More MS news articles for April 2002

Charlie Courtauld: Neurologists anonymous

http://www.independent.co.uk/story.jsp?story=120423

17 February 2002

Have you got a spare? Back-of-a-lorry job? A neurologist, I mean. You see, I seem to have lost mine, and I don't quite know what to do about it.

For most of us, to be signed up to an NHS neurologist is something to be avoided. It means you're not quite right in the head. But just now I could do with one. And, courtesy of Essex Rivers Healthcare Trust, they're a bit thin on the ground up here ever since my multiple sclerosis guru, Giles, got the heave-ho from Colchester General for being rude. Rude? Is that even worse than being a "wrecker"? Haven't they seen bully-boy Meyer in Holby City, or egghead Romano in ER? Brilliant consultants are supposed to have what Human Resources staff call "poor people skills". Kind of like government special advisers. Even Jo Moore knows that. The more offhand they are, the more brilliant they must be. But managers at this health trust haven't been watching enough TV. So they got rid of Giles, and now I'm in a sort of limbo. Neurologistless. In a state of Neurologistlessness.

Which would be fine, really I rarely go to the neurologist anyway but Alan Milburn's made it rather important that I get one. The Health Secretary's announcement last week that despite the dud advice he got from the Government's own Nice committee he is going ahead with allowing NHS prescription of the MS drugs Beta Interferon and Copaxone (my one) means that I have to get a neurologist who can write one of those precious NHS prescriptions. What Milburn announced is actually rather canny, on the face of it. The NHS will pay for up to 10,000 of us to get the drugs but only if the medicinal compounds are seen to do their stuff. If they aren't as efficacious as the companies promise, then the health service will withdraw funding and the companies will bear the cost instead.

The devil is, as always, in the detail. How is Alan going to find his 10,000 suitable recipients without a massive boost in the number of neurologists? How is the long-term efficacy of these injections to be assessed? Wheelchair demand? The desire for successful treatments may bias doctors and drug companies towards the mildest cases. And, most significantly, what of those poor sods you, perhaps, or your kids who are yet to be diagnosed with MS? There doesn't seem to be any accounting for them in the proposal. It's a bit like one of those "Hurry, hurry, offer must end Friday" ads that Brucie does on Boxing Day for Courts furniture. Having dizzy spells? Eyesight problems? My advice is: don't delay, get yourself diagnosed with MS quick, before this once-in-a-lifetime bonanza ends.

These drugs aren't a cure. There isn't one yet. And they cost a packet. Hence the Nice committee's reluctance to recommend them. But they do apparently make relapses less frequent and, right now, they're the only straws we've got to clutch at. Hence, via a fantastically arcane route Israel, Hungary, courier company I'm paying for the drugs privately. Which surely must suggest that I'm an ideal candidate for them unless I've been wasting my mother's and mother-in-law's money for the past year.

But it leaves me with a dilemma. Do I follow Giles to his new NHS post in London which will involve journeys up to the Big Smoke to see him or do I register with a new bloke (they are all men, of course. Seen Holby City, have you?) in Ipswich, Bury St Edmunds or Addenbrooke's in Cambridge?

As it happens, I'm due to spend a week in Addenbrooke's next month anyway. My daughter, aged three, has congenital displacement of the hips. That means, according to the admirably rude paediatric consultant, that she may develop wonky walking or get arthritis by the age of 20. Her hip joints were straight "like a toffee apple" rather than bent "like a golf club". Having already operated on one hip, he wants to have a go at the other. Getting there and back is going to involve a lot of mileage: there's only a bed for one parent at a time, so we'll do daily swaps. I've delayed (yet again) taking part in the cannabis trial until it's over; driving while out of it isn't encouraged. So: Interferon, cannabis or Copaxone? London, Bury or Ipswich? All this decision-making makes my head spin. What I need is a neurologist.