GPs and Healthcare Professionals

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GP surgeries are on the frontline of FASD prevention, diagnosis and support

FASD is a prevalent lifelong neurodevelopmental disorder. It is heterogenous and GPs will see a variety of presentations in all age groups each year in their practice.

The GP and other practitioners in the GP surgery are in vital positions to give pre-conceptual advice around the reasons for alcohol abstinence in pregnancy in order to prevent babies being born with permanent brain damage.

GPs who can recognise possible cases of FASD are a vital first step on the life-changing path to diagnosis and appropriate support. For cases of suspected FASD GPs providing the correct referrals can make the world of difference to the outcomes for an individual and their families and could reduce the likelihood of associated issues.

Top 10 facts for GPs and other practitioners

There is no safe amount of alcohol in pregnancy. This has been the CMOs' guideline for some time.

Over 40% of women in the UK use alcohol during pregnancy.

FASD can only be caused by alcohol exposure during pregnancy.

FASD is more common than usually assumed, with a prevalence rate of at least 1.8 - 3.6%.

FASD is largely undiagnosed, leaving those living with it without the support they need and deserve

FASD diagnosis requires a multi-disciplinary assessment.

Early FASD diagnosis and appropriate support can reduce some of the long-term difficulties associated with FASD.

FASD is a permanent, lifelong condition. All with FASD have severe neurodevelopmental impairment. (There is no mild FASD.)

Alcohol-exposed pregnancies increase the risk of miscarriage, premature birth, still birth and SIDS, in addition to FASD.

There are 428 different conditions associated with prenatal alcohol exposure.

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There is no safe amount of alcohol in pregnancy. This has been the CMOs’ guideline for some time.
Over 40% of women in the UK use alcohol during pregnancy.
FASD can only be caused by alcohol exposure during pregnancy.
FASD is more common than usually assumed, with a prevalence rate of at least 1.8 – 3.6%.
FASD is largely undiagnosed, leaving those living with it without the support they need and deserve.
FASD diagnosis requires a multi-disciplinary assessment.
Early FASD diagnosis and appropriate support can reduce some of the long-term difficulties associated with FASD.
FASD is a permanent, lifelong condition. All with FASD have severe neurodevelopmental impairment. (There is no mild FASD.)
Alcohol-exposed pregnancies increase the risk of miscarriage, premature birth, still birth and SIDS, in addition to FASD.
There are 428 different conditions associated with prenatal alcohol exposure.

What GPs and practitioners can do

1. Inform women of childbearing age about the risks of alcohol in pregnancy.

2. Give pregnant women take-home printed information about the risks of alcohol in pregnancy.

3. Refer people presenting with physical, behavioural or developmental difficulties and possible prenatal alcohol exposure for FASD assessment.

4. Adult patients with FASD may experience continual issues with social relationships, mental health, employment, housing instability or substance misuse and may need referral for extra support and benefits.

5. Use FASD strategies when seeing or supporting a patient has FASD or suspected FASD.

6. Encourage local health boards and commissioners to ramp up FASD services. Ideas based on UK best practice are available in The Time is Now report.

New developments from DHSC, NICE, SIGN, PHE

On this page:

DHSC FASD Needs Assessment for England

The September 2021 DHSC FASD Needs Assessment for England is a must-read for healthcare practitioners. It identifies the seriousness of FASD in England and it lists priority areas for improving care for those with FASD. It highlights:

A lack of robust prevalence estimates in England;
The importance of multi-sector working to support individuals through the life course;
Better training and awareness for health professionals;
Better organisation of services to improve accessibility;
A need to develop innovative approaches to support those living with the condition.

NICE Quality Standard on FASD

All GPs and other healthcare professionals will find it useful to familiarise themselves with the coming NICE Quality Standard on FASD (2021), which is based on Scottish SIGN 156 (see below). All CCGs and NHS Trusts have to ‘have regard’ for NICE Quality Standards and show how they are improving the quality of services. This change will often start with the initial contact in GP surgeries.

The current draft identifies areas for improving quality of care regarding FASD and encourages training for GPs, community paediatric services, child development centres and CAMHS. The current draft includes:

Advice to pregnant women
Recording alcohol-exposed pregnancies
Referral for assessment
Neurodevelopmental assessment
Care management plan

SIGN 156 diagnostic criteria also applies in England

Scottish SIGN 156 (2019), “Children and Young People Exposed Prenatally to Alcohol” sets the diagnostic criteria for FASD. It has been accepted by NICE so it also is now the guidance for England.

Confirming prenatal alcohol exposure

Confirmation of prenatal alcohol exposure requires documentation that the biological mother consumed alcohol during the index pregnancy based on:

NOTE: a diagnosis of FASD is possible without confirmation of alcohol-exposed pregnancy in the <10% of instances when three sentinel facial features are present.

New diagnostic terms

Fetal Alcohol Spectrum Disorder with sentinel facial features (formerly Fetal Alcohol Syndrome)
Fetal Alcohol Spectrum Disorder without sentinel facial features-formerly Partial Fetal Alcohol Syndrome (pFAS), Alcohol-Related neurological Disorder (ARND), Alcohol-Related Birth Defects (ARBD), or Neurobehavioural Disorder-Prenatal Alcohol Exposure (NDPAE).

There is no ‘mild’ FASD
According to SIGN 156, “A diagnosis of FASD is only made when there is evidence of pervasive brain dysfunction, which is defined by severe impairment in three or more of the following neurodevelopmental domains”:

Motor skills
Cognition
Memory
Neuroanatomy/neurophysiology
Academic achievement
Language
Attention
Executive function, including impulse control and hyperactivity
Affect regulation, adaptive behaviour, social skills or social communication

“Severe impairment is defined as a global score or a major subdomain score on a standardized neurodevelopmental measure that is 2 or more standard deviations (SD) below the mean with appropriate allowance for test error.”

“The diagnostic/ descriptive criteria for FASD are the same for adults as for younger individuals”

SIGN 156 Tweet

PHE Maternity High Impact Area

PHE’s Maternity High Impact Area report, “Reducing the incidence of harms caused by alcohol in pregnancy” (2020) states:

“Drinking any alcohol can cause difficulties in pregnancy and can result in Foetal Alcohol Spectrum Disorder (FASD), causing lifelong disabilities for children. There is no safe time or safe amount of alcohol to drink during pregnancy.”

It lays out areas for improved commissioning of services.

Referrals are key

On this page:

GPs need more training

The National FASD GP Survey was conducted by OnePoll between August 22nd and September 1st, 2017. It polled 150 GPs that work in England. Principal outcomes were as follows:

Only 31% has in-depth education regarding FASD
41% have not received clear guidance regarding a pathway for diagnosis and support of FASD
Only 23% strongly agreed that they feel confident that all those with FASD are being diagnosed properly
Participants were recruited online and were paid.

If you are interested in training please contact us by emailing training@nationalfasd.org.uk, we can help arrange bespoke training for protected learning time, for CCGs and others – involving the country’s leading FASD experts.

NICE Quality Standard on FASD

Identifies areas for improving quality of care

DHSC FASD Health Needs Assessment for England

Newly released in September 2021 – a must read!

Scottish SIGN 156 Guidance

Children and young people exposed prenatally to alcohol (this has been accepted by NICE so also applies to England

The Time is Now: The National Perspective on Ramping up FASD Prevention, Diagnosis and Support Services

Based on roundtables with more than 60 leading practitioners, policy makers, experts and people with lived experiences, this document highlights best practices from across the UK and provides practical tips

Recognising FASD

Pamphlet explaining the new diagnostic process

FASD in Focus: Diagnosis & Assessments

BMA Report on Alcohol in Pregnancy

(2016)

Formal diagnosis at the earliest possible stage is paramount as it permits the implementation of early intervention and treatment programmes.”

Early diagnosis and intervention from birth and in the first years of life can make significant differences to the developmental progress of the affected child, and better understanding of the condition can help parents and professionals cope more appropriately with the child’s difficulties.”

Receiving an accurate and early diagnosis allows parents and carers to best accommodate the child’s environment to meet their needs and allows access to early interventions that may help to prevent secondary disabilities.”

GPs and Healthcare Professionals

GP surgeries are on the frontline of FASD prevention, diagnosis and support

Top 10 facts for GPs and other practitioners

What GPs and practitioners can do

New developments from DHSC, NICE, SIGN, PHE

DHSC FASD Needs Assessment for England

NICE Quality Standard on FASD

SIGN 156 diagnostic criteria also applies in England

PHE Maternity High Impact Area

Referrals are key

GPs need more training

Further reading

Resources

NICE Quality Standard on FASD

DHSC FASD Health Needs Assessment for England

Scottish SIGN 156 Guidance

The Time is Now: The National Perspective on Ramping up FASD Prevention, Diagnosis and Support Services

Recognising FASD

FASD in Focus: Diagnosis & Assessments

BMA Report on Alcohol in Pregnancy

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