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7.18 pm

The Parliamentary Under-Secretary of State for Health (Yvette Cooper): I congratulate the hon. Member for New Forest, East (Dr. Lewis) on securing an early Adjournment debate in the new parliamentary Session and on choosing to bring these important issues to the attention of the House. He spoke movingly about the plight of his constituent and his constituent's family. This is an area that does not always get the attention that it deserves, but one that can be devastating for families when an apparently fit and healthy young person suddenly dies without warning. In an age when we have come to associate death with old age, rather than youth, young people being struck down before their potential is fulfilled, without the time for people to adjust and say goodbye, can be almost too much to bear for grieving families, including parents who lose loved children and young people.

I pay tribute to the dedicated work of Cardiac Risk in the Young and, indeed, other voluntary organisations that provide a counselling network to help families who suffer such a loss. Support from people with real experience of the condition can certainly be a remarkable comfort to those who live on.

CRY and other organisations with an interest in the conditions have made a plea for greater awareness of risk factors among health professionals. The hon. Gentleman mentioned the need to increase awareness and to provide more information. I agree wholeheartedly with the importance of doing so and I have asked officials to investigate the potential for using the new media that are now available to us for communicating with health professionals and members of the public--including, for example, NHS Online and the electronic library for health--to provide updated information about risk factors.

Unfortunately, data on the true incidence of cardiomyopathy are hard to come by. Some studies put the incidence of hypertrophic cardiomyopathy at one

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person in 500. That is one of the problems that we encounter when we assess a proper policy response to the condition. Too little is known in many areas. As the hon. Gentleman rightly pointed out, little is known about the number of deaths caused by cardiomyopathies. The Office for National Statistics recorded 35 deaths due to sudden adult death syndrome in 1999, but this is almost certainly an underestimate. I take seriously his point about the problems with the coroner system and the inability to make a full inspection of the heart tissue in a post mortem following a sudden adult death. He may be aware that the Home Office has announced a full review of the antiquated coroner system, which includes public health specifically in its terms of reference. I shall ensure that the points raised this evening are passed on to that review.

Research is being carried out at the Imperial college school of medicine under Professor David Woods into the incidence of sudden adult death syndrome, and I believe that the research will be published later this year. We look forward to its conclusions to enlighten the policy process further.

The hon. Gentleman mentioned a national screening programme of young people to identify those with cardiomyopathy and those who are at increased risk of sudden death, and CRY has also done a lot of work on that issue. The national screening committee has looked at those proposals very carefully. For a screening programme to be practicable, there needs to be a clear means of defining cases of the disease and the ability to make a prognosis on the basis of that definition. In addition, there needs to be good evidence that early intervention can improve the prognosis. In other words, we need evidence that a national screening programme would make a real difference to health outcomes rather than simply provide information that might have no impact on those outcomes.

In 1999, the Department's national screening committee commissioned Dr. Stuart Logan of the Institute of Child Health to examine the feasibility of population screening for hypertrophic cardiomyopathy. His recommendation was that population screening would not meet those key criteria. He argued that the most commonly used case definition--left ventricular hypertrophy on echocardiography--would miss some people at risk and would identify significant numbers of people whose life span is likely to be no different from that of the general population. He also concluded that studies have suggested that starting treatment before the onset of symptoms--the point that the hon. Gentleman quoted from my letter--makes no difference to the course of the disease. In other words, no clear benefit would accrue to those told as a result of screening that they had a particular condition. Dr. Logan's conclusions were accepted and endorsed by the national screening committee.

Similarly, the role of genetic screening for hypertrophic cardiomyopathy remains to be determined. The hon. Gentleman mentioned genetic screening, which has huge potential in many areas and its development may take us in many directions. I understand, however, that in an editorial in the July edition of the journal Heart, which will be published next month, the leading expert in the

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field, Dr. Michael Vincent of the university of Utah, offers a conclusion on the present evidence base with regard to genetic testing for these conditions. The article states:

In other words, on the basis of what we know at this stage, Dr. Vincent concludes that information from gene testing would not be of practical use, given the limitations of our knowledge about how to improve outcomes.

I take very seriously what the hon. Gentleman said about not simply assuming that it is better for people not to know about their condition. It is wrong to make such judgments on behalf of other people. We must accept that giving people information about a condition that we may not be able to improve or for which we cannot offer alternative treatments or life styles can have psychological consequences. However, I agree that we cannot make presumptions about what people should know about their own health. My experience is that people increasingly want more information about their health and about the options open to them. They at least want the chance to decide for themselves what happens.

We must also bear in mind the evidence that exists about whether there is any positive benefit that should be taken into account. The 1999 study showed that there was insufficient evidence that the sort of diagnosis that would flow from a screening programme would be of benefit, but that is not to say that we should accept the findings of that study and do nothing to alter the status quo.

The hon. Gentleman asked whether implantable cardioverter defibrillators would take us further and change the position, and I shall ask the national screening committee to advise me on that. The National Institute for Clinical Excellence issued guidance in September 2000 on the use of such defibrillators. Implementation of that guidance in the NHS is expected to cause implantation rates to rise from the present 17 per 1 million people to around 50 per 1 million. Additional resources have been made available through health authority allocations to support the implementation of all the NICE recommendations.

Whether that will change the position in terms of screening depends on whether there is evidence that outcomes showed an improvement for people diagnosed with the condition at an early stage. We simply do not have evidence about how many casualties of sudden death syndrome would have benefited from ICDs, nor about how many people who might be diagnosed as a result of a screening process would also benefit from the implants. We need to know the answers to those critical questions to decide whether a screening programme was a good idea.

We also need more information about appropriate ways to treat the condition in general. The Cardiomyopathy Association, working with Professor William McKenna of St. George's hospital medical school, has been developing guidelines on the diagnosis and management of hypertrophic cardiomyopathy. We await those guidelines with interest, and will consider how best to disseminate them when they are published.

I shall ask the national screening committee to consider whether there has been sufficient development--in terms of evidence and new treatment possibilities--for it to update the 1999 review. I will write to the hon. Gentleman

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on that subject, as I consider it important for us to keep an open mind and to review matters as research uncovers further evidence.

Finally, I agree with the hon. Gentleman that research is the way forward. He asked about section 64 funding for CRY. Departmental officials will meet CRY later this summer, and I hope that they will be able to discuss the priorities that should be taken into consideration when

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section 64 funding is awarded. The hon. Gentleman will know that that the contest for that funding is sharp every year.

I thank the hon. Gentleman for raising these important matters, which are extremely serious for the families involved and especially for the constituent to whom he has referred this evening. I shall write to him with more information.

Question put and agreed to.

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