That this House has considered the second anniversary of the Hughes Report.
Although it is a pleasure to open this debate under your chairship, Dr Allin-Khan, I do so with a sense of déjà vu, because we have been here before, on the anniversary last year and in debates on the Cumberlege review before that. The issue of redress for the victims is a well-trodden road.
I start by paying tribute to the many individuals who have campaigned tirelessly for justice and change, and to prevent their experience from happening to others. I thank the Patient Safety Commissioner, Professor Henrietta Hughes, for the work she put into her report. She is with us in the Gallery today, along with many campaigners. I put on the record my thanks to Baroness Cumberlege for her exceptional work, before the Hughes report, to give voice to victims during the two years she led the Cumberlege review. I pay tribute to her for her continuing commitment to the victims.
We are here today because, two years on from its publication, the Government have still not published an official response to the Hughes report. No redress scheme has been implemented and no timeline has been announced. We have repeatedly been told that the recommendations are being carefully considered, yet there is no date, no framework and no mechanism for justice in place. To be clear, the Patient Safety Commissioner did not decide one day to write the report; she was asked to pull it together and to look at the options for redress for those harmed by valproate and pelvic mesh. The report was commissioned by the Department of Health and Social Care in late 2022.
In her foreword to the report, Professor Hughes was clear that, in accepting the commission,
“the case for redress had already been made by the First Do No Harm review so my report would primarily focus on ‘how’ to provide redress rather than ‘why’…Secondly, patients must not be subjected to an emotional rollercoaster, meaning that commissioning this work would inevitably raise expectations and that it would be profoundly unfair to do so if the government had no intention of providing redress.”
I thank the hon. Member for bringing this important debate to Westminster Hall. I secured a debate on the Cumberlege report 18 months ago; I said at the time that I hoped it would be the last time we debated this issue, yet here we are again. Does the hon. Member agree that the emotional impact on the women involved is hugely important? I was approached by a number of constituents in my constituency, including Debbie, who joined me for my debate. It is so important that the review’s recommendations are acted on.
The emotional toll is significant. It is a daily struggle for some of those affected, and they are battling a system.
Right at the start of her report, the Patient Safety Commissioner was clear that she should not be asked to look into the options for redress for those harmed by valproate and mesh if there was no real intention or desire in the Department to make a redress scheme a reality. Why commission the report and raise the expectations of thousands of families if there was never any intention to follow through on the recommendations?
As colleagues know, 30,000 women and children have been harmed, through no fault of their own, by valproate and pelvic mesh. They are paying the price of the failure to keep them and their children safe with immense pain, agony, fear and guilt. Five years on from the Cumberlege report and two years after the Hughes report, the Government have still not confirmed plans to provide financial redress. Financial redress is unfinished business, and it is past time that the Government responded.
Let us not forget that of those affected by valproate and mesh, 85% report not being able to work, 73% report that their finance has suffered as a result, 91% report that their mental health and wellbeing are adversely affected—as the hon. Member for Harlow (Chris Vince) just said—and 88% report that their relationships have been negatively impacted.
Let me unpack that for a second. Those statistics represent my constituent Carol, a doctor by training who was forced to take long-term sick leave and see her health and her career deteriorate. They represent the valproate families who, on top of the physical effects, face the nightmare of child and adolescent mental health services and personal independence payment reassessments every few years, having to explain what foetal valproate spectrum disorder is to every clinician they encounter because it is not widely understood. They represent the heartbreaking situation of one victim who shared with me, in tears, the devastating impact that mesh has had on her ability to be intimate with the love of her life. The lack of a clear timeline for action by the same slow, dismissive system that harmed patients is further compounding their physical and mental pain.
My hon. Friend is making a powerful speech. Although financial redress is an incredibly important part of the Hughes report, it also lays out other important elements, such as healthcare and special educational needs and disability provision. My constituent Debra has two sons. It was only when her second son went to school that the school realised there might be something affecting both boys due to her taking sodium valproate. She had to battle against the system and is now having to drive her eldest son to university because, suffering from autism, he is unable to make that journey using public transport. Does my hon. Friend agree that those recommendations are also an incredibly important part of the Hughes report?
This is about so many different aspects of support. One of the recommendations in the Hughes report that has been drawn to my attention is the one on housing, which is so crucial. My constituent was prescribed sodium valproate during pregnancy. Her son, who is now 25, lives with foetal valproate syndrome, requires 24/7 support, and will do for the rest of his life. My constituent said that even relatively modest adjustments to their home and some specialist equipment could make a real difference, but she has not found any way of getting funding for that. Does the hon. Member agree that housing is also a really important area for us to look at?
I do agree, and I thank the hon. Member for raising it.
I know that many colleagues present have been championing this cause for years. There is a string of parliamentary questions going back to the launch of the report two years ago, asking for progress updates. The Patient Safety Commissioner herself used her statutory powers for the first time, in October last year, to ask for more detailed answers from the Department of Health and Social Care. The responses were published in November and just a few weeks ago in January. We now know that there have been meetings, roundtables and briefings, but no progress on redress. If I am reading between the lines of these responses correctly, it is the dead hand of the Treasury that is the issue.
Before I conclude, I wish to mention Carol. I have shared Carol’s story before, and I return to it today because it lays bare the cost of years of Government inaction. When I first met her online—I hope she will not mind my saying this—she was a physical wreck. She needed assistance to get a visa to the US during the pandemic for urgent medical treatment following a hysteropexy and rectopexy using surgical mesh. A procedure that was intended to resolve her pelvic organ prolapse instead caused devastating harm.
Carol was left with a serious autoimmune disease, struggling to walk and unable to live her daily life. Her prognosis was bleak, and she needed to have the mesh urgently removed. That treatment was not available to her on the NHS. While suffering from chronic pain, and with limited mobility, Carol accessed private treatment in the United States. A combination of determination, medical knowledge and personal resources allowed her to do so, and Carol is now mesh-free following a successful surgery.
Carol attempted to pursue a clinical negligence claim against the surgeons who harmed her, but multiple law firms declined to act because the same surgeons were advising them on other cases. Those conflicts of interest blocked Carol’s access to justice. In one case, the surgeon who caused her life-changing harm acted as an expert witness in an unrelated mesh case. The judge in that case found that the surgeon selectively chose evidence supportive of the defence, failed to provide balanced evidence, and failed in his duty to the court. That finding is on the record.
Order. This is an incredibly important topic. I remind Members that they should bob if they wish to be called to speak. Because so many Members want to get in, I would be grateful if you can try to stick to approximately four minutes each, to allow everyone to get a say.
It is a pleasure to serve under your chairship again, Dr Allin-Khan. I thank the hon. Member for Chesham and Amersham (Sarah Green) for bringing this issue to the House. I also thank my hon. Friend the Member for Washington and Gateshead South (Mrs Hodgson) for her tireless commitment to this campaign and for her leadership in chairing the First Do No Harm all-party parliamentary group.
Like many Members here, I was present in the debate a year ago on the first anniversary of the Hughes report. Although it has been two years since the publication of the report, the Government have sadly still not responded to it, and justice has still not been delivered for the many women impacted by pelvic mesh and sodium valproate.
In the very first paragraph, Dr Henrietta Hughes makes it clear that the report must lead to Government action. We often hear that justice delayed is justice denied, yet we continue to deny justice to the women who have suffered. Redress must be delivered swiftly. The Hughes report recommends a two-stage non-adversarial redress scheme to provide both financial and non-financial support to women who have suffered avoidable harm due to pelvic mesh and sodium valproate.
Although financial compensation is of course vital—a two-stage scheme would involve a quick initial payment followed by a more tailored scheme for the payment of compensation—just as important is access to appropriate support, including specialist healthcare, and a formal acknowledgment, with an apology, of the harm endured by these women. Dr Hughes laid out in detail how such a scheme can be implemented, and it is for the Government to put one into effect as soon as possible.
Alongside delivering justice for the victims of the mesh and sodium valproate scandals, I urge the Minister and her Department to commit to doing everything possible to prevent future scandals of this sort and to better protect our constituents and communities. I also welcome the work of campaign groups such as Sling The Mesh, and urge the Government to consider making yellow card reporting mandatory so that potentially harmful products can be identified sooner, and action can be taken before damage is done.
I will try to add something new to the excellent start to the debate by both the previous speakers, who showed a great command of the overall situation, by quoting my constituent Emma, who got in touch with me yesterday after learning that the debate would take place. I will briefly summarise her concerns, which she set out in the following way:
“In the main, the point is that so many have been injured, left on NHS waiting lists, paying for prescriptions and transport to and from appointments. Not being able to work—or restricted working hours. Limited access to PIP…Very little support for those who had mortgages due to the benefit system not supporting mortgage costs”
and
“loss of pension contributions, as none of us is getting any younger.”
This lady is exceptionally strong. Despite the injuries she suffered personally, she has been a rock and a leader for other mesh-injured women in or near my constituency. I hold her in the highest esteem; in fact, I salute her courage. What she has to say is, in a sense, an argument that has already been won. The Cumberlege report won that argument, and the Hughes report wanted to recommend what should happen next. I am delighted to see Henrietta Hughes in the Gallery—and seemingly acknowledging that I am right about that difference between the two reports.
Let me briefly quote from Henrietta Hughes’s admirably concise list of 10 recommendations. Recommendation 1 was:
“The government has a responsibility to create an ex-gratia redress scheme providing financial and non-financial redress for those harmed by valproate and pelvic mesh. This scheme should be based on the principles of restorative practice and be co-designed with harmed patients.”
It is a pleasure to serve under your chairship, Dr Allin-Khan. I thank the hon. Member for Chesham and Amersham (Sarah Green) for securing the debate.
On behalf of constituents who have written to me, I want to begin by quoting the comments of the Patient Safety Commissioner for England, Professor Hughes, to the BBC when her report was released two years ago:
“These families weren’t listened to by a system that really turned its back, and fobbed them off with information which led to them not only being harmed, but thousands of others being harmed.”
The Hughes report has still not received a proper response—from either the Conservative Government or current Labour Government—and that is the key. That is deeply disappointing and a massive let-down for all those women and children affected by this scandal. I appreciate that this is an important issue, and it warrants due process, but there has been a two-year wait for a response, not to mention that the wait for the families affected has been so much longer.
Although the Patient Safety Commissioner’s remit extends to England only, this is a UK-wide issue. The regulation of human medicines and medicinal products is reserved. The report said that the Department of Health and Social Care should
“engage with the devolved governments”
on where and how the two-stage redress approach should apply across the UK. The UK Government have indicated that those conversations are taking place. That is encouraging, and I hope that it continues, but we in Scotland have been disappointed by this Government more than once. The well-worn saying applies: justice delayed is justice denied.
This Government promised change, and here is a case in point. The unreserved apology offered by the previous Government in July 2021 was welcome, as was the invitation in December 2022
It is a pleasure to serve under your chairship, Dr Allin-Khan. I thank the hon. Member for Chesham and Amersham (Sarah Green) for securing the debate.
I spoke in last year’s debate to raise the experience of my constituents Paula and Gillian, who had experienced the impact of having pelvic mesh fitted. Unfortunately, not much has changed since then, and Paula tells me she is still living with the devastation that pelvic mesh has caused in her life. She had the mesh implanted in 2012, and between 2020 and 2023 she experienced painful bladder stones that were linked to the mesh. She finally had surgery last year to remove a 3 cm bladder stone, which revealed that the mesh had completely eroded into her bladder. She will need further surgery to remove the remainder of the mesh, and will need to undergo a further recovery period. That story is like many others we have heard.
As I did when I spoke about valproate last year, I would like to thank Emma, Janet and the campaigners who are here today, who do so much in this area. With regard to the Hughes report, the Epilepsy Research Institute continues to ask the Government to allocate dedicated ringfenced funding for research into epilepsy drugs and to ensure that regulatory bodies act swiftly on safety concerns, and that pregnant women with epilepsy have access to the best possible information and care.
I will take us down a slightly different path now because, as some Members know, my wife and one of my daughters have epilepsy. When my wife and I tried to conceive, I saw at first hand the issues women have when they have to come off valproate. My wife was seizure-free for 12 years, and her life was turned upside down when she started having seizures again. Those resulted in her falling all the way down the stairs; falling into a bathroom cabinet and trapping her head—I had to try to disengage her; having a seizure in the bath, after which I had to resuscitate her on the bathroom floor; and having to surrender her driving licence. At one stage, she thought she would never go back to her teaching job, although she has now successfully gone back to it. She will be three years seizure-free this year, mainly because she has gone back on to valproate.
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Such conflicts are not isolated. Conflicts of interest and the closing of ranks among professionals remain a structural barrier to justice for victims. That is just one of the reasons why an independent redress scheme is long overdue. The current system is failing these women, children and families.
I have two questions for the Minister. What conversations are she, her Department and her officials having with the Treasury and Downing Street to make redress a reality for the victims? Will she meet some of the affected families to hear directly from them why redress is so important to them?
I have a particular interest in this debate. Although I have constituents who have been affected, before becoming an MP I worked as a solicitor and specialised in representing women who had been given plastic polypropylene mesh implants for vaginal mesh surgery as a quick fix to treat pelvic organ prolapse and stress urinary incontinence, without being properly advised by the doctors who gave the treatment. All those women did was trust a medical professional who told them they were receiving the gold standard of care, as we all would. The mesh then eroded, cut through vaginal tissue and caused chronic pain, loss of mobility and sexual disfunction, and often resulted in relationship breakdown. Many of those women were unable to continue working and suffered life-changing injuries. Their lives were ruined.
When pursuing legal claims for compensation for these women, I was always acutely aware that compensation and legal costs would ultimately fall on the NHS. A compensation scheme as recommended by the Hughes report would save the excessive costs of litigation that the NHS would have to pay out—money that could then be used for the treatment of patients. I would also like the Government to consider alternative approaches such as an insurance-style levy paid by companies when they bring new products to the market, which would create a dedicated fund for future claims and thereby protect our vital NHS resources while incentivising manufacturers to ensure that their products are of the highest safety standards.
We cannot leave these women in limbo waiting to receive the redress they so clearly deserve. I ask the Minister to please respond to the Hughes report, enact Dr Hughes’s recommendations and ensure that justice can finally be delivered for these women.
“The government should create a two-stage financial redress scheme comprising an Interim Scheme and a Main Scheme.”
Recommendation 4 was:
“The Interim Scheme should award directly harmed patients a fixed sum by way of financial redress. These payments should start during 2025.”
Recommendation 8 was:
“Both the Interim Scheme and the Main Scheme should be administered by an independent body which commands the confidence of patients.”
What is the point of an interim scheme? It is to recognise that there will be tremendous complexity in individual cases, but at least these mesh-injured ladies would get a minimum of help—I think £25,000 has been suggested—straightaway, while the more complex calculations can be done later. Yet despite that being the very point of an interim scheme—that we can do this quickly and work on the harder parts subsequently—we have seen no progress.
What does that remind us of? It reminds me of the Post Office. It reminds me of the infected blood scandal. What do all those things have in common? A large number of people who have been injured in some way or another—either physically, or with their character or freedom damaged, often beyond repair—and who are owed very large sums of money by way of redress or compensation. We know what happens in the end: there is enough public protest to ensure that there is action. I hope that the level of public awareness is no less for this cause than it is for other, similar scandals because all the victims were women. That would be even more disgraceful than that this all happened in the first place.
“to look at what a potential redress scheme could look like.”—[Official Report, 7 December 2022; Vol. 724, c. 478.]
But that was more than three years ago. Of course, this Government rightly deserve praise for acting to redress the problem and offer compensation, albeit slowly in some cases, following the infected blood scandal and the Post Office Horizon scandal. Please do not add this situation to that of the Women Against State Pension Inequality Campaign, the nuclear test veterans and others, where successive Governments have taken a negligent approach.
In summary, I am speaking up primarily on behalf of my constituents. We need urgent action on this report and a proper system of redress for the countless families affected by this scandal. Please let us get on with addressing recommendation 4 of the Hughes report without delay. I hope the Minister will address that in her response.
Those many years when she had seizures and other issues show why research is desperately needed for drugs to control epilepsy. Unfortunately, for many people, valproate is the only drug that allows them to lead a normal life. I have seen that; the rules are there for a good reason, but my daughter, who is 12 and who, as Members may know, has no mental capacity, has had to come off valproate because of the rules. We need to understand these issues and that wider issue, because for many people valproate is the drug they need to support them. That is not to disrespect Emma and Janet for the work they do to support those, including their children and families, who have been so desperately impacted by valproate.
I welcome the noises we have heard recently about forthcoming updates from the Department, but I also say, on behalf of my constituents and the wider community, that we need concrete measures for the implementation of financial and non-financial redress, and I would welcome the Minister’s comments on that.