Foetal Valproate Spectrum Disorder: Fatalities
Christian Wakeford Excerpts(2 years ago)
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Caroline Nokes (Romsey and Southampton North) (Con)
I start by expressing my thanks to Mr Speaker for granting this Adjournment debate. It is not the first time we have debated the issue of foetal valproate spectrum disorder in this House or in Westminster Hall, but this time we have added fatalities to the title of the debate. It is stark, and deliberately so, because this year for the first time a coroner has listed it as a contributing factor to a death.
Jake Aldcroft was just 21 when he died in April this year after an infection triggered by problems with his kidneys. The coroner listed foetal valproate syndrome as a contributing factor to his death because of the physical damage done to Jake as an exposed baby, which meant that his bowel and bladder did not work properly and he relied on urostomy and colostomy bags. He had also suffered brain swelling that needed a drain. Jake did not experience pain in the normal way, which would have triggered the alarm sooner. That meant that when he arrived at hospital he collapsed and deteriorated quickly. His mum, Sharon Aldcroft, has been clear that she was never warned about the dangers of valproate when she took it while pregnant with Jake, who was diagnosed with FVSD as a baby.
Christian Wakeford (Bury South) (Lab)
I thank the right hon. Lady for raising this important topic. The fact that the warnings are still not being displayed on pharmacy prescriptions is truly shocking and needs to be corrected. Does she agree that if there is one clear message we can send from this House, it is that doctors and chemists need to be doing what they should be doing and warning any patient of the risks of this drug?
Caroline Nokes
Of course, the hon. Gentleman is right. One of the serious issues to do with sodium valproate has been the lack of warning and information provided to women of child-bearing age.
I have highlighted Jake’s case, with the permission of his mum, because it gives a stark description of some of the very severe problems FVSD can cause for affected babies, and because, as far as I know, it is the first time that it has been listed as a contributory factor to a death. But the horror for many families is that they have to do everything they can to avoid infection and to manage really complex and difficult conditions because they know that, like Jake, their children are vulnerable and could, ultimately, also lose their lives to this totally avoidable syndrome.
Caroline Nokes
I thank the hon. Member for that intervention. I remember being in this Chamber when a predecessor of my hon. Friend the Minister made a full apology in line with the recommendations of the Cumberlege report. Unfortunately, not all of that report’s recommendations have been implemented for some issues, which I will move on to shortly.
I know that I do not have to rehearse this with the Minister because she has been there—and indeed in Westminster Hall—when we have debated this issue before. There have been many debates, statements and urgent questions on this issue and on the related matters of vaginal mesh and hormone pregnancy testing, but this is the first time the syndrome has been found by a coroner to have contributed to a young person’s death—a child’s death.
As the Minister will know, foetal anti-convulsant syndrome is a serious condition in which a baby suffers physical and/or developmental disability from his or her mother taking sodium valproate. Those disabilities can vary and will include minor and major malformations ranging from deformities just of fingers and toes to major physical disabilities such as spina bifida, malformed limbs, skull and facial malformations and malformations of the internal organs.
Christian Wakeford
I thank the right hon. Lady for giving way a second time. We have also recently heard that foetal valproate syndrome can be passed down the generations, so the very unfortunate victim of that awful illness can pass it on to their children as well. Although that has been confirmed only recently, we need to ensure that people are warned about the knock-on effects. Up until probably a couple of weeks ago, no one really knew about that.
Caroline Nokes
The hon. Gentleman makes an important point. The illness can continue down the generations, and that is not yet well understood but it is causing real fear for the families who have been affected so far.
Additionally, problems can include learning disabilities, autism spectrum disorder, delayed walking and talking, speech and language difficulties, and memory problems. It is a long list, and it has now been listed as directly attributing to the death of a young person.
Way back in 2018, the Government commissioned the independent medicines and medical devices review, chaired by the noble Baroness Cumberlege, and its “First Do No Harm” report was published in 2020. That excellent piece of work had nine significant recommendations, some of which have been implemented, some of which have not—or not effectively. As the noble Baroness pointed out, many thousands of women of child-bearing age who suffer from epilepsy are still being prescribed sodium valproate.
Since 2018, when the pregnancy prevention programme was introduced, only 7,900 women are believed to have switched from valproate, which means that today approximately 20,000 women taking valproate are at risk of becoming pregnant. Information from the Medicines and Healthcare products Regulatory Agency indicates that of those 20,000 women, roughly one in three will have a pregnancy. That means that about 400 pregnant women a year have been exposed to valproate and that, of those 400 pregnancies, about one in two will have a child affected to some extent by foetal valproate syndrome.
Caroline Nokes
I will go on to say how important valproate is and how it is imperative that women keep taking the medication, but they need to do so in collaboration with their GP and in discussion with consultants —they need to do so being aware of the risks.
According to the MHRA’s chief safety officer, around three babies are being born every month having been exposed to valproate in pregnancy, although The Sunday Times has estimated the numbers to be double that, at six per month. I pay particular tribute to The Sunday Times, which has worked alongside families and campaigners, such as the Independent Fetal Anti-Convulsant Trust, or INFACT, to make sure that this scandal does not get brushed to one side and forgotten about.
As the hon. Member for Bury South (Christian Wakeford) indicated, new information suggests that valproate will affect their children too. Those mothers who already feel a sense of guilt that their medication has harmed their children now live in fear that it will impact their grandchildren too. Put simply, it is a health disaster that is not going to go away.
Alongside other Members, I recognise the importance of sodium valproate as a drug to control epilepsy. It is crucial for some patients where other drugs have proven ineffective. At no point have I, or the APPG that I co-chair with the hon. Member for Lancaster and Fleetwood (Cat Smith), or INFACT called for it to be withdrawn, but the controls have to be more effective. We have to do better with the pregnancy prevention programme, and we have to do better at providing the necessary information to women of child-bearing age.
The pregnancy prevention programme is just not working adequately. Information to women is not getting through. Drugs are still being dispensed in plain packaging, without the required warning notices. Many women are still highlighting through the media, through campaign groups and to their Members of Parliament that they were not warned, that they have become pregnant and then, only at that point, have they been told of the possible danger to their baby and advised to have an abortion. First-time mums excited at finding they are pregnant are advised to have an abortion. I know that the Minister, my hon. Friend the Member for Lewes (Maria Caulfield), will find that abhorrent.
There are drugs for other conditions where I have seen far more radical and determined pregnancy prevention programmes. I have previously identified Roaccutane, where women prescribed it have to have long-acting contraception and produce a negative pregnancy test before they can collect a monthly prescription, not to mention sit with a consultant and go through a very detailed explanation of foetal abnormalities and be given a form to sign stating they will have a termination if they get pregnant. That might sound draconian in the case of valproate, but it would at least mean that every woman prescribed the drug would have had the risks spelled out very clearly.
For thousands of families, the damage has been done. At this point, I pay tribute to Emma Murphy and Janet Williams of the INFACT campaign group, who are the women who have kept up the pressure on Government. They are the ones who have kept digging for information on what was known by the authorities and how long ago. They are the ones who persuaded my right hon. Friend the Chancellor of the Exchequer, when he was Chair of the Health and Social Care Committee, to launch an inquiry into the use of sodium valproate, which The Sunday Times has described as a scandal bigger than thalidomide. Why is it a scandal bigger than thalidomide? Because it is still happening. Those babies are still being born to parents who have simply not had the level of warning and practical prevention measures that they need.
That brings me to redress and recommendation 4 of “First Do No Harm”. I know that successive Ministers have decided that redress should come via the courts and medical negligence claims, but I would like us all to reflect a little on that and the added strain it puts on families already caring for a disabled child or, in some cases, children—children who we now know can have their death caused by foetal valproate syndrome.
We know that the costs of caring for a disabled child are high. We know that in this cost of living crisis the energy costs for any family living with a disabled child will be higher. We know that in terms of physical effort and mental anxiety it is simply harder to look after a disabled child. We also know, unequivocally, that the dangers of valproate were known the best part of 50 years ago, so it is especially tough and insensitive to suggest to those same families that redress should be via a courts system that is itself under immense strain and subject to delays.
The noble Baroness recommended in her review not only that an independent redress agency be set up, but that there be separate schemes for the three medicines or devices covered. Specifically, recommendation 4 states:
“Separate schemes should be set up for each intervention—HPTs, valproate and pelvic mesh—to meet the cost of providing additional care and support to those who have experienced avoidable harm and are eligible to claim.”
To my mind, the specific relevance here is around the additional care needed, which we all acknowledge, and the bare fact of avoidable harm.
I have three asks of the Minister, and I look forward to her response. The first is for an acknowledgement that sodium valproate has contributed to a death. A young person has died avoidably, and we need the Government to reflect on the very serious conditions that too many babies were exposed to the risk of. What additional controls does she think should be put in place in the light of the knowledge that valproate has caused a young man to lose his life?
Secondly, the pregnancy prevention programme needs to be more effective. Some 200 babies are at risk every year. Is the Minister satisfied that the programme is adequately effective and that the information is properly communicated to women of child-bearing age? If not, what more is she planning to do?
Finally, we need redress. Back in 2019, the disability equality charity Scope reported that a family with disabled children faces average extra costs of £581 a month. That was three years ago. Fuel inflation and food price inflation have increased since then, and the stark reality is that families with disabled children are struggling. These children were, in the words of the “First Do No Harm” report, “avoidably harmed”. It is no sort of redress to suggest that those struggling families resort to the courts.
My suggestion to the Minister, who I believe is dedicated to her job, works extremely hard and can be very persuasive, is the following.
Christian Wakeford
I thank the right hon. Member for giving way a third time. As we know, both Emma and Janet have unfortunately been blacklisted by the Department of Health and Social Care, so if I could be so bold as to suggest another recommendation, it would be that they are never blacklisted again, to ensure that their voices are listened to, and the voices of those children and mothers are constantly heard.
Caroline Nokes
The hon. Gentleman makes an important point, but I am absolutely confident that the Minister will be very pleased to meet both Janet and Emma. I look forward to her agreeing to do so from the Dispatch Box.
My final point to the Minister is this: the Chancellor of the Exchequer, when he was Chair of the Health and Social Care Committee, was incredibly active on this issue. He launched the inquiry when he was still the Chair. His successor, my hon. Friend the Member for Winchester (Steve Brine), is equally committed and is continuing with the inquiry, and both Janet Williams and Emma Murphy will give evidence to the Committee next week. I would like the Minister to use her powers of persuasion and ability to convince the Chancellor of the Exchequer that he needs to keep going on this issue. He is now in a position where he could put in place the finances to allow a redress scheme to be set up. I urge her to persuade him to do just that.
Oral Answers to Questions
Christian Wakeford Excerpts(3 years, 5 months ago)
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Greg Hands
I can absolutely give that commitment to the people of Delyn. The Government have been very clear that any trade deals must work for UK consumers and businesses, upholding our high regulatory standards. The Government, as I mentioned earlier, have manifesto commitments to no compromise on standards in animal welfare, food safety and the environment.
Christian Wakeford (Bury South) (Con) [V]
The Parliamentary Under-Secretary of State for International Trade (Mr Ranil Jayawardena)
The Secretary of State had a successful visit to Israel herself in the last week of June, and she had productive discussions with her Israeli counterpart, focused on ambitions for upgrading our current trade relationship. As my hon. Friend suggests, I am very keen personally to strengthen our £5 billion trade relationship even further, and I look forward to taking these discussions forward to create further opportunities for British businesses in tech and beyond.
Trade Bill
Christian Wakeford ExcerptsTuesday 19th January 2021
(3 years, 11 months ago)
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Ben Everitt (Milton Keynes North) (Con)
This Bill builds on a really strong platform that we delivered in 2020, despite those headwinds of the global pandemic. Having got Brexit done, we have struck trade deals with 63 countries around the world, covering £885 billion-worth of trade.
We are here to talk about the amendments sent from the other place. On genocide, the United Kingdom has never shied away from protecting the rights of the world’s most vulnerable.
Christian Wakeford (Bury South) (Con)
A lot has been said about the atrocities and, let us face it, genocide going on in Xinjiang. Does my hon. Friend agree that while Lords amendment 3 is not perfect, it is a starting point to address the real human rights concerns? Now is a chance to be the light in the darkness.
Ben Everitt
I welcome that intervention from my hon. Friend. He is right to highlight what is going on in China at the moment. It is an incredibly awful, complex situation. My worry with Lords amendment 3, to address his point, is that it would place our courts in a uniquely difficult position. They would be acting akin to international courts in determining where and when acts of genocide have occurred. Invariably, they will be doing so with unco-operative and oppressive states, as we are witnessing at the moment.
We risk, I think, turning our courts into arenas for foreign nations to play out their foreign policy objectives. The political and diplomatic risks associated with that would go far beyond the intended scope of the amendment, well-meaning though it is. It would be a dereliction of our duty as parliamentarians to place a political burden on our judges. We would undermine the separation of powers that is the bedrock of the political stability of this nation, and it would erode the royal prerogative powers to conduct international relations. That is not something I think any Government could do, and it is not something I can agree to.
On scrutiny, amendment 1 would place limits on negotiators to seek trade deals with flexibility. In a rapidly changing world, fortune will favour the nimble. Dither and delay will not help and will not bring back those trade deals. We are all familiar with deals, no deals and bad deals, but any deal negotiated by a Government is the legacy of that Government. The amendment would remove the responsibility from Government and the obligations would fall between those institutions that I have talked about. Our trade policy would be aimless, not decisive—hesitant, not energetic. If Parliament is not content with the terms of any negotiated agreement, the power remains for ratification to be blocked. The Bill does not change that.
In general, Lords amendments 1 and 3 simply contradict each other. One pulls the centre of political gravity towards the legislature, and the other towards the courts. We would be dismantling a proven structure of approving trade deals of scale at pace.
The Bill in general builds upon our newly acquired status as an independent trading nation. We will be taking a values-driven approach to trade policy, which includes defending, championing and promoting high standards around the world in areas such as food and animal welfare, the environment and human rights. It comes at the beginning of an important and exciting year for the UK. Despite everything that the world has thrown at us and at itself over the last year, this year can be the UK’s year: more trade deals; the G7; the G20; and leadership of the COP26. This is Britain’s year, and the Bill goes a long way to kick-starting us into that year.
Global Britain
Christian Wakeford Excerpts(3 years, 11 months ago)
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Elizabeth Truss
My right hon. Friend makes a very powerful point. Allies such as Australia, South Korea and India will be key to forging that group of democratic nations who can stand up for democracy, human rights and fair and free trade, and, of course, we are very committed to working with them this year.
Our new global tariff, as I said, will eliminate tariffs on more than 57% of imports. In particular, it will eliminate tariffs on 100 environmental goods. In short, our new tariff regime is lower, simpler and greener.
Furthermore, we will be working with our friends and family across the world to drive forward free and fair trade, setting the global standard for trade in the 21st century. We are already in deep negotiations with the United States, Australia and New Zealand, and, this year, we will apply to one of the most dynamic trading areas on earth—the Comprehensive and Progressive Agreement for Trans-Pacific Partnership. Joining is part of our plan to grow our economy by making it far easier for British goods to reach our friends in Asia and the Americas. This high standards agreement would align the UK with some of the world’s fastest growing economies in a free trade area covering nearly £9 trillion of GDP. We will also deepen our relationships with countries such as Canada, Mexico, South Korea and Israel. As well as this, we are working closely with India, the world’s largest democracy, on an enhanced trade partnership, reflecting our mutual interest in technology and innovation. We are also in talks with Brazil and our allies in the Gulf.
Christian Wakeford (Bury South) (Con)
While we are talking about the real opportunities for growing Britain’s trade power across the globe and while my right hon. Friend has touched on the aspect of Israel and the Gulf, let me say that we have rightfully been world leaders in soft power and aid during many generations and this should continue, but that we also need to lead in terms of diplomacy. Will she look at taking this back to the Cabinet to consider what we can be doing to expand the Abraham accords to bring not only peace to the middle east, but further trade and aid to that location as well?
Elizabeth Truss
My hon. Friend makes an excellent point. He is right that trade is the key not just to prosperity, but to peace and co-operation between nations. I want to reassure the House that we will ensure that no country is left behind without the benefits of free and fair trade with the United Kingdom. Later this year, we will be launching an emerging markets trade scheme, which will offer the lowest-income countries a better deal when they are trading with the UK. It will be more generous than the EU scheme and it will help those countries on to the ladder towards prosperity through the enterprise and ingenuity of their people.
We want to encourage British businesses to take advantage of all the opportunities that we have either negotiated or are negotiating. Therefore, we will be loudly and proudly championing exports in key industries from food and drink to services in technology trade. We have a network of trade advisers across the country ready to help our businesses go global and they can be proud to put the Union Jack on their pack, which is one of the most recognised symbols in the world. With our great campaign, we are showing partners worldwide that Britain is ready to trade. In December, the Prime Minister launched our new Office for Investment under the leadership of Lord Grimstone. It will work tirelessly to secure investment in every nation and region across Britain, backing jobs and livelihoods. More than 56,000 new jobs were created last year through foreign investment in the UK, with a further 9,000 others secured. We will also be founding our first new free ports, which will drive enterprising growth in port cities and towns across the country as we turbo-charge trade across the world.
Of course, many are sceptical about globalisation and the benefits of trade. One reason why they are sceptical is that too many unfair practices and cheating have been allowed to undermine real free trade. That is why we are establishing the Trade Remedies Authority, headed by Oliver Griffiths, to protect UK industries from unfair practices. It is not right, for example, that ceramics manufacturers in Stoke-on-Trent can be undercut by goods subsidised by state-owned enterprises, that our innovators can have the fruits of their work taken under forced technology transfer, and that goods can come into this country that have been produced through forced labour in abhorrent conditions. That is why we are pushing the World Trade Organisation for greater transparency and reform of the rules, and by joining CPTPP, with its ambitious digital and data provisions and clear rules, we will pile further pressure on the WTO to reform.
As an independent trading nation, we are setting our own path and rejecting the twin errors of values-free globalisation and protectionism.
Continuity Trade Agreements: Parliamentary Scrutiny
Christian Wakeford Excerpts(4 years, 1 month ago)
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Urgent Questions are proposed each morning by backbench MPs, and up to two may be selected each day by the Speaker. Chosen Urgent Questions are announced 30 minutes before Parliament sits each day.
Each Urgent Question requires a Government Minister to give a response on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
Greg Hands
I have an excellent relationship with the Welsh Government: first with Baroness Morgan and more recently with Jeremy Miles. The hon. Member is quite right that international trade is a reserved matter, but it does impact with devolved competence. I believe that the Welsh Parliament either has or will be recommending legislative consent to the Trade Bill, which I think is testimony to how well we are working together in the interests of all of the people of Wales.
Christian Wakeford (Bury South) (Con)
I appreciate my right hon. Friend’s comments on this topic. I also welcome progress on continuity trade agreements so far as a first step to more comprehensive trade deals in the future. Does he agree that we cannot force countries back to the negotiating table and we must not do any deals at any price?
Greg Hands
My hon. Friend is quite right: it takes two to tango, and that is as true for international trade agreements. If the partner does not want to negotiate, of course we will speak with them and use all the levers we have to try to get them to the table, but at the end of the day, if the partner does not want to negotiate, I am afraid that can happen.
Gender Recognition Act Consultation
Christian Wakeford Excerpts(4 years, 2 months ago)
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Urgent Questions are proposed each morning by backbench MPs, and up to two may be selected each day by the Speaker. Chosen Urgent Questions are announced 30 minutes before Parliament sits each day.
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Elizabeth Truss
These crimes are appalling, and that is why the Home Office is taking very strong action to address them.
Christian Wakeford (Bury South) (Con)
I welcome my right hon. Friend’s statement, and I echo what my hon. Friend the Member for Carshalton and Wallington (Elliot Colburn) said: while this is a very important step, it cannot be the destination; it can only be a step in a long journey. Does my right hon. Friend agree that under-18s should receive specialist support, and can she outline some of the measures that will be taken?
Oral Answers to Questions
Christian Wakeford Excerpts(4 years, 7 months ago)
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James Heappey [V]
People in the overseas territories will be reassured to see their plight being raised by my hon. Friend in the House today. HMS Medway and RFA Argus are already on post in the Caribbean, but additional naval assets and personnel are on standby. The commitment of our armed forces to support the overseas territories in times of pandemic or national disaster, or whatever else, is unwavering.
Christian Wakeford (Bury South) (Con)
Andrew Gwynne (Denton and Reddish) (Lab)
The Minister for Defence People and Veterans (Johnny Mercer) [V]
I have used this unprecedented situation to continue to modernise and improve our support to veterans in the UK. Last week, I launch the first stage in placing veterans’ care in the palm of the hand of every veteran in the country, with the launch of the smartphone application of Veterans UK. I have also secured £6 million of funding from the Treasury for service charities at this time.
Christian Wakeford [V]
Although the UK was unable to celebrate VE Day as originally planned, because of the threat of covid-19, it is still important that we remember and support the veterans who bravely played their part in fighting for peace and who sacrificed so much for our freedom. The UK’s armed forces compensation scheme, which helps veterans claim for injuries obtained while in the armed forces, was temporarily paused because of the covid-19 lockdown. Can the Minister assure my constituents that payments will be made as soon as possible? When will those payments be made?
Johnny Mercer [V]
I thank my hon. Friend for his question. I am afraid he may be slightly misinformed; we have not missed any payments. We made 470,000 payments last month. Veterans’ care has not been suspended in the UK. We have, as the Secretary of State alluded to earlier, changed the way we provide services, but I am unaware of a single veteran currently in the care of Veterans UK who has not had their need met during this time.