Hansard

It is my pleasure to bring this important debate on fetal alcohol spectrum disorder, known as FASD, to the chamber again, and I thank members from across the chamber for supporting my motion. I look forward to hearing everyone’s contributions, because we need to talk about the issue and, crucially, raise awareness of the condition, which is a significant public health matter in Scotland and globally.

FASD is a lifelong condition for which there is no cure, but—this is why we must raise awareness—it is entirely preventable. I say at the outset that I have no wish to blame or shame women: this is a plea to clinicians and to those in power—yes, politicians—that we must bring this underdiagnosed and devastating condition into mainstream public awareness. It is thought that around 4 per cent of the population are affected, and each person with FASD is affected differently, often requiring lifelong support and education in post-school settings to optimise their life experience.

FASD is a family of complex conditions arising from exposure to alcohol at any stage of pregnancy. It affects the child’s physical and mental health and capacity to learn, which continues into adulthood and is the most common, but unrecognised, neurodevelopmental condition in Scotland. It has been estimated that between 3 and 5 per cent of Scotland’s young people are living with FASD, but a recent study in the west of Scotland found that as many as 40 per cent of babies showed signs of exposure to alcohol in their second trimester, suggesting a higher prevalence than was previously thought to be the case. The Scottish Government estimated that in 2019, at least 172,000 children, young people and adults had FASD.

Of equal weight to prevention are early diagnosis and support for people with FASD, which are crucial to avoid a range of issues that are commonly encountered such as mental health problems, unemployment, disrupted school experiences, imprisonment and in-patient psychiatric care. Care-experienced people and homeless people are disproportionately affected. However, as with all conditions, the severity of symptoms varies. Some people are moderately affected and are able to live relatively normal lives with support and recognition of their condition.

At this point, I will introduce Dr Jonathan Sher to the debate. Dr Sher is a renowned international expert on FASD, a former deputy director of the Queen’s Nursing Institute Scotland and a founding partner of Scotland’s coalition for healthier pregnancies, better lives. In my opinion—at the great risk of embarrassing him—Dr Sher has done more to educate people and raise awareness of the condition than anyone on the planet. He believes that the primary prevention of FASD, along with efforts to diagnose and assist those who are harmed by FASD, should become equal priorities throughout Scotland.

The savings on the prevention side would easily more than cover the endless costs of failing to prevent FASD. A Canadian study reported that analysis indicated additional costs of $1.4 million—that is more than £1 million—to public bodies for each person with FASD. We must, therefore, identify solutions and take meaningful actions, and not just perennially identify and analyse problems.

Clinicians must be trained properly on the diagnosis of FASD and ways to assist those who are affected by it. A public awareness campaign is necessary to highlight the dangers of alcohol to expectant parents and those who are planning to conceive. Of course, alcohol producers must play a part in that initiative, with clear messages on their merchandise about the dangers of drinking during pregnancy. They absolutely have a public responsibility to do that.

Inconsistent messaging on alcohol products is concerning, with around a quarter of women in the United Kingdom reportedly unaware of the current health advice. Dr Sher points out that alcohol affects everyone in different ways and that what might simply have an impact on one person could be devastating to another. It is a bit like Russian roulette: will that one drink be the one that affects your baby?

Back in the day, the message to pregnant women of my generation was, “Limit your alcohol intake—the odd glass of wine won’t do any harm as long as you’re sensible.” Dr Sher’s message is that the only way to avoid giving your baby FASD is to drink no alcohol at all. He also highlighted the fact that a large number of children who go through the children’s hearings system—I am a former panel member—may well have been affected by FASD. Support for families who are affected by FASD, and early diagnosis, can transform the prospects of young people who are affected. The use of alcohol brief interventions for pregnant women is also a useful tool in reducing the risk.

Adoption UK’s FASD hub Scotland provides invaluable telephone and online support for families who are living with FASD, and is funded by the Scottish Government. However, the problems with diagnosis persist. In a previous debate on FASD in Parliament, I noted that Adoption UK had

“reported that 55 per cent of children waited two years or longer for their ... diagnosis and that 78 per cent of parents whose children were diagnosed with FASD did not feel that healthcare professionals are knowledgeable about the condition or its various presentations.”—[Official Report, 23 September 2021; c 37.]

Adoption UK recommends improved diagnosis and support for people who are living with FASD, through the introduction of a dedicated multiyear national strategy on treatment and prevention.

The Scottish Government’s “Alcohol Framework 2018: Preventing Harm” includes a commitment to

“support the current system to be much more responsive to the needs of individuals, families and communities affected by FASD”.

I look forward to a response from the Minister for Social Care and Mental Wellbeing on how that commitment is progressing.

The Government also undertook to develop Scotland’s first national pre-conception framework, supporting the health of women of childbearing age and their families. A key element of the framework will be supporting women to access reproductive health services and avoid unplanned pregnancy.

Scotland has an unhealthy relationship with alcohol, which we are trying to address by way of minimum unit pricing and improved public awareness of the dangers of alcohol. One in four people regularly drink above the levels in the chief medical officers’ low-risk drinking guidelines. Alcohol consumption among women of childbearing age is common, and 46 per cent of pregnancies in Scotland are estimated to be unplanned.

To conclude, FASD is a condition that is entirely preventable. It requires women not to drink for the entirety of their pregnancy, including avoiding alcohol while trying to conceive. The chief medical officers’ advice is, “No alcohol, no risk,” and I do not think that that is too much to ask in order to bring a healthy baby into the world.