I’ve had a letter from Arrowe Park Hospital, complaining about my blog posts of April 18, May 16, and July 14,18, and 23, and they invite me to amend or remove them, and not do it again!
But here’s the thing, they just can’t be bothered to tell me what it is they object to, so how can I possibly amend them?
I can only assume, then, that they simply object to my criticism on general principles. Might I suggest then, APH, that if entirely justified criticism irks you so much, you might want to consider putting your own house in order and not giving vulnerable and seriously ill patients any reason to be pissed off at you and your staff. Just a thought…
And, APH, those blog posts reflect my experience – or lack of it in some cases, since the earlier ones refer to a total lack of communication – which, I still say, put my health, if not my life, in danger.
I’ve re-read the posts in question, and I accept that the tone is angry, extremely so in places, but, given the events described, is that really surprising? What am I supposed to do? Just accept such cavalier, inept, or just plain dumb, treatment and say nothing at all?
As for the July posts, I stand by my most serious allegations, that I was misinformed about the safety of the beta-blocker Nebivolol (in that it is not as safe as claimed), and that it can conflict with the drug that was prescribed alongside it, Diltiazem. These facts are verifiable by anybody who can read the available literature. That Nebivolol did not impair my breathing, and did not react adversely with Diltiazem I put down to pure luck – it could so very easily have done both, to my considerable detriment. I also expressed my dismay that the consultant could not get the spelling of Nebivolol right – this isn’t as nit-picking as it seems, as such errors could have serious consequences.
And in the July posts, nobody is named, so nobody has been compromised by my opinions, and in the earlier posts Dr. Newall was criticised, and rightly so, for ignoring me for 4 months, when I had explained, in detail, my difficulties in getting to the hospital, and my reasons for declining tests in which I felt the dangers outweighed any benefits. That’s not libellous, it’s a cast-iron fact – prior to that, I had no hesitation in saying, here, that I thought he was one of the good guys, a rare event at APH.
At no point do APH claim that anything I’ve written is untrue or libellous, so what’s their problem?
On a more formal note, Arrowe Park Hospital (I suppose somebody there is reading this post, but I shall also reply via email), if you would care to tell me what it is that you object to in the above posts, I shall consider your request. That you don’t actually like what I’ve said I can understand – that doesn’t make it any less true, nor is it grounds for asking me to remove the posts – and believe me when I say that I like even less the events that moved me to write them in the first place. But please, do read on, and learn why I have such a low opinion of your hospital, which never fails to live down to my expectations.
Let us, for the sake of clarity, revisit the low points of my relationship with APH over the past 27 years. I’ve said what follows before in various posts, but this is mainly for new readers, and to give perspective to the posts complained of.
Aside from the chest clinics that I attended for some years in the 80 and 90s, every other appointment has turned to ashes, sometimes offensively so, culminating in the life-threatening farce of my admission in January 2011, including the moron who told staff (but not me), that I had heart failure on or about January 26 2011, and didn’t bother to enter it in my file either, causing me massive problems.
So of course I’m angry with APH – I’m absolutely fucking furious! Anybody in my position would be. So, let’s go back to the beginning…
From the mid 80s on I was subject to bouts of extreme tachycardia, often accompanied by violent and uncontrollable emptying of my bowels – classic fight or flight syndrome – and this would happen, to some degree, almost every evening. My GP, at a loss, said that I should dial 999 and get an ambulance because, she assured me, Arrowe Park would get to the bottom of it.
They didn’t, as once they’d satisfied themselves I wasn’t having a heart attack, they lost interest, but they did flag me as a hypochondriac, and made it quite clear that they were sick of me turning up. So, as it was clearly futile, I stopped – however, I believe it’s this hypochondriac tag that still plagues me. The problem persisted well into the nineties, before fizzling out. Needless to say I’d long since given up trying to get anyone to take it seriously, though there was one doctor who thought it might be cancer of the adrenal glands – it wasn’t.
Note: While in power, Tony Blair suffered similar bouts of tachycardia. He was admitted to hospital, the cause identified, the problem fixed. Which is exactly what should have happened to me. And by tachycardia, I mean, in my case, a heart rate of up to 240bpm – my pulse wasn’t beating, it was buzzing.
In 1996, my GP got me admitted to APH with a suspected coronary. I was in the cardiology ward for 2 weeks. Every other suspected coronary case that came in during that time was sent for an echocardiogram – except me. At the end of two weeks I was told I’d had an angina attack, and was sent home.
However, if it was angina, why did they keep me in for a fortnight? Why didn’t I get an echocardiogram like everyone else? And, more importantly, why did it take me six months to recover (as I know all too well, there are no lasting effects from angina), and why did somebody at the hospital arrange for a home help if there was nothing actually wrong with me? Where they – and this has only just occurred to me – hiding something from me? I really don’t know.
I subsequently had an angiogram, which showed that my coronary arteries were clear. So, whatever I had, it wasn’t a conventional coronary event, but it was certainly something. It should have been investigated – it wasn’t.
I have since found out that lack of oxygen can cause a spasm of the heart muscle, constricting the coronary arteries and mimicking a coronary by cutting the blood supply to the heart muscles. By doing so, it can presumably do as much damage as a conventional coronary – the salient fact is that the blood supply is cut or reduced, the why of it is less important.
Around 2005 my optician got me urgently referred to the eye clinic at APH, because she didn’t like what she saw in my eyes. After much peering at flashing lights, and having my eyes peered into, I was told that the vitreous fluid in my eyes was hardening and as it did so, it was fissuring, filling my visual field with floaters. In addition, as it hardened, it was contracting, tearing my retinas. Naturally enough, I asked if there was anything I should be doing so as not to make it worse, and was told, amid great hilarity, to avoid bungee jumping – very fucking funny, saying that to a guy in a wheelchair. I was given no follow-up appointment, but I subsequently found out that this condition could make me blind. Anybody at APH care about that? Apparently not.
Then we come to the most dangerous event of all. In January 2011 I was admitted to APH with what turned out to be pneumonia and empyema (though by the time I reached the ward empyema magically vanished from my records and was never mentioned again).
On my second night there, while I was asleep, some lunatic connected me to 2 litres of i-v saline, at a time when there was so much fluid and assorted crap in my lungs I could barely breathe, and for which I was taking Furosemide (which I’d had to suggest). There was absolutely no clinical justification for the i-v, which began to shut down my breathing even more as I slept, and it was this which woke me. Furious, I made them disconnect the i-v.
Luckily, at this point, only 300ml or so had gone in – I have little doubt that had I received the full 2 litres I would very likely have died. And – guess what – there is no record of this in my notes. In fact there is no record of anything useful in my notes after I was moved out of A&E!
A day later I was told I had severe heart failure – or, more accurately, the staff nurse shouted across the bay, “Hey Ron, did you know your heart failure was so bad?” while she was writing her report. She did not, however, put that information in it.
A few hours later a guy arrived – doctor, pharmacist, plumber? I have no idea, he couldn’t be bothered telling me, or even coming close enough so I could see his badge – he spoke across the adjacent bed. He did, though, offer me a beta-blocker, which I refused because beta-blockers and asthma (or the medication), don’t mix, and the consequences can be fatal. He went off in a huff. I was told later, by the staff nurse, that I’d been prescribed Digoxin – which I never got.
When I got out after 4 days, I wrote up my experiences, and also – after allowing time for the hospital to do its thing and update my GP – wrote to him and asked him to medicate the heart failure.
Wrote again, rather more tersely. Got a call from a reception staff member telling me there was no mention of heart failure in my discharge letter or in my hospital notes (it was at this point I started the process of getting a copy of my notes via an FoI request).
Nothing happened, and carried on not happening, until the end of March when, in high dudgeon, I faxed an angry letter to my GP. A few days later he arrived at my door unannounced and not best pleased. I showed him my hugely swollen legs. He listened to my heart and announced that it sounded like heart failure! Did I get an apology for his failure to check this out for himself sooner? Yeah, right…
So he referred me to St. Catherine’s hospital for an echocardiogram (St. Cath’s is part of the same NHS trust as APH, and about as useful, as we’ll see). St. Cath’s decided that what I really needed was not an echo, but an assessment. With a consultant cardiologist? You’d think so, I certainly did, but no, I got a GP with a “special interest in cardiology”.
This GP, before she’d even laid a finger on me, spent 20 minutes telling me why I couldn’t possibly have heart failure, before listening to my heart, finally, hearing what my GP had heard, and launching into a panicked search for an emergency echocardiogram form!
As the echocardiogram room was just down the passage, I expected to have to hang around for a while before they could fit me in. But no. Her idea of an emergency appointment was 7 days in the future!
Went back the following Thursday, and as we now know, the echo showed that I have calcification of the aortic valve, with the inevitable narrowing of the valve as a result. As I later discovered, coupling this finding with my symptom set gave me an average life expectancy of two years,** about which Dr. Newall did not disagree. But I’m getting ahead of myself.
**That’s two years from onset, whenever that might have been, so depending on how the averages pan out for me I could have months, or even weeks left – or more, there is no way of predicting. However, if the average life span is 2 years, some must inevitably live longer than that, so maybe I’ll get lucky.
Back, after the echo, to see the ambitious GP with a hobby, and she goes back into her “you can’t possibly have heart failure” routine. I said look, I have all the symptoms of heart failure, so if it isn’t heart failure, what else can it possibly be? She had absolutely no idea. Not the least clue, but she would refer me to someone who could tell me (which, of course, she never did – I’ve researched my symptoms online – they always come back to heart failure).
I later wrote to my GP, pointing out that, as far as heart failure was concerned, if it looked like a duck, walked like a duck, and quacked like a duck, it was a goddamned duck – there was no need to jump through hoops trying to make it into something else – and asked for a second opinion.
The rest, as we know, is history, and brings us back to the posts that APH has taken a dislike to and in which the continuation of Arrowe Park Hospital’s 27-year history of extremely poor treatment is documented.
So, tell me, please, is there anybody out there who really can’t understand the admittedly extreme anger of my blog posts when it comes to this godawful hospital? Anybody at all?