Foetal Alcohol Spectrum Disorder

Lyn Brown Excerpts

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.

--- Later in debate ---

[Steve Brine]

The hon. Gentleman can certainly encourage me in that regard, and I will look at that in terms of the prevention paper. We would have to be guided by the clinicians and the CCGs on where they would see the greatest need for that provision to be. That is very much the spirit of the long-term plan, but it is not ideal that that centre is the only one. Surrey is near my constituency, but a long way from Sefton.

Finally, I wish to touch on the wider departmental policy engagement in this area. Our deputy chief medical officer, Gina Radford, has held roundtable meetings on the subject, which considered the future development of policy to improve prevention and support. I do not know whether the hon. Gentleman has been involved in that. These meetings were attended by experts in the field and, crucially, FASD service users. I thank NOFAS UK—the National Organisation for Foetal Alcohol Syndrome-UK—which has been helpful in supporting and contributing to these meetings, along with other charities working in this field. We are also providing wider support to children and families affected by alcohol misuse, through the children of alcoholic dependant parents programme, which I am proud of. It was one of the first thing I got to announce in this job. The previous Secretary of State working as one with the current shadow Secretary of State had managed to do this, which shows that cross-party working can happen in this Parliament between the two main parties—and there were no preconditions to it.

[Lyn Brown]

That is a career-limiting comment.

[Steve Brine]

The preconditions did not come from this side; I filled it in nicely. Through that programme, we are investing some £6 million over three years to support a vulnerable group, as part of our new alcohol strategy.

The Government take alcohol concerns, across the board, very seriously and even more so when they relate to pregnancy. We are making progress—I hope—to prevent future FASD cases, and trying to change the landscape on prevention and treatment for those affected. But there is not an ounce of complacency in us—there certainly is not in me. We will continue to work towards improvements in the area. I can promise the hon. Gentleman that and I know, given his consistent work in this space, he will make sure he holds us to that and continues to raise awareness of the dangers of drinking alcohol during pregnancy in this House and outside. I thank him for that.

Question put and agreed to.