Thursday, August 23, 2007

The gravely ill man who beat the NHS

But only with the dedicated help of his wife. Excerpt:

And what she does is extraordinary. Right, she says to herself, 14 of the country's top neurologists have given up on Nigel. I'll find one who won't. And bugger me she does.

6am, Heathrow airport, a few days later: Michele is waiting for the man considered to be the world expert on brain diseases, Dr Patrick Kelly, to arrive from New York. He is flying to Stockholm to pick up some prize from an obscure body called the Nobel Institute, but after one telephone call from Michele he's agreed to see her during his stop-over at Heathrow to examine my notes and scans instead of wandering off for a cup of coffee and a bagel.

In the process, of course, Michele has come up against good old British jobs-worth work-to-rule, we-do-it-our-way-whoops-another-one-for-the-body-bag bureaucracy. The hospital wouldn't let her have my notes or scans. They weren't her property, they were theirs. So ya-boo sucks. Turns out they were worried she might lose them.

She was dumbfounded. Lose them? The details on her husband's condition? The stuff they needed to keep him alive? The hospital bosses held their legally correct, morally disgusting ground. [Fear of their incompetence and negligence being exposed. Better for the patient to die] By this point it was 8pm. Kelly's plane was due to land in 10 hours. So she nicked [stole] them. And at around midnight she crashed into the drunken, dying embers of a dinner party at the only friends of ours who had a photo-copying machine, to copy them - before heading off to the airport at around 4am. My uncle drove, partly out of kindness, partly because as an ex-copper he was keen to keep death off the roads.

So there they are, at the gate, watching the New York redeye disgorge its tired passengers. By now the plane is almost empty and Michele has bobbed up to a dozen startled men in smart suits, all of whom have backed away from this crazed little blonde thing. Then there is a tap on her shoulder. A leprechaun in a flat cap stands before her, barely reaching her chin. His stubby little hands jab at the notes. "Are they for me?"

So, by the light of the Avis rent-a-car sign this little, slightly railroaded surgical genius makes two pronouncements: 1. This is not a tumour. 2. If I'm wrong, and it is, it's not inoperable. I'll prove it by operating.

They shake hands; he says good-bye and scuttles off to get the next flight to Stockholm and sanity. The effect of his diagnosis on me is magical. It is the first good news. And there is a galvanising effect on the medical team. Blimey, I am worth saving. WE'RE entering the realms of experimental medicine now. Science fiction, almost. The machine that's wheeled in looks more like a tea trolley, the love child of a milk float and an Austin Allegro. They've bought it off Del Boy, surely. They can't really expect me to get hooked up to this piece of - oh. They've hooked me up to it. Via ugly, bloody tubes going into my groin.

Not to be too scientific, I think the idea is to calm down my hyperactive white cells by taking them on the equivalent of a holiday to Center Parcs. The entire procedure takes just under an hour. The first bottleful is removed/ replaced okay. There's a slight ache in my left side. Shell and my uncle are here and I try not to upset them by going Ouch too much. The second bottleful makes my left side stiff and sore. I can take it. The third bottleful and I stop telling jokes. I start to shake. I snatch a look at Michele. She's biting her lip....

I have six more of these procedures over the next couple of months. I always stop after the fifth bottle. Instead of taking yet another predictable daily turn for the worse, I wake up one morning to find - Ha! The fingers on my left hand are freer. Okay, it's not ideal - my fingers are bending the wrong way for a kick-off, but I've finally got their attention!

FOUR months later: another hospital, but this time I'm not the patient, although by the time I get there I probably should be. It's two days since I moved back home. I'm not better: I live on 500ml batches of Jevity ("Complete, balanced, isotonic liquid with mixed fibre and FOS") from a drip.

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