NICE

Key findings:

• The majority of NHS Integrated Care Boards and NHS Trusts are missing a golden opportunity to protect baby’s brains and futures with their slow, non-strategic and uncoordinated responses to the 2022 NICE Quality Standard 204 on Fetal Alcohol Spectrum Disorder (FASD). NICE QS 204 is in effect in England and Wales and calls for improvements in care regarding discussions about risks of alcohol in pregnancy during antenatal visits and recognition, diagnosis and support of those with FASD.
• While there are pockets of hope and encouraging progress, more broadly there is systemic confusion and a lack of coordination and commissioning across the NHS.
• Nearly 53% of Integrated Care Boards (ICBs) and 56% of NHS Trusts (not including the 11 specialist ambulance trusts) that replied by the statutory deadline to National FASD’s Freedom of Information requests are not taking action to meet the needs of this vulnerable population with FASD and to prevent alcohol-exposed pregnancies. In Wales all the health boards that responded are taking at least partial action.
• There are unclear lines of responsibility between ICBs/ Health Boards and Trusts, as well as within Trusts between different services.
• The vast majority of English ICBs that replied by the statutory deadline are not commissioning for diagnosis and management of care for children (70%), young people (73%), and adults (87%) and the majority of Welsh Health Boards have not commissioned services for diagnosis and management of people for children (67%), young people (67%) and adults (83%). Responses indicate the rest of the NICE QS 204 suggestions for commissioners are not being followed.
• There is a nearly universal failure to track improvements in services over time using NICE indicators.
• Training across the workforce as called for by NICE is not happening in many areas.
• Local pathways are unclear and under resourced. Many responses indicate that local diagnosis is not available.
• Appendices include the questions asked and the responses received and link to the full responses to help spur creative thinking from leaders in different areas.