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Last Updated: Monday, 4 June 2007, 20:08 GMT 21:08 UK
Killer heart condition 'ignored'
By Michael Buchanan
BBC News

Robert Lancaster
Robert Lancaster died on a family holiday
The government has been accused of ignoring a condition that kills hundreds of young people each year.

Sudden Arrhythmic Death Syndrome (SADS) is responsible for the deaths of approximately 500 people under the age of 35 each year in the UK.

The syndrome, which causes the electrical circuitry of the heart to fail, is preventable and treatable.

However, the government rejected criticism it was doing nothing to cut SADS deaths.

Being cynical nothing much has changed
Professor Bill McKenna
Heart Hospital in London

In 2005, the Department for Health issued guidelines on how to tackle sudden cardiac death.

But since then said Michael Burgess, the coroner for Surrey who was involved in drawing up the guidance, nothing much has happened.

He said: "I think we all hoped and expected that the government would accept the findings of the people around the table.

"If we can identify heart disease early on, then our expectation and hope was that there could be a reduction in premature deaths, and equally that would mean an economic benefit to society as a whole.

"So the downside might be spending some new money now but the upside would be a much better health for this particular group of people who otherwise might die prematurely."

Many cases genetic

Coroners play a crucial role in preventing sudden cardiac deaths, as 50% of cases are genetic.

If a young person dies suddenly, the coroner needs to have the resources to identify the cause of death as sudden arrhythmic failure in order for other family members to be tested and treated if they are found to have the faulty gene.

But there is no structure in place to deal with the syndrome properly, said Professor Bill McKenna, a cardiologist at the Heart Hospital in London.

"Do we set up specialised clinic? Do we have the funding of expert pathologist to evaluate the hearts?

"Do we have a process in hand to ensure that when someone young dies the information is neither buried or cremated?

"And do we have a system in place to support maximally the family? I don't think we have any of those things in place, so being cynical nothing much has changed except expectations (since the NSF was published)."

New specialist network

The government has rejected that criticism.

If you are identified with this condition you must move quickly because its an aggressive condition
Alison Cox
Cardiac Risk in the Young

Health Minister Rosie Winterton said services were being improved.

"We now have something like nine specialist centres who do deal with this condition," she said.

"We've worked very closely with the Coroners' Society and the Royal College of Pathologists in how to raise awareness of the condition and make sure that if somebody in a family does die of this that other family members are given the support necessary."

The Department of Health said in a statement coroners could now seek advice from a recently established network of specialist pathologists - and a blueprint for dealing with inherited cardiac conditions had been published.

But others believe that more action is needed now if these deaths are to be avoided.

The charity CRY (Cardiac Risk in the Young) has funded a pathology service at the Royal Brompton Hospital in west London.

It will pay for coroners to ship the heart there and can arrange quick appointments with expert cardiologists.

"If you are identified with this condition you must move quickly because its an aggressive condition," said Alison Cox, chief executive of CRY.

"I have people saying I can see you in two to three months' time. That isn't any good, its got to be two to three weeks' time.

"All the experience the family has to go through in thinking they could have a child dead in a short period of time, you must produce a swift service and give the family confidence."

Family tragedy

It is a worry the family of Robert Lancaster are living with at the moment.

The 21-year-old collapsed and died on a family holiday while standing in a queue at a ski resort in Canada in March.

His father, James, says his son died "just as he was growing into a man."

In the weeks before his death, Robert had two medicals in preparation for taking up a new job. Nothing was found.

James and his wife are now going through a series of tests to see if they are carrying the faulty gene, prior to their two other sons and two grandsons being examined.

"In a strange way, (the tests) are giving us strength because once we found out what caused Robert to die, it made us focus on the living."


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