Adoption UK responds to NICE guidelines to improve diagnosis, assessment, and prevention of FASD

Adoption UK welcomes NICE’s (National Institute for Health and Care Excellence) latest quality standard which sets out how health and care services can improve the diagnosis, assessment, and prevention of fetal alcohol spectrum disorder (FASD).

There are thousands of children, young people, and adults with FASD living in the UK, many undiagnosed. FASD is a brain-based neurodevelopment condition resulting from an alcohol exposed pregnancy. FASD is the most common-known cause of neurodevelopmental disability in the UK.  A lifelong condition, it affects individuals differently.

In 2021, the UK’s first prevalence study from the University of Salford showed 2-4% of young people had FASD (a rate higher than autism). Across the general population these figures are thought to be higher (3.25-5%), and within specific vulnerable groups, such as those who are care experienced, this could be much higher. For many, and for too long, FASD has been unrecognised or misdiagnosed. The introduction of the NICE quality standards for FASD marks a significant step change in recognising the condition in England and Wales. 

NICE’s quality standard, which is published today, highlights five key areas for improvement:

• Pregnant women are given advice throughout pregnancy not to drink alcohol.
• Pregnant women are asked about their alcohol use throughout their pregnancy, and this is recorded.
• Children and young people with probable prenatal alcohol exposure and significant physical, developmental, or behavioural difficulties are referred for assessment.
• 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.
• Children and young people with a diagnosis of FASD have a management plan to address their needs.

The SIGN (Scottish Intercollegiate Guidelines Network) 156 Children and Young People Exposed Parentally to Alcohol Guidelines (2019) means children and young people in Scotland have a route to diagnosis. The new NICE Quality Standards on FASD has adopted the SIGN 156 Guidelines in respect of diagnosis.

Aliy Brown, FASD Hub Project Manager & Adoption UK FASD Lead, said: “The introduction of the NICE quality standards has been long awaited. Today is a time to pause and celebrate. Next, we need to make sure the professionals for whom the guidance is written fully understand how to use them. This is just the start of ensuring everyone with a history of prenatal alcohol exposure receives the support and understanding they so deserve and need throughout their lives.”

Adoption UK’s 2020 Adoption Barometer report revealed one-in-four adopted children are either diagnosed with, or suspected to have, FASD. More than half of families polled had waited two years or longer for a diagnosis, and more than three-quarters felt healthcare professionals lacked basic knowledge about the condition, even though FASD is more common than autism.