Better quality care in England and Wales for people with FASD
The health advisory body for England and Wales has issued a long-awaited piece of guidance on how to improve the prevention and management of fetal alcohol spectrum disorders (FASD) – a group of lifelong behavioural, cognitive and physical disabilities caused by exposure to alcohol before birth.
On 16 March 2022, the National Institute for Health and Care Excellence (NICE) published new guidance (known as a ‘quality standard’) for FASD, which aims to reduce the rate of alcohol-exposed pregnancies, increase rates of diagnosis, reduce the average time taken to receive a diagnosis, and improve health-related quality of life among people diagnosed with FASD.
Dr Paul Chrisp, director of NICE’s centre for guidelines, said:
“We know children and young people with FASD often have a poorer quality of life and must overcome some incredibly difficult challenges in their daily lives.
This quality standard aims to improve the diagnosis and care offered to children and young people with FASD as well as ensuring that women are given consistent advice about their alcohol consumption during pregnancy.
FASD is a series of preventable mental and physical birth defects associated with alcohol use during pregnancy. Helping women to drink less or no alcohol during their pregnancy will reduce the number of children and young people affected by FASD.
Data on the number of children and young people in the UK with FASD are limited, with no single reliable source. It’s important that we have clearly defined areas for improvement in place to reflect national priorities, promote best practice and help all those involved in delivering services to provide the very highest levels of care.”
Areas for improvement
NICE quality standards set out priority areas for improvements in health, public health and social care. Each standard includes a set of statements designed to improve quality, as well as information on how to measure progress. Although the recommendations are not mandatory, NICE states that “they do support the government’s vision for a health and care system focused on delivering the best possible health outcomes”.
NICE identified five key areas and recommendations for improving prevention, diagnosis, and treatment of FASD:
- Pregnant women should be given advice throughout pregnancy not to drink alcohol.
- Pregnant women should be asked about their alcohol use throughout their pregnancy and this should be recorded.
- Children and young people with probable prenatal alcohol exposure and significant physical, developmental or behavioural difficulties should be referred for assessment.
- Children and young people with confirmed prenatal alcohol exposure or all three facial features associated with prenatal alcohol exposure should have a neurodevelopmental assessment if there are clinical concerns.
- Children and young people with a diagnosis of FASD should have a management plan to address their needs.
Implications for different stakeholders
The quality standard considers the implications for service providers, healthcare and education professionals, commissioners, pregnant women, children affected by prenatal exposure to alcohol, and parents and carers – all of whom have a stake in preventing FASD or improving the quality of life for people with FASD.
For example, for healthcare professionals (e.g. midwives, nurses, doctors and health visitors), the quality standard advises that:
- they provide verbal and written advice that the ‘safest approach’ is to avoid drinking any alcohol during pregnancy
- they record information on a woman’s alcohol consumption during pregnancy in her maternity records at antenatal appointments, including the number and types of alcoholic drinks consumed, as well as the pattern and frequency of drinking
- they are involved in neurodevelopmental assessments of children and young people with prenatal alcohol exposure if there are clinical concerns about their physical, developmental or behavioural difficulties
For commissioners (e.g. clinical commissioning groups, integrated care systems and NHS England), the quality standard recommends that they:
- commission maternity services that give advice at antenatal appointments about not drinking alcohol during pregnancy
- commission services for pregnant women who are alcohol dependent, as well as pregnant women who continue to drink but are not alcohol dependent
- commission services for neurodevelopmental assessments that consider FASD as a diagnosis
- commission services that provide a management plan and support for children and young people diagnosed with FASD
Positive reactions to the new quality standard
There was a lot of anticipation around this NICE guidance, primarily because England and Wales were already several years behind Scotland, which issued its own guidance in January 2019, along with a number of diagnostic tools for clinicians, including an FASD assessment form, a diagnostic flow chart, and a neurodevelopmental pathway.
The quality standard published on 16 March 2022 was welcomed by organisations who campaign for better support for families affected by FASD, such as Adoption UK and the National Organisation for FASD.
Aliy Brown, FASD Hub Project Manager & Adoption UK FASD Lead, said:
“The introduction of the NICE quality standards has been long awaited by so many families. Today is a time to pause and celebrate. Next, we need to make sure the professionals for whom the guidance is written fully understand how to use them. This is just the start of ensuring everyone with a history of prenatal alcohol exposure receives the support and understanding they so deserve and need throughout their lives.”
Sandra Butcher, Chief Executive of the National Organisation for FASD, said:
“The new NICE Quality Standard on Fetal Alcohol Spectrum Disorder (FASD) is a massive step forward for the UK’s FASD community. Taken with other recent policy shifts, it represents officialdom now saying that FASD is recognised, and the struggles that people with FASD and their supporters face are real. The country must take note and local decision-makers should take action. It’s not going to change things overnight and it’s not perfect. But it is leaps and bounds ahead of where I thought we might be when the NICE Quality Standard process began.”
Critical reactions to the new quality standard
An early draft of the quality standard, which was published for consultation in March 2020, also generated anticipation. There was concern among women’s organisations that two of the recommendations in the draft text would sacrifice the standard of women-centred antenatal care in order to improve the delivery of services for FASD – these were the recommendations for midwives and other clinicians to (1) screen for drinking throughout pregnancy, and (2) to transfer information about a woman’s drinking during pregnancy to her child’s medical records after birth.
The press release for the final version of the quality standard stated that, “Following consultation, a draft statement that recommended that a mother’s alcohol consumption should be included on the child’s medical records has been changed.” The recommendation for repeated enquiries about alcohol consumption throughout pregnancy was retained.
Responding to the publication of the guidance, a spokeswoman for the Royal College of Midwives (RCM), Lia Brigante, said:
“As there is no known safe level of alcohol consumption during pregnancy, the RCM believes it is appropriate and important to advise women that the safest approach is to avoid drinking alcohol during pregnancy and advocates for this.
We are pleased to see that the recommendation to record alcohol consumption and to then transfer this to a child’s record has been reconsidered.
This had the potential to disrupt or prevent the development of a trusting relationship between a woman and her midwife.”
The British Pregnancy Advisory Service (BPAS) also issued a statement, which said that it “welcome[d] the decision by NICE to drop proposals to automatically transfer any alcohol consumption reported by a pregnant woman to her child’s medical records”, but “remain[ed] concerned about the routine questioning of women throughout pregnancy on this issue”.
“We welcome the decision by NICE to drop proposals to automatically transfer any alcohol consumption reported by a pregnant woman to her child’s medical records. It is absolutely staggering that these measures, which had no basis in evidence and would have amounted to an extraordinary infringement on women’s right to privacy, were ever suggested by NICE in the first place. While we are pleased to see that this recommendation has been dropped, we remain concerned about the routine questioning of women throughout pregnancy on this issue.
The vast majority of women do not consume alcohol once pregnancy is confirmed, or consume at levels not associated with harm. Our research shows women find antenatal discussions about alcohol – even when they don’t drink at all – can supersede other issues important to them, like their own mental health and wellbeing. Those supporting pregnant women must be able to provide care that meets the need of the individual before them, not just to fill in boxes on a checklist.”
For related content, browse through The Pregnancy Edit – a series of articles and resources on alcohol-related harm in pregnancy – which includes an interview with Aliy Brown (FASD Hub Scotland) about the challenges of diagnosing, treating, and preventing FASD, and the progress Scotland has made in building support services for young people, families, social workers, educators, and clinicians.
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