Is there a specific age range for being part of this campaign?
Normally we concentrate on the 14-35 year old age range but in this instance we also want to hear from anyone who has suffered the loss of a child under 14 years of age due to a cardiac condition and, at the other end of the scale, we want to hear of anyone aged 50 or under who has died from a cardiac condition. This will enable comparisons with other studies which use different age ranges. It will also enable comparisons with other causes of death and the different ways studies report incidence rates.
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.
I don’t have the post-mortem, how do I request another copy?
To request another copy of the coroner’s report, contact the coroner’s office. If they no longer have the record then enquire the name of the pathologist who provided the post-mortem report, or ask the coroner’s officer for advice about where you can obtain a copy.
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.