Human Fertilisation and Embryology

Luciana Berger Excerpts

Tuesday 3rd February 2015 Commons Chamber

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

The impassioned and thoughtful contributions to the public debate that we have heard in recent weeks and months are testimony to what a sensitive and complex matter this is. Only last night, an event held in Committee Room 10 was attended by hundreds of people who are interested in the debate, and we heard representations from both sides.

On the one hand, we have celebrated the triumph of science that these new techniques represent. It is thanks to years of pioneering research by the university of Newcastle on how we can prevent the transmission of genetic mutations that we are finally reaching the point at which we can consider using these transformative techniques in humans. We have within our reach the possibility of eradicating mitochondrial disease from families who have been blighted by it for generations: families who have endured a disease for which there is no cure, who have suffered daily battles with painfully debilitating symptoms, and who have sadly lost their children prematurely. Those families have had to face up to the risk, and perhaps the certainty, that to be a parent must come at the expense of a difficult and, in too many cases, painful life for their children. Not only would children born through such techniques be free of such conditions, but so would their children and grandchildren. This treatment would break a chain of misery that would otherwise have ruined generations of lives.

On the other hand, we are grappling with the serious ethical and moral questions that are raised by the proposed introduction of such techniques. Members have previously shared their anxiety about the uncharted territory in which we now find ourselves. The proposed regulations would make Britain the first country to legalise mitochondrial transfer, and scientists have acknowledged that there would always be a “leap of faith” the first time the technique was used.

[Robert Flello]

I think we need to dispel the myth that there will be a “first time”. This was done more than a decade ago. In its recent analysis, the HFEA ignored the Zhang study. The Minister is shaking her head. She has clearly not read the study, which showed that when the technique was first tried, triplets were conceived. One was terminated almost immediately—within 30 days—and, of the other two, one was stillborn and the other died as a result of miscarriage. That is the reality. This is not groundbreaking; it has been done before.

[Luciana Berger]

I shall be dealing with the expert panel reviews that have been conducted since the date to which my hon. Friend has referred.

It is right that we have had a chance to hear all the arguments and to give them full and proper consideration, but it is critical to the integrity of the decision that is eventually reached for the debate to be based on the facts. When debating matters such as this, we will naturally hear a number of contradictory assertions. I am sure that the Minister will reassure the House about any further issues that are raised during the debate.

[Mr Donohoe]

May I ask the shadow Minister a simple question? Is this a case of DNA being genetically modified?

[Luciana Berger]

I do not believe that that is what is being proposed, but I shall deal with my hon. Friend’s very specific point later in my speech.

[Richard Drax (South Dorset) (Con)]

I know from a meeting that I attended before the debate that the HFEA has said, “PNT involves genetically modifying a human embryo”.

[Luciana Berger]

That point was raised in an earlier intervention. I think it is clear from reports following reviews by the expert panel that it has already been specifically addressed, but I shall deal with it in more detail later.

[Dr Julian Huppert (Cambridge) (LD)]

There seems to be a lot of confusion between nuclear DNA and mitochondrial DNA. It might help the hon. Lady and the House if I point out that they have completely different origins. They have a different genetic code; they are not related. The origin of mitochondria is bacteria that were engulfed by cells. They are very different. The House should be aware of that.

[Luciana Berger]

I thank the hon. Gentleman for that clarification.

Many concerns have been raised, the first of which is that this process is being rushed through. Anyone who has been involved in the development of these techniques would disagree that this has moved quickly. Professor Doug Turnbull and his team at the university of Newcastle have been researching this for 15 years. It was over six years ago, back in 2008, that the Human Fertilisation and Embryology Act 1990 was amended to introduce the powers to allow regulations that would enable mitochondria replacement to take place to be brought forward. It was back in 2010 that researchers at the university of Newcastle developed the techniques to avoid diseased mitochondria being passed from a mother to her children. After another three years of consultation and review processes, the Government announced in July this year that they would be bringing forward the regulations to enable mitochondrial donation techniques to be used, and that is what we are voting on today.

[Guy Opperman (Hexham) (Con)]

The hon. Lady and I both attended the meeting last night, which was very productive and helpful. Does she agree that this is about choice for the families? I have constituents who have this particular disease and constituents who work at Newcastle university, and what we are trying to do is provide a scientific way forward, under a highly structured and licensed regime, to alleviate these particular families’ suffering.

--- Later in debate ---

[Luciana Berger]

I thank the hon. Gentleman for that intervention. It was clear last night when we heard from the affected families that they wanted that choice, and these regulations very specifically only apply to those families that are affected by mitochondrial disease.

[Mr Peter Bone (Wellingborough) (Con)]

Will the hon. Lady give way?

[Luciana Berger]

I am going to finish my point, if I may.

In the intervening years the science and ethics of these techniques have been extensively debated. The Nuffield Council on Bioethics and the HFEA held extensive public consultations in 2012 and identified broad public support for the use of these techniques. There have been three expert scientific review panels—in April 2011, March 2013 and June 2014—all of which found no evidence to suggest that the techniques are unsafe for clinical use, and only last week a group of eminent scientists and experts in medical ethics, including Professor Sir John Sulston, Baroness Warnock and Sir Paul Nurse, wrote to The Times urging Parliament to approve the new regulations. They argued that the question parliamentarians must consider is not whether we would want to use this technique ourselves, but whether there are grounds to prevent affected families from doing so. I again reiterate what we have heard in the representations from families, and particularly women of child-bearing age: they want the opportunity to use these techniques.

[Mr Bone]

The hon. Lady is making a very good speech and is trying to make it balanced. She talked about last night’s meeting, which I understand went on for quite some time, and there has been a lot of debate outside this Chamber, but is she satisfied that we come here to the Chamber this afternoon with only 90 minutes to discuss this? Would it not be better if we were to withdraw this motion today and come back with more time to debate it next week?

[Luciana Berger]

Unfortunately, it is not in the Opposition’s gift to determine the time allocated for these debates. I would have welcomed further debate, and we had an opportunity in a previous Backbench Business Committee-initiated debate to discuss these matters.

[Dr William McCrea]

Will the hon. Lady give way?

[Luciana Berger]

I am going to make some progress, because I am conscious—referring back to the intervention of the hon. Member for Wellingborough (Mr Bone)—that we have limited time and many Back Benchers wish to contribute.

It is important to note that the use of these techniques will not be rushed into lightly if Parliament does pass them today, and specialist clinicians will then have to obtain a licence from the HFEA to use the techniques. We heard last night that this will only be in centres of excellence, and the HFEA will consider applications on a case-by-case basis.

We have heard concerns in previous debates that allowing mitochondrial donation is a dangerous road to start down, and that it could potentially lead to designer babies and parents being able to select the physical characteristics of their children. But we have also heard in the public debate that these fears do not take into account the fact that these regulations are very specific and cover only mitochondrial DNA, not the nuclear DNA that determine our physical characteristics. The legislation only permits the use of these techniques in the clearly defined situation of incurable mitochondrial disorders.

The fact that these techniques apply only to the mitochondrial DNA and not to nuclear DNA should provide further reassurance to those Members concerned that this process would result in “three-parent babies.” As we have heard, mitochondrial DNA only controls mitochondrial function and energy production. Importantly, nuclear DNA, which makes us who we are and determines appearance and personality, will not be altered by the techniques that we are discussing today.

The regulations clarify that a mitochondrial donor is not to be treated as a parent, by contrast with the legal position for sperm and egg donors, who are treated as people who would, or might, be the legal parent of a child born from their donation.

There are questions around the safety of these techniques. As we have heard, this technique has received unprecedented scrutiny by the HFEA’s specially convened expert scientific review panel. However, it is possible that side effects could emerge over time and scientists have acknowledged that there would always have to be a “leap of faith” the first time the technique is used in humans.

[Sir Edward Leigh (Gainsborough) (Con)]

On the question of safety, does the hon. Lady not consider it significant that the Food and Drug Administration in the United States said that it was not clear that the scientific procedures were effective and safe? The FDA, of course, refused to allow the use of Thalidomide while we did, and the rest, as they say, is history.

[Luciana Berger]

I understand that the FDA has written to the British press in the course of the last week to contradict that position. There is a very different political situation in the US, and there is a very different set-up there in terms of the FDA compared with here and what we are discussing today.

[Angela Smith (Penistone and Stocksbridge) (Lab)]

Does my hon. Friend agree that the fact is that any scientist would say that no technique is entirely safe but the risk in this case is very low indeed, and completely justifies the leap of faith she describes, which is in effect a further advance in the use of IVF technology—which itself was pioneered as a leap of faith in 1978?

[Luciana Berger]

My hon. Friend makes some very important points, particularly about the assessment of risk, which has been done extensively throughout this process.

The question is whether the benefits of preventing the transmission of mitochondrial disease, and the likelihood that children will continue to be born who will die in infancy, outweighs the risks of the techniques. The scientific community and the families experiencing mitochondrial disease say that they do; and according to research, almost 2,500 women in Britain of child-bearing age are at risk of passing the condition on to their children. It is now up to Members to decide whether they agree.

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

I am most grateful to the hon. Lady for setting out a balanced case. Can she clear something up for me? I understand that there are two sources of mitochondrial disease: the DNA in the nucleus as well as the mitochondrial DNA. Can she confirm that mitochondrial disease from the nuclear DNA will remain in our population even after this treatment is licensed?

[Luciana Berger]

I hope the Minister might be able to address that in her response to the debate, with the support of her officials. It is not something I have been made aware of, and it certainly has not come up in any of the discussions or debates that I have attended.

I will now conclude, as I know that many Members wish to contribute. The research has been done, the reviews carried out and the experts and the public have been consulted. Time is precious for those parents at risk of passing on mitochondrial inherited disease to their children, and I believe that we must not delay any further.

[Several hon. Members]

rose—

Child and Adolescent Mental Health Services

Luciana Berger Excerpts

Monday 2nd February 2015 Commons Chamber

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

(Urgent Question): To ask the Secretary of State for Health if he will make a statement on the availability of child and adolescent mental health in-patient beds, and on child and adolescent mental health services more generally.

[The Minister of State, Department of Health (Norman Lamb)]

Since April 2013, NHS England has been responsible for commissioning in-patient child and adolescent mental health services—CAMHS—often referred to as tier 4 CAMHS. In 2014, NHS England reviewed in-patient tier 4 CAMHS and found that the number of NHS-funded beds had increased from 844 in 1999 to 1,128 in 2006. That has now risen to more than 1,400 beds, the highest this has ever been. These data are now being collected nationally for the first time, but despite the overall increase, NHS England also found relative shortages in the south-west and areas such as Yorkshire and Humber.

In response, the Government provided £7 million of additional funding, allowing NHS England to provide 50 additional CAMHS specialised tier 4 beds for young patients in the areas with the least provision—46 of these beds have now opened. NHS England has also introduced new processes for referring to and discharging from services, to make better use of existing capacity. A key objective of these actions is to help prevent children and young people from being referred for treatment long distances from home, except in the most specialised cases.

National availability of in-patient CAMHS beds is reviewed each week by NHS England specialised area commissioning teams and the national lead for commissioning, identifying any issues and taking proactive steps to address them. On 30 January, it emerged that the number of general CAMHS beds available was lower than in recent weeks. In response, NHS England implemented contingency plans, including contacting existing CAMHS providers to seek additional capacity and increasing the use of intensive home support packages to allow children and young people to be treated at home or on a non-specialised ward. NHS England has also contacted mental health providers to alert them to the immediate capacity issues in CAMHS and establish what capacity existed in adult in-patient and community services to take cases on a temporary basis, should that option be required.

The Government are committed to improving CAMHS as part of our commitment to achieving parity of esteem between mental and physical health—this is not just for in-patient services, but for services in the community, and for services that seek to intervene early and prevent problems arising. That, ultimately, is where the focus must be to ensure that, as far as possible, we spot issues early and prevent them from worsening, reducing the need for in-patient treatment.

In August 2014, the Department of Health set up the child and adolescent mental health and well-being taskforce. The taskforce brings together a range of experts from across health, social care and education. It will consider how we can provide more joined-up and accessible services built around the needs of children, young people and their families. A Government report on the taskforce’s findings will be published in the spring.

The Government have also invested £54 million in the children and young people’s improving access to psychological therapies programme and will invest £150 million over the next five years in improving services for those with eating disorders.

[Luciana Berger]

All over England, our child and adolescent mental health services are increasingly under pressure. Despite the best efforts of NHS staff, the system is now in crisis. Children are being sent hundreds of miles for treatment or detained in police cells because there is nowhere else for them to go. We are also hearing of young people getting no treatment at all. I was appalled to see the copy of the e-mail that NHS England commissioners sent on Friday night, warning mental health trusts of a national shortage of in-patient beds for children. It was almost one year ago that the chief executive of YoungMinds said that the increase in the number of children placed on adult wards was entirely predictable following cuts to mental health services. Why did the Minister not act on that warning and do something to prevent it from happening?

The e-mail from NHS England said that the shortage would make it likely that 16 to 18-year-olds would need to be admitted to adult wards. Senior inspectors at the Care Quality Commission say that under-18s should not be put on adult wards, so why is NHS England issuing guidance that contravenes that advice? Adult mental health wards are no place for young people, but how can the Minister be sure that even in emergencies adult wards can accommodate children and teenagers? Adult mental health wards are operating at well over their recommended capacity, and today the Royal College of Psychiatrists has warned that the lack of acute beds available to mental health patients has left the system at breaking point. If adult mental health wards are full, where will these children go? What assessment was used to determine how many beds were needed? Clearly, it is not working. Does the Minister now plan to reassess the situation?

Why are so many of our children and young people needing in-patient mental health care in the first place? Could it have anything to do with the £50 million of cuts to child and adolescent mental health services? The Minister talked about early intervention, but we have seen cuts to early intervention in psychosis services, cuts to crisis services in the community, and the decimation of the early intervention grant, putting a lot of pressure on in-patient services. Could the problem be the fragmentation of commissioning we have seen across the health service since the Government’s reorganisation of the NHS?

The Government have paid lip service to parity of esteem and brought cuts and crisis in reality. Our children deserve better, and that is why Labour is committed to working to reverse the damage done to child and adolescent mental health services by this Government and why we have pledged to end the scandal of the neglect of child mental health.

[Norman Lamb]

First, let me caution against sanctimony. This is not a new issue: under the previous Labour Government, children did at times end up in adult wards. That is highly undesirable—everyone recognises that—and we must do everything we can to prevent it, but please do not try to claim that this is an entirely new problem. It is not. The Government have significantly increased the number of beds available, so significantly more are available now than there were in the last decade. The hon. Lady says that she sees increasing numbers of children held in police cells, but let us have some honesty and accuracy in this debate. The number of children who end up in police cells is falling, not increasing. The crisis care concordat, published last February, set a commitment to end the practice of children going into police cells. Indeed, we intend to legislate to ban it, but the numbers are lower than they were so she should not suggest that it is a growing problem—[Interruption.] She did suggest that.

The hon. Lady asked about my acting on the warning. That is exactly what we did. NHS England carried out a review of clinical judgment on the capacity required to meet children’s needs. As a result, there was a proposal for an increase of 50 beds nationally, focusing on the areas of the country where there was a significant problem, and the Government provided £7 million of additional funding to ensure that those beds were opened. Forty-six beds have opened. There is a temporary problem in Woking, where beds that were available are no longer accepting new admissions. That is a CQC issue. One thing that we have been absolutely steadfast on is that if standards are not being met, we should not continue to admit children to those wards.

The hon. Lady mentioned psychosis services, but this Government, for the first time ever, introduced a waiting time standard for early intervention in psychosis, which was widely welcomed by everyone in the mental health world. From this April, we start the process of introducing a standard. To start with, 50% of all youngsters who suffer a first episode of psychosis will be seen within two weeks and start their treatment within two weeks. That is an incredibly important advance.

The hon. Lady lectures the Government on mental health services, but perhaps she will consider why the Labour Government left out mental health when they introduced access and waiting time standards for all other health services. That dictates where the money goes and means that mental health loses out. This Government are correcting that mistake.

Blood Safety (Variant Creutzfeldt-Jakob Disease)

Luciana Berger Excerpts

Thursday 29th January 2015 Westminster Hall

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

It is a pleasure, as always, to serve under your chairmanship, Sir David. I thank the Chair of the Select Committee on Science and Technology, my hon. Friend the Member for Ellesmere Port and Neston (Andrew Miller), and the other Committee members for their extremely thorough and valuable report, and for ensuring that we have the opportunity to debate this important issue.

I think that we all agree that variant Creutzfeldt-Jakob disease is a deadly illness around which many uncertainties remain. The report “After the Storm?”, the Government’s response and this debate are welcome contributions to parliamentary and public understanding of vCJD, transfusion and prion diseases, and the Government’s action in response to those risks.

The history of blood transfusion in this country is impressive and important. The principle of freely given, unremunerated blood donation operating within the NHS, free of commercial considerations, has served this country well. It was Richard Titmuss who famously described that arrangement as “the gift relationship” and blood as

“a bond that links all men and women in the world so closely and intimately that every difference of colour, religious belief and cultural heritage is insignificant beside it.”

We have come a long way since the UK’s first voluntary blood service was founded by the British Red Cross to help the treatment of servicemen in 1921. Today, approximately 2.2 million whole blood product donations are made in the UK each year and screened for a variety of different pathogens. Those donations are tested, processed and distributed by one of the country’s four blood services. The success of the system hinges on an assurance of the very highest level of safety and risk avoidance. Sometimes, an element of honesty is important on the part of the potential donor, but even more important are procedures to protect recipients of blood and blood products from risk. We should be proud that our UK blood supply has been proven to be extremely safe. In the vast majority of cases, the benefits of receiving a transfusion far outweigh the risk of acquiring a transfusion-transmitted infection.

Sadly, however, we have reached that point only after significant tragedy. Last week, the House debated a report by the all-party group on haemophilia and contaminated blood that looked at support for the thousands of haemophiliacs who were treated with blood that carried the hepatitis C virus in the 1970s and ’80s. In the ’80s and early ‘90s, contamination of the UK blood supply with HIV led to a further 1,200 infections. Since those tragedies, all UK blood donations have been tested for HIV and hepatitis C. Those experiences are relevant to this debate, because the safety measures were implemented only after those mass infection events.

The report “After the storm?” makes a helpful distinction between the known risks that can be well mitigated and the known risks that cannot. Our existing blood safety measures are largely focused on the known risks that we can easily mitigate through measures such as testing and screening. Unfortunately, as we have heard, prions, which are responsible for variant CJD, are invulnerable to those methods, so we need to develop new ways to mitigate those risks. The key question that we have debated today is how far the Government should prioritise such research and development.

It is extremely difficult to draw conclusions, because so many uncertainties remain. However, there are several things that we know. Although it is extremely rare, variant CJD is invariably fatal, and most people die within a year of first experiencing symptoms. Recent studies indicate that tens of thousands of people in the UK could be silent carriers of the prions responsible for the disease, and they may transmit those prions to others. Cases of transfusion-transmitted variant CJD are known to have occurred although, as has been pointed out, that happened 15 years ago. The Government have acknowledged that risk.

Currently we do not use a test to detect the presence of prions, but there are emerging technologies that could mitigate the risk, such as prion filtration and the prototype variant CJD blood test. It is natural to hope that the Government will adopt a precautionary approach and support the development and introduction of technologies that have the potential to mitigate those risks. The report “After the storm?” makes concerning reading in that regard. I take on board the Government’s response that they have not reduced any of the significant steps taken since the late 1990s to reduce the potential for secondary transmission. It is also welcome that the Department continues to allocate its only ring-fenced research budget to research related to prion disease, but the question is whether that is sufficient. In her covering letter to the Government’s response to the report, the Minister wrote:

“There are competing research priorities for our limited funding”.

That must be true, but surely there can be no greater priority than assuring the safety of patients receiving blood transfusions.

The Science and Technology Committee examined several possible technologies that might be developed to militate against the transfusion of variant CJD, and I will discuss some of them briefly. The Chair of the Science and Technology Committee, like the hon. Member for Mole Valley (Sir Paul Beresford) and my right hon. Friend the Member for Holborn and St Pancras (Frank Dobson), spoke about those technologies, but I have further questions about them for the Minister. The development of a test for the presence of the prion is of enormous importance, given that data suggest that the prevalence of sub-clinical disease and infection may be as high as one in 2,000 people. Although this is disappointing, I appreciate that the Government may not be in a position to commit to a prevalence test yet. It is welcome that they have committed to seeking the views of the transmissible spongiform encephalopathy sub-group of the Advisory Committee on Dangerous Pathogens on the scientific and technical issues involved in developing such a test and on the potential value of a blood prevalence study. I would welcome an update from the Minister on how that work is progressing and when the Government will be in a position to make a decision about the value of a prevalence study.

The report examined ways to mitigate the risk of transmission of prions by surgical instruments and the Committee expressed concern about the implementation of guidance on the decontamination of surgical instruments. It is indeed alarming that such concerns exist. As we have heard from the Committee Chair and the hon. Member for Mole Valley, it should be part of local clinical governance arrangements that such a fundamental patient issue should dealt with, reviewed routinely and reported to the board of the trust.

The Government stated in their response to the very reasonable recommendation of the Science and Technology Committee:

“Accordingly, the Department will discuss with the CQC the need for the implementation of decontamination guidance to be addressed in its regulatory activity”.

I find that use of the word “discuss” a matter for concern. Decontamination should be mandated, inspected and assured. Patients might find it worrying that all the Department of Health is prepared to do is to “discuss” with the CQC the need for action on the matter. I would be grateful for the Minister’s assurance that the proper sterilisation of medical instruments will be dealt with as a matter of urgency.

[Sir Paul Beresford]

To be fair, I think that the hon. Lady should recognise that the RelyOn is not in a state in which it can be simply used. It is a wash, but if the opportunity were there, it might well be developed for the market so that it could be put into washer-disinfectors. I think that that is perhaps what the discussion is about.

[Luciana Berger]

I thank the hon. Gentleman and hope that the Minister will deal with that point. She could perhaps directly task the newly appointed regional public health directors of Public Health England to review instrument sterilisation in all trusts and report directly to her on the matter.

Prion filtration is another possible method of mitigating the risk of transmission of variant CJD. That is the process through which prions are physically removed from blood through the use of highly specific resin ligands. After recommending the use of the technique in 2009, the Advisory Committee on the Safety of Blood, Tissues and Organs decided in 2012 to rescind its initial recommendation, so prion filtration has not been adopted in the UK. The scientific decision making of the committee must of course be respected, so I do not seek to challenge its decision, but the Select Committee’s report raises important questions about the process that is followed through such reviews, and makes some important recommendations.

The report recommends, for example, that the health technology appraisals conducted by the advisory committee should use the same methodology and meet the same high standards as those undertaken by NICE, the UK’s centre of excellence for that activity. The Government have said that work to explore the differences in appraisal methodology between NICE and other health-related bodies, including the Advisory Committee on the Safety of Blood, Tissues and Organs, is being carried out through an appraisal alignment working group. I reiterate the question asked by my hon. Friend the Member for Ellesmere Port and Neston: will the Minister please give us an update on how the work is progressing and when the group will report?

The “After the storm?” report raised concerns that the scientific advisory committees are not currently independent of the bodies to which they provide advice. In response, the Government also said that they would review the terms of reference of the Advisory Committee on the Safety of Blood, Tissues and Organs and ensure that they are clarified appropriately. They said that the advisory committee is planning to amend its code of practice so that future working groups and sub-groups will not be chaired by someone who holds a senior policy-making position in an organisation if the topic under consideration relates directly to that organisation’s interests or activities. Has that work now been completed?

We should all agree that protecting the public from potential harm by transmission of the prion that causes variant CJD—or, indeed, from the transmission of any serious threat to health via our blood service—should be given the highest priority. The Science and Technology Committee has raised valid concerns that some recent Government decisions signal a change from the precautionary approach to variant CJD risk reduction of the late 1990s to a more relaxed approach today. As we have heard, significant questions remain, so I look forward to the Minister’s response.

NHS (Government Spending)

Luciana Berger Excerpts

Wednesday 28th January 2015 Commons Chamber

[Dr Poulter]

My hon. Friend makes an important point. We have made considerable progress under this Government in improving the funding in the past year—£302 million more for mental health services—and in making sure that from this year, for the first time, there will be genuine parity between mental and physical health when we introduce access targets. They will ensure that patients are seen in a more timely manner when they suffer from mental illness and need specialist care and referral. Our record in office on mental health is something I think we can be very proud of. We have for the first time in many years reset the debate. There is now becoming a genuine parity of esteem between mental and physical health.

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

It is always important to hear the Government talk about parity of esteem. In practice, however, we have seen many examples in the past year where that has not actually applied, whether that is NHS England’s decision to apply a cut to a mental health trust that is 20% higher than for all other trusts, or the figures we saw this year showing that child and adolescent mental health services have been cut by £15 million. Is it not just warm words to talk about parity of esteem, when in reality people have to travel hundreds of miles to access in-patient care or not get any treatment at all?

[Dr Poulter]

Frankly, the previous Government’s record on investing in mental health was woeful. To reassure the hon. Lady—I think it would perhaps be worth her noting the points I have raised—we have increased the mental health budget this year by £302 million. I will talk a little more about support for children with mental ill health later in my remarks.

We have also put a lot of investment and support into tackling perinatal mental health. By 2017, for the first time, mums will have specially qualified and trained staff in every birthing unit to provide support for perinatal mental health. [Interruption.] The hon. Lady says that is not treatment. I am a doctor. I work in maternity. It is absolutely right that we put in place the right support for perinatal mental health. I am sorry, but frankly that is misunderstanding the clinical reality of what it is like to look after patients. It does the hon. Lady—and those on the Opposition Front Bench—a great disservice.

At a time of continued pressure on the public finances, the additional funding announced by the Chancellor in the autumn statement further highlights the priority the Government place on our NHS. The extra money we have provided will enable our NHS to continue to meet significant and rapidly rising patient expectations and demands in the short term, while allowing us to make important investment in new models of community-based care in order to realise the vision set out in NHS England’s “Five Year Forward View”.

The Government’s commitment to our NHS is clear. By ensuring a strong economy, we will also ensure that our NHS remains sustainable in the long term as a health service that is free at the point of need and of use—the health service we all believe in.

Oral Answers to Questions

Luciana Berger Excerpts

Tuesday 13th January 2015 Commons Chamber

[Dr Poulter]

As my right hon. Friend will be aware, the funding formula is now reviewed regularly. That is done independently and is free from political interference. Looking at areas such as hers, where there are a lot of frail and elderly patients, is now more paramount in the funding formula. In the future, I am sure that the funding formula will better reflect local health care needs.

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

One in four patients now wait a week or longer to see a GP. Last week’s official NHS survey revealed that almost 1 million people had to turn to A and E because they could not get a GP appointment. Will the Minister accept that his Government have made it harder to see a GP, and have caused the A and E crisis in the process? Will he respond to Labour’s call for GPs to be placed in major A and Es to help ease the pressure?

[Dr Poulter]

I do not think that people wanting to see their GP was at all helped by the previous Labour Government’s disastrous decision to contract out the GP out-of-hours service. Many patients are now struggling to receive appointments in the evenings and at weekends. The previous Government also broke the link with family doctors. To reassure the hon. Lady, the latest GP patient survey results suggest that less than 2% of patients who want GP appointments have to resort to walk-in centres or A and E departments. Under this Government, we have put in place an extra 1,000 GPs.

Oral Answers to Questions

Luciana Berger Excerpts

Tuesday 25th November 2014 Commons Chamber

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

The Minister talks about parity of esteem, but it is under this Government that mental health budgets have been unfairly cut, and 1,500 beds and 3,300 nurses have been lost. He has already received a damning Select Committee report on child and adolescent mental health services. Ill people are being locked in police cells, or are travelling hundreds of miles to find a bed. The Minister could not have brought about more disparity if he had tried—and now we hear that there is to be yet another review. He is the Minister in charge. I ask him again: what action is he going to take today?

[Norman Lamb]

Inexplicably, when the last Labour Government introduced access and waiting time standards, they left out mental health. That was an extraordinary decision, and it drives where the money goes. The introduction of mental health waiting time standards next year, for the first time ever, will help to achieve equality for mental health. We have also published a vision of the next five years explaining how we will secure genuine equality for mental health, which is something that the last Labour Government did not achieve.

Physical Inactivity (Public Health)

Luciana Berger Excerpts

Tuesday 18th November 2014 Westminster Hall

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

It is a pleasure to serve under your chairmanship again, Mr Weir. I congratulate my hon. Friend the Member for Blaenau Gwent (Nick Smith) on securing this debate and all colleagues across the House who supported the application for it. We have heard some important contributions by hon. Members from all parties.

I should like to take this opportunity to thank the many organisations that are doing an important job to get Britain moving—hon. Members mentioned many of them—including ukactive, Sustrans and StreetGames. I had the pleasure of joining Living Streets on a walk to work back in May, to celebrate national walking month and the benefits of walking to work, so I have seen first hand the fantastic work that it does. I also thank my hon. Friend for mentioning pedometers. Many hon. Members measure their steps on a daily basis. I am just on 2,000 already today and on my way to securing my 10,000 a day.

I share hon. Members’ concerns about the place of physical activity in our society. Just a few generations ago, physical activity was an integral part of daily life, yet today it is becoming ever less a part of our daily routines. The opportunity to move and be active in modern life has declined dramatically: advances in technology mentioned by hon. Members, the rise in passive entertainment options, community safety concerns, roads that are not safe for pedestrians and cyclists, and limited playgrounds and green spaces are just a few of the reasons why.

We have heard the statistics, but they are worth reiterating. In some parts of the UK, more than 40% of the adult population is classed as inactive and a quarter of all adults in England are failing to do enough physical activity to benefit their health. Nearly half of all 11 to 25-year-olds in England—more than 4.5 million individuals —fail to achieve the chief medical officer’s recommended levels of physical activity. This is deeply concerning. Our nation’s children and young people are not getting the activity that they need to stay strong, fit, healthy and happy, which is something that will inevitably affect them in later life.

As we heard, insufficient levels of physical activity are estimated to cost more than £7.5 billion nationally. Other figures have also been mentioned. That sum is broken down to just over £1 billion in the NHS, £5.5 billion in lost productivity and £1 billion in premature mortality among the working-age population. My hon. Friend the Member for Easington (Grahame M. Morris) also mentioned the staggering 16 million days lost in the workplace, which we must be concerned about and take action on.

More than 1 million children are classed as obese and a third of children leaving primary school are classed as obese or overweight. We know that the status quo is not working. If we are to make the NHS financially sustainable in the 21st century, it follows that we need to have the most ambitious plans for physical activity, to contend with those lifestyle diseases that the NHS is increasingly responding to.

We know that physical activity is the simplest and cheapest route to good health and staying well. Moving from inactivity to activity is one of the easiest first lifestyle changes to make. This has been looked at academically and found to be easier than altering diet, stopping smoking or reducing drinking—and it can cost next to nothing, too. However, the issue is about more than health; it is also about people fulfilling their potential and making the maximum contribution. We know that children who are more active are more likely to achieve better exam results and earn more throughout their lives. I echo the concerns of my hon. Friend the Member for Blaenau Gwent about lower levels of physical activity in more deprived communities. I should be keen to hear the Minister respond to that issue.

Put simply, physical activity and sport builds strong people and strong communities. Yet for an activity that brings such universal health benefits, there seems to be very little centrally driven support for its promotion. We have neither a way of accurately measuring the physical activity people take, nor consistent messages about what level of physical activity people should be taking. Until recently, the guideline for adults was for them to take 30 minutes or more of physical activity of moderate intensity on at least five days a week. That is a minimum of two and a half hours of physical activity per week.

In 2008, the health survey for England measured physical activity among adults by means of a questionnaire. Some 39% of men and 29% of women reported that they met the recommended minimum level of physical activity. However, when accelerometers were used on a group to measure their physical activity objectively, the real percentages were actually 6% and 4%. That was complex enough, but to make things more challenging, in 2011 new guidelines were produced by the UK’s four chief medical officers that are particularly complex—I shall not read them out; I struggle to understand exactly what the recommendations are.

There are other issues to consider, too. The active people survey does not actually measure activity and does not include recreational walking or recreational cycling. We no longer even have a way of measuring children’s participation in school sport, because the school sports survey, which measured the proportion of pupils receiving two hours of curriculum PE and the proportion participating in at least three hours of “high quality” PE a week, was scrapped in 2010. So, too, were the regulations that previously tracked schools’ travel patterns. Will the Minister share with us any plans to clarify this confusing picture and introduce a more consistent way of measuring physical activity? Are there any plans to reintroduce the school sports survey and school travel survey?

Again I share concerns raised by hon. Members about the Olympic legacy in our country, despite the huge progress made under the previous Labour Government. In 2002, just 25% of children undertook two hours of PE and sport in school, but by the end of the previous Labour’s Government time in office this had been raised to 93%. The previous Labour Government also created 422 school sports partnerships and 2,300 school sport co-ordinators, covering every school. It was my right hon. Friend the Member for Kirkcaldy and Cowdenbeath (Mr Brown) who promised a “golden decade of sport”, kicked off by the Olympics and Paralympics in 2012. Yet a series of decisions has meant that these ambitions have not quite been realised under this Government.

The school sport partnerships—the local networks of schools and PE teachers—which had quietly been achieving notable success in getting students across England to be more physically active during school hours, have been abandoned; playing fields in some areas have been sold off; and school sport targets have been removed. We heard earlier this month that the borough that hosted the Olympic games is the least physically active in England.

[Grahame M. Morris]

Will my hon. Friend acknowledge the impact that cuts in local government have had, particularly on youth services? In national youth week last week, a number of youth clubs, including in Peterlee in my area, were reporting that they may have to close because of funding cuts.

[Luciana Berger]

I will move on to that point in a second. I was interested in the remarks made by the hon. Member for North Swindon (Justin Tomlinson). I have seen first hand some young people in my constituency who have taken part in the national citizen service, but that is just a few young people. At the same time, throughout the country, we have seen devastating cuts to our youth services. I want all young people to have access to good services. In a moment, I will mention my concerns about local authority cuts.

I should be interested in hearing from the Minister what work the Government are doing to mobilise all the different sectors, industries and organisations that have a role in getting Britain moving. My hon. Friend the Member for Easington mentioned people with dementia. We need particularly to pay more attention to and focus more on older people.

I am keen to hear what the Government are doing to encourage councils, which have the delivery system, to open up their parks, improve access to leisure centres and swimming pools, and make walking, running and cycling a key consideration of developments. However, I echo the concerns of my hon. Friend the Member for Easington about cuts sustained by local authorities throughout the country. My own area in Liverpool has had its budget cut by 56% and it is struggling to do all those things well.

We know that small adjustments to workplaces can make active travel or exercise before or after work a much more realistic option. What work are the Government doing with employers so that workplaces can become more physical activity-friendly? I have asked a number of questions about the health at work programme, and I was disappointed to learn from a parliamentary question that no records are being kept of the number of businesses that are becoming good health at work employers. That is a key issue, which needs more attention and resource directed towards it.

What work are the Government doing with sport governing bodies to ensure that the great success we have enjoyed at the elite level is matched with the same success at grass-roots level? I, for one, enjoyed taking part earlier this year in the “Back to Netball” programme, and I would like to hear about more projects like that that the Government are encouraging across the country—not only for young people, but for adults.

There is a particular concern and challenge around young people at college or university and the differing costs of accessing physical activity and organised sport in places of higher and tertiary education. In the absence of school sport partnerships and compulsory minimum numbers of hours of physical education in schools, how will the Government ensure that sport and activity are a feature of every school, with quality sports coaching and provision in all schools?

I echo the concerns raised by my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley) and the hon. Member for Romsey and Southampton North (Caroline Nokes) about female participation in sport and physical activity. We know that there is a gap between the number of men and the number of women who take part, and I would be keen to hear from the Minister what the Government are doing in that area. Finally, what action are the Government taking to promote active travel and create environments where people are more likely to walk or cycle for short journeys?

With the right support and direction from Government, getting Britain moving is a single, simple, positive goal that the whole country can get behind—a goal that has the potential to shift our national culture. The issue is not about finger-wagging or telling people they cannot do something they enjoy; it is about promoting a positive activity that people can feel good about and an affordable route to good health and well-being for the whole population. It is the most cost-effective way of making our public services and our NHS sustainable now and in the future.

Oral Hormone Pregnancy Tests

Luciana Berger Excerpts

Thursday 23rd October 2014 Commons Chamber

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

I thank my hon. Friend the Member for Bolton South East (Yasmin Qureshi) and the other sponsors of the debate for ensuring that the House discusses an issue that has been ongoing and unresolved for 40 years. I greatly admire my hon. Friend for her tireless campaigning on behalf of the families, who have never received the answers they deserve. I thank other Members for their thoughtful contributions, which are testimony to how much the issue has moved those in all parts of the House. I also pay tribute to Marie Lyon, chair of the Association for Children Damaged by Hormone Pregnancy Testing, who has never given up what has been a real struggle to get to the bottom of what happened and why. I had the privilege of meeting Marie and hearing her own story.

Today I speak not just on behalf of my party’s Front Bench and as a member of the shadow health team, but in my role as a local constituency MP. I was visited in Liverpool by my constituents Pat and Terry Hughes, who told me their story, which I have their permission to share with the House. Pat had taken the oral hormone pregnancy test, primodos, in 1971, and her daughter Katherine was born by caesarean in October of that year. When Pat came round from the operation, she was told that something had gone horribly wrong. Katherine had been born with no gullet and no back passage. She had kidney problems and disfigured feet. Very tragically, Katherine survived for just two hours. Pat and Terry never had the opportunity to see their baby. I was incredibly moved to hear that story about Pat, Terry and Katherine’s experience, and about Pat and Terry’s immense bravery, but also about their determination to find out why Katherine was born the way she was.

As we have heard, Pat and Terry Hughes are not alone. Many hon. Members in all parts of the House have shared their constituents’ stories. It is worth reminding the House of how many stories we have heard. We heard from my hon. Friend the Member for Bolton South East about Nichola Williams. The hon. Member for Aberconwy (Guto Bebb) told us about his constituent Mrs Roberts and her son Garry. My hon. Friend the Member for Makerfield (Yvonne Fovargue) shared the story of Mr and Mrs Tilly and their son Stephen. My hon. Friend the Member for Coventry North West (Mr Robinson) talked about Christine Pettifer. The hon. Member for Enfield North (Nick de Bois) spoke on behalf of his constituents, Chris Gooch and her daughter Emma-Victoria. My hon. Friend the Member for City of Durham (Roberta Blackman-Woods) spoke on behalf of Mr and Mrs Chapman and their daughter Margaret. The hon. Member for Romsey and Southampton North (Caroline Nokes) talked about her constituent Vicky. My hon. Friend the Member for Hayes and Harlington (John McDonnell) spoke on behalf of his constituent Kulvinder Sidhu. My hon. Friend the Member for Airdrie and Shotts (Pamela Nash) spoke on behalf of her constituent Mrs Rose Stallard and her daughter Elizabeth.

Those are just some of the many hundreds of individuals and families who have endured for more than 40 years not just the disabling physical conditions but an overriding sense of injustice. We are here today to determine whether there is a case to answer, whether there are unanswered questions, and whether there is information out there that might help fill in the gaps. I think that the case is clear.

Let me summarise the points we have heard. We have heard about the drug itself. Like the hon. Member for Enfield North, I am not a medical professional, but we do not need to be doctors or scientists for alarm bells to ring when we hear that a drug that was approximately 40 times the dosage of a contraceptive pill prescribed today was then prescribed to be taken by pregnant women twice within the course of 12 hours.

We have heard about the many women who took the pill at the time and who went on to suffer instant miscarriages. Thousands more gave birth to babies with missing limbs, abnormalities in their internal organs, brain damage, and heart defects. Many of those children died before reaching adulthood. Of course, many mothers who have not taken this pill also gave birth to babies with disabling conditions such as these, but the scale of the proportion of women who had taken the drug and who experienced complications gives rise to some serious questions. There were between 500 and 700 UK members of the Association for Children Damaged by Oral Hormone Pregnancy Tests, although it is thought that the true number of alleged victims may be in the thousands. The Government have estimated the number to be 3,500. In Germany, where a primodos equivalent was distributed, another 500 families are fighting for their claims to be heard.

We have heard about the studies on the drug that were undertaken at the time. In 1968, the Royal College of General Practitioners sent a letter to Dr Inman of the Committee on Safety of Medicines stating that 10% of abortions recorded after primodos were unlikely to be due to chance. The committee received a letter from the Usher Institute of Public Health in Edinburgh, which had concerns about its study on rats and abortions. It stated:

“Primodos should be withdrawn from use.”

In 1968, the drug company’s lead UK scientist wrote to the parent company in Berlin:

“it is extremely disturbing that the results of statistics, human studies and other studies all point clearly to the possibility that Primodos may interfere with a pregnancy.”

Those are just some of the studies and warnings that were received throughout the 1960s and early ’70s, and we have heard from many hon. Members on both sides of the House about further representations and studies that were done at the time.

That takes us to the crux of the debate: the significant delays in communicating those warnings. By the early 1970s, primodos was no longer authorised as a pregnancy test. In fact, it contraindicated for use in pregnancy, meaning it was declared that it should not be taken during pregnancy. Despite that fact, primodos continued to be used as a pregnancy test until 1975, when the Committee on Safety of Medicines finally wrote to doctors to warn them that the drug “may cause congenital abnormalities”. A warning was placed on the packet, saying it was

“not to be used during pregnancy...may cause congenital abnormalities”,

but it was not until two years later, in 1977, that the committee wrote to GPs stating that the “association has been confirmed”. In 1977, there were 7,038 prescriptions of primodos to pregnant women. A 1975 paper for the World Health Organisation questioned why research on such a critical issue, published in the late 1960s, was not followed up for many years.

It is worth reiterating that the authorities in Sweden, Finland, Germany, the USA, Australia, Ireland and Holland issued warnings and took action on hormone pregnancy tests as early as 1970, five years before any warning was issued in the UK, despite the fact that the Committee on Safety of Medicine was the first medical authority to know of the hazard.

Let me be clear: the point today is not why this drug was ever allowed to be prescribed in the first place, although there are some very serious questions hanging over that. No one is questioning the GPs who prescribed the drug. Why would they question the safety of the medicines and drugs approved by the Committee on Safety of Medicines? The problem is why, after so many warnings, and after it lost its licence to be given to pregnant women, there were so many delays in communicating that information to GPs. It was that delay that meant that so many women continued to take the drug long after it was known to be unsafe. Had the drug been withdrawn when the warnings become clear in 1970, my constituent Pat Hughes would not have taken it in 1971.

Why are we here? Why has this case not been resolved before now? We have heard from many Members that an opportunity the group had to mount legal action—which was supported by Lord Ashley, the then Labour MP for Stoke-on-Trent South—against the pharmaceutical company Schering had to be abandoned before it got going, when the Legal Aid Board said it could not continue to provide public funding because it felt the weight of the argument was in favour of Schering.

That case, however, was more than 30 years ago. Just because the evidence we have knowledge of is insufficient does not mean there is not a case for investigating the issue further and trying to find out more. That is why we are here: to call for the full disclosure of all the documents held by the Government relating to this drug.

There are real challenges in obtaining scientific proof of a causal link, but the facts that we do have are incredibly compelling. The drug has been withdrawn, so it cannot be tested on women, and those women who were affected have gone back to their doctors for their records, only to find that they are no longer there, as my hon. Friend the Member for Makerfield has said. I will not speculate on why the records are not there any more—I will leave it to Members to draw their own conclusions—but I understand that the BBC has made a documentary to expose that particular issue.

The situation leaves us with a real problem, and not just for those families affected: this is a matter of principle about the integrity of how we do things in this country. Marie, the chair of the Association for Children Damaged by Hormone Pregnancy Testing, explained to me that whenever she visits a doctor now, she questions everything that is prescribed to her. She has lost trust. These families want to prevent this from ever happening again.

The primodos case also raises wider questions about the safety of medicines. It is not acceptable to have such a shadow of doubt hanging over the impact of a drug that was licensed, prescribed and taken by women without due and proper process. If there are documents relating to this drug, it cannot be right that they are not made publicly available.

I want to finish by coming back to Marie Lyon, my constituents Pat and Terry Hughes, and all the other families who are still looking for answers. Feelings of guilt and injustice have followed them throughout their lives. They had 40 years of grieving for the children they lost, or of caring for those who survived. As my hon. Friend the Member for Airdrie and Shotts said, these families are getting older. The parents are now heading into their 70s, and they are worrying about who will take care of their children when they are no longer here.

The families still do not have any answers. This cannot be right. They need answers not just for themselves, but to ensure that this can never happen again. The petition signed by hundreds of people, which has been handed in to No. 10 Downing street, shows that that goal is supported by people across the country. Today’s debate has demonstrated that Members from both sides of the House are clear about what needs to be done to achieve it. It is a very reasonable request. It is important that the documents are released and that they are reviewed by an independent panel. I wholeheartedly urge the Minister to commit to making that happen. I look forward to his response.

Oral Answers to Questions

Luciana Berger Excerpts

Tuesday 21st October 2014 Commons Chamber

[Norman Lamb]

Yes, I agree that it is totally unacceptable for patients to be sent a long way away from home. In children’s services, we are investing £7 million extra this year to produce 50 more beds, and we are holding NHS organisations to account to ensure that they provide beds locally so that people do not have to travel long distances.

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

Research published yesterday by the Centre for Mental Health and the London School of Economics shows that perinatal mental illness is costing our economy more than £8 billion each year. Does the Minister think it is acceptable that half of mums do not have access to a service, are being separated from their babies, are being forced to travel hundreds of miles for a bed, or are not getting any help at all? What is he going to do about it?

[Norman Lamb]

The position has actually improved significantly. Last week, I visited a fantastic perinatal mental health service in Torbay where mums are getting support locally, as, indeed, they should be. I totally agree with the hon. Lady that it is unacceptable that people have to travel long distances, but across the country things are changing, and changing rapidly.

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.