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NICE

Out now!

“Not Commissioned: Systemic confusion in NHS Services for alcohol, pregnancy and FASD” – a biennial progress report on NICE Quality Standard 204 based on Freedom of Information requests.

Key findings:

  • The majority of NHS Integrated Care Boards and NHS Trusts are missing a golden opportunity to protect baby’s brains and futures with their slow, non-strategic and uncoordinated responses to the 2022 NICE Quality Standard 204 on Fetal Alcohol Spectrum Disorder (FASD). NICE QS 204 is in effect in England and Wales and calls for improvements in care regarding discussions about risks of alcohol in pregnancy during antenatal visits and recognition, diagnosis and support of those with FASD.
  • While there are pockets of hope and encouraging progress, more broadly there is systemic confusion and a lack of coordination and commissioning across the NHS.
  • Nearly 53% of Integrated Care Boards (ICBs) and 56% of NHS Trusts (not including the 11 specialist ambulance trusts) that replied by the statutory deadline to National FASD’s Freedom of Information requests are not taking action to meet the needs of this vulnerable population with FASD and to prevent alcohol-exposed pregnancies. In Wales all the health boards that responded are taking at least partial action.
  • There are unclear lines of responsibility between ICBs/ Health Boards and Trusts, as well as within Trusts between different services.
  • The vast majority of English ICBs that replied by the statutory deadline are not commissioning for diagnosis and management of care for children (70%), young people (73%), and adults (87%) and the majority of Welsh Health Boards have not commissioned services for diagnosis and management of people for children (67%), young people (67%) and adults (83%). Responses indicate the rest of the NICE QS 204 suggestions for commissioners are not being followed.
  • There is a nearly universal failure to track improvements in services over time using NICE indicators.
  • Training across the workforce as called for by NICE is not happening in many areas.
  • Local pathways are unclear and under resourced. Many responses indicate that local diagnosis is not available.
  • Appendices include the questions asked and the responses received and link to the full responses to help spur creative thinking from leaders in different areas.

The National Institute for Health and Care Excellence (NICE) Quality Standard on FASD

For National FASD’s 16 March 2022 statement on the NICE Quality Standard please click here.

If you are encountering resistance for diagnosis or support from your doctors, local Integrated Care Board/Health Board or NHS Trust, you can help them understand that change is coming. NICE has released a Quality Standard on FASD.

This Quality Standard applies to England and Wales (and serves as best practice for other nations). It covers assessing and diagnosing Fetal Alcohol Spectrum Disorder (FASD) in children and young people. It also covers support during pregnancy to prevent FASD. It describes high-quality care in priority areas for improvement.

While Quality Standards aren’t mandatory, Integrated Care Systems (ICS) are supposed to ‘have regard’ for them and demonstrate how they are improving quality of care.

The NICE Quality Standard on FASD is based on the Scottish SIGN 156 Guideline on Children and Young People Exposed Prenatally to Alcohol. 

The NICE Quality Standard is available here.

The Quality Standard has 5 quality statements at its core:

Statement 1 Pregnant women are given advice throughout pregnancy not to drink alcohol.

Statement 2 Pregnant women are asked about their alcohol use throughout their pregnancy and this is recorded.

Statement 3 Children and young people with probable prenatal alcohol exposure and significant physical, developmental or behavioural difficulties are referred for assessment.

Statement 4 Children and young people with confirmed prenatal alcohol exposure or all 3 facial features associated with prenatal alcohol exposure have a neurodevelopmental assessment if there are clinical concerns.

Statement 5 Children and young people with a diagnosis of fetal alcohol spectrum disorder (FASD) have a management plan to address their needs.

New! Easy Access Policy Matters: NICE Quality Standard (March 2022)

The Time is Now: The national perspective on ramping up FASD prevention, diagnosis and support services

Report cover for The Time is Now: Ramping Up FASD prevention, diagnostic and support services, features a young man with chin on hand, smiling

This new report is based on a series of roundtables with more than 60 leading experts, clinicians, policy makers, commissioners and people with lived experience. It provides practical suggestions on how to move forward.  

See more information about The Time is Now here.

See two of our advisors Jan and Rossi talking about the importance of the NICE Quality Standard

Jan Griffin is a member of the National FASD Experts Committee and Rossi is a member of  our Adults and Young Adults with FASD Advisory Committee. Together they are “Birth Mum and Son” and have lots of great activities planned. More info about their awareness raising is here.  Note: We reject the BPAS characterisation of the risks of alcohol in pregnancy and remind people the NICE Quality Standard says there is no known safe amount of alcohol in pregnancy. 

Earlier reports

Informal Roundtable NICE Quality Standard on FASD

National FASD hosted an informal roundtable on the forthcoming NICE Quality Standard on FASD in the week following the announcement in May 2019. 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.

Report from Roundtable (2019)

Easy Access – FASD Policy Matters: What’s New? (2019)

National FASD favicon

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