Policy

Deputy Chief Medical Officer Meets FASD Stakeholders

FASD Stakeholders: Future Policy Development on Issues Relating to Foetal Alcohol Spectrum Disorders (FASD)

Including presentations:

  • 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

UK Policy Makers’ Statements

This section links to official statements about FASD and alcohol in pregnancy provided by Government, along with other mentions in Parliament. This is a start – it is not yet complete and will be updated over time.

Continue reading

Parliamentary Roundtable

Our Forgotten Children:
Report from a roundtable discussion with FASD stakeholders, co-chaired by Professor Sheila the Baroness Hollins and Mr Bill Esterson, MP in the
Houses of Parliament on 23 May 2018

Our Forgotten Children: The Urgency of Aligning Policy with Guidance on the Effects of Antenatal Exposure to Alcohol (PDF)

KEY POINTS

1 – Government policy regarding Foetal Alcohol Spectrum Disorders (FASD) should be reviewed with urgency.
2 – Increased training on FASD is essential for achieving Government’s goals.
3 – There is a continuing need for prevalence studies of the full FASD spectrum, but this does not justify inaction regarding improved delivery of diagnosis and support.
4 – FASD should be linked with Government efforts to improve mental health – stakeholders should be engaged.
5 – Policy leverage points exist and should be further explored.
6- This is the beginning of a heightened dialogue, engagement with constituents is key.

Hear Our Voices: FASD Stakeholders Speak Out

A new report from the FASD UK Alliance – prepared by NOFAS-UK. Drawing on experiences of more than 50 individuals and families affected by FASD.

Hear Our Voices (PDF)

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