The Community Nursing Service is letting me down badly…

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.

Nurse: OK

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.


15 thoughts on “The Community Nursing Service is letting me down badly…

  1. Plain WRONG – I agree a letter of complaint is your only recourse – maybe send some of your posts and the many informed comments?!

    All best as always xxx

    • I’ll probably wind up on somebody’s shit list – I don’t want to drag anyone else in, too, especially if they might need the CNS at some point.

      I’m pretty sure I know who’s behind all this, too. There’s one particular auxiliary nurse who exerts way too much power – I’d love to know why, and why she’s not slapped down by her superiors. Last time she was here she almost got thrown out for interfering in a discussion I was having with her boss about my treatment – who let her! Everything’s gone to hell since that day. She also announced – to her boss – that she’d discharged 2 of her boss’s patients. That’s surely overstepping the mark for an auxiliary, yet it went entirely without comment – not so much as an “I’ll talk to you later!” Just mute acquiescence.

      It’s also possible that the nurses have read my blog, and taken exception to it. From what I know of them, it’d never occur to them that I’m right.

      • If they have read your blog Ron then I hope that they are suitably ashamed of the way they have behaved as nurses! As for the auxiliary with the superior attitude, she sounds as though she is a bully and can only be happy when she is making people’s lives a misery, and bullying her superiors. Personally, I’d slap the bitch across the face, that’s tell her what I thought about her treatment of you as well as her bloody attitude. She’s probably end up crying ‘cos bullies don’t like to be told or to be bullied back!

  2. I have the same issue in Wiltshire. Couldn’t get dressings delivered, apparently I was destroying the budget with my requirements (a prescribed need not a want), so no dressings ordered. Had to use incontinence pads. No gloves are ever used by my nurses. A cursory hand wash if I’m lucky! Had cellulitis 4 times this year and MRSA too. I HATE being sick in this country. When I have the strength it makes me downright angry. When I dont I stay in my hospital style bed(like yours) and sleep and sleep

    • Ask for Zetuvit Plus pads. They’re about the same price as the useless Xupads, but far more effective.

      Prior to Zetuvit, Flivasorb pads were costing £45 a day and my GP just wouldn’t pay.

    • That is completely wrong SpoonieMama – they have to give you your dressings, they are legally obliged to. It doesn’t matter about budgets etc. they have to supply you with what you need. I wonder how many other people they have said this to and got away with it? If your GP or nurses won’t supply the items on prescription then get in touch with the local pharmacy and ask what you can do, and also get on to your MP about it. Budgets do not stand in the way of any medications or dressings!

  3. Hi Ron. I was told that I could only have the Aquacel Ag and any silver dressings for no longer than 6 weeks?! I also had tubes of silver cream that you had to keep in the fridge and each one had to be discarded after a week/10 days. Something to do with too much absorption in the skin.
    As you know, it was for the wound that never healed and various treatments where tried on me, but I do remember some of the creams and dressings. I had to admit that the silver did help but then again, as I said, the wound never healed as the infection had gone far too deep and was eating away the bone, so off it came!
    You can actually put a prescription in for yourself for the dressings, bandages, creams and washes yourself if the nurses are too bloody lazy to come to you. I know you have trouble with your GP as well, but he’s not going to be happy if he has to write out a prescription for someone who is supposed to be doing their job and he ends up doing it!
    Hope you get what you need before Christmas and plenty of it. I’m disgusted that the nurses don’t do all of the job instead of leaving it to you. Ask for larger gloves to be sent to you as well.
    Actually, thinking about it, sometimes it is better to do things yourself at times as the nurses have more germs on them and are a walking time bomb! At least you are used to your own germs and those around your home!
    Jay x

    • Doing all the dressing prep was my idea – the nurses are just too bloody brutal but, as always, they knew best (yeah, right), and for months they wouldn’t listen to me. Then one day I told the hamfisted nurse exactly how she should treat my legs/feet so she didn’t hurt me (even having cream applied would make me scream at that point), and that I wouldn’t tolerate anything else, but she wouldn’t listen and I finally lost it and came very close to thumping her!

      Then they listened!


  4. Im livid this is absolutely NOT acceptable -= considering you should be A: having direct payments for a PA to ensure your basic needs are met like eating and supportiung you and the social services have failed you big style. now community services are failing you big style.

    do complain and make sure you send a copy to your local healthwatch and also your CCG you commsion this infact i would go as far to say this is an adult safeguarding issue as you are in a “vulnerable group” and therefor at risk

  5. The lack of treatment you get, disgusts me Ron, it really does. These nurses should be ashamed of themselves.
    Take care xXx

  6. I think your community nurses should be stood against a wall and shot – by their patients!
    This is appalling, you have no fall back for anything – they are supposed to look after you, as a whole person and not just infected legs! Admittedly they are starting to get better and that’s the way you want it to stay. You can’t go back to how you were just a few short weeks ago.
    You find it better to do the prep work and I truly can empathise with you on that, but you also need the dressings etc and you can’t get them yourself, plus, they should be looking at your legs and your health as a whole by coming out and seeing you.
    I know that they are overworked, but that is not a concern for you, your valid concern is having these nurses treat your legs and your other health issues.
    I seethe with rage with things like this. I was so very lucky with my district nurses and the doctor as well as the specialist nurse in the surgery – who I went to twice a week when I could get round a bit better with the zimmer. But then, I’m living in Scotland and our NHS is completely different in so many ways to England.

    • Recently, I’ve seen a couple of nurses that haven’t been around since I was at my worst, and their reaction is always the same – Wow! Look how great your legs are! And my reply is always the same too – Yep – I did that!

      Not letting anyone else have the credit when I’ve done all the work.

    • If my legs did get worse again, I think I really would kill myself – I just can’t go back to that level of pain, and the stink, not to mention the disability that goes with it. At least, at the moment, even though I can’t go out, I can function fairly normally and without much pain.

      The odd thing is, my left leg, which is completely healed, still causes as much pain as the right, which isn’t yet healed – I don’t understand that – there must be something happening inside my left leg that I’m not aware of. On the whole, the pain is tolerable in either leg, except for breakthrough flares – and by the time I think Shall I take Oramorph? it’s gone again.

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