Barbara Ogston leads the FASD Hub Scotland, which is funded by the Scottish government and run by Adoption UK. She reflects back on the progress taking place in FASD diagnosis, understanding and support.

The FASD conference FASD in the UK: Building on 20 years of progress, held last week, was an opportunity to look back on the progress that has been made in that time. I’ve been part of the FASD community for 14 of those 20 years.

Back in 2018 Adoption UK in Scotland brought together parents, carers and professionals supporting people with FASD for a first of its kind event. Little did I know where that conference would lead, both to the development of FASD Hub Scotland and also to my own role in the project.

Change has often felt agonisingly slow. As well as unreliable prevalence figures, there weren’t any diagnostic pathways and awareness of the condition was poor amongst the medical profession and the general population. Those with FASD were poorly served on so many fronts.

Fetal Alcohol Spectrum Disorder (FASD) results from pre-birth exposure to alcohol and can impact those effected in many different ways. It wasn’t that long ago that alcohol was considered safe and even recommended for pregnant mothers to ‘build up their strength’. We know now that it passes through into the developing embryo and can cause life-long developmental issues.

The conference, organised by the FASD research team at Salford University, National FASD and the Greater Manchester NHS brought together many experts, researchers and groups, including the FASD Hub Scotland.

It was the first time the UK FASD community have come together since the covid lockdowns. One of my personal highlights was meeting so many people, many of whom I have only met virtually. Scotland was well represented. Prof Moira Plant, Dr Patricia Jackson, Dr Jennifer Shields and researcher Miranda Eodanable took part in the conference and were joined by attendees from other Scotland based FASD organisations and the Scottish Government. From a UK perspective, many members of the FASD UK Alliance were present as were parents, carers and people with FASD. The buzz was palpable and there were a lot of hugs going around!

There were presentations from professionals and researchers including Professor Raja Mukherjee, who has been a leader and encourager to many over the years. He shared a timeline of significant developments which demonstrated that progress has indeed been made, particularly in diagnosis. Dr Patricia Jackson gave an overview of the SIGN 156 guidelines which here in Scotland are so well known to us but are still fairly new elsewhere since their adoption under the NICE Quality Standards. There was a fascinating presentation from Dr Mike Suttie on the use of technology in recognising the FASD sentinel facial features which offered a glimpse into the future of FASD assessment.

Workshops included an overview of FASD education for the workforce, led by Dr Jennifer Shields and Dr Neil Aiton from the FAAST team. In Scotland, there is soon to be a post-graduate qualification in FASD which will be the first in the UK and only the second in the world. We heard updates on current FASD research from Miranda Eodanable and David Gilbert whom the FASD Hub have supported through the recruitment of participants. Here in Scotland, we have so much to be proud of - we have made some major contributions to diagnosis, support and research.

The FASD Alliance and National FASD brought the lived experience to the conference sharing the findings of a recent survey into care management plans, or to be precise, the absence of them for many families. The event saw the launch of the UK FASD Manifesto – the voice of those with FASD setting out how they should be treated and listened to. It was introduced by a group of young adults with FASD who shared with us a little of their own experiences. You can view the UK FASD Manifesto video here.

Has progress been made over the past 20 years? Yes, absolutely it has, however we are not there yet. There are still many barriers to diagnosis, too many people don’t know about FASD and too many families are not able to access the support they urgently need. Adoption UK, through FASD Hub Scotland and FASD Hub UK are ready to play a role in ensuring that all families and individuals affected by FASD, wherever they may be, can access the support they need.

To find out more about the information and support available through the FASD Hub UK visit FASD Hub UK | Adoption UK Charity