Negotiating with the nurses – a farrago of lies and bullshit…

Well, the nurses, and their manager, have been, and I got what I wanted, but only by dint of actually snarling at the buggers, as I could see the dressings I need slipping away from me.

But I finally, got their agreement – and they also confirmed that the hospital had been in touch, when I was discharged in November to tell them that the treatment they had instigated, with Aquacel Ag (silver-impregnated), dressings, had to be continued. The staff nurses and the auxiliaries had previously lied their arses off denying any contact from APH about my treatment.

But when I really lost it was when the manager, in an attempt to pull back from committing to Aquacel Ag, trotted out the bollocks about the dressings sticking to the wound, and how detrimental it is to the healing process.

Now I don’t shout when I’m really angry, nor do I often swear, but by Christ you know when I am. And I was furious at this obvious attempt to weasel out of supplying the dressings. I said “Look, this is my leg, and I know exactly what’s going on down there. Everything sticks when it’s left on for three or 4 days at a time. Aquacel sticks, Atrauman (their preferred dressing, which doesn’t work), sticks, Xupad (absorbent pad), sticks EVERY. THING. STICKS! Aquacel is NOT unique in that respect. Are we now clear about that?”

Grudgingly “Yes.”

So, the deal is they’ll attend as before, Mon and Thurs, phone call half an hour prior, and they will supply 5cm Aquacel Ag dressings. I said that as well as establishing the schedule, they need to put a mechanism in place to make sure in works. Not well received.

Oh, and the fact that nurses all too often don’t turn up is apparently my fault for not phoning. No you idiot, it’s your department’s fault for not ensuring that nurses are properly assigned and that they keep their appointments. And that if they don’t come in for their shift, that agency of bank staff take up the slack. Finally, if all else fails – and I did get an agreement on this point, patients must be told if nobody is coming.

Then my scheme manager (I’m in a supported flat), who’d come as a witness, had to leave, and then the bullshit and the lies kicked in.

First the manager tried to tell me what a fantastic job the nurses have done. Sorry, no. What the nurses have done is changed my dressings on a daily basis for most of the past year, and admitted, also on a fairly regular basis, that it was frustrating as they were making no progress, just in effect, treading water. Which is true, largely because there was no coherent pattern of treatment until APH got involved.

I pointed this out, only to have the auxiliary nurse (who’d arrived to re-dress my leg), look apoplectically furious and deny everything! Yet she, and her colleague, were the ones who’d been most frustrated, simply because I’ve seen them more than anyone else. There is no shame in admitting that you’d been asked to do the impossible.

She also lied about having told me, on January 6, that a superior had told her and her colleague to come straight to me, and not bother phoning, as we’d arranged. Or she lied ON January 6, to me. It’s impossible to know, but lie she did.

Then the manager chimed back in, trying to tell me the silver dressings would poison me if used continuously. The dressings are the size of a pair of festive postage stamps – they wouldn’t poison a dog!

They trot out this line when they don’t want to pay for stuff over a long period. Previously, they’d used a potassium permanganate soak on my legs. Effective, but never used for longer than a week because “all the skin on my legs will slough off!”. The purest, triple-distilled bovine ordure. There is no research to support that, nor, when I eventually got them to continue it for nearly three weeks, did anything untoward happen. My legs dried out nicely, though.

Every treatment that has brought about an improvement has been through my insistence or my work in pre-treating my legs before the nurses arrived, or, latterly, by APH moving the goalposts and insisting on Aquacel Ag dressings.

I know I’ve said the before, but it’s well worth repeating – when the nurses first arrived on the scene last year, I told them APH had fixed the leaks in my legs in April, and would they please contact them, find out what they did, and do it again. No, we can’t do that.

So I endured a year of hell, in constant and unbearable pain, and massive bouts of infection culminating in MRSA. Until APH again intervened in November, and it’s taken until now, with lots of anger on my part today, to make that stick and stop them pissing about with dressings that actively make me worse.

And even before they left they were making noises about limiting the Aquacel Ag, so the war isn’t over, just this battle.

They are obsessed with compression. If my lesions don’t heal in three weeks, or 12 weeks, or some other probably fictitious period, depending on who’s bullshitting me, they are deemed to be ulcers and compression is the only remedy. Except it’s not – it’s just that their minds are totally closed to the possibility that another remedy might just be worth trying, nor will they admit that compression often doesn’t work.

And compression in this instance means my leg would be tightly bound from toes to balls – how the hell am I supposed to function like that?  FFS, I can’t walk now without falling (the most recent event this morning). And how would I use my wheelchairs, or even get into bed with one leg unbendable? Or even dress myself? Anyway, I made it quite clear that compression is off the agenda – been tried twice, made me worse twice – that’s enough.

Incidentally, the nurses run an ulcer clinic every Wednesday afternoon, where poor saps with chronic, unhealed, leg ulcers go to have them re-dressed.

If compression is so fucking wonderful, why the need for the clinic?

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10 thoughts on “Negotiating with the nurses – a farrago of lies and bullshit…

  1. Jeez Ron – sounds like a hell of a day!
    What a shit load of nurses you have, and the manager sounds abysmal.
    I know you can buy the dressings but they should supply them – and if they are moaning going out the door then you can guarantee they are going to stop them soon. It’s twice a week, not a daily occurrence for the Aquacel Ag dressings to be applied, so what the hell are they on about poisoning you? And besides, it’s your choice! Having the dressings that you know are doing your legs good, and have also been prescribed by APH, has taken away all that awful pain that you were going through. This in turn has helped your health in other ways, you’ve become a little bit more active, have had times that you can cook etc. It shows that the treatment from APH is the RIGHT treatment for you regardless of what the nurses and the ways that they do things may say or do! Obviously it’s certain that the nurses all need to go to yearly courses to see what things are now being used for treatments for ulcers etc, and what is now old fashioned!
    Stick with it Ron and stick the finger up to the nurses!
    Jay xx

    • Meant to say, have you tried out honey on the wound sites? At the very end of my treatment, before the amputation, the specialist nurse was using honey direct from a tube rather than the honey patches. Although it didn’t close the wound it made a damned good try 🙂

      • I’ve thought of trying Manuka honey, but I’m doing so well with the Aquacel Ag I decided to stick with it, especially as it’ll be free from now on! £30 for 10 dressings is just a bit steep.

    • It occurred to me when they’d left, I’m sure the manager thinks I’m making all this fuss over one missed appointment – clearly the complaints I’ve made to the staff nurses in the past have gone no further! And the staff nurse who was here today lied about APH contacting them about me – one more wrong word and I’ll make sure the whole goddamned world knows, including her boss.

      And she sat there and said to me Why are you so angry? – as her boss was trying to bullshit me out of the Aquacel Ag. What the hell did she expect? Anybody would be angry, especially with all the lies that were coming to light

      This is the only thing APH have done right in 30 years – I’m not going to let these clowns screw it up.

  2. must admit Ron. was good to hear you say something nice about APH for a change. but all this fuss about twice weekly dressings with the stuff that is obviously doing what it should.. are they blind? cant they see? im a big believer in taking pictures of leg /arm wounds of whatever nature that hospital/district/ GP staff are treating, from time to time. as soon as their is visible improvement or deterioration. to compare. plus in case of complaint. to show authorities. and all these new things they keep trying when older remedies may have worked much better in the past…(probably new ones are more expensive cos only big pharma benefit from them after all so they are told to use them). not that some of the newer dressings etc cant be as good..its just finding which is best for you.at any given time. our bodies change as we age as you know, and treatments may also need to change accordingly. but least they can do is try the ones that worked before, before trying new stuff they dont know the reactions of

  3. Good for you, it must have been totally exhausting to go through this but,,,you have what you need. At least after this there can be no more confusion as what treatment to use – Congratulations for sticking to your guns.

    All best as always xxx

  4. “And she sat there and said to me Why are you so angry?”

    I’m sure at the point at which the nurse said this I would have either punched her or made it very clear that the complaint would be going higher up, maybe both. This kind of passive aggressive crap is becoming a very handy tool for some of the incompetents who exist and thrive in the NHS to use whenever a patient complains about poor treatment. After reading your account Ron, it looks more and more like they are actively trying to bully you because you have called them out on their BS.

    Your proof of their incompetence and mismanagement is that your legs have improved with the right dressings and your own method of managing the dressings. They will never forgive you for this.

    It’s a myth that bullies back off if you stand up to them. Alas. They usually ramp up their activity. Before long, you may see the nursing staff (and your GP) complaining that it is they who are the victims here. It is they who are being bullied. Classic bullying behaviour.

    The fact that they started with the crap when your witness left speaks volumes.

    I don’t suppose that you covertly recorded audio of the meeting? Might be an idea if there’s a next time.

    PALS used to be independent but now they are not, but they are the only official route for complaints. They are basically a complaints management system, but only they can escalate complaints up the line to the CCG or the Head of the Trust.

    What’s your local MP like?

    Your treatment is beyond despicable. When a patient has, because of system failure and inadequacy, done everything they can do to manage their condition, despite what appears to be sabotage from the professionals and still done so well. For the professionals to then become actively adversarial when they have been caught out in their lies and poor behaviour, provides a perfect snapshot of a broken system run by those who have no compassion and who should not be working in a job where they have contact with living beings of any species.

    These people have lost sight of why they are in the job.

    Sending spoons and good wishes

    Lucy

    • I’ll get back to you on the rest later – hospital appt this morning – but “Your proof of their incompetence and mismanagement is that your legs have improved with the right dressings and your own method of managing the dressings. They will never forgive you for this. ” is exactly right.

      If an idea doesn’t come from the nurses- and they have no new ideas at all! – then for them it has no merit. Doubly so for ideas that come from the hospital.

      OK, I feel the same way about the hospital most of the time (but my feelings don’t put anyone else at risk), but on this subject the hospital has it right.

      And the only reason I didn’t drop that nurse in the shit is that she has done a lot for me. But after yesterday, she’s used up my good will!

  5. I agree with Lucy on the audio. You know that my amputation, and my mental health problems all started with that one mistake, (and it was a huge mistake), by a surgeon who is so far up himself he will not apologise to me.
    John (hubby) – knows just how scared I am about hospital, doctors and even dental appointments that I have so he bought me a Dictaphone for Christmas. I am going to use it to all appointments, discreetly of course, as well as any telephone calls that I receive, then download them onto my computer. It may not be the best idea but it makes me feel better already just knowing I have it.
    In your situation you could record each time the nurses came, right in front of them if you feel like, I bet you would see a change in their behaviour 🙂 You could be the Grumpy Old Git who is also Paraniod – ‘cept you’re not!

    • Yep – I’ll do that next time – downloaded an app. Might do it routinely with every visit.

      Oi! – not so much of the old!

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