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Cat Smith (Lancaster and Wyre) (Lab)
It is not the first time that I have had an Adjournment debate on sodium valproate in my 11-and-a-bit years as a Member of Parliament. It continues to be an issue that affects so many, and for which justice still feels so far away.
Given the history of this House debating the topic, I do not intend to spend much time going over the history of the drug, which has been used to treat epilepsy and bipolar disorder since the early 1970s. For the benefit of anyone who is tuning in for the first time, I will go over the brief facts of what happened. The drug is teratogenic and was known to be teratogenic from the time it was first licensed. Despite that, doctors were initially advised that the risk did not justify
“discouraging a woman who needs anticonvulsant treatment from having a child or changing a satisfactory drug regimen when the epilepsy is well controlled.”
The result has been that we have been playing catch-up ever since, with the Valproate Pregnancy Prevention Programme only being launched in 2018, following tireless campaigning from women affected, such as my constituent Janet Williams—who is in the Public Gallery—and her friend and colleague Emma Murphy.
It is difficult to calculate the number of children exposed to valproate in utero since its 1973 licensing. The Patient Safety Commissioner has made an estimate of around 14,000 for the period from 1972 to 2017 in England. Diagnosis often gets picked up when clinicians, or in some cases parents, recognise facial dysmorphic features. Children born with foetal valproate spectrum disorder can have a wide range of physical and mental health symptoms, including but not limited to weak muscles, visual problems, hearing difficulties, difficulties with balance, social anxiety, low energy, heightened sensitivity to noise and difficulties in regulating emotions. One of the biggest health conditions facing people with foetal valproate spectrum disorder is autism. A significant number also have attention deficit hyperactivity disorder, or ADHD, dyspraxia, sensory processing disorder and epilepsy.
It can affect children in very different ways. In some of the most severe cases—I know that the hon. Member for Harrow East (Bob Blackman) has a constituent who is very severely affected—the individual can end up bedbound and very severely disabled. For some children, autism and sensory processing may be more of an issue.
Bob Blackman (Harrow East) (Con)
I thank the hon. Member for introducing this long-awaited debate. I have a constituent, Karen Buck, whose daughter, Bridget Doyle, was born paralysed, is bedbound and suffers from autism. The reality is that there are many victims out there who suffer from a variety of conditions, as the hon. Lady quite rightly points out—not least spina bifida, which she has not mentioned. The problem here is that legal aid for the court case, which was established to try to get recompense for those victims, was withdrawn some 20 years ago. Unfortunately, although commitments have been made time and again to help these people, these mothers are now advanced in age, and the children they have supported will desperately need support when their lives end. Does the hon. Lady think there is now a need for a proper compensation scheme?
Cat Smith
I thank the hon. Gentleman for raising the case of his constituent Karen and her daughter, Bridget. I agree entirely that the time is now. He raises an important point that because this scandal has been going on for so long—the drug was first licensed in the 1970s—the babies who were harmed are no longer babies or even children, but adults with disabilities, whose parents are getting older every year. When I speak to those parents, one of their biggest anxieties is about who will look after their children when they no longer can. That is why we need compensation to be paid out sooner rather than later, because it has frankly already been too long.
I turn to the case for compensation. The case for redress from the Government for the families affected by this maladministration has been conclusively made. This is not the first debate we have had in this Chamber on this matter, and there have been multiple reviews on it. In 2020, the Cumberlege review, established by the previous Prime Minister, Theresa May, found that
“the state and manufacturers have an ethical responsibility to provide ex gratia payments to those who have experienced avoidable damage”.
These payments should be made to cover costs such as
“travel to medical appointments, respite breaks or emergency payments where a parent has to stop working to cover care.”
I pay tribute to the former Prime Minister for her work on this issue, because she really is a doughty campaigner on this.
Liz Twist (Blaydon and Consett) (Lab)
I also have constituents affected by the sodium valproate issue. I wonder whether she agrees that it is a double injustice—first, that the parents, Emma and Janet, had to fight to get recognition and change in the prescription of sodium valproate; and secondly, that they have to fight again to get compensation for the very real damage caused.
Cat Smith
I totally agree with my hon. Friend, but I would go further still. For parents of children with additional needs, the last thing they need is to be fighting a national campaign for justice. They already have enough on their plate trying to cope with their child and ensuring they are accessing the support they need without having to run a national campaign, but that has been the reality for many of the parents—primarily mothers—of children who have been harmed by valproate. That is exactly what they have had to go on and do.
I turn back to the history of the reviews into this scandal. The Conservative Government initially rejected the recommendation that I have just set out; however, in 2022, they had a change of heart when the then Health Minister, Maria Caulfield, tasked the patient safety commissioner with providing options for financial redress. That felt like a real step forward for the campaign at that point.
The commissioner produced the Hughes report in February 2024. It reiterated what we already know. It says:
“The Government has a responsibility to create an ex-gratia redress scheme providing financial and non-financial redress for those harmed by valproate”.
The Hughes report recommended that the Government create a two-stage—
Madam Deputy Speaker (Caroline Nokes)
Before I call the hon. Member to continue, I would just like to say what a pleasure it is to see the Clerk of the House at the Table for his last ever Adjournment debate.
Cat Smith
The Hughes report recommended that the Government create a two-stage financial redress scheme, comprising an interim scheme and a main scheme, with the interim payments commencing in 2025. Those who are paying attention will realise that it is now somewhat later than that. The commissioner further recommended that the payments be made by an independent body that commands the confidence of patients. That point is particularly important. The patients who have been harmed have lost so much confidence, so it is really important to have an independent body administering the scheme, to give them confidence in it being done properly.
Both the Cumberledge review and the Hughes report stressed the need for speed when responding to this issue. That is to a large extent, as the hon. Member for Harrow East (Bob Blackman) set out, due to the time and nature of the scandal. We now have a cohort of adults with foetal valproate spectrum disorder whose parents are finding it increasingly difficult to support their needs, due to their own health and care requirements.
Sadly, over two years on from the Hughes report, the Government have yet to formally respond to it, despite a clear recommendation that interim payments were to have commenced last year. The previous Secretary of State for Health and Social Care, my right hon. Friend the Member for Ilford North (Wes Streeting), gave a television interview with ITV Granada’s Líse McNally in February this year in which he indicated that he wanted to commence compensation payments before the end of this Parliament. It is therefore troubling that, as set out in answers to parliamentary questions from me and colleagues, the Government’s line today remains that
“a decision to provide compensation has not yet been made.”
I want to touch on the responses that colleagues and I have been getting to our written parliamentary questions, because they are increasingly frustrating. It almost feels as though, when Ministers see a written parliamentary question come in with the word “valproate” in it, a stock answer gets lifted off the shelf and given to Members. Some victims have told me recently that they feel quite gaslit by some of the answers to written parliamentary questions; they keep referring back to the same answer. We really need to make progress on this issue.
Does the Minister understand the considerable distress that such uncertainty and inconsistency causes, and will she today make it unequivocally clear that the Government accept the case for financial redress for the victims of sodium valproate, and put in place a clear timetable for delivering financial redress?
My right hon. Friend is a good Minister and will want to do the right thing, but if she needs any more persuading, she can tune into BBC Two at 9 pm on 9 November and watch “Mums v Big Pharma”, which was produced by the same people who made the programme about the Post Office scandal. It shows the human cost of the scandal for so many families, some of whom are in the Gallery tonight. The programme is the perspective of two Lancashire mams who have absolutely had enough and are fighting for justice. If I know one thing about Lancashire women, it is that when we have got our teeth into something, we tend to stick at it, and we will persevere. That especially goes for Janet Williams, who has been campaigning for justice since 1996. It really is time that justice was brought forward for these victims.
In addition to the conversations I have had with victims of the scandal, I have heard concerns raised by those living in Scotland, Wales and Northern Ireland, who feel that the Government have not engaged as well with victims in the devolved nations. Part of that will be because health is devolved to those nations, but although health is a devolved matter, the regulation of human medicines and medicinal products remains reserved. Those victims, too, deserve to be taken seriously and brought with English victims on that journey towards redress, both financial and non-financial. The Government have previously put in place UK-wide schemes for redress, such as for infected blood, and I know that the Minister is well aware of that. Will the Government therefore commit to working closely with victims from Scotland, Wales and Northern Ireland, and with the devolved Administrations, on this matter?
Anna Dixon (Shipley) (Lab)
I thank my hon. Friend for her campaigning on behalf of the victims of this scandal. Is she aware of the report from the Public Accounts Committee that makes recommendations about Government compensation schemes? We looked at schemes, including for the infected blood scandal, and our recommendations were that schemes needed to be designed with the victims, and that there should be independence, just as there is in the case of infected blood. I hope that the Minister, in responding, will take note of that report, and will say how such a compensation scheme could be set up that provides quick redress to victims, in the way that my hon. Friend hopes.
Cat Smith
I commend my hon. Friend for the work that she does, along with others, on the Public Accounts Committee. That report is right to stress both independence as a means of giving confidence to victims, and schemes being designed with victims. These families have already had so much done to them that it is important, when it comes to redress, that they are part of designing the solution. Part of redress, and of getting justice, is no longer having things done to them, and instead being part of designing the solution.
Mrs Sharon Hodgson (Washington and Gateshead South) (Lab)
Apologies, Madam Deputy Speaker, for being late to the debate. The early start caught me somewhat by surprise. As my hon. Friend is aware—she may have touched on this already—the Hughes report is excellent. It gave a blueprint, right down to the amounts involved, for how a redress model could be put in place and facilitated. It has been over two years since the Hughes report. I know that there has been a change of Government, but this Government have been in for over two years now. Does my hon. Friend agree that it is about time the Government came forward and accepted the recommendations of the Hughes report?
Cat Smith
I thank my hon. Friend for all the work that she has done over a number of years on this issue. She has been a doughty campaigner on sodium valproate, and she has the confidence of many of the victims and is very well thought of. I entirely agree with what she says about the Hughes report. It is a very good report that should have been acted on already. It is frustrating that we have been waiting as long as we have.
There were many things in the report on redress, including on non-financial redress. As part of that, we have the pilot clinics in Manchester and Newcastle, which support children and adults who have been affected by valproate. They are pilots, however, unlike some of the other clinics. In the case of mesh, the clinics are permanent, and they are able to provide psychological support as well. The clinics for the victims of valproate are still in trial, and we do not have any outside the north of England. As a north of England MP, I am very glad that the clinics are local to me, but victims of valproate live right across the United Kingdom, and accessing support should not become a postcode lottery. Will the Government update the House on whether the clinics will be made permanent and perhaps expanded to cover a wider geography?
Finally, will the Minister meet me and victims, especially those from the campaign organisation INFACT, to discuss in detail the Government’s long-term intentions in this area? Many of the victims feel that they have been in the dark about what is happening for an awfully long time. We have been in government since 2024, and the time has come; we can no longer drag our feet. Justice needs to be done, and redress needs to be put in place. The families affected are owed no less than that.
I am so glad that you are in the Chair, Madam Deputy Speaker, because you, too, have been a doughty supporter of these victims, and I know that you are fondly thought of, especially by those in the Public Gallery, for your support on this. I am grateful for the interventions from Members on both sides of the House. This truly is an issue that cuts across party politics. Regardless of what colour rosette we wear, we cannot fail to see the injustice that has been done to these families. I would like it to be a Labour Government who deliver redress to these victims.
This scandal has been going on since the 1970s. The time for just talking about this has passed—we need to start acting. The families who have been affected are owed nothing less. I hope that in the Minister’s reply, she will give them some hope, because I am told that hope is back. Let us make sure that means something, and let us have some hope from the Dispatch Box tonight.
The Minister for Public Health and Patient Safety (Dame Diana Johnson)
May I too say how nice it is to see the Clerk of the House in his place? I pay tribute to him for his long service in this place, and wish him the very best for the next chapter.
I congratulate my hon. Friend the Member for Lancaster and Wyre (Cat Smith) on securing this important debate, and thank all hon. Members who have contributed on this sensitive and important topic. We have had important contributions from my hon. Friends the Members for Blaydon and Consett (Liz Twist), for Shipley (Anna Dixon) and for Washington and Gateshead South (Mrs Hodgson), and the hon. Member for Harrow East (Bob Blackman). You too, Madam Deputy Speaker, have been a long-standing supporter on this issue.
My hon. Friend the Member for Lancaster and Wyre has been working tirelessly for many years on behalf of her constituent Janet Williams and all the campaigners and the families, including Emma Murphy, to whom she referred. We need to ensure that the voices of women and families are heard, and that they are at the heart of our discussions and debates. I agree with my hon. Friend about the perseverance of women, and there is clear perseverance here. I have been very moved by the stories I have heard, including before coming into office, and the more I look into this matter, the more tragic it appears to be. I will watch that television programme on 9 November that my hon. Friend referred to.
As my hon. Friend would expect, since becoming the Minister for Public Health and Patient Safety, I have been briefed by officials on the Hughes report and the progress we have made so far. Of course, I am happy to meet my hon. Friend and the families affected. I am also determined to make progress on the Government’s response to the Hughes report, and I will of course work closely with devolved Governments in doing that because, as has been said, this affects all parts of the United Kingdom, so we need to work together. My predecessor, my hon. Friend the Member for Glasgow South West (Dr Ahmed), established a direct line with the Patient Safety Commissioner to start to drive this work forward. I think that was the right approach, and I look forward to meeting Professor Hughes shortly.
I am conscious that it has been more than two years since Professor Hughes published her report, and more than five years since the independent medicines and medical devices safety review was issued by Baroness Cumberlege. We know that the lives of women, children and their families have been profoundly changed. Their voices must be heard as we address these issues with the urgency demanded.
James Naish (Rushcliffe) (Lab)
My constituent Matthew Cox has foetal valproate syndrome. This time last year, he wrote to the Prime Minister. It took several months for him to get a response. He wrote again to No. 10 in March, and I wrote to the Health Secretary in July. There have been no responses, and the response that Matthew did receive was not an appropriate response for someone with learning difficulties. Will the Minister take Matthew’s case away specifically, and ensure that he gets the response he has been looking for? He and his mum welcome the hope that a new Labour Government brought on this; it is essential that we deliver for them.
Dame Diana Johnson
I will of course take that away. As a Minister, I have made it clear that we should respond in a timely way not only to Members of Parliament, but in other correspondence, and in a way in which people can understand what is being said to them. I absolutely take my hon. Friend’s point.
Moving on, we are determined to build a system that listens, that hears and that will act, and we need to do that with speed, compassion and proportionality. As someone who has fought hard for the compensation due to the victims of the infected blood scandal, I fully understand the strength of feeling on this matter, and I can also appreciate the frustrations of the families and the campaigners. This is a complex and sensitive issue that requires careful co-ordination across Government.
The support we offer to those who have suffered profound harm must be meaningful and responsive to their needs. The Government are clear that those affected have already waited far too long for answers. While a decision has not yet been taken to provide financial redress, my priority is to drive these discussions forward with greater urgency, while ensuring that any decisions we take are underpinned by a thorough assessment of the available options, with continued engagement across Government. Our discussions so far have considered the scope, affordability and practical challenges of a redress scheme, so I will say a few words about non-financial redress.
Cat Smith
I seek some clarity. The Minister says that the decision has not yet been made, yet a previous Secretary of State for Health and Social Care, the right hon. Member for Ilford North (Wes Streeting), told ITV that he was expecting financial redress by the end of this Parliament. Can the Minister just clarify that, because it seems inconsistent?
Dame Diana Johnson
My understanding of what the previous Secretary of State said is that he wanted to see progress within this Parliament. I am mindful of the Hughes report, which set out clear recommendations around redress, and I have just tried to set out that that is the avenue I am pursuing with some speed, looking at what the options are. I hope that that answers my hon. Friend.
Liz Twist
I know from the Minister’s previous work that she will be conscious of the issues, but we are two years on from the Hughes report, which made it clear that we need to act. This is an important issue, and it feels like a group—primarily of women—are being left to one side to wait their turn or bide their time. Can the Minister assure me that she will be in the Department, making sure that we get a real answer on financial and other redress? I am sure she will be doing that, but we need to see some action.
Dame Diana Johnson
I fully understand and appreciate the frustration, because it has been two years since the report was published. I will do my very best. I know that my predecessor, my hon. Friend the Member for Washington and Gateshead South, who is in her place, was also looking at what more we could do to speed up matters. I give an undertaking to this House that I will do my very best to make sure that we make progress on redress and all the recommendations in the Hughes report.
Dame Diana Johnson
I can see that my hon. Friend wants me to give way, and I am happy to.
Mrs Hodgson
I know that my right hon. Friend, with her experience of leading the infected blood campaign, is best placed to deliver for all these victims of mesh and valproate—maybe Primodos as well, although that was not covered in the Hughes report. I would like to add one other thing to her list, if I may, and that is payments from big pharma to the health sector. They really do have to be disclosed. At the moment, they are ambiguous and misleading, and lump sum payments can hide a multitude of payments. Does she agree that, to prevent future injustices, it is time for the Government to enact a statutory approach to payment transparency in the health sector?
Dame Diana Johnson
I am very happy to discuss that with my hon. Friend and see what we can do.
I want to deal with non-financial redress. It is important to recognise that people need support now. The Department is working with the NHS to put in place a range of measures to support the women and their families, alongside action to strengthen the safe prescribing of sodium valproate. In February, on the second anniversary of the Hughes report, the Minister for Secondary Care, my hon. Friend the Member for Bristol South (Karin Smyth), set out how the Department is addressing their needs by improving the clinical services and treatment that patients receive, commissioning further research and initiating long-term preventive measures. I would like to update colleagues on those initiatives.
First, on the improvements to services and treatment, the number of women who have been prescribed sodium valproate has gone down since 2018, although there is a cohort who have already been affected and require specific treatment. We must ensure that our healthcare system is shaped around their needs and experiences. Shortly after the Government came to office, NHS England began operating the foetal exposure to medicines pilot service in hospitals in Manchester and Newcastle, to which my hon. Friend the Member for Lancaster and Wyre referred. The project is providing multidisciplinary assessments, diagnosis and treatment planning, and its findings will inform the way we do this at a national level.
The proposed extension of the pilot project includes setting up a third site and an independent evaluation of the pilot, because we should not be marking our own homework. That should give us the evidence we need to determine whether a nationally commissioned service could be implemented across England. This approach balances the need to improve support for affected individuals and families with the requirement to ensure that any future national service is evidence-based, clinically effective and financially sustainable.
Bob Blackman
It is good news that the Minister is considering a national proposal. Will she undertake to have a meeting with the long-suffering victims of this scandal, who have been caring for their children for many years without support, in such desperate times, to show her commitment to doing what needs to be done for them? I think she will learn quite a lot from such a meeting.
Dame Diana Johnson
Of course I will. I would be very interested in doing that and learning more, and I am sure my office will be in touch with the hon. Gentleman about that.
Secondly, on research and development, we are working with clinicians from the pilot and other experts to see how we can improve the services available to affected patients.
Finally, on prevention, NHS England and the Medicines and Healthcare products Regulatory Agency have introduced strict measures to minimise valproate exposure during pregnancy, including pregnancy prevention programmes, and prescribing controls and specialist counselling for women who may become pregnant while taking the medication.
Let me close by again paying tribute to all the families whose lives have been changed forever by sodium valproate and the other issues that were set out in the Hughes report around pelvic mesh. I hope I have made clear how determined we are to respond to the Hughes report with the urgency and the compassion that those families absolutely deserve.
Madam Deputy Speaker (Caroline Nokes)
I was overseas when the tributes to the Clerk of the House were made last week, so I would just like to correct the Minister: the Clerk of the House cannot be very long serving, because he is clearly an incredibly young man and far too young to retire. I add my thanks to him for all the support and help he has given me in this role.
Question put and agreed to.