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The next item of business is a members’ business debate on motion S6M-13767, in the name of Rona Mackay, on fetal alcohol spectrum disorder awareness month. The debate will be concluded without any question being put. I invite members who wish to participate to press their request-to-speak button.
Motion debated,
That the Parliament notes that September 2024 is International Foetal Alcohol Spectrum Disorder (FASD) Awareness Month; recognises that alcohol exposure in pregnancy may lead to permanent harm to the unborn child, with lifelong consequences; understands that FASD is the most common preventable neurodevelopmental condition in Scotland; further understands that at least 3.2% of individuals in Scotland are affected; notes that the Chief Medical Officer’s advice is to avoid alcohol if pregnant or if planning to become pregnant; believes that 40% of pregnancies are currently unplanned; recognises what it sees as the importance of early identification and support of FASD to avert negative outcomes, such as addiction, mental ill health, suicidality and judicial system involvement; considers that, with the right support, individuals can prosper in their educational and life endeavours and reach their own potential; recognises what it sees as the excellent work of the FASD Hub Scotland in supporting those with FASD, their families and professionals who work with them; notes the belief that it is important to increase access to awareness and diagnostic training for practitioners to enable access to diagnostic and support services for those with FASD and their families; further notes the belief that alcohol producers should be mandated to provide clear written pregnancy warnings on their products; highlights what it sees as the important work of the pre-conception strategy for Scotland; understands that there is an economic benefit of £1.4 million for each case of FASD that is prevented, and notes the belief that more must be done to reduce alcohol exposure in pregnancy.
12:52
I thank all colleagues from across the chamber who signed my motion, which has allowed me to hold this important debate during international fetal alcohol spectrum disorder awareness month. This is the third debate on FASD that I have held in the chamber in the past five years. Once again, I am delighted to be able to raise awareness and to highlight the sterling work of clinicians and researchers.
Around 200,000 people in Scotland—3.2 per cent of our population—have FASD, although that is probably a dramatic underestimate, because FASD is the most common neurodevelopmental problem and it is chronically underdiagnosed. Amazingly, only around 1 per cent of people have ever been formally diagnosed and properly supported.
FASD is a birth defect; it is not acquired later in life. It is a lifelong, incurable neurodevelopmental condition that is caused by exposure to alcohol in the womb. The only way to avoid it is for pregnant women to abstain from alcohol.
Dr Jonathan Sher, senior fellow of the Queen’s Nursing Institute of Scotland, has devoted much of his clinical career to research on and the prevention of FASD in Scotland and internationally. I first heard him speak more than a decade ago when I was involved in the children’s hearings system in the east end of Glasgow. That speech made a great impression on me, and it explained many questions that I had about the multiple and recurring issues that were experienced by children who attended the panel.
The condition was first identified in the 1970s and was referred to as fetal alcohol syndrome. At the time, it was identified by distinctive facial characteristics, but it has since been learned that people with certain facial features account for only approximately 10 per cent of those who have FASD—90 per cent cannot be identified by their facial features.
What is known is that 100 per cent of people with FASD have problems relating to three things: an inability to plan, an inability to learn from experience and an inability to control impulses. Those can lead to addiction, mental ill health, suicidality and involvement in the justice system.
I am convener of the women, families and justice cross-party group, which was privileged to have Dr Sher present at a recent meeting. He explained that, with the right support and, crucially, early diagnosis, people can reach their potential and achieve their life goals.
I would also like to mention the former chief inspector of prisons, Wendy Sinclair-Gieben, who has considerable expertise in this field. She previously worked in Canada as a teacher, where FASD was recognised as a problem, particularly among the Inuit, who were introduced to alcohol by people who were not native to Canada. At the meeting, Wendy spoke of her experience in Australia, where the prison population included a high number of people with FASD. The problem was diagnosis, and that is the problem here, too.
The Scottish Government takes the subject very seriously. The FASD hub Scotland does excellent work in supporting people with FASD, their families and the professionals who work with them. Diagnostic training for practitioners is crucial in this field, as is alcohol producers’ responsibility in relation to prevention of the condition at the pre-conception stage. It is essential that clear written pregnancy warnings are provided on their products, not least to prevent the condition from happening. In my view, that is the most important factor, but there is an economic benefit of £1.4 million for each case of FASD that is prevented.
The Scottish Government’s “Alcohol Framework 2018: Preventing Harm” sets out a commitment to increase awareness of FASD and support improved diagnosis. In addition, the women’s health plan includes a commitment on pre-pregnancy planning. The right information must be available for people at the right time, including pre-conception. Information is published on NHS Inform and in the “Ready Steady Baby!” book, which provide the clear message, “No alcohol, no risk”, whether someone is pregnant or is trying to conceive.
The Government funds two key organisations to deliver the work that the FASD hub does through Adoption UK Scotland, as well as providing support, training and advice to professionals who work with people with FASD. In 2017, Adoption UK conducted a survey of nearly 3,000 adopters, and 70 per cent of respondents said that they were not warned that their child could be at risk of FASD when they adopted.
The Scottish Government also works with the fetal alcohol advisory support and training—FAAST—team at the University of Edinburgh, which, by delivering its diagnostic course to a number of medical professionals, has allowed them to gain the knowledge and skills that they need in order to support and diagnose people with FASD and to translate assessment findings into indications of what post-diagnostic support is needed.
In addition, this year, the Government has allocated £55.5 million to boards via the mental health outcomes framework to improve the quality and delivery of mental health and psychological services for everyone. Work is on-going with the national autism implementation team to develop services around support and diagnosis for neurodivergent adults, including people with FASD.
Progress has been made over the past 19 years, but it has not been made quickly enough, and we must do more. We need to bring about a cultural shift in drinking generally. It is important to say that, today, more young women who are trying to conceive, and expectant mothers, know that they should not drink. However, this is not about naming, blaming and shaming women. The point is that we need to take seriously prevention and pre-conception health education on preparing for pregnancy, which includes preventing FASD. We need early diagnosis and much-raised awareness of the condition. FASD is a preventable condition, and it is the responsibility of all of us, working together, to prevent it entirely.
12:58
I draw members’ attention to my entry in the register of interests: I am a practising national health service general practitioner.
As we recognise international fetal alcohol spectrum disorder awareness month, we must confront the stark realities of the condition. FASD is the most common preventable neurodevelopmental disorder in Scotland, full stop. It is caused by prenatal exposure to alcohol, which is a substance that can inflict irreversible harm on the unborn child.
As healthcare professionals, we see at first hand the lifelong consequences of the condition, not only for the child but for families and society as a whole. It is estimated that between 3 and 5 per cent of people in Scotland could be living with FASD. There are more than 45,000 births each year, and a shocking one in seven newborns is at risk of FASD, which is preventable. That is higher than the prevalence of autism, which is currently at 1 per cent. Those numbers should alarm us all, but, tragically, they reflect Scotland’s wider struggles with alcohol harm.
The reality is clear: the Scottish National Party Government’s policies are failing to deliver the necessary preventative measures. The chief medical officer’s advice is simple—people who are pregnant or who are trying to conceive should entirely avoid alcohol—but when 40 per cent of pregnancies are unplanned and alcohol misuse is a key contributor to risky sexual behaviour among younger people, the chief medical officer’s guidance must be supported by robust public health measures.
The SNP’s flagship policy of minimum unit pricing it is certainly not the answer. It has been paraded as a silver bullet for tackling alcohol harm, but it does nothing to directly address FASD or the broader issues of alcohol abuse, addiction and the long-term social harm that it causes.
The latest data suggest that alcohol-related deaths in Scotland have reached a high not seen since 2008. Where is the success in that? MUP has been in place for six years, but we still see no meaningful improvement in the conditions that lead to FASD. MUP also fails to tackle the root cause of many unplanned pregnancies or to ensure proper education about the dangers of alcohol during pregnancy. We cannot allow SNP members to pat themselves on the back while the very people they claim to protect suffer the consequences of weak and ineffective policy.
FASD does more than affect the child’s health: it leads to higher rates of addiction, mental ill health, suicide and involvement with the judicial system. Without the right support structures in place, those children, through no fault of their own, are left with life-limiting challenges that could have been avoided.
The economic argument is also compelling. It is estimated that preventing just one case of FASD saves £1.4 million in a lifetime, yet the Government persists with a policy agenda that kicks the problem down the road, allowing future generations to bear the burden. We need practical, targeted interventions, better education, more robust public health campaigns and immediate support for families affected by FASD, not ideological quick fixes that do nothing to alleviate the strain on our NHS.
I am interested to hear what solutions Dr Gulhane and his party may have worked out. A good part of his speech has been dedicated to detailing the problem and criticising the Government, but I wonder whether he would like to elaborate more on the solutions.
One of the first things that we would like to do is to introduce a right to recovery bill that would give people the right to recover from alcohol addiction, along with that caused by drugs. That would be a first step. We need to put more money into prevention and treatment. That is key: we can treat people to get them out of the cycle that they are in.
The SNP has had 17 years in power and its record on alcohol harm speaks for itself. We have had enough of hollow promises because Scotland deserves better. FASD prevention and support should be at the forefront of our alcohol policy and it is time for this Government to face the consequences of its failure.
13:02
I am pleased to speak in this debate and thank my colleague Rona Mackay for bringing this important topic to the chamber. Fetal alcohol spectrum disorder awareness month is a time to educate ourselves and our communities about the impact of alcohol consumption during pregnancy and to advocate for those who are affected by fetal alcohol spectrum disorder.
Exposure to alcohol during pregnancy can lead to permanent harm for an unborn child and can have lifelong consequences, such as cognitive and behavioural issues and physical disabilities such as organ damage and poor growth. It is estimated that between 3 and 5 per cent of people in Scotland could be living with FASD, although some suggest that figures could be even higher. It affects people throughout their lives, impacting their ability to engage in daily life if early support is not put in place.
Despite its prevalence, awareness and understanding of FASD remains low, so it is our responsibility to raise awareness and to educate ourselves and others. Key to that is understanding that there is no safe level of alcohol consumption during pregnancy. The chief medical officer is clear that it is best to avoid alcohol during pregnancy, and even while planning to get pregnant, because that is crucial to protecting the health of future generations. Early identification and support are crucial and, with comprehensive support, individuals with FASD can prosper and can meet educational and life goals.
In Scotland, we are fortunate to have a network of organisations that are available to support those with FASD and their families. The FASD hub Scotland is a perfect example. Funded by the Scottish Government, it offers peer support, training and one-to-one family support services whereby parents and carers will guide people through the process of getting a diagnosis and help them with accessing benefits, funding and additional support. Such organisations play a crucial role in increasing awareness and providing a safe space for parents and carers to share their journeys and experiences. As MSPs, it is our job to make sure that they are highlighted in Parliament and in our constituencies so that people are aware of the supports that are out there.
I agree with my colleague Rona Mackay that it is also important to increase awareness and training for practitioners to enable access to diagnostic and support services for those with FASD and their families. It is therefore welcome that, through the Scottish Government’s funding, the fetal alcohol advisory support and training team has a national remit to provide and facilitate training, consultation and research. That will enhance the capacity, knowledge and confidence of Scotland’s health and social care workforce in their work with those who are affected by FASD. I am also pleased to note that, as of last month, the University of Edinburgh offers Europe’s first postgraduate certificate in FASD.
FASD awareness month is also about recognising the resilience and strength of those who live with FASD and their families. With the right support, they can flourish. Support networks are key to that, because they foster connections between families and provide a safe space for them to share experiences and advice. As we mark fetal alcohol spectrum disorder awareness month, we must recommit our efforts to raise awareness throughout our communities and work together to reduce the rates of FASD while continuing to advocate for the rights and needs of those who are affected. Together, we can create a country where individuals are—rightly—supported and empowered to live their best lives.
13:07
I, too, thank Rona Mackay for her commitment to fetal alcohol spectrum disorder and for bringing this important debate to the chamber to mark international FASD awareness month. As others have said, it is vital that the Parliament has an opportunity to talk about the issue, raise awareness and call for continued action to support interventions. As parliamentarians, we have a responsibility to look at how we reduce the prevalence and impact of FASD in Scotland and support those who live with it.
As we have heard, it has been estimated that about 3.2 per cent of Scotland’s young people live with FASD. That figure is stark when we consider that, as the motion states, it is the most common preventable neurodevelopmental condition in Scotland. The evidence from the University of Glasgow, which members have mentioned, suggests that the prevalence could be higher than we previously thought, with about 42 per cent of babies having been exposed to alcohol in pregnancy and 15 per cent showing signs of exposure to high and frequent consumption.
As has been stated, FASD is preventable, and the UK chief medical officers have made it clear that alcohol and pregnancy do not mix. They recommend that the safest approach for people who are pregnant or are planning a pregnancy is not to drink alcohol at all. That will keep the risks to the baby to a minimum. Drinking alcohol at any stage of pregnancy risks the development of a neurodevelopmental disorder, and it is important that people understand that.
However, I want to make two points in that regard. First, more than a quarter of women in the United Kingdom are unaware of that advice not to drink alcohol. Secondly, it is estimated that 45 per cent of pregnancies in the UK are unplanned. What do we do about that? How do we make sure that that information is available to young women who are planning a pregnancy and to those who do not know that they are pregnant?
Clearly, there is an important piece of work to be done to ensure that the messaging is clear for women throughout their life, so that they get that information. We have a responsibility to make sure that our pre-conception strategy is such that people get that information.
Another important point is that binge drinking—consuming lots of alcohol in a short period of time—is thought to bring a particular risk of FASD. We know that, in Scotland, there is an element of binge drinking among women. We in the Parliament must use the opportunity of this debate to talk about the wider approach to an alcohol strategy for Scotland that seeks to change our problematic relationship with alcohol.
Alcohol policy needs to be a range of measures, formulated and implemented by the Government and other public bodies, that are designed to prevent, improve or treat the health and social problems that are associated with problematic alcohol use. Given past commitments from the Government and the minister, I hope that, in her response to the debate, she will discuss the public health measures on which we might be able to improve and move forward, and the pace at which we might do that.
As I draw my remarks to a close, I thank all colleagues for the discussion. We must seek to get the best support for those who live with FASD, and we must seek to improve diagnosis and support. However, prevention is key and, in Scotland, we know that we need to move forward with that. I thank all my colleagues for contributing.
13:11
September marks fetal alcohol spectrum disorder awareness month, and I am grateful to my friend Rona Mackay for securing this important debate. Since 1999, 9 September has been international FASD day. The ninth day of the ninth month signifies that abstaining from alcohol for the nine months of pregnancy can help to ensure that babies will not be born with FASD.
Fetal alcohol spectrum disorder is not the only outcome of drinking alcohol in pregnancy—doing so also increases the risk of miscarriage, premature birth, stillbirth and sudden infant death syndrome. The figures from the Scottish FASD strategy group show that, on average, of pregnancies in which the baby is exposed to alcohol in Scotland, 15 per cent involve high and frequent consumption. The figures show that the United Kingdom experiences the fourth-highest prenatal alcohol exposure of anywhere in the world. In Scotland, around 3 to 5 per cent of the population is estimated to have FASD, in contrast to an estimated 0.8 per cent globally. That underscores the scale of the work that needs to be done.
We have heard from members across the chamber about the impact of FASD on individuals. That has been covered well, so I will not repeat the remarks that have been made. However, earlier in the session, I had the pleasure, as I am sure many colleagues had, of speaking to people who have been diagnosed with FASD, when they held an exhibition in the Parliament. Many spoke of the stigma that they felt as a result of a health condition that was not of their own making. Some spoke passionately about how they used their experience to educate other people about the challenges that they face when it comes to their health and the challenges and barriers that affect them in relation to other services.
One issue that was highlighted was that people with FASD are often diagnosed with other neurodevelopmental conditions and therefore receive the wrong treatment and support. It is therefore important, as Rona Mackay said, that clinicians get the right training to appropriately diagnose those who present looking for help.
I take the opportunity to highlight some of the incredible work that is being done in my region to support those with FASD. The North Lanarkshire Alcohol and Drug Partnership provides face-to-face training for professionals and parents and carers, peer support so that people can share experience, and family events and meet-ups to support families and those who are diagnosed with FASD.
In Falkirk and across the Forth Valley NHS Board area, Scottish Families Affected by Drugs and Alcohol offers remarkable support to those who are affected by FASD conditions. The Forth Valley family support team schedules sessions that last around an hour. It travels across Forth Valley and frequently uses rooms in libraries, community centres and treatment services to meet family members, thereby taking support to those who need it. That is in addition to the work of an incredible array of third sector organisations and charities that work around the clock to deliver support in both health board areas that span the Central Scotland region and, indeed, more broadly across Scotland.
We must continue our efforts to prevent fetal alcohol spectrum disorder and to treat addiction issues with the urgency that they require. That is why we cannot forget that FASD often exacerbates existing forms of poverty and deprivation. As a result, we must work in tandem to continue to raise awareness of the risks of drinking during pregnancy, redouble our efforts to reduce the overall population’s consumption of alcohol and ensure that people who are affected by FASD are identified and supported appropriately and adequately in a timely manner. That can happen only if we are able to ensure that the national neurodevelopmental assessment pathway is adequately resourced to allow early identification of and appropriate support for people with FASD.
I also believe that we must consider the lived experience of pregnant women and enhance pathways for them to obtain support. Many challenges exist in our most deprived areas, which, along with a lack of awareness and understanding of FASD, are particularly problematic. We must ensure that our most vulnerable people receive an extensive range of support and assessment.
13:16
I, too, commend Rona Mackay for bringing this important issue to the chamber.
Colleagues have raised a multitude of important points. I want to raise one other matter on behalf of a constituent who has been in touch with me recently and on behalf of other constituents who have contacted me in the past on the same issue.
Other members have talked extensively and passionately about the support that is available to families and parents. Another issue that has come across my desk through my constituency casework has been the availability of support for adoptive parents who are raising children with FASD. That is a problem in my constituency, and I am sure that it will apply elsewhere. As a society, we want to encourage adoption and ensure that support for adoptive parents is available in the same way that it should be for other parents.
Either in her summing up or in written correspondence with me after the debate, perhaps the minister could give more insight into the availability of support for adoptive parents who are in the unique position of raising children with FASD and what support they are able to access. Perhaps we could engage in correspondence on how the situation could be enhanced and improved.
13:18
I, too, thank Rona Mackay for bringing the debate to the chamber as part of international fetal alcohol spectrum disorder awareness month.
Like Gillian Mackay, earlier in the session I met and spoke with people who live with FASD, and I was very struck by what I heard. Ben Macpherson has just spoken about support for adoptive parents, and I had a conversation about exactly that issue. I will be happy to discuss the subject further with him.
The Scottish Government is committed to preventing the harm that is caused by alcohol consumption during pregnancy and to supporting people who are impacted by fetal alcohol spectrum disorder. I will outline our approach to prevention, as well as the work that is on-going to improve the lives of people who live with FASD.
As other members have said, the chief medical officer’s clear message on the consumption of alcohol during pregnancy remains, “No alcohol, no risk”. That message features on the Ready Steady Baby! pregnancy advice web pages and on NHS Inform’s website, where there is information on why women should avoid alcohol when they are pregnant or are trying to conceive. For some time, we have recognised the importance of pre-conception care to aid pregnancy planning and preparation, where that can significantly reduce avoidable harm, including alcohol.
As others have mentioned, the women’s health plan, which was published in August 2021, contains an action on supporting pre-pregnancy care. As part of that commitment, NHS Inform launched information on pre-pregnancy health in October 2023, to bring together information and support for women and men to consider when planning a pregnancy. Our work is also focusing on ensuring that key messages, knowledge and awareness are embedded across the health system, connecting the public health outcomes that have the highest risk of poor outcomes for mother and baby with those that have the highest potential to improve short and longer-term health. That includes the risk of drinking alcohol during or when planning for pregnancy.
Improving pre-conception care requires a dual strategy that targets health improvement in both women and men when planning a pregnancy and in the general population of reproductive age. Last week, as Carol Mochan will recall, she, Dr Gulhane and I took part in a public health event at which this specific question was raised, and I have committed to extending that conversation and, indeed, am happy to continue it with Carol Mochan.
Pre-conception plays a key role in the early child development transformational change programme, which aims to reduce by 2030 the proportion of children reported as having developmental concerns at 27 to 30 months by a quarter. As the First Minister affirmed in his statement introducing the programme for government, addressing risks and problems at that stage can have positive impacts that last through to adulthood. It can support healthy development, prevent illness and ease future pressures on services.
The Scottish Government is determined to ensure that people living with FASD have the opportunity to live life on their own terms, properly supported when they need to be. We are committed to improving outcomes and opportunities for all neurodivergent people. As Rona Mackay and Carol Mochan have said, FASD is the most common preventable neurodivergent condition; it is lifelong and can affect every area of a person’s life, and we are working across Government on our neurodevelopmental policies to ensure that we are targeting the policies that impact most on people’s lives.
In 2018, as has been mentioned, we published an alcohol framework setting out a commitment to increase awareness of FASD and to support improved diagnosis.
Will the minister give way?
Yes.
I am intervening partly to give the minister a minute to take a wee sip of water, but in the light of some of the other discussion that we have had during the debate, does the minister support greater education for clinicians and those working with young people to help identify FASD at the earliest possible opportunity and to raise awareness of some of the symptoms, so that we can see an end to those diagnosed with the wrong neurodevelopmental condition?
I can give you the time back, minister.
I thank Gillian Mackay for that incredibly helpful intervention.
We absolutely know how important it is to provide education and training on FASD and, indeed, to support families and individuals. That is why we fund two key organisations that have both been referenced in members’ speeches.
Additionally, we have committed to introducing the learning, disability, autism and neurodiversity bill, which provides a real opportunity to ensure that the rights of neurodivergent people, including those with FASD, are respected and protected. The final consultation analysis report for the bill has now been published. With nearly 900 responses, the consultation demonstrated the bill’s importance to many people and organisations across Scotland; indeed, it demonstrates the need for change. The programme for government for 2024-25 affirmed our commitment to continue to develop proposals for the LDAN bill and stated that we will publish draft provisions. The bill’s proposals cover many different areas of life, including health and social care, justice and education.
In 2021, the Scottish Government published the national neurodevelopmental specification for children and young people, which sets out seven standards for service providers to ensure that children and young people who have neurodevelopmental profiles with support needs receive support that better meets those needs. Based on the getting it right for every child approach, the specification aims to ensure that children and families receive support and access to services that meet their needs at the earliest opportunity. For many children and young people, such support is likely to be community based and should be quickly and easily accessible.
In that respect, I note the points that Ben Macpherson made about adoptive parents. I also want to highlight the comments that Marie McNair and Gillian Mackay made about organisations in their constituencies. I know that a network of such organisations is working throughout Scotland, and I thank them for the work that they do.
I hope that I have given some reassurance to everybody about the importance of this issue to the Scottish Government and that I have demonstrated the work that is on-going to prevent FASD and to support those with FASD to live their best lives. We are aware that more needs to be done in Scotland, including raising awareness of the issue, and in that respect, I am so grateful to Rona Mackay and everyone else who has spoken in the debate.
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