20 years of preventing young sudden cardiac deaths through awareness, screening and research and supporting affected families Alison Cox MBE Founder and Chief Executive

. At least 12 young sudden cardiac deaths every week in the uk in those aged 35 and under caused by undiagnosed cardiac conditions Awareness of young sudden cardiac death

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 P4

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 (1 st degree blood relatives) CRY funds the CRY Centre for Cardiac St George’s Lead by Professor Mary Sheppard Support through expert cardiac pathology Incorrect cause of death Incorrect tests for other family members False reassurance

20 volunteers with experience of a similar tragedy CRY's accredited counselling training 2 year BAC accredited Counselling Skills and Theory course. Following a young sudden cardiac, death families often seek emotional support and further information. Group Support - CRY’s Bereavement Support Days Specific days for siblings, partners, mothers and fathers P6 Support Guiding those families affected The myheart network Support for those young people diagnosed with cardiac conditions Individual Support - CRY’s Bereavement Support Network

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 P7 Support through expert fast track cardiac referrals (NHS) The CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology

Most cardiac abnormalities will be identified via an ECG Quick - Painless - Affordable CRY’s screening service is available to any person aged between 14 and % 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 P8 Screening Giving young people the choice to be tested #testmyheart

Screening is now routine in many sports in the UK and abroad CRY’s screening service is available to any person aged between 14 and 35. 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 P9 Screening Giving young people the choice to be tested #testmyheart

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

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

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

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

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 P14 20 years of ….. Screening and Research Trained 21 CRY Research fellows Broaden expertise in young sudden cardiac death to other UK hospitals Creating an infrastructure of specialists throughout the UK

For more information on CRY’s response to the National Screening Committee recommendation NOT to scree go to 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 P15 UK policy is inconsistent NICE / Department Health disagree with the National Screening Committee (NSC)

For more information on CRY’s manifesto go to P16 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: AwarenessAwareness amongst medical practitioners and those at risk SupportSupport after a young sudden death, including expert cardiac pathology ScreeningScreening for young people to identify cardiac conditions ResearchResearch to inform policy and practice

/cryvideos Thank you for listening Helping CRY raise awareness save young lives Helping CRY to raise awareness and save young lives