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Cardiac Screening: Young People

Volume 601: debated on Tuesday 27 October 2015

Motion made, and Question proposed, That this House do now adjourn.—(Charlie Elphicke.)

I am grateful to you, Mr Deputy Speaker, for the opportunity to discuss the crucial matter of cardiac screening for our young people. I am delighted to be able to speak tonight because I did the 10-mile Great South Run on Sunday for CRY—Cardiac Risk in the Young—which raises awareness, supports screening and research, and assists bereaved families affected by cardiac risk in the young. You can look at its website to see its impact on cardiac arrest in our young people.

Cardiac arrest is a preventable and silent killer. There are often no symptoms and there is regularly no warning. At least 12 young people under the age of 35 die unexpectedly every week of the year from a heart condition that they did not know they had. I and various campaign organisations involved in tackling this issue believe that the number may be even higher. Perhaps even as many as 20 young people a week are lost by their families. Some 80% of those deaths occur with absolutely no prior symptoms.

Sudden cardiac death is thought to be caused by a heart condition, and young sudden adult death syndrome occurs when a cardiac pathologist is unable to find a definite cause of death. Thankfully, coroners are becoming more willing to name sudden arrhythmic death syndrome as the cause of death, which is a positive step forward, but we must continue to push for greater awareness.

My constituents, Graham and Anne Hunter, lost their beautiful daughter, Claire, two years ago from sudden cardiac arrest. Claire was only 22 and was newly married to Andy. She was a trained accountant and a mature, beautiful girl with an exciting life ahead of her. She had no prior symptoms. She was in a spa on a hen weekend, relaxing with friends in a jacuzzi after a swim. She said that she felt hot and sick, and she sadly died from sudden cardiac arrest. It took a significant time for the ambulance to arrive. We and her family do not know whether, had the spa had a defibrillator, that would have saved her life.

Claire’s family have since been screened. Heart conditions have been found and preventive measures put in place by the excellent Southampton general hospital. Graham and Anne’s lovely daughter Claire was cruelly and tragically taken from them, and that terrible loss exemplifies what is happening to other families in every community and constituency each week. Graham and Anne are sitting in the Public Gallery listening to and watching this vital debate, and I pay tribute to them and to many other families across the country who have lost their precious children to such a cruel and sudden tragedy. Such losses are often preventable, which only makes them even more heart-breaking.

I congratulate the hon. Lady on securing this important debate. Does she agree that this tragic condition seems to hit fit young people, such as my constituent Mr Philip Evans who was a family friend? He was a keen bodybuilder and he tragically died from this condition.

I agree with the hon. Gentleman. We are losing fit, young, capable, able and good people, and we must do something about it. We bring our children into the world. We school and train them, and above all we love them and get them ready for a future—our future. Economically, there is a case to do something, but the emotional case is priceless.

Screening has been proven to work. In Italy, screening is mandatory for all young people who are engaged in sport, and cases of young sudden cardiac death have fallen by 90%. In this country, free screening is provided only when a young death has occurred in the family, or through the work of Cardiac Risk in the Young and the help of affected families who fundraise for that cause.

I congratulate my hon. Friend on securing this important debate. My constituent, Sam Wright, who was a very fit young man, died suddenly. His friend, Danielle West, has fundraised on behalf of CRY and secured enough money to screen all the sixth-formers at the school that Sam used to go to. Three of those sixth-formers have had further tests. I do not know the results of those tests, but three people who knew nothing may have a condition that can now be treated. My hon. Friend’s campaign is valuable and we should continue with it.

I absolutely agree. The UK National Screening Committee has refused to make a comprehensive offer of heart screening for young people in the UK, which I think is a scandal.

I lost my own daughter three and a half years ago from sudden unexplained heart failure. I am a supporter of CRY, and I appeal to the Government to listen to what is being said in this debate. Many young people between 14 and 35 die suddenly from an unexplained cause, and that is a personal tragedy for the families and friends of those young people. I came to this debate unsure of whether I would be able to intervene, and it is a great grief and something that is with me all the time. I wish that people would take this issue more seriously.

I thank the hon. Gentleman for such an eloquent and kind intervention. I am sorry for his loss. We think of all the children in this debate.

How can it be right to wait for tragedy to strike before taking action? That is truly unacceptable. I urge the Minister tonight to review the policy and to reverse it. As with many other preventable illnesses, screening needs to be part of the standard healthcare provided to our young people. Screening has more than just general benefits: it helps to prevent future diseases. Heart UK estimates that if 50% of people with the potential genetic condition known as familial hypercholesterolaemia or FH—a naturally occurring high cholesterol condition—were diagnosed and then treated, the NHS could save £1.7 million per year on treatment. Truly comprehensive heart screening is a good measure for now and a perfect insurance policy for the future.

I pay tribute to my hon. Friend for this fantastic opportunity to highlight a major national issue. I also pay tribute to the hon. Member for Ilford South (Mike Gapes) for his courage in intervening to talk about a clearly incredibly fraught moment, not only for him but for his whole family and all who share his grief.

In my constituency recently, a young man was playing football when he dropped dead. Junior Dian, who played for Tonbridge Angels, could have been saved by screening. We are pleased to say that the Under-Secretary of State for Culture, Media and Sport, my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) is working with the Premier League and other organisations to introduce screening for individuals across our country. I hope very much that we will all join her in urging sporting institutions, whether relating to football, rugby or cricket, to push for this opportunity to save young people. Sudden cardiac death hits every part of society. My very dear friend’s brother, the late Earl of Shaftsbury, died in his sleep, aged 30, in New York. This hits everyone: old, young, rich or poor. We can do better. We must do better.

In Northern Ireland, we have done three things. First, schools have responded. I visited Regent House school just last week and there were 60 young people doing CPR testing—that was very positive. Secondly, we have first responders in Strangford, volunteers with a defibrillator. So far, they have had 64 call-outs in less than a year. Thirdly, the Henderson Group has purchased defibrillators for each of their shops in Northern Ireland. Those are three initiatives that can make a difference. I commend the hon. Lady for bringing this issue to the House.

I thank the hon. Gentleman. I think that is something we can absolutely pick up on. There are other ways we can reduce mortality at any age, young or old. We need to have more ready access to defibrillators and further CPR training.

I absolutely agree. That is a wonderful idea to make people aware, early on, about health intervention and what can be done through training.

I thank my hon. Friend and Hampshire neighbour for giving way and I pay tribute to her for securing the debate. Will she join me in paying tribute to organisations such as my local parish council, which has gone out of its way to put its funds towards making defibrillators available not only in the local village hall but in the local village pub, too?

Absolutely, and I thank my right hon. Friend. There is always a good reason to go the pub and that sounds like an excellent one.

My hon. Friend is being very generous in giving way as I know this is a short debate. I pay tribute to her for securing the debate and for the passion she is showing in putting her case across.

On defibrillators, will my hon. Friend join me in congratulating Solihull Lions in my constituency, which has just paid for 10 defibrillators in public places, and the cardiac nurses at Solihull hospital who, touched by the tragic case of young Miles Reid, 21, who dropped dead of a heart attack while playing football, paid for a defibrillator in Shirley Park? Will she join me in congratulating those groups and in understanding the importance of public defibrillators?

I absolutely do. My hon. Friend makes a great point about communities coming together—sadly, always off the back of a tragedy. We could be on the front foot on this issue instead.

I, too, absolutely commend this debate. Every single one of us probably knows somebody who has dropped dead. My brother-in-law’s brother, a great college friend of mine, did so, and we all know such people. We are, in particular, encouraging our young children to get into sport big time, and it gets more and more intense. Every time they get selected, they have more sessions, more training and it becomes more high profile; I would urge that we get testing going for these young people. It is often the fit and sporty ones that seem to be affected. Does my hon. Friend agree we should do something for these particular type of students?

Absolutely. Italy saw a 90% reduction when sporting people were properly targeted.

Portable defibrillators will help people with no medical training; they can provide immediate, first-instance help to all patients following a cardiac arrest. Survival decreases by 23% per minute. The UK Resuscitation Council asks for an AED—automated external defibrillator—to be present in any location where medical treatment is further than five minutes away. Clearly, that means pushing on with installing these crucial bits of equipment in every public building, and encouraging more businesses to have them.

I thank the Chancellor for listening to Graham and Anne Hunter from my constituency and to the British Heart Foundation. Some £1 million has been pledged for defibrillators for community centres and to ensure that schools are delivering CPR training awareness. This is a welcome step, but more can be done.

In my family’s case, my father died very young when I was two years old. I have had to go to my GP to ask to be monitored, and no suggestion has been made that my children should also be monitored, even though my grandfather also died young of what is clearly a potential genetic disorder. Does my hon. Friend agree that the Minister should consider how we can develop this across the national health service, thus ensuring that families are protected?

If I did not know better, I would think that my hon. Friend was reading my speech. Action is needed on GP awareness. When there is an incident of sudden adult death syndrome, the family can be screened for free to look for potential causes. This is often because the conditions require a live and still beating heart for diagnosis, although problems are also often discovered through a process of screening for genetic hereditary conditions in families. It is up to GPs to ensure that they advise family members to get screened in these instances. I want to see far greater awareness among our practitioners of the huge benefits from screening. It is absolutely critical to fight to prevent these young mortalities.

So what do we want? First, MPs, campaigners and families want free screening for every 14-year-old to be checked for the key risk factors. Whether via schools, sports clubs or the NHS, we can find a way. Last week, at Fleming Park in Eastleigh, two youngsters were screened by CRY and found to be in urgent need of follow-up. Another screening was organised in Claire’s memory and was funded by local donations.

Secondly, we want more public access to defibrillators, and new local community buildings should, through planning, have one placed in sight. That is easily done. Thirdly, we want higher awareness among our among our general practitioners that hearts need checking at any age.

In conclusion, up and down the country every week, at least 12 young people are dying from sudden cardiac arrest—over 600 young people a year, and we have heard tonight that many MPs have experienced at least one incident in their family or their community. On 14 October, the Daily Mail reported that a family from Stoke-on-Trent lost a daughter in 2006 and now a son aged 17, after swimming on a recent holiday in Turkey. Each and every incident is a tragedy. These causes of death are conditions that can be picked up by screening. I do not believe that a health Minister is often told that we can relatively cheaply and surely prevent the deaths of thousands of our young people by taking some very easy steps. This evening, on behalf of many families, I ask the Minister to do just that.

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.

House adjourned without Question put (Standing Order No. 9(7)).