Sudden Arrhythmia Death Syndrome
The final item of business is a members’ business debate on motion S3M-7393, in the name of Jim Hume, on sudden arrhythmia death syndrome—SADS. The debate will be concluded without any question being put.
Motion debated,
That the Parliament recognises the devastating impact that the death of an apparently healthy young person from a previously undiagnosed heart condition can have on the friends and family of the deceased; further recognises that, on average, 12 people in the United Kingdom die each week from a heart condition associated with sudden arrhythmia death syndrome (SADS); understands that this figure is likely to be less than the actual total because of the difficulties that it believes exist in accurately identifying and recording such deaths; congratulates the work of charities such as Cardiac Risk in the Young and the Selkirk-based Scottish HART for highlighting the deaths of young people from SADS and campaigning for greater awareness; welcomes the Cardiac Assessment of Young Athletes programme run by Professor Stewart Hillis, which screens young people involved in amateur sport for potential heart conditions, and wishes to see a greater awareness of deaths in young people from SADS.
17:03
I thank members who have remained behind to participate in the debate. I also thank those who signed my motion in order to make the debate possible. Among them are health spokespeople from the three main Opposition parties, which I found particularly pleasing.
Sudden arrhythmia death syndrome is not easy to say, but it can also be called sudden death syndrome or sudden cardiac death. Those are all umbrella terms pertaining to a number of conditions that lead to the sudden deaths of young people every day. However, despite those daily tragedies, many people are still relatively unaware of the terms.
Leading charities, such as Cardiac Risk in the Young, estimate that at least 200,000 people under the age of 35 in the United Kingdom have a cardiac condition that is capable of causing sudden cardiac death, which could mean that as many as 16,500 people are in that situation in Scotland alone. Although many of those people will live normal lives, never knowing that they are at risk, it is important to note that they will still be genetic carriers of an abnormality that could, with more serious consequences, be passed on to their children.
Unfortunately, the Gunn family in Selkirk is all too well aware of the dangers of one heart condition that can be responsible for sudden cardiac deaths. Wilma Gunn decided to dedicate her life to raising awareness of sudden cardiac deaths following the death of her son Cameron. She established Scottish Heart at Risk Testing 14 years ago and has a record of achievements of which she should be proud. Money raised by Scottish HART has gone towards supplying a number of defibrillators to schools, fitness centres and swimming pools across Scotland, and they have already saved lives. In her attempts to raise awareness, Wilma has met Government ministers and presented evidence to parliamentary committees. Thanks to Scottish HART, an important annual sporting fixture in the Borders is the Cameron Gunn memorial soccer sevens tournament. The event has grown so large that it is now run in conjunction with Scottish Borders Council and the Scottish Football Association. It involves more than 1,000 youths every year and it is an important means of fundraising for the charity.
Cardiac Risk in the Young, or CRY as it is sometimes called, deserves enormous credit for the work that it has done in the past 15 years. During that time, it has been at the forefront of campaigns to raise awareness of sudden cardiac deaths in young people. Its activities include supporting bereaved families throughout the United Kingdom, conducting heart screenings, research, and lobbying politicians and the medical profession to raise awareness of SADS issues. CRY should be commended particularly for offering significant grants to trained cardiologists who will continue to work in the national health service as experts in SADS-related conditions.
Before this evening’s debate, I made inquiries of the University of Edinburgh regarding the structure and content of its physical education teacher training programme. With some of the conditions there are warning signs, and if they are detected early enough, that can lead to a diagnosis and the ability to effect life-saving lifestyle changes. PE teachers are ideally situated to spot the warning signs, so I was intrigued to learn whether they have the necessary skills to do so. I understand that, following the introduction of curriculum for excellence, there is now a focus on the wellbeing of pupils, and that this year’s intake of PE teaching students at Edinburgh will be the first to leave university equipped with such skills when they graduate in 2014. I certainly welcome those amendments to the course structure.
However, before this year, only students who undertook more scientific modules would have gained the necessary knowledge, and those modules were not compulsory. I wonder whether the minister will be willing to look into that and investigate the possibility of giving existing PE teachers some retrospective training in the symptoms of heart conditions. I imagine that most 13 or 14-year olds would not readily associate dizziness or shortness of breath from exertion with a heart condition, but if their teacher did so, it could make all the difference. I am not suggesting a full course for PE teachers; perhaps a brief lecture from a physician or some educational literature would suffice.
Although that approach would be helpful, we must be mindful that the first time many people who fall victim to sudden cardiac death become symptomatic is when they die. The only way to combat that is to screen young people for heart conditions. That is why the Government deserves credit for supporting Professor Stewart Hillis’s cardiac assessment of young athletes programme, or CAYA. In the answer to a parliamentary question last month, I learned that 176 of the 885 individuals who had been screened up to that point had been referred for further treatment. Many of those cases involved elevated blood pressure. My concern is that the commendable CAYA programme is largely geared towards those who compete in organised amateur sport. Those sporting individuals who keep active, but do so outside organised competition, are in danger of slipping through the net. For every weekend amateur footballer or cricketer, there are many people who jog or cycle after work or play five-a-side football with colleagues, as Cameron Gunn was doing when he passed away.
I am fully aware that blanket screening is not feasible because of budgetary constraints and the lack of medical professionals in the NHS who have experience of electrocardiogram and echocardiogram manifestations. I understand that most of the CAYA programme’s subjects thus far have been male and involved in team sports, but that there is a capability to offer satellite clinics. I would be interested to know whether the additional funding that was announced in October will allow the CAYA programme to move into leisure centres and gyms to screen those who would otherwise miss out on the opportunity.
SADS is a phenomenon that strikes without discrimination. It is thanks only to the actions of charities such as Cardiac Risk in the Young and Scottish HART that we are beginning to understand that previously unexplained deaths were, in fact, the result of heart conditions.
The CAYA programme is a good start, but it would be desirable to have many more of our country’s young people screened for heart defects. It costs the NHS just £38 to operate an electrocardiogram machine on a patient, which has the potential to save a person’s life.
Perhaps in the future we will have a programme to rival that in Italy, which has virtually eradicated sudden cardiac deaths in sport and has led to a greater recognition of such deaths in that country.
17:10
I congratulate Jim Hume on bringing the debate to the chamber; I know that he has had a difficult day, so I congratulate him even more for staying the course.
I pay tribute to other members of the Parliament who have raised awareness of cardiomyopathy and the work of Scottish HART. Euan Robson, one of Jim Hume’s predecessors in the Parliament, first lodged a motion on the issue in 1999, followed by Johann Lamont in 2001, me in 2003 and Rosemary Byrne in 2004.
The campaigning by outside organisations that are involved in cardiomyopathy prevention has made progress, and all parties have responded to it. I thank Malcolm Chisholm, who was then the health minister, for meeting Wilma and Kenny Gunn, who are my constituents as well as being constituents of Jim Hume.
Malcolm Chisholm—and more recently Nicola Sturgeon—gave up a lot of time to discuss the issues with them. That shows that, with a heartfelt commitment to an issue that requires attention, ordinary people can, with determination, change things in the Parliament, and it shows that politicians do listen and that there are results.
Jim Hume referred to the petition that Kenny and Wilma Gunn submitted following the tragic death of their son, Cameron, as a teenager, after taking part in very active sport, and he described how that was another step forward.
As Jim Hume said, the condition affects young people who are very active in sports. Cardiomyopathy is a thickening of the muscles in the heart that often goes undetected but is present at times of rapid growth in adolescence. It can manifest itself in the teenage years, particularly when someone is taking strenuous exercise, so a lot of young sporting people can be vulnerable to it.
Following the petition, and further meetings with and representations from Kenny and Wilma Gunn and Scottish HART, the Cabinet Secretary for Health and Wellbeing launched a pilot screening programme, in conjunction with health professionals and the Scottish Football Association, at Hampden park. It involved screening amateur athletes aged 16 or over for life-threatening conditions.
As a little caveat, I have some concerns about blanket screening. The pilot involved voluntary screening, but blanket screening could give rise to issues in relation to applying for jobs and insurance, when people are asked whether they have any underlying health conditions. We should consider those issues carefully, so I am content at present with voluntary screening for particular groups.
The cabinet secretary has put in a further £150,000 of funding to extend the screening pilot over the coming years. So far, it has found 400 youngsters who have exhibited risk factors that range from mild to serious. Even one life saved is excellent, so the programme is making wonderful progress.
I congratulate Wilma Gunn for continuing to work hard on the issue. She has been campaigning for the provision of defibrillators in public areas such as large supermarkets, airports, train stations and bus stations. Scottish HART has so far managed to get 30 of those in Scotland; that is the most recent figure that I have. That is another excellent step forward.
I congratulate Kenny and Wilma Gunn, who have embraced all political parties and none, pursued the issue and worked with Professor Stewart Hillis. Wilma never lets go—she is a determined woman, and her determination has probably saved lives.
17:14
I, too, congratulate Jim Hume on securing this important debate, and pass on my condolences. He is determined to continue to press the issue in difficult times.
Members will be relieved to hear that I do not intend to make a long speech, but I would like to follow on from what Christine Grahame said and make a couple of relevant points.
I recognise the critical role of sudden arrhythmia death syndrome campaigning groups and the way in which such groups can inform and shape health policy more generally. In particular, I want to mention the Cardiomyopathy Association and the Scottish support group because of the critical role that they have had in highlighting important issues. There is often campaigning activity and determination to raise issues in times of great personal loss. People are driven and focused even when they face the most tragic circumstances, and they determine that what has happened should not happen to somebody else. I stand in awe of everybody who is able to do that in the face of such thoughts. They are able to look at their experience, to determine that others should not experience the same, and to try to progress things.
I want to mention Irene and Bob McConnachie, who are constituents of mine and are now friends. They lost their son and had a particularly traumatic experience following that loss. They were to be tested to see whether there was anything in their genetic make-up, and the journey proved to be horrendous for them. It involved having to go, until very recently, for screening and testing and follow-up work in London. They realised then the extent to which the medical profession is unaware of the condition’s potential to affect the broader family. Perhaps we are not talking about across-the-board screening, but family screening where there has been an impact on the family and finding a way of supporting people through it are critical. It is understandable that there is a lot of coverage in newspapers when a high-profile footballer or athlete loses their life as a result of the condition, but the question is what should be done for the broader family to find out whether they are at risk as well and whether they can be supported.
I recognise that there has been a significant development in Scotland. Bob McConnachie, whom I mentioned, is in a group that has been developing the familial arrhythmia network for Scotland, which has done a presentation to Helen Eadie’s cross-party group on heart disease and stroke. The critical issue for it is supporting families and bringing together clinical geneticists, cardiologists and families to try to develop protocols so that people do not have to go on the horrendous journey that my constituents went on. I would welcome any comments or information from the minister on how that work is being progressed. As in many other areas, people’s energies, commitment and understanding are being harnessed so that they can come together and say where there is a flaw or gap in health provision. The health professionals can then respond in a positive way and, critically, maintain understanding and awareness of issues among our young people and, more broadly, among families and the medical profession.
I commend Jim Hume for his motion, and everybody who has continued to make all the political parties focus on the matter, and would welcome an update from the minister on how matters are being progressed at Scottish Government level.
17:18
I am pleased that Jim Hume has brought to members’ attention once again sudden arrhythmia death syndrome, and I congratulate him on securing the debate. I also add my condolences and my admiration for his decision to attend the debate.
We are all familiar with newspaper headlines—we see them from time to time—about the sudden death of a fit young person on the football pitch, the running track or the rugby field, and we all lament the wasted potential and the lost years to a group of talented, athletic people who are ideal role models for youngsters who aspire to develop their physical talents and fitness. A number of those unexpected deaths are due to the sudden onset of a fatal arrhythmia that could have been prevented if the victim had been screened to detect an underlying heart condition.
SADS was first brought to my attention soon after I became an MSP by the founder of Scottish HART, Wilma Gunn of Selkirk. She has campaigned tirelessly to raise awareness of the syndrome since her son suddenly died as a result of an underlying heart condition. She enlisted my help and made me, along with other MSPs, a patron of Scottish HART. I did what I could at the time to achieve her ambition to have screening carried out on young people to identify young athletes who might be at risk.
Like Christine Grahame, I recall an interesting meeting in St Andrews house with Mrs Gunn, Professor Stewart Hillis, Malcolm Chisholm—the then health minister—and some of the Executive’s health team. The clear advice from the national advisory committee was that such screening of young people was not considered appropriate.
Undaunted by that and supported by Professor Hillis, Wilma Gunn pursued her case and continued to raise awareness of SADS across the country. As we have heard, she raised money for defibrillators and presented them to sporting organisations, including Aberdeen Football Club at Pittodrie. Although those machines do not prevent the occurrence of potential fatal arrhythmias, they have made possible the immediate treatment that offers the only hope of survival to the unfortunate victims.
The cardiac assessment in young athletes pilot programme that is based at the Hampden sports medicine centre and run by Professor Hillis was therefore warmly welcomed when the Cabinet Secretary for Health and Wellbeing launched it just over two years ago. I am delighted that it has been so successful that the Scottish Government has extended it for a further two years, allowing its expansion to include satellite assessment units that can be taken into rural parts of Scotland. The screening of 800-plus people aged between 15 and 25 has revealed a number of cardiac health issues, and early intervention thereafter has prevented the occurrence of more serious complications while allowing the young people concerned to take part in competitive sport, which is particularly important.
I am glad that the prevention of SADS is being taken seriously in this country and that the programme of cardiac screening of young athletes is providing an accurate and informative bank of research data that can be used as a reservoir for the development of future expertise. However, I wonder whether matters would have progressed this far so quickly without the dogged determination of people such as Wilma Gunn to keep up the pressure on Government. We should pay tribute to charities such as Scottish HART and Cardiac Risk in the Young for highlighting the preventable deaths of young people from SADS and for campaigning resolutely to raise awareness of the condition among the population of Scotland.
I hope that the next phase of the screening pilot is as successful as the first and I look forward to the day when all those embarking on strenuous sporting activity can be offered appropriate screening if they so wish, because every preventable death in a young person is a tragedy that should be avoided if at all possible. I am happy to support Jim Hume’s motion and I look forward to the minister’s response.
17:22
I, too, welcome the opportunity to participate in the debate, and I congratulate Jim Hume on obtaining it and on pursuing the issue.
SADS is a pretty horrendous thing for a family to go through. I will raise a slightly different issue, although Johann Lamont alluded to it: the bereavement that the families go through. Unexpected deaths in young adults are some of the harder bereavements that have to be gone through—they are difficult. Many of us will have had constituency cases in which a young adult has suddenly dropped dead. In my case, a constituent and neighbour suddenly dropped dead on a rugby field in America. Such deaths are absolutely devastating events and it takes a long time for families to recover, so they need adequate support. CRY certainly does some work to provide that.
We are told that about 12 young people die every week in the UK of an undiagnosed heart problem. Therefore, the question properly arises as to whether there should be universal screening. However, universal screening is undertaken only if certain rules are complied with and certain precepts are fulfilled. The general view is that, at present, a universal screening programme is not appropriate. That is not because of the reasons that Christine Grahame mentioned about a programme being mandatory, as the programme would always be voluntary, but because it might not fulfil all the precepts and principles. To those who are interested, I commend a recent debate on the issue in the British Medical Journal. It was one of the journal’s yes-no debates, in which one person argues for a proposal and another against.
I understand the member’s point about the mandatory aspect, but I seek his advice. Is it not the case that such tests would be mandatory for young men who were looking forward to a football or athletics career?
Yes, certainly. Those of my age can remember a certain footballer—I have forgotten his name for the moment—who, on being transferred to Manchester United, was found to have a heart murmur. The whole process was held up. As part of a contract of employment, the test may be mandatory, but we are talking about the much wider base of amateur sport.
As Jim Hume said, Italy has introduced much more general testing, which has been pretty successful. The question then arises of how many false positives there are, and how much distress is caused when conditions that are not serious are found. Both the person and their family can be put through considerable difficulty.
Although I very much welcome the debate, we have to be very careful about how we proceed. In that regard, I welcome in particular the programme that the Scottish Government has set up. It has already had an initial evaluation, which led to an extension, and will be further evaluated. We will see from that exactly how it proceeds. Obviously, the situation needs to be watched.
Organisations such as HART and CRY are essential to maintaining public interest and to ensuring that professionals do not simply dismiss SADS because it involves small numbers. It is important that the issue is looked at carefully.
Other measures can be taken on a much more general basis. We have heard about defibrillators in supermarkets. Indeed, I promoted the fact that the Thistles shopping centre in my constituency obtained two defibrillators and trained staff in using them. In my practice, we trained shopkeepers in the village so that they could undertake cardiopulmonary resuscitation. More general CPR of the sort promoted by the temperature post cardiac arrest—TOPCAT—programme in Lothian can produce benefit by way of allowing people to give rapid CPR until the appropriate staff arrive. We do not do rapid CPR well in Scotland at the moment. We need to extend such programmes.
Genetics are an important consideration. The future may lie in identifying and examining mutated genes. Further examination of ion channelopathies, as they are called, and the genetics that underpin them may make the condition not one that we have to debate every session of the Parliament but something that is dealt with by way of genetic testing, which may be easier in future.
17:27
I, too, thank Jim Hume for introducing this very important debate. I recognise his very direct and personal interest in this serious and complex issue.
The sudden and unexpected death of a youngster is absolutely a tragedy. As members have said, such deaths are frequently caused by an inherited cardiac condition. It can be an inherited disorder of the rhythm of the heart, such as long QT syndrome, or an inherited disorder that causes abnormal thickening of the heart muscle in, for example, cardiomyopathy. Although the motion refers specifically to sudden arrhythmia deaths, I will broaden my reply to cover sudden cardiac death of young people in general. What makes these deaths particularly devastating is that the young person usually has no symptoms; there is no indication that they are at risk.
The conditions are difficult to diagnose. At the moment, there is no diagnostic test that can predict with accuracy the outcome for any individual. That is why the national screening committee advises against having a population screening programme for sudden cardiac death. As Richard Simpson outlined, there are also concerns about wrongly labelling someone as being at risk. That could restrict the activities of many children who never go on to develop clinical problems. As has also been said, it could also cause difficulties in adult life with employment, insurance and mortgages. However, the committee is very clear that close relatives who have lost a family member to sudden cardiac death should be offered tests and advice. We have accepted that advice.
There is a section on inherited cardiac conditions in our better heart disease and stroke care action plan. The key to getting a better grasp of these conditions is to bring together cardiologists, clinical geneticists and pathologists, since each have a part to play. We are very fortunate in Scotland to have a mechanism that does just that, and very effectively. I refer to the familial arrhythmia network Scotland, or FANS, which is much easier to say. I put on record our appreciation of the work that FANS is doing through its lead clinician, Dr Anna Maria Choy and her colleagues.
FANS is clear that reducing the risk of sudden cardiac death involves a number of different approaches. First, it means targeting the young people who are at highest risk. That includes those with a close family member who has been diagnosed with an inherited condition that carries a risk of sudden cardiac death. It also includes young people who are taking part in competitive sports. As has been pointed out, the Government is funding the cardiac assessment of young athletes programme at Hampden Park, which is a voluntary programme that is open to young sportspeople aged between 15 and 25. The programme breaks new ground by using an echocardiogram—a two-dimensional image of the heart—to help with the accuracy of the assessment process. Recently the Cabinet Secretary for Health and Wellbeing announced that we are providing further funding to allow the programme to run for another two years. The results will help the national screening committee’s further consideration of the issue.
The next issue on FANS’s list is improving professional and public awareness of inherited cardiac conditions. On the professional front, FANS organises national symposia and it is undertaking a survey to gauge the level of knowledge of the conditions among general practitioners, cardiologists and nursing and allied health professionals across Scotland.
To raise public awareness, the network produces newsletters, leaflets and patient materials. It also has close links to key voluntary sector organisations such as Scottish Heart at Risk Testing and the Cardiomyopathy Association in Scotland. I pay tribute to those voluntary bodies for the valuable work that they do to provide information and support to families. That includes the work of the British Heart Foundation, which last year launched its genetic information service to help relatives deal with the consequences of losing a loved one to an inherited cardiac condition. The service’s helpline assists bereaved families to have an assessment at a specialist clinic.
Jim Hume asked about the training of existing PE teachers in heart conditions. I am happy to look into that, but it may already form part of heartstart, the cardiopulmonary resuscitation programmes that the British Heart Foundation offers in schools. I will pursue the matter and let the member have more information.
Improving referral and care pathways is another of FANS’s objectives for reducing the risk of sudden cardiac death. The FANS website provides information for patients and health care professionals on who should be referred to specialist cardiologists and clinical geneticists and where they are based. Referral of those with a suspected inherited arrhythmia to one of FANS’s regional services has been included in the NHS Quality Improvement Scotland clinical standards for heart disease.
FANS has developed and ratified clinical protocols, which it keeps up to date so that clinicians can deliver the best evidence-based care. It is also developing standards of care for inherited cardiac conditions. That will pave the way for audits, leading to subsequent improvements in the practice and delivery of care.
FANS is also working with the Information Services Division of NHS National Services Scotland to develop a national registry of inherited cardiac conditions. That will make it easier to screen and follow up individuals and families, while avoiding duplication of expensive tests and reducing patient inconvenience.
Through the pathologists who are involved with FANS, the registry will be linked to the UK sudden cardiac death pathology database, which was launched late in 2008. Pathologists will obtain important information from careful post mortem examination of young sudden death victims. The database will ensure that that information is recorded and retained centrally and help those who are assessing the relatives of the young people concerned. It will also provide better data on the frequency of sudden cardiac death.
I should say a word about the availability of public access defibrillators. Our heart disease and stroke action plan highlights their importance and calls on the cardiac managed clinical network in each NHS board to carry out an assessment of the need for them. I am again grateful to the British Heart Foundation for providing information from its mapping exercise that shows the location of public access defibrillators across the UK. That will help the MCNs with their assessment of local provision.
I very much support what the motion says about the need for greater awareness of sudden cardiac death. I hope that it will be clear from what I have said that the Government takes the issue seriously. We have highlighted it in our action plan and are fortunate that FANS is so active in the area. I congratulate all its members and the voluntary sector bodies that are associated with it on the excellent work that they are doing to improve services for all of those who are at risk of sudden cardiac death.
Meeting closed at 17:34.