Westminster Hall
Monday 22nd June 2026
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16:30
Speaker 1
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Speaker 1
Order. Before we begin, I will remind members as the rules of behavior. Note the privilege of freedom of speech in a debate allows us to conduct our debates without fear of outside interference. But it is a freedom which should be exercised a responsibly in the public interest and taken into account the interests of others outside of this House. Additionally, paragraph 21.2 of Erskine May states good temper and moderation are the characteristics of parliamentary language. Again, with reference to the rules of behavior, there is no hard and fast list of unparliamentary words.
Whether someone is said to breach your order depends on the context. Any abuse or insulting language used in debates will be required to be withdrawn immediately. Of the public that they are here to observe proceedings and not participate or comment. Demonstrations of approval or disapproval are not permitted, and any interruption from proceedings will result in removal from the gallery. This debate is very oversubscribed and they will be limited time. And if your name is not on my list to speak, you will not be called.
Anyone who is on my list, I still expect you to stand and any interventions will be minimum in response and in asking. I hope I've made myself perfectly clear on. That note, I call John Lamont to move the motion.
Whether someone is said to breach your order depends on the context. Any abuse or insulting language used in debates will be required to be withdrawn immediately. Of the public that they are here to observe proceedings and not participate or comment. Demonstrations of approval or disapproval are not permitted, and any interruption from proceedings will result in removal from the gallery. This debate is very oversubscribed and they will be limited time. And if your name is not on my list to speak, you will not be called.
Anyone who is on my list, I still expect you to stand and any interventions will be minimum in response and in asking. I hope I've made myself perfectly clear on. That note, I call John Lamont to move the motion.
16:31
16:32
Speaker 3
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Speaker 3
On a point of order. Miss Harris. Um, this is this is. Criticism of my honourable friend who leads for the Petitions Committee in this matter. But am I alone in feeling distinctly uneasy about this debate?Why is Israel singled out in this way?Why not Gulf countries, Iran, Eastern Europe, or the USA?This is being discussed at a time when the Jewish community are clearly under threat and are suffering numerous hideous attacks. I am not sure I trust the motivation.
Miss Harris, behind the petition organizers, and I very much fear this whole thing smacks of an anti-Semitic conspiracy theory.
Miss Harris, behind the petition organizers, and I very much fear this whole thing smacks of an anti-Semitic conspiracy theory.
16:33
Speaker 1
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Speaker 1
I thank you for your point of order and for notification in advance, but decisions relating to the publication of E-petition and the scheduling of E-petition debates are a matter which properly sits with the Committee. The Petitions Committee itself. If you have not already done so, I would encourage you to make direct contact with the chair of that committee directly regarding your concerns. But as I said at the beginning, and I reiterate, Mr. Speaker, and the deputy speakers regularly remind members in the chamber, however, about the need for good temper and moderation in parliamentary language, as set out in Erskine May, paragraph 2121.
The same rules and courtesy apply in Westminster Hall, and you can be assured I will exercise all authority in making sure they are complied with. Lamont.
The same rules and courtesy apply in Westminster Hall, and you can be assured I will exercise all authority in making sure they are complied with. Lamont.
16:33
Speaker 2
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Speaker 2
I'm very grateful to my right hon. Friend for the point of order. As he will discover during the course of my contribution, I have a great degree of sympathy with the remarks that he has made. I refer members to my register of interests, and whilst I will take interventions later in my speech, I would be grateful if I could develop some of my key points before doing so. This petition was created by Andy Carroll, who has signed. The petition has been signed by over 116,000 people.
I want to begin by making it explicitly clear that I do not support this petition. Indeed, I believe that the proposition before us today raises profound concerns, not because it seeks scrutiny of politics or lobbying, but because of the way in which it frames those concerns and the sinister narratives upon which it draws. This debate raises important questions, not simply about foreign influence or political advocacy, but about the boundaries between legitimate political criticism and conspiracy theories that have historically fuelled antisemitism. Let me also say at the outset that I recognise that many of the people who signed this petition, including the 194 in my constituency, may have done so in good faith.
Many will have believed that they were supporting transparency in public life or expressing concern about the events in the Middle East. I do not question their motives. However, Miss Harris Parliament has a responsibility not only to consider what is being said, but also to understand the historical and political context in which it is being said. We have a duty to recognise when language and ideas echo prejudices that have caused immense harm throughout history. The petition calls for a public inquiry into what it describes as pro-Israeli influence on politics and democracy.
That wording matters. This is not a petition calling for a review of lobbying regulations generally. It is not a petition seeking greater transparency about foreign influence from all states. Indeed, it cynically overlooks the fact that there are campaigns and lobbies operating in the UK in support of almost all countries in the world. It does not ask for a broad examination of how political advocacy works in the United Kingdom. Instead, it singles out one country and, more importantly, invokes a long standing allegation that people who support that country exercise hidden or improper influence over our democratic institutions.
That false accusation has a very long and very troubling history. For centuries, at the heart of antisemitism has been the claim that Jews exercise secret control over governments, political systems, financial institutions, the media or public life. Those ideas have appeared in countless forms throughout history. They have been repackaged and modernised for different generations. But the core allegation remained remarkably consistent that Jews, acting collectively and covertly manipulate political events from behind the scenes. The most notorious example was the fraudulent document known as The Protocols of the Elders of Zion, which purported to reveal a Jewish conspiracy to dominate the world.
Although repeatedly exposed as a forgery, its pernicious influence was immense. It fuelled antisemitic movements across Europe and beyond, and helped to create an environment in which discrimination, persecution and violence flourished. Today, such ideas are often expressed through different language, but the ill intent of its practitioners and its harmful consequences. Harmful consequences on Jews and wider society are all too familiar. Rather than speaking explicitly about Jews, some speak about Zionists. The lobby, hidden influence networks, or pro-Israel control. The packaging has changed, but it is no less insidious in its implication.
Like many of my colleagues, Miss Harris, I have been accosted while walking outside Parliament by so-called peace activists handing out mock banknotes with Bank of Zionism, written on an insinuation of Jewish control of our politics and economy. It is unmistakably racist. But this is exactly the sort of harmful activity and rhetoric which has become commonplace. This sort of message, which today's petition stems from. That is why concerns have been raised by so many across the political spectrum about the framing of this petition.
This is not an attempt to prevent criticism of Israel. It is not an attempt to shield any government from scrutiny. The government of Israel, like every government in the world, can and should be subject to criticism. Its policies can be challenged, its decisions can be debated. Its actions can be scrutinised robustly and vigorously. Indeed, that is entirely consistent with democratic debate. It should be noted that extensive parliamentary time has been spent debating Israel in the year following Hamas's horrific terror rampage of 7th October 2023.
MPs made an astonishing 4369 contributions in the chamber relating to Israel. Now consider for a second that this number was more than double the number of mentions of the National Health Service at 1895. In that same period, Russia's invasion of Ukraine was mentioned, 1449 times. Whilst the appalling suffering unleashed by the war in Sudan only warranted a paltry 225 mentions. The same disproportionate focus within this place of Israel continues to this day. Miss Harris, presented with these facts, it is undeniable that anyone who claims the existence of a lobby seeking to silence dissent is nothing less than delusional.
A reasonable case can be made that the very opposite is true. Israel has been uniquely singled out, holding Israel to standards not apply to any other country is an unmistakable breach of the International Holocaust Remembrance Alliance working definition of antisemitism. The UK's foremost former special envoy for post-Holocaust issues, Lord pickles has warned. As such, the I. A definition also identifies as potentially antisemitic allegations concerning Jewish control of governments, institutions and public life, as well as accusations of dual loyalty directed towards Jewish citizens.
This grossly disproportionate focus on Israel and the hard line language it has all too often entailed means. I regret to say that this mother of all parliaments has played a dangerous role in the explosion of antisemitism in this country. It is a painful truth that Lord Austin was right to say. So last week, from the other place, as part of my preparation for this debate, I spoke to academics from the Royal United Services Institute who have considered the extent of foreign influence in the United Kingdom the clearest and most substantiated concerns identified by successive governments.
Parliamentary committees and other security services relate to hostile state activities from countries such as Russia and China. That makes it all the more striking that this petition singles out Israel and frames its concern in language that echoes long standing conspiracy theories about hidden influence. There is a clear difference between criticising a government and advancing allegations that supporters of that government exercise covert influence over democratic institutions. The concern with this, petition is not simply what it says. The concern is what it implies when political outcomes are routinely attributed to hidden influence rather than democratic choice.
Trust in democratic institutions is eroded. Conspiracy theories weaken our democracy. They encourage suspicion and promote division. That is true regardless of who the alleged conspirators are. But when those allegations reinforce one of the oldest prejudices in human history, the consequences are particularly serious. We should also remember that conspiracy theories do not exist in a vacuum. History teaches us that conspiracy theories portraying Jews as powerful, manipulative, and disloyal have often preceded discrimination, exclusion and violence. That is not a theoretical concern.
At a time when antisemitism is rising across many parts of society, we must be especially careful not to lend legitimacy to narratives that reinforce such ideas, that context matters. The Jewish community in Britain has experienced a sustained increase in antisemitic incidents in recent years. Many British Jews report feeling less secure than they have for decades. Synagogues, schools and community institutions continue to require significant security measures, happily give way.
I want to begin by making it explicitly clear that I do not support this petition. Indeed, I believe that the proposition before us today raises profound concerns, not because it seeks scrutiny of politics or lobbying, but because of the way in which it frames those concerns and the sinister narratives upon which it draws. This debate raises important questions, not simply about foreign influence or political advocacy, but about the boundaries between legitimate political criticism and conspiracy theories that have historically fuelled antisemitism. Let me also say at the outset that I recognise that many of the people who signed this petition, including the 194 in my constituency, may have done so in good faith.
Many will have believed that they were supporting transparency in public life or expressing concern about the events in the Middle East. I do not question their motives. However, Miss Harris Parliament has a responsibility not only to consider what is being said, but also to understand the historical and political context in which it is being said. We have a duty to recognise when language and ideas echo prejudices that have caused immense harm throughout history. The petition calls for a public inquiry into what it describes as pro-Israeli influence on politics and democracy.
That wording matters. This is not a petition calling for a review of lobbying regulations generally. It is not a petition seeking greater transparency about foreign influence from all states. Indeed, it cynically overlooks the fact that there are campaigns and lobbies operating in the UK in support of almost all countries in the world. It does not ask for a broad examination of how political advocacy works in the United Kingdom. Instead, it singles out one country and, more importantly, invokes a long standing allegation that people who support that country exercise hidden or improper influence over our democratic institutions.
That false accusation has a very long and very troubling history. For centuries, at the heart of antisemitism has been the claim that Jews exercise secret control over governments, political systems, financial institutions, the media or public life. Those ideas have appeared in countless forms throughout history. They have been repackaged and modernised for different generations. But the core allegation remained remarkably consistent that Jews, acting collectively and covertly manipulate political events from behind the scenes. The most notorious example was the fraudulent document known as The Protocols of the Elders of Zion, which purported to reveal a Jewish conspiracy to dominate the world.
Although repeatedly exposed as a forgery, its pernicious influence was immense. It fuelled antisemitic movements across Europe and beyond, and helped to create an environment in which discrimination, persecution and violence flourished. Today, such ideas are often expressed through different language, but the ill intent of its practitioners and its harmful consequences. Harmful consequences on Jews and wider society are all too familiar. Rather than speaking explicitly about Jews, some speak about Zionists. The lobby, hidden influence networks, or pro-Israel control. The packaging has changed, but it is no less insidious in its implication.
Like many of my colleagues, Miss Harris, I have been accosted while walking outside Parliament by so-called peace activists handing out mock banknotes with Bank of Zionism, written on an insinuation of Jewish control of our politics and economy. It is unmistakably racist. But this is exactly the sort of harmful activity and rhetoric which has become commonplace. This sort of message, which today's petition stems from. That is why concerns have been raised by so many across the political spectrum about the framing of this petition.
This is not an attempt to prevent criticism of Israel. It is not an attempt to shield any government from scrutiny. The government of Israel, like every government in the world, can and should be subject to criticism. Its policies can be challenged, its decisions can be debated. Its actions can be scrutinised robustly and vigorously. Indeed, that is entirely consistent with democratic debate. It should be noted that extensive parliamentary time has been spent debating Israel in the year following Hamas's horrific terror rampage of 7th October 2023.
MPs made an astonishing 4369 contributions in the chamber relating to Israel. Now consider for a second that this number was more than double the number of mentions of the National Health Service at 1895. In that same period, Russia's invasion of Ukraine was mentioned, 1449 times. Whilst the appalling suffering unleashed by the war in Sudan only warranted a paltry 225 mentions. The same disproportionate focus within this place of Israel continues to this day. Miss Harris, presented with these facts, it is undeniable that anyone who claims the existence of a lobby seeking to silence dissent is nothing less than delusional.
A reasonable case can be made that the very opposite is true. Israel has been uniquely singled out, holding Israel to standards not apply to any other country is an unmistakable breach of the International Holocaust Remembrance Alliance working definition of antisemitism. The UK's foremost former special envoy for post-Holocaust issues, Lord pickles has warned. As such, the I. A definition also identifies as potentially antisemitic allegations concerning Jewish control of governments, institutions and public life, as well as accusations of dual loyalty directed towards Jewish citizens.
This grossly disproportionate focus on Israel and the hard line language it has all too often entailed means. I regret to say that this mother of all parliaments has played a dangerous role in the explosion of antisemitism in this country. It is a painful truth that Lord Austin was right to say. So last week, from the other place, as part of my preparation for this debate, I spoke to academics from the Royal United Services Institute who have considered the extent of foreign influence in the United Kingdom the clearest and most substantiated concerns identified by successive governments.
Parliamentary committees and other security services relate to hostile state activities from countries such as Russia and China. That makes it all the more striking that this petition singles out Israel and frames its concern in language that echoes long standing conspiracy theories about hidden influence. There is a clear difference between criticising a government and advancing allegations that supporters of that government exercise covert influence over democratic institutions. The concern with this, petition is not simply what it says. The concern is what it implies when political outcomes are routinely attributed to hidden influence rather than democratic choice.
Trust in democratic institutions is eroded. Conspiracy theories weaken our democracy. They encourage suspicion and promote division. That is true regardless of who the alleged conspirators are. But when those allegations reinforce one of the oldest prejudices in human history, the consequences are particularly serious. We should also remember that conspiracy theories do not exist in a vacuum. History teaches us that conspiracy theories portraying Jews as powerful, manipulative, and disloyal have often preceded discrimination, exclusion and violence. That is not a theoretical concern.
At a time when antisemitism is rising across many parts of society, we must be especially careful not to lend legitimacy to narratives that reinforce such ideas, that context matters. The Jewish community in Britain has experienced a sustained increase in antisemitic incidents in recent years. Many British Jews report feeling less secure than they have for decades. Synagogues, schools and community institutions continue to require significant security measures, happily give way.
16:42
Speaker 4
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Speaker 4
I'm grateful to my hon. Friend for giving way, and I must just briefly declare my interest as a co-chair with the member for Bury St Edmunds of the all party parliamentary Group for British Jews. Friend, agree with me that given global events, our Jewish constituents are justified in feeling uneasy. What we must absolutely ensure and I applaud the robust way he is responding to this debate, is that we do not import those conflicts onto the streets of our country.
16:43
16:43
Speaker 2
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Speaker 2
My hon. Friend, makes an excellent point. And against the backdrop of these extra protections, the Jewish community are asking for, it is entirely understandable that a petition built around allegations of hidden pro-Israel influence has generated such deep anxiety. Many British Jews hear in that language the echoes of accusations that have been directed at their community for generations. We should listen carefully to those concerns. That does not mean that public life should be beyond scrutiny. Quite the opposite.
Transparency is essential. Foreign influence should be taken seriously. Lobbying should be transparent. Political donations should be properly regulated. Parliament should remain vigilant against inappropriate influence from any source. But those principles must be applied consistently. If concerns exist about lobbying, they should be addressed through the established mechanisms that already exist. The challenge for us all today is to ensure that this debate does not inadvertently amplify the very narratives that have caused such concern.
We must expose them not to amplify conspiracy theories, but to challenge them. Parliament is at its strongest when it combines robust democratic debate with moral clarity. As legislators, we have a responsibility to understand that hatred evolves and adopts new language whilst advancing old prejudices. We must now respond appropriately. If there is one positive outcome from today's debate, I hope it will be a greater public understanding of how anti-Semitism can manifest in modern political discourse, particularly through conspiracy theories concerning power, influence and loyalty.
We should use this opportunity not to legitimise those narratives, but to expose them. This should not be a partisan issue. Members from every party should be able to agree that legitimate political disagreement must never rely on, excuse, or reinforce antisemitic narratives. We should be collectively clear that allegations of covert Jewish or pro-Israel control of politics are not legitimate political criticism. They are rooted in a tradition of antisemitic conspiracy theory that has caused immense harm throughout history. Parliament should reject those narratives.
The Prime Minister and government have rightly committed itself to a whole of society approach to tackling antisemitism. This debate is therefore about more than a petition. It is an early test for its resolve to confront antisemitism wherever it appears. I hope that the minister will use his contribution to make clear that conspiracy theories concerning Jewish or pro-Israel control of politics have no place in democratic discourse. I hope that members from all parties will stand together in defence of democratic debate, free from prejudice and conspiracy, allegations of hidden pro-Israel or Zionist control of British democracy.
Draw upon a tradition of conspiracy thinking that has poisoned public life for generations. Parliament should reject those ideas and send a clear message that antisemitism. Antisemitic narratives, whether old or newly repackaged, will find no home in this Parliament of the United Kingdom.
Transparency is essential. Foreign influence should be taken seriously. Lobbying should be transparent. Political donations should be properly regulated. Parliament should remain vigilant against inappropriate influence from any source. But those principles must be applied consistently. If concerns exist about lobbying, they should be addressed through the established mechanisms that already exist. The challenge for us all today is to ensure that this debate does not inadvertently amplify the very narratives that have caused such concern.
We must expose them not to amplify conspiracy theories, but to challenge them. Parliament is at its strongest when it combines robust democratic debate with moral clarity. As legislators, we have a responsibility to understand that hatred evolves and adopts new language whilst advancing old prejudices. We must now respond appropriately. If there is one positive outcome from today's debate, I hope it will be a greater public understanding of how anti-Semitism can manifest in modern political discourse, particularly through conspiracy theories concerning power, influence and loyalty.
We should use this opportunity not to legitimise those narratives, but to expose them. This should not be a partisan issue. Members from every party should be able to agree that legitimate political disagreement must never rely on, excuse, or reinforce antisemitic narratives. We should be collectively clear that allegations of covert Jewish or pro-Israel control of politics are not legitimate political criticism. They are rooted in a tradition of antisemitic conspiracy theory that has caused immense harm throughout history. Parliament should reject those narratives.
The Prime Minister and government have rightly committed itself to a whole of society approach to tackling antisemitism. This debate is therefore about more than a petition. It is an early test for its resolve to confront antisemitism wherever it appears. I hope that the minister will use his contribution to make clear that conspiracy theories concerning Jewish or pro-Israel control of politics have no place in democratic discourse. I hope that members from all parties will stand together in defence of democratic debate, free from prejudice and conspiracy, allegations of hidden pro-Israel or Zionist control of British democracy.
Draw upon a tradition of conspiracy thinking that has poisoned public life for generations. Parliament should reject those ideas and send a clear message that antisemitism. Antisemitic narratives, whether old or newly repackaged, will find no home in this Parliament of the United Kingdom.
16:46
Speaker 1
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Speaker 1
Minute. The clock displays a broken. But we are working on it and I will give you a cough notice just before your three minutes is up, but you. All still need to get up now. Um, the question is that this house has considered. E-petition 752646 relating to pro-Israel influence on UK politics and democracy. Alex Davies-jones.
16:47
16:47
Speaker 6
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Speaker 6
James Harris Um, I also refer members of the House to my Declaration of interests. I want to start by being clear about something. Scrutinising foreign influence is not in itself a problem. Any healthy democracy should look hard at lobbying, donations, pressure groups and influence campaigns wherever they come from. That is not and should not be in question. But that's exactly my concern with how this debate is framed. Chair, wherever they come from, if this is about foreign influence in general, then let's have that conversation properly.
If it's about transparency in lobbying, then let's have that conversation too. But if the concerns keep landing on Israel specifically more than on other countries, as has already been mentioned, then I think it is worth pausing. And all of us asking why that might be. There is something that I find deeply uncomfortable about the idea that out of nearly 200 countries, it is this one the world's only Jewish state. That is this one that needs a special parliamentary inquiry into hidden influence.
I just gently note that this kind of framing has a very long history, and it is not always an easy one. Jewish people have, at different points over the centuries, faced accusations of secretly controlling governments, finance or politicians from behind the scenes. I have heard versions of this said to me about me personally too. I am not suggesting that everyone who supports this debate intends that, but I do think it is worth being honest that the framing here can echo something older, more sinister, more troubling, even unintentionally, given that over 100 000 people have also signed this petition.
I would hope that the minister might consider including something educational in his response. Just so people have the full context. I would also push back on the idea that Israel somehow escapes scrutiny in this House. As has already been said by the honourable gentleman, it is one of the most regularly debated countries we discuss whether that be military action settlements, Gaza sanctions, trade arms exports, recognition of Palestine. I have criticised Israeli government policy myself and that is exactly how it should be.
We should feel free to criticise any government's actions, British, American or otherwise. Criticism is healthy and where there's genuine evidence of wrongdoing, of course it should be looked into as it would be for any country. I just ask that we hold the same standard here that we would anywhere else. Rather than treating this as a special case. Most of us are in this job because we believe in something our values, our constituents, our party, or simply honest disagreement with one another.
I know I can't be bought and I never will be. So I ask that we try to avoid both naivety and overreaction here. And finally, let's support transparency consistently applied to every country in the same way. And let's be mindful that in trying to do the right thing, we don't end up unintentionally leaning on older and comfortable wrong narratives.
If it's about transparency in lobbying, then let's have that conversation too. But if the concerns keep landing on Israel specifically more than on other countries, as has already been mentioned, then I think it is worth pausing. And all of us asking why that might be. There is something that I find deeply uncomfortable about the idea that out of nearly 200 countries, it is this one the world's only Jewish state. That is this one that needs a special parliamentary inquiry into hidden influence.
I just gently note that this kind of framing has a very long history, and it is not always an easy one. Jewish people have, at different points over the centuries, faced accusations of secretly controlling governments, finance or politicians from behind the scenes. I have heard versions of this said to me about me personally too. I am not suggesting that everyone who supports this debate intends that, but I do think it is worth being honest that the framing here can echo something older, more sinister, more troubling, even unintentionally, given that over 100 000 people have also signed this petition.
I would hope that the minister might consider including something educational in his response. Just so people have the full context. I would also push back on the idea that Israel somehow escapes scrutiny in this House. As has already been said by the honourable gentleman, it is one of the most regularly debated countries we discuss whether that be military action settlements, Gaza sanctions, trade arms exports, recognition of Palestine. I have criticised Israeli government policy myself and that is exactly how it should be.
We should feel free to criticise any government's actions, British, American or otherwise. Criticism is healthy and where there's genuine evidence of wrongdoing, of course it should be looked into as it would be for any country. I just ask that we hold the same standard here that we would anywhere else. Rather than treating this as a special case. Most of us are in this job because we believe in something our values, our constituents, our party, or simply honest disagreement with one another.
I know I can't be bought and I never will be. So I ask that we try to avoid both naivety and overreaction here. And finally, let's support transparency consistently applied to every country in the same way. And let's be mindful that in trying to do the right thing, we don't end up unintentionally leaning on older and comfortable wrong narratives.
16:50
16:50
Speaker 7
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Speaker 7
Or choke with anything I say here today. But I want to be very clear. As far as this motion is concerned, this is not about lobbying. It's not about the influence of Israel in politics. This is yet another angle of the anti-Semitism which we are experiencing in this country, and especially driven by the left. And as others have pointed out, this is a very dangerous idea that somehow or other Jews control politics in our country, as we've seen in examples of history right from the Black Death onwards, Jews were accused of coordinating a program of poisoning wells that caused the Black Death to the Holocaust, where Hitler accused Jewish influence of leading to Germany's defeat in the First World War.
And therefore there had to be dealt with. And of course, we have already seen the impact of anti-Semitism in this country. We only have to look at what happened in Golders Green, Manchester, other attempted bombings of synagogues and the threat which Jews feel on under in this country to know that this poison of. anti-Semitism has an impact on people's lives. And I've got to say, if there is a secret Jewish lobby seeking to influence government in the United Kingdom has already been pointed out by other speakers, they're not being very successful because Israel has been the most scrutinized.
Country and their government, the most scrutinized government. And even, you know, if we look at debates here almost every week, we have questions, urgent questions, written questions, statements, debates, etc., in the House and in Westminster Hall, even more so than some of our own domestic affairs unemployment, inflation, health service are given. Less scrutiny. So to say that somehow or other the Jewish lobby is influenced the direction of our politics, I think just does not stand scrutiny. And of course. Israel is the one of Israel is one of the democracies in the Middle East.
And we should be debating the positive contribution that Israel makes to our country in terms of helping with security, in terms of research and development and health, etc., that we benefit from that collaboration with that research. And that's what we should be emphasizing today.
And therefore there had to be dealt with. And of course, we have already seen the impact of anti-Semitism in this country. We only have to look at what happened in Golders Green, Manchester, other attempted bombings of synagogues and the threat which Jews feel on under in this country to know that this poison of. anti-Semitism has an impact on people's lives. And I've got to say, if there is a secret Jewish lobby seeking to influence government in the United Kingdom has already been pointed out by other speakers, they're not being very successful because Israel has been the most scrutinized.
Country and their government, the most scrutinized government. And even, you know, if we look at debates here almost every week, we have questions, urgent questions, written questions, statements, debates, etc., in the House and in Westminster Hall, even more so than some of our own domestic affairs unemployment, inflation, health service are given. Less scrutiny. So to say that somehow or other the Jewish lobby is influenced the direction of our politics, I think just does not stand scrutiny. And of course. Israel is the one of Israel is one of the democracies in the Middle East.
And we should be debating the positive contribution that Israel makes to our country in terms of helping with security, in terms of research and development and health, etc., that we benefit from that collaboration with that research. And that's what we should be emphasizing today.
16:52
16:53
Speaker 8
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Speaker 8
thank you very much. For. LAEach. I think as my friend from Pontypridd said, there is absolutely nothing wrong with having deep scrutiny of the influences that may or may not exist on our politics, but it shouldn't just be focused on Israel, China, Iran, Russia, Belarus, all bad faith actors who seek to change the way that we do things in this country. And yet there seems to be very little attention often shone on those. And it does worry me.
And it worries me for two reasons. Um, uh, Mrs. Harris, um, for those that don't know, my wife is Jewish. I'm not declaring it because it's not something I need to declare, but it is relevant for the purpose of this conversation. She is a British Jew. She is a British citizen. She had the audacity in a previous life to stand for election and get elected, and was a much better MP than I ever will be.
And it worries me for two reasons. Um, uh, Mrs. Harris, um, for those that don't know, my wife is Jewish. I'm not declaring it because it's not something I need to declare, but it is relevant for the purpose of this conversation. She is a British Jew. She is a British citizen. She had the audacity in a previous life to stand for election and get elected, and was a much better MP than I ever will be.
16:54
16:54
Speaker 8
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Speaker 8
In order to fund that election, she took a donation from a British citizen who happened to be Jewish. And what happens?Her name appears on the list. A list that is propagated by the Green Party's deputy leader, morphine Ali, to this day, by the way, that says about bought and sold for Israel. She was not alone on that list. There are members of the current cabinet. There are members of the Shadow Cabinet. There are members of the House of Lords, individuals whose only contribution has been to try and make a difference in society.
British citizens being funded by British citizens. The only difference is the British citizens offering those donations were Jewish and that is. Unfortunately, Mrs. Harris, where debates like this lead to in society, when you start to say that somebody must have a pro-Israeli position, you start to ask them, why do I have that?Are you Jewish?What is your opinion on Israel?Before I can even attempt to have a conversation with you about anything else, it drives a debate towards a place where we are skeptic of people who are Jewish, because they may or may not have some tenuous link to a country far away.
And what does that do that stops Jewish people wanting to participate in any form of public life?I know that to be true because I talk to other Jewish people who tell me that. I've seen that from conversations around my dinner table. And I was in a synagogue in Manchester on the day that the Heaton Park Synagogue was attacked in that same city. And what I saw were British citizens who were scared, and they were scared because of the pervasive narrative that has been allowed to put through this country, that somehow, because Israel is a Jewish state, therefore Jewish people are well, are rightful.
Targets for attack and for scrutiny disproportionate to the impact that they have on society and the impact that they have on society. So whilst I welcome any debates, Mrs. Harris, that allow us to genuinely scrutinise the impact that foreign governments have on this country, the fact that we are yet again, spending all of our time talking about just one, the only Jewish state says more about the petitioner than it does about the people here to debate it.
British citizens being funded by British citizens. The only difference is the British citizens offering those donations were Jewish and that is. Unfortunately, Mrs. Harris, where debates like this lead to in society, when you start to say that somebody must have a pro-Israeli position, you start to ask them, why do I have that?Are you Jewish?What is your opinion on Israel?Before I can even attempt to have a conversation with you about anything else, it drives a debate towards a place where we are skeptic of people who are Jewish, because they may or may not have some tenuous link to a country far away.
And what does that do that stops Jewish people wanting to participate in any form of public life?I know that to be true because I talk to other Jewish people who tell me that. I've seen that from conversations around my dinner table. And I was in a synagogue in Manchester on the day that the Heaton Park Synagogue was attacked in that same city. And what I saw were British citizens who were scared, and they were scared because of the pervasive narrative that has been allowed to put through this country, that somehow, because Israel is a Jewish state, therefore Jewish people are well, are rightful.
Targets for attack and for scrutiny disproportionate to the impact that they have on society and the impact that they have on society. So whilst I welcome any debates, Mrs. Harris, that allow us to genuinely scrutinise the impact that foreign governments have on this country, the fact that we are yet again, spending all of our time talking about just one, the only Jewish state says more about the petitioner than it does about the people here to debate it.
16:56
Speaker 9
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Speaker 9
I think it's important. this is not about the Jewish community. It's about the state of Israel. And I think we must be careful in our words and ensure that we don't conflate the two. But it's always said that the strength of a nation's alliance is measured by how much it can endure. And for the two years this government has supported the State of Israel through the unimaginable genocide in Gaza, illegal settlement building in the occupied West Bank, and even with the war in Iran.
It is also said that the power of a lobby group is measured by how far a government can be pushed beyond the limits of policy making, and I think it's fair to say that for millions up and down this country, the government's approach towards Israel has defied the most basic logic, justice and humanity continue to arms sales amid mass extermination. The weaponization of terrorism law to silence dissent, the welcoming of wanted war criminals on the steps of ten Downing Street. With every decision this government has made, it's not only reasonable to ask questions about political influence in Britain, it's necessary.
As I say, it's not about Jewish communities. It's not about Jewish identity, and it's not about denying anyone the right to advocate for Israel, Palestine or any other state. Lobbying, in fact, is part of our democracy. But when such practices become shrouded, shrouded in secrecy while shifting huge sums of money, we must ask, is this government truly committed to cleansing our politics of foreign influence, or is it just concerned with blocking the foreign donations they don't get?This is about more than simply election funds.
It's about access and about influence. Anyone who claims that these donors receive nothing in return is being naive. The transactional nature of donations applies no less to those in the highest echelons of our democracy. Just this year, Labour Friends of Israel, who funded many of these cabinet members, was reported to the Electoral Commission over concerns about opaque funding arrangements. Ministers in this government publicly identify themselves as members of that organisation, yet it is not registered as a members association and therefore avoids the further disclosure requirements that accompany that status.
That cannot be right. More troubling still is the question of direct support from the Israeli state. Electoral records show that the Israeli ministries of foreign affairs has provided financial support to UK parliamentarians, and that must be transparent.
It is also said that the power of a lobby group is measured by how far a government can be pushed beyond the limits of policy making, and I think it's fair to say that for millions up and down this country, the government's approach towards Israel has defied the most basic logic, justice and humanity continue to arms sales amid mass extermination. The weaponization of terrorism law to silence dissent, the welcoming of wanted war criminals on the steps of ten Downing Street. With every decision this government has made, it's not only reasonable to ask questions about political influence in Britain, it's necessary.
As I say, it's not about Jewish communities. It's not about Jewish identity, and it's not about denying anyone the right to advocate for Israel, Palestine or any other state. Lobbying, in fact, is part of our democracy. But when such practices become shrouded, shrouded in secrecy while shifting huge sums of money, we must ask, is this government truly committed to cleansing our politics of foreign influence, or is it just concerned with blocking the foreign donations they don't get?This is about more than simply election funds.
It's about access and about influence. Anyone who claims that these donors receive nothing in return is being naive. The transactional nature of donations applies no less to those in the highest echelons of our democracy. Just this year, Labour Friends of Israel, who funded many of these cabinet members, was reported to the Electoral Commission over concerns about opaque funding arrangements. Ministers in this government publicly identify themselves as members of that organisation, yet it is not registered as a members association and therefore avoids the further disclosure requirements that accompany that status.
That cannot be right. More troubling still is the question of direct support from the Israeli state. Electoral records show that the Israeli ministries of foreign affairs has provided financial support to UK parliamentarians, and that must be transparent.
16:58
16:58
Speaker 10
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Speaker 10
It's a pleasure to serve under your chair, Mrs. Harris, but I take no pleasure whatsoever in speaking of this debate with its manipulative title, which fits the International Holocaust Remembrance Alliance definition of anti-Semitism. As Lord pickles has clearly stated. Now I must register my interest. I am, of course, a Jewish MP. I think perhaps the only Jewish MP here this afternoon, a member of the Labour Friends of Israel, the. A p p chief of British Jews and a representative on the Board of Deputies of British Jews.
So I would say shame on those who have orchestrated this regurgitation of antisemitic trope. It is ancient, just as it is predictable. There were 57 Jews slaughtered in Bury St Edmunds in 1190, then Norwich, Lincoln and York. Our country has a terrible record of anti-Jewish hatred, and all the Jews of England were expelled in 1290. Few people know that. So anti-Semitism is not new in this country. So pro Israel influence on politics and democracy. Just think a little bit about that title.
It's familiar. We've seen it before in the 20s and 30s, German anti-Semites and Nazis argued that the Weimar Republic had become Jewish. In 1941, Nazi propaganda depicted Jews as secretly manipulating London, Washington and Moscow. So the idea that Jews exercise hidden influence over politics, democracy and society is not new. It's an ancient conspiracy theory repeatedly used to isolate Jews, undermine social cohesion and stoke hatred. So let me tell this House what really threatens democracy the funding of political parties by billionaire expats, claims by Elon Musk that civil war in Britain is inevitable.
The vice president of the United States blaming the terrible murder of Henry Novak on mass migration, Russian interference in democracies across Europe, alleged Iranian links to a number of recent attacks on Jewish institutions, synagogues and communities. And yet, here we are forced to debate Israel's role in our politics and democracy. anti-Semitism is an ancient hatred, repeatedly repackaged to distract people from their real grievances. Once again, it rears its head in Britain, reaching appalling levels in our streets, our workplaces and online. And this debate is making those divisions worse.
The terrible conflict in the Middle East is no justification for this. Citizens of conscience march with genuine and heartfelt sense of outrage at the war, and I respect that. But there are those who seek to intimidate. Just try being a law abiding Jew on a British town centre on a Saturday afternoon. Too many Jews, citizens. Public spaces are not safe. So let us come to our senses. We must reject anti-Semitism in all its forms, reject conspiracy theory dressed up as political analysis, and defend a politics based on evidence, decency and truth.
So I would say shame on those who have orchestrated this regurgitation of antisemitic trope. It is ancient, just as it is predictable. There were 57 Jews slaughtered in Bury St Edmunds in 1190, then Norwich, Lincoln and York. Our country has a terrible record of anti-Jewish hatred, and all the Jews of England were expelled in 1290. Few people know that. So anti-Semitism is not new in this country. So pro Israel influence on politics and democracy. Just think a little bit about that title.
It's familiar. We've seen it before in the 20s and 30s, German anti-Semites and Nazis argued that the Weimar Republic had become Jewish. In 1941, Nazi propaganda depicted Jews as secretly manipulating London, Washington and Moscow. So the idea that Jews exercise hidden influence over politics, democracy and society is not new. It's an ancient conspiracy theory repeatedly used to isolate Jews, undermine social cohesion and stoke hatred. So let me tell this House what really threatens democracy the funding of political parties by billionaire expats, claims by Elon Musk that civil war in Britain is inevitable.
The vice president of the United States blaming the terrible murder of Henry Novak on mass migration, Russian interference in democracies across Europe, alleged Iranian links to a number of recent attacks on Jewish institutions, synagogues and communities. And yet, here we are forced to debate Israel's role in our politics and democracy. anti-Semitism is an ancient hatred, repeatedly repackaged to distract people from their real grievances. Once again, it rears its head in Britain, reaching appalling levels in our streets, our workplaces and online. And this debate is making those divisions worse.
The terrible conflict in the Middle East is no justification for this. Citizens of conscience march with genuine and heartfelt sense of outrage at the war, and I respect that. But there are those who seek to intimidate. Just try being a law abiding Jew on a British town centre on a Saturday afternoon. Too many Jews, citizens. Public spaces are not safe. So let us come to our senses. We must reject anti-Semitism in all its forms, reject conspiracy theory dressed up as political analysis, and defend a politics based on evidence, decency and truth.
17:01
17:02
Speaker 11
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Speaker 11
Thank you, Madam Chair. Pleasure to serve under your chair. Motion is anti-Semitic in its very motivation, in its core, and as such, we should utterly reject it. And people have spoken brilliantly and passionately about that. But I think we can actually turn that terrible negative into a positive, because it asks us to talk about the influence of Israel on, for example, democracy. Well, democracies thrive when our citizens are healthy. And so maybe we should celebrate the incredible brilliance and influence that Israeli scientists and entrepreneurs and people specializing in medical research, in AI applications, the work that they do, the innovation that those people create, whether they be in the state of Israel or whether they be living somewhere else, such as in London, has an incredibly positive influence on the success and health.
Madam chair of all of us, and I think actually, because of that success and that brilliance, I think we should be saying we want more of it. I want more innovation. I want more partnerships with brilliant Israeli scientists that can share their knowledge, their understanding. I want more entrepreneurs from Israel listing their companies on joint listings, for example, on the UK Stock Exchange, preferably than somewhere else. I want more AI experts from Israel sharing that best practice, sharing that knowledge for the benefit of all of us.
I'll happily give way to the honourable gentleman.
Madam chair of all of us, and I think actually, because of that success and that brilliance, I think we should be saying we want more of it. I want more innovation. I want more partnerships with brilliant Israeli scientists that can share their knowledge, their understanding. I want more entrepreneurs from Israel listing their companies on joint listings, for example, on the UK Stock Exchange, preferably than somewhere else. I want more AI experts from Israel sharing that best practice, sharing that knowledge for the benefit of all of us.
I'll happily give way to the honourable gentleman.
17:03
17:03
Speaker 11
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Speaker 11
The use of AI across all of our all of our society and all our applications and industries is changing rapidly. But what I would gently suggest to him is actually that the best way to guarantee peace is to prepare for war so that our opponents respect us. And, Madam Chair, just to conclude, I do think that Israel has so much to offer as the only democracy in the Middle East, and that we should work closely. And I think there is a massive difference, as others have said, between criticising politicians who may be elected in a democracy or whatever state, whether it be Israel or whatever, completely legitimate and criticising a state.
What I want to do is to celebrate the influence of incredible entrepreneurs, scientists, technicians, cyber security specialists within Israel from the Jewish community in this great nation of ours. And to have more of it, not less of it. Madam Chair.
What I want to do is to celebrate the influence of incredible entrepreneurs, scientists, technicians, cyber security specialists within Israel from the Jewish community in this great nation of ours. And to have more of it, not less of it. Madam Chair.
17:04
Speaker 13
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Speaker 13
Thank you, madam. Chair. It's a pleasure to serve under your chairmanship. This debate touches on the principle fundamental to our democracy. British democracy is by the British people. For the British people, and accountable to the British people. No foreign government, no matter who they are, should abuse our system for privileges at the cost of British interests. Historically, many foreign actors tried to meddle in our politics for their interests over the past decade, the Israeli government has been guilty of exactly that guilty of meddling in our politics for the interests of what is ultimately a foreign nation.
This is not a debate about international relations, foreign policy or the palestine-israel conflict, nor is it a debate about the right of British citizens to advocate for their views. To make matters more apparent, in 2017, an. Official employed at the London Embassy was recorded by an undercover journalist expressing his desire to take down pro-Palestine British politicians. The Israeli official named Shay Mason, expressed his goal to take down the ex-minister Alan Duncan because of his criticism of Israel's illegal settlement expansion.
This is not a debate about international relations, foreign policy or the palestine-israel conflict, nor is it a debate about the right of British citizens to advocate for their views. To make matters more apparent, in 2017, an. Official employed at the London Embassy was recorded by an undercover journalist expressing his desire to take down pro-Palestine British politicians. The Israeli official named Shay Mason, expressed his goal to take down the ex-minister Alan Duncan because of his criticism of Israel's illegal settlement expansion.
17:06
17:06
17:06
Speaker 14
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Speaker 14
I thank my good friend for giving way. And would my friend agree that this government hasn't gone far enough in terms of challenging the expansion of illegal settlement?And would you agree with me that too many red lines have been crossed, and this government has sat on their hands and done very little to change?
17:06
Speaker 13
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Speaker 13
Thank you for that intervention. Uh, whilst I can agree with with the sentiments that have been put forward, uh, but this debate is about lobby groups, especially, uh, the Israeli government, pro-Israeli lobby groups have paid hundreds of thousands in political donations in the UK. The evidence is countless, which I will refrain from sharing due to time limits. If we believe in democracy, then we must demand a scrutiny. If we value our sovereignty, then we must demand accountability. If we believe in British independence, then we must ensure no foreign state, whether Israel, China, Russia, Iran or India or any other country is permitted undue influence over our institutions.
I urge the government to strengthen lobby lobbying regulations, improve disclosure requirements and review the relationship between foreign governments and parliamentary bodies. British policy must be determined by British interests, British law and British democratic accountability. In January 2025. Lord Austin was reappointed as the UK trade envoy to Israel. Last October, it was revealed that government officials had urged ministers to allow Lord Austin to pursue a visit in May 2025. Yet this came after the Foreign Secretary's announcement in May 25th that the UK would suspend free trade agreement talks with Israel in response to his blockade of Gaza and his attack on hospitals, despite the government saying that the trade envoy would not meet any representative of.
I urge the government to strengthen lobby lobbying regulations, improve disclosure requirements and review the relationship between foreign governments and parliamentary bodies. British policy must be determined by British interests, British law and British democratic accountability. In January 2025. Lord Austin was reappointed as the UK trade envoy to Israel. Last October, it was revealed that government officials had urged ministers to allow Lord Austin to pursue a visit in May 2025. Yet this came after the Foreign Secretary's announcement in May 25th that the UK would suspend free trade agreement talks with Israel in response to his blockade of Gaza and his attack on hospitals, despite the government saying that the trade envoy would not meet any representative of.
17:08
Speaker 12
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Speaker 12
To speak to Mr.. I join my honourable friend from across the chamber um to condemn all forms of anti-Semitism in all forms anywhere. Um my remarks referring to Israel, um referred to Israeli government actions and organisations interactions with parliamentarians in this place. Um in 2024, declassified UK, June 2024 revealed 13 out of the then 25 members of the Labour Cabinet received hundreds of thousands in donations from pro-Israel donors and that some 180 Britons, 650 MPs had accepted such funding during their political careers. That's 1 in 4 elected members.
If I can continue, please. The. The 255 constituents who signed this petition, and the 118,000 that signed from across the country would just like to hold our government and our system to account for these donations. What are they for and what I'll give.
If I can continue, please. The. The 255 constituents who signed this petition, and the 118,000 that signed from across the country would just like to hold our government and our system to account for these donations. What are they for and what I'll give.
17:09
17:10
17:10
Speaker 12
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Speaker 12
I thank my honourable friend for his intervention. Um, donors that turn a blind eye to blatant violations of Israeli law. British law or international law. That's where I would leave that definition. So if Britain claims to defend its democracy from foreign interference, I'll continue because of time won't allow. We rightly sanction Russia for undermining democratic institutions, warn about the threat from China and Iran to our political system. Yet when substantial evidence of foreign influence concerns Israel, our principles of transparency, scrutiny and accountability appear to vanish.
And I were given the lack of time. Just to give one example, Elbit Systems, Israel's largest arms manufacturer, operates 16 sites across the UK and supplies around 85% of Israel's drones and military ground equipment systems that have been widely used during Israel's genocide in Gaza. Declassified UK reported that in December, 24 representatives of Elbit Systems met Home Office officials in a private meeting with details under FOI exemptions. Elbit systems benefits from substantial British contracts. The defence industry cannot be eligible, privileged and secret critical access.
Without accountability. Um. So no democracy should exempt any state from scrutiny. No lobby should be beyond accountability, and no government should let political convenience override the principles of democratic integrity.
And I were given the lack of time. Just to give one example, Elbit Systems, Israel's largest arms manufacturer, operates 16 sites across the UK and supplies around 85% of Israel's drones and military ground equipment systems that have been widely used during Israel's genocide in Gaza. Declassified UK reported that in December, 24 representatives of Elbit Systems met Home Office officials in a private meeting with details under FOI exemptions. Elbit systems benefits from substantial British contracts. The defence industry cannot be eligible, privileged and secret critical access.
Without accountability. Um. So no democracy should exempt any state from scrutiny. No lobby should be beyond accountability, and no government should let political convenience override the principles of democratic integrity.
17:11
17:11
17:11
17:11
Speaker 16
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Speaker 16
Conflating, uh, governments, religion, uh, people's religion to the government's action is totally unacceptable. Criticising the state of Israel and its actions, especially its present government, is not antisemitic as it would be the bombing of Iraq or Afghanistan. Islamophobic. I want to concentrate my speech on particularly Elbit, which supplies around 85% of the Israeli military drones and land based military equipment. As International Court of Justice considers allegations of genocide. And while the ICC has issued arrest warrants against Israeli Prime Minister and former defense minister, Elbit continues to profit from the genocide in Gaza, United Nations investigators have documented the repeated use of armed quadcopter drones against Palestinian civilians.
One of those systems, the drone is manufactured by Albert Elbit, has a significant presence in my city of Leicester through its manufacturing and technology operations, the company generates billions of dollars in annual revenue, annual revenue while supplying military equipment using a conflict that is subject of allegations of genocide before the International Court of Justice. That's why parliamentary scrutiny of its access to ministerial ministers is essential. It is deeply alarming that freedom of information disclosures reveal repeated meetings between Elbit executives and the Home Office. Briefing papers have shown.
Ministers were preparing to reassure the company in response to pilot action protests. They also reveal that Home Office officials had been in contact with the police regarding those protests, while another meeting was scheduled to include a representative from the attorney general's office. It is disturbing that while ministers meet privately with executives from a company whose weapons are alleged to have been used in acts now under scrutiny before international courts, those who want to challenge those activities through protest increasingly face being associated with terrorism, while the suppliers of war and genocide are granted.
Meeting with ministers, those opposing the machinery of war risk being treated as a threat. Most troubling of all, the section of the ministerial briefing entitled Past Lobbying was redacted. If there is nothing to conceal, why are the details of previous lobbying withheld from Parliament and the public?The question for the minister is straightforward why was an arms manufacturer being reassured by government departments while international legal proceedings over genocide in Gaza continue?And what safeguards exist to ensure that commercial relationships with any foreign defence contractors do not influence policing?Prosecutorial independence or British foreign policy.
Transparency is not optional. If ministers are confident these relationships are appropriate, then they should have no objection to placing them fully in the public domain.
One of those systems, the drone is manufactured by Albert Elbit, has a significant presence in my city of Leicester through its manufacturing and technology operations, the company generates billions of dollars in annual revenue, annual revenue while supplying military equipment using a conflict that is subject of allegations of genocide before the International Court of Justice. That's why parliamentary scrutiny of its access to ministerial ministers is essential. It is deeply alarming that freedom of information disclosures reveal repeated meetings between Elbit executives and the Home Office. Briefing papers have shown.
Ministers were preparing to reassure the company in response to pilot action protests. They also reveal that Home Office officials had been in contact with the police regarding those protests, while another meeting was scheduled to include a representative from the attorney general's office. It is disturbing that while ministers meet privately with executives from a company whose weapons are alleged to have been used in acts now under scrutiny before international courts, those who want to challenge those activities through protest increasingly face being associated with terrorism, while the suppliers of war and genocide are granted.
Meeting with ministers, those opposing the machinery of war risk being treated as a threat. Most troubling of all, the section of the ministerial briefing entitled Past Lobbying was redacted. If there is nothing to conceal, why are the details of previous lobbying withheld from Parliament and the public?The question for the minister is straightforward why was an arms manufacturer being reassured by government departments while international legal proceedings over genocide in Gaza continue?And what safeguards exist to ensure that commercial relationships with any foreign defence contractors do not influence policing?Prosecutorial independence or British foreign policy.
Transparency is not optional. If ministers are confident these relationships are appropriate, then they should have no objection to placing them fully in the public domain.
17:14
17:14
Speaker 17
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Speaker 17
Make the point that what I'm about to say is not meant as a partisan attack, because I am just as angry about incidents of anti-Semitism in my own party as I am when I see it in others. And on that note, on this day in particular, I do want to pay tribute to the Prime Minister who rooted out the poisonous anti-Semitism that had taken hold of our. But I have to say, some of the contributions we've heard today, including for the member for Birmingham, Perry Barr, who talked about choosing our words carefully and then going straight into the conflation that we're talking about between the actions the Israeli government and the Jewish people.
I mean, this this attack on FFI, FFI receives no money whatsoever from the Israeli government, no money whatsoever. And the member for Stoke on Trent Central referred to a list which I've also been on that infamous list. And one of those donors I'm very proud is a. Big supporter of refugee rights around the world. He just happens to be Jewish. And you know how many conversations I've had with him about Israel and the actions of Israeli government?Zero.
So the idea that I am somehow or any of us are having our strings pulled by anyone is an absolute disgrace. No, I won't actually, unless it's to apologize for some of the remarks that he's made. And you know. I mean, where do you even begin?I mean, some of the things that we've heard in the chamber in recent years, you know, in relation to the ban on Tel Aviv. Fans, one member referred to this being a stunt by an MP representing the Zionist lobby.
Another MP has referred to Israel's thirst of blood as a clear anti-Semitic trope of innocent civilians. Another has referred to the blood soaked tentacles of the IDF blood soaked tentacles. Another clear anti-Semitic trope. And that's before you get to some of the political parties that are outside this chamber, that aren't represented yet in this House in any decent numbers. And I am referring to the Green Party, and I am specifically referring to the deputy leader of the Green Party, who talked about supporting the right of indigenous people to fight back on the day that the 7th of October attacks happened.
And it doesn't go there. You know, he has never apologized properly for those remarks, if at all. And not only that, it's since been revealed that he is actively supporting members of his own party who have rightly been suspended for anti-Semitism. We have a responsibility as leaders to be careful with our words and not stir up hatred in the communities amongst a very fragile Jewish community that is reeling from ever more anti-Semitic attacks. And in the case of the Golders Green attacks, really serious injuries and deaths to.
I mean, this this attack on FFI, FFI receives no money whatsoever from the Israeli government, no money whatsoever. And the member for Stoke on Trent Central referred to a list which I've also been on that infamous list. And one of those donors I'm very proud is a. Big supporter of refugee rights around the world. He just happens to be Jewish. And you know how many conversations I've had with him about Israel and the actions of Israeli government?Zero.
So the idea that I am somehow or any of us are having our strings pulled by anyone is an absolute disgrace. No, I won't actually, unless it's to apologize for some of the remarks that he's made. And you know. I mean, where do you even begin?I mean, some of the things that we've heard in the chamber in recent years, you know, in relation to the ban on Tel Aviv. Fans, one member referred to this being a stunt by an MP representing the Zionist lobby.
Another MP has referred to Israel's thirst of blood as a clear anti-Semitic trope of innocent civilians. Another has referred to the blood soaked tentacles of the IDF blood soaked tentacles. Another clear anti-Semitic trope. And that's before you get to some of the political parties that are outside this chamber, that aren't represented yet in this House in any decent numbers. And I am referring to the Green Party, and I am specifically referring to the deputy leader of the Green Party, who talked about supporting the right of indigenous people to fight back on the day that the 7th of October attacks happened.
And it doesn't go there. You know, he has never apologized properly for those remarks, if at all. And not only that, it's since been revealed that he is actively supporting members of his own party who have rightly been suspended for anti-Semitism. We have a responsibility as leaders to be careful with our words and not stir up hatred in the communities amongst a very fragile Jewish community that is reeling from ever more anti-Semitic attacks. And in the case of the Golders Green attacks, really serious injuries and deaths to.
17:17
Speaker 18
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Speaker 18
First of all, a real pleasure to serve on your ship. And a big thank you to the honourable member for Berwick and Roxburgh and. Selkirk for setting the scene incredibly well and giving us a chance to participate. I rise today to speak on a matter that touches the very core of our democratic values, our foreign policy, and indeed our historic obligations as a nation. The minister knows this House knows that I've never been one to hide my views on this issue.
I stand here proud to say that I'm a friend of Israel. Whether I'm standing in this chamber walking the streets of Newton in my constituency, or speaking to believers across our great United Kingdom, I declare an interest as a friend of Israel and saying that it doesn't mean, of course, that I blindly support or indeed defend every action of that nation. No nation is infallible. I'm not infallible, Madam Chair. Neither are you. With great respect, none of us in this room are.
Um. But but but I would not have agreed with it. All the things that they've done. We hear a lot of noise in the media. Madam chair, we hear sinister undertones. I talk about Jewish influence and lobbying when it comes to the pro-Israel community in the UK politics, but I can highlight exactly what I believe that that influence actually is. It's the influence of shared democratic values. Israel is a lone beacon of democracy, freedom of speech, and the rule of law, and a deeply unstable region of the world.
When British citizens and British parliamentarians stand up to defend Israel, they're defending the very principle that this parliament right here was built upon. When we look at the Middle East and the idea of democracy is not as clear anywhere as in Israel, where they hold a principle and we put it to use. Madam Chair, the Democratic Unionist Party, of which I'm very proud to be a member, has always stood foursquare with the Jewish community in Northern Ireland. We know only too well what it's like to see a democratic state subjected to the scourge of terrorism.
We know what it's like to see a legitimate government forced to defend its citizens from those who wish to wipe them off the map. That's a Hamas, Hezbollah and the Houthis. We know all too well the experience of living through terrorist war and seeing the acts of thuggery whitewash what's healthy and possible standards. As I said, Israel is not perfect, but at least it is held to account by all of us and by themselves. When my constituents ask me why the UK must maintain robust, ironclad diplomatic and security ties with Israel, I tell them it's because our safety is intertwined.
Our intelligence sharing saves lives right here in the streets of the United Kingdom of Great Britain and Northern Ireland, in Israel and across the world. Let's be completely honest in this chamber. The real threat to our democracy does not come from those advocating for an ally. It comes from the terrifying use of anti-Semitism that we see masking itself as political debate on the university campuses and on our streets daily. It comes from foreign adversaries who want to fracture our lenses and see Western democracies fall.
So I conclude, I urge the minister today to send a clear message from our government the reformation of the United Kingdom of Great Britain and Northern Ireland. Relationship with Israel is not a matter of political expediency or bowing to pressure, but a fundamental commitment to our fellow democracy. As a friend of this nation, the United Kingdom of Great Britain, Northern Ireland has shown that we stand for what is right and the ability for Israel to be in existence is what is right and is proper, and that is ultimately what is at stake.
Her right to exist. And I will continue to stand for that. Whilst not being not being unduly influenced by nothing other than belief. Thank you very much.
I stand here proud to say that I'm a friend of Israel. Whether I'm standing in this chamber walking the streets of Newton in my constituency, or speaking to believers across our great United Kingdom, I declare an interest as a friend of Israel and saying that it doesn't mean, of course, that I blindly support or indeed defend every action of that nation. No nation is infallible. I'm not infallible, Madam Chair. Neither are you. With great respect, none of us in this room are.
Um. But but but I would not have agreed with it. All the things that they've done. We hear a lot of noise in the media. Madam chair, we hear sinister undertones. I talk about Jewish influence and lobbying when it comes to the pro-Israel community in the UK politics, but I can highlight exactly what I believe that that influence actually is. It's the influence of shared democratic values. Israel is a lone beacon of democracy, freedom of speech, and the rule of law, and a deeply unstable region of the world.
When British citizens and British parliamentarians stand up to defend Israel, they're defending the very principle that this parliament right here was built upon. When we look at the Middle East and the idea of democracy is not as clear anywhere as in Israel, where they hold a principle and we put it to use. Madam Chair, the Democratic Unionist Party, of which I'm very proud to be a member, has always stood foursquare with the Jewish community in Northern Ireland. We know only too well what it's like to see a democratic state subjected to the scourge of terrorism.
We know what it's like to see a legitimate government forced to defend its citizens from those who wish to wipe them off the map. That's a Hamas, Hezbollah and the Houthis. We know all too well the experience of living through terrorist war and seeing the acts of thuggery whitewash what's healthy and possible standards. As I said, Israel is not perfect, but at least it is held to account by all of us and by themselves. When my constituents ask me why the UK must maintain robust, ironclad diplomatic and security ties with Israel, I tell them it's because our safety is intertwined.
Our intelligence sharing saves lives right here in the streets of the United Kingdom of Great Britain and Northern Ireland, in Israel and across the world. Let's be completely honest in this chamber. The real threat to our democracy does not come from those advocating for an ally. It comes from the terrifying use of anti-Semitism that we see masking itself as political debate on the university campuses and on our streets daily. It comes from foreign adversaries who want to fracture our lenses and see Western democracies fall.
So I conclude, I urge the minister today to send a clear message from our government the reformation of the United Kingdom of Great Britain and Northern Ireland. Relationship with Israel is not a matter of political expediency or bowing to pressure, but a fundamental commitment to our fellow democracy. As a friend of this nation, the United Kingdom of Great Britain, Northern Ireland has shown that we stand for what is right and the ability for Israel to be in existence is what is right and is proper, and that is ultimately what is at stake.
Her right to exist. And I will continue to stand for that. Whilst not being not being unduly influenced by nothing other than belief. Thank you very much.
17:21
17:21
Speaker 19
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Speaker 19
Miss Harris, it really is a pleasure to serve with you in the chair. It is critical that we do not let fair concerns over weaknesses and loopholes in our political system spill over and give any credence to ancient, dangerous, poisonous, anti-Semitic conspiracy theories. It is, of course, possible to fairly and rightly criticize the actions of the government of Israel. But let us be very clear the dangerous antisemitic trope that British Jewish people are somehow puppets for a foreign state, or that there is a secret conspiracy to exercise undue control over the government, must be actively called out.
And here now, I robustly and unequivocally reject any such antisemitic conspiracy theories. No one should use concerns over foreign interference to stir, hate or smear and stigmatise the Jewish community. Our democracy is under pressure. It's under pressure from a structural failure that has been building for years. We've allowed money, opacity and foreign influence to creep into British politics, and successive governments have been far too slow to act. The most recent conservative government bears a particular responsibility. Here they were relaxed about Russian money flooding into the UK.
They weakened the independence of the Electoral Commission. They presided over a culture of cronyism and sleaze that corroded public trust. That's not ancient history. It's the recent record. And it matters when we ask how we got to a point where too many people feel that British politics is no longer conducted in their interests. More than 118,000 people signed this petition, and that includes 154 people in my Hazel Grove constituency. Democrats have long believed that protecting our democracy must be treated as a national security priority, and the first and best way to safeguard that democracy is by ensuring transparency.
We have long campaigned for political finance reform and for protecting our democracy from any undue or opaque foreign influence. We have called for real change, including a cap on political donations wherever they're from, and a publicly searchable database of all online political advertising, because we don't think tweaking around the edges will do. We also need a strengthened electoral commission with genuine enforcement powers, including higher fines for breaches of political finance law. And while we welcome much of what is in the representation of the people Bill and feel it's a step in the right direction, it is but a step.
We need a leap forwards. It's an opportunity to make genuine, transformational change to the strength and transparency of our democracy. It's an opportunity to close the loopholes that allow foreign billionaires and oligarchs from buying political access in this country. And we Liberal Democrats will push hard for those changes as the bill progresses through Parliament, because our democracy should not be for sale, not to hostile states, not to foreign oligarchs, not to any outside interests. That places its own agenda above the interests of the people.
This House is elected to serve. Our solution must not be to play geopolitical whac a mole. It must be to structurally fortify our democracy. And if I might, Miss Harris, suggest that the issues are more structural in nature. Seven prime ministers in a decade might suggest that it's more than just the wrong people getting the keys to number ten. Our problems might be just a little bit more structural than that. British people deserve fairness, transparency and a democracy they can believe in as politics affects us all, and the government should do all it can to protect our democracy for all of our communities.
And that includes pushing back robustly against anti-Semitism wherever it is, including in this House.
And here now, I robustly and unequivocally reject any such antisemitic conspiracy theories. No one should use concerns over foreign interference to stir, hate or smear and stigmatise the Jewish community. Our democracy is under pressure. It's under pressure from a structural failure that has been building for years. We've allowed money, opacity and foreign influence to creep into British politics, and successive governments have been far too slow to act. The most recent conservative government bears a particular responsibility. Here they were relaxed about Russian money flooding into the UK.
They weakened the independence of the Electoral Commission. They presided over a culture of cronyism and sleaze that corroded public trust. That's not ancient history. It's the recent record. And it matters when we ask how we got to a point where too many people feel that British politics is no longer conducted in their interests. More than 118,000 people signed this petition, and that includes 154 people in my Hazel Grove constituency. Democrats have long believed that protecting our democracy must be treated as a national security priority, and the first and best way to safeguard that democracy is by ensuring transparency.
We have long campaigned for political finance reform and for protecting our democracy from any undue or opaque foreign influence. We have called for real change, including a cap on political donations wherever they're from, and a publicly searchable database of all online political advertising, because we don't think tweaking around the edges will do. We also need a strengthened electoral commission with genuine enforcement powers, including higher fines for breaches of political finance law. And while we welcome much of what is in the representation of the people Bill and feel it's a step in the right direction, it is but a step.
We need a leap forwards. It's an opportunity to make genuine, transformational change to the strength and transparency of our democracy. It's an opportunity to close the loopholes that allow foreign billionaires and oligarchs from buying political access in this country. And we Liberal Democrats will push hard for those changes as the bill progresses through Parliament, because our democracy should not be for sale, not to hostile states, not to foreign oligarchs, not to any outside interests. That places its own agenda above the interests of the people.
This House is elected to serve. Our solution must not be to play geopolitical whac a mole. It must be to structurally fortify our democracy. And if I might, Miss Harris, suggest that the issues are more structural in nature. Seven prime ministers in a decade might suggest that it's more than just the wrong people getting the keys to number ten. Our problems might be just a little bit more structural than that. British people deserve fairness, transparency and a democracy they can believe in as politics affects us all, and the government should do all it can to protect our democracy for all of our communities.
And that includes pushing back robustly against anti-Semitism wherever it is, including in this House.
17:24
17:24
Speaker 16
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Speaker 16
Thank you, Miss Harris. It's a pleasure to serve under your chairmanship today. We're here to debate. E-petition 752646, calling for a public inquiry into what the petitioners termed pro-Israel influence on UK politics, party policies and public debate. And I will thank the petitioners for raising concerns about foreign influence, transparency and public confidence in democratic institutions. But I do share some of the misgivings of my honourable friend about the apparent motivations of some of those who have supported this petition because whilst Parliament must always take seriously any issue that touches on the integrity of UK democracy.
The evidence that has been put forward does not support the allegations. And whilst there is clearly deep public concern about the conflict in Gaza and the West Bank, and the strength of feeling around this issue runs across communities, across all parts of the country, and as the Honourable Lady for Pontypridd made clear, there is absolutely nothing wrong with criticising political decisions of any government, including Israel. And I've certainly done so myself on illegal settlements. It is concerning when Israel is singled out for. Scrutiny in a way that is not done of any other, uh, any other country.
And when donors who happen to be. Well, although the honourable gentleman didn't have the courtesy to give way to me, I will.
The evidence that has been put forward does not support the allegations. And whilst there is clearly deep public concern about the conflict in Gaza and the West Bank, and the strength of feeling around this issue runs across communities, across all parts of the country, and as the Honourable Lady for Pontypridd made clear, there is absolutely nothing wrong with criticising political decisions of any government, including Israel. And I've certainly done so myself on illegal settlements. It is concerning when Israel is singled out for. Scrutiny in a way that is not done of any other, uh, any other country.
And when donors who happen to be. Well, although the honourable gentleman didn't have the courtesy to give way to me, I will.
17:26
17:26
17:26
Speaker 16
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Speaker 16
Well, I think the difference is that we can see every day of every week of every year that there a concerted attacks coming from Russia and from China, not only on our democratic system, on our communities around the country, across online, online media, trying to set one part of our community against another. And frankly, they don't care who wins. But I will say that when he spoke earlier about donors, and I think he was mostly talking at that point about donors to the Labour Party. But I know that such donors, obviously, to all other parties that they were to be defined as pro-Israel because they happen to be Jewish and hand questioned the actions of the Israeli government.
I would say it is hard to find a clearer breach of the international definition of anti-Semitism than holding Jewish people in the UK accountable for the actions of the Israel government, which is what the honourable gentleman appeared to do. Of course I shall.
I would say it is hard to find a clearer breach of the international definition of anti-Semitism than holding Jewish people in the UK accountable for the actions of the Israel government, which is what the honourable gentleman appeared to do. Of course I shall.
17:27
Speaker 20
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Speaker 20
And does my honourable friend agree with me that not only does this anti-Israel hatred create a scourge of anti-Semitism against our Jewish community, they are suffering for doing nothing other than being British Jews who happen to live in this country and are in the middle of this conflict for no other reason than their ethnic and religious background. And as my honourable friend, agree with me that this is simply unfair and it's racist.
17:27
17:28
Speaker 16
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Speaker 16
Uh, I couldn't agree more strongly. And so just let me be entirely unambiguous from the outset, His Majesty's opposition firmly rejects the premise of this petition, and any suggestion that Israel or British organisations expressing solidarity with it represent a malign or covert influence on British politics and democracy. Of course.
17:28
Speaker 18
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Speaker 18
He's doing exceptionally well and I appreciate his comments. Uh, does he agree, as I agree, that government were right to take action against Palestine action. Take that to the Court of Appeal to win that case. And does he agree with me when it comes to Palestine action, they have stepped over the line. They acceptable line when it comes to protesting. And because of that, they should be condemned to be an illegal organization.
17:29
17:29
Speaker 16
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Speaker 16
Honourable gentleman has so often gets the heart of the issue that protest stops being peaceful protest when it involves using weapons to harm and to intimidate those who hold a different, view. Now, to suggest that open, transparent, transparent advocacy by British citizens and established communal organisations constitute an improper or malign conspiracy is not only factually incorrect, but it also treads into deeply troubling territory. And this petition, as I have said, is not supported by credible evidence. Instead, it invites vague suspicion of covert. I have given way a number of times, and I think I need to make a little progress.
Vague suspicion of covert improper activity by unnamed organisations and we must call this out for what it is. The use of terms like the Israel lobby to describe British Jewish communal bodies combines unfounded claims of disproportionate back backroom influence with the ancient, insidious trope that Jewish citizens are inherently disloyal or untrustworthy. I will give way briefly.
Vague suspicion of covert improper activity by unnamed organisations and we must call this out for what it is. The use of terms like the Israel lobby to describe British Jewish communal bodies combines unfounded claims of disproportionate back backroom influence with the ancient, insidious trope that Jewish citizens are inherently disloyal or untrustworthy. I will give way briefly.
17:30
17:30
Speaker 16
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Speaker 16
Of course, one of the reasons why. Of course, those donations have been highlighted and publicised as thoroughly as they have is because they are recorded and they are published. I myself haven't taken any donations that I'm aware of that apply to that. But there is nothing inherently wrong with them. Now, the leader of the opposition has repeatedly warned that we are witnessing a deeply concerning normalisation of rhetoric that would once have been unthinkable towards British Jews. Far too often, individuals use their political views on Israel as a convenient cover to display blatant anti-Semitism, and we cannot allow a moral and political vacuum to be filled by a hatred of Jews, and we must be vigilant that parliamentary procedures, including the E-petition system, are not inadvertently weaponised to legitimise these harmful tropes.
Our political system is built upon open, transparent advocacy. Members of this House regularly engage with a wide variety of groups to understand complex international issues, and we recognise and value the long standing, transparent activities of groups like Conservative Friends of Israel and Labour Friends of Israel, which work openly to foster strong bilateral ties, trade and security cooperation between the United Kingdom and a democratic ally. And at the same time, our parliamentary democracy benefits from a diverse range of perspectives to ensure that members of Parliament receive a comprehensive understanding of the region, organisations like the conservative Middle East Council and other advocacy groups play an invaluable role.
They work diligently to ensure that parliamentarians receive detailed information and insights from a range of viewpoints, including pro-Palestinian and Pro-arab perspectives. And that is how healthy, transparent democracy should operate through open debate, visible briefings and competing arguments presented clearly in the light of day. There is no secrecy here, no hidden hand and certainly no malign infiltration. While this petition asks us to chase shadows and investigate legitimate domestic advocacy, it distracts from the very real, very pressing and deeply dangerous threats of foreign interference that our security services warn us about every single day.
The greatest threat to British politics and democracy does not come from democratic allies or British community groups. It comes from hostile foreign state actors, most notably China and Russia, and that's why they were at the heart of the Rykov review. Our intelligence agencies have been explicit. In October 2025, MI5 issued urgent guidance to parliament warning that Russian hackers had stolen data from members of Parliament. Leaked sensitive UK US trade documents ahead of the 2019 general election, and even impersonated foreign embassies to contact ministers directly.
We have seen the tangible consequences of this subversion in our legal system, such as the sentencing in November 2025 of Nathan Gill, the former leader of reform UK Wales, to more than ten years in prison after he was found guilty of accepting bribes from a pro-Russian Ukrainian politician to peddle Kremlin narratives. But equally alarming is the sustained, calculated campaign of espionage and democratic infiltration orchestrated by Beijing, MI5 security alerts have warned of covert attempts to recruit individuals with access to sensitive information within the Palace of Westminster. We have seen a string of high profile cases, including espionage, espionage involving UK Border Force and Hong Kong trade officials and deeply concerning allegations involving political advisers and researchers.
China is actively seeking to pass information on parliamentarians and undermine our sovereign affairs. They continue to spy on our on our colleagues to target Hong Kong activists, many of whom remain British citizens, who have sought refuge on our shores and actively work to weaken our democratic resilience. Now, the opposition believes we must go much further to protect the integrity of British politics and our wider democratic framework. And that is why, my honourable friend, the Shadow Chancellor of the Duchy of Lancaster, has called for China to be formally placed on the enhanced tier of the Foreign Influence Registration Scheme.
This would require strict monitoring of any political activity taking place in the UK. At the instruction of the Chinese state, the government must publicly accept that China is already acting in a manner opposed and hostile to the core interests of the United Kingdom. In conclusion, Miss Harris, we do not. Give away. Very briefly.
Our political system is built upon open, transparent advocacy. Members of this House regularly engage with a wide variety of groups to understand complex international issues, and we recognise and value the long standing, transparent activities of groups like Conservative Friends of Israel and Labour Friends of Israel, which work openly to foster strong bilateral ties, trade and security cooperation between the United Kingdom and a democratic ally. And at the same time, our parliamentary democracy benefits from a diverse range of perspectives to ensure that members of Parliament receive a comprehensive understanding of the region, organisations like the conservative Middle East Council and other advocacy groups play an invaluable role.
They work diligently to ensure that parliamentarians receive detailed information and insights from a range of viewpoints, including pro-Palestinian and Pro-arab perspectives. And that is how healthy, transparent democracy should operate through open debate, visible briefings and competing arguments presented clearly in the light of day. There is no secrecy here, no hidden hand and certainly no malign infiltration. While this petition asks us to chase shadows and investigate legitimate domestic advocacy, it distracts from the very real, very pressing and deeply dangerous threats of foreign interference that our security services warn us about every single day.
The greatest threat to British politics and democracy does not come from democratic allies or British community groups. It comes from hostile foreign state actors, most notably China and Russia, and that's why they were at the heart of the Rykov review. Our intelligence agencies have been explicit. In October 2025, MI5 issued urgent guidance to parliament warning that Russian hackers had stolen data from members of Parliament. Leaked sensitive UK US trade documents ahead of the 2019 general election, and even impersonated foreign embassies to contact ministers directly.
We have seen the tangible consequences of this subversion in our legal system, such as the sentencing in November 2025 of Nathan Gill, the former leader of reform UK Wales, to more than ten years in prison after he was found guilty of accepting bribes from a pro-Russian Ukrainian politician to peddle Kremlin narratives. But equally alarming is the sustained, calculated campaign of espionage and democratic infiltration orchestrated by Beijing, MI5 security alerts have warned of covert attempts to recruit individuals with access to sensitive information within the Palace of Westminster. We have seen a string of high profile cases, including espionage, espionage involving UK Border Force and Hong Kong trade officials and deeply concerning allegations involving political advisers and researchers.
China is actively seeking to pass information on parliamentarians and undermine our sovereign affairs. They continue to spy on our on our colleagues to target Hong Kong activists, many of whom remain British citizens, who have sought refuge on our shores and actively work to weaken our democratic resilience. Now, the opposition believes we must go much further to protect the integrity of British politics and our wider democratic framework. And that is why, my honourable friend, the Shadow Chancellor of the Duchy of Lancaster, has called for China to be formally placed on the enhanced tier of the Foreign Influence Registration Scheme.
This would require strict monitoring of any political activity taking place in the UK. At the instruction of the Chinese state, the government must publicly accept that China is already acting in a manner opposed and hostile to the core interests of the United Kingdom. In conclusion, Miss Harris, we do not. Give away. Very briefly.
17:35
17:35
Speaker 16
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Speaker 16
Like what we have seen that Iran seeing itself as not only a regional, but increasingly global power, is becoming increasingly willing to, uh, not only take, uh, physical attacks, but also those, um, if you like, subthreshold action against our democracy. But in conclusion, we do not support a public inquiry into the imaginary threat of pro-Israel lobbying. To grant one would be to validate a petition that lacks credible evidence and fuels antisemitic conspiracies. Instead, the Cabinet Office and the government must focus their finite resources on the genuine systemic dangers that face our democracy.
Let us strengthen our defenses against the hostile state apparatus in Beijing and Moscow, protect our parliamentarians from actual espionage, and maintain a political culture where open, transparent debate from all sides of the Middle East debate can thrive without fear of malicious vilification.
Let us strengthen our defenses against the hostile state apparatus in Beijing and Moscow, protect our parliamentarians from actual espionage, and maintain a political culture where open, transparent debate from all sides of the Middle East debate can thrive without fear of malicious vilification.
17:36
17:36
Speaker 4
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Speaker 4
Your right hon. Member referred to my remarks in answering a question. Maybe I wasn't very clear, but he mischaracterized my remarks as referring to all Jews or Jewish donors. My remarks clearly referred to pro-Israeli donors, whoever they are, and just to clarify, it's those that support the illegal actions of Israel or.
17:37
17:37
17:37
Speaker 17
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Speaker 17
Thank you, Miss Harrison. It's a pleasure to serve under your chair. And I bring honorable friends to the attention of my register of interest. I'd like to thank the honourable member for Berwickshire, Roxburgh and Selkirk for moving this motion. He does so on behalf of the signatories of the petition, asking for a public inquiry into pro-Israel influence on politics and democracy. Can I also thank honourable members who have participated today from across the House, and I join my friend, honourable friend from Hemel Hempstead in paying tribute to the Prime Minister, who has shown his finest form in the six years leading our party in rooting out the anti-Semitism with how he has handled himself and took the fight to the party issues.
Regarding the specific request of the petition, the government does not support a public inquiry solely on pro-Israeli influence. In fact, Miss Harris, I would like to turn to and address what I believe is the underlying premise of the petition and this debate. But before I do, I should say that there is another kind of debate we could have had today a debate about legitimate concerns of foreign influence and interference in our politics and democracy. More wide ranging than from any one country. And what the government is doing about it.
Instead, the premise of this debate is narrowly and deliberately targeted on Israel. The premise of this debate, to speak to my honourable member friend from Pontypridd on the need for education in this debate. The premise of this debate is that Israel, the world's only Jewish state, is an influence on British politics, which stands alone to be held to a different standard than any democratic nation chair. This is unfortunate. It's unfortunate that the petition behind this debate plays into the same old anti-Semitic tropes of hidden forces and malign control.
I would like to remind honourable members that the International Holocaust Remembrance Alliance, the. I. Definition of anti-Semitism, lists the double standards applied to Israel as one of the hallmarks of contemporary anti-Semitism in public life. The definition also refers to the mendacious allegations of Jews having power as a collective. Controlling the government and other institutions. This E-petition invokes those very same stereotypes, where it talks of pro-Israel organisations shaping government decisions with this in mind, with this. With this in mind, I want to be clear that we reject the premise from which this debate originates.
The framing used risks reinforcing the narratives historically associated with anti-Semitism. The UK and Israel have a deep and enduring relationship. 76 years ago, we were rightly proud to recognise the State of Israel and our commitments to the security of it. Its people remains unwavering. My, my. I'll make some progress. My political party has long been an advocate for the Jewish state. Over 100 years ago, Labour's 1917 war aims declaration committed us to support for a Jewish homeland in the 1960s and 70s when Israel found itself yet again under attack from its neighbours, it found one of its most passionate advocates in the Labour prime minister, Harold Wilson.
Criticism of governments is democratic and proper within Israel itself, citizens regularly protest and challenge the actions of their elected government. As a government, we also challenge the Israeli government and have and continue where we disagree, such as recognising the state of Palestine and the expansion of illegal settlements and sanctions on their leaders. And there are those in the UK who wish to criticise the influence of a particular Israeli administration or its policies. But we should also acknowledge that there are individuals and organisations who support the government of Israel, and they engage in our democratic process and advocate for causes they believe in, just as countless other groups do.
There are normal features of a democracy, of a democratic society. They are not evidence of malign control or undue influence. Furthermore, in comments regarding donors, donors who support Israel singled out like no other expected to defend what their position is on Israel. Donis Dewar Donis. Sorry, Jewish donors equal support for Israel, equal malign influence is the implicit and too often explicit rhetoric we see and hear the premise of this debate gravitates towards a familiar inconsistency that even influence, rooted simply in supporting Israel or its legitimacy and its right to exist, is somehow an improper or hidden force in British politics.
This is where I give way.
Regarding the specific request of the petition, the government does not support a public inquiry solely on pro-Israeli influence. In fact, Miss Harris, I would like to turn to and address what I believe is the underlying premise of the petition and this debate. But before I do, I should say that there is another kind of debate we could have had today a debate about legitimate concerns of foreign influence and interference in our politics and democracy. More wide ranging than from any one country. And what the government is doing about it.
Instead, the premise of this debate is narrowly and deliberately targeted on Israel. The premise of this debate, to speak to my honourable member friend from Pontypridd on the need for education in this debate. The premise of this debate is that Israel, the world's only Jewish state, is an influence on British politics, which stands alone to be held to a different standard than any democratic nation chair. This is unfortunate. It's unfortunate that the petition behind this debate plays into the same old anti-Semitic tropes of hidden forces and malign control.
I would like to remind honourable members that the International Holocaust Remembrance Alliance, the. I. Definition of anti-Semitism, lists the double standards applied to Israel as one of the hallmarks of contemporary anti-Semitism in public life. The definition also refers to the mendacious allegations of Jews having power as a collective. Controlling the government and other institutions. This E-petition invokes those very same stereotypes, where it talks of pro-Israel organisations shaping government decisions with this in mind, with this. With this in mind, I want to be clear that we reject the premise from which this debate originates.
The framing used risks reinforcing the narratives historically associated with anti-Semitism. The UK and Israel have a deep and enduring relationship. 76 years ago, we were rightly proud to recognise the State of Israel and our commitments to the security of it. Its people remains unwavering. My, my. I'll make some progress. My political party has long been an advocate for the Jewish state. Over 100 years ago, Labour's 1917 war aims declaration committed us to support for a Jewish homeland in the 1960s and 70s when Israel found itself yet again under attack from its neighbours, it found one of its most passionate advocates in the Labour prime minister, Harold Wilson.
Criticism of governments is democratic and proper within Israel itself, citizens regularly protest and challenge the actions of their elected government. As a government, we also challenge the Israeli government and have and continue where we disagree, such as recognising the state of Palestine and the expansion of illegal settlements and sanctions on their leaders. And there are those in the UK who wish to criticise the influence of a particular Israeli administration or its policies. But we should also acknowledge that there are individuals and organisations who support the government of Israel, and they engage in our democratic process and advocate for causes they believe in, just as countless other groups do.
There are normal features of a democracy, of a democratic society. They are not evidence of malign control or undue influence. Furthermore, in comments regarding donors, donors who support Israel singled out like no other expected to defend what their position is on Israel. Donis Dewar Donis. Sorry, Jewish donors equal support for Israel, equal malign influence is the implicit and too often explicit rhetoric we see and hear the premise of this debate gravitates towards a familiar inconsistency that even influence, rooted simply in supporting Israel or its legitimacy and its right to exist, is somehow an improper or hidden force in British politics.
This is where I give way.
17:43
Speaker 15
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Speaker 15
I thank the Minister for giving way, he said that the premise of the petitioners and this petition falls foul of the I. A guidance. The Minister will know that this petition and the wording of it would have gone through the Petitions Committee. Does he agree that it doesn't fall foul, otherwise we wouldn't be debating it here.
17:43
17:43
Speaker 17
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Speaker 17
I agree that there is cause for concern that the premise being made in this petition is antisemitic, and I've explained my reasons why, in my experience, and I referred to it in the comments as to the leadership of the Prime Minister's rooting out anti-Semitism in the Labour Party. For too long, the Labour Party was giving too much benefit of the doubt to what was explicit. anti-Semitic tropes and anti-Semitism, and I would just encourage all of us in this debate to not trip over tropes knowingly or unknowingly when considering that holding British Jews collectively responsible for the state of Israel's behaviour, the government of the.
Of Israel's behaviour is itself antisemitic. I'm going to make some progress. Um. This is where the debate veers into the unhealthy territory of antisemitic tropes and conspiracy theories. The double standard towards the Jewish state, the only Jewish state questioning the legitimacy of a democratic state, existence that is not applied to other countries, including those with authoritarian regimes. The government is clear that antisemitism is unacceptable in all its forms, and British Jews must never be held responsible for the actions of the Israeli government.
Why?
Of Israel's behaviour is itself antisemitic. I'm going to make some progress. Um. This is where the debate veers into the unhealthy territory of antisemitic tropes and conspiracy theories. The double standard towards the Jewish state, the only Jewish state questioning the legitimacy of a democratic state, existence that is not applied to other countries, including those with authoritarian regimes. The government is clear that antisemitism is unacceptable in all its forms, and British Jews must never be held responsible for the actions of the Israeli government.
Why?
17:44
Speaker 18
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Speaker 18
Is very honest, truthful and forthright stand that he's taken and he deserves to have credit for that. But he's right to underline the issue. Can I say this?The Prime Minister, Keir Starmer, uh, deserves some credit, I believe for all he has done to change the attitude of the Labour Party over the last period of time. And while he's about to depart, I think the one thing we should put on record are thanks to him for what he did in this government, to change the attitude and make sure that anti-Semitism was frowned upon and action was taken, and the Prime Minister did that.
17:45
17:45
Speaker 17
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Speaker 17
I thank the honourable member for his comments, and the record will show the support he has recorded, and I concur with with that assessment, we have all. Seen the harm caused by the abhorrent rise in anti-Semitism as raised by my honourable friend the member for Stoke on Trent Central, Stoke central. ISM in the UK is on the rise and it has no place in our society. The increase in attacks since the appalling terror attacks of October 7th with Heaton Park in my. In the borough of bury.
My constituents very near my constituency. Just one example of the shocking attacks and fear and prejudice angled and angered towards the Jewish community and. This cannot be divorced from the debate and the debate of this nature. We should condemn the readiness, the ease, the tendency to hold. 300 000 British Jews collectively accountable for the actions of the Israeli government. A standard never applied to other communities in relation to foreign governments. Well.
My constituents very near my constituency. Just one example of the shocking attacks and fear and prejudice angled and angered towards the Jewish community and. This cannot be divorced from the debate and the debate of this nature. We should condemn the readiness, the ease, the tendency to hold. 300 000 British Jews collectively accountable for the actions of the Israeli government. A standard never applied to other communities in relation to foreign governments. Well.
17:46
17:47
17:47
Speaker 17
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Speaker 17
I do not agree with that. On 30th April, the government announced £25 million of additional funding in 2627 to strengthen policing, protect Jewish communities and provide reassurance in response to the terrorist attacks in Golders Green and the recent spate of anti-Semitic attacks. So, chair, instead of accepting the premise of this debate without question, I urge members across this House to reject the premise, to remember this context, and to question the notion of focusing any debate on Israel alone. Had this debate addressed, the issue of foreign influence or interference as a whole, we could have focused on the range of actions the government is taking to address improper influence outside of the rules.
The Prime Minister has asked the Ethics and Integrity Commission to carry out a review into lobbying, disclosure and access to government. The government is working with Parliament to consider its own rules on lobbying. We are tackling foreign financial influence by improving transparency, closing loopholes and reinforcing legislation.
The Prime Minister has asked the Ethics and Integrity Commission to carry out a review into lobbying, disclosure and access to government. The government is working with Parliament to consider its own rules on lobbying. We are tackling foreign financial influence by improving transparency, closing loopholes and reinforcing legislation.
17:48
17:49
17:49
Speaker 17
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Speaker 17
I would just say to the honourable gentleman gently. And I refer him to an earlier answer about unintentional or quite explicitly and quite deliberate in some cases or wilful misappropriation. You can be a Labour friend of Israel without being a Labour friend of the Israeli government's actions on that particular day. And it is, in fact, the duty of allies and friends to point out where we disagree. And I am sure if there was a debate, I am sure if there was a debate where the discussion was as to the certain behaviours of the Israeli government, we would find a mix of views in this House, including strong common theme.
But that is not this. So I just urge him to pull back from willful or unintentional tropes. The question.
But that is not this. So I just urge him to pull back from willful or unintentional tropes. The question.
17:49
17:50
Speaker 17
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Speaker 17
Harris, the Prime Minister has asked the Ethics and Integrity Commission to carry out a review into lobbying. We have commissioned and are now responding to the Ryecroft review of political finance rules, with immediate steps taken to cap total political donations from British citizens abroad and put a moratorium on cryptocurrency donations. These measures are a first step, and the government will have more to say on this, Miss Harris. The government will always take legitimate concerns of foreign influence and interference in our politics and democracy very seriously.
But I do not believe the premise of this debate wishes to focus on these concerns. Criticism of governments and policies is democratic, but the use of double standards in relation to Israel, conspiracy theories and tropes about the influence of Jews and the Jewish state takes us into ugly, insightful, deeply unhealthy territory, and I urge members to join me in rejecting this framing and rejecting the petition.
But I do not believe the premise of this debate wishes to focus on these concerns. Criticism of governments and policies is democratic, but the use of double standards in relation to Israel, conspiracy theories and tropes about the influence of Jews and the Jewish state takes us into ugly, insightful, deeply unhealthy territory, and I urge members to join me in rejecting this framing and rejecting the petition.
17:50
17:50
Speaker 9
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Speaker 9
Mr.. Can I thank all honourable and honourable members for their. Contributions today?As I said at the start of the debate, my job was to move the petition, move the debate on behalf of the Petitions Committee. But it's not a petition that I have any sympathy with. It's something I fundamentally disagree with. I have to say, when I was allocated this, this debate, I did worry I might have been the only voice calling this out for what it is, but I'm reassured that cross-party.
Across the House, with a few notable exceptions, I have to say there has been a unity in voice, and I think Parliament has demonstrated that we have seen through this petition for what it is, and we are not comfortable with it. We don't like it. And I have to say it's astonishing that some of the views that have been expressed, as I say, by a minority of of honourable members, did, frankly amount to expressing anti-Semitic views, which which I found deeply, deeply uncomfortable. And this is what we as legislators need to call out, is the only way we're going to stamp out anti-Semitism.
I can actually see the minister, the shadow minister, the Lib Dem spokesperson, for their strong words on this.
Across the House, with a few notable exceptions, I have to say there has been a unity in voice, and I think Parliament has demonstrated that we have seen through this petition for what it is, and we are not comfortable with it. We don't like it. And I have to say it's astonishing that some of the views that have been expressed, as I say, by a minority of of honourable members, did, frankly amount to expressing anti-Semitic views, which which I found deeply, deeply uncomfortable. And this is what we as legislators need to call out, is the only way we're going to stamp out anti-Semitism.
I can actually see the minister, the shadow minister, the Lib Dem spokesperson, for their strong words on this.
17:52
17:52
17:52
Speaker 9
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Speaker 9
I'm grateful for that point. First of all, any further petition would have to attract over 100,000 signatures, but the committee does have discretion. Even when it reaches 100,000. Whether to grant another. Debate. I think reflecting on how this debate has gone and reflecting more widely on how this has has how the Jewish community in particular has reacted to this. I certainly would be arguing for this not to come back for debate again, if indeed it reached that threshold.
We have had the opportunity to air the views. I think we have collectively, as I say, called it out for what it is. But I am grateful, Miss Harris, for you chairing the debate and all members who have taken part. Thank you.
We have had the opportunity to air the views. I think we have collectively, as I say, called it out for what it is. But I am grateful, Miss Harris, for you chairing the debate and all members who have taken part. Thank you.
17:53
18:00
18:00
18:00
18:00
18:00
Speaker 11
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Speaker 11
E-petition seven 5598 e relating to spinal muscular atrophy and the newborn screening test. It's a pleasure to serve with you in the chair this afternoon, Mr. Mundell, and it's a privilege to open this debate as a member of the Petitions Committee. I want to begin with two little girls. In May last year, twin daughters were born prematurely to the petitioner, Jessie Nelson, a constituent of the honourable member for Broxbourne. Several months later, they were diagnosed with spinal muscular atrophy type one, the most severe form, their mother was told they would, in her words, probably never walk.
In January of this year, she chose to share that diagnosis publicly, saying that it would be selfish to keep this to myself and not potentially save a child's life. Is the result and I pay tribute to the way she has courageously told her story, using her own unique reach. As a result, this petition was signed by 149,692 people, including 225 of my constituents in Sunderland Central. I was grateful to meet Jessie earlier in Westminster Hall and I thank her and every family who has turned the hardest imaginable experience into a campaign for other people's children.
Caring, I also met Giles Lomax of SMA, UK, the Muscle dystrophy, Muscular Dystrophy UK, and Professor Francesco Muntoni of the Neuromuscular Centre at Great Ormond Street. I thank all of them for their time, as well as the Petitions Committee staff for my help. The help preparing SMA. Is a rare genetic condition that attacks the motor neurons, causing progressive muscle weakness. Around 1500 people in the UK live with it, and about 48 babies are born with it. Each year, roughly one a week in type one SMA symptoms appear within the first six months, and the effects are profound.
Children who cannot hold up their heads or sit unsupported, who may be tube fed and need help to breathe. Until recently, up to 90% of untreated babies either died before the age of two or required permanent ventilation I use. The past tense there deliberately and happily, because the important factor in this debate is that SMA is no longer untreatable. There are now three disease modifying therapies in this country, including a one time gene therapy that did not exist a decade ago. They are approved by Nice and funded by the NHS, a condition that was too often a death sentence for babies is now one that we can treat.
Of course.
In January of this year, she chose to share that diagnosis publicly, saying that it would be selfish to keep this to myself and not potentially save a child's life. Is the result and I pay tribute to the way she has courageously told her story, using her own unique reach. As a result, this petition was signed by 149,692 people, including 225 of my constituents in Sunderland Central. I was grateful to meet Jessie earlier in Westminster Hall and I thank her and every family who has turned the hardest imaginable experience into a campaign for other people's children.
Caring, I also met Giles Lomax of SMA, UK, the Muscle dystrophy, Muscular Dystrophy UK, and Professor Francesco Muntoni of the Neuromuscular Centre at Great Ormond Street. I thank all of them for their time, as well as the Petitions Committee staff for my help. The help preparing SMA. Is a rare genetic condition that attacks the motor neurons, causing progressive muscle weakness. Around 1500 people in the UK live with it, and about 48 babies are born with it. Each year, roughly one a week in type one SMA symptoms appear within the first six months, and the effects are profound.
Children who cannot hold up their heads or sit unsupported, who may be tube fed and need help to breathe. Until recently, up to 90% of untreated babies either died before the age of two or required permanent ventilation I use. The past tense there deliberately and happily, because the important factor in this debate is that SMA is no longer untreatable. There are now three disease modifying therapies in this country, including a one time gene therapy that did not exist a decade ago. They are approved by Nice and funded by the NHS, a condition that was too often a death sentence for babies is now one that we can treat.
Of course.
18:03
Speaker 18
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Speaker 18
As he. Often does bring petitions which generate a lot of interest, I understand that the. One of the life altering gene therapies sold Kazama. I think it is over pronounced that correctly is available not only NHS, but they only work if they're administered before irreversible nerve damage and muscle wasting occur. My colleague for Rubber Band has been to the forefront. And so what does the honourable gentleman agree that perhaps what we really need is a UK wide purchasing power for these heel prick testing kits to.
To be fully extended to all local health trusts without delay, that would make sure that those who have it are caught in time.
To be fully extended to all local health trusts without delay, that would make sure that those who have it are caught in time.
18:03
18:04
18:04
Speaker 23
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Speaker 23
To serving to you, Mr. Mundell, who's talking about the life saving treatments. One of my constituents has a niece who was born with SMA type one and previously would have been at risk of dying. She was told that they were unlikely to live past two, but because of the advances in treatment that he's just spoken about, she's just celebrated her ninth birthday. However, she did have to be fed through a stomach pump. Does he not agree that for £3.1 million we can get full coverage across England, Wales and Northern Ireland and ensure that all babies are tested so that they can be treated as early as possible.
Yeah.
Yeah.
18:04
Speaker 11
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Speaker 11
I thank my hon. Friend for his intervention, and I do agree. I think the issue here, though, is not mainly financial, which I will come on to in just one minute. So as I was saying, um, Mr. Mundell, today, a baby with um sorry, I will say that the key point, as other members have said, is that treatments are dramatically more effective the earlier they are given, before symptoms appear, before irreversible damage is done. Once motor neurons are lost, they do not come back.
Yes I will.
Yes I will.
18:05
Speaker 24
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Speaker 24
Giving way. Congratulations on the speech. But I also join him in tribute to Nelson and her campaigning, but also the parents of Little Charlie in my constituency who, in the words of his own mother, might not have been, was very lucky to celebrate his first birthday last August. His. He was treated with gene therapy after being diagnosed following symptoms and is now living life but in a wheelchair. If he'd been able to be screened at birth, he might have had that treatment sooner.
He might be walking right now.
He might be walking right now.
18:06
18:06
18:06
Speaker 11
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Speaker 11
The honourable lady is entirely right, and I've heard a number of those sort of heart wrenching stories as well, speak on behalf movingly on behalf of her constituent. Um, and that is a testament to the key intervention, which is earliest possible diagnosis soon after birth as possible. But today, a baby with type one SMA is typically not diagnosed until around six months of age. And by then, for many, the window where treatment would have had the most impact. Mr. Mundell has closed, but there is an alternative screening at birth through the existing NHS heel Prick test that is routinely done on day five of a baby's life, and that already screens for ten different serious conditions.
Yes, I will.
Yes, I will.
18:06
Speaker 25
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Speaker 25
And on that note, firstly, thank you, David Mundell for your chairmanship. I also would like to pay tribute to Jessie Nelson and the parents and all of the young people who have been campaigning for this and their determination. I was really alarmed when I discovered from parents in Portsmouth this weekend that Portsmouth will not be included in the rollout of the SMA screening this October, and as a result, that means babies born in my city will miss that early diagnosis and have potentially devastating consequences and conditions that that early treatment might well have saved them with.
So I, with my honourable member from Portsmouth South, have written to our ICB Integrated Care Board to find out why not and whether they will change their mind and have that instead.
So I, with my honourable member from Portsmouth South, have written to our ICB Integrated Care Board to find out why not and whether they will change their mind and have that instead.
18:07
18:07
Speaker 11
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Speaker 11
I thank my hon. Friend for her intervention, and she's absolutely right. I will come on to talk about we have a potential postcode lottery here. I have to say, I don't believe it is an issue for decisions by individual icbs, but a national decision, including about the National Screening Committee, which I will come on to mention. Um, so, Mr. Mundell, the screening that I've described is already in place in dozens of countries, 75% across of of children across Europe are screened at birth.
Every newborn in the United States and Canada has been screened since 2024. Ukraine managed to begin newborn screening for SMA in the midst of a full scale Russian invasion. Given that is the case, the petitioners ask simply why is this screening not in place universally here?
Every newborn in the United States and Canada has been screened since 2024. Ukraine managed to begin newborn screening for SMA in the midst of a full scale Russian invasion. Given that is the case, the petitioners ask simply why is this screening not in place universally here?
18:08
18:08
18:08
Speaker 18
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Speaker 18
Scotland. Introduced the. The routine screening in October. Babies born in England will benefit from the in-service evaluation pilot. Yet families in Northern Ireland don't qualify whatsoever. So does the member agree that government must commit to working across jurisdictions with the Northern Ireland Department of Health to ensure that the evaluation framework is immediately extended to Northern Ireland, so the child's chance at working, at breathing, at surviving is not dictated by the part of the United Kingdom that they're from.
18:09
Speaker 11
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Speaker 11
I thank the honourable member for for for one of his excellent interventions. And he's absolutely right. Clearly, health is a devolved matter in Wales and Northern Ireland. The screening is also not available in Wales. But he's absolutely right. I think it would be difficult to explain to parents of children anywhere in the UK when that this screening is increasingly standard practice internationally. It is not available in every nation of the United Kingdom. Now there are clear.
The petitioners are clear that all conditions that are met that that that that are necessary to begin screening the test exists. The treatments exist, and the evidence tells us that screening would save both lives and money. In the UK, screening is overseen by the independent UK National Screening Committee, who give recommendations to ministers. I should say I was unable to meet with them in preparation for this debate, but I am sure the Minister has been had the benefit of their advice. I recognise, as I think we all must, that the committee's independence matters.
However, oversight of their decision making and the way in which they balance risk, evidence and benefit must be subject to ministerial oversight and in this case in particular, there are questions about how those three elements have been balanced. Specifically, how far the committee seem to be requiring NHS specific evidence when there is significant international evidence already that exists, when it. Reviewed SM for potential inclusion in screening programme in 2018, the National Screening Committee did not recommend screening. But campaigners like SM UK did not walk away.
They kept on doing the work. New cost effectiveness modelling um, commissioned by the screening Committee, published last year, now finds that screening for SM A is likely to be life saving and cost effective. I will.
The petitioners are clear that all conditions that are met that that that that are necessary to begin screening the test exists. The treatments exist, and the evidence tells us that screening would save both lives and money. In the UK, screening is overseen by the independent UK National Screening Committee, who give recommendations to ministers. I should say I was unable to meet with them in preparation for this debate, but I am sure the Minister has been had the benefit of their advice. I recognise, as I think we all must, that the committee's independence matters.
However, oversight of their decision making and the way in which they balance risk, evidence and benefit must be subject to ministerial oversight and in this case in particular, there are questions about how those three elements have been balanced. Specifically, how far the committee seem to be requiring NHS specific evidence when there is significant international evidence already that exists, when it. Reviewed SM for potential inclusion in screening programme in 2018, the National Screening Committee did not recommend screening. But campaigners like SM UK did not walk away.
They kept on doing the work. New cost effectiveness modelling um, commissioned by the screening Committee, published last year, now finds that screening for SM A is likely to be life saving and cost effective. I will.
18:11
18:11
Speaker 27
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Speaker 27
For bringing this debate to to the Hall and your chairmanship as welcome as well, Mr. Mundell. He referred earlier on to 90% of children who are untreated. Potentially dying before their second birthday. And that's a sobering statistic, but it isn't a statistic, is it, Mr. Chair?What it is, it's the reality of children and families and parents live lives. And does he agree with me that we need to go faster, sooner in rolling out a comprehensive programme like, as he mentioned, so many other countries have managed to do.
18:11
Speaker 11
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Speaker 11
I thank my honourable friend for his excellent intervention. And he's absolutely right. This is a matter of pace and and when, not if and how. Both of those questions have already been answered. So I turn now, Mr. Mundell, to the government's response. Um, the previous Secretary of State for health, the right hon. Member for Ilford North met Jessie Nelson, the petitioner, in January, and the government accepted the case for an in-service evaluation. A live NHS trial bringing the date of that forward from January 2027 to October this year, when screening will begin to be rolled out.
I, the petitioners and others welcome that. Though you know we are. There's a sadness that it's taken that long to get to this point. But we must also be honest about where that decision leaves us, because the real argument now, as the honourable gentleman alludes to, is about pace and fairness. The evaluation is funded.
I, the petitioners and others welcome that. Though you know we are. There's a sadness that it's taken that long to get to this point. But we must also be honest about where that decision leaves us, because the real argument now, as the honourable gentleman alludes to, is about pace and fairness. The evaluation is funded.
18:12
Speaker 3
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Speaker 3
Screening laboratories, covering around 72% of births. The remaining six sites, including those that are covering my hon. Friends. Constituents in Portsmouth. Um, which which account for the remaining 28% of babies born in the UK every year, are not at present within the. And this doesn't seem to be an accident. This seems to be the design put in human terms. Of the 48 babies born with SMA in England each year, around 35 would be diagnosed by the introduction of SMA screening.
In this evaluation. But 13 would not. 13 babies a year with the same condition. Born on the wrong side of an arbitrary line. They did not choose who will go undiagnosed until damage is done a baby. Born in one postcode will be screened, treated early and may walk. But a baby born in another in the same week will not. And by the time anyone knows, it may be too late. That is the postcode lottery in its darkest form.
The postcode lottery that Jesse told me about before that deeply concerns her. It's not about a difference in waiting times, but whether a child walks, breathes unaided or feeds normally for life. And this is where Professor Tony's assessment needs to be heard. And he asked me specifically to put this on the record. He described a trial that deliberately leaves some babies unscreened to serve as a comparison group, as his word, unethical. We are withholding from some children a diagnosis.
We are fully capable of making and that we know will help shape their lives. To gather data on something he considers already internationally proven. That is the view not just of one eminent clinician, I am told, but of the wider SMA clinical community to. I'm going to make a little bit of progress and finish the point. I can see the time getting away and I want to make sure people can speak. The question is, Mr. Mundell, why, when so much of the world has acted, is the United Kingdom moving so slowly that caution sits odd oddly, with the government's welcome ambition elsewhere?The generation study is sequencing the whole genomes of 100,000 newborns for more than 200 rare conditions, and the government has committed to offering whole genome sequencing to every newborn within a decade.
A welcome part of its ten year health plan. That is a world leading vision, and I welcome it. But there is somewhat of an irony of promising to read every baby's entire genome within ten years, while today we will not roll out one well-established, internationally proven test for a single treatable condition across the whole of England. Of course, screening decisions must be taken with care. A national programme that affects 650,000 babies a year must be safe, accurate and deliverable across many laboratories.
I recognise that the therapies are relatively new and therefore their lifespan impacts are still require ongoing evaluation. There are legitimate grounds for further research, but the evidence we have on impact now should sharpen our urgency, not dull it. I'm told that the research the screening committee commissioned is. Estimates that screening could each year prevent around two babies needing permanent ventilation prevent around three early deaths, and allow around 37 babies to live a relatively normal life. And the economics are striking, too.
The typical direct costs of caring for a child severely disabled by SMA, not the drugs cost. The care costs are around £450,000 per year. Most of that would be avoidable through diagnosis and treatment at birth. Here, the compassionate course and the fiscally responsible course point the same way. I gently raise one point and the honourable member for Strangford has already made this, that there is a geographical discrepancy across the United Kingdom on this matter as well. Um, and let's welcome the fact that Scotland in Scotland, this is now being rolled out for every newborn.
But that's not the case at all. And no plans that I'm aware of in Northern Ireland or in Wales. So in closing, can reach my conclusion, Mr. Mundell, I began with two little girls, Jessie's girls, and I return to them because the delays to their diagnosis were not inevitable. Had the UK adopted screening at a timetable comparable to that of other countries, Jessie's twins might have been diagnosed before symptoms appeared. We cannot change that, but we can stop it being true for the next family.
An SMA is only the first of many rare genetic conditions where an early, treatable diagnosis will likely become possible in coming years. If we cannot move at a reasonable pace on this one proven, costed, adopted across the world, what does that say for the children of other genetic diseases whose screening tests will be developed in coming years?So I put these questions to the minister, and I hope and I know the petitioner hopes for a specific answers as she's able to give first, will she push for conclusions to be drawn more quickly from the in-service evaluation than the 18 months currently planned?Every month of delay in rollout to the 28% of the population not covered by the evaluation will likely delay the diagnosis of one baby, with serious consequences.
Secondly, what does the minister say to the families of the 13 babies a year who on current plans will be born outside the evaluation's reach?Is there any interim safeguards against a delayed or missed diagnosis?Third, will the minister respond directly to the concern shared by the SMA clinical community that knowingly leaving some babies unscreened when the test and the treatments already exist raises serious ethical concerns?And finally, will the government commit to ensuring that every baby in England is screened for SMA as quickly as possible?Will they continue to roll out to all remaining screening centres, even if that's on a provisional basis?While we are waiting for the evaluation in service.
And by what date can that be achieved?I conclude with a reflection that, as it stands, this disease for this disease. The science has changed faster than our health system has. A condition that was within living memory. Untreatable is now where a test at birth can make the difference between a wheelchair and a childhood spent running around. The petitioners are not asking us to abandon evidence or caution. They are asking us to act with urgency that the international evidence now permits, and to make sure that no baby is left behind simply because of where they are born.
I look forward to contributions, the members and the minister's response.
In this evaluation. But 13 would not. 13 babies a year with the same condition. Born on the wrong side of an arbitrary line. They did not choose who will go undiagnosed until damage is done a baby. Born in one postcode will be screened, treated early and may walk. But a baby born in another in the same week will not. And by the time anyone knows, it may be too late. That is the postcode lottery in its darkest form.
The postcode lottery that Jesse told me about before that deeply concerns her. It's not about a difference in waiting times, but whether a child walks, breathes unaided or feeds normally for life. And this is where Professor Tony's assessment needs to be heard. And he asked me specifically to put this on the record. He described a trial that deliberately leaves some babies unscreened to serve as a comparison group, as his word, unethical. We are withholding from some children a diagnosis.
We are fully capable of making and that we know will help shape their lives. To gather data on something he considers already internationally proven. That is the view not just of one eminent clinician, I am told, but of the wider SMA clinical community to. I'm going to make a little bit of progress and finish the point. I can see the time getting away and I want to make sure people can speak. The question is, Mr. Mundell, why, when so much of the world has acted, is the United Kingdom moving so slowly that caution sits odd oddly, with the government's welcome ambition elsewhere?The generation study is sequencing the whole genomes of 100,000 newborns for more than 200 rare conditions, and the government has committed to offering whole genome sequencing to every newborn within a decade.
A welcome part of its ten year health plan. That is a world leading vision, and I welcome it. But there is somewhat of an irony of promising to read every baby's entire genome within ten years, while today we will not roll out one well-established, internationally proven test for a single treatable condition across the whole of England. Of course, screening decisions must be taken with care. A national programme that affects 650,000 babies a year must be safe, accurate and deliverable across many laboratories.
I recognise that the therapies are relatively new and therefore their lifespan impacts are still require ongoing evaluation. There are legitimate grounds for further research, but the evidence we have on impact now should sharpen our urgency, not dull it. I'm told that the research the screening committee commissioned is. Estimates that screening could each year prevent around two babies needing permanent ventilation prevent around three early deaths, and allow around 37 babies to live a relatively normal life. And the economics are striking, too.
The typical direct costs of caring for a child severely disabled by SMA, not the drugs cost. The care costs are around £450,000 per year. Most of that would be avoidable through diagnosis and treatment at birth. Here, the compassionate course and the fiscally responsible course point the same way. I gently raise one point and the honourable member for Strangford has already made this, that there is a geographical discrepancy across the United Kingdom on this matter as well. Um, and let's welcome the fact that Scotland in Scotland, this is now being rolled out for every newborn.
But that's not the case at all. And no plans that I'm aware of in Northern Ireland or in Wales. So in closing, can reach my conclusion, Mr. Mundell, I began with two little girls, Jessie's girls, and I return to them because the delays to their diagnosis were not inevitable. Had the UK adopted screening at a timetable comparable to that of other countries, Jessie's twins might have been diagnosed before symptoms appeared. We cannot change that, but we can stop it being true for the next family.
An SMA is only the first of many rare genetic conditions where an early, treatable diagnosis will likely become possible in coming years. If we cannot move at a reasonable pace on this one proven, costed, adopted across the world, what does that say for the children of other genetic diseases whose screening tests will be developed in coming years?So I put these questions to the minister, and I hope and I know the petitioner hopes for a specific answers as she's able to give first, will she push for conclusions to be drawn more quickly from the in-service evaluation than the 18 months currently planned?Every month of delay in rollout to the 28% of the population not covered by the evaluation will likely delay the diagnosis of one baby, with serious consequences.
Secondly, what does the minister say to the families of the 13 babies a year who on current plans will be born outside the evaluation's reach?Is there any interim safeguards against a delayed or missed diagnosis?Third, will the minister respond directly to the concern shared by the SMA clinical community that knowingly leaving some babies unscreened when the test and the treatments already exist raises serious ethical concerns?And finally, will the government commit to ensuring that every baby in England is screened for SMA as quickly as possible?Will they continue to roll out to all remaining screening centres, even if that's on a provisional basis?While we are waiting for the evaluation in service.
And by what date can that be achieved?I conclude with a reflection that, as it stands, this disease for this disease. The science has changed faster than our health system has. A condition that was within living memory. Untreatable is now where a test at birth can make the difference between a wheelchair and a childhood spent running around. The petitioners are not asking us to abandon evidence or caution. They are asking us to act with urgency that the international evidence now permits, and to make sure that no baby is left behind simply because of where they are born.
I look forward to contributions, the members and the minister's response.
18:20
Speaker 15
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Speaker 15
The question is that this House has considered. E-petition 755980 relating to spinal muscular atrophy and the newborn screening test. I do not intend to apply a time limit to contributions, and members will note that the usual clocks are not functioning in the in Westminster Hall this afternoon. So if someone does go further than might be reasonably expected, I will intervene on them and I call editor Argar, who I am sure will not.
18:20
Speaker 28
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Speaker 28
Thank you very much, Mr. Mandelson. A pleasure to serve under your chairmanship. I will seek to speak relatively briefly and by way of background, as the honourable member for Sunderland Central, I think, set out very eloquently and indeed I think very reasonably and with passion, um, to the House this afternoon. The case behind this petition, and as we heard every year in the UK, 48 babies are born with SMA, with 60% of those having the most severe form SMA type one. And I was moved to speak in this debate today, not only as a former health minister, but particularly after hearing from my constituent Charlotte, who told me about her son Harvey, who sadly passed away at just shy of seven months old.
Now she very movingly set out to me her experiences and has kindly allowed me to share it with the house today. And I do want to take the opportunity to pay tribute to Charlotte and her family for the courage she shows in being willing to share something so personal, not just with me as her member of Parliament, but to allow me to share it with honourable and right honourable members and indeed more widely, she relates and I quote, and I hope the House will bear with me, because I want to quote her fully, because what she relates is extremely important on.
The 15th of March 2017, I gave birth to my first child, a beautiful, blonde haired, blue eyed boy, Harvey. He was perfect. He was also, unbeknown to us, born with SMA type one. Time parents, having navigated the difficult journey of IVF, we were like rabbits in the headlights and had no idea anything was wrong. But in hindsight, the signs were there quite early on. It was only through the concern of a health visitor when Harvey was ten weeks old, did the journey to his diagnosis begin.
She had sadly come across another baby with SMA one earlier in her 30 year career, and recognised the signs. What Harvey went through to be diagnosed via multiple tests and what we went through as his parents was traumatic. Weeks later we were told by a room full of medical professionals. He had SMA type one and at the very best he would live to two years old. I'll never forget that meeting or the box of tissues that were slipped through the door, just in case we needed one.
I will never forget the walk out of Leicester Royal Infirmary that day, the day our happy bubble burst and our lives changed forever. Nor will I ever forget the subsequent times when we had to go back to the LRC, when Harvey had stopped breathing and I resuscitated him, or to be trained in how to feed him via a nasal feeding tube. In 2017, treatments were still at trial stage. We, as Harvey's parents, decided not to treat Harvey with drugs that hadn't been approved by nice.
Nor did we want to put him through any more trauma and unimaginable decision to make. But we decided to focus on him and his needs as they changed whilst making memories together. Harvey died on the 14th of October 2017. He was a day shy of being seven months old. Now. Charlotte in that told me that she and others in her situation were told that change was coming, that there would be advancement in treatment, that gene therapy was on the way and better diagnoses.
Now, those treatments, as I understand it, as the honourable gentleman set out, do exist. And there are three effective treatments for SMA in the UK. But as with so many health conditions, as I saw during my tenure as a health minister, all too often speed of diagnosis is everything. It needs to be caught early and hence the benefits of newborn screening. And I do pay tribute to the former health secretary in bringing forward to October of this year, ISC, and I'm grateful to him for that.
But as the honourable gentleman said, at only 72% of babies in England will be included, so a large proportion, 163,000 babies won't be screened. Um and the hon. Gentleman who's now left, the member for Strangford highlighted, as did the honourable gentleman, the divergences across different parts of the United Kingdom of Great Britain and Northern Ireland in terms of access. But so until and unless the National Screening Committee makes recommendations on routine screening and sadly, sadly, many of those babies will miss out unless something changes.
And the committee. In truth, and I've seen how the systems within the NHS, often for good reasons, for safety and for rigour, work. But sadly, this suggests by 2030, 2031, that is an awfully long time to wait. An awful lot of young newborns who may be left, or who will be left unscreened and therefore potentially vulnerable to SMA. So in concluding and in paying tribute to Charlotte and her family, my question to the minister, who I know, and I've stood opposite her on many occasions, both in government and now subsequently in opposition.
I know she cares and I know she takes her brief extremely seriously and is a very diligent and caring minister. My simple my question to the minister is very simple for Charlotte and in Harvey's name, what steps can the government take to seek to speed up the process to add SMA to the NHS?Newborn heel prick test for all newborns in this country?Thank you, Mr. Mundell.
Now she very movingly set out to me her experiences and has kindly allowed me to share it with the house today. And I do want to take the opportunity to pay tribute to Charlotte and her family for the courage she shows in being willing to share something so personal, not just with me as her member of Parliament, but to allow me to share it with honourable and right honourable members and indeed more widely, she relates and I quote, and I hope the House will bear with me, because I want to quote her fully, because what she relates is extremely important on.
The 15th of March 2017, I gave birth to my first child, a beautiful, blonde haired, blue eyed boy, Harvey. He was perfect. He was also, unbeknown to us, born with SMA type one. Time parents, having navigated the difficult journey of IVF, we were like rabbits in the headlights and had no idea anything was wrong. But in hindsight, the signs were there quite early on. It was only through the concern of a health visitor when Harvey was ten weeks old, did the journey to his diagnosis begin.
She had sadly come across another baby with SMA one earlier in her 30 year career, and recognised the signs. What Harvey went through to be diagnosed via multiple tests and what we went through as his parents was traumatic. Weeks later we were told by a room full of medical professionals. He had SMA type one and at the very best he would live to two years old. I'll never forget that meeting or the box of tissues that were slipped through the door, just in case we needed one.
I will never forget the walk out of Leicester Royal Infirmary that day, the day our happy bubble burst and our lives changed forever. Nor will I ever forget the subsequent times when we had to go back to the LRC, when Harvey had stopped breathing and I resuscitated him, or to be trained in how to feed him via a nasal feeding tube. In 2017, treatments were still at trial stage. We, as Harvey's parents, decided not to treat Harvey with drugs that hadn't been approved by nice.
Nor did we want to put him through any more trauma and unimaginable decision to make. But we decided to focus on him and his needs as they changed whilst making memories together. Harvey died on the 14th of October 2017. He was a day shy of being seven months old. Now. Charlotte in that told me that she and others in her situation were told that change was coming, that there would be advancement in treatment, that gene therapy was on the way and better diagnoses.
Now, those treatments, as I understand it, as the honourable gentleman set out, do exist. And there are three effective treatments for SMA in the UK. But as with so many health conditions, as I saw during my tenure as a health minister, all too often speed of diagnosis is everything. It needs to be caught early and hence the benefits of newborn screening. And I do pay tribute to the former health secretary in bringing forward to October of this year, ISC, and I'm grateful to him for that.
But as the honourable gentleman said, at only 72% of babies in England will be included, so a large proportion, 163,000 babies won't be screened. Um and the hon. Gentleman who's now left, the member for Strangford highlighted, as did the honourable gentleman, the divergences across different parts of the United Kingdom of Great Britain and Northern Ireland in terms of access. But so until and unless the National Screening Committee makes recommendations on routine screening and sadly, sadly, many of those babies will miss out unless something changes.
And the committee. In truth, and I've seen how the systems within the NHS, often for good reasons, for safety and for rigour, work. But sadly, this suggests by 2030, 2031, that is an awfully long time to wait. An awful lot of young newborns who may be left, or who will be left unscreened and therefore potentially vulnerable to SMA. So in concluding and in paying tribute to Charlotte and her family, my question to the minister, who I know, and I've stood opposite her on many occasions, both in government and now subsequently in opposition.
I know she cares and I know she takes her brief extremely seriously and is a very diligent and caring minister. My simple my question to the minister is very simple for Charlotte and in Harvey's name, what steps can the government take to seek to speed up the process to add SMA to the NHS?Newborn heel prick test for all newborns in this country?Thank you, Mr. Mundell.
18:26
18:26
18:26
18:26
18:27
Speaker 29
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Speaker 29
Under your chairmanship. And I would also like to thank my honourable friend from Sunderland Central for his impressive eloquence. Watching this debate today is my fantastic communications officer who has spinal muscular atrophy and whose insight on this has been incredibly valuable. As mentioned, SMA is a life threatening genetic condition where timing is everything. Without early diagnosis and treatment, irreversible damage does occur within the first months of a baby's life. And as mentioned, left untreated, around 90% of babies born with severe SMA will die before their second birthday or require permanent ventilation just to survive.
But when SMA is caught through newborn screening before symptoms even appear, that trajectory can change completely. Early treatment can halt the disease in its tracks and provide children with opportunities they wouldn't have otherwise. That is why I welcome the news of the screening, and it will begin in parts of England this October. And as mentioned under the current plan, screening will only reach two thirds of England. That leaves an estimated amount of newborns in England excluded. Many of my own constituents in North Somerset rely on Bristol hospitals like Southmead, where my two children were born, which are not among those rolling out screening.
Part of the 28% or so missing out. This really is a postcode lottery, plain and simple. A baby's chance of early diagnosis should not depend on their parents address. As we heard, Scotland has now launched a full national programme. I believe the Republic of Ireland has done the same. We are falling behind our neighbours. While children's futures are decided by geography, I spent nearly 20 years working as a pharmacist. In that time you develop a particular instinct.
If a disease can be treated, you treat it. If a harm can be prevented, you prevent it. That instinct does not leave you. And I agree that the current trial raises serious ethical concerns. So when I consider this issue, the question I keep returning to is straightforward where is it possible to prevent irreversible disability?Why would we not act for every child without delay?Every baby, wherever they're born in the UK, deserves the same chance at a healthy life.
But when SMA is caught through newborn screening before symptoms even appear, that trajectory can change completely. Early treatment can halt the disease in its tracks and provide children with opportunities they wouldn't have otherwise. That is why I welcome the news of the screening, and it will begin in parts of England this October. And as mentioned under the current plan, screening will only reach two thirds of England. That leaves an estimated amount of newborns in England excluded. Many of my own constituents in North Somerset rely on Bristol hospitals like Southmead, where my two children were born, which are not among those rolling out screening.
Part of the 28% or so missing out. This really is a postcode lottery, plain and simple. A baby's chance of early diagnosis should not depend on their parents address. As we heard, Scotland has now launched a full national programme. I believe the Republic of Ireland has done the same. We are falling behind our neighbours. While children's futures are decided by geography, I spent nearly 20 years working as a pharmacist. In that time you develop a particular instinct.
If a disease can be treated, you treat it. If a harm can be prevented, you prevent it. That instinct does not leave you. And I agree that the current trial raises serious ethical concerns. So when I consider this issue, the question I keep returning to is straightforward where is it possible to prevent irreversible disability?Why would we not act for every child without delay?Every baby, wherever they're born in the UK, deserves the same chance at a healthy life.
18:29
18:29
Speaker 30
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Speaker 30
You. It's a pleasure to serve under your chairmanship today, Mr. Mundell. And I really want to welcome the fact that we're having this debate. I don't know what to say, other than if I was one of those amazing parents and advocates in the gallery. I would be absolutely seething with rage. Of the beautiful children that have been born, not because of the cherished and much loved and incredible children that have been born. But because of the fact that we have determined that it will take a significant number of years until we get something in place, that evidence already shows works, but more importantly, saves a child.
Now I want to talk about something a little bit wider than this issue today of spinal muscular atrophy, because for me, at the heart of this, this could be any condition. And I've written to the minister in her role in terms of any amount of childhood conditions and the common factor, and the same with SMA, is that we deem it not important enough. That's what the message is to those families behind me today, those incredible people that advocate so strongly, even when their hearts are breaking. We should not expect them to go through this.
And whether it's SMA or whether it's childhood cancers, the theme is the same. Now, back in January of this year, as a result of the incredible advocacy and work that Jessie did on behalf of her two beautiful children, Ocean and Monroe, I petitioned an early day motion, and that carried the support of 34 members from across this House, which was really significant. And the one thing that people wanted to say whenever they reached out to me, not just in Lagan Valley and not just in Northern Ireland, but across the UK, was that enough is enough?We need to be heard.
Our voices matter and our stories matter. And I want to share with you some remarks from an incredible young woman who I know from Northern Ireland. She is not my constituent, but if I did not say this, there is no way she would forgive me. So I want to read out from the incredible Michaela Hollywood from Northern Ireland. She is not that young. I'm not going to say her age because she'll shout at me, but she is living an incredible life.
And she said, honestly, I won't take a break until every family gets what they need. It's a strange feeling this week. I'm glad that we have the exposure we need to save babies, but I also want the world to know life is just as rich and full. If you can't walk. And those are powerful words because as a long term disability advocate and campaigner, there's something there at the heart of this as well. And I think the mover of this motion today spoke about the cost to families in terms of the emotional and psychological impact.
But the long term physical and other ways that this impacts a family. We work all the time in terms of improving peg feeding for families, and families feel that they have to bash down a door just in order to feed their children. And here we have an option sitting in front of us, proven to work. It will save lives and to me, 20, 30, 20, 31. We don't need to waste the extra time having the debate here about whether this is worth doing.
We agree it is worth doing. We agree it saves lives. Now we need to just get on urgently and do it.
Now I want to talk about something a little bit wider than this issue today of spinal muscular atrophy, because for me, at the heart of this, this could be any condition. And I've written to the minister in her role in terms of any amount of childhood conditions and the common factor, and the same with SMA, is that we deem it not important enough. That's what the message is to those families behind me today, those incredible people that advocate so strongly, even when their hearts are breaking. We should not expect them to go through this.
And whether it's SMA or whether it's childhood cancers, the theme is the same. Now, back in January of this year, as a result of the incredible advocacy and work that Jessie did on behalf of her two beautiful children, Ocean and Monroe, I petitioned an early day motion, and that carried the support of 34 members from across this House, which was really significant. And the one thing that people wanted to say whenever they reached out to me, not just in Lagan Valley and not just in Northern Ireland, but across the UK, was that enough is enough?We need to be heard.
Our voices matter and our stories matter. And I want to share with you some remarks from an incredible young woman who I know from Northern Ireland. She is not my constituent, but if I did not say this, there is no way she would forgive me. So I want to read out from the incredible Michaela Hollywood from Northern Ireland. She is not that young. I'm not going to say her age because she'll shout at me, but she is living an incredible life.
And she said, honestly, I won't take a break until every family gets what they need. It's a strange feeling this week. I'm glad that we have the exposure we need to save babies, but I also want the world to know life is just as rich and full. If you can't walk. And those are powerful words because as a long term disability advocate and campaigner, there's something there at the heart of this as well. And I think the mover of this motion today spoke about the cost to families in terms of the emotional and psychological impact.
But the long term physical and other ways that this impacts a family. We work all the time in terms of improving peg feeding for families, and families feel that they have to bash down a door just in order to feed their children. And here we have an option sitting in front of us, proven to work. It will save lives and to me, 20, 30, 20, 31. We don't need to waste the extra time having the debate here about whether this is worth doing.
We agree it is worth doing. We agree it saves lives. Now we need to just get on urgently and do it.
18:33
18:33
Speaker 17
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Speaker 17
With you as chair here today. And I'd like to thank my hon. Friend the member for Sunderland Central for opening this vital debate on behalf of the nearly 150 000 people who signed the petition, and I'm glad that with the help and promotion of Jessie Nelson, who brought forward this petition, we are able to highlight the need for preventative action to be taken to protect children from the impact of SMA. Mr. Mundell, in my work over the years with the All-Party parliamentary Group on Rare Genetic and Undiagnosed Conditions, I have supported the campaign for Newborn Screening for Spinal Muscular Atrophy closely for many years, and I want to start Mr.
Mundell by praising the work of SMA, UK and Muscular Dystrophy UK, who led the campaign. Every moment matters. Along with Genetic Alliance UK to press for newborn screening for SMA. Uh, it's absolutely fabulous that, uh, with the help of Jessie Nelson, been able to put the focus on this issue and press the former health secretary, the member for Ilford North, to take real action on this, though it is very sad that she had to learn from her own heartbreaking experience of the devastating impact of SMA. With SMA.
Mr. Mundell, time is muscle. The condition causes rapid and irreversible neurodegeneration by six months of age. An untreated baby with SMA type one will lose 95% of their lower motor neurons. We have transformational treatments available on the NHS, but we are diagnosing babies. Too late for them to receive the maximum benefit. And I have seen the life changing difference. Early diagnosis makes for a family in my Blaydon and Consett constituency. I want to talk about two brothers, Freddie and Louis and.
Freddie is a happy, social and determined young man and he is hugely benefited from access to the lifelong treatment Nusinersen, which his family say saved his life and independence. But they still face challenges and costs in securing the equipment needed to allow Freddie to have the freedom he needs and deserves, including fundraising with the community for an all terrain wheelchair that allows him to take part in as many activities as possible with his peers. Now, because Freddie was diagnosed with SMA, his younger brother Louis was screened for SMA and diagnosed before birth, and as a result, Louis became the youngest pre-symptomatic baby in the UK with SMA type two to receive Zolgensma.
A groundbreaking new gene therapy at just 18 days old. And since getting that treatment, Louis has done well and is able to live his life free from the disease now. Um, it is completely transformational system. But this testing was only available to siblings creating as we've heard, an unacceptable health inequality where the wider population is denied the same chance of a healthy life. I will.
Mundell by praising the work of SMA, UK and Muscular Dystrophy UK, who led the campaign. Every moment matters. Along with Genetic Alliance UK to press for newborn screening for SMA. Uh, it's absolutely fabulous that, uh, with the help of Jessie Nelson, been able to put the focus on this issue and press the former health secretary, the member for Ilford North, to take real action on this, though it is very sad that she had to learn from her own heartbreaking experience of the devastating impact of SMA. With SMA.
Mr. Mundell, time is muscle. The condition causes rapid and irreversible neurodegeneration by six months of age. An untreated baby with SMA type one will lose 95% of their lower motor neurons. We have transformational treatments available on the NHS, but we are diagnosing babies. Too late for them to receive the maximum benefit. And I have seen the life changing difference. Early diagnosis makes for a family in my Blaydon and Consett constituency. I want to talk about two brothers, Freddie and Louis and.
Freddie is a happy, social and determined young man and he is hugely benefited from access to the lifelong treatment Nusinersen, which his family say saved his life and independence. But they still face challenges and costs in securing the equipment needed to allow Freddie to have the freedom he needs and deserves, including fundraising with the community for an all terrain wheelchair that allows him to take part in as many activities as possible with his peers. Now, because Freddie was diagnosed with SMA, his younger brother Louis was screened for SMA and diagnosed before birth, and as a result, Louis became the youngest pre-symptomatic baby in the UK with SMA type two to receive Zolgensma.
A groundbreaking new gene therapy at just 18 days old. And since getting that treatment, Louis has done well and is able to live his life free from the disease now. Um, it is completely transformational system. But this testing was only available to siblings creating as we've heard, an unacceptable health inequality where the wider population is denied the same chance of a healthy life. I will.
18:36
Speaker 32
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Speaker 32
Thank you for giving way. Um, I was recently contacted by a constituent whose daughter was diagnosed with SMA type one at five months old and in her own words, five months too late. Her child is now two and needs full time wheelchair and cannot sit or stand unaided. And she depends on specialist equipment and multiple weekly visits and appointments. This is no way for a toddler to live. Um, so does the honourable member agree that families like my constituents, um, urgently need the government to fast track the rollout of testing programme to all children in all areas to ensure the best possible outcomes for children affected by the condition.
As she speaks of as her, the example she's given.
As she speaks of as her, the example she's given.
18:37
Speaker 17
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Speaker 17
I thank the member for that intervention. I most certainly do agree with that. There is a test available. It should be made available to everyone to prevent people living with the effects of SMA, which could have been diagnosed and treated. So, um, so as I was saying, it's important that we now have testing, but we must expand it to the whole of the UK to pick up that point and do so very quickly. I will give way.
18:37
Speaker 18
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Speaker 18
Thank you. And on that note, I thank you for giving way. Thank you chair. Would my honourable member agree with me that actually, we need to be asking the government, why do babies born in Portsmouth matter less than other babies born in other parts of the country?Because if we're not one of those six that's going or we're under six, it's not going to have that testing or screening, then the babies born in my city have a less chance and and are therefore less valued.
18:38
Speaker 17
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Speaker 17
Well, I thank my honourable friend for that intervention. And I most certainly do agree with the point that she's making, which I think is a point that the honourable member from the City of Sunderland, Sunderland Central, made in his opening remarks. It's only right that all. Babies should have access to that. And we know the clinical consensus is absolute. In February, 25, leading clinicians published a letter in The Lancet contrasting the UK with countries that have screening programmes.
In Belgium, babies born with SMA are ambulant. In the UK, babies with the exact same condition are still dying or remaining permanently reliant on ventilatory support and tube feeding. And indeed, Mr. Mundell, on the wider issue of newborn screening, there are a whole range of of tests and conditions which could be the subject of testing and where we are behind the world in, in testing and the Genetic Alliance UK and the Appg for genetic, and undiagnosed conditions are asking for a clear timeline for a systematic review of the NHS newborn screening programme from each of the four governments across the UK.
To ensure that we don't miss the opportunity to give more children a better and a healthier life. But returning to the issue of SMA screening, the UK National Screening Committee's own updated model from August 25th confirms that introducing screening, as we've heard, will prevent three early deaths and stop two babies from requiring permanent ventilation every single year. And crucially, it would also prevent about 30 babies from being confined to sitting and enable 37 babies to live a largely normal life annually. And there's a rigorous financial case for acting now, treating SMA pre early reduces the need for lifelong mechanical ventilation and round the clock care.
Introducing newborn screening would result in lifetime savings to the public purse of over £62 million and 529 quality adjusted life years for each annual cohort of newborns diagnosed. I was very relieved by the government's announcement last month that the in service evaluation for SMA screening will finally begin in England this October. However, the government confirmed on the 16th of June that the evaluation would only cover part of the country. As we've heard, and specifically with only launching the seven newborn screening laboratories that already have the required equipment, there must be a way of getting around this problem so that all of our babies can be tested and can receive the appropriate treatment if necessary.
And as we've heard, the Scottish Government began a national screening pilot for all newborns earlier this year, and Ireland announced the introduction of their own screening programme in April. Mr. Mundell we cannot accept a health system where a baby's chance of typical neuromuscular development depends entirely on which hospital they happen to be born in. I asked the minister today to confirm whether the evaluation will be extended to cover all of England, as well as Wales and Northern Ireland immediately. For the sake of those children, we have the treatment, we have the economic case and we have the diagnostic tools.
We must stop denying babies the chance of a healthier future.
In Belgium, babies born with SMA are ambulant. In the UK, babies with the exact same condition are still dying or remaining permanently reliant on ventilatory support and tube feeding. And indeed, Mr. Mundell, on the wider issue of newborn screening, there are a whole range of of tests and conditions which could be the subject of testing and where we are behind the world in, in testing and the Genetic Alliance UK and the Appg for genetic, and undiagnosed conditions are asking for a clear timeline for a systematic review of the NHS newborn screening programme from each of the four governments across the UK.
To ensure that we don't miss the opportunity to give more children a better and a healthier life. But returning to the issue of SMA screening, the UK National Screening Committee's own updated model from August 25th confirms that introducing screening, as we've heard, will prevent three early deaths and stop two babies from requiring permanent ventilation every single year. And crucially, it would also prevent about 30 babies from being confined to sitting and enable 37 babies to live a largely normal life annually. And there's a rigorous financial case for acting now, treating SMA pre early reduces the need for lifelong mechanical ventilation and round the clock care.
Introducing newborn screening would result in lifetime savings to the public purse of over £62 million and 529 quality adjusted life years for each annual cohort of newborns diagnosed. I was very relieved by the government's announcement last month that the in service evaluation for SMA screening will finally begin in England this October. However, the government confirmed on the 16th of June that the evaluation would only cover part of the country. As we've heard, and specifically with only launching the seven newborn screening laboratories that already have the required equipment, there must be a way of getting around this problem so that all of our babies can be tested and can receive the appropriate treatment if necessary.
And as we've heard, the Scottish Government began a national screening pilot for all newborns earlier this year, and Ireland announced the introduction of their own screening programme in April. Mr. Mundell we cannot accept a health system where a baby's chance of typical neuromuscular development depends entirely on which hospital they happen to be born in. I asked the minister today to confirm whether the evaluation will be extended to cover all of England, as well as Wales and Northern Ireland immediately. For the sake of those children, we have the treatment, we have the economic case and we have the diagnostic tools.
We must stop denying babies the chance of a healthier future.
18:42
18:42
18:42
Speaker 33
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Speaker 33
And it is a pleasure to serve under your chairmanship, Mr. Mundell. And I thank the honourable member for Sunderland Central for bringing forward this really important debate. On behalf of the Petitions Committee, of which I am proud to be a member of as well, and I am grateful to every single person who has added their name to this petition, and I pay tribute to the lead petitioner, Jesy Nelson, who has used her own personal experience and public platform to raise the awareness of spinal muscular atrophy, of which we know is a rare neuromuscular genetic condition that has caused that causes muscular weakness, movement problems, difficulties in breathing and swallowing, tremors and bone and joint problems.
And whilst these symptoms are most often noticed in babies and toddlers, they can also start in teenagers and adults as well. And it is an extremely cruel disease that has touched many people across the country and beyond. And this is evident, given the petition that we are debating today. And, um, the simple fact that it has received nearly 150,000 signatures, including that of my constituent, Nasser Iqbal, Nasser's daughter, was diagnosed with SMA type one, which is the most severe form. His daughter was diagnosed three months after birth, and she is unable to walk or eat due to nerve damage caused by her condition being left undiagnosed and therefore untreated.
In the first few months of her life. Now, we know that every year in the UK, 48 babies are born with a muscular spinal muscular atrophy, with 60% of those having SMA. Type one. Once symptoms begin, damage to motor neurons cannot be undone. However, there is clear evidence that babies who are diagnosed before symptoms appear have significantly better health outcomes, with many able to reach development milestones that would not have been able to or be reached or be possible without that early intervention.
This would have made a huge difference had that early intervention took place to NASA's daughter, and I am proud to be able to speak in this debate on his daughter's behalf, because it is his daughter and many other young people across the country, of course, that are being impacted. Without that early screening. That is why this petition is calling on the UK government to fund and help fast track the process to add SMA to the NHS. Newborn heel prick test so that every baby is screened at birth to allow early diagnosis and access to life changing treatment.
Whilst screening for SMA in newborn babies is currently recommended, but is currently not recommended by the UK National Screening Committee. It has confirmed that an in-service evaluation of newborn screening to SMA will be starting in October 2026. However, these plans will only include seven of the 13 regions. As many members have said in this debate so far, leaving approximately 163 babies without screening until as late as 2030, 2031. And I have to say, Mr. Mundell, that I am disappointed that one of these areas not included within the Isa ISE of newborn screening for SMA is West Yorkshire, and I am extremely concerned that this will leave my constituents across Keighley and Ilkley without access to this potentially life saving screening.
Despite the ever growing need for it, Yorkshire has 1.5 times as many patients with SMA compared to national figures, and in the last three years alone, the regional. Neuromuscular service in Leeds has diagnosed ten infants with the most severe form of SMA. Two tragically died within their first year of life and two have survived, but both live with significant and long life disability. Neither child can stand or walk independently, and they require nighttime respiratory support and are unable to feed themselves and need support for feeding.
By comparison, the four children diagnosed and treated pre symptomatically have achieved their expected motor neuron milestones and they are sitting and walking as expected for their age. And I want to pay tribute to the Leeds Teaching Hospital for reaching out to me before this debate, and in particular to Doctor Ann Marie Childs and her team. Um, the pediatric neurologists at Leeds Teaching Hospital who clearly asked me to ask the minister that we can't be in a scenario where not every child, not every newborn baby in the UK, has access to early diagnosis and life changing treatment.
And I would therefore call on the minister to make sure that West Yorkshire and my constituents across Keighley and Ilkley are included as part of the early screening process. Chairman, as we have heard today, SMAI will give way.
And whilst these symptoms are most often noticed in babies and toddlers, they can also start in teenagers and adults as well. And it is an extremely cruel disease that has touched many people across the country and beyond. And this is evident, given the petition that we are debating today. And, um, the simple fact that it has received nearly 150,000 signatures, including that of my constituent, Nasser Iqbal, Nasser's daughter, was diagnosed with SMA type one, which is the most severe form. His daughter was diagnosed three months after birth, and she is unable to walk or eat due to nerve damage caused by her condition being left undiagnosed and therefore untreated.
In the first few months of her life. Now, we know that every year in the UK, 48 babies are born with a muscular spinal muscular atrophy, with 60% of those having SMA. Type one. Once symptoms begin, damage to motor neurons cannot be undone. However, there is clear evidence that babies who are diagnosed before symptoms appear have significantly better health outcomes, with many able to reach development milestones that would not have been able to or be reached or be possible without that early intervention.
This would have made a huge difference had that early intervention took place to NASA's daughter, and I am proud to be able to speak in this debate on his daughter's behalf, because it is his daughter and many other young people across the country, of course, that are being impacted. Without that early screening. That is why this petition is calling on the UK government to fund and help fast track the process to add SMA to the NHS. Newborn heel prick test so that every baby is screened at birth to allow early diagnosis and access to life changing treatment.
Whilst screening for SMA in newborn babies is currently recommended, but is currently not recommended by the UK National Screening Committee. It has confirmed that an in-service evaluation of newborn screening to SMA will be starting in October 2026. However, these plans will only include seven of the 13 regions. As many members have said in this debate so far, leaving approximately 163 babies without screening until as late as 2030, 2031. And I have to say, Mr. Mundell, that I am disappointed that one of these areas not included within the Isa ISE of newborn screening for SMA is West Yorkshire, and I am extremely concerned that this will leave my constituents across Keighley and Ilkley without access to this potentially life saving screening.
Despite the ever growing need for it, Yorkshire has 1.5 times as many patients with SMA compared to national figures, and in the last three years alone, the regional. Neuromuscular service in Leeds has diagnosed ten infants with the most severe form of SMA. Two tragically died within their first year of life and two have survived, but both live with significant and long life disability. Neither child can stand or walk independently, and they require nighttime respiratory support and are unable to feed themselves and need support for feeding.
By comparison, the four children diagnosed and treated pre symptomatically have achieved their expected motor neuron milestones and they are sitting and walking as expected for their age. And I want to pay tribute to the Leeds Teaching Hospital for reaching out to me before this debate, and in particular to Doctor Ann Marie Childs and her team. Um, the pediatric neurologists at Leeds Teaching Hospital who clearly asked me to ask the minister that we can't be in a scenario where not every child, not every newborn baby in the UK, has access to early diagnosis and life changing treatment.
And I would therefore call on the minister to make sure that West Yorkshire and my constituents across Keighley and Ilkley are included as part of the early screening process. Chairman, as we have heard today, SMAI will give way.
18:47
Speaker 31
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Speaker 31
Giving way. Both he and the honourable member for Sunderland Central very eloquently and powerfully laid out. Uh, the ethics around leaving out some children from screening as well as the deep, deep unfairness that other children face by not being screened. Um, isn't there also an issue about evidence when you're talking about a rare disease?The numbers are so low, actually, it makes sense to include the whole of England in this essentially clinical trial being run by the NHS. And if you need a control arm to compare data against, there will be historical data for those children who weren't screened and treated too late.
So I, I genuinely am perplexed why the government has not just included every testing centre or every laboratory in this trial, in the in service evaluation. Does he agree with me?
So I, I genuinely am perplexed why the government has not just included every testing centre or every laboratory in this trial, in the in service evaluation. Does he agree with me?
18:47
Speaker 33
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Speaker 33
I thank the honourable member for her intervention. I absolutely agree with her, because the reality of it is when you're dealing with rare diseases like this, you're better to cast the net far and wide to get in as much data as possible. And that was one of the points that was actually made to me by the Leeds Teaching Hospital and Doctor Ann Marie Childs, who is advocating for West Yorkshire to be included as part of the early screening process, because the reality of it is, at the moment it's a postcode lottery.
Wherever you happen to be born depends absolutely on whether you have access to that early screening. Indeed, that data collection that would feed into national reassurance that the government should be focusing on this. And it is it pains me to say that we are in a scenario right now, today, that if you are a child being born in my constituency of Keighley and Ilkley, within West Yorkshire, you don't have access to that early screening. And that's why I absolutely concur with the honourable member for Twickenham in her points that she has just made.
So to conclude, Mr. Mundell, as we have heard today, SMA is a debilitating, debilitating condition and whilst it cannot be prevented, the outcomes are significantly better for babies who are diagnosed early. Looking at the progress that has been made in Scotland, which began screening newborn babies for SMA in March based on in service evaluations, I urge the government to ensure that no child is left behind and that we roll out that screening for every child, no matter where they are born in this country.
Wherever you happen to be born depends absolutely on whether you have access to that early screening. Indeed, that data collection that would feed into national reassurance that the government should be focusing on this. And it is it pains me to say that we are in a scenario right now, today, that if you are a child being born in my constituency of Keighley and Ilkley, within West Yorkshire, you don't have access to that early screening. And that's why I absolutely concur with the honourable member for Twickenham in her points that she has just made.
So to conclude, Mr. Mundell, as we have heard today, SMA is a debilitating, debilitating condition and whilst it cannot be prevented, the outcomes are significantly better for babies who are diagnosed early. Looking at the progress that has been made in Scotland, which began screening newborn babies for SMA in March based on in service evaluations, I urge the government to ensure that no child is left behind and that we roll out that screening for every child, no matter where they are born in this country.
18:49
Speaker 34
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Speaker 34
And I'd like to thank my hon. Friend the member for Sunderland Central for leading on this important debate. On behalf of the petition committee. And I'd also like to thank the 306 residents of Newport West and East Lothian who signed the petition. I was delighted to meet with the chief exec of SMA, UK, Giles Lomax, on a number of occasions, and I'd like to pay tribute to his tireless advocacy and I'd also like to take a moment, of course, to add my thanks to Jessie Nelson for her work to raise awareness about SMA.
Following the diagnosis of her twin daughters, and we've already heard today, Mr. Mundell, in this debate that SMA is a serious but rare genetic condition which causes progressive muscle weakness and deterioration. And I should declare that in my previous life as a paediatric physiotherapist, I did treat a number of children and babies with SMA. So I do know a little bit of the struggles that families go through in just coming to terms with the diagnosis, but also the treatment, the ongoing need, the Aids and adaptations that are required throughout the child's life.
We know that currently there is no cure. But thanks to the transformative research, treatment can slow symptoms and even stop progression. As a result, early detection and treatment of SMA due to newborn screening can dramatically improve the well-being of patients. This includes a significant benefits has already been highlighted to respiratory health, motor function and life expectancy being. Totally hard hearted, Mr. Mundell catching SMA early via screening not only saves lives, but it saves taxpayers money without pre-symptomatic treatment. The Lancet estimates annual health costs for a single child to be around £75,000.
That's not including the wider mental health issues. The equipment the carer cost, housing adaptations, disability benefits. All these costs can run into hundreds of thousands of pounds per family. So it's not only morally right, it's financially prudent to roll out the screening to all children straight away, and I'm pleased that the Scottish Government has has recognised the public case for newborn screening, becoming the first nation in the UK to add SMA to its universal screening programme. And I would say if they can do it, why can't the rest of us?It's really important.
I'm pushing for all constituent nations of the UK to learn from this example and urgently explore how we roll out universal screening for SMA. We cannot risk this postcode lottery that's been mentioned already tonight. Children with SMA should not have their life chances determined by which part of the UK they live in. To this point, I also welcome the progress made in England to extend access to newborn screening, although we know it's not far enough, these 72% of babies born in England will be screened.
But we must go further, obviously, and we know that the previous Health Secretary did commit to expand the I s to ensure more children could be screened, so I would be grateful if the Minister today could update us on the progress on delivering this in her wind up tonight, whilst significant progress has been made in England, Wales is still yet to have any plans for screening roll out. This is despite Wales being uniquely well positioned to participate in the I. S screening for facilities at Cardiff and Vale University Health Board are currently being upgraded and have the capacity to facilitate newborn blood spot screening for every child born in Wales.
This means a single, modest investment of around £1.5 million single one off could deliver 100% coverage and certainty for parents. Of the 27,000 children in Wales born every year. Given this unique opportunity, the decision thus far by the Welsh Government to not participate in the Is is extremely frustrating. So I have written multiple times to the previous Welsh Cabinet Secretary for Health and Social Care, urging him to reconsider this short sighted decision. Whilst the NHS in Wales faces many challenges and competing demands for future investment, I will continue to press the new Welsh Government to participate in the I s waiting till the I concludes.
No babies being screened until the National Screening Council makes its formal recommendations in 2034 years. More of missed opportunities for Welsh babies. Given the clear benefits of cross-border working across our union, I wonder, could the Minister also outline what conversations she and her colleagues have had with their Welsh Government counterparts about the I s and how Wales could participate in it?And I appreciate she can't answer tonight. If she could write to me, I'd be really grateful for that. To conclude, Mr.
Mundell, whilst the effects of SM can be dramatic screening and early treatment offer the opportunity for us to transform these children's lives, we need now to ensure that all babies across every nation of the UK receive bloodspot screening for SMA, so no child's future is determined by their postcode. Thank you.
Following the diagnosis of her twin daughters, and we've already heard today, Mr. Mundell, in this debate that SMA is a serious but rare genetic condition which causes progressive muscle weakness and deterioration. And I should declare that in my previous life as a paediatric physiotherapist, I did treat a number of children and babies with SMA. So I do know a little bit of the struggles that families go through in just coming to terms with the diagnosis, but also the treatment, the ongoing need, the Aids and adaptations that are required throughout the child's life.
We know that currently there is no cure. But thanks to the transformative research, treatment can slow symptoms and even stop progression. As a result, early detection and treatment of SMA due to newborn screening can dramatically improve the well-being of patients. This includes a significant benefits has already been highlighted to respiratory health, motor function and life expectancy being. Totally hard hearted, Mr. Mundell catching SMA early via screening not only saves lives, but it saves taxpayers money without pre-symptomatic treatment. The Lancet estimates annual health costs for a single child to be around £75,000.
That's not including the wider mental health issues. The equipment the carer cost, housing adaptations, disability benefits. All these costs can run into hundreds of thousands of pounds per family. So it's not only morally right, it's financially prudent to roll out the screening to all children straight away, and I'm pleased that the Scottish Government has has recognised the public case for newborn screening, becoming the first nation in the UK to add SMA to its universal screening programme. And I would say if they can do it, why can't the rest of us?It's really important.
I'm pushing for all constituent nations of the UK to learn from this example and urgently explore how we roll out universal screening for SMA. We cannot risk this postcode lottery that's been mentioned already tonight. Children with SMA should not have their life chances determined by which part of the UK they live in. To this point, I also welcome the progress made in England to extend access to newborn screening, although we know it's not far enough, these 72% of babies born in England will be screened.
But we must go further, obviously, and we know that the previous Health Secretary did commit to expand the I s to ensure more children could be screened, so I would be grateful if the Minister today could update us on the progress on delivering this in her wind up tonight, whilst significant progress has been made in England, Wales is still yet to have any plans for screening roll out. This is despite Wales being uniquely well positioned to participate in the I. S screening for facilities at Cardiff and Vale University Health Board are currently being upgraded and have the capacity to facilitate newborn blood spot screening for every child born in Wales.
This means a single, modest investment of around £1.5 million single one off could deliver 100% coverage and certainty for parents. Of the 27,000 children in Wales born every year. Given this unique opportunity, the decision thus far by the Welsh Government to not participate in the Is is extremely frustrating. So I have written multiple times to the previous Welsh Cabinet Secretary for Health and Social Care, urging him to reconsider this short sighted decision. Whilst the NHS in Wales faces many challenges and competing demands for future investment, I will continue to press the new Welsh Government to participate in the I s waiting till the I concludes.
No babies being screened until the National Screening Council makes its formal recommendations in 2034 years. More of missed opportunities for Welsh babies. Given the clear benefits of cross-border working across our union, I wonder, could the Minister also outline what conversations she and her colleagues have had with their Welsh Government counterparts about the I s and how Wales could participate in it?And I appreciate she can't answer tonight. If she could write to me, I'd be really grateful for that. To conclude, Mr.
Mundell, whilst the effects of SM can be dramatic screening and early treatment offer the opportunity for us to transform these children's lives, we need now to ensure that all babies across every nation of the UK receive bloodspot screening for SMA, so no child's future is determined by their postcode. Thank you.
18:54
18:54
18:54
Speaker 29
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Speaker 29
It's a pleasure to serve under your chairmanship. And can I thank the my hon. Friend from Sunderland Central for his opening this debate and really framing it for us all. I also want to thank and not just because he heard me just then, the honourable member for Melton and Cistern Cistern, um, for sharing Harvey's story with us. It was really powerful. And I hope that, um, in this debate, Harvey's memory will live on for us. I rise to speak in this debate, firstly, because I am a new father who celebrated his first Father's Day yesterday, and I know how important it is for all new parents to know that your baby is healthy.
It is also, um, an issue. I am very proud to say so many of my constituents, which as people will bear borders, Broxbourne felt so passionately about and signed the petition. I thank the work of spinal Muscular Atrophy UK and muscular Dystrophy Dystrophy UK, who have asked for SMA to be included in the newborn screening programme. As members will know, the beginning of this year, um. This issue came to the fore when Jessie Nelson's twin daughters were diagnosed with SM SMA, and I thank the then Health Secretary at the time for meeting with her and subsequently the petition.
We are all here today. The subsequent petition was launched, which is why we're all here today. That in response to this petition, the government has started to roll out an in-service evaluation in NHS screening services. But like campaigners and others who have spoken, and many residents in Harlow who have signed this petition, I had my first. Are urging, I add my voice, urging the government to go further and faster because the 18 months for evaluation quoted is just too long, as so many young people are, so many young babies are going to not be diagnosed because of that.
As my hon. Friend for Sunderland Central has said, the sooner this treatment is administrated, the less the impact on these young people. And that's really important. And I also welcome his comments about screening not becoming a postcode lottery, because that is really important. And I hope the Minister has heard the passionate words from members across the House in particularly my hon. Friend from Portsmouth North, who obviously is hugely passionate that her residents are not left out and I.
I would feel the same if it was my constituency. Um, finally, Mr. Mundell chair. Having worked with children pretty much all my life before I came to this place, particularly young people with lifelong disabilities and also also their parents, I know the trauma they face. Um, never really goes away. And the more we can do to support them and their children, the better.
It is also, um, an issue. I am very proud to say so many of my constituents, which as people will bear borders, Broxbourne felt so passionately about and signed the petition. I thank the work of spinal Muscular Atrophy UK and muscular Dystrophy Dystrophy UK, who have asked for SMA to be included in the newborn screening programme. As members will know, the beginning of this year, um. This issue came to the fore when Jessie Nelson's twin daughters were diagnosed with SM SMA, and I thank the then Health Secretary at the time for meeting with her and subsequently the petition.
We are all here today. The subsequent petition was launched, which is why we're all here today. That in response to this petition, the government has started to roll out an in-service evaluation in NHS screening services. But like campaigners and others who have spoken, and many residents in Harlow who have signed this petition, I had my first. Are urging, I add my voice, urging the government to go further and faster because the 18 months for evaluation quoted is just too long, as so many young people are, so many young babies are going to not be diagnosed because of that.
As my hon. Friend for Sunderland Central has said, the sooner this treatment is administrated, the less the impact on these young people. And that's really important. And I also welcome his comments about screening not becoming a postcode lottery, because that is really important. And I hope the Minister has heard the passionate words from members across the House in particularly my hon. Friend from Portsmouth North, who obviously is hugely passionate that her residents are not left out and I.
I would feel the same if it was my constituency. Um, finally, Mr. Mundell chair. Having worked with children pretty much all my life before I came to this place, particularly young people with lifelong disabilities and also also their parents, I know the trauma they face. Um, never really goes away. And the more we can do to support them and their children, the better.
18:57
18:57
Speaker 35
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Speaker 35
Thank you. It's a pleasure to serve under your chairmanship, Mr. Mundell. And I'd like to thank the honourable member for Sunderland Central for opening today's debate so well. I'm grateful to the petitioners on securing this debate, including the 287 constituents in my own patch of mid-sussex and. To the many families, clinicians, charities and campaigners who have worked so hard to raise awareness of spinal muscular atrophy and the importance of newborn screening, I would like to say a big thank you, and I truly mean that.
This is an issue that goes to the heart of what our health service should be about, identifying serious conditions as early as possible, ensuring equal access to life, changing treatment, and giving every child the best possible start in life. Spinal muscular atrophy, or SMA, is a devastating genetic condition. As the Right Honourable member for Melton and Syston so eloquently set out when he shared that letter. It causes progressive, muscular weakness and can have a profound impact on almost every aspect of a person's life.
Many people with SMA face significant mobility challenges, difficulties with breathing and bone, and joint complications, such such as scoliosis. The diagnosis can be life changing for whole families. It brings uncertainty, anxiety and in many cases, the prospect of intensive and lifelong care needs. And historically, SMA was one of the leading genetic causes of infant mortality. Before effective treatments became available, up to 90% of babies with the most severe forms of the condition would die or require permanent ventilation before the age of two.
That is a stark statistic, and it reminds us just how serious this condition can be. Thankfully, the picture today is different because of years of scientific research, medical innovation, and the determination of patients, families and campaigners. We now have treatments that can dramatically alter outcomes for children diagnosed with SMA. These advantages advances represent one of the great success stories of modern medicine. But there is one crucial factor that determines how successful those treatments can be. Timing the earlier SMA is diagnosed, the better the outcomes.
In many cases, treatment before symptoms develop can prevent irreversible damage to motor neurons and dramatically improve children's future quality of life. Earlier diagnosis can mean the difference between a child learning to walk independently or never achieving that milestone. That is why newborn screening matters. As all the honourable members who have taken part in today's debate have made so clear, this debate is about ensuring that children can benefit from treatments at the point when those treatments are most effective. It is about giving families the opportunity that comes with early intervention, and it is about ensuring that where a child is born does not determine whether they have access to life changing care.
That is why there is an understandable concern about the current rollout of the in-service evaluation for SMA screening. The principle behind the evaluation is sensible gathering evidence and ensuring the NHS is prepared for wider implementation are important objectives. However, the rollout to date has been inconsistent and incomplete. Some parts of the country have been included, while others have, we have heard, have not. Families living in areas such as Oxfordshire currently have no access at all. My hon. Friend the member for Henley and Thame has been campaigning tirelessly on behalf of constituents affected by this issue and in response to a parliamentary question he submitted, it was confirmed that the current in-service evaluation will offer screening to around 400,000 babies.
By comparison, a national screening programme would cover approximately 650,000 babies every year. In other words, under the current arrangements, around one third of babies born each year will not be covered by the evaluation. That inevitably raises questions not only those made by my hon. Friend the member for Twickenham, who rightly said that rare conditions should cast the widest net. Possibly, but also why access screening should depend on geography. Why should one family benefit from early detection, while another family living elsewhere does not?And if the evidence increasingly points to the importance of early diagnosis, how can we possibly justify such uneven access?Too often in our NHS, patients and families face postcode lotteries, whether it is access to dentists, GPS, mental health services or specialist treatment, geography can end up determining outcomes.
The government and NHS England have acknowledged concerns about the current rollout. We welcome indications that NHS England is considering whether implementation can move faster, and whether the evaluation could potentially be extended more widely. That is encouraging, but families and clinicians need greater certainty. At present, there is a lack of clarity about how long the evaluation will run, when additional sites may be added, and when a final decision on a national screening programme can be expected. Those are reasonable questions and people deserve those answers.
The minister may point to the need for robust evidence before national implementation. Of course, evidence matters. Of course, changes to screening programmes must be safe, effective and carefully planned. But if the stated purpose of the in-service evaluation is to gather evidence, surely there is a strong case for gathering that evidence from as broad and as representative a population as possible. A wider rollout would not only improve equity of access, it would also strengthen the evidence base on which future decisions will be made.
I will give way.
This is an issue that goes to the heart of what our health service should be about, identifying serious conditions as early as possible, ensuring equal access to life, changing treatment, and giving every child the best possible start in life. Spinal muscular atrophy, or SMA, is a devastating genetic condition. As the Right Honourable member for Melton and Syston so eloquently set out when he shared that letter. It causes progressive, muscular weakness and can have a profound impact on almost every aspect of a person's life.
Many people with SMA face significant mobility challenges, difficulties with breathing and bone, and joint complications, such such as scoliosis. The diagnosis can be life changing for whole families. It brings uncertainty, anxiety and in many cases, the prospect of intensive and lifelong care needs. And historically, SMA was one of the leading genetic causes of infant mortality. Before effective treatments became available, up to 90% of babies with the most severe forms of the condition would die or require permanent ventilation before the age of two.
That is a stark statistic, and it reminds us just how serious this condition can be. Thankfully, the picture today is different because of years of scientific research, medical innovation, and the determination of patients, families and campaigners. We now have treatments that can dramatically alter outcomes for children diagnosed with SMA. These advantages advances represent one of the great success stories of modern medicine. But there is one crucial factor that determines how successful those treatments can be. Timing the earlier SMA is diagnosed, the better the outcomes.
In many cases, treatment before symptoms develop can prevent irreversible damage to motor neurons and dramatically improve children's future quality of life. Earlier diagnosis can mean the difference between a child learning to walk independently or never achieving that milestone. That is why newborn screening matters. As all the honourable members who have taken part in today's debate have made so clear, this debate is about ensuring that children can benefit from treatments at the point when those treatments are most effective. It is about giving families the opportunity that comes with early intervention, and it is about ensuring that where a child is born does not determine whether they have access to life changing care.
That is why there is an understandable concern about the current rollout of the in-service evaluation for SMA screening. The principle behind the evaluation is sensible gathering evidence and ensuring the NHS is prepared for wider implementation are important objectives. However, the rollout to date has been inconsistent and incomplete. Some parts of the country have been included, while others have, we have heard, have not. Families living in areas such as Oxfordshire currently have no access at all. My hon. Friend the member for Henley and Thame has been campaigning tirelessly on behalf of constituents affected by this issue and in response to a parliamentary question he submitted, it was confirmed that the current in-service evaluation will offer screening to around 400,000 babies.
By comparison, a national screening programme would cover approximately 650,000 babies every year. In other words, under the current arrangements, around one third of babies born each year will not be covered by the evaluation. That inevitably raises questions not only those made by my hon. Friend the member for Twickenham, who rightly said that rare conditions should cast the widest net. Possibly, but also why access screening should depend on geography. Why should one family benefit from early detection, while another family living elsewhere does not?And if the evidence increasingly points to the importance of early diagnosis, how can we possibly justify such uneven access?Too often in our NHS, patients and families face postcode lotteries, whether it is access to dentists, GPS, mental health services or specialist treatment, geography can end up determining outcomes.
The government and NHS England have acknowledged concerns about the current rollout. We welcome indications that NHS England is considering whether implementation can move faster, and whether the evaluation could potentially be extended more widely. That is encouraging, but families and clinicians need greater certainty. At present, there is a lack of clarity about how long the evaluation will run, when additional sites may be added, and when a final decision on a national screening programme can be expected. Those are reasonable questions and people deserve those answers.
The minister may point to the need for robust evidence before national implementation. Of course, evidence matters. Of course, changes to screening programmes must be safe, effective and carefully planned. But if the stated purpose of the in-service evaluation is to gather evidence, surely there is a strong case for gathering that evidence from as broad and as representative a population as possible. A wider rollout would not only improve equity of access, it would also strengthen the evidence base on which future decisions will be made.
I will give way.
19:03
Speaker 33
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Speaker 33
I had a couple. of constituents with direct experience of SMA. Get in touch with me. I think the thing that they identified as being most difficult about the current arrangements with the EIS is the lack of detail about how long it will take. And so I wonder whether she would agree with me that if the minister could provide a level of clarity on the length of time that that would run, that might then give us the sense that there is forward momentum on this issue.
19:03
Speaker 35
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Speaker 35
I thank the honourable member for his intervention, and, of course, he makes a good point. It is often the uncertainty and the unknown length of time that people are in limbo. That does matter, and I hope that the Minister can address the honourable member's question in her closing remarks. So, in conclusion, the story of SMA over recent years is ultimately one of hope. Medical science has transformed what was once considered an overwhelmingly bleak diagnosis. Children who would previously have had very limited prospects now have opportunities that simply did not exist a generation ago.
But those opportunities depend on timely diagnosis. The treatments exist, the evidence is growing, the need is clear. The challenge now is to ensure that every child has the same chance to benefit from those advances, regardless of where they happen to be born. Families affected by SMA deserve urgency. They deserve clarity, and above all, they deserve a system that acts as quickly as science now allows. I look forward to hearing the minister's response.
But those opportunities depend on timely diagnosis. The treatments exist, the evidence is growing, the need is clear. The challenge now is to ensure that every child has the same chance to benefit from those advances, regardless of where they happen to be born. Families affected by SMA deserve urgency. They deserve clarity, and above all, they deserve a system that acts as quickly as science now allows. I look forward to hearing the minister's response.
19:05
19:05
19:05
Speaker 7
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Speaker 7
Very much indeed, Mr. Mendell, and it's a pleasure to serve under your chairmanship this evening. And can I also thank the honourable member for Sunderland Central for opening this important debate today. On behalf of the Petitions Committee. And I think this debate is one of the examples that shows Parliament at its very best. Frankly, I'd also like to acknowledge Jesy Nelson and her tireless efforts to raise awareness of spinal muscular atrophy following the diagnosis of her twin daughters, with the condition now, Little Mix have a long have long used their platform to support a wide range of charitable causes and I would also like to express my sincere thanks for their continued support in doing so.
But to open up so deeply on something so deeply personal and goes that step further. And I also want to pay tribute to all the other families that have done the same, to so many, to so many members of Parliament. I've often spoken about my time working in children's hospices, and actually it was always the family's stories that really made the compelling cases for extra support that was needed. And I'd also like to acknowledge the work of Spinal Muscular Atrophy UK, whose dedication to supporting individuals and families affected by SMA continues to make a meaningful difference in countless lives.
We are so lucky in this country that we have so many wonderful charities that help families through very difficult times. Now, as we've heard, SMA is a progressive condition that causes muscle wasting and weakness. It is most awful condition which is not reversible with treatment. And as we've heard, there are several types of SMA, SMA, type one, which my honourable friend talked about with Harvey, is a severe form which develops between birth and six months of age without intervention, life expectancy is often less than two years.
Type two develops between 6 and 18 months of age, and children usually cannot walk unaided and may suffer respiratory complications into adolescence and type three develops after 18 months of age, individuals can usually walk independently, although this may become progressively more difficult over time.
But to open up so deeply on something so deeply personal and goes that step further. And I also want to pay tribute to all the other families that have done the same, to so many, to so many members of Parliament. I've often spoken about my time working in children's hospices, and actually it was always the family's stories that really made the compelling cases for extra support that was needed. And I'd also like to acknowledge the work of Spinal Muscular Atrophy UK, whose dedication to supporting individuals and families affected by SMA continues to make a meaningful difference in countless lives.
We are so lucky in this country that we have so many wonderful charities that help families through very difficult times. Now, as we've heard, SMA is a progressive condition that causes muscle wasting and weakness. It is most awful condition which is not reversible with treatment. And as we've heard, there are several types of SMA, SMA, type one, which my honourable friend talked about with Harvey, is a severe form which develops between birth and six months of age without intervention, life expectancy is often less than two years.
Type two develops between 6 and 18 months of age, and children usually cannot walk unaided and may suffer respiratory complications into adolescence and type three develops after 18 months of age, individuals can usually walk independently, although this may become progressively more difficult over time.
19:07
Speaker 36
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Speaker 36
There were no effective drugs available on the NHS to treat this condition. However, over the last seven years, some treatments have become available that can stop SMA in its tracks. Three transformative treatments which have become available on the NHS, one administered via lumbar puncture every months, another one gene editing infusion. And finally one which patients must take orally for the whole of their life. There is encouraging evidence that these treatments really are helping. Now, as we've heard, SMA cannot be reversed, but NHS data from 2023 showed children with SM a one the most severe form of the condition, are now surviving for longer.
Now, for families affected by an A diagnosis time is everything. So this is a really important start. As I said, I worked in children's hospices and I saw so many families going through incredibly difficult times. And as the honourable lady mentioned, it's not just caring for the child. There is the impact on relationships. There's the impact on the family finances. There's even impact on sleep. I remember one father saying to me, if he got up eight times in the night, he'd considered he'd had a good night's sleep and.
We had a saying in the children's hospices that whilst we can't add days to their lives, we can add life to their days. But here we can literally add days to their life, and I think we really should do so. So can I. Can the minister tell us?And I have to say, I agree with my hon. Friend. She is a very diligent minister and who clearly cares?But could she tell us how many babies and children are currently receiving those drugs?I mentioned from the NHS?And will data continue to be collected to give us fresh insights into the effectiveness of those drugs over a period of time?And whilst the damage inflicted by SMA is irreversible, if treatment is given before symptoms begin, this damage can be prevented and screening can therefore be an absolute lifeline for babies and families.
If SMA is caught early, that is why we absolutely welcome the UK National Screening Committee's recommendation to introduce in-service evaluation, which will see newborn screening for SMA to be trialled in the UK, and for the role that the former Secretary of State played in all of that. This is a positive step forward, but I want to add my voice to the other comments that have been made by members today, and to ask the minister some questions on points of clarification. Is recommended by the National Screening Committee will evaluate newborn screening for SMA for some newborns in England commencing in October 2026.
However, as we've heard, reports suggest that around one third of newborns will not be included initially. So can the minister explain the logic behind those?The choices that they've made?The seven NHS newborn screening laboratories in England that will be undertaking screening are, as I understand it, Birmingham, Great Ormond Street, Manchester, Newcastle, Sheffield, South East Thames and South West Thames. Now, government statistics do not suggest that babies born in these regions are more likely to have SMA. There appears to be no correlation at all between instances of SMA and the location of the centres chosen to screen newborns for the condition.
I could also find no correlation with the efficiency of delivery of other screening programmes, so it does beg the question what is the rationale for choosing just these centres, and why have others not been chosen?A baby born today who is screened and treated straight away, is likely to be walking at three years old, one born in a non screened area who is treated only when they become symptomatic, is very unlikely to be walking and may not even be with us for very long. NHS England is responsible for organising this screening, but we know that government is going through at the moment the reorganisation and there is the reorganisation of the icbs.
So I just wanted to check what assessment the Minister has made of the impact that these restructuring may have on the capacity to deliver this screening. I think it's an important point we need to bear in mind. There are also other conditions which are also excluded from newborn screening, MLD being one of them. I met a mother who's been campaigning hard on this and other campaigners. So are these conditions and others also going to be included in newborn screening in the UK?Because surely if we can help, then we should do so because the as I say, the impact is really difficult for those children and their families.
Early intervention is something I'm a huge fan of, and if we can do something about it early on, and I can't remember which honourable member said it. But even if we just looked at the. Through the hard lens of finances and public money, we would know that we would be saving a huge amount of money over over the years. So in summary, chair, it is desperately sad to see babies and their families affected by SMA. I hope that the Minister is able to provide some reassurance to those families that the forthcoming screening, that they have long been fighting for will be fair, will be effective and accessible to all newborns in the UK.
Because, as I mentioned, those families that I used to work with in children's hospices would often talk about when their child was born or diagnosed with whatever condition it may be that their hopes and dreams for their child had changed. When the baby was first born, they thought about the first day at nursery, the first day at primary school, secondary school, doing exams, going on to get married, have grandchildren and so on. Suddenly those dreams had to change because their life was going to be different. This way.
If we do this screening for some of those families, they can keep to their original dreams and we can add days to the lives of those children.
Now, for families affected by an A diagnosis time is everything. So this is a really important start. As I said, I worked in children's hospices and I saw so many families going through incredibly difficult times. And as the honourable lady mentioned, it's not just caring for the child. There is the impact on relationships. There's the impact on the family finances. There's even impact on sleep. I remember one father saying to me, if he got up eight times in the night, he'd considered he'd had a good night's sleep and.
We had a saying in the children's hospices that whilst we can't add days to their lives, we can add life to their days. But here we can literally add days to their life, and I think we really should do so. So can I. Can the minister tell us?And I have to say, I agree with my hon. Friend. She is a very diligent minister and who clearly cares?But could she tell us how many babies and children are currently receiving those drugs?I mentioned from the NHS?And will data continue to be collected to give us fresh insights into the effectiveness of those drugs over a period of time?And whilst the damage inflicted by SMA is irreversible, if treatment is given before symptoms begin, this damage can be prevented and screening can therefore be an absolute lifeline for babies and families.
If SMA is caught early, that is why we absolutely welcome the UK National Screening Committee's recommendation to introduce in-service evaluation, which will see newborn screening for SMA to be trialled in the UK, and for the role that the former Secretary of State played in all of that. This is a positive step forward, but I want to add my voice to the other comments that have been made by members today, and to ask the minister some questions on points of clarification. Is recommended by the National Screening Committee will evaluate newborn screening for SMA for some newborns in England commencing in October 2026.
However, as we've heard, reports suggest that around one third of newborns will not be included initially. So can the minister explain the logic behind those?The choices that they've made?The seven NHS newborn screening laboratories in England that will be undertaking screening are, as I understand it, Birmingham, Great Ormond Street, Manchester, Newcastle, Sheffield, South East Thames and South West Thames. Now, government statistics do not suggest that babies born in these regions are more likely to have SMA. There appears to be no correlation at all between instances of SMA and the location of the centres chosen to screen newborns for the condition.
I could also find no correlation with the efficiency of delivery of other screening programmes, so it does beg the question what is the rationale for choosing just these centres, and why have others not been chosen?A baby born today who is screened and treated straight away, is likely to be walking at three years old, one born in a non screened area who is treated only when they become symptomatic, is very unlikely to be walking and may not even be with us for very long. NHS England is responsible for organising this screening, but we know that government is going through at the moment the reorganisation and there is the reorganisation of the icbs.
So I just wanted to check what assessment the Minister has made of the impact that these restructuring may have on the capacity to deliver this screening. I think it's an important point we need to bear in mind. There are also other conditions which are also excluded from newborn screening, MLD being one of them. I met a mother who's been campaigning hard on this and other campaigners. So are these conditions and others also going to be included in newborn screening in the UK?Because surely if we can help, then we should do so because the as I say, the impact is really difficult for those children and their families.
Early intervention is something I'm a huge fan of, and if we can do something about it early on, and I can't remember which honourable member said it. But even if we just looked at the. Through the hard lens of finances and public money, we would know that we would be saving a huge amount of money over over the years. So in summary, chair, it is desperately sad to see babies and their families affected by SMA. I hope that the Minister is able to provide some reassurance to those families that the forthcoming screening, that they have long been fighting for will be fair, will be effective and accessible to all newborns in the UK.
Because, as I mentioned, those families that I used to work with in children's hospices would often talk about when their child was born or diagnosed with whatever condition it may be that their hopes and dreams for their child had changed. When the baby was first born, they thought about the first day at nursery, the first day at primary school, secondary school, doing exams, going on to get married, have grandchildren and so on. Suddenly those dreams had to change because their life was going to be different. This way.
If we do this screening for some of those families, they can keep to their original dreams and we can add days to the lives of those children.
19:14
19:14
19:14
19:14
Speaker 37
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Speaker 37
Mr. Mundell. It's a pleasure to serve under your chairmanship today. And, um, can I start by thanking my honourable friend, the member for um Sunderland Central and my Sunderland neighbour, no less. Um for opening the debate today on behalf of the petition committee. Um it is indeed very heartening to see so many members here today. And um also so many families who have joined us in the public gallery, um all united by a shared concern for children and families affected by spinal muscular atrophy.
SM, as we've heard, is a very cruel and devastating condition. It can steal from a family the carefree future they had imagined for their child. It can take away a child's mobility, and far too often it can take away a child's life far too soon. And I pay tribute to the courage of the children living with SM to the strength of their families, and to the tireless work of campaigners who have ensured that their voices are heard. Their message to us is clear.
Where there is a chance to identify babies earlier and where treatment may have its greatest effect, we must pursue that chance with urgency, care and resolve. I would like in particular to thank Jessie Nelson, who is with us in the gallery today. Um, you are very welcome and you are all so, so brave sharing your experience of this condition with your twins ocean and story. Um, you have given a public voice to so many, to all those going through a similar experience. And this petition has rightly gained significant support.
As we've heard, 150 000 signatures in such a short space of time. Um, and I'm so pleased that we can take the time today to have this debate and raise awareness of SM. I can assure you all that this conversation will not stop today. I will continue to listen to the voices of those speaking for children with SM and tomorrow, for example, I am due to meet with the members of Muscular Dystrophy UK to continue this very conversation. And I know that many families and advocates feel that the government has moved too slowly towards a decision on screening for SM, and I understand that frustration.
But decisions about national screening programmes must be made with great care, and we must be confident that screening will do more good than harm and that it can be delivered safely and fairly, and that we are making the best possible use of NHS resources for the babies and families who depend on them. There remain many unanswered questions about the benefits and practical delivery of screening for SM, and those questions matter because the answer we seek must be robust enough to support a lasting national programme. We were pleased that earlier this year, the National Institute for Health and Care Excellence, Nice published final guidance, accepting both new nursing and research.
As. Payments that could be routinely offered for SM to patients where gene therapy has not worked, and the finding that these treatments can improve survival rates and slow the progression of disease is welcome and significant. And for families living with SM even slowing that progression can mean more time, more independence, more moments together, and more hope. I will.
SM, as we've heard, is a very cruel and devastating condition. It can steal from a family the carefree future they had imagined for their child. It can take away a child's mobility, and far too often it can take away a child's life far too soon. And I pay tribute to the courage of the children living with SM to the strength of their families, and to the tireless work of campaigners who have ensured that their voices are heard. Their message to us is clear.
Where there is a chance to identify babies earlier and where treatment may have its greatest effect, we must pursue that chance with urgency, care and resolve. I would like in particular to thank Jessie Nelson, who is with us in the gallery today. Um, you are very welcome and you are all so, so brave sharing your experience of this condition with your twins ocean and story. Um, you have given a public voice to so many, to all those going through a similar experience. And this petition has rightly gained significant support.
As we've heard, 150 000 signatures in such a short space of time. Um, and I'm so pleased that we can take the time today to have this debate and raise awareness of SM. I can assure you all that this conversation will not stop today. I will continue to listen to the voices of those speaking for children with SM and tomorrow, for example, I am due to meet with the members of Muscular Dystrophy UK to continue this very conversation. And I know that many families and advocates feel that the government has moved too slowly towards a decision on screening for SM, and I understand that frustration.
But decisions about national screening programmes must be made with great care, and we must be confident that screening will do more good than harm and that it can be delivered safely and fairly, and that we are making the best possible use of NHS resources for the babies and families who depend on them. There remain many unanswered questions about the benefits and practical delivery of screening for SM, and those questions matter because the answer we seek must be robust enough to support a lasting national programme. We were pleased that earlier this year, the National Institute for Health and Care Excellence, Nice published final guidance, accepting both new nursing and research.
As. Payments that could be routinely offered for SM to patients where gene therapy has not worked, and the finding that these treatments can improve survival rates and slow the progression of disease is welcome and significant. And for families living with SM even slowing that progression can mean more time, more independence, more moments together, and more hope. I will.
19:18
Speaker 28
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Speaker 28
She talks about, you know, screening, having to be safe and fair. And we know the benefits of screening. We've seen it. You know, the people in the gallery have articulated it so clearly. The benefits are undeniable. And therefore, is it fair that, you know, a proportion, the whole of Wales and a significant a third of England, they do not have this screening. Is that fair?I would ask the minister.
19:19
Speaker 37
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Speaker 37
And I was going to be coming to to those points around the lab. So I'll bring my answers on that forward. So, um, yourself, a number of honourable members, the member for Portsmouth North, Keith Lee and Hinckley, um, and the Shadow Minister and others have raised that very point. We know that um the trials are going to be rolled out to seven of the 13 labs. So that leaves six labs. Um, not in the trial. Now, the reason it's seven of the 13 is because this is such I'm told the reason is this is such a rare condition.
As we know, the the trial has to be broad enough to ensure a robust evidence base. And the six not included. Um, currently don't have the requisite equipment at present, and that if this changes and more labs could then therefore be included.
As we know, the the trial has to be broad enough to ensure a robust evidence base. And the six not included. Um, currently don't have the requisite equipment at present, and that if this changes and more labs could then therefore be included.
19:19
Speaker 10
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Speaker 10
For for her comments and I do respect her massively in her role, Portsmouth Hospital is part of the next generation study, so already are able to test for this condition. Therefore are in the position to roll it out. Should they have been one of those cases, or should we have rolled it out to 13?So it seems very strange that we're able to test babies in the next generation study, but we're not able to test them across the board.
19:20
Speaker 37
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Speaker 37
So I thank her for that intervention. And, um, the honourable member for Sunderland Central also mentioned the generational study. Um and I, I will take that very point away and um, look at it as well. Um, there are lots of questions around this and I have, I'm sure she is aware I will have been already preparing for this debate, asking lots of those questions, but I will take that very point, um, away and get back to her on that. So as we've heard, spinal muscular atrophy affects every part of daily life for the children and the families involved, the routines, the milestones, the plans, and the hopes that families hold for their children in any progress against it matters deeply.
At the same time, Nice has been clear that important questions remain, including around longevity and how long the benefits of these relatively new treatments may last. Those questions, alongside important issues of feasibility, must be answered before a national screening decision can be made. That is why my department has worked with the National Institute for Health and Care Research and NHS England to establish an in-service evaluation, and this evaluation will run within the routine Newborn Blood spot screening programme, and it will gather the evidence that we need help, answer the difficult questions and fill the gaps that stand between us and a confident national decision.
And, crucially, the department has worked alongside patient advocate groups including the SM Alliance and SM UK. And can I take this opportunity, Mr. Mundell, to commend both groups for their excellent support and advocacy?They help to ensure that families and families voices are not an afterthought, but that they are at the heart of decisions made. And I recognise, and we've heard it today, that many have been frustrated by the pace of planning for this large scale scientific evaluation, and I hear that frustration, I really do, but we must get this right, because only a strong evaluation will give us the answers that families deserve, and the evidence that a national program and requires, I will.
At the same time, Nice has been clear that important questions remain, including around longevity and how long the benefits of these relatively new treatments may last. Those questions, alongside important issues of feasibility, must be answered before a national screening decision can be made. That is why my department has worked with the National Institute for Health and Care Research and NHS England to establish an in-service evaluation, and this evaluation will run within the routine Newborn Blood spot screening programme, and it will gather the evidence that we need help, answer the difficult questions and fill the gaps that stand between us and a confident national decision.
And, crucially, the department has worked alongside patient advocate groups including the SM Alliance and SM UK. And can I take this opportunity, Mr. Mundell, to commend both groups for their excellent support and advocacy?They help to ensure that families and families voices are not an afterthought, but that they are at the heart of decisions made. And I recognise, and we've heard it today, that many have been frustrated by the pace of planning for this large scale scientific evaluation, and I hear that frustration, I really do, but we must get this right, because only a strong evaluation will give us the answers that families deserve, and the evidence that a national program and requires, I will.
19:22
19:22
19:22
19:23
19:23
Speaker 37
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Speaker 37
Again, I have heard her. Um her remarks. It is not falling on deaf ears. I'm sure she is aware. Um, I have to say, the previous Secretary of State met with Jesy Nelson. Um, I know it had a massive impact on him. Um along with Giles Lomax from SM UK and they, I know they spoke at length about what is needed and he listened and we acted. And that is why I was very happy to announce just last month that the planned start date of January 27th would be brought forward by three months.
So the new start date for the in-service evaluation will be October 26th. And from that date, babies will begin to be screened for SM, and we will begin collecting the essential. The essential information needed to help many more children in the years ahead.
So the new start date for the in-service evaluation will be October 26th. And from that date, babies will begin to be screened for SM, and we will begin collecting the essential. The essential information needed to help many more children in the years ahead.
19:24
Speaker 27
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Speaker 27
I thank the Minister for giving way, and I am pleased that that announcement was made. But of course, as I was reiterating my speech, that doesn't include West Yorkshire or indeed my constituents across Keighley and Ilkley, the Minister made the comment that a broad brush approach was needed to gain data, and that has been rolled out to the areas that have already been announced by the government. But surely, as many members have outlined in their speeches and contributions, it would be necessary to include all areas. And therefore, can I ask the minister to either meet with me or write to me as to why or what steps can be taken to include areas like West Yorkshire and Leeds and Keighley and Ilkley as part of the screening programme.
19:24
Speaker 37
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Speaker 37
Minister and I have asked those very same questions because um it. It is such a broad. Trial that the the, the small number that isn't covered does lead you to ask those questions. Um, so I will um I have not given up asking those questions, but for today that the answer I've given already to my honourable friend is the same answer. Um, yes, I will.
19:25
19:25
Speaker 13
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Speaker 13
Sky experts wrote to The Lancet in February 2025, and the title of it was The Human Toll of Slow Decisions. And they recommended. Would the minister agree with me?They recommended that expert opinion, international evidence more thoroughly. Integration should be more thoroughly integrating the decision making process of nsc's. Furthermore, the decision of independent bodies such as the NSC. Should be subject to scrutiny by the Ministry of Health. Given the substantial effect of failing in the duty of care and on it went, taken further evidence, the evidence is there.
The experience is there, and we are lagging behind and we stop. Must. I hope the Minister agrees with me. Stop taking a conservative approach to this. Children's lives and families lives are at risk and it's got to stop.
The experience is there, and we are lagging behind and we stop. Must. I hope the Minister agrees with me. Stop taking a conservative approach to this. Children's lives and families lives are at risk and it's got to stop.
19:26
19:26
Speaker 37
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Speaker 37
Um, I thank my honourable friend for his passionate intervention. And I say again, um, it is not falling on deaf ears. Um, the speeding up of the process. Um the honourable member for Milton and Cistern, um also said what steps can be taken to speed up the process and um. We will be working um at pace and again it is something that I will be paying very close personal attention to. Um, I need to, uh, refer to a few other comments from honourable members that I haven't touched on yet.
The honourable member who opened the debate for Sunderland Central asked me about, um, the. The on screen community being used as a control or a comparison group. And I want to be very clear that those not included in the trial are not being used as a control or comparison group. Labs taken part in the study start to screen member newborns for SM in phases and the Labs act is the control before they start to screen. Um. My hon.
Friend the member for Blaydon and Consett said, when will, um, the the coverage reach the whole of England?So again, this is about the six labs not being covered. I do know the Secretary of State is actively considering this. That's why I said we are listening and we are working at pace. My hon. Friend the member for Newport West and, um, is is. Yeah. Um, asked have you spoken to Wales?Well good job they don't send me to speak to Wales because I can't pronounce the um all the names, but we um we do work in close collaboration with devolved governments and they were all included in discussions around setting up the I s um the honourable member who speaks for the shadow Secretary of State, um asked a number of detailed questions and I will endeavour to write to him on those points.
But we have chosen areas, um with labs with the equipment needed to do the analysis, which is why I will particularly write to the honourable member for Portsmouth North with regard to her point about the generational um, study. So we need to. Move forward with compassion. Um, and this is what we are going to do for families and also with rigour in the evidence and with determination to give every child the best possible start in life. And can I thank all honourable members for their excellent speeches today and for the challenge around the pace and the coverage of the clinical trial.
I hear you, I hear you all and I feel your pain deeply. And believe me when I say I have asked all these questions. As I've said myself whilst preparing for this debate, and I commit to you all today that I will continue to ask these questions on your behalf and where we can go further and faster, safely. I will push for that to be the case. This debate has played a very important part in that push. Can I thank Jessie, all petitioners, all honourable members, for ensuring that this debate is taking place today?Thank you.
The honourable member who opened the debate for Sunderland Central asked me about, um, the. The on screen community being used as a control or a comparison group. And I want to be very clear that those not included in the trial are not being used as a control or comparison group. Labs taken part in the study start to screen member newborns for SM in phases and the Labs act is the control before they start to screen. Um. My hon.
Friend the member for Blaydon and Consett said, when will, um, the the coverage reach the whole of England?So again, this is about the six labs not being covered. I do know the Secretary of State is actively considering this. That's why I said we are listening and we are working at pace. My hon. Friend the member for Newport West and, um, is is. Yeah. Um, asked have you spoken to Wales?Well good job they don't send me to speak to Wales because I can't pronounce the um all the names, but we um we do work in close collaboration with devolved governments and they were all included in discussions around setting up the I s um the honourable member who speaks for the shadow Secretary of State, um asked a number of detailed questions and I will endeavour to write to him on those points.
But we have chosen areas, um with labs with the equipment needed to do the analysis, which is why I will particularly write to the honourable member for Portsmouth North with regard to her point about the generational um, study. So we need to. Move forward with compassion. Um, and this is what we are going to do for families and also with rigour in the evidence and with determination to give every child the best possible start in life. And can I thank all honourable members for their excellent speeches today and for the challenge around the pace and the coverage of the clinical trial.
I hear you, I hear you all and I feel your pain deeply. And believe me when I say I have asked all these questions. As I've said myself whilst preparing for this debate, and I commit to you all today that I will continue to ask these questions on your behalf and where we can go further and faster, safely. I will push for that to be the case. This debate has played a very important part in that push. Can I thank Jessie, all petitioners, all honourable members, for ensuring that this debate is taking place today?Thank you.
19:29
19:29
Speaker 23
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Speaker 23
I thank the Minister for her remarks. I know, as others have said, she's a diligent minister, and I and I know she'll be pushing this carefully within department. I would ask if she might consider meeting with me and Jessie and SM UK following this, after she's had a chance to push some of those points. I thank all members for their contribution today, but most of all, can I thank Jessie and for bringing this petition alive to telling the story of her twin girls for being so clear, rightly challenging us that there shouldn't be a postcode lottery in the UK.
The UK should have screening provision as good as anyone else in the world. I beg to move. Mr. McDonald.
The UK should have screening provision as good as anyone else in the world. I beg to move. Mr. McDonald.