NHS waiting list world record
Wednesday when I got in from work I got a bit of a shock, in the form of a telephone call from my neurosurgeon’s secretary. When I saw my neurosurgeon last at the beginning of September, we decided that given the ongoing problems with my LP shunt, it was probably worth investigating my still in, but currently inoperative VP shunt.
His secretary was ringing to say that I was now officially on the waiting list for the operation (up until now I hadn’t been due to the bureaucracy involved in getting me onto the list), followed about 10 seconds after that by, “…and I’ve been looking and we have a slot available for Monday.” Now I know people complain about the NHS and waiting lists, but I have to say that 10 seconds from being told you’re on the list to getting a date is pretty damned good! In fact I’d imagine it’s probably a world record. All this depended though on being able to get me a pre-op assessment appointment this week. The surgeon’s secretary said she’d see what she could arrange, and call me back as soon as she had any news, but warned me it might be Thursday morning.
On Thursday morning she called me back with the good news that though she’d not been able to get me a pre-op assessment clinic appointment, the ward said I could go in earlier on Sunday and they’d do all the pre-op assessment then. I spoke to the ward Sister, because of course being on warfarin complicates everything, and she advised that I’d need to stop my warfarin, but that it was probably best to check with my GP, as due to the Factor V Leiden, he may not be happy about stopping the warfarin completely, and I might need heparin instead.
There followed much scurrying around and trying to rearrange appointments and contact work and so on. Having only three days to get myself organised and make all the necessary arrangements and having to tidy up so I could get to the wardrobe to actually get one of my travel bags out was a logistical nightmare. Last year just before Christmas when I ended up in hospital at short notice for a lumbar puncture when I spent a week tied to a heparin infusion and having 6 hourly blood tests, all for an LP which is normally (that is unless you’re on warfarin) done as a day case, at least I got a week’s notice, and that was bad enough.
I was in eleven days altogether for an LP which took about 20 minutes. The LP itself was done on my birthday – a rather unusual and unique present I have to say! A large part of that time I was hooked up to an IV heparin infusion, having blood taken every 6 hours so the heparin could be carefully adjusted. After the LP I was in for another 6 days while my INR got back to my therapeutic range, because haematology weren’t happy letting me home until I was back within my target INR range, though in the end they did teach me to do the Clexane anticoagulant injections myself so they could get me home earlier, and before my INR was back up at 2, otherwise I might well still have been there over Christmas. That’s another important reason for getting onto the INR self-testing, because it can potentially reduce the amount of time I spend in hospital every time I go in, waiting for my INR to get to where it should be. With self-testing I can test my own INR and ring my results through to the hospital who’ll advise me of any change in dosage needed. This is what I don’t get about the PCT’s reluctance to fund the testing strips. Okay, so they’re expensive (it costs me £61.15 for 24, but I’d imagine with their bulk buying power the NHS gets them cheaper), but I’ll bet it’s cheaper than the lab costs for testing INR, especially if you factor in all the staff time involved as well in taking the blood, testing it, and then interpreting the result, and a damned sight cheaper that a day or several in hospital.
I shouldn’t have worried though about only 3 days notice, because after the world record waiting list wait there followed probably the swiftest cancellation on record as well, and barely 24 hours after getting a date, I got another call from my neurosurgeon’s secretary to say that the ward staff had discussed it more, and had decided that bringing me in at the last minute wasn’t wise, as with my complicated medical history they felt I needed a full pre-op assessment, and that the warfarin issue would need very careful management, and I’d probably need switching to heparin because of the danger of me developing clots if I stop the warfarin.
I guess with any kind of surgery they have to be very careful when you’re on anticoagulants, but particularly when they’re messing around inside your head. Anywhere else and if you start bleeding they can just apply pressure to stop it, but when they’re messing around inside your head, that’s somewhere you definitely don’t want bleeding, so I guess they have to be ultra careful that everything’s at the right level and they don’t get any nasty surprises bringing you in at the last minute. At least I get chance to tidy up now and get myself organised properly. Normally anyhow it takes at least two days to figure out which of my geeky gadgets need to go with me and that I have all the appropriate cables and chargers handy and everything charged up (this of course takes priority over ensuring boring things like clothes and such like are packed).
Hopefully, as my surgeon’s recently had the amount of theatre time he’s allocated increased it shouldn’t be too long before they can get me a proper pre-op assessment clinic appointment sorted out and a date arranged. And hopefully I won’t end up spending another birthday in hospital.
