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Cardiac Disease (Young People)

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. 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 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. It is incredibly important that Alison Cox is a member of the expert committee. She is also the chief executive of CRY. It is impossible to say no to her. She is a fighter in every sense. If she thinks that what is happening is not appropriate, she will say so; and if it is appropriate, again, she will say so. I am delighted that she is a member of the committee. She is taking up the counselling process for all. Counselling takes place when a young person has died. We can all imagine how highly charged and emotional the situation can be. She goes in with her team and enables others to go in with their teams to explain and, we hope, to prevent the disease from occurring again. Roger Boyle, another member of the national committee of experts, and Alison Cox have achieved—quite painfully, and with a serious fight—the recognition that cardiac risk can occur in the young and an understanding of why it occurs. That is a tremendous step forward. However, my hon. Friend the Member for North Durham is right that there is still scepticism. The absolute belief is that, to have a heart attack, one must be 50, fat and smoke fags. It is not true. One can be 15 and a seriously good athlete, with an inherited heart condition that could be fatal. It is about getting that understanding and that perspective. It is difficult to believe that someone who is so superb at his or her sport can have an inherited fatal condition. Achievements to date have been excellent. I praise the work done on Teesside, most particularly at the James Cook university hospital in Middlesbrough. When my Bill was introduced and accepted by the Department of Health, the hospital had one electrophysiologist; it now has three. That is a great improvement. It widens access to specialist electrophysiology treatment, which is valuable. A cardiac genetics programme is also up and running. As I said, most cardiomyopathies are inherited, so the genetic relationship is crucial. That programme will therefore enable an understanding that, in some cases, but not all, genetics is the problem. Again, it is an incredibly valuable bit of kit. Specialist nurses are being employed to support cardio-physiologists. Again, their work filters out into the community; it is explained to groups, young people in schools and parents what could happen if a young person has palpitations disproportionate to the activity that he or she is involved in. We also have an arrhythmia clinic—a tremendous innovation. Sadly, it is available only in Redcar and Cleveland. I wish it were universally available, because it has a nurse-led team to do the screening. They support the work of the GPs, enabling them to understand when a problem is serious. They are incredibly valuable part of the complex delivery of treatment. It would be totally inappropriate not to mention the charity, South Cleveland Heart Fund. The group works in the most persuasive way to raise funds. It has provided the James Cook hospital with an evoked potential mapping computer programme, which quickly diagnoses the problems being suffered by young people. It is a most valuable piece of kit. I offer the charity a big thank you; it is deserved. Again, however, a charity is raising funds to deliver essential national health service machinery. I do not criticise, but it tells us that, despite all the money that is being invested in the system, it still does not provide the answer. The developments that we have seen in Middlesbrough are most valuable, but we still have a shortage of cardiac physiologists. There is a training process, but people have to be persuaded to become involved in that area of medicine, and a job still has to be done to achieve a full complement of cardiac physiologists. In the past four years, we have seen the all-party group on cardiac risk in the young working in a very persuasive way. We are delighted with the work of the Department of Health. The committee of experts is an incredibly valuable addition. Chapter 8 of the national framework is valuable. It is disheartening that a tragedy should have been needed to persuade Parliament and the medical profession to take seriously the fact that young people can have fatal heart conditions. I wish it were not the case, but I hope that Levon Morland's family will accept that his tragic death has made us all wake up to the fact that we should include in the legislative programme the delivery of good health through a screening process and that we should have a greater understanding of what happens when sudden death occurs. I hope that the family accepts that it was not for nothing. It was not an accident but was caused by a fatal heart condition.