Fetal Alcohol Spectrum Disorders Awareness Day

– in the Scottish Parliament at on 23 September 2021.

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Photo of Annabelle Ewing Annabelle Ewing Scottish National Party

I remind members of the Covid-related measures that are in place and that face coverings should be worn when members are moving around the chamber and across the Holyrood campus.

The next item of business is a members’ business debate on motion S6M-01089, in the name of Siobhian Brown, on fetal alcohol spectrum disorders awareness day, 9 September. The debate will be concluded without any question being put.

Photo of Siobhian Brown Siobhian Brown Scottish National Party

I thank everyone who supported my motion to recognise international fetal alcohol spectrum disorders awareness day on 9 September, allowing for it to be debated. Fetal alcohol spectrum disorders, commonly known as FASD, deserve national attention and awareness.

In my motion, I pay recognition to the work that is done by Oshay’s, an organisation in my constituency of Ayr that?provides?support, advice and guidance for parents and?carers?of children who are affected by FASD. Oshay’s was founded by Maryellen and Billy McPhail. The McPhails have been fostering for more than 20 years and have looked after more than 50 foster children during that time. Over the years, the McPhail family has been shocked to learn of the prevalence of FASD—in children in care in particular—and about the lack of resources for affected families and foster families. The story of the Oshay’s charity, however, is one that spreads hope: the hope that those with FASD can lead a thriving and fulfilling life with the right support in place.

I will tell you the story of Taylor, Maryellen’s?and Billy’s son, who was given an FASD diagnosis as a baby. At the time, that was quite rare—it came about only because the doctor noted the mother’s alcohol dependence on the baby’s medical notes. Clinicians told the McPhails that Taylor would never walk, talk or sit up. Taylor, supported by Maryellen and Billy, had other ideas and surpassed all those milestones. To cut a long story short, he is now in mainstream education.

Taylor proved, in part, to be the inspiration for the charity. When he was nine years old, he?wrote?a book about an octopus called Oshay. In the story, Oshay the octopus was invited to a party but was worried that his tentacles would get stuck on the slide. All his friends lent him their socks to wear, which meant that Oshay could be just like everyone else, go down the slide and enjoy the party. That story, written by Taylor, shows how we want Scotland to treat those who are like Oshay. The answer is not to try to make the person fit in but to make the surroundings fit the person—and then everyone can enjoy the metaphorical party.

How common is FASD? It is estimated that around 4,500 people in Scotland have Down’s syndrome, around 44,000 have autism and around 37,000 have attention deficit hyperactivity disorder. It is estimated that close to 285,000 people in Scotland could have FASD.

We must look at ways of reducing occurrences of FASD—through education and raising awareness—and of offering resources and support to those who are already affected. Similar to the fantastic work that has been done to make Scotland more autism friendly, I urge the Scottish Government to implement an FASD strategy to address prevention, diagnosis, support, engagement, awareness and training across all sectors: public health, medical, education, social work, criminal justice, the third sector and housing.

Today I will highlight diagnosis, support and prevention. Members will already know that FASD is caused by exposure to alcohol in the womb. Without a fully developed liver, the fetus is unable to filter out the toxins that are passed freely through the placenta into the bloodstream. One in seven babies experience significant alcohol exposure in Scotland. What is not commonly known is the suggestion that 99 per cent of cases of fetal alcohol spectrum disorders are left undiagnosed.

People with FASD experience problems with thinking, speech, social skills, timekeeping and memory. The condition often exists alongside autism, attention deficit hyperactivity disorder and mental health problems. It is not just a brain issue; it can also affect facial features, limbs and height. All those factors together mean that the condition requires sophisticated diagnosis and treatment, with research showing that an early diagnosis can make a massive difference. A 2017 study on doctors across the United Kingdom found that only 31 per cent of general practitioners said that they had had in-depth education on FASD.

It is very welcome that the Scottish Government has been funding the fetal alcohol advisory and support team since 2015. That small team, which is based in Ayrshire, has become the national hub for providing training, research and consultations on FASD. It offers assessments for children and provides support and mediation in schools for parents and carers.

FASD usually comes with overlapping social issues, and 50 per cent of individuals end up in prison, psychiatric hospitals or drug treatment facilities. An FASD diagnosis is 28 times higher in those settings than in the general population. Those with FASD are more likely to experience homelessness, unemployment and dependent living, with such experiences leaving them to face additional issues such as addiction: 35 per cent have drug and alcohol problems, and 23 per cent have received in-patient care for mental illness.

When it comes to ways to support those with FASD, we must consider a multistrand plan of action. That means looking at poverty, domestic violence, mental health and safe and secure housing. The Scottish Government has taken considerable action to raise awareness of the dangers of drinking while pregnant and to train health practitioners on how to educate women. Since 2016, we have increased screening of alcohol intake while pregnant, with midwives being encouraged to record instances of alcohol use on a mother’s health records. I am led to believe, however, that that is not recorded on the baby’s medical record in many cases. That is key to ensuring a correct diagnosis of FASD, especially in the care system, and that means that it should be on the child’s records, not just the mother’s.

About 80 per cent of children in care have FASD, and it can be easy for society to demonise biological mothers. It is important that, when pregnant, the mother feels that she can be honest about her alcohol use. If it is an addiction, it is not easy to stop. We must remove the stigma for those seeking help. We must educate society on the dangers of alcohol to an unborn baby—the ones we know about and the ones we are hearing about today. We must inform mums to be. We must treat people with compassion. Most of all, we need to recognise the support and help that children, young people and adults with FASD need.

Photo of Kaukab Stewart Kaukab Stewart Scottish National Party

First, I thank my colleague Siobhian Brown for leading this debate, and I extend to Alcohol Focus Scotland my gratitude for its work in providing on-going information and support to those who are affected by fetal alcohol spectrum disorder.

Our country’s relationship with alcohol is at times fractious and troubled, and tackling harmful patterns of consumption undoubtedly represents one of the most significant public health challenges that we face today. It can be a difficult and sensitive issue to address, given that we all know people whose lives, families and communities have been impacted by the effects of harmful alcohol use.

Despite that awareness, however, fetal alcohol spectrum disorder is often described simultaneously as the most prevalent and the most invisible neurodevelopmental condition in Scotland. It is often misunderstood and misdiagnosed, and its effects are diverse and can lead to a wide range of both mental and physical issues, including a reduced capacity for learning and understanding behaviours.

As a teacher, I have witnessed at first hand FASD’s limiting nature. For children who are affected by the condition, the already intimidating school environment can be incredibly difficult to navigate. Sadly, developmental problems with social skills and communication and the requirement for additional educational support place these students at greater risk of exclusion and bullying, an experience that they will likely carry for the rest of their lives. The limited knowledge and expertise of teachers at times in managing and accommodating children with FASD represents a further obstacle in the efforts to create a constructive and inclusive learning environment.

Thankfully, as we are here to remind and inform people, FASD is preventable. It is crucial that we promote recognition of the dangers that are attributed to drinking alcohol at any stage of pregnancy and do so in a way that does not seek to penalise or condemn women. Our focus should remain firmly on the education and the health of the population, while taking care not to stigmatise FASD, as that would only deter individuals from seeking the help or treatment they need.

I am therefore pleased that the Scottish Government has remained committed to its 2018 pledge to increase support for the children and families affected. Since 2018, with the provision of over £395,000 to the fetal alcohol advisory and support team, the Government has launched a successful FASD hub, through which essential tiered support services and vital lifelines are offered to members of the public. I also want to highlight the creation of a free FASD learning resource on the NHS Education for Scotland website, which includes valuable guidance for educators as well as helpful resources for parents and carers.

I hope that we can continue to promote and increase awareness of this condition, so that no child is born suffering what are avoidable consequences. I firmly believe that, by championing campaigns such as #NoAlcoholNoRisk and supporting the sustained development and expansion of services designed to help families across Scotland, we can improve our children’s physical and mental wellbeing and provide them with the high quality of life that they deserve.

Photo of Meghan Gallacher Meghan Gallacher Conservative

I commend Siobhian Brown for bringing this important issue to the chamber.

As we have heard, fetal alcohol spectrum disorders can cause children to have a range of issues as a direct result of alcohol consumption during pregnancy. We must continue to raise awareness of the condition to ensure that mothers understand the dangers of drinking while pregnant and the impact that it can have on their unborn child.

I was not aware of FASD until my mid 20s and, as far as I am concerned, education is one of the best ways for people to learn about having a happy, healthy pregnancy. Given that three in every 100 babies in the United Kingdom are affected by FASD and that roughly 45 per cent of pregnancies are unplanned, educating young people might be one way of reducing the number of children born with this condition.

I know that we do not have enough time to discuss the subject in more depth today, but another way of approaching this is to continue to tackle the binge-drinking issue that we have in Scotland. As we know, binge drinking has been exacerbated by the Covid-19 pandemic, causing real concern for health boards, experts and organisations that offer advice on FASD.

Although FASD is completely preventable, Alcohol Focus Scotland and other organisations have suggested that it is a cause for concern, because no amount of alcohol is safe for pregnant women or women who are planning a pregnancy.

I agree with Siobhian Brown and other members that we must do more to support children and adults with FASD. Although there is a wide range of benefits and support networks to help families with the condition, because FASD goes undetected for quite some time, many try to cope without talking to organisations that could assist them. Again, turning to my earlier point about education, if teachers and childcare professionals were trained to spot symptoms of FASD, families might be helped to understand what support is available to them.

During Ms Brown’s opening contribution, she spoke passionately about the area that she represents, the excellent work that is being carried out by the Ayr-based Oshay’s FASD organisation, and told the wonderful story about Taylor and Oshay the octopus, which gave us an insight into people who live with FASD. That is why it is so important that we continue to talk about the condition.

I will continue the narrative by talking about the work that NHS Lanarkshire carried out in the run-up to FASD awareness day, which took place on 9 September. As part of its campaign, NHS Lanarkshire released figures from Alcohol Focus Scotland, which revealed that around 29 per cent of adults were drinking more than before Covid-19 restrictions were introduced. In addition, younger adults were more likely to report an increase in the frequency and quantity of alcohol consumed.

NHS Lanarkshire took to social media to raise awareness, but also to target those who were more likely to become pregnant or who were trying to conceive, and provided details of who to contact for support. Although that campaign was positively received, more work needs to be done to make the neurodevelopmental condition better known.

Various groups, including Alcohol Focus Scotland, have called on the Scottish Government to introduce mandatory alcohol labelling, to increase awareness of the risks that are associated with drinking. Most of the warning labels on bottles are not satisfactory at present, with many having only a small picture with no information or explanation of why people should not drink while pregnant.

Alcohol Focus Scotland argues that providing helpful messaging on labels will provide information and advice at the point of purchase, which will help women make a choice that is healthy for their unborn child.

Once again, I thank Siobhian Brown for bringing the issue to the chamber and I hope that, by raising awareness, more can be done to support pregnant women, and families who live with FASD.

Photo of Paul O'Kane Paul O'Kane Labour

I too thank Siobhian Brown for bringing this important debate to the chamber to mark international FASD awareness day which, as we have heard, fell on 9 September. It is vital that the Parliament has an opportunity to talk about the issue, raise awareness and call for continued action to support interventions, reduce the prevalence and impact of FASD in Scotland and support those who live with it.

As colleagues have done, I thank Alcohol Focus Scotland for its informative briefing ahead of the debate and for its continued work to raise awareness and campaign for solutions.

As we have already heard, it has been estimated that around 3.2 per cent of Scotland’s young people live with FASD and, as Siobhian Brown said, when we compare that to other conditions such as autism, the figure is quite stark. A study in my region suggests that prevalence is higher than previously thought, with as many as 40 per cent of babies showing signs of exposure to alcohol in the second trimester and one in seven showing signs of exposure to high and frequent consumption.

People who have FASD are affected throughout their lives: 90 per cent experience mental health problems, 79 per cent experience unemployment, 60 per cent have disrupted school experiences, 43 per cent have their education disrupted, 35 per cent have been imprisoned as adolescents, and 23 per cent have needed in-patient psychiatric care. Life expectancy for people with FASD is tragically short, at just 34 years, with many deaths attributed to addiction, misadventure or suicide.

Those stark figures point to the need for renewed action. It is incumbent on us all to act, for example, on the calls by Alcohol Focus Scotland and other bodies to move to a mandatory system of labelling on alcohol, which Meghan Gallacher alluded to in her remarks. Those warnings have to be clear, because 28 per cent—over a quarter—of women in the UK are unaware of the current health advice from chief medical officers that no amount of alcohol is safe to consume during pregnancy. More must be done to compel alcohol companies to label products appropriately, so that the risks are made clear by health information and advice at the point of purchase.

It is important that we do not demonise women or stigmatise FASD, as Kaukab Stewart alluded to. Interventions such as labelling must sit alongside better community support and education, particularly during pregnancy. We know the difference that a strong, supportive relationship with a trusted professional can make, and I acknowledge the work of GPs, nurses, midwives and social workers in this area. I hope that the minister will pick up on some of those areas in closing.

As I draw my remarks to a close, I would like to call for better support for those who are living with FASD, particularly those who are young and care-experienced, because we know the challenges that are experienced particularly by that group. If we seek to keep the promise, which we all want to do, we must deliver.

Adoption UK, through its FASD hub in Scotland, has made clear the need to improve diagnosis and support, sitting alongside work on prevention. It calls for a published, FASD-specific strategy that covers awareness raising; diagnosis and support services; and individual plans and lifelong support for all children who are diagnosed with FASD, which address home life, education, mental health and access-to-work support and resources. It also calls for individuals who have a diagnosis of FASD to be given a multidisciplinary support plan that acknowledges their needs and those of their parents, carers and wider family, and includes access to relevant and required support services.

We must continue to raise awareness of FASD and do all that we can to support prevention, diagnosis and support, in order to save and improve life.

The Deputy Presiding Officer:

I call Rona Mackay, to be followed by Brian Whittle. He will be the last speaker before the minister winds up.

Photo of Rona Mackay Rona Mackay Scottish National Party

I thank my colleague Siobhian Brown for bringing this important debate to the chamber so that we recognise international FASD awareness day, and for highlighting the great work that is being done in her constituency. It is my pleasure to speak in the debate.

As Siobhian said, an estimated 285,000 children, young people and adults throughout Scotland could have fetal alcohol spectrum disorders, which are lifelong and life-changing neurodelop—I mean neurodevelopmental conditions. Amazingly, however, less than 1 per cent of them have ever been formally diagnosed and properly supported. Even more startling is the reality that FASD is preventable but, sadly, is not often prevented.

Around seven years ago, I was a member of a children’s panel in the east end of Glasgow. I was fortunate to attend a lecture by—I think—Dr Jonathan Sher of the Queen’s Nursing Institute Scotland. I apologise if I have confused him with someone else, but I am pretty sure that it was Dr Sher. His knowledge on the subject is beyond compare. He told panel members that many of the children who were referred to us would be suffering from FASD. Much of their behaviour and many of their issues related to having the condition, but many of them were undiagnosed. That made immediate sense to me, and it shone a light on many of the young people whom we saw and the day-to-day difficulties that they faced due to having been exposed to alcohol in the womb.

I also remember that he spoke about the advice that was given to pregnant women at the time, which was that they limit their alcohol intake. He said, however, that the only way to be sure that a child would not be affected by FASD is to avoid drinking entirely, because every person’s body processes alcohol differently. It might have a low impact on one person but be devastating for another. His message was that the only way to avoid giving a baby FASD is to drink no alcohol at all.

In Scotland, we want to give every child the best start in life, and our policies reflect that. However, some children are denied that best start before they are even born. 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, and it is the most common but unrecognised neurodevelopmental condition in Scotland. It can cause learning disabilities, speech and language difficulties and many other issues, which members have outlined today.

Early diagnosis and support for people with FASD is crucial to avoid the range of issues that they commonly encounter. It is estimated that 90 per cent of those who are affected experience mental health problems in later life. A large number experience unemployment and imprisonment, and many need in-patient psychiatric care.

Last November, the Scottish Government and NHS Education for Scotland launched an excellent FASD e-learning resource that is accessible to anyone. It explains what FASD is, how to prevent it and what support is available.

In 2017, Adoption UK conducted a survey of nearly 3,000 adopters, and looked at a range of issues. It reported that 70 per cent of respondents said that they were not warned when they adopted that their child could be at risk of having FASD. Furthermore, 85 per cent have not been told since they adopted that their child might have FASD and 35 per cent have considered that their child might have FASD.

The survey reported that 55 per cent of children waited two years or longer for their FASD 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. As other members have said, Adoption UK recommends improved diagnosis and improved support for people who are living with FASD through the introduction of a dedicated multiyear national strategy for treatment and prevention, combined with increased awareness raising of the risks that are associated with drinking during pregnancy.

In conclusion, I say that FASD is a condition that is entirely preventable. Prevention is not about stigmatising or shaming women; it just requires women not to drink for the entirety of their pregnancy. In what we are facing today, with the scourge of the global pandemic still prevalent, surely that is not too much to ask, in order to ensure that our children get the best start in life.

Photo of Brian Whittle Brian Whittle Conservative

Thank you, Presiding Officer, for letting me sneak into the debate at the last minute. I thank Siobhian Brown for bringing this important debate to the chamber. She highlighted the impacts that a diagnosis of FASD can have on a person. They include increased likelihood of custodial sentences, early death—which Paul O’Kane talked about—homelessness, unemployment and a higher level of mental illness

I have a personal interest in the condition because I was approached by a couple of foster parents to work with their adopted son and daughter, both of whom have had diagnoses of FASD. I have such fondness for those parents, and respect for what they do in taking on children who have the condition.

I want to offer a positive take on the subject and talk about the impact of giving children who have the condition the opportunity to participate in the benefits of sport. Members knew that I would get sport in there, somewhere.

I have worked with one young man for several years. He is nothing but a ball of fast-twitch muscle fibres and his outlet happens to be sport. The question is this: if he did not have that outlet, where would that energy go? If you met the young man, you would say that he was very active. He is very energetic and he laughs and smiles a lot, but he has an outlet. The benefits of sport, including self-discipline and the structure that it brings to his life, are immense. He has become an international athlete and has had the opportunity to travel, which has helped him to develop as an individual. He is now studying at college, which tells its own story, which is very similar to the story that Siobhian Brown told.

However, Covid has had a specific impact on people with such conditions, because that disciplined structure and support has been unavailable. When I managed to get back to seeing my athletes, I saw that the impact on him was much more marked than it was on the rest of the squad. He obviously had a love of doughnuts—that is how I would like to put it. That is something that we need to consider.

I am, as you know, a big believer in giving kids the opportunity to participate. It does not have to be in sport; it can be music, art, drama or whatever. Covid has had a big impact on vulnerable kids while they have not been able to access such opportunities.

The system needs to consider how to maintain support from childhood to adulthood in fostering situations, because support drops off dramatically when children get to a certain age.

FASD is a preventable condition; as Siobhian Brown said, we need to consider how to prevent it, in the first instance. It is a health issue, and we need to start with the consideration that Scotland has an unhealthy relationship with alcohol.

I once again thank Siobhian Brown for bringing the debate to the chamber, and I thank the Deputy Presiding Officer for letting me sneak in.

Photo of Kevin Stewart Kevin Stewart Scottish National Party

First, I pay tribute to Siobhian Brown for bringing the motion to the chamber. I thank members for their consensual approach to the debate on this extremely important issue, and pay tribute to the McPhails and their work, which Ms Brown described today. Taylor’s book on Oshay the octopus will now definitely have to be on my reading list, and Ms Brown can maybe help me source a copy of it.

Fetal alcohol spectrum disorder or FASD, which is caused, as members have said, by prenatal alcohol exposure, is one of the most common neurodevelopmental conditions in Scotland, but it is also one of the lesser-known ones. It is in respect of those simple facts that I find myself whole-heartedly in agreement with today’s motion. We must all do more to promote awareness of the dangers of alcohol consumption during pregnancy but also to support those with a diagnosis of FASD. We must do our level best to destigmatise the situation of some of the folks who have alcohol problems, and to get them to the right help. We should also be supportive of the pregnant women in our lives, whether they be partners, family members or friends.

No safe amount of alcohol can be consumed during pregnancy. The advice from the chief medical officer for Scotland is clear—“no alcohol, no risk”—and the Scottish Government has set up a range of work to help support that message. Our 2018 alcohol framework demonstrates that we are committed to improved health messaging on alcohol. We have committed to press alcohol producers to put health information on physical product and packaging labels, and we will be prepared to consider a mandatory approach in Scotland if progress is not made. That action will include consideration of pregnancy warning labels.

Positive progress has, however, been made as alcohol consumption in Scotland in 2020 remained at its lowest level since 1994, and reduced levels of alcohol consumption across society can lead to a reduced prevalence of FASD.

Prevention and early intervention remain vital in respect of reducing the impact of FASD. However, it is also vital that children and young people with a diagnosis can access the right support with regard to health, social care or even sport, as Mr Whittle mentioned.

To best ensure support to those whom FASD impacts, we have funded the fetal alcohol advisory and support team since 2018 to deliver training nationally, which improves the knowledge of professionals who work with individuals with FASD, and the Royal College of General Practitioners to produce an e-learning module on FASD for GPs and the wider healthcare community in primary care.

Furthermore, we provided Adoption UK Scotland with over £526,000 since June 2019 to establish FASD hub Scotland, which provides a foundation on which awareness of FASD can be further promoted, as well as a dedicated helpline, and support and advice to parents, carers and children whom FASD has impacted. It is notable that, on FASD awareness day earlier this month, Adoption UK called on Governments across the UK to replicate the success of FASD hub Scotland.

In addition to our FASD-specific offerings, the Scottish Government has published principles and standards of care through a new national neurodevelopmental specification for children and young people. The new specification aims to ensure that children with neurovep—I am doing a Rona here—neurodevelopmental profiles, including those with FASD, receive more support than is currently available.

That offering will sit alongside the child and adolescent mental health service—CAMHS—and will benefit from the recently announced £10.83 million of funding to support service provision through phase 2 of our mental health recovery and renewal fund. Specifically, £5.25 million of that funding is being allocated to NHS boards to build professional capacity to support children and young people with neurodevelopmental support needs.

Furthermore, we are at an early stage in relation to the wider autism, learning disabilities and neurodiversity bill that we committed to in the latest programme for government, with part of that being the creation of a commissioner. We are putting resources in place to allow us to start consulting on what people would like to see from it. The bill has arisen from discussions around autism and learning disabilities in particular, but consultation on the bill will include other neurodevelopmental support issues such as FASD. As with every piece of proposed legislation, working with individuals with lived experience, and with organisations, will be at its heart. I encourage interested parties to get involved in those discussions when we begin them early next year.

Our proposal to develop a national care service also provides significant potential to better ensure that those who are impacted by FASD can access the social care support that they need and deserve.

I record my thanks for the opportunity to take part in the debate and for the thoughtful contributions of all colleagues across the Parliament. Although FASD remains a significant lifelong condition affecting an individual’s mental and physical health, it remains preventable, and early diagnosis and tailored interventions can improve outcomes for children.

In Scotland, we have a solid foundation on which to build our level of support in respect of FASD, through work with Oshay’s and other organisations like it. The Government remains committed to continuing to take forward this important area of work.

I thank Ms Brown once again for bringing this important debate to the chamber.

13:28 Meeting suspended.

14:30 On resuming—