Pushing me to the edge all over again…

The District Staff nurse phoned the GP surgery this morning, telling them I needed a home visit (got a temp of 37.7C) – that won’t happen, I said, it never does – at best I’ll get a phone call – so she went round in person to impress upon them that I needed a real, live, doctor! And soon.

Didn’t get one.

Sometime after 15.00 I got a phone call from their reception asking if a doctor had been – well, no, but don’t they bloody know?

Later, I got a call from one of the doctors – who doesn’t know me at all, but she has announced her intention to bugger up my pain meds without giving a toss about how much damage she’s doing. And I think I’m on safe ground when I say that she appears to have not the slightest idea how appalling the pain of lymphoedema can be. If she wants to know she can ask my neighbours how often they’ve heard me screaming in agony, especially if I have to get out of bed in a hurry. Or the nurses for that matter – removing dressings that have welded themselves to raw flesh is as much fun as it sounds.

So, I’m writing this blog post because at this rate they’re going to tip me over the edge. If they succeed this time, I want everyone to know why, because I’m starting to take this very, very, personally.  I think they’re intent on pushing me into a breakdown (which feels very close right now), or even suicide – they almost succeeded a few months ago** – or into leaving the practice, and I don’t think they care which.

**It feels much more deliberate this time. Last time none of us were expecting pain of such horrendous severity. No excuse this time. They know how bad the pain is, and they know what it needs to treat it – the just won’t do it.

There are no names in this post, but if I reach the point where I simply can’t go on – if they succeed in pushing me into suicide – there sure as hell will be before I go.

And even if I dodge that bullet, their consistent refusal to make a home visit when asked – and bear in mind I’m housebound, I don’t have the option of going to them – could conceivably kill me, or at the very least cause me to be very much sicker than I need be. For the record, this is the home visit policy:-

These are at the doctor’s discretion. The doctor will visit only when the patient is so seriously ill that they cannot possibly attend surgery. All home visits must be requested before 10:00. 

Fair enough, but to extend that “discretion” to disregard housebound patients says, loud and clear, “We don’t give a shit about you!”  Unless, of course, it’s just me they have it in for? True, I have had a few home visits the last 6 months (most, like today’s, at the instigation of the nurses, not me), but, but prior to that I averaged one home visit a year for the better part of 30 years – hardly excessive considering how bad my health is.

There’s something strange going on, too. About three weeks ago my legs were swabbed, and the resulting gunk shipped off to the APH Path Lab. A few days later I was prescribed Flucloxacillin, an antibiotic that has consistently proven utterly useless, a fact which has been repeatedly reported to the nurses and GPs. And I don’t care what results the Lab gets – human beings are not Petri dishes and in vitro results can’t always be replicated in a live subject.

However, today I was told that there is no record of a swab being processed at that time. I don’t believe that because someone issued the script for Flucloxacillin based on results from the Path Lab – either someone has screwed up my records, or I’m being lied to now, or was lied to then. I have no idea which, but I am utterly sick and tired of these endless fuck-ups. If, indeed, that’s what they are. Part of me – a large and growing part – thinks this is all quite deliberate. I just don’t know who’s behind it, or why.

I just hope, when my hospital appointment comes around that, as a vascular surgeon, the doc has a more enlightened attitude to pain control, and that his attitude towards me hasn’t been poisoned by the bastards at the GP surgery.

If the latter proves to be the case, then there is little point even in carrying on – I might as well pull the plug and have done with it, as I simply cannot live with this level of pain without the drugs to control it.

It really is that simple.

I do, though, from a previous drugs cock-up, have supplies, sent to me by friends**, of Gabapentin (needs treating with caution, but effective), and Tramadol (allegedly risky with morphine but took it for weeks without problems). They’ll keep me going for a little while, longer if I can spin them out. There’s no getting away from the fact that, without adequate supplies of morphine – Zomorph and Oramorph – I have no future.

**Yep, I know all about the dangers of taking drugs intended for other people. I’m also not an idiot, and Tramadol is Tramadol is Tramadol, no matter whose name’s on the box.

The first thing I have to do, every day, is shut down the pain that overwhelms me if I so much as try to get out of bed, and for that I need both drugs. And, even then, more fortitude than I can currently muster, because there was one thing I couldn’t make today’s doctor understand – or she didn’t want to – no drug I’ve tried to date has done more than mute my pain – it’s far too severe to do more than take the edge off it. It’s my view that to call such drugs “pain killers” when – as long as one remains conscious at any rate – they are nothing more than “pain modulators”, is extremely foolish. It gives patients hope which cannot be fulfilled. It also misinforms staff.

When I was in hospital in March/April this year, the nurses would come round every 2 hours, night or day.

Any pain?

Yep – same as usual.

But you’re taking pain killers!


In the end, before I lost it completely, I cornered the consultant’s HO and asked him why the nursing staff believed that analgesia = no pain at all? Because that wasn’t so for me, or for anybody I knew. Analgesia does not equal anaesthesia.  And he agreed with me that an analgesic which stopped pain dead in its tracks didn’t exist for most people.  In  which case, the idea that it does needs to be deleted from the nursing curriculum, and the sooner the better, so that patients are viewed in a more realistic light.

And one last thought on this subject – still being in serious pain despite “pain killers” didn’t get me better meds, and that’s precisely the problem I’m up against right now – GPs who have swallowed the pain killer crap whole but who really should know better.


14 thoughts on “Pushing me to the edge all over again…

  1. Oh, gods. *Can* you change practices before they kill you? Can you get in touch with CCG about the home-visit-discretion thing, maybe? Or even the police? The way it sounds I’d be tempted to phone the police and ask them to investigate your GP’s attempted murder… I’m horrified that, essentially, there is *no-one* you can go to if your GP is endangering your life, imminently, even after Shipman and all that crap. And deeply worried. I cannot think of anyone you can contact who would take action in time to be useful, rather than reluctantly initiating a bureacratic nightmare that will take months or years.

    Are there any lymphoedema charities who might be able to help advocate for you, or provide you with legal advice? Is it worth threatening to sue your GP/report him to GMC? The only immediate-response idea I have is to get on to social services (or better yet, get DN to do it) and tell them you urgently require support accessing medical care and if you don’t get it you will not survive. Depends on how good your local social services dept is, but I know mine would have someone on your doorstep in about an hour, tops, if they heard that and had verification from someone like the nurses that you need medical care and aren’t getting it. Maybe ask to speak to someone from the Safeguarding Team? You’re technically ‘vulnerable’ (hate that classification, but just think of it as ‘vulnerable to extreme idiocy’!) so they should be able to intervene, I think.

    Failing that, all I can come up with is taking one set of used dressings, sealing them appropriately and mailing them to your GP along with a note explaining that as he’s too lazy to come and see the dire state of your lymphoedema, and too tight to prescribe vital medication correctly, your lymphoedema has come to see him due to the extremity of your predicament, and your inability to get there to smack him silly yourself.

    I really wish I could help. Is it the pain that’s keeping you housebound? Good luck.

    • Is it the pain that’s keeping you housebound?

      Pain, the fact that I can’t wear trousers, or footwear, not even socks, the leakage, mess and stink.

      And I can’t go out as I don’t know when the nurses are going to turn up (twice a day at present, though the second is in the evening), even if I felt up to it, which has happened no more than 5 times since the end of August last year, so clearly not something I can plan for.

      I’ll certainly give what you say some thought, though.

  2. Can you ring the surgery first thing and ask for a home visit from a doc that knows you? Ask why the hell you are on Flucloxacillin as you know it does no good. You have a temperature, why?
    Then ask the bugger straight out if they are trying to make you leave the practice, or are making you get so angry that you cause some trouble so that they can take you off their lists? Ask for a very straightforward answer instead of being pissed about all the time!
    They have a duty of care to see you as you are housebound, or would they rather you got someone to take you to the surgery, (we know that’s not possible), where other patients in the waiting room can see and smell your legs, hear you in agony and see the way that you are treated and spoken to?
    I would still ask for a referral to the pain clinic at the hospital so that they could go through certain drugs and treatments with you, which when they find the ones that help you best the doctor HAS to prescribe if he likes it or not, and if it fooks up his budget or not.
    I hope you get a better night’s sleep tonight and that the pain is more *controllable* tonight and tomorrow.
    Jay x

    • Thing is, Jay,it’s now 4 doctors out of 5 who won’t respond. Or perhaps don’t respond is more accurate as I have no idea, when I ask for a visit, how many get the message. It could be just funnelled through to the one I wind up talking to, and the rest know no more than I do.

      Just no way of knowing.

      For now, I’ll pin my hopes on the hospital.

  3. Possibly a daft idea but…Could you phone your consultants secretary & ask to speak with them, Or put a complaint in online?

    Whatever Every best wish for a speedy hospital appointment Ron, love xxx

    • A year or two ago I’d have done just that, Jayne, but I learned the hard way that nothing pisses off consultants more than being contacted directly by patients.

      Or maybe I was just unlucky with my consultants? Dunno, but it didn’t end well.

      • in my day as a nurse, nurses weren’t allowed to speak to a Dr, be he registrar or consultant or whatever unless they were the nurse/sister in charge of the ward………….let alone patients.they could only speak when spoken to by the doc………..sounds like not a lot has changed in the last 40 odd years.about time these drs realised who pays their wages……. those who are or have paid taxes/NHS stamps etc..,

  4. The continuing story begins to sound like torture…
    Sounds like you have an ally in the District Nurse at least. Is she contactable ? After all she was the professional who considers the visit vital. I fear that a rising temperature means spreading infection and that is a great cause for concern.
    Someone on the end of a telephone is very easy to ignore no matter how loud you are shouting – do you have a relative, friend, lover who could daily make a nuisance of themselves at the surgery in person, to demand a response? The fact that there are no easy solutions to your problem is immaterial – the very least you should expect is adequate pain relief.
    My other suggestion is to contact your MP – this is NHS treatment at its worse and should be brought out in the open – not hidden away in your flat!

    • “do you have a relative, friend, lover” Er, no, no family; again, no, long-term disability for many people, including me, means isolation (just one reason I spend so much time on Twitter); and Ha! Fat chance with these legs!

      The doc’s been out, finally, and is sending some antibiotics later, and I’ll monitor my temp. If it shows signs of going up then – grudgingly! – I’ll go into hospital.

  5. Glad that the GP finally managed to drag his sorry @rse round to see you. Fingers crossed the antibiotics help you.
    Take care of yourself Ron.

  6. Left question on twitter.. did you discuss your drug regime with the doc? If so, did he/she LISTEN? No wonder you get down and depressed…while it’s obvious you have a lot of people on here who think a lot of you, and about you, we are all abstract in a sense. You could really do with someone who’s a bit more…well, present. So thank goodness for twitter…

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