20 years of - PowerPoint Presentation

Slide1

20 years of

preventing young sudden cardiac deaths through

awareness, screening and research

and supporting affected familiesSlide2
Slide3

.

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 weekAnecdotal evidence2004At least 8 every weekAnecdotal evidence2008At least 12 every week published data (ONS*)

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 deathSlide4

Awareness

P

reventing 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

P

4Slide5

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’sLead by Professor Mary Sheppardwww.cry-ccp.org.uk Support through expert cardiac pathologyIncorrect cause of deathIncorrect tests for other family membersFalse reassuranceSlide6

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 DaysSpecific days for siblings, partners, mothers and fathers P6Support Guiding those families affectedThe myheart networkSupport for those young people diagnosed with cardiac conditionsIndividual Support - CRY’s Bereavement Support NetworkSlide7

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 nurseP7Support through expert fast track cardiac referrals (NHS)The CRY Centre for Inherited Cardiovascular Conditions and Sports CardiologySlide8

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 35.

89

% reduction in young sudden deaths (YSCD) when screening is implemented1 in 100 have less serious cardiac abnormalities (problems in 40s)1 in 300 people have potentially life threatening conditions80% of SADS deaths occur at home or during rest80% of young sudden cardiac deaths have no symptoms P8ScreeningGiving young people the choice to be testedwww.testmyheart.org

#testmyheartSlide9

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 sportIn 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 P9ScreeningGiving young people the choice to be testedwww.testmyheart.org #testmyheartSlide10

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 clicksSlide11

Reducing false positives

Reducing the costs

Making a national screening programme feasible

Referrals after abnormal findings

Research

#

cryresearchSlide12

Healthy heart

vs.

Heart condition

#

cryresearch

is

reducing the uncertainty??Reducing the grey areaImproving sensitivity of testsResearch#cryresearchSlide13

Research

Informing Policy and PracticeSlide14

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

P1420 years of …..Screening and ResearchTrained 21 CRY Research fellowsBroaden expertise in young sudden cardiac death to other UK hospitalsCreating an infrastructure of specialists throughout the UKSlide15

For more information on CRY’s response to the National Screening Committee recommendation

NOT

to scree go to

www.yscd.org.uk

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 ECGNHS 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 ECGP15UK policy is inconsistentNICE / Department Health disagree with the National Screening Committee (NSC)Slide16

For more information on CRY’s manifesto go to

www.c-r-y.org.uk/manifesto

P

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 riskSupport after a young sudden death, including expert cardiac pathologyScreening for young people to identify cardiac conditionsResearch to inform policy and practiceSlide17

/

CardiacRiskintheYoung

@CRY_UK

/

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Thank you

for listening

Helping CRY to raise awareness and save young lives