The CRY Centre for Cardiac Pathology moves to St George’s, University of London, alongside the charity’s world-renowned Centre for Inherited Cardiovascular Conditions
Since 2008, CRY has led the way in the UK in terms of ‘fast-tracking’ the pathology and analyses into the causes of unexpected sudden cardiac death in apparently fit and healthy young people.
Thursday 22nd May 2014 saw the charity, along with some of its most loyal and eminent colleagues, make a further commitment to supporting bereaved families and understanding the causes of sudden cardiac death in young people, with the official opening of the newly relocated CRY Centre for Cardiac Pathology (CRY CCP).
Every week in the UK, 12 young people (i.e. aged 35 and under) die from a previously undiagnosed heart condition. 80% of these people will have had no signs or symptoms – underlining the importance of understanding the condition which caused the tragic and premature death and ascertaining as quickly as possible if other family members might also be living with the same hidden condition.
Six years ago, a ground-breaking new unit was opened by CRY, based at the world famous Royal Brompton Hospital. The founding grant was thanks to the extraordinary fundraising efforts of a Surrey family who lost both a father and teenage son to sudden cardiac death. Father of three, Howard English, collapsed and died whilst playing rugby. He was 32. 10 years later, his eldest son Sebastian died, also playing rugby, aged just 15. It was then found both father and son had suffered from the same genetic condition – known as ARVC (Arrhythmogenic Right Ventricular Cardiomyopathy) – highlighting the importance of correct pathology after a sudden death, to ensure other family members are appropriately screened and treated by experts.
The new centre was the first to fully fund local coroners’ referrals to an expert cardiac pathologist. At the new CRY centre, the heart was then usually returned within 2 weeks (in time for the burial) and so coroners were more likely to ask the family if the whole heart could be sent to the pathologist, which greatly increased the opportunity of accurately establishing the cause of death. Prior to the introduction of CRY’s fast-track expert service, many families faced a wait of anything from 3 to 18 months for answers after their tragedy.
The service is led by one of the world’s leading cardiac pathologists, Professor Mary Sheppard, who has also moved across to the new CRY Unit at St George’s, University of London; and it is now estimated that at least 80% of all coroners in the UK refer to this fast-track service.
Professor Sheppard says; “Sudden cardiac death has a devastating impact on families – coming ‘out of the blue’ with no warning and often no explanation. However, from 2008, the service we were able to provide at CRY’s pathology centre has allowed us to help reduce the suffering of families by providing the much sought after answers regarding the actual cause of death.
“When the post mortem has been completed, screening can proceed to confirm whether any other members have inherited the same conditions. Only then can medical professionals take steps to ensure that the family is appropriately treated to protect them from another tragedy in the future.”
Professor Sheppard adds; “Over the years, the response we’ve had from coroners has been very encouraging and I believe we have played an important role in influencing coroners to understand how they can help families affected by a young sudden cardiac death and the crucial need to refer such cases to specialist pathology as a matter of urgency.”
As a charity, CRY has campaigned for nearly two decades for the necessary, drastic improvements to the UK’s Coroner’s Service and the importance of having expert pathology when a young person dies suddenly. Last year, CRY was delighted to welcome the appointment of the UK’s first Chief Coroner and the pledged improvements to the coronial service.
Chief Executive and founder of the charity, Alison Cox MBE, says; “For so long we were frustrated by the appalling length of time it took for affected families to receive the results from investigations into the cause of death – tragedies which occur without warning or explanation. We were very proud to know that our contribution – the launching of the CRY CCP – means real progress has been made towards ensuring that cases are now treated with sensitivity and urgency.
“Working with our fast-track cardiac pathologist, the cause of death can now be determined quickly, ensuring other family members can be assessed and screened once the underlying – and usually genetic – condition has been determined.”
CRY has long campaigned against the blanket use of a coroner’s verdict of ‘natural causes’ – a term the charity believes is devastating for a bereaved family to receive, as they are not familiar with the limited verdicts available for the coroner to choose from. There is nothing ‘natural’ to the family about the death of an apparently fit and healthy young person and, across the UK, coroners are now aware of the importance of including a so-called ‘narrative’ – supplied by the expert cardiac pathologist – that provides the family with some clear answers and further information and suggestions as to how to protect other family members.
CRY Patron, Baroness Ilora Finlay of Llandaff, also attended the official opening on May 22nd. She added: “CRY has had a huge impact in raising awareness of young sudden cardiac death with coroners and working to provide essential support services for those that have suffered a tragedy. Through the funding of this free, expert fast-track cardiac pathology, CRY has also helped to dramatically reduce the wait for a pathologist’s post mortem report for the bereaved family, who are suffering so grievously. I am impressed at the expertise this unit brings in the complex and tragic area of sudden cardiac death. It truly will save lives by detecting silent risk”
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