20 years of preventing young sudden cardiac deaths through awareness, screening and research and supporting affected families Dr Steven Cox Chief Executive @drstevenjcox
Overview
Achievements Finance Ringfenced Funds Developments in 2016 Representatives
Achievements Finance Ringfenced Funds Developments in 2016 Representatives
Achievements Since 1995 CRY has; • screened well over 80,000 young people (soon will pass 100,000) • funded 14 (+7 being trained) research fellowship grants • published over 100 articles, book chapters & academic papers • established the • CRY Centre for inherited Cardiovascular Conditions & Sports Cardiology • CRY Centre for Cardiac Pathology • held 10 annual International Medical Conferences on Sports Cardiology & YSCD • attracted over 100 MPs to the Cardiac Risk in the Young APPG • successfully informed government policy leading to new NHS guidelines for referrals after a young sudden cardiac death
Achievements Finance Ringfenced Funds Developments in 2016 Representatives
How CRY spends donations % of donations going to CRY's aims Goes to CRY's aims Fundraising & governance Over 80p in every pound goes towards CRY’s aims awareness, support, screening & research
Online donations Up by 23% Virgin money giving is the best way to donate to CRY 2007 2008 2009 2010 2011 2012 2013 2014 2015 Total raised online (inc. ga) £359,735 £369,910 £538,059 £619,797 £701,985 £1,006,496 £1,090,521 £1,164,099 £1,436,755 Total number of donations 8,067 9,803 14,755 16,280 19,756 28,351 33,082 35,786 40,093 Average donation amount £44.59 £37.73 £36.47 £38.07 £35.53 £35.50 £32.96 £32.53 £31.08 Total pages created 261 393 546 827 1,002 1,152 1,202 1,447 1,620 Online Donations Average Average Donation Pages No. of Donation inc Gift Aid Created Donations Raised Gift Aid £28.04 £33.84 Just Giving 776 17,855 £500,601 £103,532 £31.87 £37.42 Virgin Money Giving 838 22,092 £703,971 £122,802 £33.34 £40.06 BT MyDonate 6 146 £4,867 £981.50 Total 1,620 40,093 £1,209,439 £31.08 £227,315 £37.11
Achievements Finance Ringfenced Funds Developments in 2016 Representatives
Cost of CRY screening Screening is currently subsidised by Professor Sharma and CRY Screening is what makes CRY unique, it is what we do £3,500 charge to test 100 people covers the cost of - field staff (salaries, food, hotel and travel) - the office based screening co-ordinators and management It does not cover the cost of the - research fellow (dr on the day), their training / clinical supervision - insurance - machinery depreciation Machinery (van, ECG ECHO machines) is covered by grants from ringfenced funds and trusts who donate cardiac machinery to CRY January 1 st 2017 - increase private screenings to £50 per person - increase screening income by £100,000 / year
Ringfenced Funds 484 memorial funds – 212 ringfenced If or when to put up the cost of ringfenced fund screenings for CRY families, what is the right way to do this? CRY families who take forward screening • Raise awareness of CRY – keep our message out there – media / facebook • Provide a service to 10s of 1000 of young people every year • Engage 1,000s of people in CRY • Support CRY core funding through “gift aid” on donations If or when we do put up the cost we think the best way would be to give 1-2 years notice and confirm any events booked before a specified date would be at £35.There would be no time limit for how far ahead they could book. New funds would first have to raise £3,500 then be charged at £50 per person Keep St George’s regular clinic at £35
Ringfenced Funds 484 memorial funds – 212 ringfenced If or when to put up the cost of ringfenced fund screenings for CRY families, what is the right way to do this? First to identify ringfenced funds which are not active! “Please note that CRY reserves the right to use ringfenced funds to support the CRY screening programme when a screening event is not organised within four years of setting up the ringfenced fund .” In south east - take over funding “St George’s screenings” (20+ screenings per year at £35 per person) In sport - EIS screenings – 10-20k per annum Support CRY referral centre (Dr Michael Papadakis / Physiologist / Administrator)
Achievements Finance Ringfenced Funds Developments in 2016 Representatives
CRY Centre for Inherited Cardiovascular Conditions & Sports Cardiology Expanding this unique service in 2016 Currently fund Professor Sharma’s team at St George’s (£500k per year ) - Nurse, physiologist and 8 fellowship grants. Increase grant to Prof Sharma to £650,000 (£682,500 including University overheads) support the expansion of screening and ICC clinics - Include a CRY Cardiologist (70k) - Supervision of research fellows / papers Master’s training course (October) / CRY conference / EACPR / Ethics - Support for Prof Sharma – as we grow he needs support - - Administrator (30k) - Support nurse who current does admin work/booking appointments - Additional physiologist (50k) - 5% contribution to grants to cover University overheads
Achievements Finance Ringfenced Funds Developments in 2016 Representatives
Keeping updated with CRY Day to day communications with supporters • Update – always 3-6 months out of date! • Enewsletter • Click through to upcoming events • Twitter (what is happening now) • Facebook (media clips or short videos e.g. John Inverdale) • Instagram (short awareness videos) • Screening interest form http://c-r-y.us9.list- manage.com/subscribe?u=bb9eea4e8db4652e04e295506&id=0076 55e445 If you are wanting to promote screening events in your area you will be told when events go up online
Keeping updated with CRY Regular emails to representatives • Changes to home page on website • Changes to representatives page on website • Not designed to replace enewsletters or social media In the next few weeks we will be sending a few emails to you 1. PR – opt in to being directly contacted by Trinity 2. Social media – asking Twitter handle, facebook URL, instagram. If not sure about anything ask Ruth Lowe
Representatives www.c-r-y.org.uk/representatives Updating the website page • Key messages • Videos (Beaten) • Links to videos (for social media/emails…) • “Standard” CRY tweets • Media pack • New presentation • Postcard images
Awareness
Awareness of young sudden cardiac death . 2004 Private members bill 2004 8 a week postcard 2005 NSF chapter 8 2008 12 a week postcard 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 Anecdotal evidence 2004 At least 8 every week Anecdotal evidence 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 P21
Awareness CRY Manifesto A national strategy for the prevention of Young sudden Cardiac Death is needed to synchronise UK policies and lead to a dramatic reduction in 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 P22
Awareness Postcard Campaign Put on hold due to significant changes in parliament / government P23
Awareness Open day September event cancelled Expensive High risk if low attendance Needs to be linked with a major event More informal In 2016 we will be focusing on the Bridges Walk More staff attending Major event of the year to bring families together New venue – potentially 4000 people P24
Awareness www.yscd.org.uk 540 families have so far supported the campaign P25
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 P26
Recommend
More recommend
