Arrowe Park Hospital censorship attempt…

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.

No response.

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?

 

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20 thoughts on “Arrowe Park Hospital censorship attempt…

  1. Excellent post once again Ron, where you get the energy from Ive no idea!!

    If APH have a huge problem with what youve written, does that not say something about their policies and procedures and indeed treatment of their patients when it takes a post like yours to get somebodys attention.

    Well done you, youve raised some hackles, well what a shame!!

    • I don’t know either, tbh! Though it did take three days to write.

      The thing is, there is a protocol with blog posts – not liking something isn’t sufficient reason to take one down, never mind 6. If they think I’ve libelled anyone, let them get a court order. That, I’ll abide by.

      And, frankly, I think naming the guy who’d left me in limbo for, as it turned out, the better part of 5 months, was perfectly justified. As making a complaint to the GMC would have been, and I might just do that if APH get too annoying.

  2. I can understand why APH won’t like what you’ve written and are angry about it, and I’m glad that they are. It might just make them think about your lack of care and treatment, and do something positive about it for a change.

    • Oh, I understand why they’re angry too – but clearly, the idea that my anger might actually be justified hasn’t crossed their minds. Their collective nose is out of joint – too bad – my life is at risk.

  3. what you have stated ,I believe to be true Ron. I have been reading your posts for about 4 years, and eveything you have spoken about is truth.Don’t let these numpties get you going,do as you said and ask what is wrong with the notes you have mande . Best of Luck .:)

  4. Hi Ron,
    Well, Ron what can I say, but well done, the rats nest they call APH, are perturbed, your tenacity rewarded. How dare they, even suggest that you ‘amend your blog’, God your treatment there as been horrendous!

    Trouble is Ron in this country, some people can and do get away with murder, the NHS included, unless of course, you happen to be special, and even the Queens dogs get better treament.

    Fred.

  5. You have finally managed to get the buggers to acknowledge you! Well done that man! APH will not want this advertised as it is very clearly a case of neglect and smackes of neglect on those responsible. Keep up the blog Ron as there are a lot of us that really look forward to your posts and are also genuinely concerned about your health issues.

    Fight the good fight!!!!

    • Cheers, Chris.

      I have a sneaky feeling the next letter will be along the lines of “We think both parties would be happier if your GP referred you to another hospital.”

      Which would be fine if the next nearest hospital wasn’t in Liverpool – it might as well be on the moon!

  6. Excellent Ron, looks like you have ruffled some feathers. I’m not a hundred percent but reading between the lines I believe that there has recently been some ruffled feathers about another hospital visit by one of our bloggers, different hospital. There is no excuse for neglecting patients in any way, shape or form, I do have to say though that prescribing medications that are not to be taken together is quit common; I myself take many that cause concern and was originally prescribed in the U.S. and have safely taken for years, just as medications approved for one thing are also used for something completely different. Pregabalin is a seizure medication and I take it for pain I take Diltiazem and metoprolol for my heart and have had no problems they have worked well together for me. I’m not an easy case either, I sadly take 14 medications in the morning and 13 in the evening and between 2 and 4 through the day. Unfortunately, doctors, specialists etc. do not have all of the answers and do have to learn as they go along, but on that note, all tests available should be performed, meticulous notes should be kept, the patient should be kept informed and educated and the patient should be monitored and followed up and the best person to talk to about medication is the chemist. When ever my GP has a question or concern about my medications she calls the chemist right there and then.

    We have the right to inform other people about our experiences with services medical or otherwise, actually we should be able to rate hospitals, GPs, etc. online so as to educate others. Stand your ground Ron, you’ve done nothing wrong.

    • It’s a fact, though, Bev, that Diltiazem and Nebivolol, combined, can have potentially serious interactions http://www.drugs.com/drug-interactions/diltiazem-with-nebivolol-890-0-2788-0.html and at the very least the patient should be warned. And these days, consultants have all the information they need just a mouse-click away (GPs too).

      And in pretty much the same breath the consultant told me that Digoxin would accelerate my heart the way caffeine does, and, alternatively, slow it dangerously – pretty neat trick. In reality, the heart-slowing effect of Digoxin is very slow to kick in, which is why it’s fallen out of favour for treating tachycardia.

      And when my Nebivolol was delivered, I was asked if I’d like to sign up for an NHS follow-up, so I did.

      As it turned out, the prescribed dose was way too high, and my response to it plain weird, but I settled on 2.5mg at 06.00, and 1.25mg 12 hours later, by which time the first dose is out of my system and my tachy is heading for the stars again. That seems to be working well, and I’m sleeping better too.

      On the other side of the coin, the oedema in my legs is getting worse, so I might need a change before too long.

      And I’ve no intention of backing down – not without a court order, anyway.

  7. All new medications should be started at the lowest dose and increased as necessary, you do not start someone on a high dose. I like that website, that’s where I go. Each of us are different and medications can react differently to any one of us. Like I said earlier, meticulous notes should be kept, the patient should be kept informed and educated and the patient should be monitored and followed up in a timely manner. Getting older is bloody miserable and painful.

  8. I complained about APH and there midwife staff a few years ago and they contacted the website in question and asked for the post to be removed. APH just dont like anyone speaking out. You should post this on wirral talk ron.

  9. I think the “Heart Centre” at St Cath’s is run by the PCT, not by WUTH (who run Arrowe Park and Clatterbridge). So many different bits on the St Cath’s site though, it’s hard to know who runs what – I’ve just read that WUTH “manages” the St Cath’s x-ray service.

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