Final Report > Recommendations > Healthcare services and treatment for children with congenital heart disease

Healthcare services and treatment for children with congenital heart disease

192. National standards should be developed, as a matter of priority, for all aspects of the care and treatment of children with congenital heart disease (CHD). The standards should address diagnosis, surgical and other treatments, and continuing care. They should include standards for primary and social care, as well as for hospital care. The standards should also address the needs of those with CHD who grow into adulthood.
193. With regard to paediatric cardiac surgery, the standards should stipulate the minimum number of procedures which must be performed in a hospital over a given period of time in order to have the best opportunity of achieving good outcomes for children. PCS must not be undertaken in hospitals which do not meet the minimum number of procedures. Considerations of ease of access to a hospital should not be taken into account in determining whether PCS should be undertaken at that hospital.
194. With regard to those surgeons who undertake paediatric cardiac surgery, although not stipulating the number of operating sessions sufficient to maintain competence, it may be that four sessions a week should be the minimum number required. Agreement on this should be reached as a matter of urgency after appropriate consultation.
195. With regard to the very particular circumstances of open-heart surgery on very young children (including neo-nates and infants), we stipulate that the following standard should apply unless, within six months of the publication of this Report, this standard is varied by the DoH having taken the advice of relevant experts: there must, in any unit providing open-heart surgery on very young children, be two surgeons trained in paediatric surgery who must each undertake between 40 and 50 open-heart operations a year.
196. The national standards should stipulate that children with CHD who undergo any form of interventional procedure must be cared for in a paediatric environment. This means that all healthcare professionals who care for these children must be trained and qualified in paediatric care. It also means that children must be cared for in a setting with facilities and equipment designed for children. There must also be access on the same site as where any surgery is performed to a paediatric intensive care unit, supported by trained intensivists.
197. Surgical services for children with very rare congenital heart conditions, such as Truncus Arteriosus, or involving procedures undertaken very rarely, should only be performed in a maximum of two units, validated as such on the advice of experts. Such arrangements should be subject to periodic review.
198. An investigation should be conducted as a matter of urgency to ensure that PCS is not currently being carried out where the low volume of patients or other factors make it unsafe to perform such surgery.