Families face delay of more than a year for vital heart screening
Several of the 246 people on a waiting list to find out if they have inherited a genetic fault, leaving them at risk of sudden cardiac death, are facing a delay of more than a year.
The backlog has built up at the Cardiovascular Risk in Younger Persons (CRY) centre, which has been forced to operate from a portacabin in Tallaght Hospital, Dublin.
The centre is now hoping a new capital investment project will provide the lifeline it needs to expand the service to meet the demand.
The charity, which was founded in 2008 and was entirely self-funded, also has around 1,500 people who have undergone free initial screening but need a follow-up.
Urgent cases are seen within weeks, but others can wait more than a year.
Pressures on the service also mean some people, who are seeking repeat screening after a relative has died of an undiagnosed heart defect, are waiting three to four years beyond their suggested follow-up.
Tommy Fegan, from Armagh, the charity's new chairman, who lost his son Kevin (24) to sudden cardiac death eight years ago (see Case Study), said between 60 to 80 young people die from sudden cardiac death annually.
Most cardiac arrests in young people stem from either genetic abnormalities in the heart muscle, cardiomyopathies, or abnormalities of the heart's electrical activity.
"The CRY centre provides testing to help other members of a family which has lost a young person to sudden cardiac death to find out if they have also an inherited risk which they are unaware of," said Mr Fegan.
"My family were found in screening to not share the same genetic risk as my son, but we must return for follow-up every few years."
Relatives of anyone who has died suddenly after a cardiac arrest need to be evaluated for signs of any relevant heart condition, as they could be at risk of a similar event, he explained. Another vital part of the work is counselling.
He said they are now pinning their hopes on making inroads into the list as a result of a €1.2m capital investment between the charity and the board of Tallaght Hospital.
It will be able to leave the portacabin and move into a large, purpose-built modern outpatient facility within 50 metres of the hospital's entrance. Construction is due to start next month and the clinic should be open by June.