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New labs 'promise' answers for hundreds of bereaved families

 

7th March 2008

Listen to / read speeches from this event

 

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 (Friday 7 March, 5pm)

 

It is estimated that around 8 young (ie 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 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.

Left to right: Rupert Hunter, Stephanie Hunter and CRY Patron Simon Halliday.  Their fundraising efforts led to the creation of the CRY Centre for Cardiac Pathology.

 

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 Mary Sheppard

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.”  

Alison Cox MBE, Chief Executive of CRY

 

Michael Burgess

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, H.M. Coroner for Surrey and Coroner of the Queens Household will also be speaking at the event and there will be opportunities for one-to-one interviews with all speakers and other families.

 

For those who are interested, a guided tour of the laboratory will also be conducted, including filming opportunities.

 

ENDS

 

 

Click here for 'Raising Awareness' articles highlighting the importance of the CRY Centre for Cardiac Pathology

 

Follow these links for photos of:    Speakers    CRY Patrons    Various Guests

 

 

Click below to hear the speeches made at the launch

(or click on 'Transcript' to open a transcribed version of the speech in a Word document)*

  * with thanks to Mel at The Transcription Company UK (www.thetranscription.co.uk) for producing these transcripts

 

 

For more information, please contact Jo Hudson or Tracey Thompson on 020 8786 3860 / 0770 948 7959 or email jo.hudson@trinitypr.co.uk

 

 

Notes to editors:

 

CRY was founded in May 1995 to raise awareness of Sudden Arrhythmia Death Syndrome (SADS). As well as campaigning and lobbying, CRY also provide a subsidised cardiac screening programme for young people (35 and under), and provide counselling support to bereaved families and individuals who may be diagnosed.

 

 

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