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.

I have had a cardiac arrest, is there any way I can support this campaign?

If you have had a cardiac arrest and are aged 35 or under, we would encourage you to join the CRY myheart support network. We will keep a record of when you had the cardiac arrest and what caused the cardiac arrest; and you can then decide if you would like to be connected with a network of other young people who have had similar experiences. We are taking forward a number of initiatives with myheart members and by becoming part of this network you will be helping CRY to understand the impact of cardiac conditions on young people.

I am not an immediate family member, can I complete the form?

We have asked for only immediate family members to complete the form so we can be sure the family want the name of the person who has died to be part of this campaign. If for any reason the immediate family are unable to complete the form, but they would support you completing the form on their behalf, please contact CRY.

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.

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.

Why do many people think deaths only occur in those taking part in sport?

Many older studies base their figures on the number of young sudden deaths reported by the media. Often these are witnessed events of athletes during training or activity which is why these deaths are linked to sport. However, a significant proportion of young people die in their sleep or at rest. It is well established that media reports only represent a fraction of the number of actual young sudden cardiac deaths.

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.

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.