17 May 2019 Informal Roundtable on Forthcoming NICE Quality Standard on FASD
NOFAS-UK hosted an informal roundtable on the forthcoming NICE Quality Standard on FASD in the week following the announcement. The discussion was co-chaired by Dr Raja Mukherjee and Sandra Butcher. This took place in the margins of the launch of the Greater Manchester Alcohol Exposed Pregnancies Programme.
FASD Stakeholders: Future Policy Development on Issues Relating to Foetal Alcohol Spectrum Disorders (FASD)
- Martin Butcher, East Hertfordshire and Area FASD Support Network, introducing a statement on behalf of the FASD UK Alliance;
- Pip Williams, on behalf of the UK-EU Birth Mothers Network-FASD;
- Brian Roberts, a former virtual school head who discussed Looked After Children, FASD and education;
- Andy Jackson, adult with FASD
Main points raised by stakeholders included:
- There is an urgent need for Increased awareness, training, information and tracking across all NHS platforms on the full range of the FASD spectrum diagnoses and not just the 10% of those with FASD who have the facial features of Foetal Alcohol Syndrome.
- Prevention is key. Support for pregnant women should be framed in ways that help not only decrease the incidence of FASD but also support women in the post-natal by providing access to early diagnosis and support for a child who might have been affected.
- To avoid tragic consequences, it is critical to ensure those affected (including adults) have access to FASD diagnosis and related assessments. Looked after children and those who are adopted should all be assessed for FASD and particular attention should be paid to training all professionals in these fields.
- Appropriate support is required across the lifespan of those with FASD – it is a lifelong hidden disability arising from organic brain damage due to alcohol exposure in utero. Failure to provide this support can have – and is having – devastating impact. This point was poignantly underscored by contributions from adults with FASD. A strengths-based approach is needed.
- FASD should be recognised as the neurodevelopmental disability it is, so all people with FASD no matter what their IQ-level can access services and benefits that are open to others with autism and other neurodevelopmental disabilities.
- Continuing engagement with stakeholders and service users must be a part of finding the way forward.
22 UK adults with FASD shared additional insights for the 22 October 2018 meeting with Deputy Chief Medical Officer Gina Radford
Also available: Additional Insights from UK Adults with FASD