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12.21 pm
Mr. Martin Caton (Gower) (Lab): It is a great pleasure to take part in such an excellent debate—excellent because it is built on the real experience of
Members' constituents and people whom they know. We have even heard of the personal experience of the hon. Member for Cheltenham (Mr. Jones). I am not sure that I would want to go through what he did just to make my Chief Whip nicer to me, but I suppose it is an option I could consider.
Mr. Kevan Jones: It would not work.
Mr. Caton: I suspect that my hon. Friend may be right.
I congratulate my hon. Friend the Member for Stockton, South (Ms Taylor) on her success in the ballot, on her choice of subject, and on the lucidity and passion with which she explained the Bill's content—the reasons for it and what it would mean for all our constituents—in her detailed and exhaustive speech. I must confess that, until four or five years ago, I did not realise how many apparently healthy and fit young people were taken by sudden cardiac death every year in our constituencies.
Then I met my constituent Mrs. Paulette Smith, the local representative in the Glamorgan area for the organisation which, as we have heard, has done so much valuable work nationally and locally. She told me of her experience of losing her son Christian suddenly and tragically to an undiagnosed heart condition. He was 24. The terrible anguish that she, her husband and other family members suffered is sadly being repeated all over the country almost daily.
As we have heard, between four and eight youngsters die from cardiac abnormalities each week in the United Kingdom. As soon as Paulette learned of my hon. Friend's choice of subject, she contacted me again and urged me to give the Bill my full support. She and her husband were here at the CRY reception on Wednesday evening, and were delighted to observe the breadth of support from Members throughout the House.
It is only really at the personal, the human and the family level—as in the case of the Smiths and others of whom we have heard today—that we can even begin to perceive the real consequences of sudden death syndrome. To lose a child, even if he or she has grown to adulthood, is every parent's worst fear. It turns the natural sequence of life on its head. It is the disaster that people dread, and it must be the most difficult loss to come to terms with, whatever the circumstances. Sudden death syndrome, however, adds a further cruel dimension. It comes out of the blue and targets the apparently fit and healthy—especially the sports enthusiasts whose families are sure that their very athleticism is the best possible way of protecting their health. But in fact, because there is an undetected underlying cardiac abnormality, the stress that their sport puts on their heart can be the trigger that leads to death. A huge chasm thereby opens in the life of another family, without even the hint of a warning, and often with no opportunity for final contact with the young victim before their death. As one mum who lost her 19-year-old son put it, "The worst thing about sudden death syndrome is that there are no 'goodbyes' or 'I love yous'; the person is just taken away from you."
Those of us who have been fortunate enough never to have suffered such a tragedy can only begin to imagine its awfulness, and whether or how, over time, we could
come to terms with it. Like others, I want to pay tribute to CRY for creating a network of trained counsellors throughout the country, and to the volunteers who have themselves suffered the loss of a close relative, and who are prepared to share their experiences in helping others to cope with a similar loss. That takes a special sort of courage and dedication that we should all acknowledge.My constituent Paulette is such a counsellor. Like other CRY activists, she is also a fundraiser for necessary medical equipment, a campaigner for improvement, and an educator about the various causes of cardiac arrest in the young, and what can be done about them. I am one of the beneficiaries of that educational role. Although I am still somewhat ignorant, I am not half as ignorant as I used to be, thanks to the CRY information that Paulette has provided, which is clear, succinct and accessible to the layperson.
Sudden cardiac death is defined as
- "an event that is not traumatic, non-violent, unexpected and resulting from sudden cardiac arrest within six hours of previously witnessed normal health".
On looking at the list of conditions responsible for these deaths, it appears that in most cases they can be detected using electrocardiography and echocardiograms, as has been mentioned. And there is undisputed evidence of the heritability of such conditions. It appears that if they are detected, remedial action can be taken in the majority of cases. As has been said, treatment could involve drugs such as beta-blockers and diuretics, surgery, or implanting a pacemaker or an implantable cardioverter defibrillator. Often, it would involve a change in lifestyle.
There is strong evidence that screening is worth doing, but the Bill is not calling for a national programme such as that in Italy, where all young competitive athletes are now screened. I look forward to the day when we have such a screening programme, but I recognise that it is not on today's agenda; and when it does arrive, it is unlikely to do so in the form of a private Member's Bill. The Bill does not go that far, but it is an important step forward. What it does provide is a means of turning the Department of Health's current good intentions into practical action for more of the people who are at greatest risk from these conditions.
Currently, the DOH has adopted the UK National Screening Committee recommendation, which advises that
- "relatives of people who have died of sudden cardiac death or who are diagnosed with one of the underlying conditions should be screened because there is a genetic component in many of these cases."
Ms Dari Taylor: My hon. Friend is making an incredibly persuasive speech that focuses on the value of screening, but there are certain factors that should be acknowledged in terms of the UK National Screening Committee's consideration of screening requirements for cardiomyopathies and ion channelopathies. Through the Bill, we are requesting that someone be able to listen to such problems in detail on the echocardiogram, or to see them through the screening process. We are talking about often very small indicators, and specialists have to know what they are looking for in order correctly to define the condition and the treatment that should be provided.
Mr. Caton: My hon. Friend is absolutely right, and her Bill will help to correct some of those omissions. It will create a chain of responsibility for getting the necessary information to the people whose lives it might save. That chain might start with the pathologist who carries out the post-mortem and go through GP to the family members, who can then consult the relevant specialist, or it might start with the specialist who, having diagnosed cardiac disease, can provide the patient with the necessary information for her or his close relatives.
Whichever way it works, the respective responsibility of GP, specialist and pathologist would in future be clear. I have no doubt that that would result in many more people becoming aware of their need to be screened and undertaking that screening. Those who screened positive for any of the conditions could then access the best treatment, and then make the necessary lifestyle changes.
I am convinced that this simple measure can make a real contribution to reducing the death toll of youngsters in our country from sudden death syndrome. We need action now.
12.31 pm
Huw Irranca-Davies (Ogmore) (Lab): I pay tribute to my hon. Friend the Member for Stockton, South (Ms Taylor). Her Bill is timely. Indeed, it is overdue. Hon. Members have paid a great tribute to it, as has CRY, which also recognises the importance of the measure and the fact that it is overdue. I was at the reception earlier this week with CRY and met some old friends from Swansea who had suffered the appalling distress of a tragedy in their own family that had come like a bolt from the blue, with no opportunity to say their goodbyes to their sons and daughters. So many hundreds of people have been through that, and we all recognise the importance of the provisions and the spirit of the Bill.
Much lobbying has gone on, including by the all-party parliamentary group. I am not a member of it, but I recognise the significant work that it has done. As my hon. Friend the Member for Gower (Mr. Caton) said, hon. Members often face criticism about what we can do
or what we are here for, and people ask what this democratic institution is all about, but here today, in these few hours, we can make a significant inroad into a specific area that will make a measurable difference to the quality of life of individuals and their families in dealing with what can be a great tragedy. I hope that we will hear words of encouragement from the Minister, and that we can show that this democratic institution is alive and well and functioning as it should.Earlier, we heard definitions of who is young. While I am perhaps speaking for the young, I cannot say that I am speaking as one of them, which is extremely regrettable, so perhaps we can revisit the definitions in the Bill. The truism is often referred to that no parent, in an ideal world, should ever see their children pass away before them. I say that as the father of three young children. No parent should have to outlive their own children, but it happens.
Sometimes there are tragic circumstances. I hope that the House will forgive me if I digress slightly to pay my condolences to those affected by the extreme tragedy that we saw out of the blue sky yesterday in Madrid. The heartless and callous nature of the bombings, which snatched people away from their families, was shocking. That tragedy also draws attention to an aspect of today's debate. Although there will always be calamities that befall any family—things that happen out of the blue and cannot be predicted—all hon. Members present today are attempting to deal with aspects of life that can be predicted and detected. We are trying to introduce a measure that in some small way will, if not save all the lives of people whose conditions can be detected or improve every aspect of cardiac problems that can be diagnosed, nevertheless help in the majority of cases. That is why it is vital to respond favourably to the Bill today.
The Bill is modest, and I say that in the best sense of the word. First, it is genuinely modest in that it is not designed to provide wholesale wall-to-wall screening of every individual. It is about targeting those at the highest risk, which is surely not an unreasonable demand. Another aspect of the Bill's modesty is the necessity to inform those most likely to be at risk on the genetic chain as a result of the findings of a coroner's report. That is not unachievable or unreasonable: it is a modest aim, but it could have major ramifications and save hundreds of lives each year. It is not a blanket prescription or a blunderbuss approach, but a well targeted and modest allocation of resources to achieve its ends.
If I may go beyond the Bill, there is a great need, as has already been mentioned today, for improved recognition at an early stage of certain conditions. Our GPs and clinicians do a fantastic job in all our communities, and we all know that they are extremely stretched. We see how they are trying to modernise their facilities and way of working, by bringing additional services within GP practices, joining together as GPs in order to enhance specialisms, using practice nurses and so forth. However, as has emerged time and again in the debate, somewhere along the line there is a breakdown in the clinical recognition of conditions at a sufficiently early stage.
I understand that that is beyond the scope of the Bill, but it sends out a clear message. As our clinicians and GPs rightly undergo regular updating of their medical
expertise and knowledge, we now know of one issue that should be at the forefront of their ongoing training. We must also address the problem associated with the willingness to refer, which goes beyond the ability to detect when a referral for screening is necessary. It is hugely regrettable—it could lead to loss of life—when a patient is told not to worry about a condition or that it is perfectly normal, with the implication that screening is an unnecessary waste of resources. That is unacceptable. Those issues go beyond the Bill's scope, but the Bill will, in a modest and practical way, allow early detection and early referral, which could improve the quality of, or even save, hundreds of lives.The Bill's first three humble clauses effectively set out three ways to save lives. Clause 1 deals with
- "action to be taken following a sudden death";
- "the role of the GP";
- "the role of the specialist".
The hon. Gentleman referred to the family of Mark Cox, the tennis player, which reminded me of my father who, as a teenager at the outbreak of the second world war, applied to the Royal Air Force. He had ambitions to serve his country as a fighter pilot, but he was turned down because he had a cardiac problem. It was of a sort that would not necessarily affect his longevity—he is still going strong, and all credit to him—but he should not be exposed to the exhilaration, adrenalin and altitude experienced by a fighter pilot. That cardiac problem was discovered by chance, and we have heard similar stories today of cardiac problems being diagnosed through chance or serendipity. That is not good enough. We need more focused, targeted action. We can identify those at most risk directly, and through them members of their family members who may be at risk. We need to do that.
The mention of Mark and Steven Cox was interesting because my father did not give up exercise after his diagnosis. Instead, he went on to captain the successful Goworton lawn tennis club for many years, and he was the club's first ever secretary. I mention that only because the history books of the club do not mention it, so I shall put it on the record here.
It is often remarked that cats have nine lives. We are not trying to give people an additional life, but to enable them to make the most of the life they have. We are trying to save lives and, by detecting problems early, to increase the chance that people can improve their quality of life. That is an admirable intention, and it is an admirable Bill. I hope that my hon. Friend the Minister will be able to encourage us that we are on the right track and can move forward with the Bill.
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