CARDIAC RISK IN THE YOUNG (SCREENING) BILL – 12 March 2004
Dr Julian Lewis: Sometimes there are visual images that stay in the mind from a film, a television programme, a documentary programme or a memorial programme. One of those occurred some years ago, around the time of Armistice Day. I think that it was in a film by Ken Russell. Towards the end, the camera zoomed in on one of the thousands of graves in an Allied cemetery in Flanders. There was some music playing, and gradually the camera began to pan along the tombstones. The music speeded up, and the camera went on and speeded up. By the end of the programme, the camera was moving along a line of tombstones with no end in sight. One was left with the impression of a terrible roll-call of bereaved families who had lost young people, in large part unnecessarily.
I was reminded of that image while listening to the hon. Member for Stockton, South (Dari Taylor) when she introduced her Bill. She should make no apology to the House for having taken some time to do so, because she was giving the equivalent of that camera image: she gave a roll-call of young lives that had been snuffed out, in many cases unnecessarily. I am proud to be a sponsor of her Bill, which endeavours to save as many young lives as medical science possibly can from such a cruel fate.
As well as paying tribute to the hon. Lady, I pay tribute to the hon. Member for North Durham (Kevan Jones), whose contribution I look forward to hearing if he is fortunate enough to catch Mr. Deputy Speaker's eye. He took up the mantle of forming the All-Party Parliamentary Group on Cardiac Risk in the Young, of which I have the privilege of being vice-chairman, while he has the burden of doing the work. I think that he would agree that it is significant that every speaker so far has come to the House motivated not by some general analytical interest in, or specialist knowledge of, the subject, but invariably by some personal experience of it.
In my case, as I explained on 21 June 2001 when I had an Adjournment debate on cardiac risk in the young, it was because a young constituent of mine, Adrian Woodhead, had come to my surgery and told me of the loss of his wife, Sarah, at the age of only 28. She was a young lady who had everything in front of her and who had the typical profile of not having any history of ill health, being immensely fit and strongly athletic. She died suddenly and without warning.
I said to the House then what Adrian said to me, and I repeat it now, with the indulgence of the House. He said:
" 'I expected the house to be full of noise and life, as you get from children, not silent through death and loneliness ... There is no structure to my life except for my work and my efforts to ensure that someone else might not have to go through this ... I can do things for other people, but I can do nothing for myself.' " – [Official Report, 21 June 2001; Vol. 370, c. 273.]
One of the things that he did for other people was to interest and involve his local Member of Parliament in that cause.
It was explained to me by Alison Cox, who has justifiably been singled out for immense praise in the debate for her pioneering work in founding Cardiac Risk in the Young, that there were three reasons why it has been difficult to create a groundswell of opinion about the problem: first, it was unexpected when sudden death syndrome struck; secondly, there were few survivors of it; and thirdly, therefore, anybody who might do anything about it would probably come from a family which had experienced a shocking bereavement.
What a tribute it is to those families that so many of them have turned shocking loss into positive action. Once those groups sprang up, we found no end of examples of tragedy striking in that way; and because people were beginning to articulate it and organise around it, tremendous progress has been made. In response to the debate in June 2001, the Government pledged substantial funds to Cardiac Risk in the Young, which it received and put to good use in its pilot programmes.
Although the work that has been done and the awareness that has been raised are admirable, the Bill is an essential further step, because we have to ensure that where tragedy strikes, it is not then unnecessarily multiplied. A key provision of the Bill is to make certain that the families of those who have been afflicted by sudden death syndrome are automatically screened. There is no excuse for not doing that when lightning has already struck.
Earlier, we heard a question about what happens in other countries. It is worth sharing with the House the background to how Alison Cox came to be involved in her campaign. She was aware that, back in the 1970s, a well-known rising tennis star called Karen Krantzke had died as a young woman. About 20 years later, Alison's son Steven was on the verge of a promising sports career and had won a sports scholarship to a university in America. Because of previous litigation, that college had established a screening programme. For that reason alone, it was discovered that Steven Cox – whose father was the famous tennis player, Mark Cox – had one of these conditions.
That discovery almost certainly saved Steven's life, as I am sure that he would acknowledge if he could hear me – which, although I am not supposed to mention it, I believe he can. Alison was inspired to do something about the situation because she saw how little progress had been made in the period between the death of young Karen Krantzke and the narrow escape of young Steven Cox. I salute her for what she has done.
As for comparing this country with others, I can throw a little light on that by citing the example of Germany. At the time of my Adjournment debate in June 2001, there were only 17 implants per million citizens in this country, but more than 60 per million in Germany and more than 200 per million in America.
Does screening help? One of the matters that caused me some concern at the time of the debate was a ministerial letter replying to Earl Howe on 8 May 2001, which, although designed to be helpful, stated that
"screening does not identify all those affected" –
by sudden death syndrome – and that
"there is little evidence at present that treatment before the onset of symptoms alters the course of the disease."
The hon. Member for Stockton, South rightly shakes her head. No Minister would make a statement like that today. Significant numbers of people have an opportunity to survive the condition provided that it is identified in time.
There remains the ethical question of whether parents of children who are at risk of sudden death syndrome want to know whether their children are susceptible or would rather not know, given that, in some cases, the onset of the attack will nevertheless be unavoidable. Alison Cox told me that, of the hundreds of people affected by cardiac risk with whom she had dealt, only one mother said that she wished that she had not known that her child was vulnerable. Far more typical of people's reactions was that of my constituent, Adrian Woodhead, who said:
"It doesn't matter what condition you have – you just deal with it. But to deal with it, you've got to know."
That is by far the most widespread view.
I conclude on a happy note. Several references have been made to the reception two nights ago on the House of Commons Terrace that I sponsored together with the hon. Members for North Durham and for Eastleigh (David Chidgey). Towards the end, I was delighted to find that my constituent, Adrian Woodhead, was present, and he approached me. He has indeed rebuilt his life and was accompanied by his charming girlfriend, Jenny, who proudly wore a badge that stated: "CRY supporter". We are here debating this important Bill only because of the spirit of people such as Adrian Woodhead and the other fine families to whom so many hon. Members have referred.
I congratulate the hon. Member for Stockton, South on promoting the Bill, and Alison Cox on founding CRY. Above all, I congratulate the relatives and the survivors, to whom we all owe so much.