Improving Clinical Coding for Fetal Alcohol Spectrum Disorder (FASD)

Recognising the Hidden Disability of Fetal Alcohol Spectrum Disorder (FASD) in Electronic Patient Records

Fetal Alcohol Spectrum Disorder (FASD) remains vastly under-recorded in electronic patient records in the UK. Although an estimated 2-4% of children in the general UK population and up to 27% of children in care are affected by FASD, few have this diagnosis documented in their medical records. This lack of proper documentation can lead to significant challenges for individuals with FASD and missed opportunities for better care, research, and policy-making.

The University of Bristol, the University of Edinburgh, the National Clinic for FASD and the National Organisation for FASD have created a number of resources for General Practitioners within Primary Care to improve the accuracy of coding and raise awareness of the SNOMED CT codes as recommended by NICE.

In this video Dr Lou Millington, a GP in Sheffield and a Named GP for Children’s Safeguarding with South Yorkshire ICB explains why FASD coding is so important within Primary Care:

"Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental condition caused by exposure to alcohol in utero. Alcohol affects the developing brain and body and as well as lifelong cognitive, emotional and behavioural problems, around half will have ADHD. In addition FASD can cause over 400 conditions (including CNS, vision, hearing, heart, resp, GI, MSK and circulatory issues), with each person affected differently. It is more common than you think – more children are born with FASD than have autism, Spina bifida, Cerebral Palsy & Downs Syndrome combined. But it is known as a hidden disability because it is often undiagnosed or misdiagnosed." - Dr Lou Millington

The project is encouraging everyone in Primary Care to use the new SNOMED codes – either when they're made away of antenatal alcohol consumption or when someone is given a diagnosis by secondary care.

This can be done by admin as part of scanning/coding documents or by clinical staff when reviewing a child/mother/birthing parent. It is important to have a system in place whereby when antenatal alcohol exposure is disclosed during a pregnancy the information is transferred to the child’s notes upon birth.

The SNOMED CT codes as recommended by NICE:

1894471000000108 - Fetal Alcohol Spectrum Disorder (FASD) with sentinel facial features

1894461000000101 - Fetal Alcohol Spectrum Disorder (FASD) without sentinel facial features

2078801000000102 - At increased risk of FASD (Fetal alcohol spectrum disorder)

Links to further project information:

Click here for the University of Bristol project information site

Click here to download Dr Lou's presentation

Click here to download the project info-graphics and resources

Links to further resources:

Link to NICE Quality Standard 204

Link to FASD Health Needs Assessment (2021) DHSC

Link to FASD Network website