Hackney Council Public Health: Supporting children and families impacted by Foetal Alcohol Spectrum Disorders (FASD)

The team’s approach has spurred a number of different projects to upskill staff and embed competency in FASD identification, assessment and support across departments and services working with expectant parents, children and families. These include improved messaging in schools’ PSHE curriculum, pregnancy planning services and antenatal care and to prevent alcohol-exposed pregnancies; work with children’s services to improve skills in identifying and supporting children and families with diagnosed or suspected FASD; and support for schools to embed FASD awareness and tailored interventions in educational settings.

The work has resulted in new, system-wide attention for FASD in Hackney. Partners have begun to reflect on how FASD manifests in different presentations across service provision and the roles they play in both preventing prenatal alcohol exposure and, delivering the best support to children and families impacted by FASD.

Only in recent years has national guidance around alcohol consumption during pregnancy - and FASD - begun to shift. This as a result of increased research, coupled with advocacy from parents and families, which caused a shift in national guidance which, 2016, saw the Chief Medical Officer's updated guidance state firmly, that there is no safe level of alcohol consumption during pregnancy. Following this, the Scottish Intercollegiate Guidelines Network (SIGN) developed the first-ever FASD diagnostic criteria in the UK and advocated that FASD be investigated in all cases of neurodivergence. This was then adopted in England in 2022 by the National Institute for Health and Care Excellence (NICE) along with criteria recommending that all expectant mothers be asked routinely about alcohol consumption during their gestational period and be advised about the effects of prenatal alcohol exposure.

Hackney Council then took up the mantle in 2023 when then council speaker, Councillor Anya Sizer, held a public event in Hackney as part of International FASD Awareness Day. The response from this event prompted the Public Health team to undertake a gap analysis to investigate how the local system of maternity, children, and family services compared to NICE Quality Standards for FASD. Unfortunately, yet unsurprisingly, Hackney services did not meet any of the five statements of this quality standard, setting off a suite of projects to strengthen systems of prevention and support across partners.

Following the findings from the gap analysis, the Public Health team worked with services across Hackney to improve practice and increase competence for FASD.

Working with Homerton University Hospital Midwives team, Public Health helped complete an audit of pregnancies going back the last four years to assess the fidelity and accuracy of information on prenatal alcohol exposure. This audit led to a complete revision of the screening tools used at antenatal booking appointments and routine antenatal check-ins to ensure that accurate information on alcohol consumption is collected across all trimesters of pregnancy and can be used as future evidence when assessing for FASD.

The Public Health team then worked with leads from Children’s Social Care to deliver bespoke training for professionals supporting Looked After Children (LAC) – a group disproportionately impacted by FASD. This training supported LAC professionals to incorporate FASD querying and assessment into protocols for professionals when supporting looked after children. Expanding on this, Public Health delivered further trainings for the staff of the new Children & Family Hubs in the local authority area, incorporating a series of ‘action research projects’ in which staff from each hub developed specific protocols, materials, and support templates to embed competencies into their day-to-day work with children and families.

As a result of system-wide training and learning, professionals have begun investigating FASD as a potential underlying factor for children exhibiting behavioural symptoms that are inconsistent with other, better known behavioural conditions. Staff have a greater understanding of the impact of alcohol on developing foetuses and are better able to advise families seeking support for unexplained behavioural needs in their children on the assessment process. While diagnostic services for FASD are still limited locally, and waiting times for assessments at the national centre are many months, local teams have created processes to develop support plans for children in lieu of diagnosis that provides direction to professionals across education, and children and family services on appropriate interventions for FASD.

Furthermore, work with midwives and maternity services has greatly improved the accuracy of recorded information on alcohol consumption during pregnancy. This has supported midwives in having more meaningful, open conversations with expectant mothers and parents about the importance of abstinence during pregnancy.

Work is ongoing to embed a local diagnostic pathway for FASD as part of the community paediatrics neurodevelopmental pathway, with the hope of reducing overall waiting times by ensuring children are offered the right assessments for presenting needs. Overall, this system–wide project has finally brought together partners across health, children and family services, social care, education, and substance use services to develop cross-service understanding and partnership, working to support children and families impacted by FASD.

While the original support for the gap analysis came from Public Health, this project required full buy-in from a range of partners spanning health, education, and social care. Each partner plays a unique role in supporting FASD prevention and care and so training and upskilling projects had to be tailored to each services’ needs. It was also important that heads of critical services–including maternity services, community paediatrics, education, and children’s social care–had routine high-level strategy meetings to ensure that staff training and protocol development reinforced the system-wide approach. This helped address initial concerns that identification and diagnosis of FASD would not be followed with appropriate support.

Overall, Hackney’s investment in system-wide evolution and upskilling for FASD has laid the foundation to both reduce alcohol consumption during pregnancy, and also set children and families impacted by FASD up for success with appropriate support from a competent workforce.