CYPRUS is in desperate need of a centre to care for patients with congential heart disease or one in every four sufferers could die, experts said yesterday.
Congenital Heart Disease (CHD) is the most common birth abnormality, affecting one in every 100 births.
In the past only 15 per cent of children born with CHD would survive but thanks to medical advances in the 20th century 90 per cent now live to adulthood.
However his means countries need to reconsider their medical facilities to deal with the problems encountered by CHD sufferers throughout the course of their lives, experts say.
The initiative and pressure to establish these facilities in Cyprus is coming from the patients themselves.
“There are no services for this new group of adults. There is not s single service for these people, including those who don’t pay, within your hospital system,” said Jane Somerville, a Professor of Cardiology based in Harley Street.
Somerville is one of the experts invited to speak at the first Pancyprian conference of congenital heart disease sufferers, which opens in Limassol today focusing on the situation in Cyprus with regards to CHD care.
“It is the patient who needs the services. One in four of the deaths in the severe group will die due to a management mistake which nobody bothers to look for, Somerville added.
Amy Verstappen, who was born with CHD herself and heads the American Congenital Heart Association, made it clear that people born with CHD need care their entire lives. “I am sure we all agree that the aim was not merely to make sure these children survived to age 18,” she said.
The current situation in Cyprus is that, until a patient reaches the age of 18, he is cared for by a paedocardiologist, and thereafter by a cardiologist. Operations, however, are ‘outsourced’ meaning that patients are sent abroad to undergo the necessary procedures.
“It is a bad quality and very expensive way to do it, sending patients abroad, which is also difficult for the patient,” said Dr Spyridon Rammos, a paedocardiologist based in Athens and Germany who was also invited to speak at the conference.
He emphasised that the standard of care available in Cypriot hospitals was generally of a high standard and that “The Cypriot state has done everything possible to provide the best care possible, much better than that provided in many states”.
Rammos recommended however that, relative to the size of the population in Cyprus, a specialised centre should be set up, ideally with ten dedicated cardiologists and two cardiologists specialising in the adult dimension of the disease.
Katerina Papadopoulos, the President of the Cyprus Adult Congenital Heart Defects Association said of the development of such a centre: “At some point, deadlines have to be imposed and a strategic plan developed to provide the best service possible and not just spasmodic responses to the problem”.
Myrto Azina-Chronides, medical officer with the Health Ministry, confirmed that the government was open to the idea and would try to develop just such a centre. “We will try to do this, insofar as we can,” she said.
The next step in the process would be the development in Cyprus of a dedicated specialty CHD department, perhaps within the University’s medical faculty. This is one of the main topics which will be discussed at the conference.
Somerville, known as the international doyenne on CHD policy and governmental responses, said of such centres: “America is a disaster in this respect in my view. There are 54 centres there and only nine would pass quality reviews. So don’t think you’re alone, you’re not, you’re just disorganised”.
