans: which revealed serious damage to my cervical spine – ranted at the hospital involved: but with little effect. Again, it was private medicine – and a long series of complex, expensive surgeries – that saved me. At best, I would not now be able to walk (although it’s still an intense struggle). At worst, I would have been paralysed from the neck down.

¶

It is yet another example of the NHS’s ongoing failure to provide deaf patients with information or dignity during their treatment while also denying them the chance to express their wishes and feelings….

     “He’s an intelligent man but in there they don’t value his intelligence at all.” They added.

     “He has his rights trampled on, he can’t express himself, he doesn’t know what’s happening and he’s left behind a curtain. Even if some nurses just learned the basics of how to communicate with deaf people that would make a huge difference but it just feels like it’s too much to ask.”

– Andy Palmer: The story of a Deaf man in hospital at Christmas showed me how the NHS continues to fail deaf patients

I have always, though, tried to give the NHS the benefit of the doubt; and – apart from the time I lived in north London – have often been rewarded with, at least, caring, thoughtful GPs (especially the rural ones: where care was more personal; more considered). Referrals to local hospitals, however – maybe because my condition is extremely complicated; and involves more than one specialism (a failing of the NHS itself, I believe – not everyone’s sickness slots easily into one category…) – have nearly always left me disappointed; physically worse off; or both. Much of my treatment – which basically consists of me coping with whatever my body decides is going to fail next – has stemmed from thorough research on my part being reinforced by my GP (and none better than my current one: who is as patient (sorry) an exemplar of the intelligent, knowledgeable, honest, kind-hearted, country doctor as one could ever hope for).

However, last year, the surgery where she works changed hands: it has new partners in charge; and seems to be morphing into the very (uncaring) model of an urban practice – with a real, demonstrable, lack of understanding of the skewed needs of the skewed demographic of its aging, rural population. For instance, being extremely hard of hearing (as are approximately one-in-six in the UK), I have always communicated with the practice through email (although, initially, I had to stress the making of “reasonable adjustments”, etc. to achieve this). That way, I can choose and format my words carefully, and attach relevant documentation.

Having an email address (especially for deaf patients) – according to Action on Hearing: citing their advice on Medeconomics – is also best practice. So, having read that article, I contacted my GP (as you will soon learn why, via Twitter):

Me Do you have an email address for patients like me? It appears to have vanished from your website!

Surgery we prefer patients to use the secure patient access app

Me When I have used this in the past, it has been hit & miss; also not useful for detail or longer messages. Email is simpler.

Me Just discovered a message sent in Jan 2015 that has no reply. Surely communication method should be the *patient’s* pref?

Surgery You can copy and paste your enquiry that you would have sent via email on to web version of the patient access app

Me I’m sorry: but that’s really poor. Did you actually read the original article? I don’t think you actually understand just what barriers are in place for those of us who cannot use the phone. I am deaf and disabled: and you are making life even more difficult: when I thought you were there to help/listen. Not happy; and seriously thinking of changing GP.

Surgery I gave simply advise to send electronic communication via the secure patient access app that is the same as typing an email

Me Is the word “care” actually in your vocabulary? This is *not* the way to talk to your patients.

In other words (although I accept that I – justifiably – lost my rag…), I am now instructed to communicate in an extremely limiting, difficult manner: which only allows me 450 characters; no formatting; almost no punctuation (“The only characters allowed apart from numbers or letters are full stop, comma and apostrophe”); no attachments; and is governed by a huge set of ‘Message Guidelines’ – including a prohibition of “sending medical information about your condition or treatment”. It is therefore cumbersome in the extreme. And not fit for purpose. Indeed, it has obviously been established simply to be convenient to the receiver – i.e. the practice – not the patient. (With only ten-minute appointments, it is hard to see how the patient’s needs are ever a driver for good customer care, though.) How am I – as someone who cannot use the telephone; and cannot always travel (I have probably cancelled more appointments than I have attended – due to ‘ill-health’); and who often is at my ‘best’ (my most conscious) during the night – therefore supposed to communicate; ask (scream, sometimes) for help; discuss my treatment? (In emergencies, my partner can telephone for me – but she does have to go out to work, you know.)

It is bad enough when commercial enterprises struggle to understand the needs of the deaf and disabled (therefore, of course, contributing to that disability) – but I find it utterly insulting that a public body meant to support my health deliberately erects health-related barriers in my way. Are my medical needs so complex that the practice cannot – or do not want to – help me? Or are they just so insolent that they – and by this, I really mean the partners who have instituted these new self-defeating decrees – believe they can dictate to a patient how they must comply with regards to their own (in my case, bloody awful) life?

¶

In the entrance of the headquarters of the University Hospitals of North Midlands NHS trust in Stoke-on-Trent is a small plaque. “A patient,” it discreetly says, “is not an interruption to our work, [but] the purpose of it. They are not an outsider in our hospital, they are a part of it. We are not doing them a favour by serving them, they are doing us a favour by giving us an opportunity to do so.”

– The Guardian: A portrait of the National Health Service: ‘It’s almost like a religion’

Currently, The Guardian is running an admirable four-week series, This is the NHS: stressing its advantages; its benefits; its successes – contrasting these with the present Government’s atrocious attitude to funding (completely in line, of course, with its atrocious attitude to anyone who is not stinking rich, like its own members). But where – asked one reader – are the “stories about misdiagnosis and poor treatment”?

Admittedly, both my parents owe their sight – and their ripe old age – to certain aspects of the NHS: but even these “successes” have been riddled with mistakes; with ignorance and arrogance:

“Your dad’s old: he’s therefore bound to be a bit forgetful.”

     “No, he’s had a stroke; and, before it, his mind was as sharp as a tack; he completes the crossword and sudoku every day; used to teach mathematics to A level; and, physically – well, apart from the arthritis that comes from a lifetime of cricket and football – is fitter than I am: by a long way….”

      I had to have a major, extremely public, shouting match – way beyond my normal, reclusive levels of embarrassment – to get him treated (both senses) seriously. He is now fine – probably because of his innate strength; and a supportive GP.

Although my favourite snafu has to be waking up on the operating table, when I was eighteen, about to have my appendix removed – because I had an obvious-to-everyone-but-the-registrar kidney stone. Yup. (Admittedly, having been very ill when I was born – having to spend a long time in hospital, having then developed pneumonia, with my mum always at my side – I would not have been in that operating theatre without amazing post-natal treatment. But that was decades ago: when there were enough doctors and nurses to be able to offer such prolonged intensive care.)

¶

A last thing that peeves me about the NHS is how we have been taught to treat it as a charity – when it is supposed to be a fully-funded public institution. There are volunteers – which I would understand were it the National Trust – and we are also supposed to be delighted to donate to campaigns such as the Stratford Hospital Cancer and Eye Appeal. As much as I love the Orchestra of the Swan, I really do not understand why they felt it necessary to record a CD (however wonderful) in aid of this – when, to me, such facilities should be part of the ‘core offer’ paid for by the Government.

The NHS was great – and can be again. Of that I am certain. However, until we stop believing the Westminster-issued propaganda that sells it to us as a luxury (similarly, disability and sickness benefits – don’t get me started…), such greatness will not be achieved (again).

I am lucky enough to have seen in great detail (although what took me there was the exact opposite of “luck”) how efficiently private medicine functions – much of which is obviously down to the exorbitant amounts of money involved. But private medicine also delivers from an ethos of individual healthcare and trust that is beginning to fade from some areas of the NHS (even, though, frequently, there is an overlap of personnel); and from a lack of management interference. Surely there are lessons to be learned…?

Triangulation points…

In the mid 1980s Dr Martin Barnes created the Triangle of Objectives. The triangle demonstrates that quality, cost and time are interrelated. Focussing or fixing one point of the triangle impacts the other two.

– stakeholdermap.com

I first came across the above ‘project management triangle’ or ‘triple constraint’ – sometimes also known as the ‘scope’ or ‘cost-quality tradeoff triangle’; and “one of the most well known and well respected mechanisms for signifying the interaction of the key attributes of a project” – when working for a software development company, over a quarter of a century ago: it being stressed, at the time, that “You can optimise for two at the expense of the third, but you can’t maximise all three at once”; or, as one colleague put it to me, a few years later (and a little more bluntly): “Time, cost or quality – which two do you want?”

I only raise this device, because, in a recent post – prompted by a problem with (actually a failure of) my hearing aids that was, at the time, (shall we say) dealt with less than satisfactorily by the NHS – I made a plea to those in power, those that (should) care for us: writing that…

We did not choose to be born or become deaf…. Do not treat us, therefore, as if we are the deserved lowest of the low. Instead, please offer us the hand we need… – your hand.

…and yet – call me an old cynic (which I am: on both counts) – to my amazement, my supplication was answered. Not at first, natch – although I did receive one of the better attempts at a response to my list of criticisms: even if, as with all such ‘standard flea letters’, it either deliberately or unintentionally ignored some of those most salient… – but then, the writer was the person at who I had singularly aimed my vehement reproof; and therefore very much on the back foot. But I was then – once spleen had been vented (albeit inaccurately and incompletely); and satisfaction was (sort of) seen to have been had… – referred to the care (and that is certainly the correct term) of someone who obviously gave a damn. And then some.

It would – as a qualified grump – be all too simple to infer that this apparently newly-enlightened customer service (not ‘patient care’: we are all “customers” now – even in an healthcare delivery environment) was an act; a performance simply to quell (or satisfy) my grumblings: motivated solely by my complaint (not that one should need to complain, to receive good service – especially as there is an associated risk of revenge…). But it was actually astoundingly obvious – and from the moment I entered this lady’s “care” (I won’t embarrass her by publishing her name…) – that here was someone who actually, continually, sincerely, and consistently, innately, was interested in my perspective, needs and wants; was bothered; gave so much more than a monkey’s. And had obviously made a career of combining her expertise with a deep desire to help. Someone who was not only interested in those “needs and wants”; but was willing to take the time (and the time-consuming steps) to deliver what I, as a consultant, would once have called a ‘quality outcome’ – no conditions attached.

By the way: you could, of course, moot that no element of cost was involved in such a transaction – but the scheduled forty-five minute appointment started a quarter-of-an-hour early; and then ran over by not quite an hour: and there is, of course, a financial outlay associated with the provision of both the ministration of compassionate co-operation (by way of salary, office use, etc.); as well as that of the replacement equipment required to solve the problems I had suffered and therefore raised.

¶

Never before had my hearing been so thoroughly deconstructed – and then rebuilt, tiny piece by tiny piece! And, therefore, never – or, at least, not since I was first issued with hearing ‘instruments’, over six years ago – has my digitally-reinforced soundscape been so clear, so strong… indeed, so bloody wonderful! Such amazing customer service, needless to say, should be the norm, though, not the exception. But, of course, the NHS has been stressed by successive governments into shrinking all components of that ‘tradeoff triangle’ – with not-so-surprising results (well, not to those with hearts and brains). Not that this “stress” should be an excuse for contracting compassion; attenuating attention. In some ways, these ‘qualities’ should be increased – to compensate for the shortening of appointment times; and the diminishing economic investment. They are the reason those who can afford such care, use private medicine; and those who can’t, migrate to ‘alternative’ healthcare: where attention and treatment is holistic and personalized; and time is taken to understand the individual.

I could, of course, go into a prolonged rant, now, about the creeping privatization of the NHS; the decimation (and beyond) of all public sector support of “the individual” – whether childcare; education; transport; or social care, etc.. But this is not (yet?) the time or the place. This is just to say a big thank you to the lovely, attentive, understanding, remarkable, adept audiologist who went several giant steps beyond the norm. And to whom I therefore owe a great deal – for the improvement she has made, not just to my hearing; but, consequently, all aspects of social interaction and enjoyment of the world around me.

Deaf, not dumb; human, not insect…

On David Cameron: “He’s the most facile, superficial Prime Minister there has ever been,” claiming that “he just shoots from the hip” and makes one-off commitments that “he cannot deliver on”.

– John Buttifant Sewel, Baron Sewel: reported in The Independent

As the Tories increasingly head Farage- or even Trump-wards, David Cameron is currently in hot water (mind you, Philip Hammond is no better) for his use of intemperate language in describing the human beings who are trying to enter Britain – both to better themselves, and to escape from régimes (some supported – or not opposed when they should have been – by the British Government) where they almost certainly have no future. (Mind you: it is probably better to be “in hot water” than drowning in the Mediterranean….)

Whatever your feelings around immigration and the free movement of people, it should be difficult to witness the suffering these people have to endure without being moved – either emotionally, or practically – especially if you are in a position of power: able to actually do something about the situation. But, as always, our PM’s response – both in action and in terminology – is overly (and consciously) simplistic, and extremely patronizing in the way it is communicated. (If Iggle Piggle is the master of anything, it is gesture politics.) It is all too easy to find yourself believing, therefore, that Cameron has no heart; and, given the track record of his administration, scant regard for the huge majority less fortunate than him and his extremely rich cronies.

¶

I begin any conversation by warning you: “I’m terribly deaf.” But you don’t take it seriously. You think I’m exaggerating, or you start by raising your voice then forget moments later, speaking at a normal pitch again, leaving me helpless.

– The Guardian: What I’m really thinking… – The man with hearing aids

When I was at school, my two main interests – apart from reading and re-reading as many books as I could lay my hands on – were music and art (both consumed and produced with great passion – if not consummate skill…). It was not unusual to be asked, therefore, which sense – hearing or sight – was the most important to me: and I would have answered then, as I answer now… both. (I always was – according to my dad – “an okkerd bugga”.) However, as age and infirmity take their toll, I have been luckier with my eyes than with my ears (as a synecdoche for my complete, complex, and failing, aural system). And yet my principal, practised distractions from the pain that rules my life are still art (usually in the form of photography) and music (now confined, though, to rehearsing that with which I am already on good terms). Some books, I know, I could always listen to, if my eyes failed me: but I would sorely miss their texture and smell.

But… losing your hearing – however it goes; and whatever other side-effects you may personally be unfortunate enough to experience: tinnitus, hyperacusis, diplacusis – always comes with one accompanying characteristic, albeit externally-expressed, symptom: you will suddenly be rendered utterly stupid in other people’s eyes; and will, therefore, be patronized, Cameron-style, within an inch of your life. Not only by a large portion of the general populace; but especially by those entrusted with treating you. And the higher the level of supposed knowledge of your condition, or expertise, the more developed, the more habitual, the condescension. (And god forbid that you should proffer some “expertise” of your own – there is nothing so despicable as the ‘expert patient’.)

¶

My idea of a Utopian world is for everyone to go around like Teletubbies, with subtitled screens on their tummies.

– David Lodge: Mail Online

Such medics do not just (although sometimes simply do not…) try and speak distinctly: but in that peculiar toffee-nosed way many English people reserve for residents of foreign countries that they have visited without even attempting to glean a few native words; as well as to babies and toddlers, of course. Their high-handed ignorance in sending out distorted, nonsensical signals is somehow transferred to you, contemptuously – it is your fault for not being able to comprehend the gibberish they utter, or receive it clearly. It is your fault, in other words, that you have lost your hearing. (In ‘ye olden days’, no doubt, it would have been simpler: we would probably just have been born cursed by the local god – and then sacrificed to them.)

And, sadly, once these haughty halfwits have mounted their high horses, there is no way to remove them from the saddle of superciliousness (well, except, perhaps, with the use of a particularly pointed epithet (or stick)). The habit becomes increasingly ingrained, each time they deal with some poor sod who has – through no fault of their own – no chance of comprehension. (I wonder if those who specialize in treating the blind are more sympathetic?)

We did not choose to be born or become deaf; as those who flee for their lives did not choose to be born into state-sanctioned hatred. Do not treat us, therefore, as if we are the deserved lowest of the low. Instead, please offer us the hand we need… – your hand.

¶

I believe that freedom of movement is a human right, not a trade agreement.

– Jeremy Hardy: Red Pepper

By the way, I am sure that all of us have ‘immigrant’ blood in us – and surely (certainly, in my view) this is cause for celebration? (Immigration, after all, is “good for all of us” – whatever your visceral response to it.)

My very-distant ancestors came over with William the Conqueror; and there are almost certainly additional, more recent, ‘foreign’ bloodlines incorporated into the Bardic mix that I am unaware of. Furthermore, my son is a quarter Polish (which includes a slight sprinkling of Lithuanian): and rightfully proud of his Eastern European heritage. When his grandmother and great-grandmother escaped the oppressive Communist brutality of the late 1960s, they were welcomed with open arms into the working-class community they settled into in the north-west of England. But this contrasts all-too-sadly with the treatment of Africans, West Indians and Southern Asians arriving in the same area at the same time…. Is it therefore wrong to wonder if those now attempting to cross into this country via Calais were white, if they would be treated with the same level of contempt (and labelled so pejoratively, with such utter inhumanity) by our illustrious leaders? (It just seems to me that racial stereotypes run deep in some quarters….)

Once upon a time, though, we were renowned for our deep and deliberate generosity to refugees; but perhaps, with the passing of the likes of Sir Nicholas Winton – who, incidentally (and with unconscious irony), the PM himself described as a “great man” – such altruism and sympathy, such concern for our fellow humans, should also be mourned…?

¶

We seem so deaf to the needs of others; so blind to the future of this planet and those we share it with. Is it too late to ask that we look without ourselves for a change; develop a more open regard for those around us – the ‘Others’ that we could (and should) gain so much from? It is all too easy to habitualize disdain for those who are ‘different’: those who we see as somehow ‘beneath’ us – whether this is caused by fear or by ignorance – and this is made worse when that “disdain” comes from those who are supposed to care and to help.

We should look and listen – always – and we should be more open to learning from them and about them instead: even if we profess such knowledge our speciality. Such people have much to teach us – especially about ourselves – whatever level of society we inhabit; whatever our rôle is in that society – whether ruler, carer, or just another in a very long line of extraordinary human beings.

Look closely at those who patronize you. Half are unfeeling, half untaught.
– Johann Wolfgang von Goethe

Never ascribe to malice…

In my long, varied, and deep experience, I have discovered that there are mainly two reasons for incompetence in any professional arena: namely, stupidity and greed. And they are not mutually exclusive: as is proven by the multi-storey car park developed (seemingly in haste – both from its makeshift appearance and its stunning lack of fitness for purpose (see below)) for the new Stratford Hospital – itself designed, apparently, to look like an ill-fitting conglomeration of partly-opened kitchen cabinets. If the Government is as keen to both commoditize (and subcontract) healthcare and create workhouse-like factories for the poorly-paid – especially those in the public sector – as I believe: then such architecture (and I use the term extremely loosely for something that has obviously been created by computerized machines with oversized egos, and no concept of the friendliness of the curved surface) will be a perfect environment (if not epitaph) for their joint demise.

According to Collins: “If you describe someone as incompetent, you are criticizing them because they cannot do their job or a task properly.” And, in my case, they are dead on. Doing a “job or a task” successfully does not – however right-wing your ethos – simply mean raking in money, or bringing a project in on time and budget. To function well, any facility must surely revolve around its users and their needs. But as George Osborne proved so adroitly, yesterday, such idealism, such ideology, such idiocy, is to ignore the slimy, hand-staining lure of profit. In this modern world of corporate scrounging and £93bn handshakes, the needs of the few (giant corporations) outweigh the needs of the many (little people) – as my hero Mr Spock would obviously never have said.

¶

When the “phenomenon of our times” Owen Jones wrote, in his “phenomenal bestseller” The Establishment: And how they get away with it, that the “great carve-up of the NHS is a threat to the health and even the lives of patients”, I’m pretty sure he wasn’t thinking specifically about the bent-over-double pensioner who took around thirty minutes to exit the labyrinthine travesty that HUBER Car Park Systems – whose slogan, “HUBER guarantees long-term, efficient and profitable use”, says all you need to know about why they were hired – describe as “Project Stratford-upon-Avon”:

Huber has constructed a 250 bays public car park facility for the Warwick NHS Trust in Stratford-upon-Avon. The car park forms a first part of a wider development in Stratford hospital; the steel structure is timber cladded and is serviced by two staircases and two lifts. The project is the first to receive the bespoke HUBER LED fittings with advanced controllers which provide low operational costs without increasing the installation times and costs.

Nowhere can I find an explanation (or boast) of how their “system” (however unsystematic in practice) benefits its actual users: with its overly-complex, indecipherable, automated ticketing machines; its narrow lanes – meaning that cars (especially the archetypal Warwickshire behemoths) cannot pass each other without great difficulty; and that all the multitudinous sharp corners must be taken (slowly) only in the few magical moments when there are no oncoming vehicles. It’s as if they have turned best-practice on its head to squeeze in as little investment, capacity and practicality as possible. (That’s why only 2% of the spaces are Disabled bays, of course.) For a service that deals almost exclusively in humans (you know what I mean: those soft, squidgy moving objects…) who are damaged in some manner, it seems to me that HUBER (and those who hired them) have deliberately gone out of the way to engineer an increase in the number of casualties entering the hospital: injured in the inevitable physical clash of SUV bumpers (with each other, as well as with disoriented stragglers); or mentally weakened by the tortuous, unmanned (ta-da: no fallacious living wages to supply!) payment gadgetry.

Were it not for the burly, hard-hatted, high-viz-jacketed saint who just happened to be passing by, I fear that the old gentleman, in obvious pain, and confused beyond belief (but ignored by those many hurrying folks besuited and lanyarded with NHS ribbons and tags), would still now be leaning on his stick, and the boot of his car, breathless: wondering both how he was going to shuffle across the incessant traffic entering, leaving, and almost-colliding; and then operate the Terminator-redux towering over his tiny, distorted frame. I admit that I was no help, either: as I too was befuddled and angered by the difficulties we were both having merely in attending for supposed healthcare.

¶

According to the Hospital’s own website:

There are exciting plans to build a new state of the art hospital in the centre of Stratford. The first phase will provide first class Cancer [sic] and eye services for local residents of Stratford and surrounding districts. Without these services near to home, patients previously had to travel long, tiring distances to other facilities which are further afield to receive treatment. In some cases cancer patients decided to go without their treatment as they were unable to travel long distances every day, when they may already be feeling weak from treatments.

It also says, under “Creating a pleasant environment”:

We understand that a visit to hospital can be a challenging experience. We want to ease this and help our patients and their relatives feel as comfortable as possible during their time with us. Our aim is to use charitable funds to create a homely and less institutionalised environment for the people that use our services. Research has shown that the environment in which a patient is treated can have an impact upon the healthcare outcomes. By developing a space that is theraputic [sic] and supportive of family involvement we will be able to reduce anxiety and stress, something that can aid recovery.

Which I can counter with only one word (and which The Good Lady Bard will tell you is my favourite and most-uttered) – bollocks. It is all well and good to spout such badly-crafted homilies; but it takes more than a jobbing copy- or speech-writer to turn them into customer-oriented, user-friendly reality.

Now, patients have “to travel long, tiring distances” simply to pay for their car-parking – which is only not free for the disabled because that would need the attendance of a costly human-being to monitor. And there is no doubt in my mind that “the environment”, as it stands – with its large ladling-out of “anxiety and stress” (which, of course, retards recovery (oops)) – can only have a majorly negative “impact upon the healthcare outcomes” of anyone trying to arrive under their own power. I would not be surprised if, as a result, there was soon a further increase in patients deciding “to go without their treatment”. Personally, I would rather drive all the way to Warwick or Oxford, than have to go through the struggles I and my disabled colleague endured yesterday.

¶

There is one drop of comfort in all this. According to the architects:

The new hospital… will include a new… energy centre and public realm as part of the strategic masterplan.

I would like to nominate myself to be the first leader of this new “public realm”, please (having first received some much-needed “energy”…)! And, if ruling it necessitates gratuitous violence (as I hope), Game of Thrones-style, then I would also like to nominate the car-park designers as my first victims. My weapon of choice will, of course, be a carbon-fibre-shafted walking stick, wielded brutally from my large Japanese war-chariot. There will be blood.