Foetal Alcohol Syndrome

Luciana Berger Excerpts

Tuesday 14th October 2014 Westminster Hall

[Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship, Mr Turner. I congratulate my hon. Friend the Member for Sefton Central (Bill Esterson) on securing this debate and on his powerful speech. I am delighted that hon. Members have had the opportunity to debate an issue that is often overlooked.

I pay tribute to those organisations that continue to campaign tirelessly on this issue. We have heard a number mentioned today, but they are worth reiterating: the FASD Trust, NOFAS UK, Alcohol Concern and Drink Wise North West, which has engaged with me in my role as a constituency MP. We have also heard a lot about the former Children’s Commissioner, Sir Al Aynsley-Green, who is the incoming president of the BMA, and Lord Parry Mitchell, who have both done significant work on raising awareness of the issue.

I recently had the privilege of joining a conference organised by Drink Wise North West on the issue, where I heard not only about the vital work done by those organisations but about what needs to happen to improve diagnosis of both FAS and FASD and to improve support for children and adults who experience that and for the families who care for them. Most importantly of all—the issue that is the crux of this debate—I heard about what we can do to prevent it in the first place. I will deal with each of those subjects in turn.

On improving diagnosis, we have heard from a number of Members about the wide range of symptoms that people with FAS or FASD can experience. The difficulty in diagnosis means that we have no official understanding of the scale of the problem, with many cases misdiagnosed as ADHD, bad behaviour or autism. It is estimated that around one in 100 children are born every year in the UK with some form of the condition. Figures I uncovered through a parliamentary question reveal that the number of finished admission episodes where there was either a primary or secondary diagnosis of foetal alcohol syndrome are up 37% in England since 2009-10, with 252 episodes in 2012-13. As many hon. Members alluded to, those figures are only the tip of the iceberg.

[Kelvin Hopkins]

I remember a report from the Home Office in the 1970s that showed that the rate of alcohol consumption in Britain was among the lowest in Europe; the only country where it was lower was Ireland. It would be simple to compare the number of birth defects in that period of time with the number now, to see the effects of alcohol consumption among women.

[Luciana Berger]

My hon. Friend’s remarks lead me to the challenge that the Government themselves admit in their alcohol strategy. They say:

“We do not have good information about the incidence of FASD, so it is likely that significant numbers of children are not diagnosed.”

In the response to my parliamentary question, there was no information about what action the Government intend to take to address that information deficit, so will the Minister confirm whether she has any plans to commission a much-needed prevalence study of FASD and foetal alcohol syndrome in England? Will she share with us her plans to improve diagnosis across the country?

[Bill Esterson]

Will my hon. Friend give way?

[Luciana Berger]

Forgive me, but I will not: we must allow the Minister to respond, and we have just 10 minutes.

I move on now to improving support both for people who have a diagnosis and for their families. Many sufferers have special needs that require lifelong help, yet slip under the radar either because they are not diagnosed or because there are no services in place to support them. Lack of diagnosis for those who do not exhibit physical signs means that those children often receive no additional help from support services or at school. I recently met a head teacher, who said she did not have a single student in her school who had been formally diagnosed, but she was sure that some students were affected.

There is no systematic record of the needs of children with FASD and no official guidance on best educational strategies, as my hon. Friend the Member for Sefton Central said. There is just one specialist FASD clinic in the whole of England, which is run by Surrey and Borders Partnership NHS Foundation Trust. It is one of the few places that can confidently diagnose the disorder. It is a national clinic, supposedly serving the entire country, yet it is not commissioned by NHS England. Out-of-area patients must be paid for, and with a cost of £2,500 per patient, many local clinical commissioning groups refuse to refer. Worst of all, I understand that the clinic is not due to be commissioned beyond April 2015. What does the Minister intend to do to ensure that NHS England commissions services and that plans are in place to improve provision and to increase both the number and the spread of specialist FASD clinics? Without specific support, people who are affected are at higher risk of developing mental health problems, getting into trouble with the law, dropping out of school and becoming unemployed. That may come at massive personal cost and in turn produce a tremendous cost for society. The crux of this debate is how to prevent that.

I have highlighted how we need to improve diagnosis and support services. Let me reiterate a point that has been made several times today. FASD is entirely preventable. It is caused by drinking during pregnancy, but the information about the risks of drinking during pregnancy is wholly inadequate. The guidance is inconsistent and confusing, and women receive mixed messages. The Department of Health recommends that pregnant woman should avoid alcohol altogether, but that if they opt to have a drink they should stick to one or two units of alcohol once or twice a week to minimise the risk to the baby. The National Institute for Health and Care Excellence advises women to abstain from alcohol completely during the first three months of pregnancy because of the risk of miscarriage. It then refers to the number of units that they should or should not drink subsequently.

People struggle to use units as a way of monitoring their alcohol consumption. Research from the Joseph Rowntree Foundation found that very few people use units as a way of measuring their drinking or of monitoring their health. Is it any wonder that women are confused? What is the Government’s official advice and what plans does the Minister have to improve much needed awareness throughout the country?

It is not just expectant mums who are not being given the information they need. The hon. Member for Chatham and Aylesford (Tracey Crouch) referred to health professionals and my hon. Friend the Member for Huddersfield (Mr Sheerman) referred to GP training. Earlier this year, I asked a parliamentary question about midwives, but the reply did not fill me with confidence. The issue involves not just women who have mental health or substance misuse support requirements, as the reply suggested; it involves all women, but the Government’s 32-page alcohol strategy makes just one reference to FASD, and that is not good enough.

Voluntary organisations do fantastic work and some local authorities—just some—are raising awareness locally. Some include FAS in their joint strategic needs assessment, but that is far from commonplace. What will be the Government’s concerted and co-ordinated response and where is their national drive? I struggled to find any information on the website of the Department of Health and I found nothing on the website for Public Health England. I would be delighted if the Government pointed me in the right direction.

We have heard a lot this afternoon about alcohol labelling. There is no legal requirement in the UK to display proper warnings about the harm of drinking alcohol during pregnancy. We have heard many references to Lord Mitchell’s Alcohol Labelling Bill, which sadly did not progress beyond the Lords. Today, it is still left to businesses to decide whether to display warnings.

As part of the Department’s responsibility deal, alcohol retailers and producers have made a voluntary commitment to put an agreed warning or a pregnancy warning logo on 80% of labels on bottles and cans. In June, the Minister responded to me saying that an independent market survey is under way to measure compliance. I am keen for an update on how that survey is going.

Many hon. Members on both sides of the Chamber have said that the logos are very small, if they are there at all. They are difficult to see because they are just a few millimetres high. They go unnoticed by many people and fail to convey the seriousness of drinking during pregnancy. Many countries prescribe warning labels about pregnancy on all alcoholic beverages and we have heard about them this afternoon. They include Colombia, South Korea, France and South Africa. I would like to hear from the Minister when the UK will follow suit.

We have heard about other countries that are leading the way. Canada was held up as an exemplar for what it is doing on diagnosis, treatment and specifically prevention. It is spending millions of dollars, because it believes that that will not only prevent something that is very difficult for many people, but comes at great cost to society. It believes that preventing FAS in just 10 babies saves enough to fund all the comprehensive services that it provides.

Very few disabilities are preventable, but FASD is. The message about the risks must be loud, clear and consistent. No woman wants to harm her child, but we know that lack of knowledge about the dangers of drinking during pregnancy can have a devastating impact. The Government’s response to the problem must be thorough, coherent and carried through into effective action. I look forward to hearing the Minister’s response and what more the Government will do to address this serious issue.