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INTERVIEWER: Sudden Adult Death Syndrome has been dubbed adult cot death. It's victims are usually strong and fit, it often happens on the sport field and far from being a rarity as many as 4 young people a week fall victim to Sudden Death Syndrome. Those affected usually have no warning that they suffer from a serious heart problem and often symptoms like dizziness and breathlessness, which would sound alarm bells in middle age, are dismissed. There are now calls for a nationwide screening campaign involving all young people in a bid to prevent such tragic deaths. Maray Devlin reports.
MARAY DEVLIN: Sudden Adult Death Syndrome is the umbrella term for 11 major causes of unexpected heart failure in young people, including Hypertrophic Cardiomyopathy an inherited condition which causes abnormal thickening of the heart muscles. Caroline Gard's son Andy collapsed and died 3 days before his 18th Birthday.
CAROLINE GARD: He was very fit and healthy and played lots of sport. His favourite sport was probably Hockey. He had just finished taking his A levels and had plans for university and had just actually organised his year out. One Sunday afternoon he went upstairs to get changed because he had a tennis game and a friend came round a half an hour later or so to see him. When they called upstairs there was no reply so they went up to see why he wasn't hearing them and found him collapsed on the floor. I believe he was probably already dead, but they did what they could to revive him - the paramedics and so on - but to no avail.
MARAY DEVLIN: An inquest ruled he had died from a sudden heart attack. Probably the best known victim of Sudden Adult Death Syndrome is Daniel
Yorath. He collapsed and died after a kick around in the garden with his father Terry in 1992 when he was just 15. His sister Sports Presenter Gabby Yorath says his death was totally unexpected.
GABBY YORATH: There was no symptoms at all to us physically that he had anything wrong with him. He played probably 4 or 5 times a week for various football teams. He was a fantastic footballer. I used to go running with him on a regular basis and he was always much fitter than me in that department and we ran a lot. He played golf. He played every sport going. Every day he was doing something, and there was never any sign that there was anything wrong with his heart.
MARAY DEVLIN: It has been described as the adult version of cot death, but if identified early enough those with potentially fatal heart conditions can be treated successfully. James Major son of the former Prime Minister now uses a pacemaker after his condition was identified. Stephanie Crookshank who collapsed 10 years ago when she was just 26, has also been treated successfully.
STEPHANIE CROOKSHANK: Well I was in a Gym on a bicycle just like this and I had a Cardiac Arrest and my heart stopped beating. I was very fit I used to enjoy working out. It could happen to anybody with this condition but I was lucky I was in the right place at the right time. I've had various medications and I have now got an internal defibrillator and a pacemaker and so I can live a relatively normal life.
MARAY DEVLIN: Cardiac abnormalities can often be detected with a simple Electrocardiogram test. In America those involved in sporting activities are routinely tested and there are now calls for all young people here to be given ECG's in a bid to reach those most at risk. Caroline Gard believes if there had been some form of screening on offer, her son Andy might still be alive.
CAROLINE GARD: If he had a condition that might have caused this sudden death, then we would have had a chance to do something about it. Perhaps he would have changed his lifestyle and not been quite so active. He could have done other things. Obviously a loss of a child in any way is totally devastating. However, if you lose a child to a Sudden Cardiac Death and you later discover that there was a test available that might have actually identified the problem it makes you feel initially angry. Sad. I feel very determined that we should try and offer this test to other parents. It's too late for us. How many more people have got to die before someone will say OK perhaps we should look at a testing programme of some sort.
INTERVIEWER: Caroline Gard ending that report by Maray Devlin. Well would screening be the answer? Alison Cox is Founder and Chief Executive of an organisation called CRY, which stands for Cardiac Risk In the Young. Belinda Linden is from the British Heart Foundation. Alison given the obvious cost of a screening programme what is your argument that we need one for all young people.
ALISON COX: Well in Italy every single person in sport at any age and at any level has to have a screening, an MOT effectively, every year. We MOT our cars and I believe that we should be MOT`ing our kids in this country. Kids when they have these symptoms will often go to their GP or local Hospital and because they are young the symptoms will be dismissed. There are very often symptoms that aren't
recognised. Symptoms are a high risk group, just like families who have suffered a tragedy are a high risk group, but the worse thing is when there have been symptoms that have been dismissed because of lack of awareness. A screening programme will raise awareness as every screening programme does.
INTERVIEWER: From what you`re saying it sounds as if the medical profession,are not - forget the population for the time being - the medical profession are simply not aware enough that these are warning signs of something very serious.
ALISON: Yes they can be sinister, and the dreadful thing is you are not going to have an attack of an illness that you then recover from. The potential with this is that it is a sinister problem and it will kill if not found.
INTERVIEWER: Do you have any idea of the cost of any such programme?
ALISON COX; Well CRY is instigating a screening programme working with deaths within the community where the families will want to fund raise as a retaliation to what has happened to them and we charge £25 per
ECG. We have raised money for the ECG with the family and that is the service that we want to offer within communities. We are also working with getting Ethical Approval, working with government in five different communities within the UK where we will be doing ECG testing and are combining this with research on the psychological impact of screening within schools. Because we are often accused of being alarmists, we want to see if we are being alarmists because we believe we are being alertists and the test will reassure. This programme is going to be an important
programme. The research of the psychological impact is under Professor Steptoe who is one of the leading psychologists in this country involved in research and screening.
INTERVIEWER: OK let me bring in Dr Muir Grey who is Director of Research at the National Screening Committee, the body which advises the government on screening
programmes.
What is your thought on this, are you compelled by the argument that Alison Cox has just outlined?
DR MUIR GREY: When we last reviewed this about a year ago, we were not compelled by the arguments about hope operation screening for
Cardiomyopathy. There were a number of important bits of evidence missing and we are very pleased to hear of CRY's approach seeking Ethical Approval. It is going to gather data. So I am looking forward to meeting with them to get more information about what their plans are.
INTERVIEWER: But why not. Why can you not at the moment say yes or no?
DR MUIR GREY: Well we have said no at the moment because there is insufficient evidence for us to say this would do more good than harm at reasonable costs. These things we have to decide in the National Screening Committee. And when we are dealing with a healthy population as we have said we have to be doubly careful about the possible risks to the population, the size of the benefit and the other use that can be made of the resources. So in screening we are very careful before we start a programme that we know exactly where it is going to go in the next 3 to 5 years and all that evidence is just not there at the moment. So we need a good pilot scheme like this one.
ALISON COX: But when you listen to families, everybody who has been touched by this would say, if only we had known. Surely a screening test must be better than no screening test?
DR MUIR GREY: Not necessarily. Very often screening, the fact that you can find something early does not necessarily mean that you can get a better outcome. Now with Cardiomyopathy for example there are issues about what is the best treatment to choose, what is the precise diagnosis. I missed I am afraid because of the connection the early part of the debate. Will genetics have a part to play in determining which type of
Cardiomyopathy? So a stitch in time does not necessarily save nine. And it can have a lot of adverse affect in terms of the psychology. Every death is a tragedy and this is a very important cause of death in young people so we are very interested to hear the results of the CRY study.
INTERVIEWER: Well Alison I know you want to respond.
ALISON COX: Yes. We had some research which came out in February 2000 in the New England Journal of Medicine, which said that this is absolutely not so. That actually if a person is diagnosed that they are increasingly finding that defibrillators are extremely effective in dealing with these conditions and certainly all the evidence from Italy, which is the country that has a mandatory screening programme for all athletes, is they have not had any sudden deaths in sports since they introduced this. All the athletes that were eliminated are still alive, and in fact they are OK. Until somebody does something it is a chicken and egg situation, until we can do it and get on with it. We are being told that when people are being referred to the National Screening Committee, (which they all do once they find out about you) that you are basically saying its not cost effective. We are left saying to people, well lets have a go and do it, and you are saying to people don't do it. So it is extremely difficult for us to be actually getting anywhere.
DR MUIR GREY: Well what I'm hearing is that you are proposing and starting to gather information and we look forward to that. That will be very useful.
ALISON COX: But you are saying also, or government is saying anyway, that they are in touch with voluntary organisations that deal with these conditions. In 5 years government has never been in touch with me. Not one single piece of dialogue until this morning when we are both on a national radio
programme. I have been invited to Poland because they are so interested in what we are doing. I am going to go to a conference over there because they have heard about CRY, and yet our government here in 5 years has never passed a sentence with me. I find that bizarre.
INTERVIEWER: Well clearly Alison you feel that the debate has not even really started,
ALISON COX: No.
INTERVIEWER: Well maybe it has today now! But is it possible that a screening programme could have a negative effect. If you are screened and told that you have a disposition for Sudden Adult Death Syndrome is it not the case that you may live your life in terror. That's unhelpful.
ALISON COX: No, absolutely I don't think so. Obviously there are some people that are going to respond negatively, just like they will to anything else in life. You only have to hear Caroline Gard say that not doing anything is no excuse for doing nothing. For God`s sake give people the opportunity to at least be able to decide this for themselves. The whole of the next century is about medicine being, or us being, pro-active in medicine and finding out for ourselves what's going on. Give people the chance to actually have that.
DR MUIR GREY: Well the Italian report says, the last report suggests, that it may have prevented sudden death. I think we have got to look at the strength of the evidence and weigh it all up.
INTERVIEWER: OK well let me bring in Belinda Linden here from the British Heart Foundation. We have a “let's have a screening
programme” and “lets not have a screening programme position.” Where do you stand?
BELINDA LINDEN: What I have to admit is it`s devastating for any family, the whole community, when someone dies suddenly. Even more so when something could be done to prevent it. However we need to look at sport definitely. Athletes, professionals, that`s being done at the moment. We need to look at people involved in athletics because that's when the triggers occur more often than not and as with your examples athletics is a problem and the people who had tragic situations were involved in intensive sport mostly.
INTERVIEWER: So you are foreseeing a situation where if you want to start to become or either if you are active, then you can effectively go and get yourself a MOT.
BELINDA LINDEN: I think it is realistic to have a focus. I mean it is not just looking across the spectrum. It is looking at people at high risk. Anybody who has a family member who has died suddenly will know that they have a 50% risk of having a problem as well. So maybe we need to be more aware as professionals. The public need to be more aware if there is anyone in the family who has died suddenly or unexpectedly. We need to find out what we can do and really no doctors should avoid screening in that situation.
INTERVIEWER: Would that not then drive a lot of people to their GP?
BELINDA LINDEN: It may do but if there is a family history of somebody in the family having died suddenly, it's for the GP to know about it because something could be done then. So we would say yes screening is essential with certain people but we like to be realistic too. Screening is something that we need to look at the focus and look at high-risk people and see how effective that is.
ALISON COX: But high-risk people are people with symptoms. How can we raise awareness of symptoms except with our screening
programme. The Breast Cancer screening programme has been immensely successful. Mammograms z aren't actually any more successful than self-(screening) examination. But the mammograms put in place the awareness to make people realise that they should be self (screening) examining. That's why we want a screening programme because it will raise awareness. High-level athletes very often de-select. There are very few deaths in high level athletes. Most of the deaths in sport are ordinary participants.
INTERVIEWER: OK we must leave it there, I believe that some awareness may have been raised this morning!
Thank you very much to Alison Cox, Dr Muir Grey and Belinda Linden.
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