Foetal Alcohol Spectrum Disorder

Debate between Bill Esterson and Lyn Brown

Thursday 17th January 2019 Commons Chamber

[Bill Esterson (Sefton Central) (Lab)]

It is a shame that the Children’s Minister, the hon. Member for Stratford-on-Avon (Nadhim Zahawi), could not stay for the debate, because I think that it follows on very naturally from the last one.

“Babies being born brain-damaged by alcohol is a national emergency”. So ran the title of a piece in today’s edition of The Times about this debate. It is justified by a recent study conducted by Bristol University, which suggests that some 79% of women say that they drank alcohol while pregnant, and that between 6% and 17% of the 14,000 or so children covered by the study have foetal alcohol spectrum disorders. Scaled up—and this is why the term “national emergency” is not misplaced—that gives a figure of between 42,000 and 120,000 children a year.

So what is foetal alcohol spectrum disorder? It is an umbrella term for a range of effects that prenatal alcohol exposure can have on an individual. FASD is the commonest non-genetic cause of learning disability in the United Kingdom, yet it is entirely preventable. It lasts a lifetime: this is not just about babies. What does it look like? People often think that they understand the syndrome. They say to me, “Yeah, we know about that. It is a really bad problem when women have drunk heavily during pregnancy.” It is true that there are often facial and physical features characteristic of children with FASD, but, relatively speaking, that applies to a very small proportion of the wider spectrum.

The impact on the brain, although usually not immediately obvious from the outside, affects language, memory, attention, processing and understanding, and creates emotional, behavioural and learning difficulties. Children often struggle with complex concepts such as time, metaphor or consequences. Rewards and sanctions mean very little to children with this kind of brain damage, and consequences do not mean very much either.

A constituent of mine adopted two children. One of them, who is 16, had no idea of the consequences of his actions, and got into trouble. He has no idea that he has done anything wrong—the idea is meaningless to him—but because of a wider lack of understanding, including a lack of understanding in our criminal justice system, he very nearly went to prison. He was spared that, more by luck than by judgment. His victims did not understand—for good reason: why would they—and I think that there was very little understanding in the system.

A 17-year-old who gave evidence to the all-party parliamentary group on foetal alcohol spectrum disorders, which I chair, described the effect on her emotions. When she gets angry, she has no control whatsoever. I know that is true of many people, but controlling anger can be harder for those with this kind of brain damage. She described to our all-party group how she sees herself from the outside, as somebody else almost; it is a sort of out-of-body experience, and she has no control over it. I have heard that repeated by a number of children and young people affected by FASD, including my own adopted daughter; I have two adopted children, both of whom are affected by this, which is why I have become aware of it and taken so much interest in it.

There are implications for society as well as individuals, because this disorder does not go away when children become adults. In Canada, they have estimated that half of their prison population has FASD; I wonder whether the situation is very different here. FASD affects people’s ability to get qualifications, and I wonder how many of those who are sleeping rough or are otherwise homeless have FASD. Returning to the point I made about not understanding time or consequences, I wonder how many people who are sanctioned for not attending appointments with the Department for Work and Pensions have FASD. There is likely also to be a strong link between FASD and having difficulties with holding down a job or maintaining a stable relationship.

In the United States, a study last year estimated an annual personal cost of $24,000, before considering the cost to the criminal justice system. That is a relatively small element of the cost for some of the people with FASD in the United States. For years in the United States they have described people with FASD as million-dollar babies, often multi-million dollar babies, because of the long-term societal costs as well as that to the individual.

We have just had a very good debate on children’s social care, and I wish I had been able to take part instead of just listening to it. Population evidence to the all-party group suggested—this is a relatively low estimate —that at least a quarter of the children in the care system are affected by FASD. I have heard other adopters and people who run adoption agencies describing adoption as a family-finding service for children with FASD, because it is so common among the adopted children population. May I add to the tribute paid in the last debate to adopters, foster carers and all professionals who do what they can to support the children, young people and, indeed, adults who continue to face the challenges of FASD?

What am I asking for? I am asking for action on prevention and diagnosis, and action to cut the numbers, and for a sea change in our approach and our building of awareness among the population, including and especially among health professionals.

[Lyn Brown (West Ham) (Lab)]

My hon. Friend and I have talked about this issue a number of times, and I commend him for taking it forward. I was interested to read that twins who are exposed to exactly the same amount of alcohol in the womb can have very different outcomes. It is a very complicated situation. Genetic factors are involved and we have no way of predicting in advance what the risks are. Does my hon. Friend agree that we need to understand this better, we are learning all the time, and we cannot identify anything that would make drinking safe during pregnancy?

[Bill Esterson]

I thank my hon. Friend for her intervention which prompts me to cite a recent study from the Washington State University. Its foetal alcohol syndrome diagnostic and prevention network has identified that foetuses can experience vastly different FASD outcomes despite being exposed to identical amounts of alcohol—which is what happens with twins. There is no way of predicting what will happen, and its conclusion, which I am glad to see the chief medical officer now accepts, is that the only safe amount to drink is “none at all”.

I am asking that the chief medical officer’s advice and guidance, which has now been accepted by the National Institute for Health and Care Excellence as well, be given much greater prominence and that we build awareness so that everyone understands it, especially, but not exclusively, health professionals. I am asking that we have a proper study of incidence so that we need not rely on the limited evidence of the Bristol University study. It was only able to make rough estimates, given the nature of its research, but if it is between 6% and 17%, it really does need that intervention and prevalence study.

We have to build greater understanding among health professionals and professionals right across the public sector. I have mentioned support as well. There needs to be greater support for those living with FASD—both those suffering from it and those caring for them— and those in education and elsewhere who are looking after them.

[Bill Esterson]

The hon. Gentleman is absolutely right to draw the comparison with smoking. There is no way anybody does not understand that you do not smoke when you are pregnant. We need the same cultural understanding of the effect of alcohol.

I am very pleased that the chief medical officer listened to the all-party group’s advice in the inquiry that we held when we published our report at the end of 2015 and that the guidance is now right and advises women not to drink at all if they are pregnant or planning to conceive. NICE caught up last year, but many people, including some health professionals, still regard the previous guidance as relevant. There is a question mark for many. They think, “If the advice previously was one or two drinks, maybe it’s still okay”. It is not, and we need to make that clear.

The country has a history in this respect going back many years. A glass of Guinness used to be thought a good idea for pregnant women because of the iron.

[Lyn Brown]

And red wine.

[Bill Esterson]

My hon. Friend says red wine too.

I described some of the symptoms to a constituent of mine in his 60s, and he said, “That’s me”. That will have been a result of the culture and the advice about it being okay to drink. We need a sea change in that culture, which is so deep seated, in order to end the misapprehension. A baby’s liver matures later in pregnancy than other parts of the body and so cannot process alcohol. When mum drinks, so does the baby. People have to understand this. The problem is that much of the damage is likely to be done early in pregnancy. There is a video on the internet of an embryo that is introduced to a drop of alcohol. It stops moving for two hours. Goodness knows what damage is done in that time by one small drop of alcohol. People do not understand the risks they are taking. In that regard, the intervention from the hon. Member for East Worthing and Shoreham (Tim Loughton) was very welcome.

Nicola Blackwood, in a Westminster Hall debate on 2 February 2017, talked about improvements to industry labelling, and guidelines were issued in March 2017, but I am afraid it simply has not changed. It is not good enough. The labelling is not clear. It is still small. People do not understand it. We need to improve on that. That was a subject of my ten-minute rule Bill in 2015. Please can we have improvements there.

Nicola Blackwood also said in that debate:

“Health professionals are supposed to discuss it with pregnant women”.

We need to ensure that health professionals put much more emphasis on the issue and to consider the impact across the wider population. There should be greater understanding and awareness in the drinks industry. The industry makes great progress some of the time, but where are the notices in our pubs and restaurants telling people about the dangers of FASD? I want to know what happened to what the then Minister said in that debate, because we have not seen much progress. I think it was the Minister present, the Under-Secretary of State for Health and Social Care, the hon. Member for Winchester (Steve Brine), who responded to my hon. Friend the Member for Swansea East (Carolyn Harris) just a few weeks ago about the duties of midwives and other professionals. It is great that we have the duties, but what are the outcomes? That is something that needs to change.

I want to hear the Minister’s response, but I have one or two more comments. Sadly, women sometimes consume alcohol before they know that they are pregnant, and damage may be done during that early period, but others are unwilling or unable to stop drinking alcohol while pregnant. The damage to babies, the impact on families, the long-term effect, the direct costs to the public purse, and the lost productivity from FASD sufferers and carers are real problems for this country. It is a hidden epidemic, and it is time that it was out in the open. It is time that we had the full information. I said that I want prevention and greater support, so let us get the advice out there. I am sure that the Minister can make a lot of progress in that regard.

This is too big just for good intentions. Those suffering from FASD need firm commitments and action. This country has the fourth-highest prevalence of FASD in the world. Canada has invested 1.1 million Canadian dollars just for indigenous children who suffer from FASD. We have money going into dealing with alcohol-related problems, but not directly into FASD, so perhaps the Minister will take that away and consider it. FASD is an entirely preventable problem, and it is the biggest cause of disability in the UK. Minister, your move.

Education

Debate between Bill Esterson and Lyn Brown

Tuesday 21st December 2010 Commons Chamber

[Bill Esterson]

Young carers are one of a number of vulnerable groups for whom EMA is especially important, and its loss would hit them and those who depend on them particularly hard. I hope that the Minister will consider that point among others.

My constituent told me that some of the means by which students will support themselves might be less than legal. He said that that was

“an opinion that I have heard in person on more than one occasion from students themselves”.

I have also heard similar comments about the potential of drug dealing as a source of income for students who lose EMA. I thought his was a balanced and responsible view of the impact of EMA from a member of staff with much experience.

The principal of Hugh Baird college in south Sefton, Jette Burford, also wrote to me saying that 84% of young people at the college currently receive EMA; that there is a clear indication that it has become a key part of the family income for those families; and that its discontinuation is very likely to impact on the participation rate locally. Ms Burford mentioned both the impact of losing the EMA on participation and attainment, and the fact that many students depend on it for help with their transport. When she wrote to me she did not know that Sefton students were likely to lose their free travel passes because Merseytravel has had its budget cut by two thirds.

EMA is essential for many students from low and middle-income families when it comes to travel, books, equipment and food, and its loss will make it very difficult for students to continue to study. EMA is a means-tested allowance of between £10 and £30 per week. Some 635,000 learners received at least one EMA payment in 2009-10, and about 80% of those received the full £30. That means that the people receiving the £30 come from low-income families on less than £20,800 per year. The loss of EMA for students from such low-income households will create a big hole in family incomes, which college principals have commented on.

EMA was introduced by the previous Labour Government to help with the cost of books, travel and equipment, and payments are made on the condition that students attend classes regularly. The evidence from colleges is that the incentive to turn up on time has worked well, and the evidence in Merseyside is that those on EMA outperform by 7% those who are not in receipt of it. Research by the Institute for Fiscal Studies gives a similar result.

The Department for Education is stopping new EMA at the end of this month, before it has alternative arrangements in place. The Department plans to stop paying the EMA in July 2011 to existing 16 to 18-year-old students who will be halfway through their courses. That means that EMA will be completely gone by July 2011—an unseemly rush. EMA has been widely credited with helping to create a big increase in the number of young people going on to college in the last seven years. The IFS revealed that EMA increased the proportion of 16-year-olds in full-time education by 4% and the proportion of 17-year-olds in full-time education by 7%.

[Lyn Brown (West Ham) (Lab)]

I am sure that my hon. Friend is aware that Newham sixth-form college in my constituency has the largest percentage of students receiving EMA. When I spoke to those at the college last week, they informed me that, in order to stay on at school, many students just handed the £30 a week to their families.

[Bill Esterson]

My hon. Friend makes an extremely important point about the impact on family incomes, not just on the incomes of individual students.

The Association of Colleges continues to make it clear to Ministers and MPs that it thinks that the decision to abolish EMA will have a detrimental effect on recruitment, retention and achievement among 16 to 18-year-olds. A number of trade unions are also worried that axing EMA will mean that colleges are hit by further funding cuts—cuts that will put even more college jobs at risk. The coalition argues that 90% of the cost of EMA is “dead-weight”, but as my hon. Friend the Member for Liverpool, Wavertree said, that is an offensive statement to many students. It implies that students would have gone on to study without EMA. That claim does not stand up to scrutiny. Research by 157 large colleges and other, smaller colleges shows that students who receive the EMA have better attendance records and are more likely to complete courses than wealthier students who are not eligible for support. That research was published in The Times Educational Supplement on 3 December. Despite coming from the poorest families and, in some cases, having low qualifications, EMA students miss fewer classes and are more likely to stay in education than wealthier students. The IFS has confirmed that the costs of EMA are completely offset by the benefits, even taking into account the so-called “dead-weight” effect.

EMA has been a big success for students and the economy. It has improved the life chances of many, from low or middle-income families. EMA has improved this country’s skills base, because of the improved results among students receiving it, and has increased access to university for many, many students. The case for abolition is flawed, as it will see a cut in attendance that will not be addressed by the enhanced learner fund. As one college principal said to me, there is no way of knowing which students would stop attending and which would carry on if EMA was withdrawn. A review of EMA would be one thing; its abolition quite another. The coalition needs to withdraw its plans and it should continue with the widespread support for our young people that EMA promotes.