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.
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.