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Not all of it was wonderful – 63 years living, and dying, with the NHS…

Posted Oct 17 2011 8:43am

When the chips were down, and things got serious, it’s fair to say that very little was wonderful or even acceptable, and I see no reason to suppose that my experiences are unique, or even particularly unusual.

I keep reading, in newspapers, and online, that NHS cuts will affect women, or children, or babies, or old people. Enough! Can we simply agree that NHS cuts have the potential to fuck up everyone’s life at some point? Singling out groups of people is divisive – we are all at risk.

And it’s important not to forget, despite the sheer number of NHS cheerleaders, that in many areas, the pre-cuts NHS was, in fact, seriously defective. It needs an overhaul, I think many people will accept that, but that doesn’t mean I agree with the total fuck-up that currently happening. I most certainly don’t.

I have, since the age of 4, spent my life in a close relationship with the NHS – they’ve pretty much kept me alive since 1948. Until the age of 10, that was in Manchester, but most of my life has been spent in and around Liverpool, at Alder Hey Hospital, initially, the Fazakerley and Walton Hospitals a hell of a lot, primarily at chest clinics, only rarely as an in-patient, and for the most part medical care was absolutely fine. There were some problems, occasionally potentially serious, listed below in no particular order and, of late, they’ve got far worse, actually putting my life in danger.

The first indication that all was not well was the death of my father, when I was 12. Taken into Walton Hospital with “rheumatic fever” he was dead in 4 days. Of septicaemia, only diagnosed at the autopsy, when it could have been diagnosed within hours of admission by a blood test. He’d probably still have died – he’d been ill for over a week and it was extremely advanced – but perhaps not.

Then there was the infection in my foot, caused by a decayed skin graft (had I not been discharged a week early because they needed the bed – that was 1960, little has changed since in that respect – that might have been spotted), which took months to get rid of, the necrotic tissue being scraped off twice a week, and my foot soaked in antiseptic solution** and, before they turned it around, the flesh was eaten down to the bone, and the joints of my big toe wrecked. A simple toenail removal almost cost me my foot, at least.

**It’s occurred to me since to wonder why antibiotics weren’t prescribed – they were available and had been for some years.

Then there was the tosser who tried to bend my broken wrist to fit a bent metal splint – instead of straightening the splint, which was malleable and clearly damaged. Then there was the A&E nurse who came very close to death when she sprayed plaster remover instead of antiseptic into an open wound. I was a biker – we get dinged up a lot – and on that day I’d hit a dog, and slid down the road with a quarter of a ton of Honda CB750 on my leg (bloody dog was fine and ran away!). The friction wore through my leathers and my boots – and ground the flesh of my leg down to the bone at the knee and ankle, though the knee was by far the worst – and this fuckwit nurse sprayed zinc oxide solvent all over the shredded flesh and bone, instead of soothing antiseptic! She was bloody lucky not to do that to someone a lot more violent than me – the pain was unbelievable, and I wasn’t having too much fun to begin with.

Lastly, there was the jerk, on a different occasion, who set my broken hand so badly I was in more pain coming out than going in. Got home, unwrapped it – it was just a roll bandage – re-set it myself with all parts correctly aligned, and all was well (the doctor who’d “set” it somehow got my little finger trapped under my other fingers, which put tension on  the breaks and kept them open – the ring and little finger knuckles were snapped off the metacarpals.

All of that, however, was between the ages of 10 and 40, which rather puts it in perspective – inexcusable carelessness, certainly, for the most part, but spread over 30 years, possibly tolerable – I can hear some of you saying well, considering how many people are treated over the course of a year, things are bound to go wrong, but if you extrapolate my experiences across the entire population, then it doesn’t looks so great, does it? Looks pretty bloody dismal, in fact.

Still, until I was 40, my basic relationship with the NHS –  i.e. that relating to my respiratory problems, asthma and bronchiectasis – was absolutely fine, except for the fact that medication was pretty basic and not wonderfully effective; no-one’s fault, except maybe Big Pharma.

Treatment continued to be basic until the release of the Ventolin (Salbutamol) inhaler in 1968 (which turned my life around), and Phyllocontin Continus, a sustained-release Aminophylline preparation, far more effective than previous Theophylline-derived drugs, with the added bonus that it didn’t make you puke after every dose the way Theophylline could, and often did.

Had it not been for those two drugs, which allowed me to be very much more active than had previously been possible, and thus become extremely fit, I doubt I’d still be alive today. Ventolin made it possible for me to take up backpacking in 1970, Phyllocontin stopped me leaving a trail of puke across the countryside after taking my other meds.

Both are still the central planks of my COPD meds.

Back to the NHS, though, and now, newspapers are stuffed to bursting with tales of how the shining angels of the NHS – you’d think is was bloody Mons , you really would – saved their lives, their granny’s life, whatever, and how dare anyone criticise such wonderful, perfect beings?

OK – I don’t doubt that, at times, the NHS, as a whole, is capable of staggering brilliance, but when it is bad, when you get down to the individual minutiae, it can be, and too often is, fucking life-threateningly abysmal. It’s not perfect, never was, never will be. Nothing is perfect and, in all probability, nothing can be. But the NHS sure as hell can be better, and needs to be.

However, when I moved to Wirral in 1984, at the age of 40, any semblance of even average quality health care vanished. A few examples:-

Long before I officially developed emphysema, and thus COPD, I developed GERD – Gastro-oesophageal Reflux Disease – essentially, my oesophageal sphincter leaks, and stomach contents are squirted, under pressure, into my throat and, if I happen to be asleep, drawn into my lungs – an effect akin to inhaling battery acid, both in terms of pain, and the damage it causes.

The first time this happened, I had no idea what it was called, I just knew what had happened, and I was in agony. My wife called the GP (I couldn’t speak, I could barely breathe), asked for an emergency visit (about 08.00 – he arrived three hours later, by which time – aside from  the infection that would inevitably follow, I was almost back to normal). I explained what had happened, he said he’d never heard of such a thing, and what had clearly happened, despite all evidence to the contrary – like my lips cracked and peeling, and my mouth and throat reddened, by acid burns – he announced that an abscess in my lung had burst. An abscess that caused no previous symptoms? Bullshit.

Think about that – a qualified doctor who had never heard of something as common as GERD (this was 15 years before my first Internet connection, when I found out that GERD and serious respiratory illness go hand in hand, which had been well known for decades). But I think the real reason was rather more unforgiveable, because I’ve run across it many times since – a flat, uncompromising refusal for a GP to accept what a patient knows to be the problem. I can only assume this is down to basic, and dangerous, insecurity – I’ve been to medical school, I’ve got a degree, I’m not having any bloody patient telling me what’s wrong!

Fast forward now, mostly glossing over 27 years of medical fuck-uppery, in which it took ten years to get my ME diagnosed – a decade during which doctors devoted an absurd amount of time and energy trying to convince me I was either insane, malingering, flat-out lying, or all three, instead of investigating what I was complaining about (I later discovered that I had presented with absolutely classic ME; when I finally got a referral to an ME clinic, having convinced a new GP, who hadn’t yet been poisoned by the rest, that I genuinely had a problem, in took the consultant less than half an hour to diagnose text-book ME) – which eventually cost me my marriage.

Later, a consultant at the pain clinic told me he wouldn’t have me in the programme me unless I admitted, there and then, that my pain was psychological, the closest I’ve come to kicking the shit out of a doctor – and on to 2011, when, in January I was hauled off to Arrowe Park Hospital with pneumonia, and empyema in my left lung (which still doesn’t work), where they made a serious attempt to kill me.

That horror show is detailed here , here , and here – no need to go over it all again, just a couple of examples.

For instance, Arrowe Park won’t provide enteric coated Prednisolone tablets (oral steroids), because they’re “too expensive”. They will, though, happily provide uncoated Prednisolone, putting all who take them at risk of a potentially serious gastric bleed (in my case that process takes about 36 hours – so I refused them), which will cost far more to fix than providing the slightly more expensive enteric coated ones in the first place.

Not all is sweetness and light in the NHS, then – especially when the bean-counters rule.

Like the cretin who, while I was sleeping, plugged me into 2 litres of i-v saline at a time when my lungs were so full of fluid, pus and assorted crap that my breathing was severely compromised and I was taking drugs to rid them of the excess fluid – and bloody near drowned me from the inside. Had I not woken when I did and made them remove the i-v there is a very good chance I would not have survived the night. As it was, after just a third of a litre had gone in, my breathing was even more seriously impaired. That never made it to my records.

Like the consultant under whose dubious care I was, Dr. W. Leong**, who failed to record the fact that I had been diagnosed with serious congestive heart failure.

**I’ve held back from naming him but, basically, fuck him – he’s the reason my health is as seriously screwed up, now, as it is. The knock-on effects of that disgraceful and inexcusable failure to record what was a bloody serious diagnosis may yet encompass my death. My medical records for that period, Dr. Leong, are a fucking joke, and as consultant, that makes you chief can-carrier. If you don’t like it, you still have time to put the record right. You can reach me via the comments.

Like the anonymous pharmacist – or maybe a doctor – he didn’t say, who tried to persuade me to take beta-blockers for the heart failure, in the full knowledge that with my respiratory problems they could have killed me. I refused. He later sent a message that I was being prescribed Digoxin instead. But hey, guess what – none of this was recorded either. Nor did the drug, like so many others, ever find its way to me. Any comments, Dr. Leong?

I have my records for the 4 days I was in APH, before asking for early discharge; 4 sleepless days and nights with pillocks who most certainly did not have my best interests at heart, with no useful pain meds, and I was on the ragged edge – they are mostly a work of fiction where they exist at all – though there is an ECG showing clearly that I’m in deep shit. In my discharge notes they even got my gender wrong.

Now, still with an incomplete diagnosis of my heart condition. I have a confirmed diagnosis of aortic valve calcification and stenosis, but heart failure is still in dispute (mainly by a GP “with a special interest in cardiology” who had been told I had self-diagnosed heart failure and set out to “prove” at any cost that I do not. She cannot, however, account for my symptoms in any other way.

Empirically, there is no doubt I have heart failure – if I stop my heart failure drug I get dramatically worse very quickly, if I start it again, I improve. Ergo, I demonstrably have heart failure. This, in conjunction with the aortic valve problem, means – and I’ve read much of the available literature on the subject – I have a life expectancy that can likely be measured in months. If I’m lucky – the effort of typing this has me gasping for breath! And I’d be getting far more appropriate medication, if it had not been for Dr. W. Leong fucking up my records.

There can be no doubt, then, that despite its successes, the NHS is, to a considerable extent, deeply defective in many areas, because assuming I was singled out for specially inept and neglectful treatment would be ludicrous, and that way madness lies – if it happened to me it must be happening to very many others, both here on Wirral, and across the country.

The NHS does need an overhaul, especially in record keeping, nursing skills – mostly abysmal at APH, on Ward 32 – in doctor-patient communication, and in the adequate provision of drugs, most of which, even if prescribed, failed to reach the 6 of us in my bay on Ward 32, at least. I have no reason to suppose the rest of the ward was any better served, or the hospital as a whole. I have no doubt whatsoever that patients are dying as a result of sheer incompetence and mismanagement, not to mention inadequate record-keeping, at APH, and doubtless in the NHS as a whole, because there is no reason to suppose either Arrowe Park, or my experiences, are unique.

So, by all means let’s do our utmost to protect the NHS from Cameron’s carpetbaggers, while not losing sight of the fact that there really are many things wrong with it that do need to be addressed. And sooner rather than later.

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