We understand that 7 further babies in our region were missed just like Molly for the 2020/23 period which spanned Molly’s pregnancy and birth. Only 3 families were able to secure an antenatal diagnosis. During this period the PPD detection rate in our region for Molly’s heart condition stood at just 27.3% - significantly below the national average. No review or possible learning from these missed scans in our region is possible. No trusts in our region retain the FASP fetal heart views during routine screening at the 20 week scan.
The NICOR audits collect data for babies diagnosed antenatally with a cardiac defect who then undergo an intervention in the first year of life, described as Procedures with Prenatal Diagnosis (PPD).
The National fetal cardiology group recommendation for sonographers is to: "Achieve diagnosis PPD rate of at least 75% for all abnormalities where an intervention is undertaken in the first year of life".
We understand the NICOR statistics do not represent the ‘true’ antenatal detection rates, since they exclude spontaneous deaths in pregnancy, termination of pregnancy, non-intervention after birth and unrecognised deaths in the community.
However, this graph and the benchmarks for recommended PPD rates, show the current disparity between regions. We’ve highlighted our region in the graph which is a clear outlier. We feel records should be kept by all trusts during routine screening. We feel there needs to be consistency and a uniform approach during pregnancy screening. If trusts cannot retain video clips / cine loops, we firmly believe patients should be permitted to record on their own devices. There is recognised clinical value in retention of such records and around 10% of trusts in England are retaining clips / loops.
All regional PPD detection rates (categorised by Integrated Care System) for HLHS,TGA-IVS, TOF and CAVSD can be viewed here;
Through NHSE. we’re still trying to source data from the National Disease Registration Service and NICOR / National Cardiac Audit Programme. We’ve only been provided with sanitised and suppressed data so far following our FOI requests. We'd like to see what is held for each individual trust.
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