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Near Misses and Disasters in the Treatment of Grown-up Congenital Heart Patients

Cardiologists perceive congenital heart disease (CHD) as a complex subject, rarely encountered, with incomprehensible nomenclature that changes for reasons difficult to understand. Paediatricians have long accepted that children with CHD need the attention of a paediatric cardiologist, and the Department of Health for a time recognized the special needs of infants requiring cardiac surgery by supraregional designation and funding. The past 30 years therefore saw an increase in the number of children, once doomed, who survived to adolescence and adulthood. Unfortunately, the skills required for long-term care have not been fully appreciated by the medical profession. General practitioners find grown-up congenital heart (GUCH) patients too rare to worry about and the usual assumption is that they can be managed adequately by a local physician/cardiologist at the hospital with 'the contract'. Medical care for the group of GUCH patients is not yet as good as it should be; and this once small community grows annually through the successes of surgical treatment during infancy and childhood. There is now hope that the last complex lesion to receive dextrous surgical attentionnamely, the hypoplastic left heart will in 10 years' time become a GUCH. Unfortunately, adolescent and adult congenital heart patients are scattered like seeds in practices and hospitals, with a few special units (at the Royal Brompton, Newcastle, Cardiff, Southampton and Birmingham) struggling to provide a good service, exchanging information and scraping funds to manage the costly complex GUCH. It is no wonder there are disasters and errors in management.