The Parliamentary Under-Secretary of State for Health (Jane Ellison)
I thank my hon. Friend the Member for Eastleigh (Mims Davies) and all the other Members who have contributed to the debate for raising what is—as has been more than amply demonstrated—a serious and important issue. We have heard from Members who have suffered tragic losses, and I myself have lost a friend in similar circumstances. I thank all Members for bringing their experiences to the Chamber to inform our debate. Obviously, our sympathies are with the families who have been affected.
I suspect that some elements of my speech will not satisfy my hon. Friend, but I want to try to identify the areas in which I think we are making some progress, and also those in which some of the real difficulties lie. Many of them involve clinical challenges rather than political decisions.
I join my hon. Friend in paying tribute to her constituents Graham and Anne Hunter, who have worked tirelessly to raise awareness of sudden adult death syndrome because of the personal tragedy that they suffered. My right hon. Friend the Secretary of State met them in June 2013, along with the UK National Screening Committee’s secretariat and Public Health England’s director of screening programmes, Dr Anne Mackie.
Sadly, as we know, not everyone survives cardiac arrest, and 100,000 people die of heart disease annually in the United Kingdom. As my hon. Friend said, an estimated 400 to 500 cardiac deaths each year are unexplained, and most have a genetic basis. In some cases there is no definite cause of death, even after the heart has been examined by an expert cardiac pathologist. Most sudden deaths in people under 30 are caused by inherited cardiomyopathies and arrhythmias. The situation is very tragic.
My hon. Friend mentioned three possible solutions. The principal one was population screening, but she also mentioned defibrillators, the provision of testing and advice for the families of those who suffer a sudden cardiac arrest, and GP awareness. I shall try to touch on all those points, although time is slightly against me: I have only about 10 minutes.
I think that if population screening were easy and obvious, we would do it, but it is not easy or obvious, despite the compelling reasons why we would all want to respond to the challenge. Let me try to explain why. As many Members will know, screening programmes in England are set up on the advice of the UK National Screening Committee, so these are not political decisions. They are decisions based on the best currently available evidence and expert advice from those who are most qualified to provide it, and many factors are weighed in the balance. The evidence is drawn from the United Kingdom and from other countries around the world.
Earlier this year, the UK NSC carefully considered the evidence in favour of introducing cardiac screening for people between the ages of 12 and 39. They took account of, for instance, the fact that sudden cardiac death covers a range of extremely complex conditions which are very difficult to detect by means of screening. Although it is such an important health problem, the committee found little peer-reviewed evidence that would have enabled it to make an accurate assessment of the number of people affected.
There is no single test that can detect all the conditions involved, nor is it possible to say which abnormalities will lead to sudden cardiac death. Moreover—this applies to other kinds of screening, but it applies particularly in this context—there is currently a risk that a false positive or a false negative could result. There is a clear risk that a positive result could be given to someone who was not affected by these conditions, and we can all imagine some of the effects that that might have. Someone might worry unnecessarily about having a heart problem, and might refrain from exercise that would be beneficial for their health, or give up a promising career in sport. A false negative would also present significant challenges. It is possible to have a heart problem that a test will not pick up. Fabrice Muamba, for example, had several screening tests throughout his career which did not identify any problems, but we saw his sudden collapse on the pitch at White Hart Lane.
Telling someone they have a condition when they do not could cause unnecessary anxiety to everyone concerned, even though it might not affect them. That causes difficulties, as does telling someone they are in the clear when they are not. These are the difficult elements of decision making and evidence that our expert committees have to sift in coming to a conclusion and making a recommendation. In the review that has just taken place, no studies reporting on test performance, sensitivity or specificity were identified by academic evidence. It was therefore felt that it was not possible to recommend the use of such a test in a national programme.
Another key test for screening is that once a problem has been detected, there must be something we can do about it, either by treating a condition or by helping someone to remain healthy. The conditions that lead to sudden cardiac death are poorly understood, and there is no evidence to guide clinicians as to what the treatment or lifestyle advice would be when a problem is found in a family member. That is not to say that in every circumstance people cannot give advice, but across a population-based screening programme it would not be possible to know what the advice would be for everyone screened. For some of the conditions implicated in sudden death there is no treatment. Delivering the message that someone has a condition is extremely difficult, but it is exacerbated where no known treatment is available. A person who tests positively will face significant dilemmas, and not just the ones I have touched on. Such dilemmas may involve ending a career they have mapped out for themselves or decisions about their family situation. They can also be penalised financially through higher insurance premiums.
On screening, the situation is extremely difficult. The evidence has been carefully weighed up recently, and we should introduce screening only when there is evidence that it can be effective. Overall, at this time, the UK NSC found insufficient evidence to support it. That position was supported by the British Cardiovascular Society, the national clinical director for heart disease in the NHS and the Royal College of Paediatrics and Child Health. They made that position clear in their responses to the public consultation. The difficulties were acknowledged even by Cardiac Risk in the Young, which, as many hon. Members have said, does wonderful work campaigning in this area. It acknowledged some of the concerns identified by the review, although I also accept that it took issue with some of the other matters raised in the conclusions.
This year’s decision by the UK NSC is not the end of the road in the consideration of screening for sudden cardiac death. The evidence is routinely reviewed every three years, but individuals and organisations can alert the committee at any time to any new peer-reviewed evidence published in the interval between regular reviews. It goes without saying that I will draw the committee’s attention to this excellent debate, how well supported it has been and the strength of feeling that has been expressed. Such a notification will be considered by the UK NSC, which can conduct an early update of a review in response.
Let me respond to the point that was made about Italy, because it has been raised before. My hon. Friend the Member for Eastleigh mentioned the example of Italy’s introduction of screening for all children involved in organised sport. Although there is literature on the screening of young people participating in sport, the evidence is again mixed, and some of the outcomes have been questioned. We are keen to understand what is going on in Italy, but it has yet to share its national data on the screening programme. The Secretary of State wrote to his Italian counterpart to request these data in August 2013, following the meeting that I mentioned earlier. This has been chased up on a number of occasions but the data have not been forthcoming, to date. Obviously, I will write again after this debate to say that we would like to see the data, because they might be one example of data that could inform a future NSC evidence review. My hon. Friend and other hon. Members may also be interested to know that the Sports Minister and I spoke today to some of the major sports governing bodies and raised this important issue. They are very much aware of their responsibilities towards young athletes, and we had a very productive discussion about what they have already done and what more they are considering in this area.
Let me touch a little on the research that is going on, because I have mentioned that we do not know much about some of these conditions and do not have treatments for some of them. The National Institute for Health Research is funding research on early detection of asymptomatic cardiomyopathies through its biomedical research centres and units, including the genetic aspects of the condition. It is also supporting a project with partners, including Manchester United football club, to identify the healthy limits and wider benefits of exercise for young elite athletes, normal healthy children and children with congenital heart defects. There is some really interesting and important work going on, and some of the data will be used to improve screening protocols for cardiac abnormalities in young athletes. The evidence from that research will be provided to the UK NSC when it next reviews the evidence, or earlier if new evidence comes to light.
Let me touch on defibrillators in the remaining three minutes. Tonight we have heard some wonderful examples of local campaigns across the country, and I pay tribute to all the people involved in ensuring that we accelerate access to defibrillators. In the March Budget my right hon. Friend the Chancellor of the Exchequer announced a £1 million fund to boost public provision of defibrillators in England and to support training in their use. That funding is now being administered by the British Heart Foundation.
Members of Parliament also have a role to play in that regard, for example if they think there are places where we need to have defibrillators. Many of them are in public buildings and sports grounds—I was discussing this with sports governing bodies only today—but they are of no use to wider communities when those buildings or grounds are closed. We can ask those questions on the back of debates such as this one, and I know that hon. Members are well placed to do that. The Hunter family, of course, have been extremely instrumental in making that change happen, and we pay tribute to them for that.
My hon. Friend also mentioned the importance of providing support to families of people who have suffered a sudden cardiac death and the need to ensure that GPs are aware of that. I make a commitment now to write to the Royal College of General Practitioners and draw its attention to the strength of feeling and the continuing concern that this might not be as well understood as it should be. When there is a sudden cardiac death, we need to take action to ensure that potentially affected family members are identified and offered counselling and testing to see if they, too, are at risk.
The national clinical director for heart disease, Professor Huon Gray, and representatives of NHS England, the Department of Health and the British Heart Foundation met the Chief Coroner in late 2013 to discuss that matter. Guidance has now been issued to the coronial system on how to deal with potentially affected family members. The Department will do all it can to encourage that, and I will write to the Royal College of General Practitioners to draw its attention to Members’ interest in spreading good practice in this regard. NHS England is committed to working with all stakeholders to ensure that we develop and spread good practice, particularly as evidence becomes available.
I will conclude by once again thanking my hon. Friend the Member for Eastleigh and all hon. Members who have attended the debate—I have responded to a great many Adjournment debates, and this is easily one of the best attended. That is clear evidence of the strength of feeling across the House on this important subject. We will continue to give it our utmost attention.