Well, this has come along a lot sooner than I expected, the reason being my GP, in the space of three days, has twice failed to comply with guidelines for the treatment of Addison’s, first here, and again yesterday.
The first one, he prescribed an additional 10 days of hydrocortisone tablets when the Addison’s Clinical Advisory Panel guidelines say this should be 6 months worth. And yesterday I got the injectable hydro he’d promised.
The NICE guidelines – with which GPs are expected to comply – recommends Efcortisol, a liquid, for Addison’s. The reason for this is that patients are expected to self-inject in the event of a crisis, when they might also be expected to be too impaired to do much beyond draw up the solution and inject it. Opening an ampoule of water and measuring and mixing 2ml of it with a dry powder, then drawing up and injecting the result, might well be beyond them (me).
So what did my GP do? He prescribed Solu-Cortef, a two-part water and dry powder mix which, in a situation which might see me clinging on to consciousness – or even my life in an extreme case – by my fingernails, requires me to measure and mix a minuscule amount of sterile water with a vial of powder, then inject it.
This, as I’ve pointed out to the clown, is what NICE says about Addison’s:-
Source: NICE Addison’s Disease Guidelines:-
What is the prognosis?
If untreated, Addison’s disease is always fatal.
So given that this also probably applies if Addison’s is poorly treated, what possible motive can he have for making my life, my very survival, as difficult as he possibly can?
I’ve said, only half joking, that the bugger is trying to kill me – It’s not a joke any more.
Take Oramorph. He tries to restrict me to 5ml every 6 hours, using the entirely spurious argument that I’d die of respiratory suppression were I to take more. Yet in hospital, last time, the first thing they did was increase the dose to 10ml. I conspicuously failed to die.
Today I took 20ml to try to shut down the extreme pain that always follows a dressing change and which, today, was exacerbated by the nurse examining my injury,** the pain of which is on a par with last year. It didn’t work, nor did it do me any harm – not so much as a random wheeze!
**I leaned a big high-density polyethylene chopping board against the fridge, so I wouldn’t forget to scrub it. Then knocked it over and the top edge struck my shin, breaking the skin even through my trousers and raising a lump the size of an egg, despite getting a compression bandage on it within seconds. The pain was, and still is, excruciating. It shows no sign of healing, though Addison’s, I’m told, slowing down the healing process substantially. No sign of the pain letting up, either.
I understand that Addison’s is a rare condition (about 8.5k cases in the UK), and my GP might not have the in-depth knowledge of it that I’m busily acquiring but, like me, he can read and has access to exactly the same information that I now have, and more, plus in my letters to him I have provided all the information he needs, as well as links to the source documents, so he has absolutely no excuse for fucking up my life out of ignorance, so I can only assume that it’s deliberate.
Last year his failure to prescribe effective analgesia pushed me to the brink of suicide. This year he seems to be taking a more proactive role.
So, in an attempt to minimise his fuck-uppery I have ordered 100 20mg tablets (which can be split, of course), of hydrocortisone from my usual source ** which, despite interference from the British government, who made it impossible for them to operate a co.uk website, still also supplies me with antibiotics, which I should be able to get on the NHS but can’t, not in sufficient quantity, anyway.
**I’ve used them, with no problems, since 2003 at least. Good people, too.