Update 4; 2024 National Congenital Heart Disease Audit is published
On 10th April 2024 NICOR published it’s further annual report;
We've summarised what we feel are the key points from the 2024 National Congenital Heart Disease Audit;
“This report is of value to a wide range of stakeholders but importantly it allows patients and their relatives to better understand CHD care and its outcomes in the UK”.
“The goal of CHD services is to make a diagnosis as early as possible, ideally before birth (referred to as antenatal diagnosis), and provide excellent continuity of care as patients progress through childhood and into adulthood.”
“Over the last six years, the rate of antenatal diagnosis has plateaued at just over 50%”
“There is considerable variability on antenatal detection rates for these patients within the UK”
[Between 2020 and 2023] “Considerable variation can be seen in the three year prenatal diagnosis rate, from 24% for the Cornwall and the Isles of Scilly Health and Social Care Partnership to 65% in South West London Health and Care Partnership. For 2022/23, the highest rate of 72% was achieved by the Leicester, Leicestershire and Rutland ICB”.
Detection rates of some of the most serious conditions have actually declined;
“For those requiring a procedure in the first year, the prenatal detection of HLHS [Hypoplastic left heart syndrome] was highest in 2022/23 at 95%. There was also an improvement in diagnosis of complete AVSD [Atrio-ventricular septal defect]. Conversely, prenatal diagnostic rates for Fallot's tetralogy and TGA-IVS [Transposition of the great arteries with an intact intraventricular septum] both deteriorated”.
Recommendations;
“Hospitals undertaking antenatal screening to diagnose conditions requiring intervention in the first year should improve their success rates by working with congenital heart disease (CHD) networks to review staffing, infrastructure, education and training”.
The last three reports can be accessed in the below links;
https://www.nicor.org.uk/publications/ncap/congenitial/2024-1/nchda-final-report-2022-23/?layout=default (2024 Summary report)
https://www.nicor.org.uk/publications/ncap/congenitial/10633-nicor-annual-summary-reports-nchda-domain-report-v7/?layout=default (2023 Summary report)
https://www.nicor.org.uk/national-cardiac-audit-programme/previous-reports/congenital-heart-disease-2/2022-2/nicor-nchda-2022-final/?layout=default (2022 Summary report)
Important update 15.05.24.
The above links for the 2024 and 2022 reports are still valid and are named as The Annual Summary Reports. Since publishing this petition the web location of the important 2023 Annual Summary Report appears to have been moved.
I have posted a web link again today to this important 2023 report. The link seems to have been amended since we published.