More MS news articles for July 2002

Charlie Courtauld: What do I have to do to get my hands on some really good drugs?

http://www.independent.co.uk/story.jsp?story=314799

Charlie Courtauld
14 July 2002

The new BMA president, Sir Anthony Grabham, was widely applauded for a speech recently in which he described the "Third World" state of much of our healthcare. In fact, judging by my experience over the past month, he was unduly kind. Third World healthcare is much more civilised.

On hearing of my multiple sclerosis these days, most people come up with a similar line which I must have heard 100 times; something like: "Well, at least you're getting those drugs free on the NHS nowadays." So, in the week that I've just paid yet another five hundred quid for one month's supply, let me tell you that, in this new "patient-centred NHS", it's not quite as simple as that.

It is true that Alan Milburn's department issued a directive earlier this year that Beta Interferon and Copaxone (my one) should be available for prescription in the spring. It's true, too, that I've spoken to my GP, my NHS neurologist, the head of the local Primary Care Trust, even to the drug suppliers and manufacturers. All are happy or at least willing to provide me with the potions. I've had the NHS prescription written, I've sent it off to the suppliers. I've waited. I've rung. I've emailed. But no drugs. Now, listen carefully; not even Franz Kafka came up with a bureaucracy as spookily arcane as this. Even though my care trust here in Essex has agreed to pay, it appears that the initial cash needs to come from Bart's Trust in London. And some pharmacist at Bart's has put a stop on the prescription because, even though it was ordered to prescribe by the Department of Health, the London-based Barking Primary Care Trust hasn't yet had its meeting at which the funding is to be agreed (Bart's comes within its area, believe it or not). It's scheduled for some time this month.

What the hell is going on with the NHS when some bastard from Barking can stop me getting the drugs which my GP and my neurologist think I need and my local trust will cough up for? My sister's old boss, Nicholas Soames, kindly even put down a couple of Parliamentary Questions about the problem. The answer to the first was quick and concise. Minister Hazel Blears wrote to him that "Copaxone is available on the NHS under the risk-sharing scheme for disease-modifying drugs for multiple sclerosis that came into operation on 6 May 2002". Clear, swift and no help at all. For the minister chose not to answer, yet, the second question: "To ask the Secretary of State for Health if Copaxone is available at St Batholomew's Hospital; and for what reasons a valid prescription for Copaxone would be inadmissible." You might think that one hard to evade, but following last week's revelations from the Lib Dems about just how sneakily civil servants try to avoid straight questions, I've looked for the flaw in this one. And I'm afraid I've found it. You see, my prescription did not come from Bart's itself it came from the London, another hospital in Bart's Trust. So I fully expect more flannel, more waiting, more frustration.

A year or so ago I described the desperation among MS sufferers like me for a big name to come down with our disease. Not that I wish it on any of them, but it would certainly be handy if we could garner a bit of the "sexy" cachet that Michael J Fox, Muhammed Ali and even Ronald Reagan have given to Alzheimer's and Parkinson's. Why can't we bag a big-name victim?

Well, now we have. The biggest of them all. Potus himself. For the uninitiated, that means the President of the United States. Yes, that finger on the nuclear button could well have a worrisome shake, as Josiah Bartlett reaches out towards all our annihilations. Josiah who?, you may ask. I'm afraid that's the problem. Its not the real Potus, that gurning goof from Texas. It's just the pretend one portrayed by Martin Sheen in Channel 4's The West Wing who's got the disease. OK, so he looks a bit like JFK they've even got that Kennedyesque photo from behind in the opening titles. But he's not real. He's bull.

Rather like those free drugs we all heard so much about.
 

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