Response to Arrowe Park, who won’t be happy. Too damn bad!

I’m writing in response to Ms. Gxxxxx’s letter of  June 7th.

Before I go any further I should like to put on record the fact that I deeply resent her allegation that my “relationship” (I don’t think one appointment followed by having all my correspondence ignored for 4 months counts as any sort of relationship – quite the opposite), has broken down on my part. Rather, Dr. Newall effectively terminated any “relationship” by his neglect.

That suggests very strongly that my complaint has been binned without even going through the normal procedure. Frankly, I expected nothing different.

I also take an extremely dim view of being blackmailed – submit to our tests or we won’t medicate your condition cannot be interpreted any other way – and I shall be seeking legal advice on this matter, among others.

As for the tests themselves, I reject the stress echocardiogram on the grounds that it is potentially dangerous. 1 I know all too well how my heart malfunctions when stressed, having lived with the problem for almost 18 months – I go to great lengths to avoid it ever happening again, to ensure I go on living. I am certainly not going to run the risk of having that induced.

A year ago, perhaps I would have, but I’m very much sicker now than then. I’m far sicker, in fact, than I was when I saw Dr, Newall (as I believe I told him I’m going downhill fast),** and I’m not about to run the risk of being made – or dying – neither are impossible. There are other, far safer options. A CT scan, for example, as originally suggested by Dr. Newall.

**Though this has stabilised somewhat with the change from Candesartan to Losartan (12.5mg), as the quality of generic Candesartan became abysmal, needing me to take twice the normal dose for less than the same effect.

I have no objection, in principle to either the 24-hour mobile ECG, though as I’m pretty much immobile I am unsure how valuable it might be, or to the overnight O2 monitoring. I suspect that this is because I mentioned that I wake up breathless at night. If so, then as I have COPD and heart failure it would be a minor miracle if I did not wake up breathless in the night.

However, if you wish to proceed with those two tests – and only those two – I have no objection – please advise.

Also in my letters to Dr. Newall, I posed a question – how could I go into APH in January last year, and emerge 4 days later with a life-threatening heart condition that I didn’t go in with? I think that needs an answer, because aortic valve calcification doesn’t develop that fast, nor does heart failure – also diagnosed by Dr, Leong’s team but not recorded (along with very much else – I have an unredacted copy of my notes – they are a disgrace).

Getting back to the question of medication, while in APH last January, I was told that Digoxin had been prescribed for my heart failure – I never got it. No surprise – many of us on Ward 32 didn’t get our prescribed meds, and I’d love to know why. BUT – if it could be prescribed then, without the slightest suggestion that any testing, hazardous or not, was needed, it could surely be prescribed now if there was the will, and could have been, months ago, if Newall hadn’t decided to pretend I didn’t exist.

I maintained channels of communication with Newall – he was the one that chose not to respond. Despite Ms Goodfellow’s bizarre and deeply prejudicial assertion, which conflicts totally with the facts, communication broke down at Newall’s end, not mine.

And for the record, Newall’s letter of May 7 was printed May 18, then clearly held back on receipt of my complaint so that he could respond to it, as evidenced by the tone of his letter, and by the further 19 days it took to reach me (if, indeed the dates have any basis in reality at all). And please don’t bother giving me an argument – the letter has been widely circulated, and the consensus is that it IS a reaction to my complaint.

Mrs.Xxxxx, I apologise for my anger, it’s not directed at you, as you appear to have just had this dropped in your lap, but at the moronic people at APH who feel it’s perfectly fine to leave a patient with a potentially terminal illness 2  in the wilderness for the better part of 5 months. Which, frankly, beggars belief

Regards,

Ronald W. Graves.

 

1. The Lancet, Volume 344, Issue 8931, Pages 1190 – 1192, 29 October 1994

doi:10.1016/S0140-6736(94)90508-8Cite or Link Using DOI

Safety and tolerability of dobutamine-atropine stress echocardiography: a prospective, multicentre study

E Picano *, W Mathias , Pingitore A , Bigi R , Previtali M , Echo Dobutamine International Cooperative Study Group1

Link:  http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2894%2990508-8/abstract

 

2. Aortic Stenosis, Author: Xiushui (Mike) Ren; Chief Editor: Richard A Lange, MD

Link: http://emedicine.medscape.com/article/150638-overview#aw2aab6b2b5aa

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4 thoughts on “Response to Arrowe Park, who won’t be happy. Too damn bad!

  1. Hi Ron,
    Another brilliant letter, I doubt very much that APH will appreciate it. I, admire your tenacity and strength and your so ill, it give hope to the rest of us.

    Fred.

    • Someone needs to take a stand against these Nazis, Fred, it might as well be me. If more people did, though, they’d be forced to sit up and take notice.

      My neighbour, many years ago, was about my age now, maybe a bit older, and also seriously disabled by heart disease, and every few months they’d make her go to the hospital, where they stuck her on a treadmill!! She could barely walk round her damn flat.

      There was no possible way that this was for her benefit, it was just to provide data on the progress of her illness, for their benefit. She never got any new treatment as a result. As far as I’m concerned, now as then, data collection is never justification for putting someone’s life on the line.

      I initially complained that the slightest exertion – carrying a not very heavy bag of shopping in from the car-park, for example – made me feel as if I was dying, and I have little doubt that if it had gone on for longer, it would have, or put me in hospital at the very least. Yet now they want to chemically induce that very same condition, which I now go to great lengths to avoid. Never in a million years would I consent to that!

      And I’ll never understand why Arrowe Park – are other hospitals like this? – have no idea how to accommodate a disabled patient without a major battle. It’s insane.

      Ron.

    • No response so far (2 and a bit working days). I have a very strong feeling they’ll ignore me again. Of course, if I get a CT scan it’ll be a major win, and proof they could have done it months ago, so I’m not putting money on that – though if they refuse they’d better have a damn good reason.

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