More MS news articles for April 2001

Charlie Courtauld: While we wait, the experts can't even decide when to decide

'Less than keen on any lottery that would not pay for its big tent by the Thames, New Labour came to office promising to end the "postcode lottery" in the NHS'.

01 April 2001

This was the system whereby local health authorities could choose their own priorities for drug prescriptions and it had led to wide disparities across the country.

So Tony Blair set up the National Institute for Clinical Excellence. Nice for short: a nice name for nice people. Or so we are supposed to think. But Nice has turned nasty to those of us with multiple sclerosis; we await a decision as to whether or not the drugs that may lessen the frequency of our attacks are value for money ­ and so can be prescribed. So far, Nice has deliberated for more than two years, and come to no conclusion. Its latest estimate for an announcement is sometime around November.

In a former guise, I was editor of the BBC's Question Time. During my tenure, the edition that generated the most headlines was broadcast on 8 July 1998. That was when the Prime Minister, caught off-guard by a question on fox hunting, made the pledge to ban the sport, a decision he must now regret. I mention this only because there was another question addressed to him that night which has become significant for me. Unlike Mr Blair's remarks on hunting, this issue, however, has been widely ignored. During a discussion about NHS waiting lists, a grey-haired woman in the audience put her hand up to speak to the Prime Minister.

"May I suggest one way of reducing your waiting lists to go into hospital is to make sure that multiple sclerosis patients have the benefit of beta interferon? It has been proven they won't have to go into hospital so often," she said.

TB: "Well thank you for your suggestion. I'm not qualified actually to answer on it. But if I can make the more general point, there are all sorts of things you can do to reduce waiting lists."

Woman: "May I suggest that that answer does not address the question. Patients should not have to be at that level [waiting]. They should be helped before they need hospitalisation."

"If you leave me your name I will write to you."

"I have written to you. It took eight weeks to get a reply."

Oh dear. I knew this question would arise, even if it took Mr Blair by surprise. Every Question Time audience member can suggest two questions. The fact that this redoubtable person had taken the unusual step of suggesting identical questions on beta interferon left no doubt that the subject would arise if the opportunity came; a discussion on waiting lists was just what she needed.

What I didn't know then, of course, was that I'd soon find myself on that beta interferon waiting list ­ and I am somewhere near the bottom of Essex Rivers Health Authority's list.

Since that day, along with every other MP, Mr Blair has had to educate himself about MS drugs; and they have become something of a political hot potato. Even William Hague has noticed, and was prompted to ask a Commons question about them. But from Nice, no decision. It can't even decide when it will decide, as the putative date for an announcement is delayed yet again. All of which means that I, along with thousands of others, have faced the unpalatable choice of either waiting on or paying for the drugs. Giles, the neurologist, thinks that Nice will decide against prescribing ­ so I'm taking the latter course.

Just as the market takes a nosedive, my mother is flogging her remaining stocks to fund my £500-a-month supply of a drug called Copaxone. It's half the price of interferon.

But even coughing up loads of dosh for a daily jab isn't as easy as it sounds. Before I can get my uncontrollably shaking hands (is it excitement or tremor?) on the phials of this precious stuff, I have to undergo more tests to check my suitability. Blood is drawn. My white cell count is high. Isn't that good? Chest X-rays are snapped. Er, why?

A wait for the results. Then even after the magical prescription is written out by Giles, I need to make a booking to be taught how to inject myself with the valuable fluid every morning without pumping it straight into a vein by mistake. Space for the tubes must be found in the fridge out of the reach of prying daughters ­ so it's farewell to that manky lump of past-its-date mozzarella.

Of course, the sting in the Nice tale is that the committee's rulings do not cover Scotland or Northern Ireland, anyway. As it has done with student fees and long-term nursing care, and is now on the point of doing with measles jabs, the Scottish parliament will undoubtedly cock a snook at Westminster by allowing beta interferon prescriptions north of the border. This go-ahead is especially likely since (for reasons that remain unclear) Scotland is MS-land: it has twice the proportion of cases that we have in England.

So it may be time to flip through those Country Life Scottish house adverts, and dream of moving to Lochinver. Long live the postcode McLottery!