Foetal Alcohol Spectrum Disorder

Bill Esterson 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.

[Tim Loughton (East Worthing and Shoreham) (Con)]

I commend the hon. Gentleman for all the work he has done raising the profile of this condition. He knows I support him through the all-party group, and he knows of the experiences I have had with children’s homes in Denmark, which very much pioneered the work here, because of the alcohol problems among residents of Greenland and others. He is absolutely right that many of our children in the care system are directly affected by this. Does he agree that we have to get much better at giving clear advice, as we now do on smoking and its impact on lungs? We need a similar campaign to make absolutely clear to women exactly what the risks are to their unborn children if they continue to drink, as many of them will do.

[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.

[The Parliamentary Under-Secretary of State for Health and Social Care (Steve Brine)]

Nobody has ever handed over to me that way before, but I like it. I was just saying to the Whip on duty that I should congratulate the hon. Member for Sefton Central (Bill Esterson) not just on getting this debate, but on his consistent record of campaigning in this area over many years. I am sorry that that came about due to bad personal experience, but I hope that his two adoptive daughters are okay and are proudly watching him do his work in the House tonight.

I thank the hon. Gentleman for all his work to raise awareness of the condition through the all-party parliamentary group on foetal alcohol spectrum disorders. I chaired many APPGs when I was on the Back Benches, and I always say—I make no apologies for repeating it—that so much good work in this House goes on in APPGs. There is so much expertise, and they do not get enough awareness in the public or in this House, but they should. The hon. Gentleman has certainly helped with that tonight.

It is true that we do not know enough about the extent of FASD. The recent Bristol screening tool study suggests that between 6% and 17% of people in the general population could be suffering from FASD, but I suspect that that is an underestimation. The study is an important contribution but, even as its authors acknowledge, there are limitations to the data, and its prevalence estimates should be treated with caution. There is no question that the hon. Gentleman is right that more needs to be done to clarify the true prevalence of FASD, and the Department will consider future research in this area—I take the hon. Gentleman’s challenge. We do know that the impact of FASD can be severe, with the lifelong physical, behavioural and/or cognitive disabilities that he mentioned. Unfortunately, there is no cure, but we know that early intervention can help improve a child’s development and help them to lead an improved life. The hon. Gentleman made well the point that FASD does not just affect babies.

Touching on prevention, the hon. Gentleman will know that it is one of the key priorities of the new Secretary of State for Health and Social Care, which is music to my ears as the Minister for Public Health, Primary Care and Prevention. The hon. Gentleman is right that FASD is an entirely preventable condition, so that makes my ears prick. Prevention is vital, and the all-party parliamentary group has made it the fulcrum of its work to raise awareness of the dangers of drinking in pregnancy in order to protect future generations from an entirely preventable condition.

First and foremost, we need to be absolutely clear to women about the facts on alcohol so that they can make well-informed decisions. That applies both before they become pregnant and when they come into contact with the health system—in primary care we call it making every contact count. The UK chief medical officer, Professor Dame Sally Davies, with whom I work closely, published low-risk drinking guidelines in 2016, which provide very clear advice to women not to drink alcohol if they are planning for pregnancy or if they are pregnant. Public Health England, for which I have ministerial responsibility, reinforces that advice through its public health messaging, both global and targeted.

We have been very clear with the alcohol industry that we expect the guidelines to be reflected on the labelling of all alcoholic products, and we have given the industry until September 2019 to ensure that its labelling reflects the updated guidelines. The industry knows that I will be watching it like a hawk.

There is also central advice through NHS.uk and other media platforms such as our Start4Life branding to inform women of the dangers of drinking during pregnancy. Of course, all upper-tier local authorities in England are now public health authorities. As part of their local public health duties, they rightly continue to educate the public about the dangers of alcohol during pregnancy, and it is encouraging to hear about initiatives such as “Be your baby’s hero, keep alcohol to zero,” which is one of my particular favourites. In Blackpool, of all places, areas of high alcohol use in pregnancy are being targeted to stop future cases of FASD. Be your baby’s hero, keep alcohol to zero—I just like saying it.

Once women are pregnant, they generally come into contact with health services frequently, which gives many opportunities for healthcare professionals to give advice on alcohol. As I mentioned at Health and Social Care questions this week, there are many campaigns on diet and nutrition, and health professionals are very aware of the dangers of drinking. Cancer Research UK has been helpful on this issue, and it is very aware of the dangers of drinking alcohol during pregnancy. The key thing is that pregnant women are given consistent messages, delivered in a supportive, non-judgmental way. The same goes for obesity, another area for which I am responsible. Messages about being overweight should be delivered in a supportive way and alongside a call to action, and many primary care professionals find that difficult, which I understand. It is easy for us to say, “Well, they should just mention it,” but it is not quite so easy.

Midwives and health visitors have a central role in providing clear, consistent advice and early identification and support, and they are well equipped to do it supportively. We are reinforcing that role through a number of strategies. Through the maternity transformation programme, the Department is working with NHS England, Public Health England, the Royal Colleges and a range of charities such as Sands, the stillbirth and neonatal death charity. The House will be well aware of Sands, which does such good work to promote safer maternity services. This programme covers a range of initiatives, which include raising awareness of the known risk factors among pregnant women and health professionals, as the hon. Gentleman has asked for. This will ensure that women receive consistent, supportive advice on how to minimise the risk of stillbirth, including the importance of healthy eating and of not smoking—I am responsible for the tobacco control plan—or drinking alcohol during pregnancy.

The National Institute for Health and Care Excellence has updated its guidelines to reflect the CMO’s advice not to drink during pregnancy. The Department will continue to work with the Royal Colleges—I was with the head of the Academy of Medical Royal Colleges last night—and various other regulatory bodies to raise the profile of the CMO’s guidelines and to recommend that they include those guidelines within their training, which the hon. Gentleman has consistently asked for.

[Bill Esterson]

I appreciate the tone and content of the Minister’s response so far. I neglected to ask him about the alcohol strategy. Will he say a few words about his intentions to include action on FASD in that strategy? That would be an extremely important and welcome step for those interested in this subject.

[Steve Brine]

I do not directly own the alcohol strategy, but obviously I am involved in it. I take the hon. Gentleman’s challenge on board, and maybe we can discuss it further. I know he has stuff he wants to feed into the strategy—he has produced it through the all-party parliamentary group—so perhaps we can discuss it further. I can then discuss it with my ministerial colleagues in the Home Office. It would make absolute sense to do so as part of the strategy, and I suggest linking it to our Green Paper on prevention, which we will be bringing out this year. His question is spot on.

I will now touch on services for affected families. We know that FASD can have a huge impact on the early years development of children and on their life chances, and the hon. Gentleman gave a number of good examples. We also know that early intervention services in this area, as in every area, can help to reduce some of the effects and, therefore, the secondary disabilities that come as a result. The responsibility for commissioning services in this space lies with the clinical commissioning groups in England, working together across all different sectors of the local health economy. We have heard of cases of long waiting times for a diagnosis. My Department will consider how we can improve access to these services and a diagnostic pathway, but we also need to learn from best practice. The Tameside and Glossop Integrated Care NHS Foundation Trust has developed the maternity alcohol management algorithm pathway—why can people not come up with something snappier, like that first one? It has introduced screening and awareness of FASD, enabling what we think is effective early intervention. Just as the long-term plan gives different examples on smoking, with the Canada example on challenging smoking rates among pregnant women, I am interested in the best practice ideas and that trust has a lot to bring in this space. The Surrey and Borders Partnership NHS Foundation Trust has a specialist centre, although sadly it is the only one in England. The trust provides a comprehensive and rapid diagnostic pathway for those with FASD and it has a lot to share from its journey and with its ideas for service delivery, and on the success it has had.

[Bill Esterson]

The Minister mentions Surrey and Borders, and I have had significant interaction with Dr Raja Mukherjee, the specialist who runs that centre. I am glad the Minister acknowledged that it is the only one in the country. May I encourage him to intervene to make sure we have such centres right across the country, as that would make a massive difference?

[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.