Dr Julian Lewis: It is with some trepidation that I rise to address the House on the question of cardiac risk in the young, or sudden death syndrome. I say "trepidation" because it is a subject on which I am by no means an expert. Therefore, I am grateful to see that a number of colleagues are nevertheless remaining for the debate.
I wish to do justice to a fine young man who I am proud to have as one of my constituents. His name is Adrian Woodhead. Adrian was married to Sarah and they were together for 10 years until, in 1997, just before Christmas, Sarah, who at the age of 28 had never been ill, had been very fit and was a non-smoker, suffered a massive heart seizure and died.
Adrian and Sarah had been hoping to start a family soon. He has movingly written to me about his feelings after that tragedy:
"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."
Indeed, Adrian does a great deal for other people. At the time of the tragedy, he was an assembly-line worker at Ford's. Since then, with great grit and determination, he has retrained as a police constable. When he passed out, he was awarded a baton of honour. He is a passionate exponent of the need to warn people about sudden death syndrome and its risk for the young. These are the three areas that Adrian has drawn to my attention: the need to raise awareness, the need for screening and the need for research. I shall address those in turn.
On the need to raise awareness, it is estimated that at least four young people in the United Kingdom die every week from sudden death syndrome; that is more than 200 tragedies every year. There is a great need to raise awareness among the public, so that, in those cases where symptoms begin to show themselves, they will be not lightly dismissed but investigated.
There is a need to raise awareness among general practitioners, so that, when young people go to see GPs with telling but not very severe warning symptoms, the GPs will act perhaps a bit more promptly than they do at present. In particular, GPs should be inquiring more whether other members of the family of the young person concerned have died young from heart failure, heart seizure or some other aspect of sudden death syndrome. If there is some history of that in the family, the young people should be screened.
There is a need for greater awareness on the part of coroners. All too often, when tragedies happen and young people die unexpectedly, the cause of death is given as accidental, natural causes or even, incorrectly, epilepsy. The great problem with sudden death syndrome – cardiac risk in the young, or whatever one chooses to call it – is that one does not usually see it coming, and when it happens it is too late. Screening is common policy for cervical smears and for breast tests. With such conditions people can see the disease coming and screening is accepted as a technique. It is a fact that an ordinary electrocardiogram will pick up the majority of the conditions constituting sudden death syndrome.
After the detection of such a condition, various prospects open up. There is the prospect of remedial action by implant, the prospect of remedial action by drugs, or the prospect of remedial action by changing one's life style. However, even in cases in which nothing is going to work and a fatal outcome cannot be averted, at least those who are subject to the genes responsible for those conditions can prepare themselves and their families for what will come, in the same way that families can prepare themselves when a child has a known terminal illness. People can do things now rather than postpone them, and they can choose what to do about whether to pass on the gene by having children.
Sudden death syndrome is a composite term for 10 main conditions. Hypertrophic cardiomyopathy, or HCM, accounts for about 30 percent of the cases; arrythmogenic right ventricular cardiomyopathy, or ARVC, accounts for about 20 percent of cases; and long QT syndrome accounts for another 10 percent. Of those three categories, which account for 60 percent of the cases generically known as SDS, four-fifths would be detected by ordinary electrocardiogram screening. If they were caught, the very least action that would be taken would be an echocardiogram – known as an ECHO – which is an ultrasound of the heart.
More than half of the 200-plus young people who die so tragically every year could be saved by medical intervention and change of lifestyle, particularly because so many of those who die are very active. They are particularly likely to be engaged in serious and energetic sport, and sometimes they are engaged in professional sport. I recognise that we are talking about very serious conditions and that between one-quarter and one-third of those who are vulnerable will die regardless. In other words, between one quarter and one-third of the 200-plus people who die each year from the conditions will probably suffer the same outcome regardless of whether their condition has been diagnosed in advance. Nevertheless, as I said, it is vital that people know what they have to contend with.
In professional tennis there is something called the Karen Krantzke Sportsmanship Award. It is given in memory of Karen Krantzke, an Australian doubles player who died at about age 30, in the mid-1970s, at the height of her powers. A friend of hers was Mrs. Alison Cox, the wife of Mark Cox – who as we all know was the No. 1 British tennis player in the 1970s.
In 1992, Mark and Alison's son Steven went to college in America on a sports scholarship. A few years earlier, a young man had died at that college from an SDS condition. Fearing future litigation, the college initiated a programme of automatic screening for young people on its intensive sports programmes. Consequently, it was discovered that Steven Cox, who was himself on the verge of a glittering tennis career, was suffering potentially from ARVC. Following that discovery, and his decision to change his lifestyle and forgo the professional tennis career that would otherwise have undoubtedly been his, he is still healthy at the age of 27, and it may well be that he owes his life to that screening in America.
It occurred to Alison Cox that not much had happened between the tragedy of Karen Krantzke in the mid-1970s and her own son's narrow escape in 1992, so she set up Cardiac Risk in the Young, which aims to raise awareness and to exert pressure for more screening, in the hope that conditions here will begin to match those in other parts of the world. For example, in this country there are only 17 implants per 1 million citizens. In Germany, there are more than 60, and in America more than 200.
The aim of CRY is to identify, screen and treat those most at risk: first, those in whose family there has been a death at a young age, and secondly, those who are engaged in serious sport. Its ultimate aim is the routine screening of those who participate in any serious sport, as is the case in Italy. So far, CRY's pilot programmes to test the effectiveness of ECG machines in detecting hidden heart conditions in young people have led to the placing of 26 machines in local communities, worth a total of £130,000. The organisation has also funded a £120,000 ECHO machine, which is needed for heart ultrasound – the vital next step after an ECG has detected the possibility of an SDS defect in a young person.
Section 64 of the Health Services and Public Health Act 1968 gives the Secretary of State power to make discretionary grants to voluntary organisations in England working in support of health objectives of which the Government approve. CRY has tried five times to get a grant for its important work, and I wonder whether the Minister will be able to give us any encouragement and lead us to hope that a future application will be more successful.
Adrian's third point concerned the need for research. I have referred briefly to implants. Internal cardiac defibrillators, or ICDs, kick-start a heart that has gone into seizure and regulate it after the attack. Five years ago, they were the size of half a brick; now they are the size of a matchbox. Five years ago, they required major surgery; now they can be implanted under local anaesthetic. Five years ago, they had to be sited deep in the stomach; now they are sited very near the surface, just below the collarbone, so that they can easily be tweaked, adjusted and serviced as required.
Drugs to thin the blood and prevent clotting are another form of medical intervention. Is the Minister satisfied that enough is being done to increase the number of implants that are being supplied, which would have to be tripled to match the number in Germany, and that enough research is being done on drugs to alleviate the dangers?
We must also consider genetic research. One of the objections to screening is the expense of ECGs and ECHO tests. I would be grateful if the Minister would indicate whether progress is being made on identifying a simple blood test for the gene that causes those syndromes. Does she accept that, if that could be done, the expense argument against screening would fall? If so, would some of her objections to screening be overcome?
I am coming to the end of my remarks, but refer to a letter that the Minister wrote to Earl Howe on 8 May. It is clearly designed to be helpful, but at one point it states that studies show that
"screening does not identify all those affected"—
by SDS –
"and also that there is little evidence at present that treatment before the onset of symptoms alters the course of the disease."
I feel that the Minister has been supplied with information that may be a little out of date. As we have seen, implants can make a considerable difference to the prospect of significant numbers of people surviving an attack of that sort. It is true that sometimes there are symptoms before a potentially fatal attack but, all too often, they are not recognised, either by the potential victim or by his or her GP.
There remains the question about the ethics of screening and whether or not it is a good thing. In the country as a whole, 10,000 to 15,000 people may be at risk, whereas "only" 200-plus per year will suffer the fatal outcome. There remains the ethical question whether it is right to worry the large number in order to save some of the small number. I believe that the evidence is in the affirmative. Alison Cox told me that of the hundreds of people affected by cardiac risk with whom she has dealt, only one mother said that she wished she had not known that her child was vulnerable. I am glad to say that, so far, her child has not suffered an attack; long may that continue.
The final word on the ethics of screening should go to Adrian Woodhead, the young man to whom I referred at the beginning of my speech. He told me:
"I'd have loved to have had a couple of children with Sarah: even if I'd known they'd have been with me for a limited time. It doesn't matter what condition you have – you just deal with it. But to deal with it, you've got to know."
On Adrian's behalf and on behalf of all the young people who are vulnerable to the condition, I hope that the Minister will have something positive to say this evening.