Adoption UK welcomes NICE’s (National Institute for Health and Care Excellence) latest quality standard published today (16^th March 2022) 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 body and 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, each individual has strengths and challenges and are affected 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, it is understood that 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, 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 by so many families. 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 surveyed were 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 known to be the most common neurodevelopmental condition.

Case study

 

Ruth Cliff has been unable to get an FASD assessment for her son, who she adopted 17 years ago, despite knowing he was exposed to alcohol in the womb. 

Ruth, who lives in Bedfordshire, England, said: “We were referred to a paediatrician who told me they didn’t have the expertise to assess for FASD and there was no one in our area who could do it either. I asked my local authority to fund an assessment via the Adoption Support Fund, but this was turned down. 

“Finding the right support for my son has completely taken over my life, so to have a specialist one-stop-shop like the hub in Scotland, where people truly understand FASD, would be life-changing.”