By which I mean that, of late, they have become utterly useless. Much of the time they don’t even turn up at all.
(CNS – aka District Nurses.)
I had the usual phone conversation with a nurse this morning:-
Nurse: I’ll be with you in an hour – that OK?
Me: No. Because the nurse I was expecting yesterday didn’t turn up, I changed my dressing myself last night, so I don’t need anyone today. I will need someone tomorrow, though, if you’d pass that along.
Thirty seconds later she’s back on the phone.
Nurse: Can I come this morning?
Me: There’s nothing for you to do, I’ve done it. (The deal is that they phone, I remove the old dressings, wash my legs with an antibacterial solution, and remove as much dead skin as possible, so all they have to do is apply fresh dressings. This is why it’s no big deal to do the whole thing myself – I already do the hard part.)
Nurse: Only we don’t come out at the weekend, except for emergencies (a flat-out lie – they provide a 7-day service;** or not, in my case!)
Me – extremely pissed off over the lie: Forget it then, I’ll do it myself!
**As they do over the Christmas period too – this is what their website says:- “Over the festive period, our Community Nursing Service will be running as usual.”
“As usual” is round the clock, 7 days a week.
Not surprisingly, I’m beginning to take all this crap just a little bit personally.
I’d assumed that their repeated failures to attend, or their increasing tendency to do a rushed and sloppy job when they did turn up, were down to plain, old-fashioned, incompetence and poor patient care – now I suspect it’s deliberate, though the reason eludes me – just what do they hope to achieve? So, they lie to me about weekend calls – what the hell happens over Christmas, then? Were I to ask, would they also lie?
On Wednesday, a normally reliable nurse phoned while I was busy vomiting (pretty sure the cause of this constant nausea and puking is my heart failure getting worse), so I asked her to give me a miss and come Thursday instead. As I’ve said, no-one showed up – I could easily go a whole week without seeing a nurse at this rate, which is unacceptable. And dangerous. Not least because I have only a couple of sterile dressing packs (which contain gloves, scissors, and an assortment of odds and sods), and anyway, the gloves are far too small for me, even though I have small hands, so the risk of infection, while reduced by using sterilising hand wash, remains very real.
It’s worth reiterating – lymphoedema is incurable. It will need attention, to some degree, as long as I live and yet, after less than a year, the support system is falling to pieces. It simply is not good enough. Nor is the problem unique to me – a neighbour, on the floor above, has the same nurses, and is also being buggered about.
In addition, should my leg become infected, as it’s been prone to doing, and I develop septicaemia, it could kill me. Given how fragile my health currently is, it almost certainly WILL kill me should that happen. And yet the nurses, on the whole, simply couldn’t give a shit.
And today, a nurse I don’t know and who, of course, doesn’t know me, is happy to let me attend to my own dressing changes, with no idea whether I’m competent to do so (I am – I’m a bloody sight more competent than some of the nurses – but she doesn’t know that – to her I’m just an angry voice on the phone). Nor does she know whether or not I have the necessary dressings – she didn’t bother asking. I do for now, but I’ll need more soon.
Then there’s the ongoing problem with adequate/appropriate treatment. The hospital doctor told me he’d notified the district nurses that they were to continue using the Aquacel Ag silver-impregnated dressings which had yielded such dramatic results. They said they’d had no such instruction, and refused to continue with the Aquacel Ag.
Their excuse was that the silver dressings stuck to the wound, causing it to reopen every time they were removed (even if they are soaked off, it still reopens the wound). As excuses go, that’s bullshit. Every bloody thing that comes into contact with the lesions on my leg sticks as tightly as if it’s been welded! Aquacel is no different, in that respect, to a plain, absorbent, pad, which is what the nurses prefer.
Why, I know not. They’ve seen the dramatic improvement brought about by the silver dressings, so why do they have a problem with them? Can it be professional jealousy – the hospital did what they could, and should, have done, and they resent it? Certainly looks that way to me. They have used silver dressings, but NOT the same type, and not for extended periods, which is what’s needed.
Or maybe it’s cost – they are ferociously expensive. But – and if it is cost they’re being short sighted – they are only needed for a short time. Used properly, they have the capacity to cure my lesions, at which point I could be safely discharged. The way they are currently pissing about, though, things could get worse very quickly and, indeed, appear to be doing so.
I have half a dozen silver dressings, 3 very small Aquacel Ag (just barely big enough), and three of a different, but similar, and larger, brand. Changed on alternate days that’s enough to take me through Christmas and towards the new year, by which time the nurses had better start getting their act together, or by Christ I’ll know the reason why.
In fact I’ve located their website, which has both phone and fax numbers (I’ve tried, without success, to get the fax number out of the nurses). I’d have preferred email as I could have asked for a read receipt (yes, I know they’re not infallible), which I can’t do with a fax, but what the hell, as soon as I’ve published this I’m going to write a letter of complaint – I have had enough of being fucked about by people who claim to be helping me. Of course, such a letter could have a detrimental effect on the service I should be receiving. I’ll have to take that chance, as things can’t be allowed to go on the way they have been.
The website says (among much else):-
Our nursing staff will:
- Assess what your health needs are and agree your plan of care with you.
Which simply isn’t true. Nothing was agreed with me, rather, it was imposed upon me. OK, I accept that when they were coming every day there was nothing to agree. But when they decided to cut back to every other day, or longer, they didn’t discuss it with me, they told me what they were going to do. Well, sometimes – on more than one occasion they’ve made changes and simply couldn’t be arsed telling me. And it’s never worked – every time they’ve cut back, I’ve got worse, just as is happening now, but they just won’t learn from experience.
That, too, has to change.