The agonising wait endured by many families following the sudden – and tragic – death of a child or partner could soon be over as London opens the UK’s first ever ‘fast-track’ pathology laboratories to help analyse the causes of unexpected cardiac death in ‘apparently’ fit and healthy young people.
It is estimated that at least 12 young (i.e. aged 35 and under) people die every week in the UK from this condition. However, due to a lack of awareness and funding – that often leads to the incorrect or inconclusive recording of the cause of death – it is believed that this figure could be the ‘tip of the iceberg.’
The new Unit (The CRY Centre for Cardiac Pathology – CRYCCP) is based at the world famous Royal Brompton Hospital and was jointly established with support from Imperial College London.
Funded by the charity, Cardiac Risk in the Young (CRY) – thanks to the staggering efforts of a Surrey family [the Hunters] who lost both a father and teenage son to sudden cardiac death – the new centre will allow coroners to refer cases directly and receive a full report of the actual cause of death, usually within 2 weeks.
Currently, some families have to endure a wait of anything from three to eighteen months for answers after their tragedy.
A grant in excess of £200,000 has been awarded to one the world’s leading pathological experts, Dr Mary Sheppard. A pilot of the service has been run at the Royal Brompton for the past 10 months – during which time the team has received direct referrals from almost 100 coroners across the UK.
Dr Sheppard says; “Sudden cardiac death has a devastating impact on families – coming ‘out of the blue’ with no warning and often no explanation. However, the service at our new CRY Laboratories will enable us to play a small but vital part in helping people come to terms with their loss by providing the much sought after answers regarding the actual cause of death.
“Once families have access to such information, the correct follow-up screening can take place which could confirm whether any other members are living with the same, hereditary conditions. Only then, can medical professionals take steps to ensure that similar, unnecessary deaths are prevented in the future.”
The grant comes as a result of two fund raising events in 2006, instigated by Simon Halliday (double grand slam winner and member of the team of 1991 World Cup Finalists) supported by the world of rugby and in memory of Howard and Sebastian English who both died playing the game.
Sebastian (aged just 15) died 10 years after his father because his family were unaware he had a genetic condition, highlighting the importance of a correct pathology diagnosis for appropriate family referral and screening.
The launch marks the 3rd anniversary of “Chapter 8” of the National Service Framework for Coronary Heart Disease (Arrhythmias and Sudden Cardiac Death).
Chief Executive and founder of the charity, Alison Cox MBE, says; “For years, we have been frustrated by the time it takes for families to get answers about their tragedy – which happens without warning or explanation.
“Coroners sometimes do not have the funds or know how to access a service where they can refer complex cases to an expert pathologist, meaning that many deaths are simply recorded as unascertained or, incorrectly, as an accident such as epilepsy, asthma or drowning.
“This is unacceptable for grieving families and leaves surviving relatives at risk of further tragedies as these are genetic conditions and other family members need to be screened.
“A fast track service accessing expertise, which also funds the coroner’s costs of this vital investigation, is long overdue.”
CRY will be uniquely funding referrals from coroners to the new laboratories – and it is believed to be the first time that the Coroners service has received such a grant.
The CRYCCP will also allow Dr Sheppard and her team to carry out vital, ongoing research into the pathology of the condition, leading to a greater understanding and awareness of the syndromes that can cause sudden cardiac death in the young.
Michael Burgess, HM Coroner for Surrey and Coroner of the Queens Household [left] spoke at the launch. Other speakers included CRY Patron Sir Clive Woodward OBE, Professor Tony Newman Taylor, and Kevan Jones MP.
Professor Roger Boyle CBE, national clinical director for heart disease and stroke, was unable to attend the event in person, but sent the following statement of support which was read out:
“I am delighted to give my support to the Cardiac Risk in the Young Centre for Cardiac Pathology at the Royal Brompton Hospital. I have had the pleasure of working with Alison and her colleagues at CRY, and Mary Sheppard, for many years now and have always admired their professionalism and dedication. But what has really impressed me, as it has many others, is the sensitivity and understanding they show in an area that can, and does, devastate people’s lives.
The CRY Centre for Cardiac Pathology brings together these extraordinary people and these rare qualities. The Centre will build on the good work already done to understand these complex familial conditions, and through this help ensure that the right information, advice, care, treatment and support are offered to those that need it. I wish the Centre my very best wishes for the future.”