In this guest blog, Kate Fleming, Senior Lecturer, Public Health Institute, Liverpool John Moores University, and Raja Mukherjee, Consultant Psychiatrist, Lead Clinician UK National FASD clinic, Surrey and Borders Partnership NHS Foundation Trust consider the context and future for Fetal Alcohol Spectrum Disorders in the UK.
A recent opinion piece in The Guardian entitled Nothing prepared me for pregnancy- apart from the never ending hangover of my 20s took a, presumably, humorous take on the tiredness, vomiting, dehydration, and secrecy that so many women live through in early pregnancy, likening this to days spent hungover after excessive drinking in the author’s early 20s.
The harms caused by consuming alcohol in pregnancy
Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term that encompasses the broad range of conditions that are related to maternal alcohol consumption. The most severe end of the spectrum is Fetal Alcohol Syndrome (FAS) associated with distinct facial characteristics, growth restriction and permanent brain damage. However, the spectrum includes conditions displaying mental, behavioural and physical effects on a child which can be difficult to diagnose. Confusingly, these conditions also go under several other names including Neuro-developmental Disorder associated with Prenatal Alcohol Exposure (ND-PAE) the preferred term by the American Psychiatric Association’s fifth version of its Diagnostic and Statistical Manual (APA DSM-V), alcohol-related birth defects, alcohol-related neuro-developmental disorder, and partial fetal alcohol syndrome.
How common is FASD?
A recent study which brought together information from over 300 studies estimates the prevalence of drinking in pregnancy to be close to 10%, and around 1 in 4 women in Europe drinking during pregnancy. Their estimates of FAS (the most severe end of the spectrum) were 14.6 per 10000 people worldwide or 37.4 per 10000 people in Europe, corresponding to 1 child in every 67 women who drank being born with FAS.
Given the figure for alcohol consumption in pregnancy is even higher in the UK, with some studies suggesting up to 75% of women drink at some point in their pregnancy, conservatively in the UK we might expect a prevalence of FASD of at least 1%. We also know that it is highly unlikely that anything close to this number of individuals have formally had a diagnosis. This lack of knowledge of the prevalence in the UK is hampering efforts to ensure the required multi-sector support for those affected by FASD and their families.
Current policy
For some time a significant focus of alcohol in pregnancy research was to try and identify a safe threshold of consumption, without demonstrable success. No evidence of harm at low levels does not however equate to evidence of no harm and as such in 2016 the Chief Medical Officer revised guidance on alcohol consumption in pregnancy to recommend that women should avoid alcohol when trying to conceive or when pregnant. Though this clarity of guidelines has been well received by the overwhelming majority of health professionals there are barriers to its implementation with few professionals “very prepared to deal with the subject”. In addition, knowledge of the guideline amongst the general public has yet to be evaluated.
As part of the 2011 public health responsibility deal a commitment to 80% of products having labels which include warnings about drinking when pregnant forms part of the alcohol pledges. A study in 2014 showed that 90% of all labels did indeed include this information. However, it has also been shown that this form of education is amongst the least effective in terms of alcohol interventions, and the pledge is no longer in effect.
Pregnancy is recognised as a good time for the initiation of behaviour change yet in the context of alcohol consumption it is arguably too late. An estimated half of all pregnancies are unplanned and there remains therefore a window of early pregnancy before a woman is likely to have had contact with a health professional and before the guidelines can be explained during which unintentional damage to her unborn baby could occur. The same argument can be used when considering the suggestion of banning the sale of alcohol to pregnant women – visible identification of pregnancy tends only to be possible at the very latest stages.
How then to address consumption of alcohol during pregnancy?
Consumption of alcohol is doubtless shaped by the culture and context of the society in which one is living. Highest levels of alcohol consumption in pregnancy are, unsurprisingly, seen in countries where the population consumption of alcohol is also highest. Current UK policy that is directed to reducing population consumption of alcohol will likely have a knock-on effect of reducing alcohol consumption in pregnancy.
Many women will however be familiar with the barrage of questions that they encounter when not drinking on a night out. From the not-so-subtle “Not drinking, eh… Wonder why that is? <nudge, nudge, wink, wink>” to the more overt “Are you pregnant?”. The road to conception and pregnancy is littered with enough stumbling blocks and pressures that the additional unintentional announcement of either fact of conception or intention to conceive is an unnecessary cause of potential further anxiety. Until society accepts that not drinking is an acceptable choice, without any need for clarification or explanation, then pregnant women or those hoping to conceive who are adhering to guidelines will continue to identify themselves, perhaps before they want to.
The UK’s All Party Parliamentary Group for FASD had its inaugural meeting in June 2015. This group calls for an increased awareness of FASD particularly regarding looked after children and individuals within the criminal justice system, sectors where the prevalence of FASD is particularly high. Concerted efforts need to be made to identify children with FASD to ensure that the appropriate support pathways are in place. Alongside this, efforts to ensure the best mechanisms for education of the dangers of alcohol consumption in pregnancy need to be increased, including training for midwives, and other health professionals who may be able to offer brief intervention and advice to women both before and after conception.
The views expressed by the authors are theirs alone and do not represent the views of Liverpool John Moores University, the UK National FASD clinic ot Surrey and Borders Partnership NHS Foundation Trust.
NOFAS run a national FASD helpline on on 020 8458 5951 as do the FASD Trust on 01608 811 599.
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