Informal Roundtable on Forthcoming NICE Quality Standard on FASD
17 May 2019 Informal Roundtable on Forthcoming NICE Quality Standard on FASD Manchester
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.
A Crisis of Commissioning: CCGs Are Failing Government Policy on FASD
Based on Freedom of Information requests to all Clinical Commissioning Groups and NHS Trusts and Health Boards, this report highlights the mismatch between government policy and actual practice. The vast majority of CCGs are not commissioning services for FASD prevention, diagnosis or post-diagnostic care for those with FASD.
Please click here for the media release that accompanied the launch of the report.
Policy Matters CCGs and FASD – Easy Read Version
What You Can Do
CCGs exist in England. If you live in England, write to your MP and ask them to contact the local CCG and ask about FASD services in your area. To find the response (if any) from your local CCG, go to www.whatdotheyknow.com and search for the name of your CCG and ‘FASD’ then it should pop up. The same search will work for NHS Trusts. If you have any trouble doing this, please let us know and we will try to help.
Ask your MP to join the APPG on FASD chaired by Bill Esterson MP. They can do so by emailing email@example.com. (NOFAS-UK now serves as the APPG secretariat.)
Contact your CCG and ask them to meet with you and other stakeholders about FASD. Ask the CCG to encourage the Department of Health and Public Health England to provide more guidance about FASD diagnosis, support and training for professionals. Click here for more information about CCGs and to find your CCG.
Contact your local media and explain the ‘local angle’ on this report from a national charity. “Local families unable to access services for brain-based conditions’. You can refer them to this media release which has quotes they can use from leading experts and other stakeholders.
Deputy Chief Medical Officer Meets FASD Stakeholders
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
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.
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
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.
A new series of informative notes from NOFAS-UK that make FASD-related government policy discussions more accessible to a wider audience, and draw attention of decision-makers to moments of opportunity.