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Last Updated: Friday, 12 March, 2004, 16:33 GMT
Sudden death disorder targeted
Marc Vivien-Foe
Footballer Marc Vivien-Foe died from SADS
An initiative to tackle sudden adult death syndrome has been announced by the government.

The condition claims the lives of up to 400 apparently healthy young adults every year.

A new body will be set up to raise awareness of the condition and advise the Department of Health on future policy.

The move has been welcomed by campaigners urging a better system of diagnosis and treatment.

A new system to improve services for people with conditions like irregular heartbeats were announced by the Public Health Minister Melanie Johnson.

The group will be chaired by the National Clinical Director for Heart Disease, Dr Roger Boyle.

It's vital that we attempt to understand this condition further
Melanie Johnson, Public Health Minister
Voluntary and professional organisations including Cardiac Risk in the Young (Cry) and the British Cardiac Society will be invited to join.

Patients and families of patients will also have a strong voice in the work.

Around 700,000 people in the UK suffer from arrhythmia - a disturbance in the heart's rhythm - where severity can range from a minor health inconvenience to a fatal rhythm disturbance.

Ms Johnson said: "It is devastating for families when a young, apparently healthy person dies suddenly without warning.

"The majority of people with the underlying conditions do not have any symptoms for all or most of their life. However, the condition can lead to sudden and unexpected death, often in early adulthood.

"It's vital that we attempt to understand this condition further.

"The new group that I'm announcing today will help both raise awareness and drive future policy."

Far too many cases are slipping through the net undiagnosed, misdiagnosed, or diagnosed but not treated
Dari Taylor, Labour MP
The announcement came during a debate on the Cardiac Risk in the Young (Screening) Bill, opened by Labour's Dari Taylor.

It aimed to ensure anyone showing symptoms of certain cardiac diseases or who had a family history of them would be referred to a specialist and would have introduced screening for relatives of anyone under 35 who died of such conditions.

Ms Johnson praised Mrs Taylor's efforts and those of Cry.

She said: "I would like to pay tribute to the efforts of organisations like Cry, the British Cardiac Society and Dari Taylor MP who have worked tirelessly to raise awareness of the issue."

Preventable deaths

She said it could lead to a new National Service Framework (NSF) chapter setting out the standards and models of care for such conditions.

Mrs Taylor withdrew the Bill after the offer to set up the advisory group and described the announcement as "incredibly positive".

Welcoming the move, Mrs Taylor MP said: "I am delighted that the substance of my Bill has been adopted by the Department of Health, and we will see new guidelines and standards to prevent these terrible and unnecessary deaths.

"We know from research and experience that we can prevent these deaths - but now we need to put that knowledge to work.

"Far too many cases are slipping through the net undiagnosed, misdiagnosed, or diagnosed but not treated."

The most common causes of arrhythmia include heart disease, coronary artery disease, heart valve disorders and congenital anatomical heart defects.

Symptoms a patient with arrhythmia might experience include palpitations, dizziness and blackouts or they may occur only as a sudden adult death.

People who will benefit from the work include:

  • those at risk of sudden cardiac death - an estimated one in 500 young adults with hypertrophic and dilated cardiomyopathies
  • an estimated 112,000 people with disorders of the electrical conduction system within the heart, such as Long QT syndrome or Wolff-Parkinson-White syndrome
  • those requiring pacemakers for slow heart rates.

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