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

3. 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*)

4. 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
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

5. 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 St George’s
Lead by Professor Mary Sheppard
Incorrect cause of death
Incorrect tests for other family members
False reassurance

6. 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

7. 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

8. 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.
#testmyheart P8

9. 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.
#testmyheart P9

10. 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

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

12. 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 ? ?

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

14. 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

15. 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
P15

16. 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
P16

17. 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