Thank you for adding another voice to this campaign.
What does CRY want to achieve by this campaign?
The Government have said they will review the UK National Screening Committee (UK NSC) recommendation not to implement a national screening programme if new evidence is put forward. So if we can prove the UK NSC have drastically underestimated the incidence of young sudden cardiac death, the Government will have the opportunity to review its policy on screening.
Isn’t young sudden cardiac death rare? Aren’t you just as likely to be killed by lightning?
Young sudden cardiac death is rare compared to cardiac deaths in the elderly and middle-aged, but it is not rare compared to the other most common causes of death in young people (e.g. road traffic accidents, suicides, accidental poisonings, etc – http://www.ons.gov.uk/ons/rel/subnational-health1/leading-causes-of-death/2009/index.html). Many medical professionals and policy advisors still incorrectly think a young sudden cardiac death is as rare as being killed by lightning – which is simply wrong. This thinking is outdated, dangerous if applied to medical decision making and should have no place in modern scientific reports or policy recommendations.
Why are the UK Government figures wrong?
The Government’s advisors ignored or refused to consider key research papers and reports from CRY. This is shocking. 80% of coroners in the UK refer cases to CRY’s specialist cardiac pathology services after a suspicious young sudden death. CRY supported nearly half of the bereaved families affected by a young sudden cardiac death in the UK in 2014. CRY operates the largest national cardiac screening programme for young people of its kind. Since 1995 it has screened more than 80,000 young people and it now screens more than 20,000 young people a year. CRY is a respected international leader in research into young sudden cardiac death and inherited cardiac conditions.
We already know that there are 12 deaths a week, why do you need to do this campaign?
UK policy advisors only considered UK data from a national audit which suggested there is less than 1 death a week in the UK. They ignored CRY data and research which shows a much higher figure. This is an incredible insult to affected families; nearly half of the 600 families who experienced a young sudden cardiac death in 2014 (over 250 families) were supported by CRY. However, we believe if the government and policy advisors are confronted with the names of the young people who have died, not just a number, then they can no longer disregard our evidence.