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There are also acquired conditions like myocarditis that can affect a person at any time. For this reason we always recommend that people return to CRY to be retested if they develop new symptoms after the initial test. The symptoms to look out for are chest pain (exercise related chest pain is particularly a red flag); syncope or passing out; palpitations; breathlessness (disproportionate to the amount of exercise); and dizziness. The fact that some conditions will be missed by screening is a key reason why CRY’s screening programme is part of a wider research programme. Through ongoing research it is hoped that one day we will be able to identify all conditions that can cause young sudden death and ensure that the risks of living with these conditions are fully understood and managed. However, the need to conduct more research does not undermine the importance of screening in reducing the number of young sudden cardiac deaths. As mentioned above, in Italy the incidence of young sudden cardiac death has been cut by 90%. This Italian research has informed international policies that either mandate or recommend cardiac screening prior to participation in organised sport. The current National Screening Committee policy on cardiac screening is inconsistent with current practice at an elite level in most sports in the UK - including guidelines followed by the Football Association; the Lawn Tennis Association; the Rugby Football Union; the Rugby Football League; England Cricket; the English Institute of Sport and the governing bodies of many other elite sports. Indeed, screening is often mandated for UK athletes when they compete outside the UK. The National Screening Committee policy has many limitations, including the basic errors of significantly underestimating the number of young people who die suddenly due to cardiac conditions; and underestimating the impact these deaths have on families, friends and wider community. Furthermore, in their evaluation of screening the National Screening Committee are not making the distinction between ‘specialists’ and ‘non specialists’ and how level of expertise relates to false positives. Cardiac screening needs to be overseen by a cardiologist with expertise in this specialist area of cardiology (i.e. conditions that can cause young sudden cardiac death). When a specialist cardiologist conducts the tests, the number of false positives and false negatives significantly decreases. That is, fewer people are told they may have a problem (and are subjected to further investigations) when they do not; and fewer people with a problem are mistakenly given an all clear. Specialist expertise is of paramount importance. The unique way in which CRY has specialist doctors at the front line when we conduct cardiac testing - and how we have integrated ultrasound into the routine ECG screening process - ensures that false positives, and the subsequent burden on the NHS for investigations that may be seen as unnecessary, are minimised. The reality is that the NHS does not have the infrastructure - neither the facilities nor the expertise - to immediately implement a national cardiac screening programme for all young people. However, CRY is leading the way in training specialist doctors, conducting research and providing educational resources so that this will be possible in the future.

12 • CRY update • Issue 57

Report from the CRY

Deputy Chief Executive Although the implementation of nationwide cardiac screening for young people is hampered by economic constraints and the lack of infrastructure and expertise, it does not mean that screening should not be recommended. On the contrary, these limitations should prompt the development of a collaborative approach between the government, the NHS, CRY and sporting bodies to provide cost effective screening for young people who choose to be screened for their own peace of mind and self-protection. As a society we want all young people to engage in sporting activities. Elite athletes are pushing their hearts to the limit on a daily basis and are therefore at greatest risk if they have an underlying cardiac condition. However, only a small percentage of sudden deaths in the UK are in elite athletes; most of the deaths are in people who live normal lives and may or may not participate in recreational, organised or competitive sport.

Centre for Cardiac Pathology

(CRY CCP)

By Jemma Reilly Ayton, Dr. Mary Sheppard’s medical secretary at the CRY CCP.

Dr Mary Sheppard Consultant Cardiac Pathologist

Jemma Reilly Ayton Medical Secretary

Dr Sofia de Noronha Research Assistant

Saharnaz Vakhshouri Laboratory Technician

Over the last four months the centre has received 62 sudden death cases.

Sport itself does not lead to cardiac arrest but can trigger a young sudden death by aggravating an undetected cardiac abnormality. The European Society of Cardiology (ESC) and International Olympic Committee (IOC) recommend cardiac screening for any young person participating in competitive sport. In countries such as Italy, screening for those participating in representative sport is mandatory. In some professions cardiac testing is also mandatory. Furthermore, medications that affect the heart must be avoided if you have an underlying cardiac condition. There are also NICE guidelines in place in the UK recommending that people who suffer a syncope episode should have an ECG. Syncope is common and occurs in at least 20-30% of the general population. There has been a great deal of progress in recent years in the way organisations - including sporting bodies, universities and schools have introduced cardiac screening. In time, we believe the advice that the government is given will take on board the true impact of these conditions - not just on the young people who are at risk, but also their families and wider communities. The NHS policy that “screening should not be offered” is currently discouraging young people who may be at risk of sudden cardiac death from having simple, non-invasive and potentially life-saving tests. The National Screening Committee needs to review its position, which is out of date. • The National Screening Committee policy should widen the remit to consider all cardiac conditions that can cause young sudden cardiac death. • The National Screening Committee policy directly contradicts the general NHS policy of “prevention”. Please support us by signing the petition to urge the government to review the position http://epetitions.direct.gov.uk/petitions/31819

The bar chart shows each month by an individual colour so you can clearly compare months and the overall total for that period.

Katsuya Norita (lab technician), attended the Frontiers in Cardiovascular Biology meeting (FCVB) and presented his poster: ‘Sudden death in congenital heart disease. A study from a specialist referral centre’ and presented Stephen Preston’s (researcher) poster on his behalf: ‘Mitral Valve prolapse and sudden cardiac death. Is there a cardiomyopathy linked to floppy mitral valve?’ Sharleen Hill (researcher) also attended and presented her poster: ‘A silent cause of sudden cardiac death: anomalous coronary arteries’. Katsuya is currently working on a project which involves stem cells as a therapy in ischemic heart disease in collaboration with The line graph shows our average turnaround time per month for the period of January to April in 2012. Our aim is to provide a final report within 14 days of receipt of specimen; this 14 days target is highlighted by the red arrow. In February 2012 there is a jump across (16.1) the target line and this was due to Dr Sheppard being

Best wishes,

away at the AIIMS (All India Institute of Medical Sciences) meeting in India for two weeks. Diagnoses

Steve Cox Deputy Chief Executive

The pie chart shows the diagnoses that were made during January to April 2012 indicating, again, that channelopathies predominate.

www.c-r-y.org.uk

Research

www.c-r-y.org.uk

Professor Stephen Westaby, John Radcliffe Hospital, Oxford. Recent publications 2012 1. Desai S, Sheppard MN. Sudden cardiac death: look closely at the coronaries for spontaneous dissection which can be missed. A study of 9 cases. Am J Forensic Med Pathol. 2012;33(1):26-9. Epub 2012/03/24. 2. Stone JR, Basso C, Baandrup UT, Bruneval P, Butany J, Gallagher PJ, et al. Recommendations for processing cardiovascular surgical pathology specimens: a consensus statement from the Standards and Definitions Committee of the Society for Cardiovascular Pathology and the Association

CRY update • Issue 57 • 13