FASD Hub Scotland Birthday Conference

In 2019 Adoption UK in Scotland and a group of interested researchers, policy makers and experts by experience came together. They shared their knowledge, a drive to push FASD up the health agenda and a desire to develop support for those with FASD and their families. Some money was provided by the Scottish government and the FASD Hub Scotland was born. 

To celebrate this milestone, the FASD Hub Scotland hosted a special birthday conference in Edinburgh on 6 November. It was an opportunity to look back at the progress made over that time and ahead at the work still to do. 

Minister for Social Care, Mental Wellbeing and Sport Maree Todd MSP thanked the hub for the support it gives to families across Scotland. She stated the commitment of the Scottish government to focus on prevention through education and awareness and to improve the outcomes and opportunities for those with FASD. 

An animation made by a group of young people with FASD about their experiences of education was premiered. They spoke about importance of having adults in school who understand and who provide support, especially through times of change. The group addressed the audience after the showing and spoke about what they want to see: ‘Support needs to be lifelong and whenever we need it,’ was their message. 

Professor Raja Mukherjee MBE is a consultant psychiatrist for Surrey and Border’s Partnership NHS Foundation Trust and runs the only specialist FASD clinic in the NHS. He spoke about the prevalence of FASD in the UK (between 2% and 4% of the general population and as high as 33% amongst those in the care system) which means it is the most commonly occurring neurodevelopmental condition. Despite that there is widespread lack of knowledge, awareness, health provision and support as well as a lack of public awareness and education around prevention. Supporting those with the condition requires much greater awareness and knowledge amongst the medical profession as well as clear medical pathways. He called for language and practice to move away from a deficit model towards a strength-based approach. 

Dr David Junior Gilbert from the University of Salford is pursuing research to explore factors that pre-dispose the FASD population to have encounters with the criminal justice system. In the UK, those with FASD are more that 19 times more likely to be incarcerated than the general population. He has conducted studies into suggestibility, poor memory and confabulation and found that individuals with FASD are more likely to struggle with each, particularly when put under stress and in response to negative feedback. His findings have significant ramifications for the conduct of police interviews and court appearances. 

The final session was a panel discussion with Dr Jennifer Shields, Miranda Eodanable, Dr Patricia Jackson, Carol Hunter and Emily Frith. Each member spoke clearly about the need to grow public understanding of FASD and stamp out the stigma associated with it. They called for a national strategy for FASD in every UK nation, a shift in the language used about FASD towards neurodiversity, and for alcohol recording during pregnancy to be normalised.  

Professor Moira Plant, Emeritus Professor of Alcohol Studies at the University of the West of England is a researcher with over 40 years’ experience in alcohol in pregnancy chaired the event. She was present at that first speculative conference five years ago and supports the academic work of Professor Mukherjee who in turn supports Dr David Junior Gilbert’s research. She reflected on the past five years and closed the day with a call for equity, and not equality. Equity for those with FASD is about giving timely access to diagnosis and support, growing a widespread understanding of the condition across health, education and the general population and enabling those living with FASD to live full and rich lives.  

We would like to thank everyone who came to the conference, who took part, helped and supported it. To find out more about the work of the FASD Hub and to access free resources please visit our FASD Hub pages.