I thank the committee for the invitation to attend this meeting and for giving us the opportunity to speak to members. My presentation will be brief and additional information packs will be provided to members.
Dr. Joseph Galvin, consultant cardiologist in the Mater hospital, has accompanied us. Ms Maureen Kelly, Ms Ann Simpson, Ms Monica Martin and myself have all lost children to sudden cardiac death within the past few years. Mr. Ryan O'Flaherty is a schoolboy who took part in the young social innovators scheme and did a school project on the subject, a summary of which is included for members.
I ask members to look around and make a guess as to whose heart is working properly and whose is not. Can one really tell from outside? On their way home later today I ask members to look at the young people around them and try to guess whether their hearts are all right. The second question for members to ask is whether they would know what to do if the person beside them had a heart attack or a sudden cardiac arrest and perhaps, more important, would the person beside them know how to save a life because in a few moments I will explain how important that is. These are the two main reasons we are here today.
I will give a brief explanation of sudden cardiac death. The heart stops without any warning - this is also known as sudden cardiac arrest. Most cases are related to undetected heart problems. It is important to note these can be inherited or acquired. It happens in all age groups, both adults and children, and it can happen anywhere, any time. It is not always associated with sport and physical effort. Athletes and non-athletes are at risk. It can occur in active and apparently healthy people and it can happen to people who have had no symptoms of heart disease. Most of the conditions which cause sudden cardiac death can be treated. This is the reason I asked if members would know what to do for the person beside them because death occurs within three minutes of the heart stopping. Time is critical and intervention must be immediate. This means immediate CPR and use of a defibrillator - AED - as soon as possible. The only thing that will restore heart rhythm is the AED, the automated external defibrillator. The CPR will help sustain life until such time as the defibrillator is used. If one just rings 999 and waits for the ambulance to arrive, it will be too late because the person will be dead.
Approximately 5,000 people die every year in Ireland when their heart stops. This is 18 people a day and one to two people per week will be under the age of 35. A total of 70% of these deaths and these cardiac arrests occur outside hospital. If one's heart stops today, one has a 1% chance of survival.
Two years ago we came before the committee with hopes that once our message was listened to at Government level, progress would be made, but little has changed. We find that situation unacceptable because these deaths are traumatic, unexpected and cause immeasurable and considerably underestimated devastation to families, communities and society. The horrific reality and tragedy is that most conditions which cause sudden cardiac death are treatable and, therefore, all of this is preventable.
We are sad, disappointed and frustrated. Those who are working tirelessly in the public service are, I am told, exasperated and demoralised, because when sudden cardiac death occurs today, there is still no pathway to information on support. It is vital to have this because relatives of the victims could also be at risk if the condition is inherited. The families leave the hospital with no information about what has happened, why it occurred and what to do next. They do not know where to go. General practitioners are not always knowledgeable about sudden cardiac death. Then, the diagnosis of the cause of death following autopsy can be difficult to ascertain and sometimes it is inconclusive or erroneous and second opinions are often sought from England. There is no specialised cardiac pathologist in Ireland and one is desperately needed.
There is often a long delay in receiving autopsy results, which is often described by families as "hell on earth". I can confirm this from my own experience. Some of the autopsy results could be presented to families much earlier. We need to put a proper process in place for toxicology. Reports should be quickly available so that they can be put with the autopsy data and the results should be fed through, even on a preliminary basis, to the GPs and the families concerned. Waiting for months to find out what happened to one's child when he or she appeared to be all right on the morning of his or her death is just not acceptable.
There has been a national approach to this and Ireland is the only country in the world which has taken a top-down approach to tackling the issue. The Government commissioned a task force and in 2006 it made 78 recommendations in a report called Reducing the Risk: A Strategic Approach. However, the implementation of these recommendations is not progressing because there is not much joined up thinking; much hinges on a mere €800,000 for the filling of 11 approved HSE posts. These were budgeted for and approved, the posts were about to be advertised and people knew these jobs were going to be filled.
There is also the cardiac first responder programme, which is to be rolled out nationally, involving CPR and defibrillators to ensure a proper co-ordinated approach. It is not happening, although everything is in place for this to go ahead. The booklet, The Cardiac First Responder, cannot be distributed because we do not have the money. Committee members have in their pack the first progress report of where all the recommendations are at, and they are slow. It is not for me to decide whom the committee should ask to come before it, but there are certain barriers which could be broken down and it might be worth speaking to some of the people who are closely involved in that regard.
Only two centres of excellence in the country are screening families affected by sudden cardiac death. Both of these are in Dublin and are being funded privately. Dr. Joseph Galvin works in Heart House and it is largely due to him that this programme started. It opened in 2007 and screens affected families. The centre for cardiac risk in younger persons is based at Tallaght and also opened in 2007. Both of these institutions have submitted reports which can also be found in the members' pack. However, there is no HSE funding for this area. I know HSE funding has to go elsewhere, but it is worth pointing out that this entire initiative is being funded privately. We need other centres of excellence outside Dublin and, when possible, HSE assistance at all centres.
The task force did not recommend population screening. In the case of screening for breast cancer and prostate cancer, for example, one knows exactly what one is looking for and there is a set treatment. It is more difficult to screen for the risk of sudden cardiac death. However, heart checks should and must be done because most of the conditions are diagnosable and treatable. My colleague, Dr. Joseph Galvin, will speak presently about a conference he will attend later this year.
We have no structure in place to check young people's hearts. This is a serious problem which must be addressed urgently by way of an organised and co-ordinated approach. We are extremely concerned that private companies may seize the opportunity presented by the demand that exists and that there may not be adequate standards and protocols. There must be a co-ordinated top-down approach.
The European Society of Cardiology has recommended a common European protocol for pre-participation screening of athletes. This endorses the International Olympic Committee protocol which is in place since 2004. In Italy, sudden cardiac deaths have been reduced by 89% as a result of the screening process that has been in place for athletes for the last 25 years. However, we must bear in mind that it is not just athletes who are at risk. It is estimated that only some 15% of sudden cardiac deaths occur in athletes.
Ireland was the first country to impose a levy on plastic carrier bags and to impose a wide-ranging ban on smoking in public places. There is no reason that we cannot become the first heart-safe country in the world. We already have two centres for screening affected families. It will not require much to ensure more appropriate heart checks for young people who request them. Defibrillators are selling like hot cakes. There has been little or no cost for the Government because people are willing to pay for heart checks and the groups concerned are raising funding to provide automated external defibrillators. We have a low population and close community networks. The provision of defibrillators should be made mandatory in workplaces and schools throughout the State. An issue to examine is the VAT rate of 21% on these devices. I understand this is an issue for the EU, but the Government must lobby to reduce it.
We have asked the Department of Education and Science to introduce basic life support training into the school curriculum for the 27,000 transition year students and to support our initiative to provide CPR kits to these pupils. The kits, which cost €25 each, are part of a self-learn programme and include a DVD, booklet, instructions on how to perform CPR and a blow-up dummy called CPR Annie. I understand Dunnes Stores are providing some funding towards this initiative. Other classes will seek to participate once they see how easy it is for transition year students.
The joint committee must play the role of advocate by leading and co-ordinating intergovernmental actions, whether legislative, fiscal or resource changes, and ensuring sustained Government and HSE commitment to the implementation of the task force recommendations. Members must ensure the necessary structures are in place and that CPR programmes and defibrillators are provided in local schools and workplaces. They must facilitate discussion and communication in their local areas. We ask the committee to work to ensure the 11 HSE posts are in place, that action is taken to reduce the rate of VAT on defibrillators and that toxicology services are provided sooner. We need a preliminary report and backing for our proposals for a transition year self-learn programme. Members are in a position of power and influence and their assistance is vital.
