Nic Dakin – 2015 Parliamentary Question to the Department of Health
The below Parliamentary question was asked by Nic Dakin on 2015-10-09.
To ask the Secretary of State for Health, what steps he is taking to ensure earlier diagnosis of congenital diaphragmatic hernia in babies and young children; and if he will make a statement.
Ben Gummer
The UK National Screening Committee currently recommends antenatal screening for congenital diaphragmatic hernia (CDH) as part of the Fetal Anomaly Screening Programme. CDH is primarily detected through the fetal anomaly ultrasound which is carried out between 18 weeks and 21 weeks of pregnancy.
Research from around the world has shown that with current screening techniques only around 70% of cases of CDH can be diagnosed before birth and that those not diagnosed before delivery tend to be less severe and have better outcomes. The fetal anomaly screening programme in England continues to monitor the quality of the antenatal screening process for all such anomalies.
A recent confidential enquiry focussed on CDH and a report of the findings was published in December 2014 by MBRRACE-UK on behalf of NHS England. This report considered the care provided for CDH cases diagnosed before and after birth, and considered all aspects of the care pathway following review of a sample of cases drawn from across the United Kingdom. The report highlighted certain aspects of practice that needed improvement, including the lack of evidence-based guidance for care. It recommended that consensus guidance is needed on the optimal management for the care and treatment for babies diagnosed with CDH and the management of late termination of affected pregnancies. It also flagged the inconsistent information provided to families which sometimes led to misunderstanding; for example the extent to which, with current technology, it is possible to diagnose CDH cases antenatally.
A new neonatal surgical service specification is currently under development which should, once approved, lead to greater accountability and clearer practice in this area.
