More MS news articles for Jan 2002

Charlie Courtauld: I am the guru of suffering

09 December 2001

Looking for an answer to the Meaning of Life, Death and the Working Families' Tax Credit? Look no further. For yea, your guru is here. Until about this time last year, I walked in the valley of the ignorant, sounding off about issues of politics and current affairs through a glass, darkly. But now? Now, courtesy of my diagnosis, the scales have fallen from my eyes. For yes, I have joined the ranks of The Suffering, and surely my thoughts are now endowed with a new wisdom and insight. Ever since Job had all those Biblical boils and frogs to put up with, the notion of the nobility of suffering has been deeply ingrained into our psyche. But here's my shameful secret: suffering isn't noble. It doesn't make you wise. This column is just the same old claptrap.

Hurrying home to catch Newsnight one evening a while ago, I was beaten up in Askew Road, west London. The perpetrators were caught – and then released by a magistrate, whereupon they skipped the country. Now, given the choice, I'd have chosen to have that magistrate dropped from a great height, and the muggers' fingernails extracted. Fortunately, I wasn't given the choice. Anybody who remembers the electrifyingly vengeful testimony of the Eappen family during the trial of Louise Woodward must be aware that suffering can skew your rationality. Victims of violent crime are the last people to offer a Solomonesque judgement on their case.

And the same applies to medical suffering. For those of us with MS, the prospects for cloned stem cell research are awesome, offering the chance, perhaps, one day, of a cure. Embryonic cells, injected into our brains, could be persuaded to regenerate our battered heads. Which makes it impossible for us to offer a dispassionate view: I'd be all for the compulsory harvesting of stem cells from your children, if I thought that this might find a cure.

At first glance, there is always a temptation for legislators to bow to the views of patients when decision-making. After all, patients are usually well-informed about their condition, and up-to-date about research. To defer to their knowledge could seem both cheap and democratic. But it isn't. Too much knowledge is an expensive thing. So the Government has set up complicated pseudo-democratic "consultation" procedures which – they hope – will give it credit for "listening", while deflecting the blame on to quangos when accused of ignoring victims' pleas.

My friend Anne serves on the board of a mental health trust, and, as part of their remit, they must hold regular open meetings. All very "democratic". Only it isn't. Unsurprisingly, the only people who turn up to a mental health trust's meetings are monomaniacs from the green ink brigade. They may know a lot – but there's a good reason why they aren't on the board.

The same applies to those of us with MS. Ministers have handed the decision over to the "open" decision-making of their nice committee, with full consultation and appeals procedures. The committee have spent the past three years deliberating, consulting, hearing appeals – and coming to the decision which ministers wanted: that Interferon and Copaxone are too expensive for the NHS to provide.

My problem with all this is not that the wrong decision is arrived at: I'm parti pris on that score anyway. It is that this appearance of "democracy" is nothing of the kind. The consultation is not genuine – and neither are the consultees.

All of which may offer a pointer to the shape of Mr Blair's plans for a future "democratic" House of Lords. Most of the criticism hitherto has assumed that the Prime Minister will pack the chamber with cronies. I think that's unlikely – Downing Street is far too canny. A more likely scenario is that the Lords will be crammed with vociferous – and mutually exclusive – "special interest groups". Imagine the mock-disappointed faces on the Government benches in the Commons when the MPs are "forced" to make a decision over the heads of the quibbling lordships: a decision which ministers had long since decided on anyway.

So don't look to me for wise and impartial decisions. There is nothing wisdom-conferring about pain. It's just painful.