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Westminster Hall

Tuesday 10 June 2008

[Mr. Bill Olner in the Chair]

Cardiac Disease (Young People)

Motion made, and Question proposed, That the sitting be now adjourned.—[MsDiana R. Johnson.]

9.30 am

Mr. Kevan Jones (North Durham) (Lab): I am pleased to have secured this debate during arrhythmia awareness week. Early-day motion 617 has been tabled by the hon. Member for Hereford (Mr. Keetch), and it is timely to focus this morning on one aspect of arrhythmia: its threat to young people.

I declare an interest as the chair of the all-party group on cardiac risk in the young. When I was elected in 2001, I was, like many people, totally unaware of the tragic consequences of cardiac death in the young. I came to it, like many people, because of a related personal tragedy: the death of Levon Morland, the son of my good friends, Jeff and Sandra Morland. Jeff was a full-time trade union official for the electricians’ union and then the Amalgamated Engineering and Electrical Union.

Jeff’s son died in terrible circumstances. He went to bed one night and when his mother went to wake him the following morning she found him dead in bed. The circumstances were heartbreaking and, unfortunately, they are repeated weekly throughout the country. Since then, I have worked closely with the charity, Cardiac Risk in the Young, and I pay tribute to the founder and chief executive, Alison Cox, who works tirelessly on behalf of families and supports people such as my friends, Jeff and Sandra Morland.

CRY’s work has three main strands. It raises awareness of sudden cardiac death in the young, saves lives through some of its work on research and screening, and reduces the anxiety of family members who are left behind. Because sudden cardiac death in the young is not well known, it does not receive great attention, and I pay tribute to CRY’s work during the past few years in raising awareness. We all assume that people die of heart attacks in their old age or middle age when they develop symptoms, but sudden cardiac death in the young is much more common than we like to think. Research so far suggests that one person in 500 has some sort of hypertrophic cardiomyopathy, making it five times more common than cystic fibrosis, which is well known.

A recent study in Iceland is worth examining. It suggested that 1.47 of the 100,000 population aged under 35 die of sudden cardiac failure. That major study examined death certificates spanning 30 years and found that the incidence was higher in men than in women. The figures reinforced CRY’s message that 400 apparently healthy young people die every year, which is eight young people a week. I shall explain later why some of those figures are not recorded.

The all-party group that I chair now has 112 right hon. and hon. Members, and during the past few years we have worked with CRY and CRY families. I pay tribute to those families who have lost a young person
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because anyone who meets them can only be inspired by their resilience and determination that some good should come out of their personal tragedies. That is expressed in two ways: fundraising to enable CRY to continue its work, and their enthusiasm in trying to spread the message. Sandra and Jeff Morland are an example. Since their son’s tragic death, they have raised some £100,000 for CRY, ably assisted by Mr. Jack Doyle, another former trade union colleague, and my hon. Friend the Member for Stockton, South (Ms Taylor). They have worked tirelessly to raise money, and that is repeated throughout the country by CRY families. I know that Alison Cox and CRY’s officers greatly appreciate that, because those families work hard to ensure that some good comes out of their tragedies.

One issue has been to raise awareness, and I played a small part in CRY’s postcard campaign in 2004. It was launched in every region and encouraged CRY families to write to MPs and other opinion-formers, and to the devolved Administrations to draw attention to the tragedy of the eight young people who die weekly from sudden cardiac failure. I understand that the campaign will be relaunched this year. It is a dramatic way of raising awareness of sudden cardiac death in the young. The dramatic front page is a postcard with eight photographs of young people. They are not models, but young people who have died of sudden cardiac failure. That brings the issue home.

I was at the launch of some of the campaigns, and meeting the parents or partners of the people shown on those postcards brings home the issue, especially when they explain not only how those young people died, but what they were doing. It is difficult for many people to understand the tragedy, but there is a story to each death. Many of those young people were active in sports and many, like Levon Morland, were just starting out on their professional lives. The issue becomes personal when one sees the photographs on the postcards.

I pay tribute to my hon. Friend the Member for Stockton, South, and I am pleased that she has been able to attend this debate. In 2004, her private Member’s Bill paved the way for a new chapter on arrhythmias and sudden cardiac death to be added to the national service framework for coronary heart disease. I pay tribute to the Minister at the time who took that on board in the Department of Health and recognised that that new chapter was important. It was not just written and set in stone; it was developed over time and we must continue to revisit it. It has raised awareness of sudden cardiac death in the young up the political agenda and within the medical community.

Another issue in which CRY is involved is saving lives through testing and screening with electrocardiograms for young people. I accept that that is controversial and that some members of the medical profession are sceptical about whether that is the correct way forward, but having seen the evidence, I am a strong believer that mandatory testing for young people is the way forward. I shall refer to some of the international evidence showing that it has a positive benefit. If it could avoid just one photograph being on the postcard in future, it would be worth it.

Research in Italy has shown that since 1982, any young person taking part in competitive sport must be medically screened with an ECG. That research has shown that some 2 per cent. of those screened have
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some type of cardiac arrhythmia. In the research done since then, the figures speak for themselves. From 1979-80 to 2003-04, the annual rate of sudden death among athletes decreased by 89 per cent. That is an astounding figure. One might ask whether that is a one-off, but during the same period, instances of sudden cardiac death among the non-athletic population in Italy did not change at all. Those figures show that screening is identifying individuals with the problem. Likewise, if we compare the figures with, for example, the United States or other countries where people are not screened, the contrast is clear. The Italians have got it right and have shown that screening helps to identify young athletes and others who are at risk.

The other problem associated with sudden cardiac death in the young is that although it is the people who die on the sports field who sometimes get the publicity, many people die away from the sports field. In addition, some people have self-selected themselves out of competitive activities because they have exhibited certain symptoms. The arguments show that screening is well overdue. CRY is setting up testing centres in different parts of the country, and I am working with it to try to get one in the Freeman hospital in the north-east. We are in negotiations on that. Having testing centres would help many families.

Controversy over testing is caused by people saying that it raises anxiety levels among the individuals concerned and their families and siblings. It is clear that some of the conditions are hereditary, and that siblings can be found to suffer from similar problems. It is important to tackle the issue of anxiety, and to be fair to CRY it is trying to do so. It is not just a matter of randomly testing people and leaving them. If, for example, someone finds that they have sudden cardiac arrhythmia, support needs to be given afterwards—not just to the individual youngster, but to family members.

I am convinced that testing is needed. The next major step forward that we need to campaign for is to have a similar system to that in Italy. That would mean that young people who take part in competitive sport must go through some kind of ECG test. We should also consider whether to go further and build testing into school medicals. For example, I believe that when youngsters go from primary to secondary school, they have a medical—I do not know whether they still do, but before I went to secondary school, I had one—and I would welcome consideration being given to building the test in at that stage.

Within sport, there has been some movement on the issue. I pay tribute to the Secretary of State for Culture, Media and Sport. When he was a Back Bencher, he spoke about the problem at the first event that I held on the subject. He, too, came to the issue because a constituent had raised with him a problem related to a personal tragedy. I was pleased that, a few months ago, the Chancellor of the Exchequer allowed CRY to use No.11 Downing street to launch profiling screening in sport—along with the Football Association, the Professional Footballer’s Association and the Football Foundation. The Secretary of State has been pushing the issue with the Football Foundation, and I know that the Minister present also attended the event. It was a great event and many of the CRY families were there and gave a lot of support. They are raising awareness of the matter among
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young footballers. The FA and the PFA are introducing voluntary screening for 16-year-olds and are considering whether mandatory screening can be introduced across the board. If organisations such as those support the campaign of awareness, it does a great deal of good.

The concentration on sport over the next few years in the run-up to the Olympics in London will also provide an opportunity to raise the issue. CRY and Alison Cox are working hard to raise awareness among the professional bodies of other sports. The Olympics is a great opportunity to try to do something specifically in relation to cardiac risk in the young and screening.

I mentioned the work of the all-party group, but I must also thank the Department of Health because it has been proactive not only in listening to what I and other members of the all-party group have said, but in working closely with CRY. A few weeks ago, I was pleased to attend the launch of the new fast-track pathology service for coroners at the Royal Brompton hospital. The service is ground breaking and I do not think that it is provided anywhere else. Dr. Mary Sheppard—one of life’s characters—is a dedicated clinician in that area. Under the service, coroners can send away the hearts of young people whom it is suspected died from sudden cardiac conditions and get a fast-track diagnosis.

The service, which has been funded by CRY and by the fund raising efforts made on behalf of those young people who have died, does two things. First, it gives a fast-track solution to coroners and allows them to get expert advice and diagnosis on what the young person died of, or what the problem with their heart was. Secondly, the service helps families by providing a quick turnaround on a diagnosis. Having spoken to many CRY families, I know that one of the things they ask when a young person who has been healthy until that day dies is, “Why have they died?” They need an answer to that and the service is invaluable in providing that.

Mary Sheppard is also building up the research and data on the subject, which I know CRY is dedicated to doing. It is only by incrementally building up the data that we will get a better understanding of why healthy young people suddenly die. On a note of criticism towards coroners, it can take many months or possibly a year to get a diagnosis, and the speedy service helps with that. The service is also important because it allows siblings to be tested. It is clear that if a young person has died, their siblings could also be affected. Early intervention and screening is important in that regard, and it also helps with the associated anxiety and with answering the question of why this happened.

I turn to the forthcoming coroners Bill, which I understand is in the draft programme and will be in the Queen’s Speech in the autumn. CRY and I have pressed hard for that legislation. The current coroner service is patchy and is based on an archaic system. When I was in charge of public health in Newcastle, I remember being told by the chief officer that I had to appoint a coroner. I said that I did not realise that that was my responsibility, to which he replied, “Oh yes it is.” It was only when I had to go through the process of appointing Newcastle’s current coroner, who is a very good individual, that I realised how ad hoc the system is.

We need not only a well-resourced coroner service—it will take money to achieve that—but a system whereby sudden deaths are examined in detail and treated uniformly.
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The difficulty at the moment is that if young people die suddenly during sport—for example, in a swimming pool, while riding a bike or even by falling out of a tree—their death is put down to an accident, when in many cases they died because their heart stopped beating. In a number of cases, the deaths of individuals in swimming pools have been put down to drowning—a tragic accident—rather than to sudden cardiac failure. It is important that we establish a standardised system for coroners throughout the country, so that cases can be referred and the data properly collected. I do not think that the data are properly collected at the moment. I hope that when the coroners Bill comes before Parliament in the autumn, the Minister taking the Bill through the House will meet representatives of CRY so that she can hear about issues that need to be included in the Bill, because I think that coroners, too, would be educated by some of the wealth of information that CRY has obtained.

The campaign to raise awareness is aimed not only at the general public, but at GPs. Some GPs clearly understand the subject, are on the ball and are aware of the referral process and what the possibilities are, but sometimes we expect GPs to be experts on everything, and this area is a specialism. Part of the work by the Department of Health could involve saying to GPs, “This area needs to be looked at closely.” I talked to Alison Cox this week and discovered that only last week, CRY had a case involving a young chap of 27. He had visited his GP with swollen ankles and breathlessness and was treated for tonsillitis. Unfortunately, two days later he collapsed and died. Sadly, that is not an isolated incident. There are numerous cases of young people having presented with symptoms of cardiac arrhythmia, yet that has gone undetected. Levon Morland was diagnosed and more or less told to get on with his life, but there are simple procedures that can be followed. Pacemakers can be fitted and other things can be done that will ensure that people do not suddenly become another statistic in the long list that we already have. Trying to get that across to GPs is important, and that is one thing that the Department of Health can do.

It has been a great privilege to work with CRY over the past six years. It has been a great privilege to work not only with Alison Cox and her team, who are very dedicated and passionate about ensuring that young people do not become another statistic, but with the CRY families. Many people are cynical these days and say, “Oh, what can politicians or MPs do?” Well, as a Member of Parliament, if I can help to avoid one more family going through the tragedy experienced not only by Sandra and Jeff Morland but by the many families whom I have met through CRY, it will all be worth it.

9.53 am

Ms Dari Taylor (Stockton, South) (Lab): It is a pleasure to serve under your chairmanship, Mr. Olner. I congratulate my hon. Friend the Member for North Durham (Mr. Jones) on securing this very important debate. In March 2004, I had the great privilege of presenting to the House the Cardiac Risk in the Young (Screening) Bill. More than 100 hon. Members wanted to sponsor my private Member’s Bill and, on the day, the Back Benches were reasonably full of Members speaking to the substance of the Bill.

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As my hon. Friend stated, the Bill was inspired by the tragic death of Levon Morland. He was an energetic, athletic 22-year-old—a young man with his life before him. In fact, those were the words that his consultant used: “Get on with your life.” He could have had an operation, but such operations are pretty nasty affairs and that was especially so at that time, so his consultant said, “Get on with your life.” The fact is that he has no life to get on with. The heartache that that has caused his family has been monumental. The community and many of us who worked with the family, especially Jeff Morland, as a trade unionist, understood clearly the depth of the heartache that they were going through.

Inevitably, questions were asked again and again about the tragic death of Levon Morland. The belief was that it was a needless death, and the hope was that we could start to understand why he died when he had been diagnosed with Wolff-Parkinson-White syndrome and was receiving medical support. How on earth did it happen? Levon’s death caused us to ask many questions, and we became more and more informed about the genetic inheritance of diseases that cause heart problems—cardiomyopathies—specifically in young people who are particularly athletic. As time went by, we understood more and more about such diseases, and with that understanding, we became more and more convinced that more widespread screening and easier access to screening would enable us all to understand the symptoms and the causes of that fatal heart condition.

Significant to that process was, without a doubt, Cardiac Risk in the Young and particularly Alison Cox, the founder member and chief executive of the charity. There was very close support from Dr. Sanjay Sharma, who is a heart specialist at Lewisham hospital. Those people put an enormous amount of time and energy into persuading politicians and the medical profession that there was a real problem with cardiac risk in the young that needed careful analysis and understanding. Once they had attempted to do that with the medical profession, they attempted to do it with politicians. We are never the easiest group of people to persuade of anything, but they convinced us that, with the appropriate screening and the right pathology, people would begin to understand the genetic nature of those diseases and, with that understanding, put together treatments that could be effective and prevent the needless deaths of young people.

That is where we started, and my hon. Friend the Member for North Durham clearly outlined much of the process that we went through, but it is appropriate to add that we managed to persuade the Department of Health. We got support from the Minister, but we also got support from Dr. Roger Boyle, who is the Government’s heart tsar. He understood that there was a gap in the provision and in the understanding of cardiac treatments, and when I withdrew my private Member’s Bill from the Floor of the House, I was offered a national service framework. For me, that became a medical model that would enable people to understand the symptoms that young people were expressing.

Those symptoms were often breathlessness disproportionate to action or blackouts or fitting, and medics, especially GPs, were keen to say that that was a problem of stress or asthma or had another cause. Slowly but surely, with Dr. Boyle and the national committee of experts that he set up, those myths were
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being exposed. We have seen that national framework introduce a process whereby individuals who experience episodes of sustained palpitations or unexplained impaired consciousness trigger in the health service either ECG monitoring or echocardiography. That begins to give medics an understanding of irregularities in the heart- beat.

The national service framework has also put together a suitable bereavement package, so that parents and families can understand what has happened, and through that understanding, they can begin to cope much better. Sudden death is a hideous thing to have to manage, especially in young people.

Added to that, we have the expert post-mortem, which is crucial. It is absolutely and profoundly valuable, because it centrally defines causation. Without it, we will not know what caused the heart attack. The post-mortem has resulted in a welter of research, explaining why Marfan’s disease, Wolff-Parkinson-White syndrome and the whole group of cardiomyopathies occur.

With that knowledge, medical services are beginning to become much more specifically related to the needs of young people. We are starting to evaluate families that have had cardiac diseases; that is critical, because if there is a genetic trace, the children have a 50 per cent. chance of inheriting the disease. It is crucial to see the trace working.

All in all, I believe that the national service framework and the committee of experts have been working in a most persuasive way to enable us all to understand what is happening and what medical provisions should be put in place. I wish it were as perfect as I want it to be, but it is not. The charity, Cardiac Risk in the Young, and the Back-Bench group are constantly pressing for better local understanding. We hope that the national service framework is being fully implemented, but we are aware that it is not.

My hon. Friend the Member for North Durham said that, in Newcastle, people are still pressing for a piece of kit that will enable effective diagnosis. That has taken from 2004 to 2008. We are four years down the line: how many more children and young people have died? Four a week? Eight a week? That is the scale of the problem; it is also the scale of the need. Good work is being done, but there is more to do.

We are—specifically, I am—concerned that GPs still do not understand the symptoms that they often see; they are not quickly tying those young people into the effective medical processes that could diagnose and offer treatment. There are gaps in what is being delivered, but I assure the House that what is being delivered is infinitely better today than it ever was.

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