Campaigners seek action to prevent sudden heart deaths among young

Cardiac arrest takes lives of 400 under-35s a year. Many doctors unaware of genetic conditions

Eight young people die without warning every week from existing heart conditions, many of which could be prevented by screening programmes and better advice from doctors, the campaigning group Cardiac Risk in the Young said yesterday.

Some teenage victims of sudden cardiac death will have been to a doctor complaining of dizziness of breathlessness but instead of having tests are told they are suffering panic attacks or asked whether they are experimenting with taking drugs, said Alison Cox, of Cardiac Risk in the Young (CRY).

CRY yesterday published evidence which suggests the actual rate of sudden cardiac deaths could be much higher, and questions whether the NHS is making enough progress in tackling the problem. Sudden cardiac death is an umbrella term for at least eight largely genetic heart conditions which cause 400 people under 35 to die each year. The conditions include heart abnormalities and problems with the regulation of heartbeats.

A year ago the government told primary care trusts to implement better referral programmes for people suspected of suffering from such heart conditions. CRY said this should ensure doctors do not misdiagnose young people suffering from some early warning signs. It would also compel them to refer the families of victims for screening.

CRY research yesterday suggested that of 36 PCTs questioned only one had so far set up a strategy to deal with the problem. The Department of Health stressed trusts had been given five years to complete the task and many were making progress but Mrs Cox said the deaths were too regular not to prioritise.

"Yes we're impatient. There are at least 400 more people dead since last year, that's 2,000 in five year's time. Alarm bells should be ringing," she said.

Some 30% of 1,000 people questioned in a poll by Access Omnibus Surveys for CRY reported they knew a young victim of sudden cardiac death. CRY said this suggested that the estimate of 400 deaths a year is conservative. Some of the conditions are difficult to diagnose at autopsy and natural causes are often recorded as cause of death. Other people might suffer an accident as a consequence of their heart stopping which is recorded as a cause of death.

CRY is calling for screening to identify young people at risk when they have their BCG Vaccinations at 14.

The Department of Health spokeswoman said: "We are committed to reducing mortality from this condition and have already begun to engage with the 32 national cardiac networks and the voluntary organisations to agree and take forward a shared agenda."

FAQ Hidden Killer

What is sudden cardiac death?

Dying very suddenly from one of a group of hidden heart conditions before the age of 35. Symptoms include dizziness or fainting, often misdiagnosed as epilepsy or panic attacks.

Who can it affect?

Anyone, although most of the conditions are genetically linked.

How do you tell whether you might be affected?

Very difficult. There are often no symptoms.

Are there treatments?

Some people might require drugs, others minor corrective surgery. People will probably be advised to do less strenuous exercise.