HEALTH – CARDIAC RISK IN THE YOUNG – 12 March 2004

[The Parliamentary Under-Secretary of State for Health (Miss Melanie Johnson): The UK National Screening Committee advises the Government about all aspects of screening policy and to inform its proposals it draws on the latest research and the skills of a specially convened multi-disciplinary expert group. … Its child health sub-group has advised that there is currently insufficient evidence to introduce a national screening programme for hypertrophic cardiomyopathy, the most common cause of SAD, either for the whole population or for specific sub-groups. The child health sub-group advises on all aspects of childhood screening programmes, and its advice in this case is that there should not be a national screening programme until further evidence is available.]

Dr Julian Lewis: Is one of the sub-groups that is being considered that of the relatives of children and young people who have already died? It is inconceivable that that sub-group would not benefit from a screening programme. How many representations have been received from families wanting to know, as opposed to those from families not wanting to know about the dangers to their children?

[Miss Johnson: We have already heard some anecdotal evidence about families' wishes, which I agree cuts in a different direction from the one in which the screening committee has gone. … In response to the hon. Member for New Forest, East (Dr Lewis), doctors should investigate all the close relatives, and especially siblings, of those who have suffered sudden cardiac death. That would usually include referral for a cardiologist's opinion. The practice is based on the genetic linkage of hypertrophic cardiomyopathy and some cardiac rhythm disturbances that may be implicated in sudden death. In addition, there needs to be good evidence that early intervention can improve the prognosis – we must be able not only to identify individuals at risk but to offer them some help when we have done so.]