Earlier in the year, operating under the delusion that I was back to normal and getting my driving license back following a conversation with a nice (but entirely wrong) guy on the DVLA helpdesk, I subconsciously drifted out of taking my Keppra (Levetiracetam). This steroidal drug is taken after a brain op to lessen the chance of further seizures so it was more than a little retarded of me to stop taking it.
So it was in March that I woke up once more in the bedroom with a bunch of smiley paramedics tactfully trying to lever me into a pair of underpants. No stranger to indignity, I had also managed to piss the bed – thus completing the set of bodily fluids I have deposited there over the last decade or two.
Naturally I received a tongue-wagging lecture from, variously, friends, doctors, parents, wives and random passers-by. STAY ON THE DRUGS. Yes… yes… I know this now.
But even so, as June rolled around I once more awoke to the now numbingly familiar sight of high-vis jackets in the bedroom. “Not a fucking gain” thought I as I shuffled down the stairs on my backside. This time, I had been taking my drugs religiously. But even so – the function of the Keppra is merely to lessen the chance of recurrent seizures. They can still happen.
As luck would have it, the seizure occurred on a Thursday night, and on Friday I was seeing the nice neurologist who saw me after my first seizure. We exchanged pleasantries and began talking. I explained about my two recent seizures and the puzzled doc began asking about whether I was stressed, tired, taking recreational drugs, staying up late, boozing too much or just being generally crap. After some minutes of this talk, I suddenly sensed that he was unaware of the fact that I’d been diagnosed and treated for a meningioma.
“Can we just start again? You don’t know I’ve had a brain operation do you?”
Aghast, he checked my records. Nope. Nothing there. No record of the diagnosis, the scan, the operation, the previous post-op seizure. Nowt. Nada. This merely serves to reinforce my belief that the NHS is just too fucking unwieldy. Eventually, he found my records, but they weren’t attached to my NHS number, but to some entirely other system against my name and address.
This is 2012 and my 6 year old son can program a database capable of dealing with this shit. I was immediately reminded of some of the poor bastards I’d met during my op who’d been stuck in similar bureaucratic black holes for months or even years.
On the subject of mysterious bureacratic black holes, what’s the gig with the DVLA? You have a seizure and have to hand in your license to them. And then some time later they tell you how long they’re banning you for driving. All fair, right?
Well: you aren’t told anything about your case. Who decided and what criteria they use are left shrouded in mystery. I spoke to my neurosurgeon about the matter and he told me that a mysterious medical panel convene every so often to look at all the seizure cases and decide their driving fate. They phone the surgeon and ask for particulars of the operation = all factual stuff about the size/location of the tumour, but his input is otherwise unsought. The neurologist who deals with you isn’t consulted. Your doctor isn’t involved. You yourself are certainly not asked to make a submission. A letter arrives in your mail with a curt notice of the decision and that’s your lot, mate.
I think that kind of sucks. It’s not that I’m in a position to contest the decision, but it’s my brain, my life and I’d rather it not be discussed anonymously by remote experts and then handed down like some kind of fucking judicial sentence. Even just filling in the letter with a tiny smidgin of detail or local colour would be fair: “considering that your tumour was about the size of a golf ball, we had to cut a massive hole in your heed and you seem to be incapable of taking your meds, we decided not to let you loose on the roads. Especially as you’re a shit driver even in your normal state.” That and a signature would do for me.
Considering an FOI request, just on general principle.
Anyway: as the title of this post suggests. Keep up with the drugs, eh?