First, I thank colleagues from across the chamber who signed my motion, which has allowed this debate on foetal alcohol spectrum disorders—FASD—to take place this evening. I also thank everyone who has managed to stay behind tonight after what went before.
The timing of the debate is welcome, because tomorrow is international FASD awareness day. For their invaluable briefings, I thank Alison Douglas and Simon Jones of Alcohol Focus Scotland; Dr Jonathan Sher of the Queen’s Nursing Institute Scotland; Fiona Aitken and Aliy Brown of Adoption UK; and Dr Sarah Brown, consultant paediatrician, and Dr Jennifer Shields, principal clinical psychologist, of the foetal alcohol advisory support team, NHS Ayrshire and Arran, which is funded by the Scottish Government. I know that it sounds like an Oscar speech so far, but I will soon move on.
On 26 February, Aliy Brown and Dr Sarah Brown together delivered an excellent and informative presentation on FASD to the cross-party group on improving Scotland’s health: 2021 and beyond, of which I am the co-convener, along with Brian Whittle and David Stewart.
FASD is a range of conditions caused by exposure to alcohol at any stage of pregnancy. It affects physical and mental health, and capacity to learn. It is the most common but unrecognised neurodevelopmental condition in Scotland.
The United Kingdom has the world’s fourth-highest rate of alcohol consumption in pregnancy, and Glasgow’s Queen Mother’s hospital found that 40 per cent of newborns had alcohol biomarkers in their systems. It is of particular concern that 15 per cent of babies had levels indicating frequent binge exposure, with one in seven inferring a significant risk of FASD.
There is currently no research on FASD prevalence in Scotland. International research estimates the rate to be 3.25 to 5.25 per cent, which is three to five times that of autism, equating to 165,000 to 275,000 affected individuals. The majority will never have been assessed or diagnosed with FASD, or understood as having a lifelong brain injury that requires support through adulthood, as such individuals rarely have a global learning disability. Their patchy cognitive profile masks difficulties until milestones are not reached. Paradoxically, those who are cognitively impaired to the degree of a formal learning disability have better outcomes, as their needs are identified earlier. The journey into adulthood of those who are unidentified as having FASD and are without support is often characterised by poor educational attainment, unemployment, chronic mental health, trauma and addiction.
FASD affects people throughout their lives. Early diagnosis and support are crucial to avoid a range of issues that are commonly encountered. Some 90 per cent of those affected were estimated to suffer mental health problems; 79 per cent had experienced unemployment; 60 per cent had disrupted school experiences; 43 per cent had educational problems; 35 per cent were imprisoned as adolescents; and 23 per cent needed in-patient psychiatric care. Misdiagnosis and inadequate support shorten the life expectancy of people with FASD to just 34 years, with many preventable deaths attributable to addiction, misadventure or suicide.
Of course, drinking during pregnancy does not happen in isolation; it is a symptom of Scotland’s continued unhealthy relationship with alcohol. One in four people regularly drink above the chief medical officer’s low-risk drinking guidelines. Alcohol consumption in women of childbearing age is common, and 45 per cent of pregnancies in Scotland are estimated to be unplanned. It is vital that we recognise the profound impact that FASD can have on someone’s health and wellbeing throughout their life.
That the prevalence of FASD in Scotland is much higher than was previously thought is cause for concern, and we must do more to ensure that the message “No alcohol, no risk” during pregnancy is well known and understood not just by prospective mothers but by partners, family and friends who can offer support.
I highlight the case of John, a 10-year-old who was referred by his GP for assessment of his neurocognitive function due to his parent reporting behavioural problems, emotional concerns and poor school performance. His mother, Mrs Smith, worries about John being held back at school and her inability to control him at home and around other children. Since he was a toddler, John has displayed aggressive behaviour and difficulty with emotional control. He often provokes fights with other children and can have tantrums that last over an hour—crying, screaming, destroying property and hurting others. Behavioural concerns also include impulsivity and difficulty in maintaining attention and following directions. John frequently steals his siblings’ toys, hides broken toys and lies about how they were broken. Mrs Smith reports that he is never invited to friends’ homes, and teachers report repeated difficulty with peer interactions. Generally, John gets along with children two or three years younger than he is.
John has been seen by several mental health professionals and continues to be engaged in both psychopharmacological interventions and behavioural therapy. Mrs Smith drank several times a day and binged at weekends before and during pregnancy. John was diagnosed as having a neurodevelopmental disorder associated with prenatal alcohol exposure, and given a personalised education programme that included particular focus on providing additional time and repeating new lessons until competence was achieved. He was also given behavioural reinforcement, for example, by getting a gold star sticker immediately after turning in his homework. Due to difficulties with concentration, John sits at the front of the class and is given extra time to complete tasks. It will be a long, hard road ahead for John and his family.
Dedicated resources and practical assistance for parents of children with FASD and early assistance from professionals who are expert in the condition and on how it can be supported can transform the prospects of younger people who are affected. Adoption UK’s FASD hub Scotland, which is funded by the Scottish Government, sets an example of best practice by offering telephone and online support for families living with the condition. However, people with FASD might struggle to access diagnosis due to a misdiagnosis or lack of identification. NHS Ayshire and Arran’s foetal alcohol advisory and support team aims to address those challenges by offering support to FASD practitioners.
The Scottish women’s alcohol framework includes a commitment to
“support the current system to be much more responsive to the needs of individuals, families and communities affected by FASD”.
The Scottish Government’s rights, respect and recovery strategy commits to implementing a “whole family approach” to reducing drug and alcohol harms, providing a platform for increased focus on that issue.
Work is also under way to develop Scotland’s first national preconception framework, to support women of childbearing age and their families to access reproductive health services and avoid unplanned pregnancy.
A dedicated national strategy for FASD treatment and prevention is vital to bring focus and to co-ordinate efforts and resources in order to reduce and ameliorate the condition’s impact. Such a strategy would enable experience and learning from services such as the FASD hub Scotland and NHS Ayshire and Arran’s foetal alcohol advisory and support team, as well as the use of international evidence to improve the life prospects of people with FASD and their families.
Inconsistent messaging on alcohol products remains a concern, with 28 per cent of women in the UK unaware of the current health advice. The chief medical officer’s guideline for pregnant women and women who might become pregnant is to avoid alcohol completely, as no safe amount of alcohol can be consumed during pregnancy. Providing pregnancy-related warnings on alcoholic drinks is an important way of informing consumers of risks that are associated with drinking during pregnancy, but, sadly, such labelling is usually only pictorial and of minimal detail, and 30 per cent of it is illegibly small.
Alcohol Focus Scotland and the Alcohol Health Alliance UK are urging the Scottish Government to mandate, monitor and enforce alcohol labelling standards in line with World Health Organization recommendations. I ask the minister to commit to doing so today, while the power to do so is still devolved.
For those who are affected by FASD, understanding the condition and getting assistance is fundamental for enabling the children to go on to lead healthy, happy lives. The work of FASD hub Scotland is a lifeline for the parents and carers who need that vital support.
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