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Meg Munn MP - Sheffield Heeley's voice in Parliament | Welcome
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Meg’s speech on cardiac risk in the young

Friday, March 12, 2004

Meg’s speech on the ‘Cardiac Risk in the Young (Screening) Bill’ given in the House of Commons 12th March 2004


My constituent, Jason Howell, is a lucky man. He is married to Michelle, known as Shelley, and he is the father of two children, Georgia aged nine and Tom aged seven. However, it is not the joys of family life that make him lucky. He is lucky because he is alive. Unlike many of the people whom we have heard about today and those who suffer unknowingly from the conditions that have been mentioned, Jason Howell has cardiomyopathy, but was diagnosed as having it. Now in his mid-30s, like many of the people whom we have heard about today, Jason had always played football several times a week. He worked, he never smoked and he had only the odd drink.


Six years ago, Jason had a cold. Somehow or other, he felt that there was something wrong; his situation was like that of the hon. Member for Cheltenham (Mr. Jones). He went along to his doctor's surgery, but his usual general practitioner was not there and he saw a locum. Thankfully, that doctor?from what I have heard today, this is unusual?took my constituent's concerns seriously. She told him that he needed a thorough examination, to which he agreed. To his surprise, within 24 hours, he found himself in hospital. This is a young man who must not yet have been 30 and found himself diagnosed with a heart condition?a condition that he tells me has caused his heart muscle to thicken, making it difficult to pump blood around the body efficiently.


Following that diagnosis, Jason was off work for some four or five months. During that time, he did not feel particularly lucky; he felt like saying, "Why me? Why has this happened to me and my family?" There was very little information around, and he did not know what the condition meant for him. As we have heard time and again in the debate, our health services are used to dealing with people with heart conditions who are somewhat older. There is advice around and there are support groups. Such people are told how to manage their condition and what to do. Jason Howell, who was not yet 30, did not quite know what the condition would mean for him and his family, and for the rest of his life. He did not know whether it was okay to exercise. We know that when people have heart attacks, they are often told that exercise is a good thing after a period, but he did not know about that. One doctor said that it would be okay, but his doctor said that he should not really do any strenuous exercise, as it was a problem.


Jason had worked for Black and Decker for a long time. He was a machine setter, and he had worked his way up to be a manager. The company experienced some problems, so he decided that, rather than wait to be made redundant, he would seek employment elsewhere. He got a job with a food manufacturer. Throughout this time, he generally felt well, but he had had the occasional dizzy spells, which, as we have heard, are a symptom of some heart conditions. However, he was having regular scans with nothing to worry about, and he was told that he could carry on his life as normal.


Working in a food factory meant that one day, Jason went into a fridge freezer at minus 16? C. That is the last thing that he remembers. He was later told by his work colleagues that he was missing for about an hour before somebody realised that he was missing, and he ended up in Rotherham hospital. Nobody told him that such conditions might be a problem, but he learned that extreme cold and heat were dangerous to him and could exacerbate his condition. I am not a medical expert, I rely on what other people have told me?but I am aware that the temperature meant that the difficulty that Jason already had in pumping blood around his body was exacerbated.


At that point, Jason decided that it was no longer sensible for him to carry on working. He is now at home most of the time, and he experiences occasional blackouts and dizzy spells, but carries on as best he can in looking after his children and experiencing the joys of family life, which have perhaps become more precious to him than to most of us. He has had a pacemaker fitted to help in trying to find out more about what the dizzy spells and blackouts mean. As my hon. Friend said, there are ways of treating these conditions and finding out more about them. Jason explained to me that, when he experiences dizzy spells, he can switch on the pacemaker so that it records what is happening in his heart, after which the readings can be downloaded, so that the experts have some understanding of what has been happening to him.


Jason is not just worried about himself, because he has learned that first-degree relatives are likely to be at risk. As the hon. Member for Cheltenham explained, the sufferer's children may be affected, although at this stage, thankfully, there does not appear to be a problem. Jason's children have to be scanned regularly. Like many children, they are keen on sport. Nine-year-old Georgia is a keen runner involved in a local athletics club. Jason's seven-year-old son Tom supports Sheffield United?thankfully, he is not a Sheffield Wednesday supporter?and is a keen footballer. However, the condition may affect them, and their health has to be checked regularly. Jason's brother, incidentally, was a triathlete.


While Jason feels incredibly lucky to be here, he and his family feel isolated. Tragically, most people die before they are diagnosed, and Jason does not know anyone who is living with such a condition, so there is no one with whom he can share his experience. Many families who suffer traumatic events or people who are diagnosed with particular conditions turn to self-help groups or national bodies. Cardiac Risk in the Young?CRY?has provided Jason with help and information, but he does not know anyone else who is living with the problem. He has been told that 98 per cent. of people with the condition die before they are diagnosed. He is lucky to be here and fortunate that the locum GP had the skills to recognise the problem. However, although he has the support of his friends, family and CRY, he feels isolated. Who can he talk to about his experiences and situation? He is 35 and looking ahead, but there is no one else in his position, which is difficult and isolating for him.


CRY has been enormously important to Jason and his family in providing information so that they can understand his condition more. When someone is first diagnosed with a condition or something happens to a family member people want to know what services and support are available, how they can manage the condition, what their family should do and what is the best way forward. Organisations such as CRY help families to live as normal a life as possible.

One has only to visit a family such as Jason's to see how important it is that people know about their condition. Having the opportunity to find out whether something is wrong and being able to manage it makes a huge difference. I do not know a great deal about my constituent's medical details, but if he had had the opportunity to be screened and had discovered his condition earlier, he might have done less damage to his heart. It is difficult to answer such questions retrospectively, but the use of screening to identify such conditions at an early stage is important.

I therefore congratulate my hon. Friend, who is also a good friend of mine, on choosing to tackle the issue in her Bill, which raises awareness and seeks to save lives. Those of us who have the honour of sponsoring it have learned more about certain heart conditions today and, because of the way she set out her aims and because of the case studies provided by CRY, we realise that it is even more important than we originally thought. Ultimately, it gives families who have suffered terrible losses or who, in a few cases, are living with such conditions hope that something can be done to prevent young people from dying suddenly.


The Bill also provides hope for the children and relatives of families who have suffered. We live in an age in which we generally expect to have a long life and do not expect children and young people to die, so we forget that many people have suffered the deaths of young children and relatives. We do not share such experiences enough and, as has been said, we do not bring the statistics together, so we think that they are isolated cases. Anyone who has lost a close friend, a child, a brother or a sister has experienced a tragic loss and knows that lives can be derailed. People become less able to work for a period, and may suffer from depression. The impact of someone's death on family and close friends can be huge, and we often deny that in our busy lives. We must get to grips with the problem by offering screening services, providing information and improving knowledge among clinicians at all levels, so that they know that the young person who has walked into their surgery with a seemingly innocuous problem may in fact, as in Jason Howell's case, have a life-threatening condition.


Counselling and support are important, and can sometimes be provided by close family and friends, but it is helpful at other times to provide professional services. People such as Jason Howell and his family do not just need information know about how they should live their daily lives, but a way of coming to terms with change. Jason is a young man who, like many of his friends, has a young family. Before his diagnosis, he expected to play football regularly, go to work and play with his kids, but he suddenly discovered that his life was restricted. How did he and his wife deal with that? How did they rearrange their lives, and how did their kids feel? How did they understand that daddy cannot do what he did before and how do they live with the possibility that he may have a shortened lifespan? Let us hope that that is not the case, but how do they come to terms with the problem? Support is therefore essential in helping people to continue functioning and live their daily lives.


It is good to know that it is not just in this House that elected representatives are campaigning on the issue. My local Member of the European Parliament, Linda McAvan, has campaigned with other MEPs. She first became aware of the problem when someone died from the condition at the tragic age of two. Last year, the World Health Organisation agreed to investigate these sudden deaths to try to gain some understanding of the wider situation, not just in the UK. Over 100 MEPs have signed a petition campaigning for a specific code to be added by coroners in such cases so that they can collate information about sudden death in young people, possibly from a number of different conditions. Collecting and checking the information may lead to a better understanding of the problem.


The various conditions are difficult to diagnose. The Cardiac Risk in the Young booklet states that, in many cases, there are no symptoms. How can anybody be expected to diagnose such a condition? However, there are cases in which symptoms begin to show themselves, so collating that information, having some means of looking back over it, and establishing whether the outcome was, say, four deaths a week or eight deaths a week would help us to advance our understanding of the conditions.


In summary, the life of my constituent, Jason Howell, is not what he thought that it would be?a young dad who worked, played football and played with his kids. Instead, he is living with a life-threatening condition, but believes he is a lucky man to be still alive. He wants more people to be given that chance. To do that, we must find out what can be done through screening, raising awareness of the conditions and providing information to families who have suffered terrible deaths or who are living with those conditions.

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