7th November 2008
National database hopes to cut deaths by making families & coroners more aware of ‘heart health history’
An announcement from the Department of Health and a collaboration of pathologists and heart experts has received praise from the campaigning and awareness raising charity, Cardiac Risk in the Young (CRY).
The establishment of a national pathology database – which will provide vital information about the frequency and demographics of sudden cardiac death as well as an assessment of families linked to these tragic conditions – comes just months after the charity opened its new ‘fast-track’ expert pathology Unit at London’s Royal Brompton Hospital.
CRY awarded a grant in excess of £200,000 to one the world’s leading pathological experts, Dr Mary Sheppard, to ensure that referrals from coroners of young people who had died suddenly were analysed quickly and a cause of death given within 2 weeks.
At the time of the launch in March (2008), Chief Executive and Founder of the charity, Alison Cox MBE said:
“We are delighted that the Department of Health has spearheaded this national database. The way these deaths have been recorded has been the focus of CRY’s campaign for over 13 years. Collating accurate national statistics has been fraught with difficulties which have led to significant problems in acknowledging that Young Sudden Cardiac Death is a major public policy issue.
“In 1995 we were told it was 1 death a week, in 1999 – 4 a week and in 2005, at least 8 a week. It is now acknowledged to be at least 12 young people every week as illustrated by our campaign launched in Westminster last month. This database will firmly establish what we already believe, that this is still a conservative estimate.
“The support of the Department of Health in this ambitious project is a tremendous acknowledgement of the courageous tenacity of our bereaved families who have not let these deaths be in vain. Every person has the right to know why their child has died. This database will not only help to understand the true incidence of these deaths but in the future will help families to at least know the name of the condition that caused these young sudden deaths.
“The impact of being told that your child died of natural causes cannot be underestimated. That is why CRY will continue to dedicate over £100,000 a year to the expert cardiac pathology service in the UK. The CRY Centre for Cardiac Pathology – CRYCCP – is one of the leading centres in the world and will work with this new database to help unlock the tragic mystery behind theses deaths, whilst continuing to ensure that families receive a swift and accurate diagnosis about the tragic death of the deceased.”
She concludes: “For years, we have been frustrated by the time it takes for families to get answers to their tragedy – prior to CRY’s fast track service families have had to endure a wait of anything from 3 to 18 months for answers after their devastating loss.
“Coroners are sometimes unable to access or fund a service where they can refer complex cases to an expert pathologist. This means that many deaths are simply recorded as unascertained or, incorrectly, such as epilepsy, asthma, drowning or accidental death. This initiative will start the process of highlighting these inaccuracies and is a strong declaration of just how seriously young sudden cardiac death is being taken.”
For more information, or to arrange an interview with Alison Cox for further comment about the new national database or CRY’s ongoing work or to speak to a family affected by young sudden cardiac death please contact Jo Hudson 020 8786 3860 / 0770 948 7959 or email firstname.lastname@example.org