Letter to the Community Nursing Service

Note: Apparent discontinuities in the text are where names have been redacted. That’s because my reason for posting this is not to embarrass anyone, but to make it clear how badly the service has broken down in my case, and put me in a potentially dangerous position. And also in the hope that others might find it informative, or even useful.

As I’ve explained previously, I’ve dealt with the problem of nurse brutality – and no, I am not over-egging the pudding – by taking on some of their duties myself. Dealing with absentee nurses is a job for their management, as is seeing that I get the hospital-recommended dressings.

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Community Nursing Service,

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January 15 2014

Attn. Ms.  (If unavailable, please pass to the most senior staff member present)

Dear Ms. ,

Half way through the first month of a new year, and the problems of the nurses’ failure to attend that I thought I’d resolved in my conversation with Ms.  on, I believe, January 2, still remain. Increasingly, I feel my position, in relation to the District Nurse service, has become untenable. It’s certainly intolerable. And highly unprofessional.

In recent months the service I have received has become increasingly irregular and undependable, so much so that I was forced to start changing my own dressings when nurses failed to turn up. Of course, this made things even patchier, as by the time I eventually got my phone call to say the nurses were coming (see below), I’d already done it myself the previous day.

With Ms. , I agreed that starting January 6 (the following Monday), nurses would attend Mondays and Thursdays, phoning me prior to arrival to give me time to remove the old dressings, wash my legs, using Octenisan, and debride as necessary, so that all they had to do was inspect and re-dress.

This system had previously worked very well, saving me a lot of pain and the nurses a lot of time, until it fell to pieces towards the end of 2013.

It got so hopeless that one nurse called to say that she’d be here “sometime today” which is no help to me at all. The same person also told me you don’t have a weekend service except for emergencies, which I know from experience not to be true. I take a very dim view of being lied to. I did, by the way, confirm with other nurses that you still offer a 7-day service for those, like me until relatively recently, who need daily care. It was when my daily care ended that this problem developed, and it still continues.

On January 6, despite the agreement, the nurses arrived, unannounced. When I asked where my phone call was, they said they’d been told not to bother. Seriously? Do you think that’s appropriate? And yes, I was angry – who wouldn’t be?

On Monday it got worse. Nobody came, nobody phoned, and there is no excuse. So I wasted an entire day. I never know when the nurses are coming, not even if it’s morning or afternoon, so until they’ve been, normally at some point during the morning, I can do nothing in case they come while I’m in the middle of it. If they don’t come, or phone, at all, then nothing is what I get to do all day, and it simply is not acceptable.

I understand that you are short-handed, but the patients should not suffer as a result. I know, from friends who are nurses, that solutions to staffing problems are available. Frankly, and I’d made this point to Ms  after the previous no-show, the fact that nobody could be bothered to pick up the phone and tell me you had a problem beggars belief.

I changed my own dressing on Monday, by the way, should anybody actually care. Looking good, too, having reverted to Aquacel Ag.

There’s another problem too. APH, when I was an in-patient in November, used an Aquacel Ag dressing, and the improvement was dramatic and rapid (the first dressing covered my leg from ankle to knee; now all I need is a 5cm square one, a massive and undeniable improvement.

When I was discharged I was told that the treatment must continue and that they had notified your department to that effect. This met with a denial from the nurses. Somebody is not being honest with me. I don’t know who.

The Aquacel Ag dressings were used very briefly by the nurses, before I was told they were unsuitable as they stuck to the wound, causing damage every time they were removed. The fact is EVERYTHING sticks to the wound! They would not stick as tightly if they were changed more often – see comments  below re this. Aquacel Ag was no different to anything else in that respect. However, without the silver-impregnated dressings I began to deteriorate.

So, when the service started getting patchy I decided, having found a small supply of Aquacel Ag and Atrauman Ag in my dressings box, that I would use them – starting with the Aquacel – and once again the improvement was dramatic. However, switching to Atrauman Ag brought back the deterioration again.** And I repeat – both stuck with equal vigour, the only difference was that, with the Atrauman, the healing process wasn’t just halted, it was  reversed.

**The fact that both contain silver is irrelevant; the respective formulations are otherwise quite different, and that matters. Apparently, it matters a lot in my case.

In my discussion with Ms.  on Jan 2 I told her I’d been using Aquacel Ag with considerable success, but at that point I had just one dressing left. For reasons that still elude me, Ms. insisted on changing to Atrauman Ag, to my considerable detriment.** Tiring of the suppuration and the pain (little pain with Aquacel Ag and no suppuration, merely a little blackness from the oxidation of the silver content, with Atrauman I was back on Oramorph and the discharge was rainbow-hued), I decided to take matters into my own hands.

Last week I bought a box of 5cm Aquacel Ag, so was able to use what I had, plus subsequently, another one  (or , below), gave me, and once again I improved almost immediately, and continue to do so. It’s patently obvious – and I have photographs to prove it – that APH was correct, and that Aquacel Ag is what I need.

I pointed this improvement out to the nurse on Thursday last (Jan 9), the last time I used Atrauman,  (or possibly  – sorry, I don’t know her surname, but she’s  if that helps), and she said there would be no problem reverting to Aquacel Ag (because I can’t afford to continue to buy my own, nor should I have to), and she would pass on the message that day.

It has also become crystal clear that the dressings need to be changed on alternate days – 4 days is too long – by that time the dressings – of either type, are stuck too firmly, even with Aquacel Ag the pain is worsening. After the year I’ve had I really do not need more pain in my life. I also believe that, while the lesions, even though they’re diminishing, are liable to infection while they are still wet, if left too long.

To sum up, APH were right – the lesions were drying out with Aquacel Ag, but using Atrauman made them suppurate again, and become painful. They’re improving again now, but are still wetter than they’ve been in the past. They are pink and clean and odourless, however, and I am confident that with the right dressing – Aquacel Ag – regularly renewed, they can be kept that way and will ultimately heal, as they are showing clear signs of doing (one is already scabbed over and dry, and another has greatly diminished – two out of a tiny group of 4, so I have hopes for the others).

I am fully aware, incidentally, that your staff have a preference for compression. I, however, do not.

It has been tried twice, once by Ms. , once by the Clatterbridge clinic, with the same result – a considerable and extremely painful worsening of my condition. Clatterbridge, in fact, did it despite the fact that – from the smell – my right leg was infected. This, based on everything I’ve read, and been told by the nurses, should never be done. It was, though, my left leg that went bad on me, a lesion the size of an old sixpence going, in the space of a weekend, to the size of my hand.  The results in both cases are – or should be – a matter or record.

That’s just en passant, I mention it merely so we don’t waste any time arguing about it – compression is not on the agenda. The ongoing unreliability of the nursing service is, though, and it really cannot continue.

I have considered offering to do the job myself (which I can, perfectly well, on an occasional basis, not sure about all the time, as you’ll see), but you would need to keep me reliably supplied, something else which isn’t happening with any regularity. However, while I have no real objection to this, the facts that (a) I shouldn’t have to, and (b), that I am seriously ill, militate against it.

There is a great deal more wrong with me than my lymphoedema  – 9 separate and serious conditions (more if one counts the components of COPD individually), some of them life-threatening, plus a few more minor, but no less troublesome, ones.

At the risk of being perceived as melodramatic,  I do not believe, unless things somehow radically improve, that I will see out 2014. And I do NOT need that possibility made worse by my legs becoming infected again, as they were for much of 2013 (eventually with MRSA), and which the current level of neglect is unlikely to prevent.

I hope we can resolve this issue because, if we cannot, I shall not hesitate to take it further. I’m sorry to be confrontational, but nothing else is working.

Yours sincerely

Ron Graves.

PS: Should anyone be moved to call on me as a result of this letter please note I should prefer a written response, for fairly obvious reasons, and will not discuss it by telephone at all.

I will also be busy all day today and out on Friday (at Clatterbridge). I shall, of course, be here all day tomorrow. It would be nice if the scheduled nurse was, too.

PPS: Sorry, but I can’t receive incoming faxes.

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6 thoughts on “Letter to the Community Nursing Service

  1. Well said Ron – I’m sure you have covered all your bases there.
    Now, let’s hope that they take some notice of it! I don’t see any reason why they can’t understand what you are telling them and the reasons why you need to be so careful with your legs. To go back to the way you were last year would knock you sideways, and probably kill you!
    Fingers crossed that you get a reply soon, and that it’s the reply you want.
    Jay xx

  2. A very comprehensive and restrained letter Ron. I hope they respond with some action and a sensible course of action at that.

    Best wishes
    Lucy

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