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Thursday 11th June 2026
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13:30
Speaker 1
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Speaker 1
We begin with the Select committee statement. Mr. Angus MacDonald will speak on the publication of the first report of the Scottish Affairs Committee, Clean Power, by 2030. A fair deal for Scotland. HC164 for up to ten minutes, during which no interventions may be taken. At the conclusion of his statement, I will call members to put questions on the subject of the statement and call Mr. Angus MacDonald to respond to these. In turn, questions should be brief and members may only speak.
Only ask one question each. I call Mr. Angus MacDonald on behalf of the Scottish Affairs Committee.
Only ask one question each. I call Mr. Angus MacDonald on behalf of the Scottish Affairs Committee.
13:30
Speaker 2
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Speaker 2
Thank you. And it's a privilege to serve under your under your chairship, Miss Barker. I'm grateful to the Backbench Business Committee for affording me the opportunity to make a statement on the publication of the Scottish Affairs Committee's first report of the session. It's on the government's clean power by 2030 mission, and it's a pleasure to speak on behalf of the committee this afternoon. This is the committee's second report of our inquiry into GB energy and the net zero transition. We launched this inquiry in November 2024, and it's been our longest running piece of work to date.
More than 50 pieces of written evidence and held 11 oral evidence sessions and carried out numerous visits both in Scotland and internationally. And I would like to take this opportunity to thank all the stakeholders who engage with this inquiry. In autumn of last year, we published an interim report for the inquiry on the future of North Sea oil and gas, and I take this opportunity to commend that report to all honourable Members of Parliament. Turning to the report before us today, our second and final report for this inquiry explores a wide range of issues.
We cover the achievability of the Clean Power by 2030 mission. The role of GB energy in delivering that. The urgent need for grid upgrades and the community ownership of clean power. However, in my brief remarks this afternoon, I would like to focus on the issue of community benefits. Community benefits are key to ensuring the fairness of the government's Clean Power mission. For the communities of the Highlands and Islands, many of whom I represent in my constituency of Inverness, Skye and Wester Ross.
Now it was declared that Scotland had the potential to become the Saudi Arabia of renewables, and indeed. There has been a massive investment in onshore wind. However, these wind farm developments are seldom owned locally. They offer few local jobs and in 2024, only £7 million of community benefit was generated in the Highlands and less than £30 million across Scotland from £1 billion industry. A disappointing outcome from what was a potentially transforming opportunity. Now, throughout our inquiry, we had a clear consensus that the communities in Scotland which shoulder the greatest impacts of the energy transition by hosting renewable energy infrastructure, must also share in its benefits.
As one of our expert witnesses put it, Highland communities see that the turbines are generating lots of revenue for somebody, but not for them. Is an acute problem of fairness. The communities across Scotland that host industrial scale renewable infrastructure in their backyards are the very same communities who are also paying amongst the highest prices for energy. While fuel poverty rates across the UK cannot be directly compared. It is also clear that these same communities are also enduring amongst the highest levels of fuel poverty in the UK.
Many will be amongst the 34% of Scottish households which are classified as fuel poor, while inhabitants are looking at massive wind turbines generating renewable electricity just nearby. That cannot be just Miss Barker. As our report highlights, this disconnect is a key driver of the sense of unfairness felt by communities across rural Scotland. It is for that reason that our report welcomes the UK government's commitment to introduce a mandatory community benefit scheme for new generation infrastructure. Expected to be introduced by the end of 2027 at the earliest.
It could be key to ensuring Scotland's rural communities are adequately compensated for the disadvantages of enabling the whole of the UK to meet the government's Clean Power mission. However, this raises the thorny issue of what fair compensation looks like. Report highlights, the Scottish Government was widely regarded as a leader in this area. In 2015 it introduced voluntary community benefits guidance for onshore renewable developers that. Recommended community benefits of £5,000 per megawatt. With inflationary increases. The Scottish Government has recently proposed increasing this to £6,000.
However, in its policy paper paper on how the mandatory scheme will work, the UK government's proposed a benchmark contribution of only £5,000 per megawatt for its mandatory scheme. Our report finds that this £5,000 per megawatt is insufficient and does not reflect fair compensation for rural Scotland. Pounds may have been seen as an appropriate amount in 2015, when the Scottish Government adopted it, but it's now worth around 40% less in real terms. It is clear from our report that the UK government must be bolder.
The committee recommends that a figure in the region of 10,000 to £12,000 per megawatt would be more appropriate, and the report also calls on the government to give careful consideration to the Highland Council's position at the upper end of this scale, 12,500 is a fair figure. This proposal from the Highland Council reflects its first hand experience of supporting communities bearing the brunt of clean energy development. Whatever figure the. Government adopts Miss Barker. The committee's report also highlights it as equally important that a mechanism to maintain this value over time is included.
Otherwise, Scotland's communities will eventually find themselves short as the real term value of the figure is eroded. While financial payments will be an essential part of a fair deal for Scotland, it is not the whole story. Our report makes it clear that meaningful community benefit extends beyond financial payments and that housing availability, access to skills training and the creation of long term local jobs are just as important. If delivered successfully, the influx of vast amounts of renewable access to skills training, and the creation of long term local jobs are just as community benefit extends beyond financial payments, and that housing availability is important.
If delivered successfully, the influx of vast amounts of renewable energy could provide an opportunity to leave a transformative legacy of community. Benefit extends beyond financial payments, and that housing availability, access to skills training and the creation of long term local jobs are just as important. If delivered successfully, the influx of vast amounts of renewable energy could provide an opportunity to leave a transformative legacy of housing skills and quality employment. This would be especially valuable for communities in rural, remote Scotland, which has seen little private or public sector investment.
We call on the government to seize this opportunity and ensure its mandatory community benefit scheme is sufficiently significant to reflect the needs and priorities of Scotland's rural communities. We highlight one specific way in which this can be achieved, the report recommends that the government scheme should include a requirement that energy companies building projects in rural areas should construct legacy worker accommodation to a standard suitable for permanent community housing, rather than temporary modular buildings. This would go some way to addressing the acute housing shortage in Highlands. Which requires an extra 24,000 homes to meet demand over the next decade, according to Highland Council.
And with that, Miss Barker, I shall conclude my statement. The Scottish Affairs Committee looks forward to the government's response, which I hope will reflect serious consideration of our recommendations to deliver a fair deal for rural rural communities across Scotland.
More than 50 pieces of written evidence and held 11 oral evidence sessions and carried out numerous visits both in Scotland and internationally. And I would like to take this opportunity to thank all the stakeholders who engage with this inquiry. In autumn of last year, we published an interim report for the inquiry on the future of North Sea oil and gas, and I take this opportunity to commend that report to all honourable Members of Parliament. Turning to the report before us today, our second and final report for this inquiry explores a wide range of issues.
We cover the achievability of the Clean Power by 2030 mission. The role of GB energy in delivering that. The urgent need for grid upgrades and the community ownership of clean power. However, in my brief remarks this afternoon, I would like to focus on the issue of community benefits. Community benefits are key to ensuring the fairness of the government's Clean Power mission. For the communities of the Highlands and Islands, many of whom I represent in my constituency of Inverness, Skye and Wester Ross.
Now it was declared that Scotland had the potential to become the Saudi Arabia of renewables, and indeed. There has been a massive investment in onshore wind. However, these wind farm developments are seldom owned locally. They offer few local jobs and in 2024, only £7 million of community benefit was generated in the Highlands and less than £30 million across Scotland from £1 billion industry. A disappointing outcome from what was a potentially transforming opportunity. Now, throughout our inquiry, we had a clear consensus that the communities in Scotland which shoulder the greatest impacts of the energy transition by hosting renewable energy infrastructure, must also share in its benefits.
As one of our expert witnesses put it, Highland communities see that the turbines are generating lots of revenue for somebody, but not for them. Is an acute problem of fairness. The communities across Scotland that host industrial scale renewable infrastructure in their backyards are the very same communities who are also paying amongst the highest prices for energy. While fuel poverty rates across the UK cannot be directly compared. It is also clear that these same communities are also enduring amongst the highest levels of fuel poverty in the UK.
Many will be amongst the 34% of Scottish households which are classified as fuel poor, while inhabitants are looking at massive wind turbines generating renewable electricity just nearby. That cannot be just Miss Barker. As our report highlights, this disconnect is a key driver of the sense of unfairness felt by communities across rural Scotland. It is for that reason that our report welcomes the UK government's commitment to introduce a mandatory community benefit scheme for new generation infrastructure. Expected to be introduced by the end of 2027 at the earliest.
It could be key to ensuring Scotland's rural communities are adequately compensated for the disadvantages of enabling the whole of the UK to meet the government's Clean Power mission. However, this raises the thorny issue of what fair compensation looks like. Report highlights, the Scottish Government was widely regarded as a leader in this area. In 2015 it introduced voluntary community benefits guidance for onshore renewable developers that. Recommended community benefits of £5,000 per megawatt. With inflationary increases. The Scottish Government has recently proposed increasing this to £6,000.
However, in its policy paper paper on how the mandatory scheme will work, the UK government's proposed a benchmark contribution of only £5,000 per megawatt for its mandatory scheme. Our report finds that this £5,000 per megawatt is insufficient and does not reflect fair compensation for rural Scotland. Pounds may have been seen as an appropriate amount in 2015, when the Scottish Government adopted it, but it's now worth around 40% less in real terms. It is clear from our report that the UK government must be bolder.
The committee recommends that a figure in the region of 10,000 to £12,000 per megawatt would be more appropriate, and the report also calls on the government to give careful consideration to the Highland Council's position at the upper end of this scale, 12,500 is a fair figure. This proposal from the Highland Council reflects its first hand experience of supporting communities bearing the brunt of clean energy development. Whatever figure the. Government adopts Miss Barker. The committee's report also highlights it as equally important that a mechanism to maintain this value over time is included.
Otherwise, Scotland's communities will eventually find themselves short as the real term value of the figure is eroded. While financial payments will be an essential part of a fair deal for Scotland, it is not the whole story. Our report makes it clear that meaningful community benefit extends beyond financial payments and that housing availability, access to skills training and the creation of long term local jobs are just as important. If delivered successfully, the influx of vast amounts of renewable access to skills training, and the creation of long term local jobs are just as community benefit extends beyond financial payments, and that housing availability is important.
If delivered successfully, the influx of vast amounts of renewable energy could provide an opportunity to leave a transformative legacy of community. Benefit extends beyond financial payments, and that housing availability, access to skills training and the creation of long term local jobs are just as important. If delivered successfully, the influx of vast amounts of renewable energy could provide an opportunity to leave a transformative legacy of housing skills and quality employment. This would be especially valuable for communities in rural, remote Scotland, which has seen little private or public sector investment.
We call on the government to seize this opportunity and ensure its mandatory community benefit scheme is sufficiently significant to reflect the needs and priorities of Scotland's rural communities. We highlight one specific way in which this can be achieved, the report recommends that the government scheme should include a requirement that energy companies building projects in rural areas should construct legacy worker accommodation to a standard suitable for permanent community housing, rather than temporary modular buildings. This would go some way to addressing the acute housing shortage in Highlands. Which requires an extra 24,000 homes to meet demand over the next decade, according to Highland Council.
And with that, Miss Barker, I shall conclude my statement. The Scottish Affairs Committee looks forward to the government's response, which I hope will reflect serious consideration of our recommendations to deliver a fair deal for rural rural communities across Scotland.
13:38
Speaker 3
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Speaker 3
Thank you, Miss Barker. And I very much thank my colleague for the way in which he has presented the committee's findings and recommendations. It was a very interesting piece of work to do, but I wonder if he would agree with me that one of the issues that came up time and time again was the curtailment costs, the charges, in fact, the payments made to. Electricity producers, when turbines are not working. Does he agree with me that the changes that are being made to the grid need to happen as quickly as he possibly can, so that one of the benefits that would come from that would be that those curtailment costs would be reduced, helping bill payers across the country.
13:39
Speaker 2
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Speaker 2
Thank you. And I also would like to thank, um, um, Miss Ferguson, who was the chair of the committee and, and, and very much the driving force behind this. Um, I think the curtailment costs are um. They demonstrate quite how meagre the community benefits are because the curtailment costs, I don't have the figure to hand, but it is several hundred million pounds and that is often being paid to um. Utilities and infrastructure funds who own these, who were not local. They are not Scottish based.
They're not Highland based. So basically we're rewarding people um, for, for something they have not done to help the area. So I couldn't agree more. The transmission lines and the speed of getting them in is crucial. Thank you.
They're not Highland based. So basically we're rewarding people um, for, for something they have not done to help the area. So I couldn't agree more. The transmission lines and the speed of getting them in is crucial. Thank you.
13:40
Speaker 4
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Speaker 4
Thank you, Madam Chair. I first of all thank the chair of the Select Committee for for the report and for outlining the the factual case and to the honourable members who who commit themselves and their time and energy to helping to come forward with, with ideas. Um, first of all, there's, there's many ideas in that. And with my question to the minister, two questions. If I can ask two questions if I'm allowed to, Matt, I'll try to make it one question worth two, two issues.
Okay. Sorry about that. Apologies for being, um, being, uh, overambitious. The green energy issues. Will it be the intention of the committee to share their ideas with the the Northern Ireland Assembly, where green energy at this moment in time is not as far as advanced as it is in Scotland. One of the things that we're looking towards Scotland and Northern Ireland is the energy, uh, connection between Scotland and Northern Ireland. Was that something that the committee considered?And if not, would it be something that maybe the chair's committee would consider sometime in the future?Thank you.
Okay. Sorry about that. Apologies for being, um, being, uh, overambitious. The green energy issues. Will it be the intention of the committee to share their ideas with the the Northern Ireland Assembly, where green energy at this moment in time is not as far as advanced as it is in Scotland. One of the things that we're looking towards Scotland and Northern Ireland is the energy, uh, connection between Scotland and Northern Ireland. Was that something that the committee considered?And if not, would it be something that maybe the chair's committee would consider sometime in the future?Thank you.
13:42
13:42
13:42
Speaker 5
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Speaker 5
Thank you, Madam Chair. I was very interested in hearing the honourable member advise that the Scottish Government has proposed increasing the recommended voluntary community benefits for onshore wind projects to £6,000 per megawatt. I am very concerned that it seems like such a derisory uplift, given the fact that, as you member pointed out, that it was £5,000 in 2015 and we were 11 years on. So only at £1,000 of an uplift left campaigners and local authorities across Scotland are suggesting that the figure of 12,500 would be more appropriate.
How should the UK government respond to this?Are you suggesting intervention by the UK government with a legal mandate, perhaps introducing a fairer and more realistic community benefit figure?
How should the UK government respond to this?Are you suggesting intervention by the UK government with a legal mandate, perhaps introducing a fairer and more realistic community benefit figure?
13:43
Speaker 2
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Speaker 2
Well, firstly I can say um. That it would be very helpful if 12 years ago the then conservative government had done something in making it mandatory, which they didn't. So well done, the Scottish Government for doing it. Having said that, they should have increased it every year. Instead, they left it at that figure of £5,000. The figure of £6,000 that they come up now is is completely ridiculous because if you'd taken out that contract in 2015, that would, with inflationary increases, would now be 8500.
So why would you reduce it to 6000?They've effectively reduced the community benefit. So they have they have. Also wrote to the energy Minister in Scotland and First Minister two years ago and made my case and indeed met the energy Minister about this. And I'm afraid they have taken the easy option of making it 6000. Quite quickly.
So why would you reduce it to 6000?They've effectively reduced the community benefit. So they have they have. Also wrote to the energy Minister in Scotland and First Minister two years ago and made my case and indeed met the energy Minister about this. And I'm afraid they have taken the easy option of making it 6000. Quite quickly.
13:44
13:44
13:44
13:45
13:45
Speaker 4
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Speaker 4
Point of order. Just. Just for clarification, Madam Chair, I asked the question to the honourable Chair of the committee, but the Minister is sitting here. Could the or would the minister be able to answer the question that I asked the honourable gentleman?So, in relation to the interconnector between Scotland and Northern Ireland.
13:45
13:50
Speaker 4
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Speaker 4
I thank you, Madam Chair. Firstly, this house is considered freedom of religion or belief in Sudan. It's a real pleasure to be able to introduce this debate. It's one that I've sought for some time, Madam Chair, and it's a real pleasure to serve under your chairmanship, um, and have had a friendship for so many years in this House as well, and I appreciate that. Also a pleasure to, um, see the minister in place. Um, it wasn't who I was told uh, the other day.
Chris Elmore sorry, the member for wherever he's from told me he was doing it, but I'm happy you're doing it. By the way that. That's no in no way a disappointment. Let me tell you, I said he happened to tell me. I'll see you on Thursday, you know, there we are. And I also say a pleasure to see, uh, the the shadow minister in his place. And we spoke beforehand with a good friendship in this house and the, the shadow person, a spokesperson for the Liberal Democrat always turns up in my debates.
Uh, I'm not sure if he's made come to it or he comes because he's a deep interest and I'm going to hang on to that latter part of that, because I think that's the real reason. Knowing the person as I know. Um, things for people to be doing. And I know people are committing themselves to that. I understand, I know why they're doing that. I know some of the people who are speaking in the things for people to be doing are well aware.
The day week, they make us feel the by election will be debate in the main chamber on the legacy of Jo Cox. Were also wanting to be here. And indeed, the shadow Minister told me that. And there's others in the chamber as well who wish to participate. But I think, first of all, the backbench Business Committee for allocating the time to discuss the severe things for people to be doing, we're well aware the day week, they make us feel the by election will be on.
And I know people are committing themselves to that. I understand, I know why they're doing that. I know some of the people who are speaking in the debating chamber. On the legacy of Jo Cox were also wanting to be here, and the shadow minister told me that. And there's others in the chamber as well who wish to participate. But I think, first of all, the backbench Business Committee for allocating the time to discuss the severe violations of freedom of religion or belief in Sudan.
I know that the shadow spokesperson for the Lib Dems will bring a personal input into this debate as well. From his experience, I didn't know until just a short time ago, Madam Chair, that he was in Sudan and 2022, and I think, um, his knowledge of that time there and some of the things that have happened since, it's, uh, it burdens my soul when the, the terrible persecution and the unspeakable violence takes place against, um, my brothers and sisters in the Lord, uh, Christians and all those of other faiths because they're Muslims that haven't been outside the, the, the abuse either, and the attacks and the violence.
Um, those, uh, terrorist groups are. Committed to, to destroying Sudan. And they don't seem to worry any bit about what happens as chairman of the all party parliamentary group for international Freedom of Religion or Belief, I have watched with great concern as Sudan had to send it into the largest current humanitarian crisis on earth. And I believe that, Madam Chair. Uh, it's horrendous what's happening. The the amount of people displaced, the numbers are being murdered. Uh, the level of abuse that takes place against women and young girls.
I always those things really quite annoy me, Madam Chair, and they annoy us all. Um, but they do. I just can't quite understand why anybody wants to be so evil, wicked or depraved against women and children, really. I mean, it's inconceivable. My mind can't take it in the. Since 2020 3rd April 2023, more than 150,000 people are estimated to have been killed. Figures even go beyond that. Even even above that, in some figures and up to 15 million people have been displaced from their homes.
The famine has taken hold in the Zam Zam displacement camp, and millions more above that, 150 millions more face hunger, fear and uncertainty every day of their lives. Sudan is fourth fourth in the world wide watchlist. That's. It's like a Premier League only if you're number four in the Premier League. It's not looking good because you're there because of the atrocities of the persecution, of the human rights abuses, of the things that take place. And if your number and if you're in the top 4 or 5, you're in the worst places in the world.
That's along with North Korea. That's along with China. That's along with parts of Russia and other places as well. In February of this year, the United Nations fact Finding mission reported that the actions of the rapid support forces around El Fasher. And I think we can all remember on that particular time, there was an incredible reports filtering through of of the the murderous intent of the rapid support forces in their genocide. And many of us, uh, were, were told that the hallmarks of genocide and the evidence of genocide, particularly in the targeting of non-Arab communities, including the fur and the Zaghawa peoples.
These words should make every one of us stop and think hallmarks of genocide. Men and women and children killed. Why?Because they just happen to be Christians. They just happened to be Muslims. They just happened to be the. As far as the rapid support forces are the enemy, situation in Sudan is one of hatred, identity based violence and impunity. At its worst I've seen in my lifetime to a much lesser degree, but nonetheless in Northern Ireland.
And Madam Chair, you should be aware of this. Um um the the, uh, the hit is allowed to overcome basic humanity. I've always tried in my life to, um, be. About those things in a way we can take in what happens at the same time. Um, I try to have a look upon things in a way we need to move on and bring society. And I think we've done that in Northern Ireland, but here in Sudan, it's nowhere near, nowhere near, uh, coming to, to, to a limit.
I'm not very happy to.
Chris Elmore sorry, the member for wherever he's from told me he was doing it, but I'm happy you're doing it. By the way that. That's no in no way a disappointment. Let me tell you, I said he happened to tell me. I'll see you on Thursday, you know, there we are. And I also say a pleasure to see, uh, the the shadow minister in his place. And we spoke beforehand with a good friendship in this house and the, the shadow person, a spokesperson for the Liberal Democrat always turns up in my debates.
Uh, I'm not sure if he's made come to it or he comes because he's a deep interest and I'm going to hang on to that latter part of that, because I think that's the real reason. Knowing the person as I know. Um, things for people to be doing. And I know people are committing themselves to that. I understand, I know why they're doing that. I know some of the people who are speaking in the things for people to be doing are well aware.
The day week, they make us feel the by election will be debate in the main chamber on the legacy of Jo Cox. Were also wanting to be here. And indeed, the shadow Minister told me that. And there's others in the chamber as well who wish to participate. But I think, first of all, the backbench Business Committee for allocating the time to discuss the severe things for people to be doing, we're well aware the day week, they make us feel the by election will be on.
And I know people are committing themselves to that. I understand, I know why they're doing that. I know some of the people who are speaking in the debating chamber. On the legacy of Jo Cox were also wanting to be here, and the shadow minister told me that. And there's others in the chamber as well who wish to participate. But I think, first of all, the backbench Business Committee for allocating the time to discuss the severe violations of freedom of religion or belief in Sudan.
I know that the shadow spokesperson for the Lib Dems will bring a personal input into this debate as well. From his experience, I didn't know until just a short time ago, Madam Chair, that he was in Sudan and 2022, and I think, um, his knowledge of that time there and some of the things that have happened since, it's, uh, it burdens my soul when the, the terrible persecution and the unspeakable violence takes place against, um, my brothers and sisters in the Lord, uh, Christians and all those of other faiths because they're Muslims that haven't been outside the, the, the abuse either, and the attacks and the violence.
Um, those, uh, terrorist groups are. Committed to, to destroying Sudan. And they don't seem to worry any bit about what happens as chairman of the all party parliamentary group for international Freedom of Religion or Belief, I have watched with great concern as Sudan had to send it into the largest current humanitarian crisis on earth. And I believe that, Madam Chair. Uh, it's horrendous what's happening. The the amount of people displaced, the numbers are being murdered. Uh, the level of abuse that takes place against women and young girls.
I always those things really quite annoy me, Madam Chair, and they annoy us all. Um, but they do. I just can't quite understand why anybody wants to be so evil, wicked or depraved against women and children, really. I mean, it's inconceivable. My mind can't take it in the. Since 2020 3rd April 2023, more than 150,000 people are estimated to have been killed. Figures even go beyond that. Even even above that, in some figures and up to 15 million people have been displaced from their homes.
The famine has taken hold in the Zam Zam displacement camp, and millions more above that, 150 millions more face hunger, fear and uncertainty every day of their lives. Sudan is fourth fourth in the world wide watchlist. That's. It's like a Premier League only if you're number four in the Premier League. It's not looking good because you're there because of the atrocities of the persecution, of the human rights abuses, of the things that take place. And if your number and if you're in the top 4 or 5, you're in the worst places in the world.
That's along with North Korea. That's along with China. That's along with parts of Russia and other places as well. In February of this year, the United Nations fact Finding mission reported that the actions of the rapid support forces around El Fasher. And I think we can all remember on that particular time, there was an incredible reports filtering through of of the the murderous intent of the rapid support forces in their genocide. And many of us, uh, were, were told that the hallmarks of genocide and the evidence of genocide, particularly in the targeting of non-Arab communities, including the fur and the Zaghawa peoples.
These words should make every one of us stop and think hallmarks of genocide. Men and women and children killed. Why?Because they just happen to be Christians. They just happened to be Muslims. They just happened to be the. As far as the rapid support forces are the enemy, situation in Sudan is one of hatred, identity based violence and impunity. At its worst I've seen in my lifetime to a much lesser degree, but nonetheless in Northern Ireland.
And Madam Chair, you should be aware of this. Um um the the, uh, the hit is allowed to overcome basic humanity. I've always tried in my life to, um, be. About those things in a way we can take in what happens at the same time. Um, I try to have a look upon things in a way we need to move on and bring society. And I think we've done that in Northern Ireland, but here in Sudan, it's nowhere near, nowhere near, uh, coming to, to, to a limit.
I'm not very happy to.
13:57
Speaker 7
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Speaker 7
I'm incredibly grateful to the honourable gentleman for giving way. He's been a powerful advocate for religious freedom right across the world. And his speech today just underlines that even further still. And like him, I did look at the Open Doors World watch list, which said that Sudan is now fourth in the world, the fourth worst place in the world to be a Christian. And that's not just because of the war, but that's because churches are being burned down. That's because Christians are being forcibly converted.
In addition to the mosques that are being attacked and the ongoing humanitarian catastrophes taking place right across that country. Now, I absolutely welcome the £146 million that the UK government has released in humanitarian aid. But does he agree with me that the only way we're going to get a lasting solution to this crisis is if the UK uses every lever at its disposal, including its role as official penholder on Sudan, on the UN Security Council to broker a cease fire.
In addition to the mosques that are being attacked and the ongoing humanitarian catastrophes taking place right across that country. Now, I absolutely welcome the £146 million that the UK government has released in humanitarian aid. But does he agree with me that the only way we're going to get a lasting solution to this crisis is if the UK uses every lever at its disposal, including its role as official penholder on Sudan, on the UN Security Council to broker a cease fire.
13:58
Speaker 4
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Speaker 4
I thank the honourable gentleman for for that intervention and thank him for his for his word. We'd spoken beforehand and we're listening to it in the chamber this morning just to go over what the government was going to refer to. There's a key role. We're very fortunate to have the minister in this place. We're very fortunate that the government has also given that £146 million of humanitarian aid. Um, I suspect that probably doesn't get to where maybe it should be.
It's not the government's fault. It's not the minister's fault, but there is a commitment from this government and from our minister and our government, uh, to, to do that. And I'm going to refer to, to some of the things that referred to in in his intervention. I say this no cause, no grievance and no political objective can ever justify the targeting of civilians, the destruction of places of worship or the abuse of women and children. Um, as I said earlier, it's inconceivable to try and understand the depravity of those carrying out the vile, vile, vile things against innocent people.
Dark places that should be treated as sanctuaries are being treated with contempt, with, with disregard. In June 2025, again, I, I quote some of the ones the rapid support forces bombed the Sudanese Episcopal Church. The African Inland Church, and the Roman Catholic Church in Al-fashir. Again, the. The father, Luca Jumu, a devoted parish priest, later died from his injuries. He was not from Al-fashir, but his duties as a pastor, as a priest, as one who reaches out to.
To help people was to stay with those and remain there during the siege, serving a community that was predominantly Muslim. That's Christianity at work. Madam chair, I'd say the word that I'd love to see where we can all have a different religion, if that's the way it is, but we can all stand up for each other, and that's what we should do. Uh, and I think. Further, um, look, I believe did that. And the most compassionate way and give his life ultimately for that belief that he had.
I think that speaks powerfully, powerfully of his faith, of his courage and his love for the people that he served and loved and died for. Ultimately this. Regard for human life, of course, extends across all faiths. In September 2025, the rapid support forces attacked a mosque near Abdul Souq Camp during dawn prayers, killing more than 70 people at prayer at. Peace in touch with their God and they were murdered in Khartoum. The Pentecostal church premises and El Hadji l Shigella were destroyed by extremists and members of the Sudanese Armed forces.
Some of these words. By the way, Madam Chair, for someone with me with an Ulster Scots accent that probably probably destroyed the words, uh, with my accent, never mind with my my interpretation of them. But I tried to to put on record, uh, my concern for all those places, which I probably never see, uh, people who I probably never meet in this world, but hopefully we'll meet them in the next. For those who flee, the nightmare often continues. There are reports of Christians, my brothers and sisters who fled rapid support forces, controlled areas, being arrested and detained in Sudanese armed Forces controlled areas.
Disregard for human life seems to be not just with the terrorist groups, but sometimes with government troops as well. In October 2024, military intelligence officials in Shendi reportedly arrested 26 Christian men from the Sudanese Church of Christ, accusing them of affiliation with the Rapid support forces. These accusations appear, Madam chair, to have not been based upon any evidence because there isn't any evidence to prove it, but on suspicion, on authenticity and where they had fled from. They just happen to come from an area where the the the rapid support forces had chased them from.
And then they said they were from that group. It really is quite hard to believe. There are also wider concerns about what has been called the Strange Faces policy, which is rather hard to understand, under which people perceived, perceived, not perceived to belong to communities linked with one side or the other, have been harassed, detained or accused of criminal offences. Even though there is little or indeed no evidence to prove any of that that has affected Christian communities, too, many of whom come from the Nuba Mountains and are of African ethnicity.
So we must also, I believe, confront the horrific reality of conflict related sexual violence. Um, it is, um it is, it is inconceivable. It is so wicked, depraved and evil, uh, that anyone should take advantage of a, of a, a woman or a young girl, uh, just because they are, um, females. They've been raped, they've been abducted, they've been taken into sexual slavery. Um, and. What about a young, a woman who's married to her husband and she's some young daughters and they're taken away and they're taken into sexual slavery, uh, against their will, brought up in a good home and deprived, deprived.
And what has happened against them. There's also reports of men experiencing sexual violence in detention as well. So there are people of depravity in control, in jails and in positions of power who carry out their most depraved acts upon those who they have a responsibility to look after. Survivors need the medical care. Support and access to justice. So I have 3 or 4 asks for the minister, and I must say I really is a joy to see the minister in this place.
Ministers, um, use of words and his tone, I think, Madam Chair, I always. No matter how dark the the the the statement may be in the chamber. And sometimes they're pretty dark. Uh, the minister always happens to develop a tone, uh, which calms us, perhaps, uh, it calms me. I know that. And and that's important that that we can relate to a minister who I believe has, uh, the heart, the heart for the stories that we're telling. We thank him for that.
So, uh, in relation to the resources that are being made available for the work, not only inside Sudan, but also for refugees in neighbouring countries with the honourable gentleman intervention referred to the £146 million humanitarian aid. That's some of the things we're doing. But maybe for those who need medical help, those who are facing the trauma of, of, of depravity against them, those young children who. Could be educated, but there aren't because there's no teachers or no schools to teach them, but also for the neighbouring countries where the refugees are fleeing as well.
The treatment of women and girls by these men is reprehensible. And we must intervene and support those who work in this area, not simply to help those who have been affected, but to train the generation, train the generation to understand that rape and sexual violence is despicable, and the actions of the past cannot be the actions of the future. Any kingdom has, I believe a particular responsibility goes back to the gentleman's intervention. Once again, we are the pen holder on Sudan and the United Nations Security Council, and we have played a leading role on Sudan and the United Nations Human Rights Council.
And that gives us, I believe, Madam Chair, um, a. Duty to lead. Now, I don't believe for one second that the Minister isn't doing that. I don't believe for one second that the government is not doing that. But is there a better ways of doing it?Can we encourage others to perhaps take, be, be, um, on paper, a pen holder like we are in the United Kingdom and maybe there's a bigger role for, for the United States, bigger role for the rest of the countries of Europe to play those in the Western world and those who have a heart for the people and compassion for those who are under pressure.
So I would urge the minister to press for an immediate cease fire. I think the gentleman must have read my three points very, very quickly. I didn't didn't show him the speech, by the way, but he he ascertained what the issues were very, very quickly, and I congratulate him on that for safe humanitarian, humanitarian access for the protection of civilians and for the protection of churches of mosques and other places of worship. So I asked the minister in government to support the mandate of the United Nations fact finding mission on Sudan and to ensure that it's fully resourced and not watered down.
And I'm not here to criticise government for for, um, for their money that they set aside for, for um other countries across the world. And we understand the pressures of finance and reduces that, but every one of us, um, even in the chamber today and the shadow minister, um and, and the debate on the legacy of Jo Cox was referring to, to defeat, uh, and the reduction in money, but that, that soft approach is difficult. And the other one is a military, um, approach. Of course, but there are ways to do it.
So again, Minister, we'd be very, very clear and very happy to have your ideas about how they can protect the civilians, how we can protect the churches, the mosques and the place of worship, and how we can support the United Nations fact finding mission in Sudan. And whenever we have that fact finding mission with all its details, then what plan of action will we take forward to ensure that things can get better?So I also asked the government to press for the the Darfur arms embargo to be extended across the whole of Sudan and for the mandate of the International Criminal Court investigation currently focused on Darfur to be extended to the whole country.
I'm a great believer, madam chair, uh, it's a personal thing. Uh, but I believe there are many in this house with the same, uh, that, uh, people in this world may think they may get away with certain things, but there's a day coming, uh, in the next world when they'll be held accountable. But what I want in this world, Madam Chair, I want them to be accountable for their crimes, for their deprivations, for their abuse of women and children, for their murders, for their killing. I want them to be brought before an international crime court investigation.
And if the minister could give us some indication, uh, what's happening in relation to the International Criminal Court investigation, I'll be deeply indebted. There must also be accountability for those outside Sudan who are fueling the war. If other states are supplying arms funds or political cover to either side, that must be called out. And I'm going to mention, uh, one of those, uh, just shortly, United Kingdom should not be afraid to use sanctions against those who enable atrocities, whether they are inside Sudan or outside.
It doesn't matter where they are in the world. Make them accountable. And I'm quite sure that our government and our minister will make that happen. I'm going to mention the the country that that this whole time many of us feel. Is involved in this right up to their neck. And particularly concerns have been raised about the alleged role of the United Arab Emirates in supporting the rapid support forces. The United Arab Emirates has denied any wrongdoing.
You know, there's so much holier than I. I may try to be, but no, their hands are dirty and their hands are bloody. Uh, and it's time for them to be to be made accountable. The allegations that are made are serious and they simply cannot be ignored. If any external state is supplying arms funds or logistical support to those committing atrocities, it must it must be held accountable. There must be a time when the the. The United Arab Emirates, whoever, whoever is involved in these activities is made accountable.
I referred to a campaign has also been called. I make this point on the Premier League to raise concerns with Manchester City owner Sheikh Mansour, who is both the owner of the club and a senior political figure in the United Arab Emirates. Abdallah Idris, a. Of the Darfur genocide and leader of the Darfur Diaspora Association, has made the point that football is powerful and. We're going to see that in a few. I think. Is it tonight?The first match starts tonight.
We're going to see in the next fortnight three weeks of the World Cup. Football is powerful. Well here's an opportunity for the power of football to do something for the people in relation to the supply of arms funds or logistical support. And and the owner of Manchester City should do his bit as well. He has made the point that football is powerful, and with power comes moral responsibility. It's not just about playing the magnificent game. Uh, for 90 minutes or extra time, whatever it may be.
But whether in sport, diplomacy or trade, no institution should turn away from credible concerns about atrocities. And that is why accountability must not stop at Sudan's borders. If we're serious about ending this war, we must look not only at those pulling the trigger, but those supplying funding and enabling the violence. And it's time to look at those as well. Again, Minister, if you don't mind, uh, I would like some, uh, direction and listen, any discussions with the UAE?Uh, has there been any discussions with the influencer, perhaps?I'm not a supporter, not about what to support.
I support Leicester City. Uh, and we're in the first Division and if we're not careful, we might be in the second. But the thing is that I'm always in. I'm going to diversify slightly. But Coventry City, when they went down, it took them 20 years to come up. And I hope we won't take 20 years for Leicester to come back. I hope it'll be sooner than that. Uh, a lasting peace. Can only be built on justice, accountability and the protection of all Sudanese people.
Muslim, Christian, whoever. The destruction of places of worship must end. The targeting of civilians must end the abuse of women and girls must, must, must end the obstruction of aid must end. I conclude with this the people of Sudan deserve peace. They also deserve justice. They deserve protection, and they deserve the freedom to believe, to worship, and to live without fear. And we must do all within our power, all within our power, our physical, emotional, and power that we have in this country.
Um, to help those people, Sudan, to change their nation, to deliver a hope and a future to their young people. And so young people of tomorrow, as a grandfather, I often think of not just the role of my three boys, but of the six grandchildren and the place you want to leave them in. Uh, so we want to leave the same thing for their young people. And they understand that women and children are valuable to God and to us, and he cares for them as we do.
I always finish with a scripture text, Madam Chair, and you will know that in the Scripture text is Ephesians chapter six, where it tells us, having done all stand. So my my final request is that they cannot stand alone. And we must ensure. Our government stands with them and supports them in that nation, and that they. In Westminster Hall we stand. We can do no more.
It's not the government's fault. It's not the minister's fault, but there is a commitment from this government and from our minister and our government, uh, to, to do that. And I'm going to refer to, to some of the things that referred to in in his intervention. I say this no cause, no grievance and no political objective can ever justify the targeting of civilians, the destruction of places of worship or the abuse of women and children. Um, as I said earlier, it's inconceivable to try and understand the depravity of those carrying out the vile, vile, vile things against innocent people.
Dark places that should be treated as sanctuaries are being treated with contempt, with, with disregard. In June 2025, again, I, I quote some of the ones the rapid support forces bombed the Sudanese Episcopal Church. The African Inland Church, and the Roman Catholic Church in Al-fashir. Again, the. The father, Luca Jumu, a devoted parish priest, later died from his injuries. He was not from Al-fashir, but his duties as a pastor, as a priest, as one who reaches out to.
To help people was to stay with those and remain there during the siege, serving a community that was predominantly Muslim. That's Christianity at work. Madam chair, I'd say the word that I'd love to see where we can all have a different religion, if that's the way it is, but we can all stand up for each other, and that's what we should do. Uh, and I think. Further, um, look, I believe did that. And the most compassionate way and give his life ultimately for that belief that he had.
I think that speaks powerfully, powerfully of his faith, of his courage and his love for the people that he served and loved and died for. Ultimately this. Regard for human life, of course, extends across all faiths. In September 2025, the rapid support forces attacked a mosque near Abdul Souq Camp during dawn prayers, killing more than 70 people at prayer at. Peace in touch with their God and they were murdered in Khartoum. The Pentecostal church premises and El Hadji l Shigella were destroyed by extremists and members of the Sudanese Armed forces.
Some of these words. By the way, Madam Chair, for someone with me with an Ulster Scots accent that probably probably destroyed the words, uh, with my accent, never mind with my my interpretation of them. But I tried to to put on record, uh, my concern for all those places, which I probably never see, uh, people who I probably never meet in this world, but hopefully we'll meet them in the next. For those who flee, the nightmare often continues. There are reports of Christians, my brothers and sisters who fled rapid support forces, controlled areas, being arrested and detained in Sudanese armed Forces controlled areas.
Disregard for human life seems to be not just with the terrorist groups, but sometimes with government troops as well. In October 2024, military intelligence officials in Shendi reportedly arrested 26 Christian men from the Sudanese Church of Christ, accusing them of affiliation with the Rapid support forces. These accusations appear, Madam chair, to have not been based upon any evidence because there isn't any evidence to prove it, but on suspicion, on authenticity and where they had fled from. They just happen to come from an area where the the the rapid support forces had chased them from.
And then they said they were from that group. It really is quite hard to believe. There are also wider concerns about what has been called the Strange Faces policy, which is rather hard to understand, under which people perceived, perceived, not perceived to belong to communities linked with one side or the other, have been harassed, detained or accused of criminal offences. Even though there is little or indeed no evidence to prove any of that that has affected Christian communities, too, many of whom come from the Nuba Mountains and are of African ethnicity.
So we must also, I believe, confront the horrific reality of conflict related sexual violence. Um, it is, um it is, it is inconceivable. It is so wicked, depraved and evil, uh, that anyone should take advantage of a, of a, a woman or a young girl, uh, just because they are, um, females. They've been raped, they've been abducted, they've been taken into sexual slavery. Um, and. What about a young, a woman who's married to her husband and she's some young daughters and they're taken away and they're taken into sexual slavery, uh, against their will, brought up in a good home and deprived, deprived.
And what has happened against them. There's also reports of men experiencing sexual violence in detention as well. So there are people of depravity in control, in jails and in positions of power who carry out their most depraved acts upon those who they have a responsibility to look after. Survivors need the medical care. Support and access to justice. So I have 3 or 4 asks for the minister, and I must say I really is a joy to see the minister in this place.
Ministers, um, use of words and his tone, I think, Madam Chair, I always. No matter how dark the the the the statement may be in the chamber. And sometimes they're pretty dark. Uh, the minister always happens to develop a tone, uh, which calms us, perhaps, uh, it calms me. I know that. And and that's important that that we can relate to a minister who I believe has, uh, the heart, the heart for the stories that we're telling. We thank him for that.
So, uh, in relation to the resources that are being made available for the work, not only inside Sudan, but also for refugees in neighbouring countries with the honourable gentleman intervention referred to the £146 million humanitarian aid. That's some of the things we're doing. But maybe for those who need medical help, those who are facing the trauma of, of, of depravity against them, those young children who. Could be educated, but there aren't because there's no teachers or no schools to teach them, but also for the neighbouring countries where the refugees are fleeing as well.
The treatment of women and girls by these men is reprehensible. And we must intervene and support those who work in this area, not simply to help those who have been affected, but to train the generation, train the generation to understand that rape and sexual violence is despicable, and the actions of the past cannot be the actions of the future. Any kingdom has, I believe a particular responsibility goes back to the gentleman's intervention. Once again, we are the pen holder on Sudan and the United Nations Security Council, and we have played a leading role on Sudan and the United Nations Human Rights Council.
And that gives us, I believe, Madam Chair, um, a. Duty to lead. Now, I don't believe for one second that the Minister isn't doing that. I don't believe for one second that the government is not doing that. But is there a better ways of doing it?Can we encourage others to perhaps take, be, be, um, on paper, a pen holder like we are in the United Kingdom and maybe there's a bigger role for, for the United States, bigger role for the rest of the countries of Europe to play those in the Western world and those who have a heart for the people and compassion for those who are under pressure.
So I would urge the minister to press for an immediate cease fire. I think the gentleman must have read my three points very, very quickly. I didn't didn't show him the speech, by the way, but he he ascertained what the issues were very, very quickly, and I congratulate him on that for safe humanitarian, humanitarian access for the protection of civilians and for the protection of churches of mosques and other places of worship. So I asked the minister in government to support the mandate of the United Nations fact finding mission on Sudan and to ensure that it's fully resourced and not watered down.
And I'm not here to criticise government for for, um, for their money that they set aside for, for um other countries across the world. And we understand the pressures of finance and reduces that, but every one of us, um, even in the chamber today and the shadow minister, um and, and the debate on the legacy of Jo Cox was referring to, to defeat, uh, and the reduction in money, but that, that soft approach is difficult. And the other one is a military, um, approach. Of course, but there are ways to do it.
So again, Minister, we'd be very, very clear and very happy to have your ideas about how they can protect the civilians, how we can protect the churches, the mosques and the place of worship, and how we can support the United Nations fact finding mission in Sudan. And whenever we have that fact finding mission with all its details, then what plan of action will we take forward to ensure that things can get better?So I also asked the government to press for the the Darfur arms embargo to be extended across the whole of Sudan and for the mandate of the International Criminal Court investigation currently focused on Darfur to be extended to the whole country.
I'm a great believer, madam chair, uh, it's a personal thing. Uh, but I believe there are many in this house with the same, uh, that, uh, people in this world may think they may get away with certain things, but there's a day coming, uh, in the next world when they'll be held accountable. But what I want in this world, Madam Chair, I want them to be accountable for their crimes, for their deprivations, for their abuse of women and children, for their murders, for their killing. I want them to be brought before an international crime court investigation.
And if the minister could give us some indication, uh, what's happening in relation to the International Criminal Court investigation, I'll be deeply indebted. There must also be accountability for those outside Sudan who are fueling the war. If other states are supplying arms funds or political cover to either side, that must be called out. And I'm going to mention, uh, one of those, uh, just shortly, United Kingdom should not be afraid to use sanctions against those who enable atrocities, whether they are inside Sudan or outside.
It doesn't matter where they are in the world. Make them accountable. And I'm quite sure that our government and our minister will make that happen. I'm going to mention the the country that that this whole time many of us feel. Is involved in this right up to their neck. And particularly concerns have been raised about the alleged role of the United Arab Emirates in supporting the rapid support forces. The United Arab Emirates has denied any wrongdoing.
You know, there's so much holier than I. I may try to be, but no, their hands are dirty and their hands are bloody. Uh, and it's time for them to be to be made accountable. The allegations that are made are serious and they simply cannot be ignored. If any external state is supplying arms funds or logistical support to those committing atrocities, it must it must be held accountable. There must be a time when the the. The United Arab Emirates, whoever, whoever is involved in these activities is made accountable.
I referred to a campaign has also been called. I make this point on the Premier League to raise concerns with Manchester City owner Sheikh Mansour, who is both the owner of the club and a senior political figure in the United Arab Emirates. Abdallah Idris, a. Of the Darfur genocide and leader of the Darfur Diaspora Association, has made the point that football is powerful and. We're going to see that in a few. I think. Is it tonight?The first match starts tonight.
We're going to see in the next fortnight three weeks of the World Cup. Football is powerful. Well here's an opportunity for the power of football to do something for the people in relation to the supply of arms funds or logistical support. And and the owner of Manchester City should do his bit as well. He has made the point that football is powerful, and with power comes moral responsibility. It's not just about playing the magnificent game. Uh, for 90 minutes or extra time, whatever it may be.
But whether in sport, diplomacy or trade, no institution should turn away from credible concerns about atrocities. And that is why accountability must not stop at Sudan's borders. If we're serious about ending this war, we must look not only at those pulling the trigger, but those supplying funding and enabling the violence. And it's time to look at those as well. Again, Minister, if you don't mind, uh, I would like some, uh, direction and listen, any discussions with the UAE?Uh, has there been any discussions with the influencer, perhaps?I'm not a supporter, not about what to support.
I support Leicester City. Uh, and we're in the first Division and if we're not careful, we might be in the second. But the thing is that I'm always in. I'm going to diversify slightly. But Coventry City, when they went down, it took them 20 years to come up. And I hope we won't take 20 years for Leicester to come back. I hope it'll be sooner than that. Uh, a lasting peace. Can only be built on justice, accountability and the protection of all Sudanese people.
Muslim, Christian, whoever. The destruction of places of worship must end. The targeting of civilians must end the abuse of women and girls must, must, must end the obstruction of aid must end. I conclude with this the people of Sudan deserve peace. They also deserve justice. They deserve protection, and they deserve the freedom to believe, to worship, and to live without fear. And we must do all within our power, all within our power, our physical, emotional, and power that we have in this country.
Um, to help those people, Sudan, to change their nation, to deliver a hope and a future to their young people. And so young people of tomorrow, as a grandfather, I often think of not just the role of my three boys, but of the six grandchildren and the place you want to leave them in. Uh, so we want to leave the same thing for their young people. And they understand that women and children are valuable to God and to us, and he cares for them as we do.
I always finish with a scripture text, Madam Chair, and you will know that in the Scripture text is Ephesians chapter six, where it tells us, having done all stand. So my my final request is that they cannot stand alone. And we must ensure. Our government stands with them and supports them in that nation, and that they. In Westminster Hall we stand. We can do no more.
14:14
14:14
14:14
Speaker 8
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Speaker 8
Uh, thank you, Mr. Barker. It's a pleasure to serve under your chairmanship today. I believe this might be the first occasion in which I've been able to to do so. And can I, of course, thank the honourable member for Strangford, who not Untypically, asked the right question and does it with deep care and compassion that always that always moves us. Uh, the honourable member was also kind enough to reference the fact that I was in Sudan in 2022 and speak from some limited personal experience in these matters, and I'll come back and reflect on that in just a moment.
But I think it's important to acknowledge from the outset that the conflict that we see in Sudan today is the world's largest humanitarian crisis is a catastrophe unfolding in front of our eyes. But I think what's so disappointing at times is that we don't seem to see it. We don't seem to hear it or read about it because as we focus on other events around the world, so those terrible atrocities that are unfolding in Sudan fall away from the public gaze, and that's deeply regrettable because of what the honourable gentleman has just spoken about, the appalling tragedies that are unfolding there.
Millions of people are enduring, unimaginable suffering. Families are being forced from their homes, communities are being shattered, and many now face starvation. I was in Sudan in 2022 working on an academic project. We were tracing the border between Sudan and Egypt, a British creation, two different borders that are constantly under negotiation, drawn at the end of the 19th and at the start of the 20th centuries, leaving a curious geographical anomaly called Bertha. Well, between those borders, we started off our journey in Khartoum, working alongside Sudanese guides who were extraordinary in their care and in their service and in their hospitality.
And we and as we traveled north through the Nubian Desert, we came across one of the key actors that drive and have driven this conflict to where we are today. As we were driving north through the Nubian Desert, just outside one of the old British railway stations of the. Of the old British railway that used to run from Wadi Halfa to Khartoum. We came across the Wagner Group, the Russian paramilitary organisation, who were stationed in the desert, extracting tons of gold from the sands of the Nubian Desert and transporting it back to Russia to fuel the war in Eastern Europe, but also training at the same time.
Sudanese paramilitaries and. We were warned by local members of the Ababda tribe, who literally inscribed into the sand the symbol of the skull and crossbones, the symbol, of course, of the Wagner group, that we shouldn't proceed any further along that particular wadi. But as the honourable member for Strangford has mentioned, there are forces, internal and external to Sudan who are driving this conflict. He's mentioned the United Arab Emirates, and I'm going to come and talk about them as well as we go on. But we shouldn't also forget the malign forces of the likes of Russia through their proxies, including the Wagner Group.
The scale of the violence that we're seeing today is truly horrifying. Across the country, civilians are living in fear and insecurity and hardship every single day. Amidst this devastating conflict, fundamental human rights, including freedom of religion and belief, are increasingly under threat. And. And at a time globally, when the. The very concept of human rights are under sustained threat. Some might find it controversial to suggest that freedom of religion or belief is indeed a universal human right.
The truth is that it should not be a controversial concept or principle that we should continue to hold on to. Every individual should be free to practice the faith of their choice, to change their beliefs, or to hold no religious belief at all without fear of discrimination, persecution, or violence. Yet reports from Sudan paint a deeply troubling picture. Religious minorities have faced discrimination and intimidation. Places of worship have indeed come under attack, and restrictions on religious practice have affected people from a wide range of faith communities and backgrounds.
These abuses are unacceptable and must not be ignored. The international community has so far failed to do enough. More must be done to safeguard religious freedoms, protect vulnerable minorities and uphold the basic rights and dignity of all Sudanese people. To make just one. Party political reference in our 2024 General election manifesto, the Liberal Democrats reaffirmed our commitment to protecting and defending and promoting human rights, including the rights of those persecuted because of their religious or other faith based beliefs, an unwavering commitment to human rights and the rule of law is, frankly, why I am a liberal Democrat.
But I also recognise that those same commitments have so long defined who we are as a nation and who we are as a people, and there's no better place to express those than here in this chamber. And that is why we are calling for the appointment of an ambassador level champion for freedom of religion or belief, ensuring that the that those issues remain a priority within British foreign policy. We continue to support a robust rights based approach to tackling the persecution of religious minorities around the world.
That means applying diplomatic pressure where necessary, strengthening protections for those seeking asylum, supporting international accountability mechanisms and backing civil society organisations that work tirelessly to defend religious freedom. And in Sudan, that begins with the government working more closely with international partners to protect religious rights and challenge those responsible for persecution and violence. Both endogenous and exogenous, to Sudan. And it must include a clear commitment to upholding article 18 of the Universal Declaration of Human Rights, which guarantees the right to freedom of thought, conscience and religion.
The United Kingdom, as the honourable member for Strangford has already mentioned, has a particular responsibility in this area. It is the United Nations Security Council penholder on Sudan. Therefore, the United Kingdom is uniquely placed to lead international efforts on this crisis, and I would encourage the government to use that position to work with allies and partners to push for a ceasefire and to help prevent further loss of life. The Liberal Democrats have also called for stronger international action to establish a Sudan wide arms embargo, helping to stem the flow of weapons that continue to fuel this conflict.
Alongside that, the government might usefully redouble its efforts to establish a multilateral contact group capable of coordinating the international response and building consensus among key partners. The international community must resist attempts to legitimate and legitimize those driving this conflict within and outwith Sudan, and ensure that individuals responsible for war crimes and serious human rights abuses are held accountable. Member for Strangford mentioned Accountable. Member for Strangford. Mentioned the United States, the United Arab Emirates, and it's important that we mention them because they have so often gone unmentioned in this place in relation to the role that they're playing in Sudan.
And I hope that the minister today might be able to offer some comments and reflections on what can be done to to ensure that the the deeply toxic relationship that they have with Sudan can be can be affected by British diplomacy. We must also be clear that Sudan's future should be determined by civilian leadership and not by armed forces. At home, the government should do more to raise public awareness of the crisis and work closely with the Disasters Emergency Committee to support a nationwide humanitarian appeal. Humanitarian workers continue to risk their lives delivering aid to those in the most desperate need.
Yet they are too often targeted by by attacks and reprisals by both the CSF and the Sudanese armed forces. The UK should work with international and regional partners to secure guarantees for their protection, and press all parties to allow safe and unrestricted humanitarian access across Sudan. We must also take stronger action against the smuggling networks that sustain the conflict and prolong the suffering of ordinary Sudanese people, and at the same time, we cannot lose sight of the humanitarian catastrophe itself. The United Nations Appeal and the regional refugee response must be properly funded.
The government should reverse plans to cut official development assistance, Oda, and set out a clear pathway towards restoring aid spending. Particular attention must be given to Sudanese children who have borne a disproportionate share of this conflict's consequences. Millions have been denied access to education, healthcare and basic security, placing an entire generation at risk individuals and entities responsible for perpetrating, arming or enabling serious human rights abuses in Sudan already face sanctions from the United Kingdom, the United States, the European Union and others. Those measures should remain under constant review and be strengthened where necessary, and I would go so far as to, say, expanded to include the role of the United United Arab Emirates.
The people of Sudan deserve peace. They deserve dignity, and they deserve the freedom to live according to their beliefs, their beliefs, without fear. The international community and the United Kingdom in particular must not look away. We must act with urgency, defend human rights, uphold freedom of religion and belief, and stand alongside the people of Sudan in their time of greatest need.
But I think it's important to acknowledge from the outset that the conflict that we see in Sudan today is the world's largest humanitarian crisis is a catastrophe unfolding in front of our eyes. But I think what's so disappointing at times is that we don't seem to see it. We don't seem to hear it or read about it because as we focus on other events around the world, so those terrible atrocities that are unfolding in Sudan fall away from the public gaze, and that's deeply regrettable because of what the honourable gentleman has just spoken about, the appalling tragedies that are unfolding there.
Millions of people are enduring, unimaginable suffering. Families are being forced from their homes, communities are being shattered, and many now face starvation. I was in Sudan in 2022 working on an academic project. We were tracing the border between Sudan and Egypt, a British creation, two different borders that are constantly under negotiation, drawn at the end of the 19th and at the start of the 20th centuries, leaving a curious geographical anomaly called Bertha. Well, between those borders, we started off our journey in Khartoum, working alongside Sudanese guides who were extraordinary in their care and in their service and in their hospitality.
And we and as we traveled north through the Nubian Desert, we came across one of the key actors that drive and have driven this conflict to where we are today. As we were driving north through the Nubian Desert, just outside one of the old British railway stations of the. Of the old British railway that used to run from Wadi Halfa to Khartoum. We came across the Wagner Group, the Russian paramilitary organisation, who were stationed in the desert, extracting tons of gold from the sands of the Nubian Desert and transporting it back to Russia to fuel the war in Eastern Europe, but also training at the same time.
Sudanese paramilitaries and. We were warned by local members of the Ababda tribe, who literally inscribed into the sand the symbol of the skull and crossbones, the symbol, of course, of the Wagner group, that we shouldn't proceed any further along that particular wadi. But as the honourable member for Strangford has mentioned, there are forces, internal and external to Sudan who are driving this conflict. He's mentioned the United Arab Emirates, and I'm going to come and talk about them as well as we go on. But we shouldn't also forget the malign forces of the likes of Russia through their proxies, including the Wagner Group.
The scale of the violence that we're seeing today is truly horrifying. Across the country, civilians are living in fear and insecurity and hardship every single day. Amidst this devastating conflict, fundamental human rights, including freedom of religion and belief, are increasingly under threat. And. And at a time globally, when the. The very concept of human rights are under sustained threat. Some might find it controversial to suggest that freedom of religion or belief is indeed a universal human right.
The truth is that it should not be a controversial concept or principle that we should continue to hold on to. Every individual should be free to practice the faith of their choice, to change their beliefs, or to hold no religious belief at all without fear of discrimination, persecution, or violence. Yet reports from Sudan paint a deeply troubling picture. Religious minorities have faced discrimination and intimidation. Places of worship have indeed come under attack, and restrictions on religious practice have affected people from a wide range of faith communities and backgrounds.
These abuses are unacceptable and must not be ignored. The international community has so far failed to do enough. More must be done to safeguard religious freedoms, protect vulnerable minorities and uphold the basic rights and dignity of all Sudanese people. To make just one. Party political reference in our 2024 General election manifesto, the Liberal Democrats reaffirmed our commitment to protecting and defending and promoting human rights, including the rights of those persecuted because of their religious or other faith based beliefs, an unwavering commitment to human rights and the rule of law is, frankly, why I am a liberal Democrat.
But I also recognise that those same commitments have so long defined who we are as a nation and who we are as a people, and there's no better place to express those than here in this chamber. And that is why we are calling for the appointment of an ambassador level champion for freedom of religion or belief, ensuring that the that those issues remain a priority within British foreign policy. We continue to support a robust rights based approach to tackling the persecution of religious minorities around the world.
That means applying diplomatic pressure where necessary, strengthening protections for those seeking asylum, supporting international accountability mechanisms and backing civil society organisations that work tirelessly to defend religious freedom. And in Sudan, that begins with the government working more closely with international partners to protect religious rights and challenge those responsible for persecution and violence. Both endogenous and exogenous, to Sudan. And it must include a clear commitment to upholding article 18 of the Universal Declaration of Human Rights, which guarantees the right to freedom of thought, conscience and religion.
The United Kingdom, as the honourable member for Strangford has already mentioned, has a particular responsibility in this area. It is the United Nations Security Council penholder on Sudan. Therefore, the United Kingdom is uniquely placed to lead international efforts on this crisis, and I would encourage the government to use that position to work with allies and partners to push for a ceasefire and to help prevent further loss of life. The Liberal Democrats have also called for stronger international action to establish a Sudan wide arms embargo, helping to stem the flow of weapons that continue to fuel this conflict.
Alongside that, the government might usefully redouble its efforts to establish a multilateral contact group capable of coordinating the international response and building consensus among key partners. The international community must resist attempts to legitimate and legitimize those driving this conflict within and outwith Sudan, and ensure that individuals responsible for war crimes and serious human rights abuses are held accountable. Member for Strangford mentioned Accountable. Member for Strangford. Mentioned the United States, the United Arab Emirates, and it's important that we mention them because they have so often gone unmentioned in this place in relation to the role that they're playing in Sudan.
And I hope that the minister today might be able to offer some comments and reflections on what can be done to to ensure that the the deeply toxic relationship that they have with Sudan can be can be affected by British diplomacy. We must also be clear that Sudan's future should be determined by civilian leadership and not by armed forces. At home, the government should do more to raise public awareness of the crisis and work closely with the Disasters Emergency Committee to support a nationwide humanitarian appeal. Humanitarian workers continue to risk their lives delivering aid to those in the most desperate need.
Yet they are too often targeted by by attacks and reprisals by both the CSF and the Sudanese armed forces. The UK should work with international and regional partners to secure guarantees for their protection, and press all parties to allow safe and unrestricted humanitarian access across Sudan. We must also take stronger action against the smuggling networks that sustain the conflict and prolong the suffering of ordinary Sudanese people, and at the same time, we cannot lose sight of the humanitarian catastrophe itself. The United Nations Appeal and the regional refugee response must be properly funded.
The government should reverse plans to cut official development assistance, Oda, and set out a clear pathway towards restoring aid spending. Particular attention must be given to Sudanese children who have borne a disproportionate share of this conflict's consequences. Millions have been denied access to education, healthcare and basic security, placing an entire generation at risk individuals and entities responsible for perpetrating, arming or enabling serious human rights abuses in Sudan already face sanctions from the United Kingdom, the United States, the European Union and others. Those measures should remain under constant review and be strengthened where necessary, and I would go so far as to, say, expanded to include the role of the United United Arab Emirates.
The people of Sudan deserve peace. They deserve dignity, and they deserve the freedom to live according to their beliefs, their beliefs, without fear. The international community and the United Kingdom in particular must not look away. We must act with urgency, defend human rights, uphold freedom of religion and belief, and stand alongside the people of Sudan in their time of greatest need.
14:23
14:23
Speaker 9
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Speaker 9
Thank you, Mr. Barker, and it's a pleasure to serve under your chairmanship. I'd like to thank my friend, the honourable member for Strangford for securing this important debate and for members across the House for their thoughtful and heartfelt contributions. In particular, I'd pick out the member for Surrey Heath, who has actually been to Sudan and is a rarity in this place. I have not been to Sudan, but I have known the horrors of war. I am particularly grateful to the honourable member for Strangford for securing this debate, because jostling for attention with other terrible conflicts across this world, Sudan is so often forgotten.
That is despite the situation in Sudan being catastrophic. Indeed, Sudan is experiencing the world's worst humanitarian crisis. More than 150 150 000 people have been killed. Nearly 15 million have been displaced, 33 million need humanitarian support, and 40% of Sudan's population faces severe food insecurity. Yet the warring parties continue. Both the Rapid Support Forces and the Sudan Armed Forces constrain aid deliveries to those most in need. They continue to commit massacres on scales that beggar belief appalling acts of sexual violence are being perpetrated against women and girls daily.
And of course, amongst these barbarous acts, worshippers are being abused. Minorities targeted and places of prayer levelled. Religious freedoms of the 2019 draft Constitution. Um. Have collided. The. Those religious freedoms have collided with the reality of war. The warring parties have attacked religious sites, in particular, the RSS appears to prize places of worship because of their strong walls. Fighters take churches and mosques. They often threaten and kill clerics and pastors to do so.
Fighters then violently clear the area of civilians. In turn, the SAF bombards these places of worship, targeting the RSS and other rebel groups. The destruction of religious sites is in itself a terrible thing, but it is worshippers who pay the highest price when good and evil collide. We have seen that far too many times. The drone attack on the Al-fashir mosque that killed over 70 people. The airstrike coming days before Christmas on a church in Al. In 2024.
That attack killed 11, including eight children and the. Visit without notice of SAF fighters accompanied by police officers and religious extremists to demolish the Pentecostal church in El Hajj. It is not only places of worship that are being targeted, practices that have been prohibited post al-Bashir are being carried out with impunity. Religious discrimination is reportedly rife. Vulnerable minorities are being forced to convert. Many are denied work, food or education until they abandon their faith. Hudud laws are being used to target minorities, and yet the Sudanese authorities are in no state to prevent or prosecute the public floggings that had been outlawed.
I'd be delighted to give way.
That is despite the situation in Sudan being catastrophic. Indeed, Sudan is experiencing the world's worst humanitarian crisis. More than 150 150 000 people have been killed. Nearly 15 million have been displaced, 33 million need humanitarian support, and 40% of Sudan's population faces severe food insecurity. Yet the warring parties continue. Both the Rapid Support Forces and the Sudan Armed Forces constrain aid deliveries to those most in need. They continue to commit massacres on scales that beggar belief appalling acts of sexual violence are being perpetrated against women and girls daily.
And of course, amongst these barbarous acts, worshippers are being abused. Minorities targeted and places of prayer levelled. Religious freedoms of the 2019 draft Constitution. Um. Have collided. The. Those religious freedoms have collided with the reality of war. The warring parties have attacked religious sites, in particular, the RSS appears to prize places of worship because of their strong walls. Fighters take churches and mosques. They often threaten and kill clerics and pastors to do so.
Fighters then violently clear the area of civilians. In turn, the SAF bombards these places of worship, targeting the RSS and other rebel groups. The destruction of religious sites is in itself a terrible thing, but it is worshippers who pay the highest price when good and evil collide. We have seen that far too many times. The drone attack on the Al-fashir mosque that killed over 70 people. The airstrike coming days before Christmas on a church in Al. In 2024.
That attack killed 11, including eight children and the. Visit without notice of SAF fighters accompanied by police officers and religious extremists to demolish the Pentecostal church in El Hajj. It is not only places of worship that are being targeted, practices that have been prohibited post al-Bashir are being carried out with impunity. Religious discrimination is reportedly rife. Vulnerable minorities are being forced to convert. Many are denied work, food or education until they abandon their faith. Hudud laws are being used to target minorities, and yet the Sudanese authorities are in no state to prevent or prosecute the public floggings that had been outlawed.
I'd be delighted to give way.
14:27
Speaker 4
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Speaker 4
Madam chair, in relation to one of the bits of information was sent for those who renounce their Christianity. As an example. Um and uh, um. Want to convert or if they're Muslims and they want to convert to Christianity, they then then their fundamental economic rights, including the complete forfeiture of family inheritance, domestic violence, and abandonment without financial recourse for those who were once Muslims and are now Christians, they find themselves in positions where they lose even their most basic rights. Again, the honourable gentleman is right to highlight that, but it is absolutely despicable when you see what's taking place.
14:27
Speaker 9
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Speaker 9
I thank my honourable friend for that intervention. It is abhorrent to, I am sure the whole house. When these things take place and law means nothing when the state lacks even the most basic of capacities to enforce them, amongst this chaos, bad actors are thriving. We have long known that Russia deploys mercenaries in Sudan in return for a free hand to smuggle gold and a Red sea port for Putin. There are reports that the Houthis are using the chaos in Sudan to smuggle weapons to their terrorist forces in Yemen, and in keeping with the topic of this debate, Iran is using its links to Islamist paramilitaries to perpetrate Sudanese civilians suffering, for example, the Al-bara bin Malik Brigade, or.
BB. MB, is a Sudanese Islamist militia that has contributed tens of thousands of fighters to the civil war. The US has placed sanctions on the Bab. The United Kingdom has not. Bab fighters have reportedly been involved in arbitrary arrests, torture and summary executions. The Bab has benefited from training and weapons provided by Iran's Islamic Revolutionary Guard Corps. The IRGC. That same organization that the minister's party. When in opposition, promised to proscribe.
It's almost two years into their time in office, and only this week did they publish the text for the legislation that will make this happen with. This in mind, will the Minister tell us whether he has considered following the US's lead and either sanctioning BNB or even prescribing them?How does the government plan to use global human rights sanction regime created by the last conservative government to crack down on religiously inspired Iranian agitation in Sudan?Indeed, does the minister see a wider role for the human rights sanctions regime in cracking down on abuses of freedom of religion or belief in Sudan?I wonder whether the minister might also tell us how the government is pursuing accountability for religious abuses we have heard about today.
How is the government gathering evidence of these abuses?What has the government done since Sudan was last raised in this House to support the collection of evidence of war crimes, so that those responsible can be held to account?And how is the UK using international courts to pursue those responsible for these atrocities?Finally, turning to the big picture. I know that the House is united in wanting to see the immediate end to hostilities in Sudan. We are all aware that pressing the warring parties into ceasefire, and, we hope an eventual sustainable peace will require combining our efforts with those of our international allies.
So how is the Minister using the UK's role as pen holder for Sudan at the UN Security Council to ensure humanitarian aid is reaching those in such desperate need?How is the Minister using this role to tighten the screws on the warring parties, pressing them into a ceasefire and ending this barbaric conflict?And finally, when did the minister last engage with his US counterparts on their peace efforts in Sudan?And what specifically, is the UK contributing to these efforts as the. Minister or any of his colleagues had discussions with other members of the Sudan Quad about their push for peace.
How is the UK supporting the quad in achieving the goals we hold in common?Planetarion truce followed by a permanent ceasefire. Securing a commitment to protect civilians and supporting an inclusive Sudanese transition to establish a civilian led government in Sudan. The war in Sudan is a stain on the world's conscience. The freedom of religion. Or beliefs abuses being carried out there are utterly barbaric. Britain must exert every ounce of influence and leverage to get the warring parties to lay down their weapons immediately, to secure lasting peace and to hold to account those responsible for being for the crimes being committed in the name of and against religion.
BB. MB, is a Sudanese Islamist militia that has contributed tens of thousands of fighters to the civil war. The US has placed sanctions on the Bab. The United Kingdom has not. Bab fighters have reportedly been involved in arbitrary arrests, torture and summary executions. The Bab has benefited from training and weapons provided by Iran's Islamic Revolutionary Guard Corps. The IRGC. That same organization that the minister's party. When in opposition, promised to proscribe.
It's almost two years into their time in office, and only this week did they publish the text for the legislation that will make this happen with. This in mind, will the Minister tell us whether he has considered following the US's lead and either sanctioning BNB or even prescribing them?How does the government plan to use global human rights sanction regime created by the last conservative government to crack down on religiously inspired Iranian agitation in Sudan?Indeed, does the minister see a wider role for the human rights sanctions regime in cracking down on abuses of freedom of religion or belief in Sudan?I wonder whether the minister might also tell us how the government is pursuing accountability for religious abuses we have heard about today.
How is the government gathering evidence of these abuses?What has the government done since Sudan was last raised in this House to support the collection of evidence of war crimes, so that those responsible can be held to account?And how is the UK using international courts to pursue those responsible for these atrocities?Finally, turning to the big picture. I know that the House is united in wanting to see the immediate end to hostilities in Sudan. We are all aware that pressing the warring parties into ceasefire, and, we hope an eventual sustainable peace will require combining our efforts with those of our international allies.
So how is the Minister using the UK's role as pen holder for Sudan at the UN Security Council to ensure humanitarian aid is reaching those in such desperate need?How is the Minister using this role to tighten the screws on the warring parties, pressing them into a ceasefire and ending this barbaric conflict?And finally, when did the minister last engage with his US counterparts on their peace efforts in Sudan?And what specifically, is the UK contributing to these efforts as the. Minister or any of his colleagues had discussions with other members of the Sudan Quad about their push for peace.
How is the UK supporting the quad in achieving the goals we hold in common?Planetarion truce followed by a permanent ceasefire. Securing a commitment to protect civilians and supporting an inclusive Sudanese transition to establish a civilian led government in Sudan. The war in Sudan is a stain on the world's conscience. The freedom of religion. Or beliefs abuses being carried out there are utterly barbaric. Britain must exert every ounce of influence and leverage to get the warring parties to lay down their weapons immediately, to secure lasting peace and to hold to account those responsible for being for the crimes being committed in the name of and against religion.
14:32
Speaker 10
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Speaker 10
Mrs. Barker, it's a particular pleasure to serve under your chairmanship. I'm standing in on this occasion for my hon. Friend the member for Bridgend, who sent his apologies. He can't be here today. I'm sure he'd be delighted to respond to this very important debate raised by the honourable member for Strangford, who has received many tributes already from contributors. I know that as long as the honourable member is in this House, he will continue to raise these important issues and many others across the world and use his full strength and voice here on their behalf.
And we are all, I am sure, grateful for it. I want to thank honourable colleagues on all sides of the House for their thoughtful contributions. As ever, beautifully named opposite on this occasion rightly spoke of unity across all parties on this question, and I will endeavour in my response, to go through all of the questions that have been raised. I will briefly characterize the situation, but it has been. It's been done very effectively by some of the speakers already. Uh, some of the speakers already have commented on their own connections to the area.
As some of my colleagues in Parliament may know, I lived in South Sudan for two years during a difficult period where many had been displaced from Sudan. And one of the features that was so notable to me in my time there was that the nature of the violence in that part of the world has long been particularly extreme, and many honourable members have already described the nature of it in graphic detail, and I won't do the same again. But it is foremost on the conscience of Foreign Office ministers, as I know it is on honourable and right, honourable members of all sides of the House.
The statistics are horrifying. 9 million people now internally displaced, 4 million now stranded on the borders of neighbouring countries. And as so many others have said already, in the midst of all of that, it is basic human rights, including the freedom to practice one's faith or to hold no faith at all, have not been not just stripped away, but been used as a basis to target violence at specific communities. And the right to freedom of religious belief sits right at the heart of our UK's human rights approach.
As honourable members are aware, last July, the UK Special envoy for freedom of Religion or Belief, and my hon. Friend the member for Northumberland North set out the government's strategy on this issue. That strategy focuses on ten countries, but it does not mean we look away from crises elsewhere. Far from it. And I know that the special envoy, my hon. Friend, has focused on issues in Sudan as well. And let me briefly also abuse my previous life to to respond to the Liberal Democrats, uh, demand for a ambassador level position, having been both a diplomat and a member of this House, I would just like to assure him that I think having a special envoy rooted in this House is a powerful additional thing.
It means that we have a voice which speaks not only with the authority of the Foreign Office, but with the authority of this House as well, when he does on many occasions, including in the appearance I just mentioned. I will.
And we are all, I am sure, grateful for it. I want to thank honourable colleagues on all sides of the House for their thoughtful contributions. As ever, beautifully named opposite on this occasion rightly spoke of unity across all parties on this question, and I will endeavour in my response, to go through all of the questions that have been raised. I will briefly characterize the situation, but it has been. It's been done very effectively by some of the speakers already. Uh, some of the speakers already have commented on their own connections to the area.
As some of my colleagues in Parliament may know, I lived in South Sudan for two years during a difficult period where many had been displaced from Sudan. And one of the features that was so notable to me in my time there was that the nature of the violence in that part of the world has long been particularly extreme, and many honourable members have already described the nature of it in graphic detail, and I won't do the same again. But it is foremost on the conscience of Foreign Office ministers, as I know it is on honourable and right, honourable members of all sides of the House.
The statistics are horrifying. 9 million people now internally displaced, 4 million now stranded on the borders of neighbouring countries. And as so many others have said already, in the midst of all of that, it is basic human rights, including the freedom to practice one's faith or to hold no faith at all, have not been not just stripped away, but been used as a basis to target violence at specific communities. And the right to freedom of religious belief sits right at the heart of our UK's human rights approach.
As honourable members are aware, last July, the UK Special envoy for freedom of Religion or Belief, and my hon. Friend the member for Northumberland North set out the government's strategy on this issue. That strategy focuses on ten countries, but it does not mean we look away from crises elsewhere. Far from it. And I know that the special envoy, my hon. Friend, has focused on issues in Sudan as well. And let me briefly also abuse my previous life to to respond to the Liberal Democrats, uh, demand for a ambassador level position, having been both a diplomat and a member of this House, I would just like to assure him that I think having a special envoy rooted in this House is a powerful additional thing.
It means that we have a voice which speaks not only with the authority of the Foreign Office, but with the authority of this House as well, when he does on many occasions, including in the appearance I just mentioned. I will.
14:35
Speaker 11
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Speaker 11
Thank you, Mr. Barker, and I'm sorry for being late. I had a meeting with the minister, otherwise I would have been here at the beginning of the um of the debate and His Excellency in the chair. My grandmother was born and raised in Birkenhead, so I know not to mess with a strong woman from Merseyside. So it's very good to see you. Um, this afternoon. Can I ask the Minister on the point of strategies?He'll know the strategy was published at the end of last year, and I want to know if he can, um, tell the House what more we will do to make sure that strategy is rooted in our commitment to human rights and of course, expression of, um, freedom of expression and belief.
14:36
Speaker 10
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Speaker 10
I'm grateful to my honourable friend. He's been one of the most focused voices on the questions around the strategy and the UK's approach to the continent. Uh, I hope he'll forgive me if I focus in particular in the way that some of the other earlier interventions have on this particular area in East Africa, where both in Sudan and South Sudan, there have obviously been very significant abuses. And I'll return a little bit later in my speech to some of these questions of wider strategy, because they obviously, as the both the Conservative and Liberal Democrat spokespersons have identified, there are regional elements both to the conflicts in Sudan.
But of course, the wider situation in the east of Africa as well. Uh. I will return briefly, if I may, chair, to the questions of our role in multilateral settings, because they've been raised throughout the debate, we have been clear at the UN Third Committee through the Human Rights Council, as Penholder, as others have referenced at the Security Council, as and as leader of the core group in the Human Rights Council, just how important issues in Sudan are. We regularly take part in interactive dialogues with the UN's Special Rapporteur on freedom of religious belief and other relevant mandate holders to highlight the situation in Sudan.
We made a statement at the UN Third Committee in October, and at the 58th Human Rights Council last year, our special Envoy, our honourable friend, condemned the repression of non-Muslims in detention settings in Sudan following terrible reports of detainees being denied food and coerced to change their beliefs in exactly the way that the Right Honourable member described. We must, as members, honourable members have already pointed out, use every lever to uphold international law. We have repeatedly condemned the countless violations committed by the warring parties in Sudan.
We have called on all of those parties to honour their commitments to protect civilians and uphold international law. But of course, civilians and civilian infrastructure continue to be routinely, deliberately and cruelly targeted, including places of worship. Like the crisis of sexual violence in Sudan, the repression of basic human rights is used by the competing militias as a weapon of war, a means of asserting dominance over the territories they control, and spreading fear into the territories they do not in. That dangerous and frightening context.
We pay tribute to all of those courageous souls inside Sudan who are trying to hold their communities together. There are religious and community leaders trying, against all odds, to lead their own efforts at conflict prevention and reconciliation, peace building and humanitarian relief. It is to support the efforts of those local aid groups that the Foreign Secretary announced in April that the government will double our funding to local humanitarian responders operating in the hardest to reach places. In many places. It is these community groups who are delivering under the most dangerous conditions and with the fewest resources.
We believe that supporting them is one of the most effective ways we can act to get help to those who need it the most. This year, in total, as the honourable member for Strangford identified, the UK is providing a further £146 million in funding for humanitarian relief in Sudan, which should reach almost 2 million people with life saving aid. And I can reassure the Liberal Democrats spokesperson that Sudan has been ring fenced from the wider reductions in aid. And we are alongside our international partners, using every diplomatic lever available to us to press the warring parties to remove obstacles, to aid, to guarantee the safety of civilians and aid workers, and to end the siege tactics that have trapped and starved communities.
I want to comment briefly on others involved in the conflict, as it's been a question that has been raised a number of times so far. We believe, regrettably, that there are, I think, at least 12 other states who are funneling arms into Sudan. That is obviously an inextricable part of the conflict, and honourable members have referred to particular countries in particular concerns. We do engage as the conservative spokesperson asked with all of the members of the quad, I spoke to, uh, Mr. Massad Boulos, who's the United States lead just days ago, and I know the Foreign Secretary and Baroness Chapman are in regular contact with him as well.
The Foreign Secretary and I, of course, regularly meet with our counterparts in the United Arab Emirates. And the Foreign Secretary has put Sudan right at the top of her agenda, including in her discussions with that country. We have taken steps in wider formats as well. We're a founding member, member of the coalition for Atrocity Prevention and Justice, and we're committed to advancing justice for the Sudanese people, including religious communities. This was launched in February, and the coalition is working to press for accountability and justice while bolstering local peace building and protection efforts.
We are also supporting Sudanese human rights defenders to verify and preserve information relating to attacks against civilians and civilian infrastructure. The conservative spokesperson is right to highlight the importance of ensuring that we have an accurate account of these abuses, and, as many honourable members will know, in this particular era, making sure that reports are verified to a high standard is a priority to ensure that the information we receive is accurate and up to date. I was asked by honourable members to comment on sanctions, and I hope I won't try their patience too much in saying that.
We will obviously not comment in the House on upcoming sanctions, but we've now sanctioned 24 individuals and entities aligned with or backing warring parties in Sudan. Those measures are intended to send a clear message to those who fuel this war, those who profit from it, or those who are linked to the gravest violations of international humanitarian law. You will face consequences. But we must be frank in. Important that all of these steps are. They will not by themselves bring peace.
There will be no end to this crisis and no end to the repression and violence facing communities, including those of faith. Unless the fighting finally stops, that. Is why the Foreign Secretary continues to work urgently with international partners to press for a ceasefire and to lay the groundwork for an inclusive, civilian led transition, which will turn that ceasefire into a just and lasting peace that. Needs working alongside the various nations and organisations, I have already mentioned the African Union led quintet to support the Sudanese civil society actors who are working to reshape Sudan's future for recovery, long term peace and justice.
And we must be absolutely clear in everything that we do, any political settlement that emerges from this brutal conflict must be inclusive. It must protect the rights of all Sudanese. It must respect Sudan's diversity, including its many different faith communities, and it must create space for people of all religions and none to live freely, safely and equally under the law. In conclusion. Chair, the UK will continue to stand up for freedom of religious belief in Sudan, not just because it is under attack now, but because it is one of the tests of whether peace can be sustained in the future.
But of course, the wider situation in the east of Africa as well. Uh. I will return briefly, if I may, chair, to the questions of our role in multilateral settings, because they've been raised throughout the debate, we have been clear at the UN Third Committee through the Human Rights Council, as Penholder, as others have referenced at the Security Council, as and as leader of the core group in the Human Rights Council, just how important issues in Sudan are. We regularly take part in interactive dialogues with the UN's Special Rapporteur on freedom of religious belief and other relevant mandate holders to highlight the situation in Sudan.
We made a statement at the UN Third Committee in October, and at the 58th Human Rights Council last year, our special Envoy, our honourable friend, condemned the repression of non-Muslims in detention settings in Sudan following terrible reports of detainees being denied food and coerced to change their beliefs in exactly the way that the Right Honourable member described. We must, as members, honourable members have already pointed out, use every lever to uphold international law. We have repeatedly condemned the countless violations committed by the warring parties in Sudan.
We have called on all of those parties to honour their commitments to protect civilians and uphold international law. But of course, civilians and civilian infrastructure continue to be routinely, deliberately and cruelly targeted, including places of worship. Like the crisis of sexual violence in Sudan, the repression of basic human rights is used by the competing militias as a weapon of war, a means of asserting dominance over the territories they control, and spreading fear into the territories they do not in. That dangerous and frightening context.
We pay tribute to all of those courageous souls inside Sudan who are trying to hold their communities together. There are religious and community leaders trying, against all odds, to lead their own efforts at conflict prevention and reconciliation, peace building and humanitarian relief. It is to support the efforts of those local aid groups that the Foreign Secretary announced in April that the government will double our funding to local humanitarian responders operating in the hardest to reach places. In many places. It is these community groups who are delivering under the most dangerous conditions and with the fewest resources.
We believe that supporting them is one of the most effective ways we can act to get help to those who need it the most. This year, in total, as the honourable member for Strangford identified, the UK is providing a further £146 million in funding for humanitarian relief in Sudan, which should reach almost 2 million people with life saving aid. And I can reassure the Liberal Democrats spokesperson that Sudan has been ring fenced from the wider reductions in aid. And we are alongside our international partners, using every diplomatic lever available to us to press the warring parties to remove obstacles, to aid, to guarantee the safety of civilians and aid workers, and to end the siege tactics that have trapped and starved communities.
I want to comment briefly on others involved in the conflict, as it's been a question that has been raised a number of times so far. We believe, regrettably, that there are, I think, at least 12 other states who are funneling arms into Sudan. That is obviously an inextricable part of the conflict, and honourable members have referred to particular countries in particular concerns. We do engage as the conservative spokesperson asked with all of the members of the quad, I spoke to, uh, Mr. Massad Boulos, who's the United States lead just days ago, and I know the Foreign Secretary and Baroness Chapman are in regular contact with him as well.
The Foreign Secretary and I, of course, regularly meet with our counterparts in the United Arab Emirates. And the Foreign Secretary has put Sudan right at the top of her agenda, including in her discussions with that country. We have taken steps in wider formats as well. We're a founding member, member of the coalition for Atrocity Prevention and Justice, and we're committed to advancing justice for the Sudanese people, including religious communities. This was launched in February, and the coalition is working to press for accountability and justice while bolstering local peace building and protection efforts.
We are also supporting Sudanese human rights defenders to verify and preserve information relating to attacks against civilians and civilian infrastructure. The conservative spokesperson is right to highlight the importance of ensuring that we have an accurate account of these abuses, and, as many honourable members will know, in this particular era, making sure that reports are verified to a high standard is a priority to ensure that the information we receive is accurate and up to date. I was asked by honourable members to comment on sanctions, and I hope I won't try their patience too much in saying that.
We will obviously not comment in the House on upcoming sanctions, but we've now sanctioned 24 individuals and entities aligned with or backing warring parties in Sudan. Those measures are intended to send a clear message to those who fuel this war, those who profit from it, or those who are linked to the gravest violations of international humanitarian law. You will face consequences. But we must be frank in. Important that all of these steps are. They will not by themselves bring peace.
There will be no end to this crisis and no end to the repression and violence facing communities, including those of faith. Unless the fighting finally stops, that. Is why the Foreign Secretary continues to work urgently with international partners to press for a ceasefire and to lay the groundwork for an inclusive, civilian led transition, which will turn that ceasefire into a just and lasting peace that. Needs working alongside the various nations and organisations, I have already mentioned the African Union led quintet to support the Sudanese civil society actors who are working to reshape Sudan's future for recovery, long term peace and justice.
And we must be absolutely clear in everything that we do, any political settlement that emerges from this brutal conflict must be inclusive. It must protect the rights of all Sudanese. It must respect Sudan's diversity, including its many different faith communities, and it must create space for people of all religions and none to live freely, safely and equally under the law. In conclusion. Chair, the UK will continue to stand up for freedom of religious belief in Sudan, not just because it is under attack now, but because it is one of the tests of whether peace can be sustained in the future.
14:44
14:44
Speaker 4
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Speaker 4
Thank you. Madam Chair. First of all, can I thank all the honourable members for their contributions?And first of all, thank the honourable gentleman for Leeds South West and Morley, um, for um having some pre-reading of my of my speech because he knew me for headlines, uh, and I mentioned the foreign intervention. That was my speech, uh, delivered four words or thereabouts, but that would never be a small speech for me, by the way. But, um, just to say thank you for that.
And I know it's a deep interest in Sudan, so thank him for his interest and for coming along today as well. Uh, really pleased to have, uh, my friend the honourable member for Surrey Heath along, um, he and I share many things of deep interest. And this is one of the things we share. Um, we understand the, the issue of persecution for, for those of Christian faith or no faiths, we understand the issues of, of abuse of human rights. And Sudan is unfortunately the epitome of, of all those things that are not happening and going wrong.
He also referred to article 18 of the United Nations Charter. And that's a core issue for all of us when we look at, uh, this key issue referred to the USA and. And and the minister has just confirmed it there. There's some 10 or 12 states involved and, and supply of arms. And that gives us some some concern. The honourable gentleman who um, I again, because he's my guy from Northern Ireland, he, he's almost he's almost a Northern Ireland citizen, the honourable member for Newcastle upon Lyme.
I've got that right under under Lyme. Excuse me. Uh, and it's nice to see him coming along and giving us a focus upon the African strategy. Um and the minister's kindly replied to him, said that that's something that he's brought up regularly and we thank him for that. The honourable gentleman, the Shadow Minister, the honourable member for Spelthorne, gallant member that he is and a great friend of Northern Ireland, a great friend of mine, because of his service in the in the forces and the boldness of what he did to bring about peace.
And he gave us the focus, uh, as he does in his contributions, uh, about 33 million people in need in Sudan, that that's a massive figure. That's half the population of, of the United Kingdom of Great Britain and Northern Ireland. That's, that's how big that is. And that's that you could take from Liverpool down to the very south coast or take Liverpool up to Edinburgh. And that's all those areas. That's where we are at the the vastness of it all referred to the, uh, the killing of pastors and priests, churches and mosques, uh, destroyed.
And if law is to mean anything, this is an accompaniment of laws to mean anything, then the state, um, must act and they can't ignore. And, uh, and that I thought was, was important. He also underlined the issue. What's the USA and states doing?And I'm sure they are doing something. And it's very easy sometimes to, uh, maybe disregard that, but I think it's important that we recognize, but they could be doing more to collectively together. Last comment, uh, Madam Chair, I want to thank the minister very much, uh, for, for his answers and the tone that he does.
It, uh, it gives us great encouragement. And the words are well chosen, well spoken. And he referred to UK penholder referred to the graphic violence, which we don't need to go into, but just thinking about it almost makes you bad. Uh, to tell you the truth. Um, um, they they, um, they actually £146 million will reach another 2 million people. Um, referred to the 12 states that are either, uh, funneling the arms through in that particular area. Um, Sudanese human rights defenders are collecting evidence of abuse.
That's encouraging for as well as I know that some of those guys who are involved in some of the atrocities and bestial activities will be accountable someday for what happens to them. And and he's right. The minister is right. Fighting must stop. It's all our wish that the fighting would stop. And I think we should be encouraged that our minister and our government is a government that's committed to trying to find that peace. And I think that encourages us all.
Um, I would suggest, Madam Chair, there's one more thing we all need to do. If we're not doing it, I think we should do it. We should pray every day for Sudan and its people. Thank you.
And I know it's a deep interest in Sudan, so thank him for his interest and for coming along today as well. Uh, really pleased to have, uh, my friend the honourable member for Surrey Heath along, um, he and I share many things of deep interest. And this is one of the things we share. Um, we understand the, the issue of persecution for, for those of Christian faith or no faiths, we understand the issues of, of abuse of human rights. And Sudan is unfortunately the epitome of, of all those things that are not happening and going wrong.
He also referred to article 18 of the United Nations Charter. And that's a core issue for all of us when we look at, uh, this key issue referred to the USA and. And and the minister has just confirmed it there. There's some 10 or 12 states involved and, and supply of arms. And that gives us some some concern. The honourable gentleman who um, I again, because he's my guy from Northern Ireland, he, he's almost he's almost a Northern Ireland citizen, the honourable member for Newcastle upon Lyme.
I've got that right under under Lyme. Excuse me. Uh, and it's nice to see him coming along and giving us a focus upon the African strategy. Um and the minister's kindly replied to him, said that that's something that he's brought up regularly and we thank him for that. The honourable gentleman, the Shadow Minister, the honourable member for Spelthorne, gallant member that he is and a great friend of Northern Ireland, a great friend of mine, because of his service in the in the forces and the boldness of what he did to bring about peace.
And he gave us the focus, uh, as he does in his contributions, uh, about 33 million people in need in Sudan, that that's a massive figure. That's half the population of, of the United Kingdom of Great Britain and Northern Ireland. That's, that's how big that is. And that's that you could take from Liverpool down to the very south coast or take Liverpool up to Edinburgh. And that's all those areas. That's where we are at the the vastness of it all referred to the, uh, the killing of pastors and priests, churches and mosques, uh, destroyed.
And if law is to mean anything, this is an accompaniment of laws to mean anything, then the state, um, must act and they can't ignore. And, uh, and that I thought was, was important. He also underlined the issue. What's the USA and states doing?And I'm sure they are doing something. And it's very easy sometimes to, uh, maybe disregard that, but I think it's important that we recognize, but they could be doing more to collectively together. Last comment, uh, Madam Chair, I want to thank the minister very much, uh, for, for his answers and the tone that he does.
It, uh, it gives us great encouragement. And the words are well chosen, well spoken. And he referred to UK penholder referred to the graphic violence, which we don't need to go into, but just thinking about it almost makes you bad. Uh, to tell you the truth. Um, um, they they, um, they actually £146 million will reach another 2 million people. Um, referred to the 12 states that are either, uh, funneling the arms through in that particular area. Um, Sudanese human rights defenders are collecting evidence of abuse.
That's encouraging for as well as I know that some of those guys who are involved in some of the atrocities and bestial activities will be accountable someday for what happens to them. And and he's right. The minister is right. Fighting must stop. It's all our wish that the fighting would stop. And I think we should be encouraged that our minister and our government is a government that's committed to trying to find that peace. And I think that encourages us all.
Um, I would suggest, Madam Chair, there's one more thing we all need to do. If we're not doing it, I think we should do it. We should pray every day for Sudan and its people. Thank you.
14:49
15:09
15:10
Speaker 13
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Speaker 13
I beg to move that this house has considered secondary breast cancer, and it's a pleasure to serve under your chairmanship, Mr. Betts. I declare an interest as a governor of the Royal Berkshire Hospital and a family member also holds shares in the medical company. It is a privilege to speak in today's debate on incurable secondary breast cancer, which has been brought to Westminster Hall by myself and the honourable member for the City of Durham, Mary Kelly, for it. I thank the many healthcare professionals, charities and life science organisations that have provided valuable information ahead of this debate.
I also thank the patients and charities. Breast Cancer now make seconds count and met met you UK in the public gallery for their work and support. I would like to recognise everyone involved in the Moments That Count campaign exhibition last November, particularly the brave testimonies from Clare, Laura, Jo, Lisa and Juliet. As I have mentioned many times in Parliament, I am a breast cancer survivor. That experience showed me the importance of early diagnosis and effective treatment, not only for survival but for the quality of life.
My own diagnosis was delayed. I was initially sent away by the first GP I saw and waited several months before being diagnosed. During that time, the cancer spread to my lymph glands, which had to be removed. 18 years later, I still experienced the consequences of that. Most recently just a few weeks ago. Unfortunately, my treatment was successful for those living with secondary breast cancer. However, a cure is not an option. Secondary breast cancer occurs when the disease spreads to other parts of the parts of the body.
Treatments can slow its progression and give people more time, but it cannot be cured. Around 11,000 women and 90 men die from breast cancer every year, and most of those deaths are caused by secondary breast cancer. For those living with the disease, every extra month matters. Yet too often their voices are not heard, their needs are not recognised, and time runs out. I certainly will.
I also thank the patients and charities. Breast Cancer now make seconds count and met met you UK in the public gallery for their work and support. I would like to recognise everyone involved in the Moments That Count campaign exhibition last November, particularly the brave testimonies from Clare, Laura, Jo, Lisa and Juliet. As I have mentioned many times in Parliament, I am a breast cancer survivor. That experience showed me the importance of early diagnosis and effective treatment, not only for survival but for the quality of life.
My own diagnosis was delayed. I was initially sent away by the first GP I saw and waited several months before being diagnosed. During that time, the cancer spread to my lymph glands, which had to be removed. 18 years later, I still experienced the consequences of that. Most recently just a few weeks ago. Unfortunately, my treatment was successful for those living with secondary breast cancer. However, a cure is not an option. Secondary breast cancer occurs when the disease spreads to other parts of the parts of the body.
Treatments can slow its progression and give people more time, but it cannot be cured. Around 11,000 women and 90 men die from breast cancer every year, and most of those deaths are caused by secondary breast cancer. For those living with the disease, every extra month matters. Yet too often their voices are not heard, their needs are not recognised, and time runs out. I certainly will.
15:12
Speaker 11
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Speaker 11
Be grateful to the honourable member for Wokingham and to my friend from Durham for securing this vital debate, and I'm pleased that it was rescheduled from earlier in the year and that we've had the opportunity to be here today in advance of this debate. I heard from many women in Newcastle-under-lyme impacted by breast cancer, and I'm here today to give my voice, as the honourable member says, to their calls for action to place on record my support for the More to Live campaign and to pay tribute to breast cancer now for all they do.
And I am grateful to my two colleagues for giving us the opportunity to do that today.
And I am grateful to my two colleagues for giving us the opportunity to do that today.
15:13
Speaker 13
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Speaker 13
I. Thank the honourable member for his intervention and for putting on record. Um, his support. This debate is very important. It gives us the opportunity to highlight the experiences of people living with secondary breast cancer and action needed to support them. One of the biggest challenges is the lack of reliable data. It is estimated that around 61000 people in the UK are living with secondary breast cancer, but we do not know that for certain the disease remains under-recognised, poorly tracked and inadequately recorded.
People living with secondary breast cancer are still not consistently counted. Too often they are invisible within the health system, making it harder to provide the tailored treatment services and support they need. 20 years ago, data collection on metastatic breast cancer was identified as a priority by breast cancer. Now, Secondary Breast Cancer Task Force progress was made in 2013 when mandatory collection data collection was introduced, and subsequent strategies have promised further improvements. But we're still flying blind. The first two national audits of metastatic breast cancer were unable to provide a complete picture because recurrence data remains insufficient in both quality and completeness.
The audit has demonstrated just how important it is that this issue is addressed. Without accurate data, the NHS cannot properly plan services allocated resources, allocate resources or understand the scale of need. Better data could also help address continuing gaps in access to clinical nurse specialists. For people with metastatic breast cancer. Most importantly, people living with the disease are left feeling that they do not count because the system cannot guarantee the support they need. The reality is simple if we do not know how many people have the disease, we cannot hope to support them effectively.
This challenge is not unique to the UK. It is a global issue and international collaboration can help us learn from best practice elsewhere. But we should be leading the way. That is why the government's national cancer plan is so important. The plan commits to defining and counting recurrent cancers. Starting with metastatic breast cancer in 2026, that commitment must now be delivered in full, and Parliament must hold the government to account for achieving it. The ongoing work of the National Disease Registration Service, with NHS trusts to improve data collection is encouraging, but progress will require national leadership and accountability.
I'm delighted the honourable member for West Lancashire is here today. Ashley Dalton was the minister who drove the National Cancer Plan through Parliament. I did mention a constituency first, but I'll take your guidance please. Apologies for that. Recently, I joined a meeting with her and charities including Breast Cancer Now, Breast Cancer Network Australia and Rethink Breast Cancer. Together. Those charities are working across the UK, Australia and Canada to improve metastatic breast cancer data and ensure patients voices are heard.
The message is clear if we do not count people, we cannot support them. Collecting and publishing this data is essential because people with metastatic breast cancer do count alongside better data, timely access to new treatments is critical. Secondary breast cancer may be incurable, but advances in medicine have transformed outcomes for many patients, giving them more time with the people they love. Yet too many patients still struggle to access life extending treatments on the NHS. One example is enhertu, a treatment for people with Her2.
Low metastatic breast cancer. It has the potential to extend, extend and improve lives. Yet it was rejected for routine NHS use in England in 2024 on cost grounds. As a result, many patients have been unable to access the treatment they need. Meanwhile, Enhertu is already available in 26 European countries, including Scotland. England is falling behind recent changes to Nice's cost effectiveness threshold provide an important opportunity to revisit the decision. I urge Daiichi Sankyo, AstraZeneca nice and NHS England to work together to reach an agreement so that patients could benefit from enhertu and access it more broadly.
Concerns remain about how Nice assesses medicines and the impact this has on innovation and access to treatments, particularly the particularly following the introduction of the severity modifier in 2022. Even after recent changes, the threshold for approving some medicines for metastatic cancer remains lower than it was before 2022. Nice itself has estimated that the revisions may result in only 3 to 5 additional medicines being approved each year. It's the patients who pay the price for this life. Extending treatments exist, but they are not always available to those who need them most.
That cannot be right. The commitments within the National Cancer Plan to streamline medicine approvals and accelerate clinical trials is welcome. Likewise, the recent UK, US pharmaceutical agreements, including commitments to strengthen support for the life for life sciences sector. However, without meaningful investment in innovation, innovative medicines for severe conditions, access will remain limited and patients will continue to miss opportunities for longer and better lives. Support services also remain inadequate.
People living with secondary breast cancer are still not consistently counted. Too often they are invisible within the health system, making it harder to provide the tailored treatment services and support they need. 20 years ago, data collection on metastatic breast cancer was identified as a priority by breast cancer. Now, Secondary Breast Cancer Task Force progress was made in 2013 when mandatory collection data collection was introduced, and subsequent strategies have promised further improvements. But we're still flying blind. The first two national audits of metastatic breast cancer were unable to provide a complete picture because recurrence data remains insufficient in both quality and completeness.
The audit has demonstrated just how important it is that this issue is addressed. Without accurate data, the NHS cannot properly plan services allocated resources, allocate resources or understand the scale of need. Better data could also help address continuing gaps in access to clinical nurse specialists. For people with metastatic breast cancer. Most importantly, people living with the disease are left feeling that they do not count because the system cannot guarantee the support they need. The reality is simple if we do not know how many people have the disease, we cannot hope to support them effectively.
This challenge is not unique to the UK. It is a global issue and international collaboration can help us learn from best practice elsewhere. But we should be leading the way. That is why the government's national cancer plan is so important. The plan commits to defining and counting recurrent cancers. Starting with metastatic breast cancer in 2026, that commitment must now be delivered in full, and Parliament must hold the government to account for achieving it. The ongoing work of the National Disease Registration Service, with NHS trusts to improve data collection is encouraging, but progress will require national leadership and accountability.
I'm delighted the honourable member for West Lancashire is here today. Ashley Dalton was the minister who drove the National Cancer Plan through Parliament. I did mention a constituency first, but I'll take your guidance please. Apologies for that. Recently, I joined a meeting with her and charities including Breast Cancer Now, Breast Cancer Network Australia and Rethink Breast Cancer. Together. Those charities are working across the UK, Australia and Canada to improve metastatic breast cancer data and ensure patients voices are heard.
The message is clear if we do not count people, we cannot support them. Collecting and publishing this data is essential because people with metastatic breast cancer do count alongside better data, timely access to new treatments is critical. Secondary breast cancer may be incurable, but advances in medicine have transformed outcomes for many patients, giving them more time with the people they love. Yet too many patients still struggle to access life extending treatments on the NHS. One example is enhertu, a treatment for people with Her2.
Low metastatic breast cancer. It has the potential to extend, extend and improve lives. Yet it was rejected for routine NHS use in England in 2024 on cost grounds. As a result, many patients have been unable to access the treatment they need. Meanwhile, Enhertu is already available in 26 European countries, including Scotland. England is falling behind recent changes to Nice's cost effectiveness threshold provide an important opportunity to revisit the decision. I urge Daiichi Sankyo, AstraZeneca nice and NHS England to work together to reach an agreement so that patients could benefit from enhertu and access it more broadly.
Concerns remain about how Nice assesses medicines and the impact this has on innovation and access to treatments, particularly the particularly following the introduction of the severity modifier in 2022. Even after recent changes, the threshold for approving some medicines for metastatic cancer remains lower than it was before 2022. Nice itself has estimated that the revisions may result in only 3 to 5 additional medicines being approved each year. It's the patients who pay the price for this life. Extending treatments exist, but they are not always available to those who need them most.
That cannot be right. The commitments within the National Cancer Plan to streamline medicine approvals and accelerate clinical trials is welcome. Likewise, the recent UK, US pharmaceutical agreements, including commitments to strengthen support for the life for life sciences sector. However, without meaningful investment in innovation, innovative medicines for severe conditions, access will remain limited and patients will continue to miss opportunities for longer and better lives. Support services also remain inadequate.
15:19
Speaker 5
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Speaker 5
Pathways and providing emotional support. Yet many people with secondary breast cancer still do not have access to a clinical nurse specialist. Even among those who do. A quarter have not seen their specialist since diagnosis, and only 65% their specialist has enough time for them. The reason is simple caseloads are too high. We must recognise the profound emotional impact of secondary breast cancer. More than a quarter of patients say they did not receive enough mental health support, and many need greater support for their families as well.
The NHS long term plan promised every cancer patient access to a clinical nurse, specialist or support worker. That commitment must now be delivered for people with secondary breast cancer who need specialist expertise to navigate this complex disease. Mr. Betts People living with metastatic breast cancer do not have time to wait. They need to be counted. They need access to the support they deserve, and they need rapid access to treatments that can give them more precious time with the people that they love.
So I ask the minister for two clear commitments. First, will she set out a timeline for delivering the National Cancer Plan commitment to define and count recurrent cancers, starting with metastatic breast cancer in 2026. And will she outline any plans to make the data currently held by the National Disease Registration Service publicly available?Secondly, what is the government doing to support metastatic breast cancer patients who may miss out on life extending medicines because of pricing and access barriers?Thank you very much.
The NHS long term plan promised every cancer patient access to a clinical nurse, specialist or support worker. That commitment must now be delivered for people with secondary breast cancer who need specialist expertise to navigate this complex disease. Mr. Betts People living with metastatic breast cancer do not have time to wait. They need to be counted. They need access to the support they deserve, and they need rapid access to treatments that can give them more precious time with the people that they love.
So I ask the minister for two clear commitments. First, will she set out a timeline for delivering the National Cancer Plan commitment to define and count recurrent cancers, starting with metastatic breast cancer in 2026. And will she outline any plans to make the data currently held by the National Disease Registration Service publicly available?Secondly, what is the government doing to support metastatic breast cancer patients who may miss out on life extending medicines because of pricing and access barriers?Thank you very much.
15:22
Speaker 4
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Speaker 4
Next, going to call Mary Kelly. As the co-sponsor, and then I'll give an indication after that to members about how long they may have to speak to try and get us to the end of the debate in a reasonable fashion. Mary Kelly point oh, and I've got to just make sure I get it right. The question is that this House is considered secondary breast cancer. Mary Kelly.
15:22
15:22
Speaker 14
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Speaker 14
And it's a pleasure to serve under your chairmanship, Mr. Betts. And I was grateful to work with the honourable member for Wokingham to secure this important debate. And I thank the campaigners who work to ensure people living with secondary breast cancer are seen, heard and supported. And I'm thrilled that the member for West Lancashire is here today, who has spoken so openly about her diagnosis, and I'm sure her remarks today will be invaluable. And I'm speaking not only as a member of Parliament, but as someone who has been through breast cancer.
I was fortunate my cancer was picked up through screening and caught early. I received timely treatment and I'm now cancer free. But I'm forever grateful to the teams at the QE Hospital in Gateshead and to the Maggie's Centre and Future Dreams for their support and whenever I can, I encourage people to attend screening appointments and to check themselves. In fact, I'm hosting an event on the 14th of July alongside leading breast cancer advocates and sport and ambassadors focused on raising awareness of the importance of women prioritising the breast health.
And I'd love the minister to join us, and I know my personal experience wasn't that of someone living with secondary breast cancer for people whose cancer has spread and can be treated but not cured. Time is everything. And in 2026, it's unacceptable that we don't know with confidence how many people are living with secondary breast cancer. We know it's around 6000 people living with it in the UK, but that remains just an estimate. And more than a decade after data collection was made mandatory, it's still not being consistently or accurately recorded across the country.
And if people aren't properly counted, their needs are too easily overlooked. The NHS can't plan the right number of specialist nurses, oncology appointments, palliative care services, mental health support or clinical trials. If the true scale of need isn't known. So I welcome the work of the National Disease Registration Service with NHS trusts to improve data returns on metastatic breast cancer. But I'm concerned that no data has yet been published. And I also welcome the government's commitment to the National Cancer Plan to define and count recurrent cancers, starting with metastatic breast cancer, and to ensure patients have a named primary contact.
But patients need delivery now, not just commitment. The NHS must routinely capture data not only on diagnosis but on treatment and support needs as well. And that's how we move from counting people, in theory to improving services available to them in practice. In Durham, we saw trust shattered when failures were identified in breast services at County Durham and Darlington Foundation Trust. The concerns were way beyond isolated mistakes, and patients wondered whether the care they received was truly in line with the standards that they should have expected.
Patients placed their lives in the hands of the system. They deserve to know decisions about their care is evidence based, properly scrutinised and made through strong multidisciplinary teams. And when that trust is broken, it's very difficult to rebuild. And I pay tribute to those who spoke out like my constituent Jackie, on behalf of her sorely missed daughter, Michaela, and Amelia, Catt and Nadim, who formed the Pink Justice Network. And I do, however, recognise the efforts of the new senior leadership team at the trust, working to reform those services and repair patient confidence.
I also want to raise access to treatments. Everyone living with secondary breast cancer deserves access to new, effective, life extending treatments, but there are serious concerns that the way Nice currently assesses some drugs is limiting access for people with incurable metastatic breast cancer. Since the introduction of the severity modifier, campaigners have warned some advanced cancer treatments have been disadvantaged compared to the previous system. Breast cancer now report only a minority of end of life treatments assessed under the new approach have received the same level of priority that they would have received before in.
Her2 is the clearest example it could give people with Her2 low metastatic breast cancer more time, yet it was not recommended for routine NHS use in England in 2024 as a cost effective pricing agreement could not be reached, and since then eligible patients have missed out, with people asking why should a life extending treatment be available in Scotland but not in England?And the government's decision to increase Nice's cost effectiveness threshold for new medicines is welcome, and I hope that creates an opportunity to reach an agreement on Enhertu. I also welcome the fact that discussions between AstraZeneca, Daiichi Sankyo, NHS England and Nice are understood to have begun.
More than 5000 people have signed the petition calling for urgent agreement on Enhertu. They're asking for something very simple for all parties to come together and find a way to give eligible, eligible, eligible patients more time. And I must also mention the work of our hospices like Saint Cuthbert's in Durham, supported by charities like Marie Curie, Marie Curie, for providing people living with secondary breast cancer the services they need. Marie Curie reports. 1 in 3 people do not receive the care and support they need at the end of life.
So I welcome the fact that the government is developing a palliative care and end of life care, modern service framework, and I hope that that framework will address the lack of support available outside normal working hours. It will embed palliative care in neighbourhood health and ensure the palliative care workforce is fit for the future. And I'd like to ask the minister to set out how the government will ensure three things. First, that secondary breast cancer data is collected and published consistently across every trust, with clear accountability for delivery.
Secondly, that every patient has meaningful access to a specialist named contact with time and capacity to support them properly. And thirdly, that people living with secondary breast cancer are not left behind when life extending treatments become available. Chair secondary breast cancer is not just a diagnosis. Mothers miss milestones. Daughters face uncertain futures. Partners becoming carers and families must live with a clock they never ask to hear. Ticking. We don't ask for kind words today.
But for action. Action on research. On access to. Treatment. On support. On giving people more time not just to survive, but to live. Because behind every diagnosis is a person who still has dreams, plans, and a life worth fighting for. Thank you.
I was fortunate my cancer was picked up through screening and caught early. I received timely treatment and I'm now cancer free. But I'm forever grateful to the teams at the QE Hospital in Gateshead and to the Maggie's Centre and Future Dreams for their support and whenever I can, I encourage people to attend screening appointments and to check themselves. In fact, I'm hosting an event on the 14th of July alongside leading breast cancer advocates and sport and ambassadors focused on raising awareness of the importance of women prioritising the breast health.
And I'd love the minister to join us, and I know my personal experience wasn't that of someone living with secondary breast cancer for people whose cancer has spread and can be treated but not cured. Time is everything. And in 2026, it's unacceptable that we don't know with confidence how many people are living with secondary breast cancer. We know it's around 6000 people living with it in the UK, but that remains just an estimate. And more than a decade after data collection was made mandatory, it's still not being consistently or accurately recorded across the country.
And if people aren't properly counted, their needs are too easily overlooked. The NHS can't plan the right number of specialist nurses, oncology appointments, palliative care services, mental health support or clinical trials. If the true scale of need isn't known. So I welcome the work of the National Disease Registration Service with NHS trusts to improve data returns on metastatic breast cancer. But I'm concerned that no data has yet been published. And I also welcome the government's commitment to the National Cancer Plan to define and count recurrent cancers, starting with metastatic breast cancer, and to ensure patients have a named primary contact.
But patients need delivery now, not just commitment. The NHS must routinely capture data not only on diagnosis but on treatment and support needs as well. And that's how we move from counting people, in theory to improving services available to them in practice. In Durham, we saw trust shattered when failures were identified in breast services at County Durham and Darlington Foundation Trust. The concerns were way beyond isolated mistakes, and patients wondered whether the care they received was truly in line with the standards that they should have expected.
Patients placed their lives in the hands of the system. They deserve to know decisions about their care is evidence based, properly scrutinised and made through strong multidisciplinary teams. And when that trust is broken, it's very difficult to rebuild. And I pay tribute to those who spoke out like my constituent Jackie, on behalf of her sorely missed daughter, Michaela, and Amelia, Catt and Nadim, who formed the Pink Justice Network. And I do, however, recognise the efforts of the new senior leadership team at the trust, working to reform those services and repair patient confidence.
I also want to raise access to treatments. Everyone living with secondary breast cancer deserves access to new, effective, life extending treatments, but there are serious concerns that the way Nice currently assesses some drugs is limiting access for people with incurable metastatic breast cancer. Since the introduction of the severity modifier, campaigners have warned some advanced cancer treatments have been disadvantaged compared to the previous system. Breast cancer now report only a minority of end of life treatments assessed under the new approach have received the same level of priority that they would have received before in.
Her2 is the clearest example it could give people with Her2 low metastatic breast cancer more time, yet it was not recommended for routine NHS use in England in 2024 as a cost effective pricing agreement could not be reached, and since then eligible patients have missed out, with people asking why should a life extending treatment be available in Scotland but not in England?And the government's decision to increase Nice's cost effectiveness threshold for new medicines is welcome, and I hope that creates an opportunity to reach an agreement on Enhertu. I also welcome the fact that discussions between AstraZeneca, Daiichi Sankyo, NHS England and Nice are understood to have begun.
More than 5000 people have signed the petition calling for urgent agreement on Enhertu. They're asking for something very simple for all parties to come together and find a way to give eligible, eligible, eligible patients more time. And I must also mention the work of our hospices like Saint Cuthbert's in Durham, supported by charities like Marie Curie, Marie Curie, for providing people living with secondary breast cancer the services they need. Marie Curie reports. 1 in 3 people do not receive the care and support they need at the end of life.
So I welcome the fact that the government is developing a palliative care and end of life care, modern service framework, and I hope that that framework will address the lack of support available outside normal working hours. It will embed palliative care in neighbourhood health and ensure the palliative care workforce is fit for the future. And I'd like to ask the minister to set out how the government will ensure three things. First, that secondary breast cancer data is collected and published consistently across every trust, with clear accountability for delivery.
Secondly, that every patient has meaningful access to a specialist named contact with time and capacity to support them properly. And thirdly, that people living with secondary breast cancer are not left behind when life extending treatments become available. Chair secondary breast cancer is not just a diagnosis. Mothers miss milestones. Daughters face uncertain futures. Partners becoming carers and families must live with a clock they never ask to hear. Ticking. We don't ask for kind words today.
But for action. Action on research. On access to. Treatment. On support. On giving people more time not just to survive, but to live. Because behind every diagnosis is a person who still has dreams, plans, and a life worth fighting for. Thank you.
15:31
15:31
Speaker 15
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Speaker 15
Thank you. It's a pleasure to serve under your chairmanship. I want to focus today on something that sits at the heart of improving outcomes for people living with secondary breast cancer data, research and recognition. And this especially applies to people suffering from lobular breast cancer. Last year, my office asked the government whether the new national audit of Metastatic breast cancer would provide a breakdown by breast cancer subtype and hormone receptor status. The response from the Department of Health and Social Care was striking.
The government has effectively admitted that the data simply is not there in a complete or meaningful form. As of now, there is still no clear national picture of how many people are living with different forms of secondary breast cancer, what treatments they receive, and what outcomes they face. And this matters because if we can't accurately count metastatic breast cancer patients, we also can't properly plan for services, understand needs, target research funding or develop treatments. We can't fix what we don't measure. Now, this is especially true for lobular breast cancer.
Invasive lobular breast carcinoma is the second most common form of breast cancer. 22 more people are diagnosed every single day in the UK, yet it remains chronically under-researched and poorly understood. Unlike ductal breast cancer, lobular cancer often does not form a distinct lump. It grows in thin, single file patterns, making it far harder to detect on standard mammograms and therefore often leading to delayed diagnosis. Secondary lobular breast cancer also presents further challenges because it tends to be found in untypical places such as the liver, lungs, brains, bladder, and even the eyes.
Whereas other types of breast cancer spread mostly to the bones. These key biological differences there's still no specific treatment pathway designed for lobular breast cancer patients. That's extraordinary when you consider just how many women are affected. For too long, secondary and metastatic lobular breast cancer has existed in a blind spot. Historically, cancer registries have focused on primary diagnoses and often failed to properly track recurrence or progression. Mandatory reporting has improved things somewhat over the last decade, but huge gaps remain.
This is why the work of campaigners and researchers has been so important. I therefore especially want to recognise and pay tribute to the work of Doctor Susan Michaelis, founder of the Lobular Moonshot Project. She's also one of my Horsham constituents and she's sadly herself died of lobular breast cancer almost a year ago. Susan was relentless in pushing this issue into public view. She understood that without data, without dedicated research, and without recognition that lobular breast cancer is different, progress would remain unacceptably slow.
Her work has already helped encourage NHS England towards releasing the first dedicated statistics on lobular breast cancer, but much more needs to happen. This is about more than statistics. It's about people living for years with secondary breast cancer while feeling invisible within the system. Better subtype data would help us understand metastatic disease properly. Better research would improve diagnosis and ultimately dedicated treatment pathways for lobular breast cancer could help us move closer to what patients want to hear. Most of all, that their cancer is not just treatable but curable.
The moonshot project is looking for just £20 million over five years to to fund research into the basic biology of lobular breast cancer, researchers at the Manchester Breast Centre are ready and willing to take on the mission. They could start tomorrow. The Lobular moonshot project is supported by more than 460 sitting MPs, and that is more than you'll find on any other single issue. All it needs now is for the government to press the button while we wait for this. Women face poor outcomes and require medication medications that were actually designed for other types of cancer and which cost upwards of £3,000 per month.
Now is the time for government to commit to front loaded funding to save lives, to save money for the for the NHS, but most of all to demonstrate to these women that they matter. So today I ask the Health Minister for her support in finding the modest investment required to find answers. That is very common, but sadly much neglected disease. Thank you.
The government has effectively admitted that the data simply is not there in a complete or meaningful form. As of now, there is still no clear national picture of how many people are living with different forms of secondary breast cancer, what treatments they receive, and what outcomes they face. And this matters because if we can't accurately count metastatic breast cancer patients, we also can't properly plan for services, understand needs, target research funding or develop treatments. We can't fix what we don't measure. Now, this is especially true for lobular breast cancer.
Invasive lobular breast carcinoma is the second most common form of breast cancer. 22 more people are diagnosed every single day in the UK, yet it remains chronically under-researched and poorly understood. Unlike ductal breast cancer, lobular cancer often does not form a distinct lump. It grows in thin, single file patterns, making it far harder to detect on standard mammograms and therefore often leading to delayed diagnosis. Secondary lobular breast cancer also presents further challenges because it tends to be found in untypical places such as the liver, lungs, brains, bladder, and even the eyes.
Whereas other types of breast cancer spread mostly to the bones. These key biological differences there's still no specific treatment pathway designed for lobular breast cancer patients. That's extraordinary when you consider just how many women are affected. For too long, secondary and metastatic lobular breast cancer has existed in a blind spot. Historically, cancer registries have focused on primary diagnoses and often failed to properly track recurrence or progression. Mandatory reporting has improved things somewhat over the last decade, but huge gaps remain.
This is why the work of campaigners and researchers has been so important. I therefore especially want to recognise and pay tribute to the work of Doctor Susan Michaelis, founder of the Lobular Moonshot Project. She's also one of my Horsham constituents and she's sadly herself died of lobular breast cancer almost a year ago. Susan was relentless in pushing this issue into public view. She understood that without data, without dedicated research, and without recognition that lobular breast cancer is different, progress would remain unacceptably slow.
Her work has already helped encourage NHS England towards releasing the first dedicated statistics on lobular breast cancer, but much more needs to happen. This is about more than statistics. It's about people living for years with secondary breast cancer while feeling invisible within the system. Better subtype data would help us understand metastatic disease properly. Better research would improve diagnosis and ultimately dedicated treatment pathways for lobular breast cancer could help us move closer to what patients want to hear. Most of all, that their cancer is not just treatable but curable.
The moonshot project is looking for just £20 million over five years to to fund research into the basic biology of lobular breast cancer, researchers at the Manchester Breast Centre are ready and willing to take on the mission. They could start tomorrow. The Lobular moonshot project is supported by more than 460 sitting MPs, and that is more than you'll find on any other single issue. All it needs now is for the government to press the button while we wait for this. Women face poor outcomes and require medication medications that were actually designed for other types of cancer and which cost upwards of £3,000 per month.
Now is the time for government to commit to front loaded funding to save lives, to save money for the for the NHS, but most of all to demonstrate to these women that they matter. So today I ask the Health Minister for her support in finding the modest investment required to find answers. That is very common, but sadly much neglected disease. Thank you.
15:35
15:36
15:36
Speaker 16
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Speaker 16
It is an honour to serve under your chairmanship. Of all like to acknowledge campaigners from from make seconds count met up UK breast cancer now in the gallery and fellow MBC patients that I know are also joining us in in the gallery today. Um and I'd also like to take this opportunity if the chair will indulge to say a special thank you to my team at the Clatterbridge in Liverpool for the support that they give me through, through my treatment and diagnosis. And I'm delighted to be able to speak in this debate on secondary breast cancer, secondary, metastatic advanced stage four disseminated.
That's a new one on me. Distant metastasis spread. Lots of words that all mean the same thing, which is an incurable breast cancer. Also, for completeness, there's a new relatively new term called oligometastatic, which is, um, very small or very few metastases. And there is a school of thought that this may be curable, but the jury is still out on that. So we'll stick with the terms that we've got. But there's some other words that also describe secondary breast cancer.
Words like devastating, terrifying, overwhelming, horrifying, desperate, anger, resentment, and fear. Words that I know I have certainly felt. And this debate calls it secondary breast cancer. And I think it's really important that we just get it right, because I have heard many, many people think that secondary breast cancer means you've got breast cancer for the second time. It doesn't. Um, let me be really clear about that. Secondary breast cancer is, as we've heard, about a breast cancer that has spread outside the breast tissue and is now incurable.
And it can be something that can be diagnosed after a primary diagnosis, a primary diagnosis, being a breast cancer that's potentially curable, or when you are first diagnosed with breast cancer, it could be secondary, which is called a de novo diagnosis. So that's what secondary breast cancer is. And as we've heard, I, I have it along with many, many other people. And I wanted to take the opportunity to talk about some of the myths around breast cancer. And colleagues in the debate have already spoken.
Um, really, really well about some of the issues and concerns and, and the politics and the policies involved. But I wanted to sort of really kind of talk about the reality and some of the myths about secondary breast cancer. And the big myth for many people is that it is curable. And I mean, the number of people who very, very well meaningly have said to me, oh, how long will you be on treatment?I will be on treatment until I die. I hope you make a full recovery.
I'm not going to be making a recovery. And my favourite, which and I know people mean well, but if anyone can beat this, you can. And I know people. Meanwhile, when they say this. But the truth is I cannot beat it. I will always be in treatment and I will not recover. And that sounds like, you know, it is absolutely terrifying. But we have to be honest about this. If we are not honest and grasp the nettle about this disease, we cannot truly tackle it.
There's also some other myths about breast cancer that when it spreads, it's a new cancer. So if you have breast cancer and then you have the cancer in your bones, that's not bone cancer. It is breast cancer in your bones. It looks like breast cancer. The cells are breast cancer. They behave like breast cancer. And they will need to be treated like breast cancer. There's also this myth that treatment or primary the treatment for your primary cancer was somehow wrong or failed.
If you got metastatic breast cancer. This again, is absolute nonsense. Breast cancer can still spread even after successful treatment for a primary cancer. Even with the best treatments in the world, and it can lay dormant for years and years, particularly breast cancer. And this leads us to the other myth, the five year myth. We often count survival after primary diagnosis and treatment at five years. And I think sometimes, Mr. Betts, that creates this idea that if you get to five years and it's not come back, you're okay.
But sadly, that's not true. And it doesn't mean that it'll never come back. Breast cancer particularly, can come back up to 20 years, if not more, after primary diagnosis. My breast cancer came back ten years after my primary diagnosis. And I don't say this to terrify or scare people, but to say it is absolutely imperative that people are aware of the signs and the symptoms of secondary breast cancer to to be aware if they ever have them, no matter how long it is since their primary diagnosis, or indeed, if they've never had a primary diagnosis.
And I particularly like to put on record, um, my commendation and thanks to the work of Joe from meetup UK, who developed the infographic around, um, secondary breast cancer symptoms, which has been extremely useful, we've heard. About lobular breast cancer. And there's this idea that secondary breast cancer is one disease. Obviously it's not. There is ductal lobular metaplastic inflammatory. And then the whole other kind of subgroups hormone receptive, Her2 positive, Her2 negative, triple negative. And of course, the weird thing about cancer, Mr..
Is that it's not a disease that infects us. It's not something from outside that we pick up that we get. It's us. It's our own cells that change and do this to us. And so our cancer invariably is as unique as we are. There's also a myth, then, that all treatments will work for everybody. And if you have this kind of cancer, then this treatment will work. Unfortunately, sadly, that's not the case either, because we're all unique and one treatment that can be extremely effective for a person could have absolutely no impact on anybody, on somebody else.
And there's also this idea that treatment for metastatic breast cancer is more aggressive than that for primary cancer, it's actually often the opposite, because I cannot be cured. So what's the point of making me so sick I can't get out of bed for six months?The point of treatment is to keep the cancer at bay, to hold it back, to allow me to continue to do this work, to allow me to live my life, not necessarily to cure me. But then there's also this myth that metastatic breast cancer means you're going to die soon.
Um. I had some. Absolutely terrible comments when I went public with my disease. One particularly lovely person on Facebook said, oh, there'll be a byelection soon. Oh, she's going to be dead. I mean, that was like two years ago. Um, but not necessarily. It's treatable, but again, it's not curable. Our treatments are there to hold it at bay, hold it back to treat pain, to treat side effects. Sometimes we might even get the the holy grail of no evidence of disease, which is, you know, what everybody hopes for.
But that doesn't mean to say you're necessarily cancer free, because we know that it lies dormant and we can't necessarily see it. So we know what it is. So what are we going to do about it?And again, and some of these things have been raised already, these things have been mentioned. Um, the National Cancer Plan, which I, as the minister at the time, was absolutely delighted to lead on and launch earlier this year, is perhaps the first national cancer plan that does not have metastatic disease as a brief mention, but has got it really at the very heart of the plan.
And I'm really pleased about that because it has not been forgotten about. It is in the plan. And the number one thing that I wanted to make sure was in that plan is that we count, and this has been touched on before, we estimate 61000 people have got metastatic breast cancer. But really, we haven't got a clue. We've got some good data for de Novo where it's diagnosed initially. But for people like me who are diagnosed ten, 12, 20 years later, we don't really know.
And without that, we can't build the services. We can't estimate demand. And the fundamental truth is, if I am not counted, I do not count. We must start this. The cancer plan commits to counting metastatic disease properly, starting with breast cancer. So I asked the minister what progress has been made and will she set a deadline for trusts to report?It is literally just counting research lines of treatment. So we all have these treatments and some of them work and some of them don't.
And basically you try them and if they work, you stay on them until they stop working or they make you so ill you can't carry on. And then you try another one. It's literally a process of trial and error, and you keep going until you run out of options, which. Means that without access to new drugs, without trials, we will run out of options sooner rather than later. And when we run out of options, we die. The cancer plan committed to develop world class cancer care through world class research.
So I'll ask the minister what progress has been made, particularly to establish the Cancer Trials Accelerator by next year, 2027 and. Then when we do develop those drugs, we need to know that we get them changes to nice criteria, name. The severity modifier has been touched upon. So again, I'll ask the Minister to respond on what developments are made on that. Will she explore those. Because access to drugs and research makes it possible for me and others like me to see our children grow, to meet our grandchildren, to bury our parents, not the other way round.
Lives with metastatic breast cancer matter to thank you.
That's a new one on me. Distant metastasis spread. Lots of words that all mean the same thing, which is an incurable breast cancer. Also, for completeness, there's a new relatively new term called oligometastatic, which is, um, very small or very few metastases. And there is a school of thought that this may be curable, but the jury is still out on that. So we'll stick with the terms that we've got. But there's some other words that also describe secondary breast cancer.
Words like devastating, terrifying, overwhelming, horrifying, desperate, anger, resentment, and fear. Words that I know I have certainly felt. And this debate calls it secondary breast cancer. And I think it's really important that we just get it right, because I have heard many, many people think that secondary breast cancer means you've got breast cancer for the second time. It doesn't. Um, let me be really clear about that. Secondary breast cancer is, as we've heard, about a breast cancer that has spread outside the breast tissue and is now incurable.
And it can be something that can be diagnosed after a primary diagnosis, a primary diagnosis, being a breast cancer that's potentially curable, or when you are first diagnosed with breast cancer, it could be secondary, which is called a de novo diagnosis. So that's what secondary breast cancer is. And as we've heard, I, I have it along with many, many other people. And I wanted to take the opportunity to talk about some of the myths around breast cancer. And colleagues in the debate have already spoken.
Um, really, really well about some of the issues and concerns and, and the politics and the policies involved. But I wanted to sort of really kind of talk about the reality and some of the myths about secondary breast cancer. And the big myth for many people is that it is curable. And I mean, the number of people who very, very well meaningly have said to me, oh, how long will you be on treatment?I will be on treatment until I die. I hope you make a full recovery.
I'm not going to be making a recovery. And my favourite, which and I know people mean well, but if anyone can beat this, you can. And I know people. Meanwhile, when they say this. But the truth is I cannot beat it. I will always be in treatment and I will not recover. And that sounds like, you know, it is absolutely terrifying. But we have to be honest about this. If we are not honest and grasp the nettle about this disease, we cannot truly tackle it.
There's also some other myths about breast cancer that when it spreads, it's a new cancer. So if you have breast cancer and then you have the cancer in your bones, that's not bone cancer. It is breast cancer in your bones. It looks like breast cancer. The cells are breast cancer. They behave like breast cancer. And they will need to be treated like breast cancer. There's also this myth that treatment or primary the treatment for your primary cancer was somehow wrong or failed.
If you got metastatic breast cancer. This again, is absolute nonsense. Breast cancer can still spread even after successful treatment for a primary cancer. Even with the best treatments in the world, and it can lay dormant for years and years, particularly breast cancer. And this leads us to the other myth, the five year myth. We often count survival after primary diagnosis and treatment at five years. And I think sometimes, Mr. Betts, that creates this idea that if you get to five years and it's not come back, you're okay.
But sadly, that's not true. And it doesn't mean that it'll never come back. Breast cancer particularly, can come back up to 20 years, if not more, after primary diagnosis. My breast cancer came back ten years after my primary diagnosis. And I don't say this to terrify or scare people, but to say it is absolutely imperative that people are aware of the signs and the symptoms of secondary breast cancer to to be aware if they ever have them, no matter how long it is since their primary diagnosis, or indeed, if they've never had a primary diagnosis.
And I particularly like to put on record, um, my commendation and thanks to the work of Joe from meetup UK, who developed the infographic around, um, secondary breast cancer symptoms, which has been extremely useful, we've heard. About lobular breast cancer. And there's this idea that secondary breast cancer is one disease. Obviously it's not. There is ductal lobular metaplastic inflammatory. And then the whole other kind of subgroups hormone receptive, Her2 positive, Her2 negative, triple negative. And of course, the weird thing about cancer, Mr..
Is that it's not a disease that infects us. It's not something from outside that we pick up that we get. It's us. It's our own cells that change and do this to us. And so our cancer invariably is as unique as we are. There's also a myth, then, that all treatments will work for everybody. And if you have this kind of cancer, then this treatment will work. Unfortunately, sadly, that's not the case either, because we're all unique and one treatment that can be extremely effective for a person could have absolutely no impact on anybody, on somebody else.
And there's also this idea that treatment for metastatic breast cancer is more aggressive than that for primary cancer, it's actually often the opposite, because I cannot be cured. So what's the point of making me so sick I can't get out of bed for six months?The point of treatment is to keep the cancer at bay, to hold it back, to allow me to continue to do this work, to allow me to live my life, not necessarily to cure me. But then there's also this myth that metastatic breast cancer means you're going to die soon.
Um. I had some. Absolutely terrible comments when I went public with my disease. One particularly lovely person on Facebook said, oh, there'll be a byelection soon. Oh, she's going to be dead. I mean, that was like two years ago. Um, but not necessarily. It's treatable, but again, it's not curable. Our treatments are there to hold it at bay, hold it back to treat pain, to treat side effects. Sometimes we might even get the the holy grail of no evidence of disease, which is, you know, what everybody hopes for.
But that doesn't mean to say you're necessarily cancer free, because we know that it lies dormant and we can't necessarily see it. So we know what it is. So what are we going to do about it?And again, and some of these things have been raised already, these things have been mentioned. Um, the National Cancer Plan, which I, as the minister at the time, was absolutely delighted to lead on and launch earlier this year, is perhaps the first national cancer plan that does not have metastatic disease as a brief mention, but has got it really at the very heart of the plan.
And I'm really pleased about that because it has not been forgotten about. It is in the plan. And the number one thing that I wanted to make sure was in that plan is that we count, and this has been touched on before, we estimate 61000 people have got metastatic breast cancer. But really, we haven't got a clue. We've got some good data for de Novo where it's diagnosed initially. But for people like me who are diagnosed ten, 12, 20 years later, we don't really know.
And without that, we can't build the services. We can't estimate demand. And the fundamental truth is, if I am not counted, I do not count. We must start this. The cancer plan commits to counting metastatic disease properly, starting with breast cancer. So I asked the minister what progress has been made and will she set a deadline for trusts to report?It is literally just counting research lines of treatment. So we all have these treatments and some of them work and some of them don't.
And basically you try them and if they work, you stay on them until they stop working or they make you so ill you can't carry on. And then you try another one. It's literally a process of trial and error, and you keep going until you run out of options, which. Means that without access to new drugs, without trials, we will run out of options sooner rather than later. And when we run out of options, we die. The cancer plan committed to develop world class cancer care through world class research.
So I'll ask the minister what progress has been made, particularly to establish the Cancer Trials Accelerator by next year, 2027 and. Then when we do develop those drugs, we need to know that we get them changes to nice criteria, name. The severity modifier has been touched upon. So again, I'll ask the Minister to respond on what developments are made on that. Will she explore those. Because access to drugs and research makes it possible for me and others like me to see our children grow, to meet our grandchildren, to bury our parents, not the other way round.
Lives with metastatic breast cancer matter to thank you.
15:47
Speaker 8
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Speaker 8
A pleasure to serve on your chairship. Uh, a big thank you to the honourable members for Wokingham and Durham for calling attention to this disease. And can I thank the Honourable Lady for West Lancashire for, uh, for. Embodying. The spirit and the courage that the honourable lady has, uh. It always touches me and makes me, uh, quite proud of her. And I want to say that on record. Thank you very much. Lobular cancer.
Um, we had a meeting with the minister, Mike Nesbitt, H. Minister. Northern Ireland some 4 or 5 weeks ago, along with the Honourable Lady for Fermanagh and South Tyrone. Uh, some local ladies, uh, to discuss the issue of lobular cancer. Um, and remember the name of the, the last name of the guy Tristan, was his first name. I can't remember his last name for a. Lorraine, thank you very much. There. Thank the member for that intervention to remind me.
Um, the, the, uh, it was an important meeting because. Those ladies around that table. Were ladies like the Honourable Lady for West Lancashire. They were ladies who were, had cancer and were living with it and were trying to deal with it. Uh, and, uh, it really touched home to me. Uh, the stories, uh, and the personal stories because almost every one of them ladies had children. One lady had four young children. And, and I was moved by, by her contribution and, and very touched by the, the fact of, of, of the life that she was leaving with four young children each month in the UK, around 1000 people die from secondary breast cancer.
This equates to one life every 45 minutes, one life every 45 minutes. Wow. These stats paint a harrowing picture of the devastating impact that secondary breast cancer has on many individuals and their families. Although the cancer is not curable, as has been metastasized, it is treatable and can often be managed. On average, patients can survive two three years or more after diagnosis. Symptoms can be relieved. Patients quality of life can be maintained and with many leading um and inverted commas, a normal life in 2020 for secondary breast cancer was deemed moderately severe, meaning funding would not be granted in Wales, England and Northern Ireland.
So my my request will be, uh, that, uh, that that we have the access to the licence and Her2 drug used to slow the cancer's progression, maintaining quality of life for patients and. Indeed, Mr. Chairman, incredibly difficult to justify a system in which patients in Scotland are more than 20 other European countries can access this treatment, while eligible patients in England, Wales and Northern Ireland cannot. It just doesn't make sense. Mental health supports should also be invested in across the United Kingdom to ensure that patients and their families receive emotional support to help them cope.
And despite, uh, secondary breast cancer being the leading cause of death for the United Kingdom of Great Britain and Northern Ireland, uh, women under 60, over 40% of British adults have not heard of the disease. So there's a lot of awareness. Was, um, the ladies who we met that day was the minister of Northern Ireland. Uh, it was quite amazing to know that some of them ladies, uh, when they thought they were, they were, they were cured, found out they weren't because, uh, the full diagnosis hadn't been done.
And the Lobular cancer moonshot, um, that the honourable gentleman, uh, is very much knowledgeable, knowledgeable of and spoke about that, that there needs to be more done. And I'm going to speak about that as well as estimated that some 36% cannot name any signs or symptoms of the cancer. These figures show there's much work to be done to ensure individuals are informed and that rapidly access treatment as a result of early diagnosis. We can, however, only inform the public of what we know. Advancements must be made to invest in further research to deepen healthcare professionals understanding of the disease and change the prognosis of the disease from a death sentence.
Charities such as breast cancer have, uh, breast cancer now have already awarded over some £300,000 to researchers at Queen's University in Belfast to support an investigation into the inequalities of people living with this disease. Again, my ask of the minister, I'm very pleased to see the minister in replacing and the Minister encourages us, uh, with her interest and compassion for this subject matter. And I know the minister will give us some idea what they've been done in Queen's University Belfast and the trials that are taking place, uh, there.
We're not that far from from finding the cure from from raising the awareness in the way that it should be to trying to save lives and give people hope for the future long beyond the the times that have been allocated, so has the minister's department had an opportunity to talk to Queen's University in Belfast to see what they're doing?How's. The Minister had a chance to talk to the. Mike Nesbitt, the Minister in Northern Ireland Assembly again to um support the. Delegation and the inequality of people living with this disease.
The study will consider factors including education, income, disability and mental health. And you know, we always say that it's the truth, but it's not just the ladies who suffer, the family suffer, the children suffer. Uh, the in-laws suffer because they're all very, very conscious and aware of what's happening to determine how inequalities influence people, patients, access to care, treatment outcomes, and the overall quality of life. Would the government consider supporting this research at Queen's University so that everyone across the United Kingdom living with the disease, is given a fair chance to access to effective care?Party's health spokesperson and representative from Northern Ireland, I'd like to draw attention to the long wait times for cancer referrals in comparison to the rest of the United Kingdom from July to September 2025.
Urgent breast cancer referrals in particular, saw long delays, with just 6.8% seen within the 14 day target, and over the same time, the HSC trust received over 6000 referrals for suspected breast cancer, 86% of which were marked as urgent, 86% marked as urgent. And the response not done with approximately 1000 living in Northern Ireland with the disease, I must draw attention to the increased risk of women in Northern Ireland experiencing delays in diagnosis. Diagnosis and also access to treatment. I conclude with this cancer treatment should not be a postcode lottery.
Advances in treatment mean more people can now live longer and maintain a good quality of life. With secondary breast cancer. And while the disease remains incurable, everyone across the United Kingdom of Great Britain and Northern Ireland should have an equal access to treatment and the support that they need. And I join with members, those who have spoken and those who have spoke shortly with members in looking to the minister and simply asking for more, more screenings, more funding and more saving of lives.
Um, we had a meeting with the minister, Mike Nesbitt, H. Minister. Northern Ireland some 4 or 5 weeks ago, along with the Honourable Lady for Fermanagh and South Tyrone. Uh, some local ladies, uh, to discuss the issue of lobular cancer. Um, and remember the name of the, the last name of the guy Tristan, was his first name. I can't remember his last name for a. Lorraine, thank you very much. There. Thank the member for that intervention to remind me.
Um, the, the, uh, it was an important meeting because. Those ladies around that table. Were ladies like the Honourable Lady for West Lancashire. They were ladies who were, had cancer and were living with it and were trying to deal with it. Uh, and, uh, it really touched home to me. Uh, the stories, uh, and the personal stories because almost every one of them ladies had children. One lady had four young children. And, and I was moved by, by her contribution and, and very touched by the, the fact of, of, of the life that she was leaving with four young children each month in the UK, around 1000 people die from secondary breast cancer.
This equates to one life every 45 minutes, one life every 45 minutes. Wow. These stats paint a harrowing picture of the devastating impact that secondary breast cancer has on many individuals and their families. Although the cancer is not curable, as has been metastasized, it is treatable and can often be managed. On average, patients can survive two three years or more after diagnosis. Symptoms can be relieved. Patients quality of life can be maintained and with many leading um and inverted commas, a normal life in 2020 for secondary breast cancer was deemed moderately severe, meaning funding would not be granted in Wales, England and Northern Ireland.
So my my request will be, uh, that, uh, that that we have the access to the licence and Her2 drug used to slow the cancer's progression, maintaining quality of life for patients and. Indeed, Mr. Chairman, incredibly difficult to justify a system in which patients in Scotland are more than 20 other European countries can access this treatment, while eligible patients in England, Wales and Northern Ireland cannot. It just doesn't make sense. Mental health supports should also be invested in across the United Kingdom to ensure that patients and their families receive emotional support to help them cope.
And despite, uh, secondary breast cancer being the leading cause of death for the United Kingdom of Great Britain and Northern Ireland, uh, women under 60, over 40% of British adults have not heard of the disease. So there's a lot of awareness. Was, um, the ladies who we met that day was the minister of Northern Ireland. Uh, it was quite amazing to know that some of them ladies, uh, when they thought they were, they were, they were cured, found out they weren't because, uh, the full diagnosis hadn't been done.
And the Lobular cancer moonshot, um, that the honourable gentleman, uh, is very much knowledgeable, knowledgeable of and spoke about that, that there needs to be more done. And I'm going to speak about that as well as estimated that some 36% cannot name any signs or symptoms of the cancer. These figures show there's much work to be done to ensure individuals are informed and that rapidly access treatment as a result of early diagnosis. We can, however, only inform the public of what we know. Advancements must be made to invest in further research to deepen healthcare professionals understanding of the disease and change the prognosis of the disease from a death sentence.
Charities such as breast cancer have, uh, breast cancer now have already awarded over some £300,000 to researchers at Queen's University in Belfast to support an investigation into the inequalities of people living with this disease. Again, my ask of the minister, I'm very pleased to see the minister in replacing and the Minister encourages us, uh, with her interest and compassion for this subject matter. And I know the minister will give us some idea what they've been done in Queen's University Belfast and the trials that are taking place, uh, there.
We're not that far from from finding the cure from from raising the awareness in the way that it should be to trying to save lives and give people hope for the future long beyond the the times that have been allocated, so has the minister's department had an opportunity to talk to Queen's University in Belfast to see what they're doing?How's. The Minister had a chance to talk to the. Mike Nesbitt, the Minister in Northern Ireland Assembly again to um support the. Delegation and the inequality of people living with this disease.
The study will consider factors including education, income, disability and mental health. And you know, we always say that it's the truth, but it's not just the ladies who suffer, the family suffer, the children suffer. Uh, the in-laws suffer because they're all very, very conscious and aware of what's happening to determine how inequalities influence people, patients, access to care, treatment outcomes, and the overall quality of life. Would the government consider supporting this research at Queen's University so that everyone across the United Kingdom living with the disease, is given a fair chance to access to effective care?Party's health spokesperson and representative from Northern Ireland, I'd like to draw attention to the long wait times for cancer referrals in comparison to the rest of the United Kingdom from July to September 2025.
Urgent breast cancer referrals in particular, saw long delays, with just 6.8% seen within the 14 day target, and over the same time, the HSC trust received over 6000 referrals for suspected breast cancer, 86% of which were marked as urgent, 86% marked as urgent. And the response not done with approximately 1000 living in Northern Ireland with the disease, I must draw attention to the increased risk of women in Northern Ireland experiencing delays in diagnosis. Diagnosis and also access to treatment. I conclude with this cancer treatment should not be a postcode lottery.
Advances in treatment mean more people can now live longer and maintain a good quality of life. With secondary breast cancer. And while the disease remains incurable, everyone across the United Kingdom of Great Britain and Northern Ireland should have an equal access to treatment and the support that they need. And I join with members, those who have spoken and those who have spoke shortly with members in looking to the minister and simply asking for more, more screenings, more funding and more saving of lives.
15:54
Speaker 4
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Speaker 4
Then, um, for when the chair. Just say the honourable gentleman has indicated to me that he has to leave about 4:15. He has a plane to catch. And I do accept that as a reason. And he's given advance notice, which I thank him for. Uh, Wendy Chamberlain, if we could make sure we get to the wind ups by five past the latest.
15:54
Speaker 17
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Speaker 17
Repeats. It's a pleasure to serve under your chairmanship. I just want to start by saying that there are some people, both within this place and outwith, who say that politicians or don't are out of touch, don't care, and don't bring their lived experience to the chamber. And I just want to start by thanking the honourable member for West Lancashire for everything she did in her role as health Minister, but for her very powerful speech that she gave today, it should be essential watching for those who say otherwise about politicians intentions in this place, and I want to congratulate both the honourable member for the City of Durham and my honourable friend from Wokingham for securing this debate and also telling their own cancer experiences.
And myself, like most members, I have been impacted by breast cancer in that my mother is a survivor and she was diagnosed when I was away from home for the first time at university, so I know how difficult it was for the family at that time. Receiving that diagnosis and knowing that my mum was going through treatment while I was far away from home. Very pleased to say that she is still with us. And today one of my colleagues and friends in the Liberal Democrats in North East Fife, Councillor Fiona Core, is currently stable and after undergoing treatment for lobular breast cancer, she messaged me today to say she started her new meds yesterday.
But I do want to note that it's only two years after her daughter's leukaemia fight. This is a woman and a family who have been through a lot, and because of Fiona's diagnosis, that did bring me to speak to the Lobular Breast Cancer campaign. And I do want to, like others, focus my remarks on that cancer in particular. And I think part of that is because in relation to secondary breast cancer, the topic of this debate, the unmet clinical need of lobular breast cancer, means that the chances of it spreading are incredibly high.
And for many that have been diagnosed, it has already spread by the time of their diagnosis. It is important to note, Mr. Bates, that this year will mark 50 years since doctors first knew that lobular breast cancer was its own distinct condition. I wasn't born yet, just. We did not yet have Sony Walkmans, Walkmans, personal computers or mobile phones don't go breaking. My heart was number one for six weeks. Rocky won Best Picture. I know it's been a long time since Scotland were in the World Cup, but chair, this really was a long time ago.
And here we are 50 years later and a world with advances that were unimaginable back then. But we have painfully little progress on the diagnosis and treatment of lobular breast cancer, and as others have referenced, it is not like what we think breast cancer is. As a woman, I've been taught to check for lumps. Obviously, my mother's experience made that more acute, but lobular cells grow in single lines that spread out over tissue. If you did a lump check today, the chances are you wouldn't spot it.
And even more worryingly, if you go for a mammogram, it probably won't show up there either. And as others have referenced, 22 people are diagnosed with lobular breast cancer every day. But the reality is, as many have talked about already, we do not know how many people might be living with the disease getting progressively more ill without treatment. As of today, we still understand very little about it and there are no dedicated treatments for it. I am conscious that health is devolved.
I am standing here as a Scottish MP, but given the Minister's responsibilities, I will note that the government's recent Cancer Action Plan for England did not mention lobular breast cancer. And I know we can say that other treatments are available. And obviously Fiona and others are taking other treatments. But the reality is as they are hit and miss, I have engaged with the Lobular moonshot project and indeed the honourable member for Horsham, my honourable friend, constituent Tristan, and the story of his wife, Susan.
She had eight different generic breast cancer treatments, none of which worked. And this lack of treatment, frankly kills people. And that is why lobular breast cancer is so relevant to a debate on secondary breast cancer, because not enough people know what to look for because it does not show up on tests, because it is therefore undiagnosed late. And when it is diagnosed, there is not a dedicated treatment pathway for it. It's a recipe for cancer spreading. And we have heard, as I say, very powerful.
Honourable member for West Lancashire, what that diagnosis of secondary breast cancer means. Unsurprisingly, there is still a lot we do not know about what happens when the cancer does spread. We do know that it can spread to areas other cancers don't like to, such as the outside membrane of the spine. We also know that the cells can lay there dormant for years before starting to spread again. And what we do not know is why any of this happens, how it can be identified or indeed how it could be stopped.
But Mr. Betts, there could be hope. There are researchers around this country, as others have referenced, ready to take on this challenge. Importantly, there is cross-party support for getting this done. It is probably one of the most bipartisan campaigns in the history of this place. I know that the Liberal Democrats are behind it. Our leader, my friend, the right hon. Member for Kingston and Surbiton, asked the Prime Minister about funding last summer, and indeed, I asked the then Secretary of State for health just recently about the project.
He suggested then that the money was there to fund the project, but that work was needed on the programme of research. And I would say to the minister that that is not how those involved with the project see it. This is a campaign that almost every opposition MP supports, as well as huge numbers of those in the governing Labour Party. And outwith this place, 84% of Labour voters in 2024 want lobular breast cancer research to be funded, as others have said, £20 million over a five year settlement that is £238 per person diagnosed over the next ten years.
And whilst I do not believe life changing research should be about a cost benefit analysis, £238 is nothing compared with the costs of patients being out of the labour market, being treated over years with the wrong thing successfully or not. And I also want to mention that I know the Lobular moonshot project is calling on devolved governments to step up as well, and to provide £1 million of treatment per year for research to be carried out in their own countries. The honourable member for Strangford referenced that too, and I do call on the Scottish Government, the new Scottish Government and the new Cabinet Secretary for health to look at this ask incredibly seriously, and I am sure the Minister is going to point out the current Nir funding round.
I do not want to pre-empt that. It is, of course, important, but it is not the same funding as is needed for the moonshot project. That funding is available for research on the underlying biology of lobular breast cancer. The research from that funding will still remain weak until we know what it is we are trying to treat, we need funding of the actual underlying biology so that lobular breast cancer can be identified and diagnosed and treated. This will improve outcomes drastically, including reducing the number of people with secondary breast cancer.
The topic of today's debate. I just want to conclude by saying my hon. Friend the member for Wokingham has demonstrated very visibly that breast cancer is not simply a female issue, and I want to end on reflecting that anyone can get cancer. And for many, they will make full recoveries. For some, it is something that they will live with for the remainder of their life, but it will not be the condition from which they die. But what we have heard today is for secondary breast cancer.
It will be decisive in terms of their life expectancy. We must let those people know, let these women and men know that they are not alone. Thank you.
And myself, like most members, I have been impacted by breast cancer in that my mother is a survivor and she was diagnosed when I was away from home for the first time at university, so I know how difficult it was for the family at that time. Receiving that diagnosis and knowing that my mum was going through treatment while I was far away from home. Very pleased to say that she is still with us. And today one of my colleagues and friends in the Liberal Democrats in North East Fife, Councillor Fiona Core, is currently stable and after undergoing treatment for lobular breast cancer, she messaged me today to say she started her new meds yesterday.
But I do want to note that it's only two years after her daughter's leukaemia fight. This is a woman and a family who have been through a lot, and because of Fiona's diagnosis, that did bring me to speak to the Lobular Breast Cancer campaign. And I do want to, like others, focus my remarks on that cancer in particular. And I think part of that is because in relation to secondary breast cancer, the topic of this debate, the unmet clinical need of lobular breast cancer, means that the chances of it spreading are incredibly high.
And for many that have been diagnosed, it has already spread by the time of their diagnosis. It is important to note, Mr. Bates, that this year will mark 50 years since doctors first knew that lobular breast cancer was its own distinct condition. I wasn't born yet, just. We did not yet have Sony Walkmans, Walkmans, personal computers or mobile phones don't go breaking. My heart was number one for six weeks. Rocky won Best Picture. I know it's been a long time since Scotland were in the World Cup, but chair, this really was a long time ago.
And here we are 50 years later and a world with advances that were unimaginable back then. But we have painfully little progress on the diagnosis and treatment of lobular breast cancer, and as others have referenced, it is not like what we think breast cancer is. As a woman, I've been taught to check for lumps. Obviously, my mother's experience made that more acute, but lobular cells grow in single lines that spread out over tissue. If you did a lump check today, the chances are you wouldn't spot it.
And even more worryingly, if you go for a mammogram, it probably won't show up there either. And as others have referenced, 22 people are diagnosed with lobular breast cancer every day. But the reality is, as many have talked about already, we do not know how many people might be living with the disease getting progressively more ill without treatment. As of today, we still understand very little about it and there are no dedicated treatments for it. I am conscious that health is devolved.
I am standing here as a Scottish MP, but given the Minister's responsibilities, I will note that the government's recent Cancer Action Plan for England did not mention lobular breast cancer. And I know we can say that other treatments are available. And obviously Fiona and others are taking other treatments. But the reality is as they are hit and miss, I have engaged with the Lobular moonshot project and indeed the honourable member for Horsham, my honourable friend, constituent Tristan, and the story of his wife, Susan.
She had eight different generic breast cancer treatments, none of which worked. And this lack of treatment, frankly kills people. And that is why lobular breast cancer is so relevant to a debate on secondary breast cancer, because not enough people know what to look for because it does not show up on tests, because it is therefore undiagnosed late. And when it is diagnosed, there is not a dedicated treatment pathway for it. It's a recipe for cancer spreading. And we have heard, as I say, very powerful.
Honourable member for West Lancashire, what that diagnosis of secondary breast cancer means. Unsurprisingly, there is still a lot we do not know about what happens when the cancer does spread. We do know that it can spread to areas other cancers don't like to, such as the outside membrane of the spine. We also know that the cells can lay there dormant for years before starting to spread again. And what we do not know is why any of this happens, how it can be identified or indeed how it could be stopped.
But Mr. Betts, there could be hope. There are researchers around this country, as others have referenced, ready to take on this challenge. Importantly, there is cross-party support for getting this done. It is probably one of the most bipartisan campaigns in the history of this place. I know that the Liberal Democrats are behind it. Our leader, my friend, the right hon. Member for Kingston and Surbiton, asked the Prime Minister about funding last summer, and indeed, I asked the then Secretary of State for health just recently about the project.
He suggested then that the money was there to fund the project, but that work was needed on the programme of research. And I would say to the minister that that is not how those involved with the project see it. This is a campaign that almost every opposition MP supports, as well as huge numbers of those in the governing Labour Party. And outwith this place, 84% of Labour voters in 2024 want lobular breast cancer research to be funded, as others have said, £20 million over a five year settlement that is £238 per person diagnosed over the next ten years.
And whilst I do not believe life changing research should be about a cost benefit analysis, £238 is nothing compared with the costs of patients being out of the labour market, being treated over years with the wrong thing successfully or not. And I also want to mention that I know the Lobular moonshot project is calling on devolved governments to step up as well, and to provide £1 million of treatment per year for research to be carried out in their own countries. The honourable member for Strangford referenced that too, and I do call on the Scottish Government, the new Scottish Government and the new Cabinet Secretary for health to look at this ask incredibly seriously, and I am sure the Minister is going to point out the current Nir funding round.
I do not want to pre-empt that. It is, of course, important, but it is not the same funding as is needed for the moonshot project. That funding is available for research on the underlying biology of lobular breast cancer. The research from that funding will still remain weak until we know what it is we are trying to treat, we need funding of the actual underlying biology so that lobular breast cancer can be identified and diagnosed and treated. This will improve outcomes drastically, including reducing the number of people with secondary breast cancer.
The topic of today's debate. I just want to conclude by saying my hon. Friend the member for Wokingham has demonstrated very visibly that breast cancer is not simply a female issue, and I want to end on reflecting that anyone can get cancer. And for many, they will make full recoveries. For some, it is something that they will live with for the remainder of their life, but it will not be the condition from which they die. But what we have heard today is for secondary breast cancer.
It will be decisive in terms of their life expectancy. We must let those people know, let these women and men know that they are not alone. Thank you.
16:01
16:02
Speaker 18
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Speaker 18
And it's a pleasure to serve under your chairmanship, Mr. Betts, and I thank my hon. Friend the member for Wokingham and the member for the City of Durham for securing this important debate, and for both of them for sharing their experience with cancer, and also for the member for West Lancashire, for her frankness and openness in describing her own experience. Secondary breast cancer is now the leading cause of death in the UK for women between the ages of 40 and 49, and each month around 1000 people lose their lives to secondary breast cancer.
This equates to one person every 45 minutes. Two lives will be lost to this disease. In the short span of this debate, secondary breast cancer is incurable. Treatment can only slow down the disease, but not cure it. Nevertheless, 13 years after data collection on secondary breast cancer became mandatory for all NHS trusts, the true number of people living with this disease remains unknown. Estimates place the number around 61,000. This lack of accurate data makes thousands of people in need invisible to the healthcare system.
This is simply unacceptable. They count and we must count them. Collecting and publishing this data is essential. Without this knowledge, how can the NHS accurately assess the scale of need and appropriately plan services to ensure support is available where required?The government's commitment within the National Cancer Plan to define and count all secondary cancers, beginning with breast cancer, as well as the target to meet all cancer wait time standards by 2029 is a step in the right direction. But to achieve these ambitions in full, we must be bolder and do so much more.
The Liberal Democrats are clear quality and speed of treatment are vital to increasing the survival rates of secondary breast cancer. The research, conducted by Breast Cancer Now in 2019, is damning. It makes the lack of quality and speed of care undeniable. 23% of respondents had to see their GP three or more times before they were diagnosed, and 53% of them said they had not been given enough information about clinical trials by healthcare professionals. Just 30% of them said they saw a cancer nurse specialist regularly, and only 13% of respondents who previously had breast cancer felt they were given enough information to recognise the signs and symptoms of secondary breast cancer.
These figures show a healthcare system that is creaking under the strain of years of neglect by the previous conservative government. It highlights professionals lacking the time and capacity to effectively diagnose, offer, follow up care and share sufficient information for which patients ultimately pay the price. Every patient must get the care and support they need when they need it, where they need it. We must support the specialist cancer workforce, as well as GPS, to deliver the standard of care they would like, and we expect.
I therefore, urge the Minister to take forward the Liberal Democrats proposal to introduce a guarantee that 100% of patients will be able to start treatment within 62 days from urgent referral to recruit more cancer nurses, so that every patient has a dedicated specialist supporting them throughout their treatment to expand the medicines and Healthcare products regulatory agencies capacity to halve the time for new treatments to reach the patients who desperately need them to end with. I think of the two people who, in the 90 minutes of this debate, will have lost their lives to secondary breast cancer for them and all the secondary breast cancer patients past, present and future.
I implore the minister to consider many of the calls raised by myself and my colleagues here today. Thank you.
This equates to one person every 45 minutes. Two lives will be lost to this disease. In the short span of this debate, secondary breast cancer is incurable. Treatment can only slow down the disease, but not cure it. Nevertheless, 13 years after data collection on secondary breast cancer became mandatory for all NHS trusts, the true number of people living with this disease remains unknown. Estimates place the number around 61,000. This lack of accurate data makes thousands of people in need invisible to the healthcare system.
This is simply unacceptable. They count and we must count them. Collecting and publishing this data is essential. Without this knowledge, how can the NHS accurately assess the scale of need and appropriately plan services to ensure support is available where required?The government's commitment within the National Cancer Plan to define and count all secondary cancers, beginning with breast cancer, as well as the target to meet all cancer wait time standards by 2029 is a step in the right direction. But to achieve these ambitions in full, we must be bolder and do so much more.
The Liberal Democrats are clear quality and speed of treatment are vital to increasing the survival rates of secondary breast cancer. The research, conducted by Breast Cancer Now in 2019, is damning. It makes the lack of quality and speed of care undeniable. 23% of respondents had to see their GP three or more times before they were diagnosed, and 53% of them said they had not been given enough information about clinical trials by healthcare professionals. Just 30% of them said they saw a cancer nurse specialist regularly, and only 13% of respondents who previously had breast cancer felt they were given enough information to recognise the signs and symptoms of secondary breast cancer.
These figures show a healthcare system that is creaking under the strain of years of neglect by the previous conservative government. It highlights professionals lacking the time and capacity to effectively diagnose, offer, follow up care and share sufficient information for which patients ultimately pay the price. Every patient must get the care and support they need when they need it, where they need it. We must support the specialist cancer workforce, as well as GPS, to deliver the standard of care they would like, and we expect.
I therefore, urge the Minister to take forward the Liberal Democrats proposal to introduce a guarantee that 100% of patients will be able to start treatment within 62 days from urgent referral to recruit more cancer nurses, so that every patient has a dedicated specialist supporting them throughout their treatment to expand the medicines and Healthcare products regulatory agencies capacity to halve the time for new treatments to reach the patients who desperately need them to end with. I think of the two people who, in the 90 minutes of this debate, will have lost their lives to secondary breast cancer for them and all the secondary breast cancer patients past, present and future.
I implore the minister to consider many of the calls raised by myself and my colleagues here today. Thank you.
16:05
16:05
Speaker 19
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Speaker 19
Thank you. Thank you, chair, and it's a pleasure to serve under your chairmanship this afternoon. I'd like to congratulate the honourable members for Wokingham and the City of Durham on securing this debate today, which I know is extremely personal to both of them. I'd also like to congratulate the honourable member for West Lancashire on her speech. It's quite common in this place for people to say the Honourable Lady or the honourable gentleman has given an extremely powerful speech, but that was an extremely powerful speech and I was moved, moved by it, and I'm moved in great admiration of her courage and her frankness in the way she speaks in this house about her, um, her illness.
Um, I was also fortunate early enough in, in earlier in the week to be in a roundtable discussion with the honourable member for Wokingham and others with a round table with the New Statesman about the cancer plan, which again, I found very insightful and thought provoking, like the contributions we've had today in the chamber as. Has been said for many people, primary breast cancer does never come back after treatment and treatment for primary breast cancer has significantly improved. But sometimes the cancer cells do spread to other parts of the body.
Commonly, the bones, lungs, liver, brain or skin. And that, as we've heard today, is what's called secondary or metastatic breast cancer. And as we've heard, the best estimate we have is that there are around 61,000 people living with secondary breast cancer in the United Kingdom. But that statistic is uncertain. The data is unclear. And one of the things in the cancer plan was that the government would collect the data on secondary breast cancer from 2026. Now, we're almost halfway through 2026, and so I'd be grateful if the minister could provide an update on how that is going and when we would like, when we will see that data, and also with what regularity or frequency she expects to publish it.
Will it be published monthly, quarterly, every half year. Every year. What what is her plans on that?Um, and also she needs to be definition in order to do so. And I wonder if she's, um, settled on that to another thing in the cancer plan is screening and the desire to improve screening. And again, I commend the honourable lady from West Lancashire for her work on the cancer plan. Um, but there are women waiting in Lincolnshire um chair five weeks and more for referral to their appointment when they discover a breast lump.
And we know that the longer it takes for diagnosis, the more likely a metastasis is to occur. So could the minister expand a little on the detail of the promise to expand screening?What does it look like?What workforce will be necessary?When will that be in place?What?Mammography machines or ultrasound machines might be needed, and what plans are they to be bought and installed?And and how quickly does she expect that to happen?For those that need genetic testing, what plans has she got to expand the availability of genetic testing?And over what timescale?I think one of the concerns I have, chair, with the cancer plan is that it's very ambitious.
And so it should be, and I'm glad that it is. Um, it only works if it's delivered. And it was published four months ago, just over four months ago. And it's not clear what progress is being made or that the work is continuing at the pace it needs to, to deliver the ambitions within it that we all want to see achieved. And I'm concerned that one of the things that's slowing progress is the. Reorganisation of Icbs in response to the cutting of their budgets by 50%, and also the health Bill and the abolition of NHS England.
So the people that will be doing the organising and the planning um are organizing and planning something else. Some of them are leaving and we're losing expertise and some of them are being made redundant or leaving before they might get made redundant. And that in itself is causing disruption to the planning of the, of the, of our health services. And I wonder if the minister would be able to comment on that. Lobular health, lobular breast cancer, um as has been said before, has not seen the progress that other forms of breast cancer have in terms of the treatment over recent years.
And there was a moonshot project which was committed to by the previous conservative government of £20 million to look at research to try and really advance that particular form of cancer, which has, um, which needs a bit more attention in the research than it's had of late. And I wonder if the minister is able to tell us whether this government is committed to providing that money for that research. Hospices were mentioned. Hospices provide amazing services for people towards the end of their life. But we've heard in other debates in this chamber, Mr.
Betts, about how they are struggling. And one of the things they're struggling with is the national insurance costs they use. They do have a lot of staff because it's a very person delivered service. And so what that means is all of those members of staff accrue extra costs in terms of national insurance when they're employed by the hospices. And so we have heard of hospices struggling. And I appreciate the government has put a lot of money into hospices, but it's capital money which enables them to, you know, redecorate, build extra bits, provide extra equipment.
But that's that's lovely. But it's not helpful if there aren't the staff there to run the service and to provide the care that the patients so desperately need. And so I wonder what discussions the minister has had about the effects on hospices at the present time from National Insurance, whether she has considered an exemption, what her what her plans are to help support the hospice movement. The other thing I wanted to talk about was a phrase you used earlier on about run out of options.
What happens when you run out of options?Um, now as a doctor, I'm always told you never run out of treatments because palliative treatment is treatment. And even when you run out of treatments, you're still providing a treatment. But what happens when you run out of treatment that's active or likely to be successful in prolonging life or curing disease?And it's important that research is able to continue in. Research is really supported. So I look for the ministers, um, words on what what the government's doing to support research so that new drugs can come online and that the pathway we saw during the pandemic, how quickly the vaccines were brought through the pathway.
But what's gumming it up now?How do we speed it up so that people can get the drugs more quickly?And then what happens in that sort of gray zone between the drugs sort of available?And so going into trial, but it's not quite available yet. And we have the compassionate drugs scheme, and we had an urgent question in the main chamber on this this morning, chair. But the compassionate drug scheme is used where individuals have reached the end of the treatment options available, and they perhaps don't qualify for a trial in pediatrics.
That could be a few days in the age bracket, but they don't qualify for any trials either that are currently available. Perhaps the trials are full. They received a drug in a trial and the trial is finished. But we're still in negotiations about whether that drug is going to be received. What happens is that in some cases, the drug companies will provide those drugs to patients for free. Um, to help them. And unfortunately, towards the end of last year, chair, this government decided to charge VAT on the deemed value of these drugs, which means that they have to pay a charge, sometimes quite a significant charge to give these drugs to patients.
And what we've seen, chair, is that one company, one large pharmaceutical company, has pulled out of the compassionate drug scheme, which means that they're not available for people who need these drugs. This was raised by the honourable the Right Honourable member for Hornchurch and Upminster and the HMRC. Enforcement of this tax has been paused for review, but with the liabilities remaining. And so what's happening is we've got a situation where some drug companies are pulling out, others are considering their position. People with secondary breast cancer and other cancers and serious illnesses cannot wait for the budget.
In the autumn. They need the government to make a decision now to sort this problem out. Now, only last month, the government decided it was going to take VAT off rides at Alton Towers, which is great, but it means if they can do that, they can sort this out as well and they need to get on with it. So I asked the minister to please raise this with her colleagues in the Department of Health, raise this with the colleagues in the Treasury as well, and see what she can do to help people who really have no other option to keep that hope alive with those new and special drugs.
Um, so in summary, chair, the, the cancer plan is ambitious, which is great. It's got some great targets in it, which I hope they achieve, but we do need to see delivery. And I'm looking for the detail from the minister in how this plan will be delivered.
Um, I was also fortunate early enough in, in earlier in the week to be in a roundtable discussion with the honourable member for Wokingham and others with a round table with the New Statesman about the cancer plan, which again, I found very insightful and thought provoking, like the contributions we've had today in the chamber as. Has been said for many people, primary breast cancer does never come back after treatment and treatment for primary breast cancer has significantly improved. But sometimes the cancer cells do spread to other parts of the body.
Commonly, the bones, lungs, liver, brain or skin. And that, as we've heard today, is what's called secondary or metastatic breast cancer. And as we've heard, the best estimate we have is that there are around 61,000 people living with secondary breast cancer in the United Kingdom. But that statistic is uncertain. The data is unclear. And one of the things in the cancer plan was that the government would collect the data on secondary breast cancer from 2026. Now, we're almost halfway through 2026, and so I'd be grateful if the minister could provide an update on how that is going and when we would like, when we will see that data, and also with what regularity or frequency she expects to publish it.
Will it be published monthly, quarterly, every half year. Every year. What what is her plans on that?Um, and also she needs to be definition in order to do so. And I wonder if she's, um, settled on that to another thing in the cancer plan is screening and the desire to improve screening. And again, I commend the honourable lady from West Lancashire for her work on the cancer plan. Um, but there are women waiting in Lincolnshire um chair five weeks and more for referral to their appointment when they discover a breast lump.
And we know that the longer it takes for diagnosis, the more likely a metastasis is to occur. So could the minister expand a little on the detail of the promise to expand screening?What does it look like?What workforce will be necessary?When will that be in place?What?Mammography machines or ultrasound machines might be needed, and what plans are they to be bought and installed?And and how quickly does she expect that to happen?For those that need genetic testing, what plans has she got to expand the availability of genetic testing?And over what timescale?I think one of the concerns I have, chair, with the cancer plan is that it's very ambitious.
And so it should be, and I'm glad that it is. Um, it only works if it's delivered. And it was published four months ago, just over four months ago. And it's not clear what progress is being made or that the work is continuing at the pace it needs to, to deliver the ambitions within it that we all want to see achieved. And I'm concerned that one of the things that's slowing progress is the. Reorganisation of Icbs in response to the cutting of their budgets by 50%, and also the health Bill and the abolition of NHS England.
So the people that will be doing the organising and the planning um are organizing and planning something else. Some of them are leaving and we're losing expertise and some of them are being made redundant or leaving before they might get made redundant. And that in itself is causing disruption to the planning of the, of the, of our health services. And I wonder if the minister would be able to comment on that. Lobular health, lobular breast cancer, um as has been said before, has not seen the progress that other forms of breast cancer have in terms of the treatment over recent years.
And there was a moonshot project which was committed to by the previous conservative government of £20 million to look at research to try and really advance that particular form of cancer, which has, um, which needs a bit more attention in the research than it's had of late. And I wonder if the minister is able to tell us whether this government is committed to providing that money for that research. Hospices were mentioned. Hospices provide amazing services for people towards the end of their life. But we've heard in other debates in this chamber, Mr.
Betts, about how they are struggling. And one of the things they're struggling with is the national insurance costs they use. They do have a lot of staff because it's a very person delivered service. And so what that means is all of those members of staff accrue extra costs in terms of national insurance when they're employed by the hospices. And so we have heard of hospices struggling. And I appreciate the government has put a lot of money into hospices, but it's capital money which enables them to, you know, redecorate, build extra bits, provide extra equipment.
But that's that's lovely. But it's not helpful if there aren't the staff there to run the service and to provide the care that the patients so desperately need. And so I wonder what discussions the minister has had about the effects on hospices at the present time from National Insurance, whether she has considered an exemption, what her what her plans are to help support the hospice movement. The other thing I wanted to talk about was a phrase you used earlier on about run out of options.
What happens when you run out of options?Um, now as a doctor, I'm always told you never run out of treatments because palliative treatment is treatment. And even when you run out of treatments, you're still providing a treatment. But what happens when you run out of treatment that's active or likely to be successful in prolonging life or curing disease?And it's important that research is able to continue in. Research is really supported. So I look for the ministers, um, words on what what the government's doing to support research so that new drugs can come online and that the pathway we saw during the pandemic, how quickly the vaccines were brought through the pathway.
But what's gumming it up now?How do we speed it up so that people can get the drugs more quickly?And then what happens in that sort of gray zone between the drugs sort of available?And so going into trial, but it's not quite available yet. And we have the compassionate drugs scheme, and we had an urgent question in the main chamber on this this morning, chair. But the compassionate drug scheme is used where individuals have reached the end of the treatment options available, and they perhaps don't qualify for a trial in pediatrics.
That could be a few days in the age bracket, but they don't qualify for any trials either that are currently available. Perhaps the trials are full. They received a drug in a trial and the trial is finished. But we're still in negotiations about whether that drug is going to be received. What happens is that in some cases, the drug companies will provide those drugs to patients for free. Um, to help them. And unfortunately, towards the end of last year, chair, this government decided to charge VAT on the deemed value of these drugs, which means that they have to pay a charge, sometimes quite a significant charge to give these drugs to patients.
And what we've seen, chair, is that one company, one large pharmaceutical company, has pulled out of the compassionate drug scheme, which means that they're not available for people who need these drugs. This was raised by the honourable the Right Honourable member for Hornchurch and Upminster and the HMRC. Enforcement of this tax has been paused for review, but with the liabilities remaining. And so what's happening is we've got a situation where some drug companies are pulling out, others are considering their position. People with secondary breast cancer and other cancers and serious illnesses cannot wait for the budget.
In the autumn. They need the government to make a decision now to sort this problem out. Now, only last month, the government decided it was going to take VAT off rides at Alton Towers, which is great, but it means if they can do that, they can sort this out as well and they need to get on with it. So I asked the minister to please raise this with her colleagues in the Department of Health, raise this with the colleagues in the Treasury as well, and see what she can do to help people who really have no other option to keep that hope alive with those new and special drugs.
Um, so in summary, chair, the, the cancer plan is ambitious, which is great. It's got some great targets in it, which I hope they achieve, but we do need to see delivery. And I'm looking for the detail from the minister in how this plan will be delivered.
16:14
16:15
16:15
16:15
16:15
Speaker 20
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Speaker 20
Mr. Betts. It is a pleasure to serve under your chairmanship today. I'm very grateful to my honourable friend, the member for Durham and the honourable gentleman. The member for Wokingham, for raising this very important matter today and bringing forward this debate. They both spoke about their own breast cancer journeys very powerfully, and I thank them for sharing their personal experiences with us today. And it's also something that is personal to me in another way, not through having gone through it myself, but having lost my mother in law to breast cancer almost 30 years ago.
Um, it was at the age of just 62. Um, and that was not much older than I am now. Um, and uh, that as you get older, that, that age, 30 years ago seemed a long way off, but now I'm 60 myself. It doesn't seem very old at all. Um, and, uh, it also, uh, is very apparent that my father in law, who's in his 90s, um, is still with us. And it does make you realise how much life this terrible disease robbed her of.
Um, as like my honourable friend, the, the, uh, the member for West Lancashire, um, her secondary breast cancer was diagnosed ten years after her primary um breast cancer. And uh, so that struck me, um, and brought it back to mind, um, that I was also thinking how glad I am and how happy I am that the treatment now is so much better than it was 30 years ago. Um, and that my hon. Friend is very much still alive and well and kicking and in great voice, as we all heard today.
But it was losing my mother in law at such a young age. And what spurred me on as a new MP in 2005 to join the all party group for breast cancer. And I went on to be an officer and then chair for a number of years. Um, and now I'm in government. I do feel an immense responsibility resting on my shoulders because I want to do the right thing, not just in memory of my mother in law, but for all of the honourable members who have spoken today and shared their stories and those of their constituents and campaigners and all those I have met since I was first elected to this place.
And this has been a very moving and informative debate with so many excellent speeches from honourable members. But I want to particularly commend my predecessor as Public Health and Prevention Minister. My hon. Friend the member for West Lancashire for her fantastic work on the National Cancer Plan, which was all the better for being led by someone not just with lived experience, but actually living in the middle of her cancer treatment at the same time. How she was able to do that, um, with the workload that I am well aware of that is huge.
In this brief, I have to say, on top of her treatment, whilst at the same time driving progress, not just on the National Cancer plan, but on the ten year health plan, on the HIV action plan, on the men's health plan, and is just testament to how focused, tough and frankly brilliant she is and following in her footsteps. Mr. Betts is a challenge. I am not afraid to admit, and I am thrilled that she is with us today, and we were all able to witness firsthand her brilliance, um, in her speech today.
So it I want to come to the substance of the issue that all honourable members have raised. And I will say at the start, if there is anything I don't get to, if I run out of time or I've missed, I will. And my officials will commit to write to honourable members. So don't think that I'll just ignore what you've said, but it it will be responded to in due course. But I want to start with data. So the more data we collect, the more we can empower patients to make informed choices about their care.
But it's not just about giving patients a clearer picture. Important though, that is, the government made data one of the five big bets of our ten year health plan. I think that's the right phraseology terminology, because the NHS is a data superpower. Just as coal was the fuel of the first industrial revolution, data will power the life sciences revolution, and we can use those data sets to help scientists make further breakthroughs in cancer research. And better data is also important for researchers to understand the number of cohorts they have to work with.
It is important for NHS commissioners who will have a clearer idea of patient demand. You simply can't improve something that you can't measure. And in the words of Jo Taylor, the late founder of Met Up UK, we only count when we're dead and that's just unacceptable. And so as part of Jo's legacy, we now have a specific commitment in our national cancer plan to begin collecting data for recurrent cancers, starting with metastatic breast cancer. I also want to pay tribute once again to my honourable friend, the member for West Lancashire, for personally making sure that that commitment was there.
Now I've picked up her baton. As I said, I am determined to make sure we can make good on that promise. The National Disease Registration Service, or NDI, is work. With NHS trusts to improve their reporting of non primary cancer cancers in the cancer Outcomes and Services dataset, and I can update the House today that since the publication of the National Cancer Plan, the NDI have made the collection and reporting of secondary breast cancer a key priority. They are coordinating with all partners, charities, teams of experts and trusts to properly collect data on secondary breast cancers at the source so they are helping trusts to improve the way they collect data for things like disease progression, recurrence and metastatic spread.
And in the meantime, they are teaming up with researchers at the University of Oxford to develop a new algorithm. And this infers the numbers of metastatic disease by combining multiple routine datasets. So in plain English, what it means is this trusts routinely report all sorts of data to NHS England imaging, chemo, radiotherapy and all of this data comes into the NHS from different places across the country. And then it can be linked together to give us a good idea on numbers until we can get an even clearer picture through trust reporting.
So, Mr. Betts, we are already off to a good start because data was already starting to improve under this government, even before the National Cancer Plan was published, and consecutive audits of metastatic breast cancer by the National Cancer Audit Collaborating Centre, or Natcan. They cover a greater number of people living with metastatic breast cancer, and this data coverage of metastatic breast cancer is already improving, and the DRS will also be publishing a baseline assessment of incidence and prevalence and the total number of people living with metastatic breast cancer by the end of this year.
And this will be the best assessment we have ever had. Mr. Betts, cancer patients deserve to have the finest minds in the country. Harnessing that data to make a difference, and that is why we are also setting up a new health data research service. Also, by the end of this year, it will provide a secure single access point for researchers, including data relevant to cancer diagnosis, care and outcomes. So what this what that means is wherever they live in our country, whether in Washington, Wokingham or Durham, scientists will be sitting on a treasure trove of data for their research.
Our Life Sciences sector plan commits us to working with industry to accelerate growth in spending on innovative medicines. And just last year, a cutting edge oral targeted cancer therapy that helps to slow or stop cell growth was approved for treating advanced breast cancer on the NHS in England. Now, if I can turn to some specific points that members raised, the honourable member for Horsham and the Honourable member for North East Fife, um spoke about lobular breast cancer and the Lobular Moonshot project, and I want to assure my honourable.
The honourable members that government funders are committed to continuing to work with researchers to support the development of fundable research proposals to help drive a stronger understanding of the biology behind lobular breast cancer, as well as develop effective treatments. And in April, Lord Vallance and myself, alongside NIH and MRC representatives, we met with the Lobular moonshot project and it was a very interesting meeting. I have to say, in Lord Vallance will also be hosting a scientific round table, um, on lobular Breast Cancer organised for this month.
And that was one of the commitments we made, um, at that meeting. And my honourable friend, the member for West Lancashire on the Cancer Clinical Trials Accelerator, I can assure my hon.
Um, it was at the age of just 62. Um, and that was not much older than I am now. Um, and uh, that as you get older, that, that age, 30 years ago seemed a long way off, but now I'm 60 myself. It doesn't seem very old at all. Um, and, uh, it also, uh, is very apparent that my father in law, who's in his 90s, um, is still with us. And it does make you realise how much life this terrible disease robbed her of.
Um, as like my honourable friend, the, the, uh, the member for West Lancashire, um, her secondary breast cancer was diagnosed ten years after her primary um breast cancer. And uh, so that struck me, um, and brought it back to mind, um, that I was also thinking how glad I am and how happy I am that the treatment now is so much better than it was 30 years ago. Um, and that my hon. Friend is very much still alive and well and kicking and in great voice, as we all heard today.
But it was losing my mother in law at such a young age. And what spurred me on as a new MP in 2005 to join the all party group for breast cancer. And I went on to be an officer and then chair for a number of years. Um, and now I'm in government. I do feel an immense responsibility resting on my shoulders because I want to do the right thing, not just in memory of my mother in law, but for all of the honourable members who have spoken today and shared their stories and those of their constituents and campaigners and all those I have met since I was first elected to this place.
And this has been a very moving and informative debate with so many excellent speeches from honourable members. But I want to particularly commend my predecessor as Public Health and Prevention Minister. My hon. Friend the member for West Lancashire for her fantastic work on the National Cancer Plan, which was all the better for being led by someone not just with lived experience, but actually living in the middle of her cancer treatment at the same time. How she was able to do that, um, with the workload that I am well aware of that is huge.
In this brief, I have to say, on top of her treatment, whilst at the same time driving progress, not just on the National Cancer plan, but on the ten year health plan, on the HIV action plan, on the men's health plan, and is just testament to how focused, tough and frankly brilliant she is and following in her footsteps. Mr. Betts is a challenge. I am not afraid to admit, and I am thrilled that she is with us today, and we were all able to witness firsthand her brilliance, um, in her speech today.
So it I want to come to the substance of the issue that all honourable members have raised. And I will say at the start, if there is anything I don't get to, if I run out of time or I've missed, I will. And my officials will commit to write to honourable members. So don't think that I'll just ignore what you've said, but it it will be responded to in due course. But I want to start with data. So the more data we collect, the more we can empower patients to make informed choices about their care.
But it's not just about giving patients a clearer picture. Important though, that is, the government made data one of the five big bets of our ten year health plan. I think that's the right phraseology terminology, because the NHS is a data superpower. Just as coal was the fuel of the first industrial revolution, data will power the life sciences revolution, and we can use those data sets to help scientists make further breakthroughs in cancer research. And better data is also important for researchers to understand the number of cohorts they have to work with.
It is important for NHS commissioners who will have a clearer idea of patient demand. You simply can't improve something that you can't measure. And in the words of Jo Taylor, the late founder of Met Up UK, we only count when we're dead and that's just unacceptable. And so as part of Jo's legacy, we now have a specific commitment in our national cancer plan to begin collecting data for recurrent cancers, starting with metastatic breast cancer. I also want to pay tribute once again to my honourable friend, the member for West Lancashire, for personally making sure that that commitment was there.
Now I've picked up her baton. As I said, I am determined to make sure we can make good on that promise. The National Disease Registration Service, or NDI, is work. With NHS trusts to improve their reporting of non primary cancer cancers in the cancer Outcomes and Services dataset, and I can update the House today that since the publication of the National Cancer Plan, the NDI have made the collection and reporting of secondary breast cancer a key priority. They are coordinating with all partners, charities, teams of experts and trusts to properly collect data on secondary breast cancers at the source so they are helping trusts to improve the way they collect data for things like disease progression, recurrence and metastatic spread.
And in the meantime, they are teaming up with researchers at the University of Oxford to develop a new algorithm. And this infers the numbers of metastatic disease by combining multiple routine datasets. So in plain English, what it means is this trusts routinely report all sorts of data to NHS England imaging, chemo, radiotherapy and all of this data comes into the NHS from different places across the country. And then it can be linked together to give us a good idea on numbers until we can get an even clearer picture through trust reporting.
So, Mr. Betts, we are already off to a good start because data was already starting to improve under this government, even before the National Cancer Plan was published, and consecutive audits of metastatic breast cancer by the National Cancer Audit Collaborating Centre, or Natcan. They cover a greater number of people living with metastatic breast cancer, and this data coverage of metastatic breast cancer is already improving, and the DRS will also be publishing a baseline assessment of incidence and prevalence and the total number of people living with metastatic breast cancer by the end of this year.
And this will be the best assessment we have ever had. Mr. Betts, cancer patients deserve to have the finest minds in the country. Harnessing that data to make a difference, and that is why we are also setting up a new health data research service. Also, by the end of this year, it will provide a secure single access point for researchers, including data relevant to cancer diagnosis, care and outcomes. So what this what that means is wherever they live in our country, whether in Washington, Wokingham or Durham, scientists will be sitting on a treasure trove of data for their research.
Our Life Sciences sector plan commits us to working with industry to accelerate growth in spending on innovative medicines. And just last year, a cutting edge oral targeted cancer therapy that helps to slow or stop cell growth was approved for treating advanced breast cancer on the NHS in England. Now, if I can turn to some specific points that members raised, the honourable member for Horsham and the Honourable member for North East Fife, um spoke about lobular breast cancer and the Lobular Moonshot project, and I want to assure my honourable.
The honourable members that government funders are committed to continuing to work with researchers to support the development of fundable research proposals to help drive a stronger understanding of the biology behind lobular breast cancer, as well as develop effective treatments. And in April, Lord Vallance and myself, alongside NIH and MRC representatives, we met with the Lobular moonshot project and it was a very interesting meeting. I have to say, in Lord Vallance will also be hosting a scientific round table, um, on lobular Breast Cancer organised for this month.
And that was one of the commitments we made, um, at that meeting. And my honourable friend, the member for West Lancashire on the Cancer Clinical Trials Accelerator, I can assure my hon.
16:25
Speaker 13
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Speaker 13
HR are working hard to develop and set up the Cancer Clinical Trials Accelerator to the timeline set out in the National Cancer Plan. And the honourable member for. Also, um, uh, asked me once again about, uh, clinical trials at Queen's University Belfast and, um, what discussions that ministers had had with um Northern Ireland ministers. And I commit to write to my honourable friend with further information on that matter. And his plea at the end for more screening, more funding and more saving of lives did not fall on deaf ears by anyone in this chamber, I am sure.
So, Mr. Betts, it has been a privilege to respond on behalf of the government today, and I have spent the best part of 20 to 30 years, 21 years in this place, fighting alongside campaigners on this issue. Um, with many others. And now I am in government. They are all at the forefront of my mind. And when it comes to cancer, colleagues are pushing at an open door with me and I will never forget my roots as chair of the all party group and a daughter in law, of losing someone to to secondary breast cancer.
It far, far too young in age. And I know the honourable member for Wokingham with his very personal connection to this campaign that the all party group could not be in better hands with him as its chair. So, um, as I said, let me end by thanking all honourable members for keeping me on my toes. If there are any points that I have not responded to from my the honourable lady who speaks for the opposition, I will commit, as I said, to respond to all of those in writing and any other honourable members also, and I do look forward to working with you all in the months and years ahead as we take forward this very important work.
So, Mr. Betts, it has been a privilege to respond on behalf of the government today, and I have spent the best part of 20 to 30 years, 21 years in this place, fighting alongside campaigners on this issue. Um, with many others. And now I am in government. They are all at the forefront of my mind. And when it comes to cancer, colleagues are pushing at an open door with me and I will never forget my roots as chair of the all party group and a daughter in law, of losing someone to to secondary breast cancer.
It far, far too young in age. And I know the honourable member for Wokingham with his very personal connection to this campaign that the all party group could not be in better hands with him as its chair. So, um, as I said, let me end by thanking all honourable members for keeping me on my toes. If there are any points that I have not responded to from my the honourable lady who speaks for the opposition, I will commit, as I said, to respond to all of those in writing and any other honourable members also, and I do look forward to working with you all in the months and years ahead as we take forward this very important work.
16:27
16:27
Speaker 16
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Speaker 16
You very much, Mr. Betts, and I'd like to thank all of the members who have contributed to this debate. Many have shared their own personal experiences and experiences of their constituents, and I know that this can be very difficult and a hard thing to share. So I commend everyone for their participation in this debate. From this debate, it really is clear. That there is a real need for urgent action, and I hope the minister has taken note of the issues that have been shared in the debate.
The member for Durham talked about. The need to improve data, as several of us did, because we can't support people properly without data. And I think from the minister's response, I think she probably gets that. So that's that's really good. The members for Horsham and North East Fife talked about highlighting issues around lobular cancer and the need for specific pathways to treatment. They also. With the. With the member for North East. Fife.
I think I've said that twice now mentioned the effect of cancer on families, and I must. Say still today, 18 years after I had to do it. The hardest conversation I've ever had was a conversation with my 13 year old and 14 year old daughter telling them that I had breast cancer and the effect that breast cancer has on families is just immense. I think we've just seen this afternoon, one of the most passionate speeches in this House on breast cancer from the member for West Lancs, and she has been a really, really good.
The member for Durham talked about. The need to improve data, as several of us did, because we can't support people properly without data. And I think from the minister's response, I think she probably gets that. So that's that's really good. The members for Horsham and North East Fife talked about highlighting issues around lobular cancer and the need for specific pathways to treatment. They also. With the. With the member for North East. Fife.
I think I've said that twice now mentioned the effect of cancer on families, and I must. Say still today, 18 years after I had to do it. The hardest conversation I've ever had was a conversation with my 13 year old and 14 year old daughter telling them that I had breast cancer and the effect that breast cancer has on families is just immense. I think we've just seen this afternoon, one of the most passionate speeches in this House on breast cancer from the member for West Lancs, and she has been a really, really good.
16:29
16:30