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If you are encountering resistance for diagnosis or support from your doctors, local CCG or NHS Trust, you can help them understand that change is coming. NICE has released a Quality Standard on FASD.
This Quality Standard covers assessing and diagnosing Fetal Alcohol Spectrum Disorder (FASD) in children and young people. It also covers support during pregnancy to prevent FASD. It describes high-quality care in priority areas for improvement.
While Quality Standards aren’t mandatory, CCGs and the new Integrated Care Systems (ICS) are supposed to ‘have regard’ for them and demonstrate how they are improving quality of care.
The NICE Quality Standard on FASD is based on the Scottish SIGN 156 Guideline on Children and Young People Exposed Prenatally to Alcohol.
The NICE Quality Standard is available here.
Statement 1 Pregnant women are given advice throughout pregnancy not to drink alcohol.
Statement 2 Pregnant women are asked about their alcohol use throughout their pregnancy and this is recorded.
Statement 3 Children and young people with probable prenatal alcohol exposure and significant physical, developmental or behavioural difficulties are referred for assessment.
Statement 4 Children and young people with confirmed prenatal alcohol exposure or all 3 facial features associated with prenatal alcohol exposure have a neurodevelopmental assessment if there are clinical concerns.
Statement 5 Children and young people with a diagnosis of fetal alcohol spectrum disorder (FASD) have a management plan to address their needs.
This new report is based on a series of roundtables with more than 60 leading experts, clinicians, policy makers, commissioners and people with lived experience. It provides practical suggestions on how to move forward.
Register here to view the live stream of a special event from London releasing the report, 21 March 11.30 – 13:00.
Jan Griffin is a member of the National FASD Experts Committee and Rossi is a member of our Adults and Young Adults with FASD Advisory Committee. Together they are “Birth Mum and Son” and have lots of great activities planned including the RossiLici Roadtrip UK tour in summer 2023 with another family. More info about that is here. Note: We reject the BPAS characterisation of the risks of alcohol in pregnancy and remind people the NICE Quality Standard says there is no known safe amount of alcohol in pregnancy.
National FASD hosted an informal roundtable on the forthcoming NICE Quality Standard on FASD in the week following the announcement in May 2019. The discussion was co-chaired by Dr Raja Mukherjee and Sandra Butcher. This took place in the margins of the launch of the Greater Manchester Alcohol Exposed Pregnancies Programme.