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?”
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?