preventing young sudden cardiac deaths through 20 years of preventing young sudden cardiac deaths through awareness, screening and research and supporting affected families

Awareness of young sudden cardiac death . At least 12 young sudden cardiac deaths every week in the uk in those aged 35 and under caused by undiagnosed cardiac conditions The number of apparently fit and healthy young people believed to be dying every week in the UK of undiagnosed heart conditions 1995 Only 1 a week Anecdotal evidence 2000 4 to 8 a week 2004 At least 8 every week 2008 At least 12 every week published data (ONS*)

Awareness Preventing young sudden cardiac death Family history of Young Sudden Death Symptoms that put you at risk chest pain (exercise related) passing out (syncope) breathlessness palpitations dizziness Those at risk with NO Symptoms www.testmyheart.org It is very important that all young people understand the symptoms to look out for. Although some of the symptoms may be arbitrary (like breathlessness and palpitations), symptoms like passing out and especially exercise related chest pain are very important to investigate further. P4

Incorrect cause of death Incorrect tests for other family members Support through expert cardiac pathology After a young sudden cardiac or unascertained death expert cardiac pathology is ESSENTIAL - Help families understand the cause of death - Inform clinicians what to look for in other family members (1st degree blood relatives) CRY funds the CRY Centre for Cardiac Pathology @ St George’s Lead by Professor Mary Sheppard www.cry-ccp.org.uk Incorrect cause of death Incorrect tests for other family members False reassurance

Support Guiding those families affected Following a young sudden cardiac, death families often seek emotional support and further information. Individual Support - CRY’s Bereavement Support Network 20 volunteers with experience of a similar tragedy CRY's accredited counselling training 2 year BAC accredited Counselling Skills and Theory course. CRY’s support people both on an individual level and in groups. Individual, this is done through one to one support with a bereavement supporter who will have had a similar experience and is provided with training to support other families. CRY also holds bereavement support days throughout the year around the UK. for both the family, but also specific days for siblings, partners mothers and fathers. Group Support - CRY’s Bereavement Support Days Specific days for siblings, partners, mothers and fathers The myheart network Support for those young people diagnosed with cardiac conditions P6

Support through expert fast track cardiac referrals (NHS) The CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology Professor Sanjay Sharma heads up a team of specialist doctors based at St. George's Hospital, London. Families will be seen - Within a few weeks of referral Together as a family unit All tests on the same day CRY funds the machinery, 9 doctors / research fellows, a physiologist, and a nurse The CRY centre at St George’s lead by Professor Sanjay Sharma is a unique service where after a young sudden death families will be seen within a few weeks for the referral being received at the hospital. They will conduct all the tests on the same day and make arrangements so the family (even when travelling from different parts of the country) can be seen together. CRY is able to do this because they fund 6 research fellows, a physiologist (for echo tests and exercise tests) and nurse at the centre. The Centre is also the leading referral centre for elite athletes whose results can often mimic disease and they can easily be misdiagnosed if not seen by an expert cardiologist. At the weekends CRY run regular cardiac screening clinics at the centre, where people will travel to from all over the country. P7

www.testmyheart.org #testmyheart Screening Giving young people the choice to be tested Most cardiac abnormalities will be identified via an ECG Quick - Painless - Affordable 89% reduction in young sudden deaths (YSCD) when screening is implemented 1 in 100 have less serious cardiac abnormalities (problems in 40s) 1 in 300 people have potentially life threatening conditions 80% of SADS deaths occur at home or during rest 80% of young sudden cardiac deaths have no symptoms CRY’s screening service is available to any person aged between 14 and 35. www.testmyheart.org #testmyheart P8

www.testmyheart.org #testmyheart Screening Giving young people the choice to be tested Screening is now routine in many sports in the UK and abroad European Society of Cardiology (ESC) recommendation – all young people should have an ECG prior to participation in sport In some professions (Pilots/premiership footballers) cardiac screening is mandatory In Italy it has been law since 1982 for all young people to have screening with an ECG prior to participation in sport CRY’s screening service is available to any person aged between 14 and 35. www.testmyheart.org #testmyheart P9

Screening Giving young people the choice to be tested In 2015 CRY tested over 23,000 young people 75% will book a free appointment online in 3 clicks

Research #cryresearch Reducing false positives Reducing the costs Making a national screening programme feasible Referrals after abnormal findings

Healthy heart vs. Heart condition Research #cryresearch Reducing the grey area Improving sensitivity of tests #cryresearch is reducing the uncertainty Healthy heart vs. Heart condition Healthy heart Heart condition Healthy heart Heart condition ? ?

CRY Families Research Informing Policy and Practice Policy Research Clinical Practice Research (Science)

20 years of ….. Screening and Research CRY Families have funded over £2,500,000 to offer screening CRY Families have funded over £2,000,000 to fund research Resulting in over 100 peer reviewed publications Trained 21 CRY Research fellows Broaden expertise in young sudden cardiac death to other UK hospitals Creating an infrastructure of specialists throughout the UK P14

UK policy is inconsistent NICE / Department Health disagree with the National Screening Committee (NSC) DoH and NICE say the ECG is an important test and there are management pathways for people at risk. NSF chapter 8 – after a young sudden cardiac death families should be referred to heart rhythm specialists NICE T Loc (transient Loss of Consciousness) guideline – young people with syncope (passing out) referred for ECG NHS choices – ECG is the first test when cardiac conditions are suspected (WPW, Long qt, Brugada, Cardiomyopathy…) The National Screening Committee disagrees and says there is no evidence of the accuracy of the ECG For more information on CRY’s response to the National Screening Committee recommendation NOT to scree go to www.yscd.org.uk P15

A national strategy for the Prevention of Young Sudden Cardiac Death A national strategy is needed to synchronise UK policies and lead to a dramatic reduction in young sudden cardiac deaths in the UK The strategy will ensure action to increase: Awareness amongst medical practitioners and those at risk Support after a young sudden death, including expert cardiac pathology Screening for young people to identify cardiac conditions Research to inform policy and practice For more information on CRY’s manifesto go to www.c-r-y.org.uk/manifesto P16

Thank you for listening Helping CRY to raise awareness and save young lives Thank you for listening /CardiacRiskintheYoung One way that any person can help to support CRY is through social media. Just by following us on twitter and liking us on facebook makes a big difference. This is a great way of spreading the work and one press of a button 100s of people can learn more about what we do to prevent these terrible tragedies. @CRY_UK /cryvideos