Think positively about FASD - reflections from a paediatrician

Dr Patricia Jackson, a RCPCH Fellow based in Edinburgh, looks back on International Fetal Alcohol Spectrum Disorders Awareness Day, which was on 9 September. She shares, from a personal perspective, information gained on how paediatricians can become more aware of and make a diagnosis of FASD.

It is with enthusiasm that I share my thoughts provoked by this year's International FASD Awareness Day. This started in Canada on 09/09/1999, the date chosen to represent the nine months of gestation, and each year the FASD community around the world joins together to raise awareness of the importance of having an alcohol-free pregnancy.

I was fortunate this 9 September to join in The National Dialogue on International FASD day: FASD Conference 2021 organised by Sheffield Safeguarding Children Partnership. It was great to catch up around prevention, diagnosis and treatment for those affected prenatally by alcohol in the UK, and encouraging to see the progress that has been made since the publication of the clincial guideline from Scottish Intercollegiate Guidelines Network, SIGN 156 in January 2019.

As part of the event, Public Health England released their report: FASD Health Needs Assessment, confirming SIGN 156 as the guidance around which the NICE standards for FASD will be built. It's such great news that across the UK, Canada, New Zealand, and Australia, as well as other parts of the world, we are all working to the same criteria and aims for diagnosis and care. All clinicians are now encouraged to use the terminology FASD with or without sentinel facial features and follow a structured diagnostic process.

This will help hugely in the development of research work (promoted by The FAAST Team in Scotland) to improve the outcomes for those with FASD.

Supporting children and young people

It was great to hear positive stories at the FASD Conference 2021 from children and young people from all over the UK, who see their diagnosis as a first step to understanding why challenges exist in their lives. They shared how it helped those around them in education and employment situations to better adapt things and facilitate their success.

Scotland’s contribution came from the FASD Hub Scotland, a national tiered support service for all parents and carers of children and young people who have, or may have, been affected, by prenatal alcohol exposure. It provides information, advice, peer support, signposting and training for caregivers and professionals in education, social work and the charity/third sector. The Hub team can engage with families at the point that best suits them, and through their social media and website engage with families outside Scotland.

Learning about FASD and how to make the diagnosis

As paediatricians, we should feel confident to ask about alcohol just as we would ask about drugs, smoking or exposure to infectious diseases.

When it comes to FASD, learning is key. There are an increasing number of training opportunities available. Case studies for FASD have been included in our updated curriculum, RCPCH Progress+, which goes live in August 2023. FASD diagnosis will be an essential element for those training in neurodevelopment. Check out this website and make sure your contact preferences are up-to-date for eBulletins for upcoming workshops and educational opportunities.

I would highlight the importance of updating your knowledge. I'd encourage you to test and improve your knowledge by accessing the FASD eLearning module on the NES TURAS platform (please note that you will need to create a TURAS account to access this).

Think FASD for every child you see who has a neurodevelopmental delay, and always check that you know about maternal alcohol intake during pregnancy. Learn to be confident and relaxed about taking an alcohol history. As paediatricians, we should feel confident to ask about alcohol just as we would ask about drugs, smoking or exposure to infectious diseases.

Do we have the resources to make an FASD diagnosis?

The recently released eLearning module for GPs to increase FASD awareness will improve referrals to paediatricians but these are not new children. The recent launch of the National Neurodevelopmental Assessment Pathway in Scotland is a huge opportunity. It promotes the importance of integrated working among paediatricians, nurses, CAMHS colleagues and AHP (Allied Health Professionals) colleagues.

Prevention must be a big part of the story. FASD is the commonest preventable cause of neurodevelopmental disorder. The Drymester group from Birmingham spoke about their work with women of childbearing age pre-conception and during pregnancy to improve awareness of the risks of alcohol to the fetus and the importance of following the message of ‘No alcohol No risk’.

In Scotland, much work has already been done by health visitors and midwives to increase awareness and to ensure that history taking related to alcohol becomes a routine procedure and is done with care and without judgement.

But we need to reach women of childbearing age at the earliest opportunity, so it is exciting to see the start of a new research project in Scotland looking at the best way to achieve this. The Healthier Pregnancies, Better Lives project developed by The Queen's Nursing Institute Scotland will seek to identify how best to inform and advise women about planning a healthy pregnancy and centrally will ask them how they feel information could be best provided to them.

Awareness and education about FASD is of great importance as it will help to remove the stigma of FASD and allow us, as clinicians, to begin to think positively about FASD, giving this condition the attention it deserves.

My thanks go to Aliy Brown from FASD Hub, Dr Suzanne O’Rourke from FAAST, Dr Moray Nairn from HIS, Dr Jonathan Sher from QNIS and Fiona McKinlay from the Improving Health and Wellbeing, Children and Families Directorate at the Scottish Government for their contributions.

Dr Patricia D. Jackson OBE, FRCPCH, Honorary Fellow University of Edinburgh Department of Child Life and Health, Co-Chair SIGN 156 Guideline Group: Children and Young People exposed prenatally to alcohol