I welcome members to this discussion with the Sudden Cardiac Death in the Young Support Group and welcome its representatives, Ms Mary Vasseghi, Ms Monica Martin, Ms Jane Williams, Ms Ann Simpson, Dr. Mahon, consultant cardiologist, and Mr. Giffney, clinical training specialist in resuscitation and trauma. Before I ask them to make their presentation, I draw attention to the fact that members of this committee have absolute privilege, but that same privilege does not apply to witnesses appearing before the committee. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the House or an official by name or in such a way as to make him or her identifiable. I invite MsVasseghi to make her presentation and committee members will then ask questions.
Sudden Cardiac Death in the Young: Presentation.
Ms Mary Vasseghi
I thank the Chairman and the committee for having us here this morning and giving us this opportunity. Dr. Mahon and Mr. Giffney have been introduced by the Chairman. Ms Ann Simpson lost her 19 year old son to sudden cardiac death in May 2005. Ms Jane Williams lost her son aged 23 to sudden cardiac death in June 2005. Ms Monica Martin lost her son aged 16 in May 2005 to sudden cardiac death and I lost my son aged 18 in May 2005 to sudden cardiac death.
There is a silent killer among us and it is sudden cardiac death. This is a complex medical problem, not only in Ireland but worldwide, and it kills thousands of young people every year. There is a need for further information and understanding and that requires sustained medical research. There is a widespread lack of awareness and there is insufficient action. Although I am aware that many members of the committee are medics, I have brought this presentation right down to a basic level for those who know nothing about it.
Cardiac problems are the most common congenital birth defect. Cardiac problems will not always result in death, but we all are living our lives as though there is nothing wrong with our hearts. Our heart beats 104,000 times per day for decades and many people will have undiagnosed conditions some of which can be serious. It is impossible to test everybody's heart. Therefore, it is vital that we have structures in place in order that if there is an event, something can be done. Let me put a straight question to the committee. Do you have defibrillators in the Houses of the Oireachtas? I hope so.
We do.
Ms Vasseghi
The heart is the only organ that can cause instant death if it stops working. If the person is to live, the heart must be restarted within minutes. The only way to restart a normal rhythm is through CPR and a defibrillator. The 4,500 to 5,000 people who die every year from sudden cardiac deaths are not all young. It is estimated that one or two per week — we suggest more — are under 40 years of age. The annual figure of 4,500 to 5,000 means that 18 people per day will suffer a cardiac arrest. This is a huge number to die from a cardiac event per day.
In contrast to most other medical problems where we have an illness and no cure, here we have a cure but do not know everything about the illness. The cure is defibrillators. It may sound crazy to say Ireland could be the first heart-fit country in the world, but it is possible if we think about it. The reason I believe it possible is that we have a low population density and work in tight community networks. It would not cost the Government much because communities would fund the defibrillators themselves. Under health and safety legislation defibrillators could be made mandatory in workplaces, hotels and clubs. In the United States, successful court cases have been taken against a fitness club and a school that did not have defibrillators. There was no legislation in the States governing whether defibrillators should be available, but it was decided that best practice and common knowledge dictated they should be available where there were sports facilities or many children.
The last page of my presentation provides a quick rundown of sudden cardiac death for those people without a medical background. Approximately 70 to 100 people under 35 will die in Ireland every year from sudden cardiac death and one in 500 people will have an undetected heart disease, mainly related to cardiomyopathy. We know sudden cardiac death occurs more often in males and also more often in athletes.
When a sudden cardiac death occurs, the heart stops working without warning. Most cases are related to undetected heart disease. We need to make people aware that this can happen to all age groups, to adults and children. It can happen anywhere or any time and is not always associated with sport or effort. It can occur in outwardly healthy people and, unfortunately, where there may have been no previous symptoms.
Symptoms that may indicate a person is at increased risk include an abnormal heart rate; breathlessness on effort; chest pain on effort; dizziness; fainting; and a fast heart rate. Very simple tests can diagnose between 50% and 70% of those who die from sudden cardiac death. These tests involve the three Es, a medical examination, an ECG and an echo.
We have all been affected by sudden cardiac death and I will not even try to convey the devastation it causes. The best chosen words cannot describe what happens. People believe they have a healthy child. I know committee members have children and believe they are healthy, just as we did. The parents of those who died thought their children were healthy, but death came in seconds, out of the blue without any warning. When such a death occurs there has been no preparation. This is in total contrast to death from illness. Even following an accident there is an obvious and direct link between what has happened and the tragic outcome.
Dealing with loss from a sudden cardiac death is compounded by the fact that those who lose a child in this way have no idea what has happened. We go to the morgue, are shown our children but do not know what happened. It could have been a brain or tummy haemorrhage or anything. We walk out of the hospital knowing nothing and nobody tells us what to do, where to go or what to do next. Afterwards, when parents hear there was a cardiac problem — if there was a cardiac problem — they get crushing feelings of guilt. They feel guilty because they feel they missed something or should have known about it. They have a duty of care to their children and feel they should have known this might happen or how it could happen. When they learn the problem can run in a family, they are worried it will happen again. A sudden cardiac death causes devastating grief that does not just affect the emotions but has serious consequences.
The documentation in the blue folder supplied to committee members illustrates personal stories. The introduction, which is three pages long, was written by Dr. Susan Delaney, managing director of the Irish Hospice Foundation which trains counsellors to deal with particular types of bereavement. There is a lack of structure to services to help parents when a sudden cardiac death occurs. There is no pathway to information and support. A person may be lucky enough to be given the coroner's number when leaving the hospital and be told to ring it in eight weeks' time.
Families do not know what to do in the case of a sudden cardiac death and often turn to their general practitioner, but he or she may not be knowledgeable about it either. The diagnosis of death can be difficult. It is sometimes inconclusive and may be erroneous. Families often seek a second opinion from England. The committee may wish to go deeper into this issue later. It relates to pathology and the lack of specialist pathologists here. There is often a long delay in receiving autopsy results, months or years, which means parents do not know why their child has died. The wait for results is indescribable. Many term it "hell on earth" and it is one of the most difficult aspects of the tragedy. The task force recommendations address all these issues.
There is a lack of structure for assessing affected families. When somebody dies from sudden cardiac death, all first degree family members should — because of the inherited factors in sudden cardiac death — be given the opportunity to undergo a comprehensive risk assessment. Initially this would have been carried out by the general practitioner. We now know general practitioners do not know much about the matter. It is now more usual that where necessary family members are referred to dedicated cardiology specialists for further assessment. However, there are problems in this regard. Practitioners do not know the families and there is no dedicated screening centre. There is nowhere to send families for cardiac screening.
Families are sent to cardiologists working in clinics where medical staff are already overstretched. Dr. Mahon could probably describe what he sees happening. What happens is we get bereaved families sitting at the end of a queue of 70 and 80 year olds. These families have a different need. They need a holistic approach. They need time and psychological and medical help and they need somewhere to go. We have all met the wonderful teams working in this area, but they do not have proper facilities. A screening centre would provide a solution.
There is also a lack of structure for protecting and assessing members of the public. It is essential we identify those at risk. While everybody is keen for screening centres to be put in place to deal with the families which are affected, we are screaming in our heads because it is too late. It is important to stop this from happening in the first place. There will be another two cases this week. As we have no register, we will not know where those cases take place or who those affected are. The best we can do is read the newspapers, as somebody has been doing, and try to contact the people in question.
If we cannot identify everybody who is at risk, we should make sure that defibrillators are in place. Nothing is preventing this country from providing defibrillators in the right locations so they can activated at the right times. Most young people are in school or university for many hours during the day. Defibrillators could be located in such places, as well as in clubs, pubs and hotels. Young people do not normally walk on beaches on their own. Defibrillators should be made available wherever young people are to be found in significant numbers.
The Sudden Cardiac Death in the Young Support Group comprises many parents, most of whom are not present at today's meeting. It was established earlier this year with the assistance of the Irish Heart Foundation. Those who founded the group felt there was a need for families to receive more support and information after sudden deaths take place. Ms Monica Martin started this process by picking up the telephone to contact Mr. Joe Duffy of RTE. Several of us contacted her thereafter. We met again when we went to a medical profession conference about sudden cardiac death to seek more information. On that occasion we encountered some more parents who were there for the same reason. We want to support families and effect change in order that others may live. We direct people to local informal support groups, as well as to appropriate and accredited counselling services. Dr. Delaney will help to train trauma bereavement counsellors specialising in sudden cardiac death. We need to direct people to the appropriate medical expertise. We have produced a small medical information pack. Our website is under construction. We have published booklets, leaflets and newsletters. Over 100 people attended an information and support day for affected families, which we arranged last month, even though we expected just 30 people to come.
I would like to mention some issues which the support group is particularly keen to emphasise. There is a need to increase public awareness of this problem. This syndrome should become a household word like meningitis. All of our children could be at risk. We need to ensure that family GPs are educated about sudden cardiac death. I have outlined a two-pronged approach to the awareness aspect of this debate. Timely and appropriate screening by medical experts is needed for the affected families. A screening centre should be developed. Those who are at risk should be identified — the possibility of developing a questionnaire to be sent to schools and sports clubs is being considered. I reiterate the need for defibrillators to be made available.
The Sudden Cardiac Death in the Young Support Group would like the members of the committee to ensure that the Government and the HSE demonstrate a sustained commitment to the implementation of the recommendations of the sudden cardiac death task force. The job of project co-ordinator in this regard is currently advertised on the website of the Irish Heart Foundation. A two-year contract is being offered, with secondment as a possibility. Public representatives need to encourage those around them to ensure that the necessary structures are put in place. We would like politicians to facilitate discussion and communication in all areas — in their own localities or in the Oireachtas — to drive this project forward. As they are in positions of power and influence, their assistance is vital. I thank the members of the committee.
Has Ms Vasseghi completed her presentation?
Ms Vasseghi
The documentation I have made available refers to some questions the support group is frequently asked, most of which are more relevant to non-medical people.
Okay. A number of members of the committee have indicated they would like to ask some questions.
I would like to be associated with the welcome that has been extended to the Sudden Cardiac Death in the Young Support Group. Politicians always smile when they are told they are in positions of power and influence. I am strongly supportive of exchanges of this nature. It is important that we should use the joint committee system in this way. I am very supportive of the case made by the support group. I am not in the same age group as those who are the subject of the group's concern. I survived a heart attack seven years ago, which was a scary experience. I often say I cannot remember things which happened yesterday, but I remember clearly every single thing that happened that night, including when people around me died. I do not mean to be patronising or virtuous when I suggest that such an experience can be a driving force in one's life. I have a broad interest in health matters. Ms Vasseghi made the point that many of my colleagues are medical practitioners, but I am not — I am just a lay person. I have had the experience I mentioned, which gives me a personal link with the support group's argument. I am sure my more learned colleagues will ask technical questions.
I would like to express my support for the group's activities. The political system should show its support. The difficulty that often emerges is that there can be competing interests. Some health problems are seen as headline problems. The problem under discussion today is a very real problem. One of the things that often strikes me about cardiac sudden death is that it comes out of the blue. I do not wish to be flippant by referring again to my own case. I had my heart attack at a Frances Black concert. The last thing I thought was that I was going to have a heart attack. I can only imagine what it is like for a family to deal with the sudden death of a young person who was leading a normal life and going about his or her business, for example by playing football or visiting a disco. That is what struck me as I listened to Ms Vasseghi's comments.
I do not intend to speak at length. I support the work of the Sudden Cardiac Death in the Young Support Group. Most of the work I have been doing in recent times has been to try to support the cardiac rehabilitation services which helped me to recover. I would not have been able to continue as a politician if it had not been for their assistance — I know some of my colleagues will not be happy about that. Their success in my case proves that one can go on in life. It is good that people who have encountered tragedy in their lives have found a way to do something positive. I wish them well in that regard.
I welcome the Sudden Cardiac Death in the Young Support Group to this meeting. I lost a good friend of mine, who was just 25 years of age, to sudden adult death syndrome. The worst part of it was when the post mortem came back, because it showed he had quite a healthy heart. I understand the heart is not only a pumping vessel, but also an electrical fuse box of some sort. My friend's fuse went for some reason for a fraction of second, which caused him to die. It was very upsetting for the family involved. I know a lady in Kilkenny who has lost two sons, both of whom died while playing soccer, to sudden adult death syndrome. It is obvious that such a case is terrifying.
I have been involved in Carlow with a group of firemen who are fighting to get defibrillators into the fire stations. The best thing about such an approach is that it would mean that defibrillators would be constantly accessible. One danger with the community based defibrillator service is that people can be absent at key times. If we locate defibrillators in fire stations, somebody will always have access to them. In such circumstances the fire service can be called to assist until the ambulance service arrives. This approach is also in the best interests of the health and safety of firemen because there is a danger they can go into cardiac arrest when they are called to a severe house fire or a road traffic accident. If there is a defibrillator on board each fire engine, it will help to keep firemen alive. I agree with Ms Vasseghi's point about the importance of locating defibrillators in all places where people congregate. That is particularly vital when one considers that certain parts of the country are quite far from hospitals.
I would like to ask about the screening process. I have constantly reminded this committee about the need to bring forward the report of the task force on sudden cardiac death, which contains many recommendations. How many of the recommendations are aspirational, in the opinion of the support group? To what extent has progress been made on the task force's recommendations? I would like to repeat a proposal I have made before. It is all very well to invite a group to address us on a certain issue, but we are failing miserably if we do not also invite the corresponding section of the HSE or the Department of Health and Children. Following today's meeting, we need to prioritise the need to invite representatives of the HSE and the Department of Health and Children to tell the committee what is being done specifically to implement the recommendations of the task force's report.
We will consider that after the meeting.
I welcome the Sudden Cardiac Death in the Young Support Group to this meeting and thank it for its presentation. I sympathise with the members of the delegation who have lost their sons. I understand that this phenomenon is more common among males. As Ms. Vasseghi said, when one loses somebody dear to one who was healthy, etc., the first question one asks is: why? The second is: was it preventable? That people wonder whether it could have been foreseen is one of the tragic aspects of such a death. I wish the support group well. Its job is to ask questions and relay relevant information to those who join it.
Ms Vasseghi referred to a screening process. I understand that perfectly healthy people who show no signs or symptoms are affected by the syndrome. In the case of meningitis, the symptoms are recognisable and it is a matter of treating them early. However, I am not aware of the symptoms of sudden death syndrome which medical practitioners could diagnose. Will the delegates outline the position on this? If a problem can be detected, it can obviously be treated or prevented. This is what must be done in addition to raising awareness.
That two healthy people die of sudden death syndrome per week is frightening. This amounts to 104 deaths per year, yet the problem receives little publicity. The first step we should take is to establish a national register and inform the public about the number of victims. If we do not quantify the number, the syndrome will never receive the attention it deserves.
The need for defibrillators was mentioned. A defibrillator should be an essential part of any first aid kit and we should strive to achieve this. It was asked whether there is one in the Oireachtas and I was not aware that there was one.
There is one.
I am just letting people know I was not aware of it. I should have been aware of it and trained in its use. Some of us knew about its existence and others did not. There is not much point in having defibrillators in shopping centres if people do not know they are there. Developments could be achieved in this regard very easily. Some years ago, the first aid kit at a football field comprised a bottle of water and a sponge. People are now moving on and expect more.
Often when the committee hears presentations, it is not told what it should do. I would like the delegation to suggest briefly how we could generate awareness and launch a campaign to deliver defibrillators. I welcome the fact that the delegates have pointed us in a particular direction.
I, too, welcome the delegation and offer my sympathy to those who have been tragically bereaved. I have a couple of general questions. I am particularly interested in the fact that families who have been bereaved have a higher incidence of problems. What is the percentage and what problems would be determined by screening? How could it be identified in advance whether a young boy or girl is likely to suffer from sudden cardiac arrest while exercising? Questionnaires were mentioned in this regard.
There is much publicity on making defibrillators available. What is the cost of a defibrillator and is it increasing or decreasing? In my constituency a couple of groups, particularly sports clubs, have defibrillators but the cost is obviously a factor for a voluntary organisation.
Where should defibrillators be located? Should they be in every sports club or on the premises of the local fire brigade, as Senator Browne suggested? We want to put them in place as efficiently as possible. There should be somebody available who is trained to use them. Is such training widely available and what is the input of the group in this regard?
I, too, welcome the group and thank it for its presentation, which I found very moving and heartbreaking. Ms Vasseghi is very brave and I realise she is just approaching the first anniversary of her son's death. One of the deceased has the same birthday as one of my children. I am looking forward to a 21st birthday but I realise that Ann Simpson is probably dreading the prospect. I take my hat off to her for attending and for being so brave.
Would it help if there were overall screening, particularly of the younger age group we feel are at risk? Has anybody costed this? We have had many groups before the committee requesting screening for various conditions. In this regard, would it help if the Sudden Cardiac Death in the Young Support Group were selective?
I was travelling on parliamentary business last week and noticed that two airports in the United States had defibrillators mounted on the wall. It was the first time I saw one and I was impressed. They are relatively inexpensive items, yet they can be so effective.
What kind of training is needed to operate a defibrillator? Is it only medical personnel who can be trained to use them? I believe not given that I saw them displayed so openly in airports. Are they as readily available in Ireland as in other countries? If not, why not?
What age group would one target for training? Is it worth talking to fifth year leaving certificate students or university students in this regard given that many of their peers are dying of the syndrome?
I welcome the delegates. The most interesting part of the presentation was the personal testimony. All the bereaved have spoken about how healthy their children were. Perhaps it is not fair to ask people who are not medically qualified whether it is fair to say they were healthy, but Dr. Mahon might have the answer. There was clearly something wrong. If somebody died of the syndrome, he or she was clearly predisposed to it and, therefore, was not healthy. I consider myself healthy, but one never knows — I might be the next victim. How can one tell?
I apologise on behalf of Deputy Twomey, who cannot be present.
I express my sympathy to the delegates and commend them on their work. Public representatives, including myself, occasionally come across families who have been bereaved as a result of this terrible syndrome. The most striking aspect is the isolation and the anxiety that siblings might also be affected. It is very important that there is a support group, which makes all the difference to people going through this torment.
Has the group any comments on how we can raise public awareness? Should the health promotion unit be dealing with the matter by circulating general information or should it be informing teachers and community leaders and, if necessary, training them?
I represent a rural constituency and it is very noticeable that there has been a very strong response in small rural communities. The network is growing where defibrillators have been introduced and local communities are learning how to use the resource. I am not clear whether defibrillators are provided extensively. Has the delegation an idea if the coverage is restricted or growing? A much larger programme of investment in this could be introduced particularly when the costs are so low.
Ms Vasseghi
I will answer some of the questions and allow the two experts answer the others. I suggest all defibrillator questions be answered by Mr. Giffney. Some of the earlier questions relating to screening are part of the task force's recommendations. It advised to keep a register and to appoint a project manager to implement the recommendations. Most of the questions asked are contained in the recommendations and will be implemented. The first recommendation to be implemented concerns GPs' education in sudden cardiac death. The genetic screening I will leave to Dr. Mahon because he knows much more about it.
Regarding Deputy Fiona O'Malley's question, we have discovered that in many cases there would have been symptoms such as dizziness or fainting which we missed because we did not know they were important. My son had a problem with tiredness and breathlessness and it was put down to other symptoms. From talking to each other, we would have overlooked these simple signs and symptoms.
How long would they have been present beforehand?
Ms Vasseghi
With my child, he had been given ventolin and was misdiagnosed. Other children would have had dizziness a few months before.
Is that common in all cases?
Ms Vasseghi
One will also have children living with a problem. Someone who has a problem that is increasing gradually will not recognise it is important. How many teenagers worry about their heart beat?
GPs and the medical profession are now more aware of sudden cardiac death.
Ms Vasseghi
They hear people talking about it but they are not trained on it yet.
Does Ms Vasseghi believe GPs are not up to speed on it?
Ms Vasseghi
Very much so. I have an excellent GP who was in class with Dr. Keelan, a specialist in the Mater Hospital. She increased her knowledge on this. It is a detailed subject and it must be taken in a structured way to educate them.
In many cases are there are already signs and symptoms?
Ms Vasseghi
Yes
I was not aware that there were. Many of us are aware of the Cormac McAnallen case which happened suddenly. I never heard in any media reports that there were any signs and symptoms prior to that.
The symptoms and signs are non-specific and could be attributable to many other conditions apart from cardiac death.
Ms Vasseghi
Exactly.
Dr. Mahon
Many of the questions relate to screening. It is a slightly artificial definition but we distinguish between sudden cardiac death and people over 35 years. Over the age of 35 years, the prevalence is about one in 1,000, the majority caused by coronary artery disease. Many of those would be people in their 60s and 70s. As it stated in the task force report some of those sudden deaths are a nice and natural end to a full and healthy life and others a welcome relief from a terminal illness. Not all sudden cardiac death is inappropriate.
In the under 35 years age group, these are events that occur out of the blue in people who are apparently healthy. It is a devastating event for their families and friends. Some 60% of them are caused by genetically inherited conditions. These are usually autosomal dominant conditions which have a one in two chance of being passed on. That is why family screening is important. As to the question were these people truly healthy, it depends on the definition of healthy. Their hearts are functioning perfectly, leading no symptoms and people are leading a normal healthy life. People can be professional footballers and not know they have this predisposition. Sudden cardiac death is caused by a rhythm disturbance, an arrhythmia. As Senator Browne said, a heart is like a fusebox and sometimes for no apparent reasons the electric go awry and the heart stops. To all intents and purposes, these people are healthy until this happens.
The symptoms and signs are difficult to identify as most of them are non-specific. I do much work in dilated cardiomyopathy. One theory was that it was a heart muscle disease where the muscle is enlarged and contracts poorly. It tends to present when it is very advanced. One theory for many years was that it was caused by a virus that affected the heart. Diagnoses were made and the patient would agree that he or she had a cold several weeks before never shook it off. It turns out that most dilated cardiomyopathy is familial or genetically determined and not related to any virus. In retrospect, relatives beat themselves on this. Most people have similar symptoms but they are non-specific.
The task force's report is sobering and realistic. The symptoms it advises to watch for are sinister such as someone blacking out after exercise or sustained uncomfortable rapid palpitations. Many of those who die suddenly do not have these symptoms. That is why we emphasise the prevalence of genetic conditions in people who die suddenly under the age of 35 years is high at 60%. If one is going to screen, one is going to have a higher chance of doing something useful where the underlying probability of the disease is high. The overall incidence of sudden cardiac death among the under 35 year age group is one in a 100,000. It is like looking for a needle in a haystack.
One can refer to Bayes' theorem. For example, Italy screens its athletes for years in a unique programme. In Rome Dr. Antonio Pelliccia carried out ECG tests on 1,020 elite professional athletes. Of those 144 had extremely abnormal ECGs which would lead to a diagnosis hypertrophic cardiomyopathy. It turned out only one had that condition and there was nothing wrong with the other 143. This ECG could have potentially ruined their lives. They might have been labelled as having particular conditions that excluded them from insurance or forced them to stop playing sport. The problem is that one is screening a group in which the underlying probability is extremely low.
In addition, the test does not work very well, whereas it does if one takes family members of somebody who has died from hypertrophic cardiomyopathy, or has that condition, a genetic condition where the chances of a first degree relative having it is one in two, or at least of having the gene. One can have the gene but not have the disease, but the prevalence is much higher, and if one finds two relatives with bizarrely abnormal ECGs, both will have hypertrophic cardiomyopathy. Therefore, the test will work much better because the underlying probability of having the disease is very high. That is why the task force — why we as physicians — strongly recommends screening first degree relatives of people who have died suddenly, particularly if they have been shown to die from an inherited cardiac disease.
That is a long-winded answer but it is difficult to predict upfront for the general population who is likely to die suddenly. There is no one single symptom which will indicate someone who should be screened. It is much easier to screen first degree relatives of people who have inherited conditions, or who have died from such conditions. That is not only desirable now but probably mandatory following international guidelines, such as the UK national service framework, which is what is recommended by the task force.
Dr. Mahon has explained that very well. With regard to vague symptoms of feeling unwell after exercise, increased heart rate and so on, does that happen over a period of time or could it happen to a guy of 19 or 20, for example, out training regularly, and suddenly feeling not as fit as he was after exercise? If so, perhaps we should be aiming more at coaches and those looking after such people, in order that they would be very alert if, for example, a person said he or she ran half a mile yesterday or a week ago and then ran the same distance and felt unwell. That might help identify a group which is very difficult to identify in the general population.
Dr. Mahon
That is a good idea, but it depends on the condition. We talk a lot about hypertrophic cardiomyopathy, where the heart muscle looks bad from the age of 19 onwards, most of the time, and does not greatly change after that. Arrhythmia is a sort of random event whereas a condition such as dilated cardiomyopathy is a progressive heart muscle disease where the muscle progressively enlarges. That would be an instance where a person might be perfectly well in the first six months or year of training and might then gradually deteriorate.
Ms Vasseghi
Regarding screening, Dr. Mahon noted it was difficult to identify people at risk. The task force suggests that one might initially use what I would call screening on paper, that is, a questionnaire. That would pick up and attract more people. They are doing that in other countries. Various questionnaires and templates are available, and a group of people is going to organise one. That should filter out some people who think they do not have a problem. They might tick a particular box, and then be referred on for a physical test. That is achievable in Ireland and not expensive. Nor will it create unnecessary worry and concern for people or stop them from playing sport. They will be picked up initially and then moved on, sorted and re-sorted until it is clear who needs treatment or who is more likely to be affected.
In other countries they are slightly ahead of the paper screening. In England there are some mobile screening units which athletes can attend. Their ECGs and echo-medical examinations are carried out by specialists. As screening is done by specialists, it is not just a matter of walking into one's local ECG department or echo department and having it done. They know what they are looking for. England is the first country to establish this programme. Next week I am going to Rome to look at the figures more closely and what is happening there.
In the United States, because there was no screening or structure — there are 50 states with 50 different attitudes — parents have grouped together and are doing what they say is saving lives at weekends. They have set up areas where they will have a cardiologist, specialists and technicians on a voluntary basis, trying to pick up what they can pick out. As Dr. Mahon said, one cannot pick out everything, but they can pick out what can be prevented, which in my son's case would have been possible. For some other mothers too, their children would be here today if they had been screened.
I wanted to ask about defibrillators.
There are two people I want to bring in at this point, Senator Henry and Deputy Timmins.
I sympathise with Ms Vasseghi on what must have been a shocking experience and I thank with Dr. Mahon for a clear explanation of what is happening. I am concerned about the reliance on defibrillators solving everything, because in the majority of the case histories presented before the committee, the children died at home, some in their beds. One cannot expect every house to have a defibrillator, and it takes quite a while to put it into use. In fact, it might be more useful for the one out of 1,000 of the over-35 age group who develop a cardiac arrhythmia than in the other cases. I approve of Dr. McMahon saying that not all these deaths are inappropriate. Many of us might be keen to go that way.
As has been noted, mass screening would not be of much use, but I am concerned about the screening of the first degree relatives. I am not saying this should not be done, but we must consider it from an insurance point of view as well, because people who have genetic conditions now incur a lot of insurance trouble. It would be important for the task force to address that.
We are talking of a dominant gene, and as Dr. Mahon said, if it is in one's family one has a one in two chance of inheriting it, but I think there is only about a 30% expression rate for the gene. The last case I knew of in a family involved a man of 76 who had played sport all his life. Now, however, his four children, in their 40s, have to go through a considerable amount of screening and they are anxious about their children. Therefore, it is a big issue in terms of genetic counselling. One may be asking teenagers to be screened, and that is a heavy stress. Dr. Mahon might tell us how much exactly can be done for people. If one is to tell an 18-year-old that there is nothing that one can do, but that there is a chance that person could drop dead, I would be anxious about that.
I would like to know what the task force thinks could be done about the insurance issue because we have had to take very strong action on insurance in other areas.
As it is almost time for the Order of Business, which we must attend, I will take a final question from Deputy Timmins.
I am sorry I missed the presentation but I have the documentation before me. I sympathise with people who have suffered sudden deaths in their families.
I have a strong interest in this area. I am involved in Wicklow with a cardiac self-help group and first responder schemes, with 21 operational and a further two trained. A difficulty is that we find it very difficult to get support from a vast majority of GPs. I know some doctors are very committed to this issue, but many do not have a defibrillator as part of their equipment. I find that quite strange and would like to know if the delegation has a view.
The delegation spoke of getting its proposed scheme for defibrillators rolled out, and seeing that the Health and Safety Authority have them in the workplace. I have made submissions to the Department of the Environment, Heritage and Local Government to have them included in planning guidelines. If an area has a potential to attract so many people, the provision of a defibrillator should be there as part of a planning condition, as it is in the United States. Has the group made submissions in this regard to the Health and Safety Authority or to the Department of the Environment, Heritage and Local Government? Does it find it comes up a brick wall, a lack or knowledge or a fear of the concept?
With respect to the Brian Moore task force report, a number of recommendations were supposed to be implemented by the end of 2006. The report came out in early March. What is the group's views? Senator Henry said it is not practical to have a defibrillator in every house — I agree — but one will find small groups of houses in estates in rural areas seeking a defibrillator because of a history of heart disease. They cost from €1,600 up to approximately €3,000 and are not expensive in the scheme of things. I attended a presentation in University College Dublin, at which some of the delegates may have been present, where a consultant from Boston spoke about a small battery-powered version of the device. Some people are opting to be fitted with such automatic defibrillators.
Our scheme in Wicklow has been tremendously successful because the local ambulance service is involved. I am aware, however, that this policy has not been rolled out nationally and that in other areas, such as Cork, Wexford and Kerry, it is difficult to get such schemes up and running because the ambulance authorities are not obliged to work in conjunction with them. What is the delegation's view on this? Of the 23 groups in Wicklow, two are not operational because, in those instances, the 999 call goes to the control centre in Townsend Street in Dublin where, because of an industrial relations issue, the staff have not signed up to co-operate with the scheme.
Regarding insurance, I understand there is no case in Ireland where a person has successfully sued another who provided assistance in good faith but may have caused an injury to the former. It is certainly true that no such case has been successful. Under the first responder scheme, the insurance costs of voluntary groups are covered by the Department of Health and Children. However, a club or parish community, for example, wishing to set up such a scheme may find that, although insurance may not be a difficulty in practice, it may in theory prohibit the development of the scheme.
My comments on insurance related mainly to life assurance. It is important to remember that it requires a person who can perform cardiopulmonary resuscitation, CPR, to use a defibrillator successfully. It is not as simple as it may appear in films. Perhaps we should concentrate on getting more people trained in CPR.
Mr. Niall Giffney
While prevention and screening are the gold standard in terms of preventing death by cardiac arrest, they are often ineffective. When a person goes into sudden cardiac arrest, the use of an automatic external defibrillator, AED, is essential. AEDs can be used on children as young as one year old and so cover the broad spectrum of all cardiac arrests. For those who have never seen one, an AED is approximately 8 inches by 6 inches and is mobile. One of the questions most frequently put to me is whether an AED could possibly harm the patient. It is important to reassure people there is no known case of these machines administering a shock to somebody who did not need to be shocked. They are absolutely safe to use on a patient in cardiac arrest. They can, however, harm the operator because they send an electrical shock into the patient. An operator or bystander who happens to be touching the patient as the shock is administered may be harmed. This is the only disadvantage of using an AED but the training takes this risk into consideration.
The most important aspect of dealing with a person in sudden cardiac arrest is the initial and prompt administration of effective CPR. That cannot be underestimated and is absolutely essential. However, CPR on its own will not take a patient out of sudden cardiac arrest. The shock provided by an AED is essential to interrupt the electrical system going on in the heart. All basic life support courses now include training on the use of an AED.
Both the Irish Heart Foundation and the American Heart Association endorse an internationally recognised three to four-hour training programme. This programme uses the most up-to-date educational principles, including educational support materials such as DVDs, to ensure participants retain the information they receive. Programme participants are judged to be absolutely competent in the use of the machine after this three or four hours of instruction.
The machines cost from €1,200 to €2,800, plus VAT of 21%.
Why is there such a variance in price? Is it because there are different types of machines?
Mr. Tom Giffney
Yes, some models include exceptional features. They all primarily deliver the shock that is required but they have different ways of doing it, different battery lives and so on. One of the main issues to consider when purchasing a defibrillator is to ensure it has a long battery life. The only predicament worse than not having a defibrillator is having one that does not work when required. Careful consideration should be given to choosing a machine and, as in all aspects of life, one must expect to pay for quality. Another issue to consider is whether the machine is compatible with the facilities provided by the local ambulance service and hospital facilities. Some of the features on some machines may not be required in a particular case, depending on where it is to be deployed. In a hospital setting, for example, AEDs in use in the accident and emergency department and other high-risk areas may have a slightly higher specification.
Recent research necessitated a change in the guidelines on the use of AEDs. If one can treat a patient suffering sudden cardiac arrest quickly enough with an AED, it has been proven that 90% of the time there is success with the first shock.
What is meant by "quickly enough"?
Mr. Giffney
It can take time to get to the patient. In Leinster House, for example, an AED would be most likely located in the main foyer and it would take several minutes to apply it to a person who had suffered cardiac arrest in this committee room. The first thing one must do in such situations is notify the ambulance service. After this the AED would be activated and brought to the required location. The objective is that the AED should be used within three to four minutes of the patient suffering cardiac arrest. However, I have successfully used the machine on a patient who had received effective CPR for 27 minutes. That patient survived but it is an exceptional example. In general, if a patient is treated with an AED within three to four minutes, there is a more than 90% chance of success.
Approximately three years ago I had discussions with a forward-thinking building firm which purchased AEDs for its various building sites. Within eight weeks of purchasing the machines and training the staff, including the occupational physician, occupational health nurse and several on-site safety representatives, a 51 year old man collapsed while going to lunch. He was converted on the first shock using the AED, admitted to hospital and walked out ten days later. That man would not have lived had it not been for the AED machine. They are essential, involve a minimal amount of training and anybody can be taught to use them.
That is why I said they are used far more often on people more than 35 years of age.
Mr. Giffney
That is most often the experience but they can be used in all the circumstances of which we have spoken.
Yes, but it is far more likely they would be required by older people.
Mr. Giffney
Members may be aware that the Garda Síochána has recently implemented a pilot AED scheme in two areas — Blanchardstown-Cabra-Finglas and Kilkenny. I was recently involved in training gardaí for these schemes and they have already seen the merits of using the machines. The machines are carried in the back of patrol cars and there is a link-up to the ambulance service. When the latter gets a call to a high-risk situation, the gardaí in the area are also alerted and whoever reaches the scene first will administer any AED treatment that is required.
The experience has been that these machines are used mainly on people over the age of 35. Is this because one does not expect people younger than that to suffer heart failure? Ten years ago I had never heard of sudden cardiac death in young persons. It is something of which I have only heard in the past three or four years. Was it always present or is it something new?
Dr. Mahon
It was always there.
Has there been an increase recently?
Dr. Mahon
There is increased awareness. There are no Irish statistics on sudden death. All the numbers we have given to the joint committee are based on extrapolations from international statistics, as at present there is no recording facility on the death certificate for sudden cardiac death.
At present such deaths are not recorded.
Dr. Mahon
There are some small studies which suggest that the instances of sudden death among young people might be increasing slightly. While I do not want to get into the reasons for that, it has been present all the time. These devices will be used more on older people because older people experience cardiac arrests 1,000 times more frequently than do younger people. The point being made by the witnesses and by the task force is that we cannot predict the vast majority of these events in advance. The task force has come up with a recommendation as to the questions which should be asked on questionnaires, of which sinister symptoms and family history are important components. This would select many cases. Moreover, although we can target individuals at risk by screening relatives of those with genetic conditions, we cannot predict the majority of them.
Hence, we emphasise the defibrillator programme. The survival rate of out-of-hospital arrests without a defibrillator programme is abysmal. We examined the issue in the Mater Hospital and found that for people who arrested at home or outside of hospital and who were brought in, the survival to discharge rate was 3% in cases where there was no defibrillator outside. However, a small number of individuals arrested in sites with defibrillators, predominantly in Croke Park, as well as one or two in Dublin Airport. They were defibrillated on-site and their survival to discharge rate was 50%. Hence, while the programme will not save everyone, it will dramatically improve the rate.
For years, even before the advent of automatic external defibrillators, AEDs, Seattle, Washington has been emphasising training of the population in CPR techniques. Its target was to have 20% or more of the population who would be able to perform CPR in the setting of a cardiac arrest. It regularly publishes its statistics on survivals of out of hospital arrests, including the use of AEDs, and its overall survival rate is 30%. This constitutes a dramatic improvement on a rate of 3%, if one does nothing.
Many people in their 50s have heart attacks, and 50% of heart attack victims do not make it to hospital. This is simply because they experience an unlucky random rhythm disturbance which causes their heart to stop, even though only a small amount of muscle might be damaged. If such people did not die, they could live a perfectly normal life. They are simply unlucky in that they experience an arrhythmia and do not make it to hospital.
Senator Henry is correct to suggest that one cannot have defibrillators in every house in the country. However, with first responder programmes involving the emergency services, the Garda and local communities, one could have a network whereby every house would be within five to ten minutes of an AED. One can get good results if one can perform effective CPR for up to ten minutes. Hence, a network of defibrillators is feasible and is not terribly expensive. Much of this is driven by charity groups and interested groups, most of which have the money to buy them.
A national network would need some kind of co-ordinating system in order that dispatches would know the exact location of the nearest defibrillator. Such a system would also assist in terms of validation of the machine, ensuring proper training in their use and in periodic recertification. However, it is certainly feasible and Ms Vasseghi's presentation made the point that Ireland is a country in which people are generally interested in such matters. They latch on to them and take them forward. Ireland is relatively small and could be a heart-safe country. This could be as significant as the smoking ban. Ireland could be the first heart-safe country in Europe, in which a major section of the population was trained in the use of these machines, in which the coverage was almost nationwide and in which everyone could be within five or ten minutes of a device.
Could AEDs be exempted from VAT?
Dr. Mahon
Yes.
That would make sense. Perhaps the joint committee should make this point. Following the presentation by the HSE and the Department of Health and Children, the committee could write to the Minister for Finance asking for that to be done.
I want to ask Dr. Mahon a question regarding pacemakers. While people stated there were warning signs which were not picked up in the past, would pacemakers help solve the problem if people realised there was a difficulty? Would pacemakers reduce mortality rates if people got them in time?
As a final point, while the task force report on sudden cardiac death was only published in March, the issue has been discussed for many years. It aimed to have 48 of its recommendations implemented by the end of 2006. Thus far, how many of those recommendations have been implemented? Essentially, one third of the year has passed. May I assume that 16 recommendations have been implemented? Do the witnesses know?
Ms Vasseghi
Nothing has been done, because someone is about to be appointed to the post. A job offer has been made and someone will be in position in July. Thereafter, that person will begin to work through them.
Hence, none of the 48 recommendations has been implemented. Can they be achieved?
Ms Vasseghi
All of the recommendations are achievable.
Can they be achieved within the timeframe?
Ms Vasseghi
I am unsure. However, it will be great if a start is made, because that will mean that the report is not gathering dust. It will be all right if the implementation is slightly delayed, so long as it is done properly.
I have a question for Dr. Mahon. Who actually gives CPR training? Must those who wish to be trained go to the providers, or do they visit organisations? For example, would they come to a large organisation such as the Houses of the Oireachtas? Many people would sign up to such training, particularly as there is an AED in the Houses. Do such organisations deliver on-site training, rather than obliging people to attend external course?
Dr. Mahon
Perhaps Mr. Giffney will answer that question. May I answer Senator Browne's question regarding pacemakers? It relates to an earlier question from Senator Henry about individuals with cardiomyopathies. It is possible to identify a group of individuals who are at high risk of sudden cardiac death. Most studies would consider a risk of more than 4% per year to warrant special intervention. It was noted previously that special intervention consists of an implantable defibrillator. For example, this is the device with which US Vice President Dick Cheney has been fitted. It is an electric shock box which can automatically detect a lethal arrhythmia and can deliver an internal shock. As internal defibrillation requires a much lower level of energy than does external defibrillation, it delivers approximately 30 joules, whereas external defibrillators deliver approximately 150 or 200 biphasic joules.
It also functions as a pacemaker, in case the heart slows down. Although most deaths occur due to abnormally rapid heart beats rather than abnormally low heartbeats, a defibrillator is a specialised form of pacemaker. This is why it is worth trying to identify individuals who are at a particularly high risk, particularly those with inherited cardiomyopathies.
Nevertheless, I agree with Senator Henry that this is a double-edged sword, which also has negative implications for individuals. If one asks people whether they would rather not know anything and would wish to live with the chance of dying suddenly, few people would reply that they would not want to know about it. Most experts who bring out such recommendations agree that on balance, screening of high risk individuals does more good than harm. This is particularly true in the era of defibrillators, which are relatively small, very reliable and very effective devices.
Mr. Giffney
In terms of training, if one considers the certified programmes run by the Irish Heart Foundation and the American Heart Association, the former has an excellent network in place which includes approved training sites. Each approved training site has registered and qualified training instructors for all areas. Such instructors must undergo assessments on a regular basis and must also carry public liability and professional indemnity. They must perform a certain amount of courses every year and must prove to the Irish Heart Foundation that they do everything within its guidelines. These are all available on the training site.
For example, the Mater Hospital is a training site and conducts such training within the hospital. However, other training sites go into workplaces everyday of the week. For instance, I have a training site which conducts on-site training for the ESB, the Garda and similar locations. Hence, it is a simple matter of contacting the Irish Heart Foundation, which will provide a list. It also has a website which provides details of contact names. Other organisations, including the Red Cross, the Order of Malta and other first aid organisations, have approved and recognised sites.
One of the most vital things to do in terms of distribution of the AEDs is to ensure that the training that goes with them is of the highest possible standard. I conduct training in both Ireland and the United States and have participated in an American Heart Association network. We use their guidelines here. I assure the Senator that the training standards in Ireland are far higher than in America. We have nothing about which to be concerned in that regard.
I am aware that some of the staff of the Houses of the Oireachtas underwent such training and I compliment them for taking the time to do so.
I suggest that members of this committee consider undergoing such training that would be administered in the Houses by an outside body. I am sure many other Members of the Oireachtas and staff would be interested in such training.
I acknowledge the suggestions made by Senators Feeney and Browne. Obviously, every party cannot be brought back before the committee after submissions have been made but this is an important one. We will invite officials from the Department of Health and Children to appear before us as a follow-up measure and will take account of a proposal. For the first time, we have heard from people who have been involved in frontline activity and we do not want to ignore that. Like other members, I sympathise with our guests. To follow up, we will discuss the matter with officials from the Department and then examine what we can do to protect ourselves and show good example.
Ms Jane Williams
I suggest that people in colleges and schools also undergo training. If such training took place, an entire generation could be covered very quickly. Training could be included in transition year because students have the time available. Students could obtain a certificate and would then be aware of what could happen.
Families are not the only ones affected by sudden cardiac death in young people. The peers of our sons are completely shocked and know that such deaths can happen again. A question was raised about general awareness. So much can be done. Do we know as much about sudden cardiac death in the young as we do about meningitis? If a personal story or campaign was used, people would quickly realise that it could happen to them. We should move forward in this direction and I would be delighted if the Houses of the Oireachtas set an example in this regard.
Ms Vasseghi
CPR training is mandatory in schools in some US states. It is mandatory in Texas and I understand it will become mandatory in Washington. My daughter found her twin brother collapsed on the floor. I had intended undergoing CPR training with them as a precaution. We had previously lived in France where first aid is taught in schools. However, my children missed out on CPR training when we moved to Ireland. My daughter had not undergone such training by the time she found her brother in a collapsed state. This past year, she would have found it too painful to undergo such training. She attended a party with 200 other young people last week at which the person to whom she was talking collapsed in front of her into her arms. The person had suffered an epileptic fit rather than cardiac arrest. However, my daughter urgently wished to learn CPR. The other people at the party, who were all students, queried their lack of knowledge of CPR and where they could obtain training in it.
People wish to learn CPR. It is a very basic life skill that enables a person to save the life of someone beside him or her. This could include his or her grandfather at home, which is probably the most common incidence of sudden cardiac arrest, or a colleague at a sports ground. There is no reason why CPR training should not be taught to our children.
Mr. Giffney
In the past five years I have been involved in training approximately 4,500 people whose enthusiasm has been tremendous. Outside of the health care setting, many businesses will supply such training to provide protection for their employees. The latter find it very gratifying to know that many of these incidents happen at home and that if they do occur there, they will be equipped with the skills to deal with them until such time as a defibrillator arrives.
Senator Henry asked at what age should CPR training be provided and my response is the younger the better. I once had reservations but was asked seven or eight years ago to adjudicate a particular competition in the country where children as young as eight or nine years were demonstrating CPR skills. I thought their performance was mind-blowing. If people learn these skills at a young age, they will carry them with them through life. There is no point in trying to catch people later in life. People must develop these skills at a young age. The US experience, which involves teaching CPR to very young children in school, is proof of this. Often, children will not be taught full CPR but they are taught to recognise an emergency, how to cope with it and how to telephone the ambulance service in their early years. The full system is gradually implemented as children grow up.
There is no reason that a child as young as 14 cannot be trained to use CPR. Transition year students would have no difficulty learning CPR. The most difficult part of using an automated external defibrillator, AED, is carrying out basic life support. An AED is simple to use because it tells users what to do. It is the CPR element that is the most difficult part of using an AED. There is no reason children as young as 14 cannot be taught these lifelong skills. There is no doubt that one day they will come across an emergency because the incidence of sudden cardiac arrest is so high and it would comfort them to know they did everything they could under the circumstances to save the person's life. It is very gratifying for relations of the victim to know that everything possible was done at that particular time and that their loved one received a fighting chance.
I agree with previous speakers. My experience has been that communities are crying out for CPR training. Once they receive the template and people know where to go for training and how to set up training programmes, it will take off like wildfire. When the national co-ordinator is appointed and the first responders scheme rolled out, this training will take off.
What are the stumbling blocks? I am sure members of the delegation have become frustrated and asked why nobody was listening to them and nothing was happening. What is the main stumbling block in the group's attempts to roll out training?
Awareness is the main stumbling block. My son was 16 years of age, played rugby and was very fit. I would never have thought that he would have collapsed and died. Even when they are told to watch out for warning signs, people do not believe it could happen to their sons. My son complained of dizziness but my doctor informed me that if I had taken my son to see him, he would never have examined his heart. As a mother, I believe we should know the possible symptoms.
I become angry when people claim that sudden cardiac death in young people is rare. We all lost our sons and I know three other people who lost sons aged under 25 years in May and June of last year. Seven people died in eight weeks. Three deaths took place in the same week as my son's death. Ms Vasseghi's son died two days before mine and another woman's son died later that week. Sudden cardiac death in young people is not as rare as people believe. My doctor told me that he only came across one case of sudden cardiac death in a young person, which occurred a few years ago. When I suggested screening, he told me my sister had no need to worry about her children. There is a considerable amount of ignorance on the part of GPs in respect of the genetic implications of sudden cardiac death in young people.
My son's death was misdiagnosed as having resulted from myocarditis. As I sought a second opinion, his heart was retained by St. James's Hospital and sent to Dr. Mary Sheppard, an expert on the subject in London. She concluded that the cause of my son's death was channellopathies, the genetic factor which caused the death of Cormac McAnallen and for which my family was then screened. This has significant implications for the rest of my family. An expert cardiopathologist must be appointed. The cardiologist in St. James's Hospital is very good but had only seen one other case of this condition, while Dr. Sheppard is an expert in the area. There are many more misdiagnoses and many families are told that their loved one's deaths are undetermined or resulted from natural causes. This is a terrible burden for a family. I hope the medical profession improves its knowledge of such matters.
Ms Vasseghi described the experience of receiving the autopsy results being akin to hell on earth. The release of such results can be delayed for months, if not years. Is this due to the nature of the death or the backlog in the Coroner's Court?
Ms Vasseghi
Sometimes, as happened in Ms Martin's case, the pathologist does not know the cause of death and the heart is sent away for testing. There is also a considerable backlog created by administrative paperwork. However, the delay often results from the lack of, and difficulty in obtaining, a diagnosis. This again raises the issue of the lack of an expert pathologist in this country. There are no stumbling blocks if the protocols and communication pathways are in place.
What is one trying to do? One will educate people, including general practitioners and the public. People will be trained to deal with emergencies. The stumbling block is technology and for this reason there must be medical research to obtain diagnostic equipment that can detect people at risk. However, we have not yet reached that point. When one wants to buy a house, one does not hand over all of the money. Instead, one chips away at the debt and buys the house gradually. It is the same problem in this regard. We are discovering something new every day. As such, there should not be any stumbling blocks. It is a very balanced approach.
Are members satisfied? We cannot give our guests an immediate date for a reply from the Department because this has been a short week in terms of sitting days. To follow up in a positive manner, we will invite representatives of the Department to appear before the committee and inform it of what our guests stated. The issue is one of making people more aware and should begin with the Houses. We will commence that process as quickly as possible.
Ms Vasseghi
I thank the Chairman.
I thank our guests for the presentation. We will now deal with business of the committee, as we have other issues to address.
The joint committee suspended at 11 a.m., resumed in private session at 11.10 a.m. and adjourned at 11.20 a.m. until 9.30 a.m. on Thursday, 22 June 2006.