Commons Chamber
Friday 14th March 2025
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09:35
None
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**** Possible New Speaker ****
Order, Order, order.
**** Possible New Speaker ****
I beg to move that this house sits in private.
**** Possible New Speaker ****
sits in private. The question is that this house sits in private. I think the no sits in private. I think the no hazard. The clerk will now proceed
**** Possible New Speaker ****
hazard. The clerk will now proceed to read the orders of the day. Rare cancers Bill, second
None
**** Possible New Speaker ****
Order, Order, order.
**** Possible New Speaker ****
I beg to move that this house sits in private.
**** Possible New Speaker ****
sits in private. The question is that this house sits in private. I think the no sits in private. I think the no hazard. The clerk will now proceed
**** Possible New Speaker ****
hazard. The clerk will now proceed to read the orders of the day. Rare cancers Bill, second
09:35
Private Members' Bills: Rare Cancers Bill: Second Reading
-
**** Possible New Speaker ****
reading. Thank you. I beg to move that the bill now be ready second time. We all know someone who has suffered
Private Members' Bills: Rare Cancers Bill: Second Reading
**** Possible New Speaker ****
reading. Thank you. I beg to move that the bill now be ready second time. We all know someone who has suffered
09:36
Private Members' Bills: Rare Cancers Bill: Second Reading
Dr Scott Arthur MP (Edinburgh South West, Labour)
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Private Members' Bills: Rare Cancers Bill: Second Reading
Dr Scott Arthur MP (Edinburgh South West, Labour)
from a rare cancer, brain tumour, childhood cancers, pancreatic childhood cancers, pancreatic cancer, liver cancer and many more. There is a long list of cancers which are all-too-familiar. While each of these may be considered statistic, they are anything but. Cancers states that less common cancers account for 47% of all UK cancer diagnoses, a staggering 180,000 people per year. The irony of the title of this bill is that the so-called rare cancers are not rare. Common cancers deserve rare.
Common cancers deserve attention but so do rare cancers. I want to share an example of a family in my Edinburgh South West constituency who were confronted with a rare cancer. The symptoms first began with loss of appetite and leg pains. This was September 2021. A time when face-to-face GP consultations were not possible. She was given IB proofing. It was thought she may have a virus. Six weeks later, she returned and was transferred to the cancer ward where she was diagnosed with stage IV neuroblastoma.
She was given a 50% chance of survival on diagnosis. She underwent rounds of chemotherapy and an operation. Despite this, she sadly passed away about a year over her symptoms appeared. Tilly was just four years old. Her father is in the gallery today, Head Teacher in my constituency. He reached out to me after reading this Bill. He said that the development of new treatments like so many other rare cancers has been moving at a glacial pace for too long.
This pace of change is not respected by other cancers, and it meant that Tilly missed her seventh birthday yesterday. I want to thank Jonathan for sharing the story. I wish him all the best as he starts a new job. I also want to thank the team for their ongoing support to the family and many others. Jonathan and I do not want to suggest this bill could have saved Tilly. We hope it would improve survival rates for others. Beyond the 50%.
This is why he is here today and this is why I am here today. Nobody told me that the most amazing thing about being an MP is the people we meet daily. People who want to make their community, our country, or even the world a better place. This is particularly true of people I have been humbled to meet on my journey presenting this bill, the bereaved, survivors and campaigners. They all want one thing, justice. Although healthcare in the UK is based on the notion of equality, fairness and justice, they believe that cancer patients are being overlooked.
Their demand for justice covers three points. First, rare cancers should not mean beating it. I spoke earlier about 47% of all UK cancer diagnoses each year can be attributed to rare and less common types. These patients already have the cards stacked against them as they are 17% less likely to survive. This is an injustice. Caused by the relative lack of research over many years. Having a rare cancer should not mean you are less likely to benefit from a medical breakthrough.
In 2024, an astonishing 82% of common cancer patients were not offered a clinical trial. Denying them access to treatments. This is because these trials didn't exist to start with because of process, and they are not always easy for patients to access. There is a remarkable young woman in my constituency. She has been living with hereupon stoma since she was 10. She has been through it all, a prognosis of ability, 26 rounds of chemotherapy and eight relapses.
Her and her mum are fundraising legends locally. I do not know a school or working place in Edinburgh that did not help raise £500,000 for life- saving specialist treatment. Now 21, she is an example to us all. She owes her life to a cancer drug to treat neuroblastoma and not generally available in the UK for that purpose. Though solving kids cancer is working on that, I understand. She appears in my social media so much and she is really well-known because of that fantastic campaign that her and her mum ran.
She is a bit of a celebrity and she came into my office recently to talk about the bill and it was really humbling to meet her. I was also quite starstruck and I told her it was like Taylor Swift was entering my office. And I did have to resist the time to show to exchange friendship bracelets with her, but she did give me this badge which I she did give me this badge which I am proud to wear today.
Curious story is important because it reminds us that the re-purpose in existing drugs can unlock great benefits, but these benefits can only be delivered to medical research and through clinical trial. Unfortunately, at best.
**** Possible New Speaker ****
The NHS has a drug-free purpose in office, and to date, they have repurposed one drug and that was for repurposed one drug and that was for breast cancer. Does my honourable friends think that that is good enough?
**** Possible New Speaker ****
enough? Thank you. I welcome that intervention. I think it is a intervention. I think it is a leading question. I don't think anybody here think that is good anybody here think that is good enough, and I'm sure ministers here today agree with that absolutely. today agree with that absolutely. Unfortunately, at present, there are very few clinical trials in this country for cancer treatments, and families should not need to crowdfunding for treatment overseas. We should be building capacity here in the UK.
Thirdly, having read cancer should not mean your diagnosis is delayed when compared to other cancers. Read cancer sufferers, their symptoms are often less likely to recognise as doctors are less familiar with them.
**** Possible New Speaker ****
I thank my friend for giving way and for the powerful way he is and for the powerful way he is introducing this bill this morning. My constituent is just 29 years old and has amounted to little girls. She was diagnosed with grade 4 Geo blah stoma on her birthday last blah stoma on her birthday last year. Four months prior to her diagnosis, she was treated for diagnosis, she was treated for migraines by her GP. She knew she wasn't suffering from migraines yet wasn't suffering from migraines yet stuff was really dismissed by an A&E doctor and felt nobody was listening to her.
Steph has since had brain surgery, radiotherapy, and chemotherapy. My honourable friends knows that early diagnosis and treatment is absolutely vital. Can he assure Steph and her family today that this bill will also help raise awareness across the medical
**** Possible New Speaker ****
profession of rare brain cancers? Absolutely. Last week, I attended
**** Possible New Speaker ****
Absolutely. Last week, I attended a reception for an appeal, and I was a reception for an appeal, and I was really struck by the fact that the early diagnosis, I will command that early diagnosis, I will command that in a second. Consequently, there are too many people diagnosed too late. too many people diagnosed too late. Last week, at an event, I met Gabrielle, her wife and children. Gabrielle, her wife and children. Gabrielle told me she was referred to a neurologist who didn't recognise range of her symptoms and told her to go home, breathe into a paperback and get some paracetamol.
If only curing brain tumours were so easy. And there was a comment made by my honourable friend, an observation made on this journey is that so many people have been talking about late diagnoses and so many of those people are women. And it is purely anecdotal but it does seem to be the case that when I was at the Eve appeal reception, the point was made there that so many women are turned away and the GP tells them you are hormonal, you are
**** Possible New Speaker ****
He is making an incredibly
**** Possible New Speaker ****
He is making an incredibly important point, one that many in the chamber will agree with. It's a the chamber will agree with. It's a stark warning from a background they are more likely to be dismissed even
**** Possible New Speaker ****
more so. I thank my honourable friend for
**** Possible New Speaker ****
I thank my honourable friend for that point. The point was made by that point. The point was made by the Eve appeal. When I met with the Minister yesterday, I did talk about this issue with her. She very gently pointed out to me that it is not just in healthcare that women are resist as hormonal and menstrual. I thank for that, in the gentlest possible way. The cruel irony is Rare Cancers typically are less survivable making an early diagnosis more important.
I have spoken about pure outcomes, lack of progress and developing treatments, and late diagnosis. My focus is on these points. But because of reflections that have been made, I'm sure it will feature as a plan as it goes forward. I would be the first to admit that when I was successful in the ballot for the private members bill I found it daunting as a new MP. I thought I would submit good MP. I thought I would submit good ideas but I was soon inundated with calls from constituents telling me that their cause was better than any other.
I considered many worthwhile causes, but whilst having a coffee in Tesco's, I received emails from members of the public supporting a members of the public supporting a campaign by my honourable friend. I met one of the people who emailed me last week, and it was incredibly moving to meet her actually because it took me right back to the start of this journey. And I posted about meeting her, and straight away somebody knew her and said she had helped them as well.
It is a reminder that so many people are affected by these conditions, and the importance of doing something positive to help other people. The member for Mitcham and Morden's campaign related to this type of tumour that took my father-in-law. At that moment it felt the stars had aligned. And I want to pay tribute to the member for Mitcham and Morden. I know her to be a formidable woman who in this context is driven by the tumour that took her sister, Margaret.
I did not know her sister at all, but I do know that she shapes my party, she helped change our country for the better. And I know above all else she was loved by her sister. It is typical of so many rare cancers. My father- in-law was a dignified man but that is something this tumour did not respect. He was a teacher in five. He was married to Silvia and had four daughters, Denise, Iona, my wife Audrey, in time they had grandchildren, Andrew, Ruth, Hannah, Ben, Rory, and Sophie.
Ivor was not a passive grandfather, he worked hard to ensure his grandchildren flourished. In September 2017 he began having problems with his speech. An NHS nurse was concerned it might be a sign of dementia. We all hope that was not the case. Following an MRI scan in November we received the devastating news that he had plus Toma. He never had a pound of fat on him but when it came to Christmas time he did to hoover up the food and he enjoyed a Christmas meal.
So it was great to see at Christmas. But we did have a feeling it would be his last. Once we entered the new year he began to lose his mobility and eventually he was admitted to hospital. In 2018 surrounded by his wife and surrounded by his wife and daughters, he died. He had a good life and many people he taught at school. As a physically fit man, he should have lived longer. He should have celebrated his birthday last week.
I assumed that he had been unlucky with Glioblastoma. But it was not until I met the member for Mitcham and more than that I learned that only 25% of patients with this condition live longer than one year. And only one in 20 survive beyond five years. Despite this awful prognosis, like other rare cancers, the drugs to treat it have not changed in decades. That is why I knew I needed to introduce a bill that would help those fighting against Glioblastoma an other Rare Cancers Bill the tools they need to increase their efforts.
Over the increase their efforts. Over the last 15 years, thanks to the dedicated work of the survivors, we have seen a 10% rise in survival rates for those diagnosed with cancer. Globally new treatments are being rolled out, improving treatments and saving lives. This is not due to a lack of effort by charities or those affected by diseases. In the gallery today are members of charities fighting members of charities fighting against rare cancers and their uphill battle.
I want to thank them for their hard work in helping me to develop this bill in helping me. It aims to address the injustices faced by Glioblastoma patients and their families. What I would say, this is about making a difference to people's lives. It is about supporting families. The reason for this uphill battle is research into rare cancers is much less appealing to pharmaceutical companies when compared to more common conditions. The smaller patient populations, there is an increased logistical challenge in bringing patients together.
We are lacking a development strategy and there is no single source. Companies must undertake the costly endeavour of finding patients and verifying eligibility. Even if they succeed and the drug proves to be an effective treatment, companies face the challenge of selling the drug developed at great expense, to a small market. Ultimately these companies exist to return a profit for their shareholders. When given a choice between investing in potential treatment for rare cancer or a more common one, often rare cancer patients lose out.
Having accepted the challenges faced, let me know address what this bill aims to accomplish. I wish to raise four key measures. I will list them and describe them. Firstly, appoint a name to responsible lead for delivery of rare cancer research. Create a single registry of rare cancer trials. Create a registry of rare cancer patients. Build the evidence-based of those receiving these treatments. Let me explain why these are important. The bill will place a duty on the Secretary of State to facilitate more research related to rare cancer patients.
The appointment of a national specialty in the National Institute for Health and Care Research would provide the Secretary of State with advice on the design and planning of research to facilitate collaborations between relevant parties. This will ensure coordination and accountability for the delivery of new cancer research in the UK. Second, to increase access to clinical trials, through the Secretary of State's new duties this will be accomplished as part of the existing research, ensuring all trials are registered in a single place.
Thirdly, charities and clinicians Tommy more trials would be attracted to the UK if they had easy access. Establishing a single database of willing patients would remove a significant burden on researchers, in finding and verifying eligible people.
**** Possible New Speaker ****
I'm grateful and I grasped him on bringing forward this bill on this important subject. He is talking important subject. He is talking about research. This bill encloses two and three limit the application of his will to England and Wales. of his will to England and Wales. Can he explain why that is and what is happening in relation to these
**** Possible New Speaker ****
research issues in Scotland? I thank the honourable gentleman
**** Possible New Speaker ****
I thank the honourable gentleman four his question. The challenge is devolution. I am a huge fan of devolution but I do think often the UK is at its best when it works together. I do hope that in time we will see progress and we will work together on issues. There has been discussions across the UK about how we work together on this. So watch this space as part of the answer. Fourthly, have a government review examining how they can better incentivise pharmaceutical companies to invest in clinical trials.
This will consider how incentives could be provided for companies to trial the repurposed thing of new cancer treatments. We often hear about drug development for one cancer being used to defeat another. My bill aims to build the foundation to industrialise this approach with incentives. The EU has a similar system for incentivising testing of drugs. Those which have already been produced for adults. So this approach has been tried and tested. Together these measures will ensure we have the leadership and will remove barriers faced by researchers and pharmaceutical companies to run
**** Possible New Speaker ****
new trials in the UK. I thank the member for the powerful way he is introducing this powerful way he is introducing this bill. He recognised some of those pioneering teams like the one in Charing Cross Hospital under my Imperial College trust where a professor is leading the way in groundbreaking treatment research groundbreaking treatment research for gestation all disease and germ cell tumours? Does he agree that cell tumours? Does he agree that those centres need support to expand and share the research findings that and share the research findings that they are bringing to the rest of the NHS?
**** Possible New Speaker ****
Absolutely. I think there is fantastic expertise at the universities right across the UK. universities right across the UK. And I refer members to my Register of Interests in the university of Interests in the university sector. There is much more we can do to attract the best researchers in to attract the best researchers in the UK and build massively within UK universities. These measures will provide greater accountability for the delivery of new research. Please the delivery of new research.
Please don't just take my word for it. The bill was described as essential for cancer cures. The cancer task force said the bill could be truly transformative in the UK approach to research for rare and less common cancers. My friend at the Brain tumours charity said the Rare Cancers Bill is a framework for tangible and impactful change. I have to mention my daughter's connection with a charity. She is running a marathon in May and I wish running a marathon in May and I wish her well for that.
The bill is also supported by the following. I will list some of the groups that are supporting the bill today. Pancreatic cancer UK have been fantastic in their support for what we do. Cancer 52, an organisation. we do. Cancer 52, an organisation. The Angel Mums, this cancer trust. Inflammatory cancer accounts for 2% of breast cancer diagnosis in the UK G about 10% of deaths. Targeting ovarian cancer, the brain trust. The neurology foundation, the Tessa Jowell cancer mission, sarcoma UK, I met them this week.
A friend worked with them. Maggie's, Solving Cancer, the British trust, blood cancer UK, CC LG, the children's Cancer group. CTL support, neuroendocrine cancer UK. Melanoma focus. My lower UK. Hopeful Tomorrow. Yorkshire Cancer Research. The Tessa Jowell foundation. The UK support group. Blood Cancer research trust. Neurosciences foundation and aid appeal. They had a fantastic reception last week. I went along to that and having their support it felt like a key point in the progress we were making.
Building support for this bill. Great to see the Minister there as well. And I also have to say the cake there was More organisations have been getting in touch to say they want support, so I know many members in the chamber will have deeply personal stories to tell on behalf of constituents. We look forward to hearing those because it is so important to give people points. I will continue this by saying that the bill we are debating today has a real chance of making a difference, for too long cancer patients have been left on the sidelines, and this cannot go on.
We have a chance for the signal, and those diagnoses need to better chance of a full life. Let me pass this bill today to take the fight to the cancers and save lives. I commend this bill to the house.
**** Possible New Speaker ****
The question is that the bill now be read a second time, and before I call first speaker, I am aware that call first speaker, I am aware that this is a very personal debate. Members, so please feel free to
Common cancers deserve attention but so do rare cancers. I want to share an example of a family in my Edinburgh South West constituency who were confronted with a rare cancer. The symptoms first began with loss of appetite and leg pains. This was September 2021. A time when face-to-face GP consultations were not possible. She was given IB proofing. It was thought she may have a virus. Six weeks later, she returned and was transferred to the cancer ward where she was diagnosed with stage IV neuroblastoma.
She was given a 50% chance of survival on diagnosis. She underwent rounds of chemotherapy and an operation. Despite this, she sadly passed away about a year over her symptoms appeared. Tilly was just four years old. Her father is in the gallery today, Head Teacher in my constituency. He reached out to me after reading this Bill. He said that the development of new treatments like so many other rare cancers has been moving at a glacial pace for too long.
This pace of change is not respected by other cancers, and it meant that Tilly missed her seventh birthday yesterday. I want to thank Jonathan for sharing the story. I wish him all the best as he starts a new job. I also want to thank the team for their ongoing support to the family and many others. Jonathan and I do not want to suggest this bill could have saved Tilly. We hope it would improve survival rates for others. Beyond the 50%.
This is why he is here today and this is why I am here today. Nobody told me that the most amazing thing about being an MP is the people we meet daily. People who want to make their community, our country, or even the world a better place. This is particularly true of people I have been humbled to meet on my journey presenting this bill, the bereaved, survivors and campaigners. They all want one thing, justice. Although healthcare in the UK is based on the notion of equality, fairness and justice, they believe that cancer patients are being overlooked.
Their demand for justice covers three points. First, rare cancers should not mean beating it. I spoke earlier about 47% of all UK cancer diagnoses each year can be attributed to rare and less common types. These patients already have the cards stacked against them as they are 17% less likely to survive. This is an injustice. Caused by the relative lack of research over many years. Having a rare cancer should not mean you are less likely to benefit from a medical breakthrough.
In 2024, an astonishing 82% of common cancer patients were not offered a clinical trial. Denying them access to treatments. This is because these trials didn't exist to start with because of process, and they are not always easy for patients to access. There is a remarkable young woman in my constituency. She has been living with hereupon stoma since she was 10. She has been through it all, a prognosis of ability, 26 rounds of chemotherapy and eight relapses.
Her and her mum are fundraising legends locally. I do not know a school or working place in Edinburgh that did not help raise £500,000 for life- saving specialist treatment. Now 21, she is an example to us all. She owes her life to a cancer drug to treat neuroblastoma and not generally available in the UK for that purpose. Though solving kids cancer is working on that, I understand. She appears in my social media so much and she is really well-known because of that fantastic campaign that her and her mum ran.
She is a bit of a celebrity and she came into my office recently to talk about the bill and it was really humbling to meet her. I was also quite starstruck and I told her it was like Taylor Swift was entering my office. And I did have to resist the time to show to exchange friendship bracelets with her, but she did give me this badge which I she did give me this badge which I am proud to wear today.
Curious story is important because it reminds us that the re-purpose in existing drugs can unlock great benefits, but these benefits can only be delivered to medical research and through clinical trial. Unfortunately, at best.
**** Possible New Speaker ****
The NHS has a drug-free purpose in office, and to date, they have repurposed one drug and that was for repurposed one drug and that was for breast cancer. Does my honourable friends think that that is good enough?
**** Possible New Speaker ****
enough? Thank you. I welcome that intervention. I think it is a intervention. I think it is a leading question. I don't think anybody here think that is good anybody here think that is good enough, and I'm sure ministers here today agree with that absolutely. today agree with that absolutely. Unfortunately, at present, there are very few clinical trials in this country for cancer treatments, and families should not need to crowdfunding for treatment overseas. We should be building capacity here in the UK.
Thirdly, having read cancer should not mean your diagnosis is delayed when compared to other cancers. Read cancer sufferers, their symptoms are often less likely to recognise as doctors are less familiar with them.
**** Possible New Speaker ****
I thank my friend for giving way and for the powerful way he is and for the powerful way he is introducing this bill this morning. My constituent is just 29 years old and has amounted to little girls. She was diagnosed with grade 4 Geo blah stoma on her birthday last blah stoma on her birthday last year. Four months prior to her diagnosis, she was treated for diagnosis, she was treated for migraines by her GP. She knew she wasn't suffering from migraines yet wasn't suffering from migraines yet stuff was really dismissed by an A&E doctor and felt nobody was listening to her.
Steph has since had brain surgery, radiotherapy, and chemotherapy. My honourable friends knows that early diagnosis and treatment is absolutely vital. Can he assure Steph and her family today that this bill will also help raise awareness across the medical
**** Possible New Speaker ****
profession of rare brain cancers? Absolutely. Last week, I attended
**** Possible New Speaker ****
Absolutely. Last week, I attended a reception for an appeal, and I was a reception for an appeal, and I was really struck by the fact that the early diagnosis, I will command that early diagnosis, I will command that in a second. Consequently, there are too many people diagnosed too late. too many people diagnosed too late. Last week, at an event, I met Gabrielle, her wife and children. Gabrielle, her wife and children. Gabrielle told me she was referred to a neurologist who didn't recognise range of her symptoms and told her to go home, breathe into a paperback and get some paracetamol.
If only curing brain tumours were so easy. And there was a comment made by my honourable friend, an observation made on this journey is that so many people have been talking about late diagnoses and so many of those people are women. And it is purely anecdotal but it does seem to be the case that when I was at the Eve appeal reception, the point was made there that so many women are turned away and the GP tells them you are hormonal, you are
**** Possible New Speaker ****
He is making an incredibly
**** Possible New Speaker ****
He is making an incredibly important point, one that many in the chamber will agree with. It's a the chamber will agree with. It's a stark warning from a background they are more likely to be dismissed even
**** Possible New Speaker ****
more so. I thank my honourable friend for
**** Possible New Speaker ****
I thank my honourable friend for that point. The point was made by that point. The point was made by the Eve appeal. When I met with the Minister yesterday, I did talk about this issue with her. She very gently pointed out to me that it is not just in healthcare that women are resist as hormonal and menstrual. I thank for that, in the gentlest possible way. The cruel irony is Rare Cancers typically are less survivable making an early diagnosis more important.
I have spoken about pure outcomes, lack of progress and developing treatments, and late diagnosis. My focus is on these points. But because of reflections that have been made, I'm sure it will feature as a plan as it goes forward. I would be the first to admit that when I was successful in the ballot for the private members bill I found it daunting as a new MP. I thought I would submit good MP. I thought I would submit good ideas but I was soon inundated with calls from constituents telling me that their cause was better than any other.
I considered many worthwhile causes, but whilst having a coffee in Tesco's, I received emails from members of the public supporting a members of the public supporting a campaign by my honourable friend. I met one of the people who emailed me last week, and it was incredibly moving to meet her actually because it took me right back to the start of this journey. And I posted about meeting her, and straight away somebody knew her and said she had helped them as well.
It is a reminder that so many people are affected by these conditions, and the importance of doing something positive to help other people. The member for Mitcham and Morden's campaign related to this type of tumour that took my father-in-law. At that moment it felt the stars had aligned. And I want to pay tribute to the member for Mitcham and Morden. I know her to be a formidable woman who in this context is driven by the tumour that took her sister, Margaret.
I did not know her sister at all, but I do know that she shapes my party, she helped change our country for the better. And I know above all else she was loved by her sister. It is typical of so many rare cancers. My father- in-law was a dignified man but that is something this tumour did not respect. He was a teacher in five. He was married to Silvia and had four daughters, Denise, Iona, my wife Audrey, in time they had grandchildren, Andrew, Ruth, Hannah, Ben, Rory, and Sophie.
Ivor was not a passive grandfather, he worked hard to ensure his grandchildren flourished. In September 2017 he began having problems with his speech. An NHS nurse was concerned it might be a sign of dementia. We all hope that was not the case. Following an MRI scan in November we received the devastating news that he had plus Toma. He never had a pound of fat on him but when it came to Christmas time he did to hoover up the food and he enjoyed a Christmas meal.
So it was great to see at Christmas. But we did have a feeling it would be his last. Once we entered the new year he began to lose his mobility and eventually he was admitted to hospital. In 2018 surrounded by his wife and surrounded by his wife and daughters, he died. He had a good life and many people he taught at school. As a physically fit man, he should have lived longer. He should have celebrated his birthday last week.
I assumed that he had been unlucky with Glioblastoma. But it was not until I met the member for Mitcham and more than that I learned that only 25% of patients with this condition live longer than one year. And only one in 20 survive beyond five years. Despite this awful prognosis, like other rare cancers, the drugs to treat it have not changed in decades. That is why I knew I needed to introduce a bill that would help those fighting against Glioblastoma an other Rare Cancers Bill the tools they need to increase their efforts.
Over the increase their efforts. Over the last 15 years, thanks to the dedicated work of the survivors, we have seen a 10% rise in survival rates for those diagnosed with cancer. Globally new treatments are being rolled out, improving treatments and saving lives. This is not due to a lack of effort by charities or those affected by diseases. In the gallery today are members of charities fighting members of charities fighting against rare cancers and their uphill battle.
I want to thank them for their hard work in helping me to develop this bill in helping me. It aims to address the injustices faced by Glioblastoma patients and their families. What I would say, this is about making a difference to people's lives. It is about supporting families. The reason for this uphill battle is research into rare cancers is much less appealing to pharmaceutical companies when compared to more common conditions. The smaller patient populations, there is an increased logistical challenge in bringing patients together.
We are lacking a development strategy and there is no single source. Companies must undertake the costly endeavour of finding patients and verifying eligibility. Even if they succeed and the drug proves to be an effective treatment, companies face the challenge of selling the drug developed at great expense, to a small market. Ultimately these companies exist to return a profit for their shareholders. When given a choice between investing in potential treatment for rare cancer or a more common one, often rare cancer patients lose out.
Having accepted the challenges faced, let me know address what this bill aims to accomplish. I wish to raise four key measures. I will list them and describe them. Firstly, appoint a name to responsible lead for delivery of rare cancer research. Create a single registry of rare cancer trials. Create a registry of rare cancer patients. Build the evidence-based of those receiving these treatments. Let me explain why these are important. The bill will place a duty on the Secretary of State to facilitate more research related to rare cancer patients.
The appointment of a national specialty in the National Institute for Health and Care Research would provide the Secretary of State with advice on the design and planning of research to facilitate collaborations between relevant parties. This will ensure coordination and accountability for the delivery of new cancer research in the UK. Second, to increase access to clinical trials, through the Secretary of State's new duties this will be accomplished as part of the existing research, ensuring all trials are registered in a single place.
Thirdly, charities and clinicians Tommy more trials would be attracted to the UK if they had easy access. Establishing a single database of willing patients would remove a significant burden on researchers, in finding and verifying eligible people.
**** Possible New Speaker ****
I'm grateful and I grasped him on bringing forward this bill on this important subject. He is talking important subject. He is talking about research. This bill encloses two and three limit the application of his will to England and Wales. of his will to England and Wales. Can he explain why that is and what is happening in relation to these
**** Possible New Speaker ****
research issues in Scotland? I thank the honourable gentleman
**** Possible New Speaker ****
I thank the honourable gentleman four his question. The challenge is devolution. I am a huge fan of devolution but I do think often the UK is at its best when it works together. I do hope that in time we will see progress and we will work together on issues. There has been discussions across the UK about how we work together on this. So watch this space as part of the answer. Fourthly, have a government review examining how they can better incentivise pharmaceutical companies to invest in clinical trials.
This will consider how incentives could be provided for companies to trial the repurposed thing of new cancer treatments. We often hear about drug development for one cancer being used to defeat another. My bill aims to build the foundation to industrialise this approach with incentives. The EU has a similar system for incentivising testing of drugs. Those which have already been produced for adults. So this approach has been tried and tested. Together these measures will ensure we have the leadership and will remove barriers faced by researchers and pharmaceutical companies to run
**** Possible New Speaker ****
new trials in the UK. I thank the member for the powerful way he is introducing this powerful way he is introducing this bill. He recognised some of those pioneering teams like the one in Charing Cross Hospital under my Imperial College trust where a professor is leading the way in groundbreaking treatment research groundbreaking treatment research for gestation all disease and germ cell tumours? Does he agree that cell tumours? Does he agree that those centres need support to expand and share the research findings that and share the research findings that they are bringing to the rest of the NHS?
**** Possible New Speaker ****
Absolutely. I think there is fantastic expertise at the universities right across the UK. universities right across the UK. And I refer members to my Register of Interests in the university of Interests in the university sector. There is much more we can do to attract the best researchers in to attract the best researchers in the UK and build massively within UK universities. These measures will provide greater accountability for the delivery of new research. Please the delivery of new research.
Please don't just take my word for it. The bill was described as essential for cancer cures. The cancer task force said the bill could be truly transformative in the UK approach to research for rare and less common cancers. My friend at the Brain tumours charity said the Rare Cancers Bill is a framework for tangible and impactful change. I have to mention my daughter's connection with a charity. She is running a marathon in May and I wish running a marathon in May and I wish her well for that.
The bill is also supported by the following. I will list some of the groups that are supporting the bill today. Pancreatic cancer UK have been fantastic in their support for what we do. Cancer 52, an organisation. we do. Cancer 52, an organisation. The Angel Mums, this cancer trust. Inflammatory cancer accounts for 2% of breast cancer diagnosis in the UK G about 10% of deaths. Targeting ovarian cancer, the brain trust. The neurology foundation, the Tessa Jowell cancer mission, sarcoma UK, I met them this week.
A friend worked with them. Maggie's, Solving Cancer, the British trust, blood cancer UK, CC LG, the children's Cancer group. CTL support, neuroendocrine cancer UK. Melanoma focus. My lower UK. Hopeful Tomorrow. Yorkshire Cancer Research. The Tessa Jowell foundation. The UK support group. Blood Cancer research trust. Neurosciences foundation and aid appeal. They had a fantastic reception last week. I went along to that and having their support it felt like a key point in the progress we were making.
Building support for this bill. Great to see the Minister there as well. And I also have to say the cake there was More organisations have been getting in touch to say they want support, so I know many members in the chamber will have deeply personal stories to tell on behalf of constituents. We look forward to hearing those because it is so important to give people points. I will continue this by saying that the bill we are debating today has a real chance of making a difference, for too long cancer patients have been left on the sidelines, and this cannot go on.
We have a chance for the signal, and those diagnoses need to better chance of a full life. Let me pass this bill today to take the fight to the cancers and save lives. I commend this bill to the house.
**** Possible New Speaker ****
The question is that the bill now be read a second time, and before I call first speaker, I am aware that call first speaker, I am aware that this is a very personal debate. Members, so please feel free to
10:02
Mike Wood MP (Kingswinford and South Staffordshire, Conservative)
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-
Mike Wood MP (Kingswinford and South Staffordshire, Conservative)
leave the chamber if you need to. Let's look after each other today.
**** Possible New Speaker ****
I would like to start by congratulating the honourable gentleman on his fortune in being drawn in the Private Member's Bill ballot it also on his wisdom for ballot it also on his wisdom for picking up his very important issue to take forward having been to take forward having been similarly lucky and drawn from the Private Member's Bill ballot myself Private Member's Bill ballot myself a few weeks after I was first elected nearly a decade ago, I know elected nearly a decade ago, I know quite a barrage of calls and emails, the very sudden and slightly fleeting popularity that comes from coming out at the top of the ballot, and the very many, very worthy causes, campaigns that come your way to choose between, so the honourable gentleman couldn't have picked a better one than the build that was published in his bill today, and if he is never quite as popular as he was in the few hours after publication of the Private Member's Bill ballot, I know that he would willingly exchange all of that popularity in an instant for the difference that this legislation can make to so many lives across the country if and when we hope it is passed and implemented.
I stand today not just as a member of this house, but as a friend, as someone who was deeply moved by the pain of seeing someone I care about, someone who has become like family the struggle against an insidious disease because this bill is not just another piece of legislation. It is a cry for help. It is a plea for those who are fighting for their lives, a lifeline for families watching their loved ones slip away by bit, day after day.
Too often, those diagnoses, those diagnosed with a rare cancers are left stranded in the system that doesn't have the answers they need. We know what companies can do in drug development, but the horrible truth is that few people are going to be able or willing to invest the high amount of money of drug development knowing that 5000 drug candidates never make it to market for conditions that might require that drug, at most 1000 2000 times.
**** Possible New Speaker ****
There is a whole range of new, modern immunotherapy drugs which could be used on these cancers that could be used on these cancers that already exist and are used to treat other people but are simply not other people but are simply not other people but are simply not tried, and the cost of those trials, and the NHS repurposed in project
**** Possible New Speaker ****
should be doing them. The honourable lady is right, and no she approaches the subject with a huge amount of personal experience. We have seen already that, and long marketed drugs being applied for new purposes of new conditions, but without them as clinical trials, they will not be licensed, not be approved for prescription, and that is why this bill is so important because clinical trials are a distant hope for far too many, and many patients are left with the crashing gutwrenching words that there is nothing we can do.
And those words can be a death sentence, but they don't have to be, not if we act. And I have to tell you, many members of this house and staff will know my senior parliamentary assistant and dear friend. Dan is perhaps best known to people as the owner of Bella, his therapy should see where he was being treated for his third run through is often seen running through the palace of 1 Parliament St. Dan has worked for me since I was first elected in 2015, but he isn't just my parliamentary assistant.
He is someone who has become like family. He is a father, husband, and a full-time cancer survivor. For 14 years, he has fought this monster, each time feeling the ground slip more from under him as his options narrow, leaving him and his family with ever reducing hope. And we have seen him face unimaginable pain, the fear in his eyes each time the disease comes back, and he hears as doctors tell him that they don't know how much more his body can take, whether he can be put through that next course of radiotherapy.
Adults journey started with sample as simple as edits which the honourable gentleman was referring to. Headaches that no one thought were serious at the time. As a teenager, three GPs almost diagnosed her tumour, and for unknown reasons, the GP didn't want to send down for a scan, a simple scan to check that there were no malign causes which would have identified those tumours months earlier. It was a free venture for and I test that saved Dann's life because it wasn't until, by sheer luck, an optician noticed something wrong in his eyes that anyone realised the nightmare he was living.
So that option, that optician literally saved his life. But what followed has been nothing short of a nightmare. Range tumours, surgeries, radiotherapy. The heart- wrenching hope that every treatment might be the last, only for the disease to rear its ugly head again. And now the cancer has spread to his spine. His doctors and consultants have no answers. His options are dwindling, and yet his fight is far from over. He isn't just fighting himself before his two-year-old son Elijah.
Elijah deserves to grow up at his side, guiding and through lives milestones. Dan dreams of walking his son to school every day, of being there, his wedding, the moment that every parent should have the opportunity to see, and his wife Sonia has stayed through every hospital business, through every sleepless night, through every sleepless night, through every We can see that your future is slipping away. We have to make sure slipping away. We have to make sure that no patient has to face the horror facing this without hope.
It is about having families like Dan are fighting chance. Rare cancers get the treatment they so desperately need. It creates the national speciality to drive research and innovation and establishes the registry service to get patients to clinical trials really could save their lives. So this bill gives hope, a real chance for families who are facing the unimaginable. So, I stand here with a heart full of hope but also with a heavy heart because I know the time is not on their side.
Dan doesn't is not on their side. Dan doesn't have the luxury of waiting. No one diagnosed with right cancer has that luxury, so this is why this bill is so very, very urgent. We spend a lot of time in this place of talking about politics, but this is not about politics. This is about people like Dan who desperately need our help because cancer doesn't care about politics. It doesn't care about what background you come from, your age or gender, or what party you belong to.
It strikes indiscriminately. It takes what it wants and leaves devastation. That is why we must respond with urgency, with compassion, but most importantly, with action. So I strongly support this bill and I urge all members here today to stand with us, stand with families who were clinging to the hope that there is something more we can do. Stand with those like Dan who are fighting for more time, more moments, for more chances to hold their loved ones close.
Because the cost of inaction is not just measured in money. It is measured in precious lives lost. Let's pass this bill. Let's give people like Dan and his family the hope that they so desperately need. Let's give them a future. A future that is still
**** Possible New Speaker ****
within reach. I arrived today to speak about a bill that will increase the search bill that will increase the search funding focus on the development for funding focus on the development for rail forms of cancer. I thank the member for bringing this to me
**** Possible New Speaker ****
I would like to start by congratulating the honourable gentleman on his fortune in being drawn in the Private Member's Bill ballot it also on his wisdom for ballot it also on his wisdom for picking up his very important issue to take forward having been to take forward having been similarly lucky and drawn from the Private Member's Bill ballot myself Private Member's Bill ballot myself a few weeks after I was first elected nearly a decade ago, I know elected nearly a decade ago, I know quite a barrage of calls and emails, the very sudden and slightly fleeting popularity that comes from coming out at the top of the ballot, and the very many, very worthy causes, campaigns that come your way to choose between, so the honourable gentleman couldn't have picked a better one than the build that was published in his bill today, and if he is never quite as popular as he was in the few hours after publication of the Private Member's Bill ballot, I know that he would willingly exchange all of that popularity in an instant for the difference that this legislation can make to so many lives across the country if and when we hope it is passed and implemented.
I stand today not just as a member of this house, but as a friend, as someone who was deeply moved by the pain of seeing someone I care about, someone who has become like family the struggle against an insidious disease because this bill is not just another piece of legislation. It is a cry for help. It is a plea for those who are fighting for their lives, a lifeline for families watching their loved ones slip away by bit, day after day.
Too often, those diagnoses, those diagnosed with a rare cancers are left stranded in the system that doesn't have the answers they need. We know what companies can do in drug development, but the horrible truth is that few people are going to be able or willing to invest the high amount of money of drug development knowing that 5000 drug candidates never make it to market for conditions that might require that drug, at most 1000 2000 times.
**** Possible New Speaker ****
There is a whole range of new, modern immunotherapy drugs which could be used on these cancers that could be used on these cancers that already exist and are used to treat other people but are simply not other people but are simply not other people but are simply not tried, and the cost of those trials, and the NHS repurposed in project
**** Possible New Speaker ****
should be doing them. The honourable lady is right, and no she approaches the subject with a huge amount of personal experience. We have seen already that, and long marketed drugs being applied for new purposes of new conditions, but without them as clinical trials, they will not be licensed, not be approved for prescription, and that is why this bill is so important because clinical trials are a distant hope for far too many, and many patients are left with the crashing gutwrenching words that there is nothing we can do.
And those words can be a death sentence, but they don't have to be, not if we act. And I have to tell you, many members of this house and staff will know my senior parliamentary assistant and dear friend. Dan is perhaps best known to people as the owner of Bella, his therapy should see where he was being treated for his third run through is often seen running through the palace of 1 Parliament St. Dan has worked for me since I was first elected in 2015, but he isn't just my parliamentary assistant.
He is someone who has become like family. He is a father, husband, and a full-time cancer survivor. For 14 years, he has fought this monster, each time feeling the ground slip more from under him as his options narrow, leaving him and his family with ever reducing hope. And we have seen him face unimaginable pain, the fear in his eyes each time the disease comes back, and he hears as doctors tell him that they don't know how much more his body can take, whether he can be put through that next course of radiotherapy.
Adults journey started with sample as simple as edits which the honourable gentleman was referring to. Headaches that no one thought were serious at the time. As a teenager, three GPs almost diagnosed her tumour, and for unknown reasons, the GP didn't want to send down for a scan, a simple scan to check that there were no malign causes which would have identified those tumours months earlier. It was a free venture for and I test that saved Dann's life because it wasn't until, by sheer luck, an optician noticed something wrong in his eyes that anyone realised the nightmare he was living.
So that option, that optician literally saved his life. But what followed has been nothing short of a nightmare. Range tumours, surgeries, radiotherapy. The heart- wrenching hope that every treatment might be the last, only for the disease to rear its ugly head again. And now the cancer has spread to his spine. His doctors and consultants have no answers. His options are dwindling, and yet his fight is far from over. He isn't just fighting himself before his two-year-old son Elijah.
Elijah deserves to grow up at his side, guiding and through lives milestones. Dan dreams of walking his son to school every day, of being there, his wedding, the moment that every parent should have the opportunity to see, and his wife Sonia has stayed through every hospital business, through every sleepless night, through every sleepless night, through every We can see that your future is slipping away. We have to make sure slipping away. We have to make sure that no patient has to face the horror facing this without hope.
It is about having families like Dan are fighting chance. Rare cancers get the treatment they so desperately need. It creates the national speciality to drive research and innovation and establishes the registry service to get patients to clinical trials really could save their lives. So this bill gives hope, a real chance for families who are facing the unimaginable. So, I stand here with a heart full of hope but also with a heavy heart because I know the time is not on their side.
Dan doesn't is not on their side. Dan doesn't have the luxury of waiting. No one diagnosed with right cancer has that luxury, so this is why this bill is so very, very urgent. We spend a lot of time in this place of talking about politics, but this is not about politics. This is about people like Dan who desperately need our help because cancer doesn't care about politics. It doesn't care about what background you come from, your age or gender, or what party you belong to.
It strikes indiscriminately. It takes what it wants and leaves devastation. That is why we must respond with urgency, with compassion, but most importantly, with action. So I strongly support this bill and I urge all members here today to stand with us, stand with families who were clinging to the hope that there is something more we can do. Stand with those like Dan who are fighting for more time, more moments, for more chances to hold their loved ones close.
Because the cost of inaction is not just measured in money. It is measured in precious lives lost. Let's pass this bill. Let's give people like Dan and his family the hope that they so desperately need. Let's give them a future. A future that is still
**** Possible New Speaker ****
within reach. I arrived today to speak about a bill that will increase the search bill that will increase the search funding focus on the development for funding focus on the development for rail forms of cancer. I thank the member for bringing this to me
10:13
Josh Fenton-Glynn MP (Calder Valley, Labour)
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Josh Fenton-Glynn MP (Calder Valley, Labour)
member for bringing this to me today. Like many in this house, I rise because I lost a family member to a right cancer. And I also rise as a member of the Select Committee. In the last parliament, the Health and Care Act Select Committee conducted the future cancer enquiry which recommended that the UK should be leading on driving international action to tackle the outcomes for the least survival and least common cancers. This bill will do that. But as I say, the reason for speaking today is much more personal than today is much more personal than that.
My brother passed away. This bill can gift families more time and more treatable cancers, but for right cancers, we still have a way to go, and without focus, we cannot move further. There are over 700 diagnoses of these cancers, my search of Hansard only finds two mentions in the past 30 years. The member for Edinburgh South West will be the third. One of those mentions was following the death of my and that is why we need more focus.
In their evidence that Select Committee enquiry, they noted that while 47% of diagnoses of less common cancers, rare cancers account for 55% of deaths. Members across this house have our own cancer journeys, either ourselves or friends or loved ones. And I want to talk about my brother's journey. And not all cancer journeys have the outcomes we want, and even with this bill, we are still going to lose some people, more investment can give us time, and I would do anything for more time with my brother.
If you will indulge me, I would like to talk for a minute about the person who Alex was because the most important thing about Alex wasn't just how he died but how he lived and the marquee left in the world. He fit a lot into left in the world. He fit a lot into The band he joined the University toured with bands like Sound Garden and they reached the top 10 in Japan. I have always been tremendously proud to talk about my brother.
The subsequent time the National Trust help properties to become profitable, working to restore nature and working with local authorities. His last major project was creating in woodlands near London Liverpool. But most of all I was proud of the person he was. He was always funny. He had a surreal wit. He was unfailingly kind in that sort of non-toxic model of masculinity that the world needs more of. I remember the humour and love of the best man's speech he gave for me.
And I will never not be sorry that I have written eulogies from my brother but never a best man speech. Whilst preparing for Christmas in 2023, I got a call from Alex and he asked if I had a minute to talk. Which is unlike him because he wouldn't generally be over serious. He said he had a lump on the side of his face that was, in his words, unsightly but not overly concerning. It might be cancer but there were a number of other things it could be.
And if it was cancer was likely a very treatable form. He instructed me to be aware of it but not make a big deal of it because he did not want to worry my mum. Later it transpired that the prognosis was good that they would operate in the cancer continued to grow. His operation took 14 hours. The thing about Alex's tumour is that the version of the illness he had was high growth. That meant mutated faster, it is something that has only been identified 100 cases.
Something that no doubt could have been identified earlier if we had known more about cancers like his. Last spring in the garden of my mum during a hushed conversation, they told me that Alex might only have 18 months to live. I was trying not to make a big deal of it with my two year old son there but sometimes you need to hug someone. Every update got worse. Until I took a day off during the election campaign to visit him at the hospital because his lung had collapsed.
But then because it is never a straight line, his health improved. He got to sit up there in the gallery to watch my Maiden speech. We went to a concert together in Halifax. Then it got worse. On Christmas Eve last year he was hospitalised again. When he returned home, we knew he was coming home to die. I can't say enough about his wonderful friends particularly Matt and Sarah and their credible family who cared for him at the end.
And all of us would have spent more time at his bedside if we could. Time for people you love is a privilege. And that is what this bill is about. Giving people more time with those they love, perhaps even a full lifetime together. And in the cases where the cancer is worse and can't be treated or cured it is about giving more time, better health, and an understanding of the journey people are on. More special moments, be they a concert, reading a story to a child, Alex read the best stories.
And time to organise what you left behind. People who developed cancers that are rare still matter. They still deserve more time. The work to help people like Alex and the future must start today. This government has a renewed emphasis on tackling Rare Cancers Bill, both in memory of the sister of the honourable Member for Mitcham and Morden. For Tessa Jowell, and for countless other campaigners including those in the gallery today. What we need is focus.
We need determination to respond quickly. I thank this house for indulging me today. Let's be that world leader in tackling rare cancers that is so desperately needed. Let's give families special time with those that they love the most. Let's pass this bill today.
**** Possible New Speaker ****
Thank you Madame Deputy Speaker. I want to thank the audible member I want to thank the audible member for Edinburgh South West for bringing this legislation before the house today. I pay tribute to him. house today. I pay tribute to him. And honourable members who have already spoken so movingly on the already spoken so movingly on the subject. And to the member for Mitcham and Morden for her tireless Mitcham and Morden for her tireless advocacy. The many forms of cancer advocacy.
The many forms of cancer is rare. Taken together rare cancers make up almost one in five of all cancer diagnosis. Each incident, each diagnosis, each prognosis has the same devastating impact on families throughout this country. My own being no exception. My brother- in-law who is 53 was diagnosed with stage IV glioblastoma this time last year. At that time he was serving in the Royal Air Force, one of his tours including Afghanistan and Iraq. He was given between nine and 12 months to live.
For his wife Claire and for his five children, the news changed everything. In September I joined him and his family and over 400 loved ones at RAF Denson in Oxfordshire for what was called a farewell ceremony. An event to allow everyone to be together with him potentially for one last time. You can imagine how difficult yet and moving that was. A few weeks later, he was lucky enough to come across a pioneering rain surgeon who has been trialling treatment.
This employs radio frequencies to target and treat malignant cancer tumour cells. It is not currently available on the NHS and each one-hour treatment costs and each one-hour treatment costs £1000 a tumour like Pip's requires 36 sessions. For most people that money and course of care is out of reach. But the 400 friends and family who attended his farewell family who attended his farewell dinner set up a Go Found Me page. We all love him which is why we put as much money as we could.
But cancers like this bring people together to fight it and I want the government to share that result. Since starting these monthly sessions in December, the first MRI scan showed his Brain tumours had reduced in size from 7 tumours had reduced in size from 7 cm to 1.7cm. He is still alive and watching today in European studies suggesting that this treatment could extend life for between four and five years. For his five children that time is everything. But this is not the whole of my experience with glioblastoma.
2021, my husband John's best friend, Ian, died from the disease. His widow is in the gallery right now. Almost unbelievably, Nicholas sister Karen, who had done so much in helping her was a self diagnosed with stage IV glioblastoma last year and died a few months later. I know that others in this chamber and in the gallery have had their lives touched by glioblastoma. I'm sure that they will agree that in the past three decades there has been an unacceptable lack of progress made on this disease will stop the lack of progress in developing new treatments, making them widely accessible and keeping those with glioblastoma here with their loved ones.
In the past 50 years cancer survival rates in the UK have doubled. Whereas in the 1970s only to 25% diagnosed expected to live 10 years, today over half do. This is a record of staggering success and represents countless lives extended and richer, fuller, and save. When it comes to glioblastoma, however, as we have heard there is far less to celebrate. The chances of living a decade with the disease is one in 100. The gains in life expectancy in recent decades can be measured in months.
Precious, yes, but not enough, not nearly enough. Glioblastoma is a wreck and but it is also an exceptionally lethal one. Brain tumours are the biggest cancer killer of children and adults under the age of 40. Yet in recent years glioblastoma is has been apportioned
My brother passed away. This bill can gift families more time and more treatable cancers, but for right cancers, we still have a way to go, and without focus, we cannot move further. There are over 700 diagnoses of these cancers, my search of Hansard only finds two mentions in the past 30 years. The member for Edinburgh South West will be the third. One of those mentions was following the death of my and that is why we need more focus.
In their evidence that Select Committee enquiry, they noted that while 47% of diagnoses of less common cancers, rare cancers account for 55% of deaths. Members across this house have our own cancer journeys, either ourselves or friends or loved ones. And I want to talk about my brother's journey. And not all cancer journeys have the outcomes we want, and even with this bill, we are still going to lose some people, more investment can give us time, and I would do anything for more time with my brother.
If you will indulge me, I would like to talk for a minute about the person who Alex was because the most important thing about Alex wasn't just how he died but how he lived and the marquee left in the world. He fit a lot into left in the world. He fit a lot into The band he joined the University toured with bands like Sound Garden and they reached the top 10 in Japan. I have always been tremendously proud to talk about my brother.
The subsequent time the National Trust help properties to become profitable, working to restore nature and working with local authorities. His last major project was creating in woodlands near London Liverpool. But most of all I was proud of the person he was. He was always funny. He had a surreal wit. He was unfailingly kind in that sort of non-toxic model of masculinity that the world needs more of. I remember the humour and love of the best man's speech he gave for me.
And I will never not be sorry that I have written eulogies from my brother but never a best man speech. Whilst preparing for Christmas in 2023, I got a call from Alex and he asked if I had a minute to talk. Which is unlike him because he wouldn't generally be over serious. He said he had a lump on the side of his face that was, in his words, unsightly but not overly concerning. It might be cancer but there were a number of other things it could be.
And if it was cancer was likely a very treatable form. He instructed me to be aware of it but not make a big deal of it because he did not want to worry my mum. Later it transpired that the prognosis was good that they would operate in the cancer continued to grow. His operation took 14 hours. The thing about Alex's tumour is that the version of the illness he had was high growth. That meant mutated faster, it is something that has only been identified 100 cases.
Something that no doubt could have been identified earlier if we had known more about cancers like his. Last spring in the garden of my mum during a hushed conversation, they told me that Alex might only have 18 months to live. I was trying not to make a big deal of it with my two year old son there but sometimes you need to hug someone. Every update got worse. Until I took a day off during the election campaign to visit him at the hospital because his lung had collapsed.
But then because it is never a straight line, his health improved. He got to sit up there in the gallery to watch my Maiden speech. We went to a concert together in Halifax. Then it got worse. On Christmas Eve last year he was hospitalised again. When he returned home, we knew he was coming home to die. I can't say enough about his wonderful friends particularly Matt and Sarah and their credible family who cared for him at the end.
And all of us would have spent more time at his bedside if we could. Time for people you love is a privilege. And that is what this bill is about. Giving people more time with those they love, perhaps even a full lifetime together. And in the cases where the cancer is worse and can't be treated or cured it is about giving more time, better health, and an understanding of the journey people are on. More special moments, be they a concert, reading a story to a child, Alex read the best stories.
And time to organise what you left behind. People who developed cancers that are rare still matter. They still deserve more time. The work to help people like Alex and the future must start today. This government has a renewed emphasis on tackling Rare Cancers Bill, both in memory of the sister of the honourable Member for Mitcham and Morden. For Tessa Jowell, and for countless other campaigners including those in the gallery today. What we need is focus.
We need determination to respond quickly. I thank this house for indulging me today. Let's be that world leader in tackling rare cancers that is so desperately needed. Let's give families special time with those that they love the most. Let's pass this bill today.
**** Possible New Speaker ****
Thank you Madame Deputy Speaker. I want to thank the audible member I want to thank the audible member for Edinburgh South West for bringing this legislation before the house today. I pay tribute to him. house today. I pay tribute to him. And honourable members who have already spoken so movingly on the already spoken so movingly on the subject. And to the member for Mitcham and Morden for her tireless Mitcham and Morden for her tireless advocacy. The many forms of cancer advocacy.
The many forms of cancer is rare. Taken together rare cancers make up almost one in five of all cancer diagnosis. Each incident, each diagnosis, each prognosis has the same devastating impact on families throughout this country. My own being no exception. My brother- in-law who is 53 was diagnosed with stage IV glioblastoma this time last year. At that time he was serving in the Royal Air Force, one of his tours including Afghanistan and Iraq. He was given between nine and 12 months to live.
For his wife Claire and for his five children, the news changed everything. In September I joined him and his family and over 400 loved ones at RAF Denson in Oxfordshire for what was called a farewell ceremony. An event to allow everyone to be together with him potentially for one last time. You can imagine how difficult yet and moving that was. A few weeks later, he was lucky enough to come across a pioneering rain surgeon who has been trialling treatment.
This employs radio frequencies to target and treat malignant cancer tumour cells. It is not currently available on the NHS and each one-hour treatment costs and each one-hour treatment costs £1000 a tumour like Pip's requires 36 sessions. For most people that money and course of care is out of reach. But the 400 friends and family who attended his farewell family who attended his farewell dinner set up a Go Found Me page. We all love him which is why we put as much money as we could.
But cancers like this bring people together to fight it and I want the government to share that result. Since starting these monthly sessions in December, the first MRI scan showed his Brain tumours had reduced in size from 7 tumours had reduced in size from 7 cm to 1.7cm. He is still alive and watching today in European studies suggesting that this treatment could extend life for between four and five years. For his five children that time is everything. But this is not the whole of my experience with glioblastoma.
2021, my husband John's best friend, Ian, died from the disease. His widow is in the gallery right now. Almost unbelievably, Nicholas sister Karen, who had done so much in helping her was a self diagnosed with stage IV glioblastoma last year and died a few months later. I know that others in this chamber and in the gallery have had their lives touched by glioblastoma. I'm sure that they will agree that in the past three decades there has been an unacceptable lack of progress made on this disease will stop the lack of progress in developing new treatments, making them widely accessible and keeping those with glioblastoma here with their loved ones.
In the past 50 years cancer survival rates in the UK have doubled. Whereas in the 1970s only to 25% diagnosed expected to live 10 years, today over half do. This is a record of staggering success and represents countless lives extended and richer, fuller, and save. When it comes to glioblastoma, however, as we have heard there is far less to celebrate. The chances of living a decade with the disease is one in 100. The gains in life expectancy in recent decades can be measured in months.
Precious, yes, but not enough, not nearly enough. Glioblastoma is a wreck and but it is also an exceptionally lethal one. Brain tumours are the biggest cancer killer of children and adults under the age of 40. Yet in recent years glioblastoma is has been apportioned
10:26
Monica Harding MP (Esher and Walton, Liberal Democrat)
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Monica Harding MP (Esher and Walton, Liberal Democrat)
between one and 2% of UK cancer funding. Honour Dame Tessa Jowell, the government announced a doubling of research into Brain tumours. But six years later it was rightly six years later it was rightly reported that less the half pledged reported that less the half pledged money had been delivered. With the money had been delivered. With the government now update the house on government now update the house on how the remaining funds have been spent and are being spent? Will the Minister assure me that as a national cancer plan is developed, alongside the NHS 10 year plan, they'll be a deliberate and specific consideration given to glioblastoma's? The medicines and regulatory authority works to incentivise research, granting exclusivity for manufacturers and making it cheaper to bring drugs to market once they are developed.
Clearly when it comes to glioblastoma's they have not
**** Possible New Speaker ****
adequately succeeded. With the member give way? I have
**** Possible New Speaker ****
With the member give way? I have been to see the MHR essay numerous times and I've asked them about times and I've asked them about repurposed drugs. Many pharmaceutical companies are worried about the repurchasing of drugs in case the research on glioblastoma case the research on glioblastoma affects the main cause for the having the drug, and therefore makes it less successful. We have besieged them to treat glioblastoma separately. Would she support such a move?
**** Possible New Speaker ****
I thank her for her intervention. I will of course support this move and I urge the government to listen and I urge the government to listen and take action. When it comes to glioblastoma's, getting this right glioblastoma's, getting this right is vital. I want to stress that despite minor breakthroughs, exciting innovations and promising exciting innovations and promising research leads, this disease is simply not seen the improvement in survival rates that most cancers have. To put it bluntly, glioblastoma remains a death sentence.
An increasingly common one sentence. An increasingly common one in the UK cancer diagnosis has increased and this trend is largely due to increased life expectancy. In the past 30 years, rate and UK have more than doubled far beyond. More people are developing this disease and that we have failed to make meaningful strides when it comes to treatment cure even when it comes to giving those with glioblastoma a little more time to with those dearest to them. Now is the moment to do something about it.
So I welcome today's legislation I will commit emphasis on improving research. I have already touched on drug development. But I also welcome the vision is to facilitate clinical trials. The grim reality is that for glioblastoma, these trials are hard to conduct. There are too few patients and often their life expectancies are too limited. Anything that can be done to accelerate the process by which eligible patients are connected with research faster and with less friction is valuable and I'm glad to see it.
I want to emphasise also that there are great opportunities in front of us to accelerate research and to make brought advances in the battle against rare cancers. Along with almost half of my apology colleagues I'm proud to pledge my support for that moonshot object would advocate a boost of around 20 Mr Lim pounds over five years for research into basic biology on invasive logging of breast cancer with a view to developing new treatments. Despite this type of breast cancer being the second most common form of breast cancer, it is treated as a rare cancer.
It is difficult to diagnose and often present fewer symptoms than invasive ductal carcinoma.
**** Possible New Speaker ****
Is used as -- she is explaining it very well and invasive ductal carcinoma is not counted as a rare carcinoma is not counted as a rare cancer I would ask if it can be whitened but I think she has
**** Possible New Speaker ****
whitened but I think she has expended well. It has many characteristics of a rare. I thank him for giving way. It is
**** Possible New Speaker ****
I thank him for giving way. It is treated in many ways like a rare disease but it is difficult to diagnose through a standard screening mammogram and often screening mammogram and often present fewer symptoms than invasive ductal carcinoma. I recently met with my constituent named Kate was diagnosed with breast cancer in 2023. She explained to me that because muscle breast cancer research is based on ductal variance, women like her are diagnosed later and often receive treatment orientated towards cancer with different biology.
These are factors which result in higher rates of occurrence and lower survival rates. Kate has been in remission for more than a year now since then has been an advocate for research. One behalf of her I want to ask Mr, as she met with the moonshot campaigners and is the government taking the steps to increase research into cancer? And what consideration has she given to updating NICE guidelines to use MRI to earlier diagnosed not be the breast cancer? In fighting cancer we should set ambitious goals and innovations we meet them.
As with the Apollo project, research into seemingly narrow things often have spillover effects due to vast and anticipated benefits. This is often true of drugs. Take one example, the drug has not changed the game for a rare form of leukaemia it is now used for other Rare Cancers Bill stop the British pharmaceutical development sector is exceptionally strong and now is a moment of potential. From gene mapping, on AI, on biotech and immunotherapy and cancer vaccines, the UK is in a position to transform lives and to save them.
I recognise the limited scope of this bill but I nonetheless believe it is vital. This house must take a keen interest in accelerating and incentivising research into rare cancers including glioblastoma's and this legislation advances that goal. I want to speak briefly about young I want to speak briefly about young A lovely girl, aged 18, Maddy was diagnosed with a soft parts I came. She had just started university. A sarcoma is an uncommon cancer which can occur anywhere in the body.
All cancers are considered to be rare, but in Maddy's case, the classification was ultra rare and in consequence, it took five months for her to receive a diagnosis. She had just started university at the time and said that it felt like her life was falling apart. It was a very lonely place. Maddy's diagnosis was almost 10 years ago now, and there are no approved treatments for the rare cancer and she is currently undergoing a clinical trial. It is likely that she will remain on trial for life.
She is brave and will not let cancer define her but I want to bring her up because cancer in young people is so uncommon that it is often diagnosed later. We know that the later a diagnosis comes, the more likely it is for the government to ensure that rare cancers affecting young people are caught earlier. Finally, I am reminded something Emily Dickinson said about hope. I heard it in the cellist land and on the strangest see. We must get this right.
We must give sufferers hope. We know it to the family, declares wife and Nicola in the gallery and her sons, and so many others who have suffered and who are here with us today. I believe we can. believe we can.
Clearly when it comes to glioblastoma's they have not
**** Possible New Speaker ****
adequately succeeded. With the member give way? I have
**** Possible New Speaker ****
With the member give way? I have been to see the MHR essay numerous times and I've asked them about times and I've asked them about repurposed drugs. Many pharmaceutical companies are worried about the repurchasing of drugs in case the research on glioblastoma case the research on glioblastoma affects the main cause for the having the drug, and therefore makes it less successful. We have besieged them to treat glioblastoma separately. Would she support such a move?
**** Possible New Speaker ****
I thank her for her intervention. I will of course support this move and I urge the government to listen and I urge the government to listen and take action. When it comes to glioblastoma's, getting this right glioblastoma's, getting this right is vital. I want to stress that despite minor breakthroughs, exciting innovations and promising exciting innovations and promising research leads, this disease is simply not seen the improvement in survival rates that most cancers have. To put it bluntly, glioblastoma remains a death sentence.
An increasingly common one sentence. An increasingly common one in the UK cancer diagnosis has increased and this trend is largely due to increased life expectancy. In the past 30 years, rate and UK have more than doubled far beyond. More people are developing this disease and that we have failed to make meaningful strides when it comes to treatment cure even when it comes to giving those with glioblastoma a little more time to with those dearest to them. Now is the moment to do something about it.
So I welcome today's legislation I will commit emphasis on improving research. I have already touched on drug development. But I also welcome the vision is to facilitate clinical trials. The grim reality is that for glioblastoma, these trials are hard to conduct. There are too few patients and often their life expectancies are too limited. Anything that can be done to accelerate the process by which eligible patients are connected with research faster and with less friction is valuable and I'm glad to see it.
I want to emphasise also that there are great opportunities in front of us to accelerate research and to make brought advances in the battle against rare cancers. Along with almost half of my apology colleagues I'm proud to pledge my support for that moonshot object would advocate a boost of around 20 Mr Lim pounds over five years for research into basic biology on invasive logging of breast cancer with a view to developing new treatments. Despite this type of breast cancer being the second most common form of breast cancer, it is treated as a rare cancer.
It is difficult to diagnose and often present fewer symptoms than invasive ductal carcinoma.
**** Possible New Speaker ****
Is used as -- she is explaining it very well and invasive ductal carcinoma is not counted as a rare carcinoma is not counted as a rare cancer I would ask if it can be whitened but I think she has
**** Possible New Speaker ****
whitened but I think she has expended well. It has many characteristics of a rare. I thank him for giving way. It is
**** Possible New Speaker ****
I thank him for giving way. It is treated in many ways like a rare disease but it is difficult to diagnose through a standard screening mammogram and often screening mammogram and often present fewer symptoms than invasive ductal carcinoma. I recently met with my constituent named Kate was diagnosed with breast cancer in 2023. She explained to me that because muscle breast cancer research is based on ductal variance, women like her are diagnosed later and often receive treatment orientated towards cancer with different biology.
These are factors which result in higher rates of occurrence and lower survival rates. Kate has been in remission for more than a year now since then has been an advocate for research. One behalf of her I want to ask Mr, as she met with the moonshot campaigners and is the government taking the steps to increase research into cancer? And what consideration has she given to updating NICE guidelines to use MRI to earlier diagnosed not be the breast cancer? In fighting cancer we should set ambitious goals and innovations we meet them.
As with the Apollo project, research into seemingly narrow things often have spillover effects due to vast and anticipated benefits. This is often true of drugs. Take one example, the drug has not changed the game for a rare form of leukaemia it is now used for other Rare Cancers Bill stop the British pharmaceutical development sector is exceptionally strong and now is a moment of potential. From gene mapping, on AI, on biotech and immunotherapy and cancer vaccines, the UK is in a position to transform lives and to save them.
I recognise the limited scope of this bill but I nonetheless believe it is vital. This house must take a keen interest in accelerating and incentivising research into rare cancers including glioblastoma's and this legislation advances that goal. I want to speak briefly about young I want to speak briefly about young A lovely girl, aged 18, Maddy was diagnosed with a soft parts I came. She had just started university. A sarcoma is an uncommon cancer which can occur anywhere in the body.
All cancers are considered to be rare, but in Maddy's case, the classification was ultra rare and in consequence, it took five months for her to receive a diagnosis. She had just started university at the time and said that it felt like her life was falling apart. It was a very lonely place. Maddy's diagnosis was almost 10 years ago now, and there are no approved treatments for the rare cancer and she is currently undergoing a clinical trial. It is likely that she will remain on trial for life.
She is brave and will not let cancer define her but I want to bring her up because cancer in young people is so uncommon that it is often diagnosed later. We know that the later a diagnosis comes, the more likely it is for the government to ensure that rare cancers affecting young people are caught earlier. Finally, I am reminded something Emily Dickinson said about hope. I heard it in the cellist land and on the strangest see. We must get this right.
We must give sufferers hope. We know it to the family, declares wife and Nicola in the gallery and her sons, and so many others who have suffered and who are here with us today. I believe we can. believe we can.
10:34
Dame Siobhain McDonagh MP (Mitcham and Morden, Labour)
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Dame Siobhain McDonagh MP (Mitcham and Morden, Labour)
I would like to start through you to apologise to the young man on the tube from the Northern line from colliers with this morning for having to spend his journey looking at me sobbing my heart out. It must have been a very odd experience and I wanted to say to him I am not just sad, I am angry. I am angry at the NHS, I am angry at the MHR essay, I am angry beyond belief at the National in through research.
It should be renamed as the National in force some that doesn't do very much at great public expense. These institutions are bedevilled by wanting to carry on doing what they have always done. It does not get them sacked. Nobody ever got sacked for continuing to do the same thing. You are only sacked if you do something different, and my God, as this morning not told us that we need to be doing something different. We have the tools to do something different, but the people in positions of power and responsibility choose not to.
We have the best health system in the world for potential drug trials. A uniform system, well-trained doctors, great scientists, great universities, and great hospitals, but do we do it? No. Do we fail people every single day? Yes. Do we threaten those doctors who tried to do something different? Those groundbreaking oncologists are looking over their shoulder to wait for the regulator to come and get them when one of their colleagues grasses them up. This is part of our intellectual services institution in this country.
I can feel sorry for myself and for my loss, but I don't want that. I want things to change. And I believe that all of us from all parties need to run fast and break things. And provide a challenge to those people who are currently running our systems. Why is it that with the most universal health system in the world, with the re-purpose in drug project, that we are not re-purpose in drugs for people with rare cancers? Why are they not doing it for neoplastic? In May, we will open a drug trial at UCL and UCL H in Margaret's memory to trial one such drug.
That has been in the system for years. Why is it that we organised a dinner with the former Prime Minister Tony Blair, that people run marathons and sold cakes and scones in beautiful Cornwall villages? It gave us a great deal to do those things, but why is it that our system means that we have to do it? Why is it that the trial we are going to open under the amazing Paul Mulholland in May is only based on one trial? It is only based in one trust because if we started to negotiate with all other hospital trusts who are experts in this field, it would take us to years to get started.
Why is it that we are outstripped by Israel, by Spain, by America, by any number of countries because we can't get our act together to start a trial because each hospital trust is arguing to renegotiate every trial and every plan, and this is not new. It was raised by Lord O'Shaughnessy in his great report on clinical trials which is now two years old and we have made no progress. We have made no progress under the former government and we have made no progress under our government.
The 40 million given to the NHI are into thousand 17 four neoplastic man and brain cancer trials has not been spent. Can any member of the house explained to me how that is humanly possible? Do we not have the drugs that we could trial? Yes, of course we do. Trials aren't that complicated. We can do them if we choose to. We have the doctors to do them but we just have to want to actually go and change them.
I want to apologise to my honourable friend on the Frontbench when she came to talk to me in the tearoom this morning. She got this at very fast pace. But I have met now for wonderful councillors, two from the conservative side, two from the Labour side, all dedicated, all wanting to sort this out, but you can't do this by edict, by hoping, wishing. Unless you change things and I daresay unless you remove some people, it is never ever going to happen.
All the institutions continue to exist because they don't continue to exist because they don't do things differently. If you are diagnosed with a neoplastic, you will get the same treatment that you would have got 25 years ago. You will have your tumour removed. When you have your tumour removed, you will be delighted it is gone, only it's not gone. It's coming back. You will be given eight weeks radiotherapy. It is brutal. It will help you for a while, but it will come back.
Then you get given chemotherapy. It was approved at the beginning of the 2000's. It will help but it is coming back. But you have to be able to withstand that drug yourself. Margaret couldn't do that. By March, five months into her being diagnosed, she couldn't take that a kidney's collapse and what happens then? If you've got the money, and we had the money and had good friends, and at this point, I would like to thank Lord were he dally for the friendship he chose to throughout Margaret's journey and the treatment he has experienced from the press which is currently appalling.
He helped us on our way, but if you are with somebody with no money and you can't fundraiser, your life ends. If there is nothing on the NHS, then you find a way, and I am really grateful that the honourable member with a brother- in-law on the machine. My sister fundraiser that machine because we had to go to dazzled off, and so we brought it here. It is great that he is receiving so much benefit from it, and I know many people are too.
But why is it that the NHS is so risk averse that they will not allow slightly alternative therapies for their cancers. He is happy that people get on a plane and go to a defunct country. I told stories of holding my sister's header she was seeking a bucket on terminal five Heathrow airport. I've carrying her in an effort to hope that the SU address would not see how she was, or of lying next to her over the night hoping that she would be alive in the morning because what would I do in a hotel in Germany in a country where I couldn't speak the language? That is my experience, but I am only one of thousands and thousands of people including children who do this every year because our system will not allow treatment.
Why? Why is it that we can't change things? Why is it that we don't get up every single day and want to cure something? I don't know about other honourable members, but when I joined the Labour Party, when I became an MP, every day I get up and hope that we can make things better in some way. I don't understand why our systems don't want to do the same thing, and I want to understand but it is beyond me.
If there are drugs there that could possibly cure or give longer life, why don't we trial them? It is not the end of our ability. We will raise the money to do it if we don't. We just want the opportunity, and I don't know why we don't have that wish to achieve, and I was given some hope yesterday at NHS England because something needs to change. I don't know whether it is the right thing or the wrong thing, but we need to liberate people to do things and let's face it, in the end, the only thing that changes things are people who are well motivated and ready to take a risk.
Beyond that, people will continue to die, to go to other countries, to have to spend large amounts of money and people not lucky enough to be in that position will just simply diaper maturely. I want to thank my honourable friend for introducing this bill. I want to thank him for the courtesy he has always shown me which has been difficult at times as I such shouting at him in portcullis House about how everything was House about how everything was In my, moments understand that progress begins with small steps.
I'm frustrated those steps are too small. I'm delighted there will be one database for trials, but if there are no trials, the database does not get us very far. We will have a report on the drug act in 18 months time. In that period over 3500 people will be diagnosed with glioblastoma and many will be dead. Why is it going to take us 18 months to do that? Why can't we change it now? Why, in spite of the huge support we have had from the Secretary of State for Health for this bill could we not get something much more fierce in the bill? It is not a criticism, it is an observation.
I know progress begins slowly and I'm so grateful that he has taken up this bill and that he has the calm demeanour that I lack because I don't think the whips would have accepted and the thing I would have come up with as a Private Members' Bill. But we need a revolutionary attitude to these things. The other wants to see progress and harness progress or we will come back next year or the year after all the year after that asking why there is no progress.
And we all individually and commonly needs to dedicate ourselves to that progress and to keep asking the questions and being angry, and simply to refuse to accept that nothing can be done.
**** Possible New Speaker ****
I call Charlie Maynard. Thank you Madame Deputy Speaker. I would like to thank the honourable member from Edinburgh South West and member from Edinburgh South West and the honourable member from Mitcham and Morden and the honourable member for Birmingham Erdington because I for Birmingham Erdington because I really enjoyed working with you all really enjoyed working with you all all with our own stories. I should give my own personal story, my give my own personal story, my sister Georgie is there.
She was sister Georgie is there. She was diagnosed with a GBM two is ago. I would like to say she is alive and well but she is alive and she is doing well. And she has been brave. She has been determined and she has been inspirational to all of us. It is particularly painful as she is the mother of three and a wife and a daughter and a sister. So we have a lot to focus on. And it is on us
It should be renamed as the National in force some that doesn't do very much at great public expense. These institutions are bedevilled by wanting to carry on doing what they have always done. It does not get them sacked. Nobody ever got sacked for continuing to do the same thing. You are only sacked if you do something different, and my God, as this morning not told us that we need to be doing something different. We have the tools to do something different, but the people in positions of power and responsibility choose not to.
We have the best health system in the world for potential drug trials. A uniform system, well-trained doctors, great scientists, great universities, and great hospitals, but do we do it? No. Do we fail people every single day? Yes. Do we threaten those doctors who tried to do something different? Those groundbreaking oncologists are looking over their shoulder to wait for the regulator to come and get them when one of their colleagues grasses them up. This is part of our intellectual services institution in this country.
I can feel sorry for myself and for my loss, but I don't want that. I want things to change. And I believe that all of us from all parties need to run fast and break things. And provide a challenge to those people who are currently running our systems. Why is it that with the most universal health system in the world, with the re-purpose in drug project, that we are not re-purpose in drugs for people with rare cancers? Why are they not doing it for neoplastic? In May, we will open a drug trial at UCL and UCL H in Margaret's memory to trial one such drug.
That has been in the system for years. Why is it that we organised a dinner with the former Prime Minister Tony Blair, that people run marathons and sold cakes and scones in beautiful Cornwall villages? It gave us a great deal to do those things, but why is it that our system means that we have to do it? Why is it that the trial we are going to open under the amazing Paul Mulholland in May is only based on one trial? It is only based in one trust because if we started to negotiate with all other hospital trusts who are experts in this field, it would take us to years to get started.
Why is it that we are outstripped by Israel, by Spain, by America, by any number of countries because we can't get our act together to start a trial because each hospital trust is arguing to renegotiate every trial and every plan, and this is not new. It was raised by Lord O'Shaughnessy in his great report on clinical trials which is now two years old and we have made no progress. We have made no progress under the former government and we have made no progress under our government.
The 40 million given to the NHI are into thousand 17 four neoplastic man and brain cancer trials has not been spent. Can any member of the house explained to me how that is humanly possible? Do we not have the drugs that we could trial? Yes, of course we do. Trials aren't that complicated. We can do them if we choose to. We have the doctors to do them but we just have to want to actually go and change them.
I want to apologise to my honourable friend on the Frontbench when she came to talk to me in the tearoom this morning. She got this at very fast pace. But I have met now for wonderful councillors, two from the conservative side, two from the Labour side, all dedicated, all wanting to sort this out, but you can't do this by edict, by hoping, wishing. Unless you change things and I daresay unless you remove some people, it is never ever going to happen.
All the institutions continue to exist because they don't continue to exist because they don't do things differently. If you are diagnosed with a neoplastic, you will get the same treatment that you would have got 25 years ago. You will have your tumour removed. When you have your tumour removed, you will be delighted it is gone, only it's not gone. It's coming back. You will be given eight weeks radiotherapy. It is brutal. It will help you for a while, but it will come back.
Then you get given chemotherapy. It was approved at the beginning of the 2000's. It will help but it is coming back. But you have to be able to withstand that drug yourself. Margaret couldn't do that. By March, five months into her being diagnosed, she couldn't take that a kidney's collapse and what happens then? If you've got the money, and we had the money and had good friends, and at this point, I would like to thank Lord were he dally for the friendship he chose to throughout Margaret's journey and the treatment he has experienced from the press which is currently appalling.
He helped us on our way, but if you are with somebody with no money and you can't fundraiser, your life ends. If there is nothing on the NHS, then you find a way, and I am really grateful that the honourable member with a brother- in-law on the machine. My sister fundraiser that machine because we had to go to dazzled off, and so we brought it here. It is great that he is receiving so much benefit from it, and I know many people are too.
But why is it that the NHS is so risk averse that they will not allow slightly alternative therapies for their cancers. He is happy that people get on a plane and go to a defunct country. I told stories of holding my sister's header she was seeking a bucket on terminal five Heathrow airport. I've carrying her in an effort to hope that the SU address would not see how she was, or of lying next to her over the night hoping that she would be alive in the morning because what would I do in a hotel in Germany in a country where I couldn't speak the language? That is my experience, but I am only one of thousands and thousands of people including children who do this every year because our system will not allow treatment.
Why? Why is it that we can't change things? Why is it that we don't get up every single day and want to cure something? I don't know about other honourable members, but when I joined the Labour Party, when I became an MP, every day I get up and hope that we can make things better in some way. I don't understand why our systems don't want to do the same thing, and I want to understand but it is beyond me.
If there are drugs there that could possibly cure or give longer life, why don't we trial them? It is not the end of our ability. We will raise the money to do it if we don't. We just want the opportunity, and I don't know why we don't have that wish to achieve, and I was given some hope yesterday at NHS England because something needs to change. I don't know whether it is the right thing or the wrong thing, but we need to liberate people to do things and let's face it, in the end, the only thing that changes things are people who are well motivated and ready to take a risk.
Beyond that, people will continue to die, to go to other countries, to have to spend large amounts of money and people not lucky enough to be in that position will just simply diaper maturely. I want to thank my honourable friend for introducing this bill. I want to thank him for the courtesy he has always shown me which has been difficult at times as I such shouting at him in portcullis House about how everything was House about how everything was In my, moments understand that progress begins with small steps.
I'm frustrated those steps are too small. I'm delighted there will be one database for trials, but if there are no trials, the database does not get us very far. We will have a report on the drug act in 18 months time. In that period over 3500 people will be diagnosed with glioblastoma and many will be dead. Why is it going to take us 18 months to do that? Why can't we change it now? Why, in spite of the huge support we have had from the Secretary of State for Health for this bill could we not get something much more fierce in the bill? It is not a criticism, it is an observation.
I know progress begins slowly and I'm so grateful that he has taken up this bill and that he has the calm demeanour that I lack because I don't think the whips would have accepted and the thing I would have come up with as a Private Members' Bill. But we need a revolutionary attitude to these things. The other wants to see progress and harness progress or we will come back next year or the year after all the year after that asking why there is no progress.
And we all individually and commonly needs to dedicate ourselves to that progress and to keep asking the questions and being angry, and simply to refuse to accept that nothing can be done.
**** Possible New Speaker ****
I call Charlie Maynard. Thank you Madame Deputy Speaker. I would like to thank the honourable member from Edinburgh South West and member from Edinburgh South West and the honourable member from Mitcham and Morden and the honourable member for Birmingham Erdington because I for Birmingham Erdington because I really enjoyed working with you all really enjoyed working with you all all with our own stories. I should give my own personal story, my give my own personal story, my sister Georgie is there.
She was sister Georgie is there. She was diagnosed with a GBM two is ago. I would like to say she is alive and well but she is alive and she is doing well. And she has been brave. She has been determined and she has been inspirational to all of us. It is particularly painful as she is the mother of three and a wife and a daughter and a sister. So we have a lot to focus on. And it is on us
10:48
Charlie Maynard MP (Witney, Liberal Democrat)
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Charlie Maynard MP (Witney, Liberal Democrat)
collectively. I'm not going to collectively. I'm not going to rehash too much but I think, and I will try to resist having a cry fest will try to resist having a cry fest but it might be difficult. The actions are what we will be judged on. And what we, as a team, can do on. And what we, as a team, can do and I will throw it over to the other side because you are the government now and you have more government now and you have more power than we do on this site.
So I ask each of you to be looking at ask each of you to be looking at what we can do because the talk in this chamber is nice. And I will pick up on two points I would like to focus on. One is that trial register. We have lived it first hand to remind what trials are out there. But also just matching patients with trials. It is not rocket science. It is a basic thing. I would encourage the government to be looking at what is going on in the private sector is rather than starting from scratch and taking month-to-month to reinvent the wheel, find out what is going on in the private sector, what is already there in terms of registers of people seeking trials and what trials are out there and build on that.
Let's just move quickly because speed really does count here. The second thing is, a key trigger for me getting into politics was Brexit because I thought it was a disastrous idea and I still do. And I struggled to find any possible gain. But I will give one gainful Brexit, the EU has got its regulations around orphan drugs. We could have more generous regulations around them, we could pull research into the UK and that will allow us by giving a few extra years on those patterns to be digging into this critical research in this critical area.
So if that is one potential gain, I live in hope. But also a couple of things I want to highlight beyond that. One is, even if we get there we have to get these products obtained will stop reimbursement has to be successful on the NHS. That is far from certain. Ensuring there is a robust timely and accessible route to make the drugs available on the NHS and reaching patients, that really counts. So that must not fall off the radar screen.
And looking at the amount of clinical research active in the UK, we are really falling behind. If we want to get this research moving, we have to really think about what we are doing to get clinical researchers working hard on this space and other spaces because we are not doing enough. And that is all I will say, but I will return to that first point which is action. That is what we need. And
**** Possible New Speaker ****
good to have you here. Thank you Madame Deputy Speaker.
So I ask each of you to be looking at ask each of you to be looking at what we can do because the talk in this chamber is nice. And I will pick up on two points I would like to focus on. One is that trial register. We have lived it first hand to remind what trials are out there. But also just matching patients with trials. It is not rocket science. It is a basic thing. I would encourage the government to be looking at what is going on in the private sector is rather than starting from scratch and taking month-to-month to reinvent the wheel, find out what is going on in the private sector, what is already there in terms of registers of people seeking trials and what trials are out there and build on that.
Let's just move quickly because speed really does count here. The second thing is, a key trigger for me getting into politics was Brexit because I thought it was a disastrous idea and I still do. And I struggled to find any possible gain. But I will give one gainful Brexit, the EU has got its regulations around orphan drugs. We could have more generous regulations around them, we could pull research into the UK and that will allow us by giving a few extra years on those patterns to be digging into this critical research in this critical area.
So if that is one potential gain, I live in hope. But also a couple of things I want to highlight beyond that. One is, even if we get there we have to get these products obtained will stop reimbursement has to be successful on the NHS. That is far from certain. Ensuring there is a robust timely and accessible route to make the drugs available on the NHS and reaching patients, that really counts. So that must not fall off the radar screen.
And looking at the amount of clinical research active in the UK, we are really falling behind. If we want to get this research moving, we have to really think about what we are doing to get clinical researchers working hard on this space and other spaces because we are not doing enough. And that is all I will say, but I will return to that first point which is action. That is what we need. And
**** Possible New Speaker ****
good to have you here. Thank you Madame Deputy Speaker.
10:51
Sam Rushworth MP (Bishop Auckland, Labour)
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Sam Rushworth MP (Bishop Auckland, Labour)
Can I thank my honourable Friend the member for Edinburgh South West for bringing this bill, and join his tribute to the honourable Member for Mitcham and Morden for her campaigning and for the powerful speech that she gave a moment ago calling for a revolution in calling for a revolution in attitudes. I also want to thank the honourable member for Calder Valley for what was a very moving speech. As someone who has lost a brother much too young I was deeply moved by his words.
I have come here today to speak on behalf of my constituents, Katie Swinburn. She is a much loved schoolteacher. In fact she was a schoolteacher of one of my staff, and the mother of three. He was diagnosed with invasive breast cancer. As mentioned a moment ago, not be the breast -- lobular breast cancer second most common breast cancer in the world. But I think it shares many characteristics of rare cancers in the sense that it is very difficult to detect.
In Katie's case, in many cases it does not form a lump in the breast for example. It has a distinct and different genetics. So it is not detectable in genetic tests. And it is very easily missed in mammograms and ultrasounds. As a consequence, many of the women who get this form of cancer won't be diagnosed until long after the cancer has already spread. I'm also told because thankfully she is watching today, and I received a WhatsApp message a moment before speaking, that the key point that I should make to the Minister is that because it is not separated out and it does present differently to other forms of breast cancer, it is not separated out in clinical trials and there is very little trial data on it.
I met recently on Zoom with Katie and with others who have been campaigning for the moonshot. This is simply £20 million of funding. It is not a lot of money. £20 million that Manchester University could use to better understand the architecture, biological architecture of this type of cancer. It could then lead to the possibility to develop the right treatments because it currently has no specific treatment. It is a gentle request really that in the next stage of the bill that this be considered alongside the rare cancers that are put into this bill.
I wanted to finish by paying tribute to Katie but to all of the many brave individuals who I have met. I can't imagine what it is like to have parenting responsibilities, and to be young and diagnosed with advanced stage of cancer. And to know that frankly for many of the people who are campaigning, they may not be around to live to see the day that the better drugs and treatments are there. But they are bravely taking up this cause on behalf of those who come after them.
Katie was bravely doing 1 mile a day sponsored walks, and my predecessor in this place joined her on one of those files. Although we disagreed about many things politically, I think what we have already seen today is that this is a cause that unites. Because there is little really more precious in life for any of us than the fact there is nothing more precious, than time spent with people that we love. Money can't buy that.
Nothing can buy that. And the decisions that we make in this place, as I think the member for Mitcham and Morden made clear, can have real impact in the lives of others. Thank you. others. Thank you.
**** Possible New Speaker ****
Michael Clive Jones. I have to say sitting here waiting to speak I say sitting here waiting to speak I was very pleased that you did not call me after the honourable member for Calder Valley. I don't think I for Calder Valley. I don't think I would have been able to get through part of my speech having listened to his story, I thought you did really his story, I thought you did really his story, I thought you did really well.
I was diagnosed with breast cancer in 2008. It is relatively cancer in 2008. It is relatively unusual for a man. And the hardest thing I had to do was to tell my two daughters who were 13 and 14 at the time about my diagnosis. It was an experience that left me wondering if our family of four was about to become a family of three. I had to explain to all of them that I would have an operation to remove a tumour.
I may need another one. As things turned out my cancer had spread and I did need to have another operation. I would also have chemotherapy and radiotherapy. And that was going to take nine months out of our lives. Not just mine but the lives of my immediate family, the wider family, and our friends. I consider myself very lucky that the treatment pathway for me was relatively clear. But that is not
I have come here today to speak on behalf of my constituents, Katie Swinburn. She is a much loved schoolteacher. In fact she was a schoolteacher of one of my staff, and the mother of three. He was diagnosed with invasive breast cancer. As mentioned a moment ago, not be the breast -- lobular breast cancer second most common breast cancer in the world. But I think it shares many characteristics of rare cancers in the sense that it is very difficult to detect.
In Katie's case, in many cases it does not form a lump in the breast for example. It has a distinct and different genetics. So it is not detectable in genetic tests. And it is very easily missed in mammograms and ultrasounds. As a consequence, many of the women who get this form of cancer won't be diagnosed until long after the cancer has already spread. I'm also told because thankfully she is watching today, and I received a WhatsApp message a moment before speaking, that the key point that I should make to the Minister is that because it is not separated out and it does present differently to other forms of breast cancer, it is not separated out in clinical trials and there is very little trial data on it.
I met recently on Zoom with Katie and with others who have been campaigning for the moonshot. This is simply £20 million of funding. It is not a lot of money. £20 million that Manchester University could use to better understand the architecture, biological architecture of this type of cancer. It could then lead to the possibility to develop the right treatments because it currently has no specific treatment. It is a gentle request really that in the next stage of the bill that this be considered alongside the rare cancers that are put into this bill.
I wanted to finish by paying tribute to Katie but to all of the many brave individuals who I have met. I can't imagine what it is like to have parenting responsibilities, and to be young and diagnosed with advanced stage of cancer. And to know that frankly for many of the people who are campaigning, they may not be around to live to see the day that the better drugs and treatments are there. But they are bravely taking up this cause on behalf of those who come after them.
Katie was bravely doing 1 mile a day sponsored walks, and my predecessor in this place joined her on one of those files. Although we disagreed about many things politically, I think what we have already seen today is that this is a cause that unites. Because there is little really more precious in life for any of us than the fact there is nothing more precious, than time spent with people that we love. Money can't buy that.
Nothing can buy that. And the decisions that we make in this place, as I think the member for Mitcham and Morden made clear, can have real impact in the lives of others. Thank you. others. Thank you.
**** Possible New Speaker ****
Michael Clive Jones. I have to say sitting here waiting to speak I say sitting here waiting to speak I was very pleased that you did not call me after the honourable member for Calder Valley. I don't think I for Calder Valley. I don't think I would have been able to get through part of my speech having listened to his story, I thought you did really his story, I thought you did really his story, I thought you did really well.
I was diagnosed with breast cancer in 2008. It is relatively cancer in 2008. It is relatively unusual for a man. And the hardest thing I had to do was to tell my two daughters who were 13 and 14 at the time about my diagnosis. It was an experience that left me wondering if our family of four was about to become a family of three. I had to explain to all of them that I would have an operation to remove a tumour.
I may need another one. As things turned out my cancer had spread and I did need to have another operation. I would also have chemotherapy and radiotherapy. And that was going to take nine months out of our lives. Not just mine but the lives of my immediate family, the wider family, and our friends. I consider myself very lucky that the treatment pathway for me was relatively clear. But that is not
10:58
Clive Jones MP (Wokingham, Liberal Democrat)
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Clive Jones MP (Wokingham, Liberal Democrat)
the case for so many rare cancers. the case for so many rare cancers. The reach of cancer is an evil that is growing across our society. Nearly one in two of us is projected to get cancer in our lifetime. Meaning that we will all know someone close to us, family or someone close to us, family or friend, that will begin what can be friend, that will begin what can be a very traumatic journey. A fight which causes your life to be taken which causes your life to be taken completely out of your hands.
Which will leave families forced to here rarely used terms like malignant or other terms, as if they were common expressions crowding into medical jargon. It is with these words that I am proud to associate myself with the honourable member for Edinburgh South West. And I congratulate him on his campaign, demanding better for cancer patients. And especially for bringing forward the Rare Cancers Bill. Because it is a powerful and necessary step forward to end the experience that I described in the beginning part of described in the beginning part of my speech.
Rare cancers are often underresearched, and the regulatory environment simply fails to cope with them. They have smaller patient populations which makes research and investment less appealing. The evidence base is harder to achieve. And when clinical trials are taking place, patients often don't know very much about them. Cancer 52 survey of rare cancers patients says 65% cited not knowing about trials as a main barrier to accessing the trial in the first place. The bill, it said Parliament would seek to rectify the flaws in our system.
I want to change it to ensure patients can get better access and find rare trials. As highlighted in improving young people's access to cancer, clinical trials report, it is important for the clinical trial leads themselves define the necessary patience. Both patients and researchers need to be in these clinical trials. The system does not allow for that common sense joining up. I hope with these changes that people in my constituency and across England will begin to see a shift towards privatising rare cancers because it is long overdue.
Last week I met with a constituent to week I met with a constituent to discuss his wife's cancer. She had a type of cancer which has an incident rate of six cases per 1 million people annually. He explained to me that one of the potential treatment options for his wife is through a particular treatment. But with an estimated 30 new cases of this type of cancer every year, and mutations there are too few patients to allow for sufficient clinical trials.
And therefore NICE do not licence drugs for this particular cancer. What other Ministers views on efforts within the European Union's life science industry to develop clear guidance to make it easier for guidance to make it easier for If this is successful, this would tackle one of the major problems for rarer cancers like the one I mentioned. Individual nations may not have a sufficient pool to conduct a clinical trial, but multiple nations working together code.
Does the Minister see cross nation trials as a great potential nation trials as a great potential for development for oncology? If the EU could look across operations, with this be something that the UK could negotiate its way into? This is no time for a government to be is no time for a government to be isolationist. My constituents also highlighted that inhibitors are available in the United States. What efforts has the Minister made that of drugs are approved, that there is an opportunity to take the US evidence into account when considering whether to approve this considering whether to approve this in the UK.
Sarcomas are just one tumour to which has poor survival outcomes and are limited treatment options. Despite investment from charities like sarcoma UK to fund treatments, we do not know enough about the disease because so few people are affected. Other constituents have written in to share their experience of losing loved ones to brain tumours. All have expressed hope in this bill that it would create a world in which we can better encourage pharmaceutical companies to run trials on rarer cancers to create innovative new treatments.
That the pain that they went through will not be a fate that others must ensure in future. Before I conclude, it would be a missed opportunity if I did not ask the Minister about the national strategy which will be so important in ensuring a long-term plan is in place to deliver better services for patients with rare and loss common cancers. The NHS need to be prepared for innovations of the future by preparing for an increase in demand of companion diagnostics, current turnaround times are already causing delays.
What steps as a minister taking to make sure there is enough capacity for diagnostic tests. The national strategy needs to be thoroughly scrutinised before its final draft is published to ensure that the measures demanded by cancer tragedies and ideas from the life science sector are properly covered. Finally, the NHS performance must be measured regularly over the lifetime of a strategy to see if improvements are actually being made. Can the Minister explain what mechanisms are being considered for accountability in the national strategy, and to finish, can I thank the honourable member for Edinburgh South West, once again, for bringing this bill once again, for bringing this bill
**** Possible New Speaker ****
I thank my friend from Edinburgh South West and I know he has put in South West and I know he has put in a lot of work in collaboration with a lot of work in collaboration with so many others with charities, and I
Which will leave families forced to here rarely used terms like malignant or other terms, as if they were common expressions crowding into medical jargon. It is with these words that I am proud to associate myself with the honourable member for Edinburgh South West. And I congratulate him on his campaign, demanding better for cancer patients. And especially for bringing forward the Rare Cancers Bill. Because it is a powerful and necessary step forward to end the experience that I described in the beginning part of described in the beginning part of my speech.
Rare cancers are often underresearched, and the regulatory environment simply fails to cope with them. They have smaller patient populations which makes research and investment less appealing. The evidence base is harder to achieve. And when clinical trials are taking place, patients often don't know very much about them. Cancer 52 survey of rare cancers patients says 65% cited not knowing about trials as a main barrier to accessing the trial in the first place. The bill, it said Parliament would seek to rectify the flaws in our system.
I want to change it to ensure patients can get better access and find rare trials. As highlighted in improving young people's access to cancer, clinical trials report, it is important for the clinical trial leads themselves define the necessary patience. Both patients and researchers need to be in these clinical trials. The system does not allow for that common sense joining up. I hope with these changes that people in my constituency and across England will begin to see a shift towards privatising rare cancers because it is long overdue.
Last week I met with a constituent to week I met with a constituent to discuss his wife's cancer. She had a type of cancer which has an incident rate of six cases per 1 million people annually. He explained to me that one of the potential treatment options for his wife is through a particular treatment. But with an estimated 30 new cases of this type of cancer every year, and mutations there are too few patients to allow for sufficient clinical trials.
And therefore NICE do not licence drugs for this particular cancer. What other Ministers views on efforts within the European Union's life science industry to develop clear guidance to make it easier for guidance to make it easier for If this is successful, this would tackle one of the major problems for rarer cancers like the one I mentioned. Individual nations may not have a sufficient pool to conduct a clinical trial, but multiple nations working together code.
Does the Minister see cross nation trials as a great potential nation trials as a great potential for development for oncology? If the EU could look across operations, with this be something that the UK could negotiate its way into? This is no time for a government to be is no time for a government to be isolationist. My constituents also highlighted that inhibitors are available in the United States. What efforts has the Minister made that of drugs are approved, that there is an opportunity to take the US evidence into account when considering whether to approve this considering whether to approve this in the UK.
Sarcomas are just one tumour to which has poor survival outcomes and are limited treatment options. Despite investment from charities like sarcoma UK to fund treatments, we do not know enough about the disease because so few people are affected. Other constituents have written in to share their experience of losing loved ones to brain tumours. All have expressed hope in this bill that it would create a world in which we can better encourage pharmaceutical companies to run trials on rarer cancers to create innovative new treatments.
That the pain that they went through will not be a fate that others must ensure in future. Before I conclude, it would be a missed opportunity if I did not ask the Minister about the national strategy which will be so important in ensuring a long-term plan is in place to deliver better services for patients with rare and loss common cancers. The NHS need to be prepared for innovations of the future by preparing for an increase in demand of companion diagnostics, current turnaround times are already causing delays.
What steps as a minister taking to make sure there is enough capacity for diagnostic tests. The national strategy needs to be thoroughly scrutinised before its final draft is published to ensure that the measures demanded by cancer tragedies and ideas from the life science sector are properly covered. Finally, the NHS performance must be measured regularly over the lifetime of a strategy to see if improvements are actually being made. Can the Minister explain what mechanisms are being considered for accountability in the national strategy, and to finish, can I thank the honourable member for Edinburgh South West, once again, for bringing this bill once again, for bringing this bill
**** Possible New Speaker ****
I thank my friend from Edinburgh South West and I know he has put in South West and I know he has put in a lot of work in collaboration with a lot of work in collaboration with so many others with charities, and I
11:06
Peter Dowd MP (Bootle, Labour)
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Peter Dowd MP (Bootle, Labour)
so many others with charities, and I send my condolences to him to him and to Lee's family. To lose a child is unbearable and against the natural order of things. This is a natural order of things. This is a much-needed bill but before I do, I live in the area that was referred to, and can I just say to him, that it will be a remarkable legacy in this particular area which is absolutely fantastic. I show him around and he can see what legacy this has.
I also want to refer to comments made by the Chief Executive Officer. She talks movingly as to how during her career, she was frequently moved by the determination of patients and their families. In this respect, I support my honourable friends, by giving our unambiguous backing to the bill of hope. Of course, we must ensure that the hope is turned into reality, and that is the job of every member in this chamber, turning this into reality, and we champion needs, treatments and lives.
In this regard, this piece of legislation will be a starting point, a first base, enabling to facilitate research into rare access and clinical trials which has been referred to for so-called products. That is the part of the bill that I want to explore a little bit more with your indulgence if I may. It is devastating to have a diagnosis of cancer. We all know people who have been diagnosed with one form or another. The shock and trauma that comes with the honourable member of Wokingham, but then to find out subsequently that the spectrum of intervention with medicines is limited because of a particular cancer.
Surely it adds to the source of distress and worry. Questions inevitably speak the minds of those affected as to whether or not an appropriate intervention is available or even on the horizon. They are often used to create diseases not necessarily of red cancers, and people are wary because it costs time and effort and they will be commercially conductive given the number of people who will use them. In reality, given these potential life changing drugs are not reduced, it leaves a significant lacuna of treatment options for those with rare cancers.
In other words, there is absolutely no doubt but no resource to enable that to be filled, and that should be made available. Given this, I am pleased that because one of the bill will undertake a review in relation to It is an excellent and much needed step in the right direction. Linked in with the other requirements for research programs and initiatives, and I believe that sends an unambiguous message to those affected and those who will be affected.
It could be anyone in this chamber, as we have had today. The government has heard what they have said and have not just listen to that message but acting in a practical way to change it and put it into effect. I believe that will be more than welcome. Other countries have introduced similar legislation in this respect. The provision into clause 1 will help form an approach to be taken, and enable practices and protocols from other jurisdictions to be harvested as a result of clauses and subsection.
The genetic has rare diseases, possibly more, affecting one in 17 people of treatments that were only one in 20 approved. Given this, while they are not necessarily significant cohorts per se, nevertheless, collectively, millions of peoples are affected by a rare of peoples are affected by a rare disease including rare cancers. The disease is a disease, and those affected by it, whether rare or not, are entitled to equity of care and intervention. In this regard, such interventions cannot simply be left to market arrangements, and that is why it is important to facilitate more comprehensive approaches to the development of orphan medicines.
This must be set in the context of a 2002 survey of orphan messages that receive approvals, and of those, 36 of them were made available in England compared to 55 in Germany, 50 in Italy, 40 in France and 31 in Spain, and these are not specific in relation to cancer medicines, but it does help to contextualise the difference in numbers. A research programme between 2020 and 2025 that the Sheffield University funded by the Wellcome trust indicated, furthermore, only 1/3 of EU authorised orphan drugs are recommended, but the medical needs of rare disease patients are potentially underserved compared to both the USA and the EU.
Indeed, the project at the universities as part of a project, and clearly, there is a major international debate currently ongoing about how we improve patients access to orphan improve patients access to orphan drugs, raise questions about how to value these medicines and the ethics of resource allocation. We are being creative in regressing a relatively unique concept of authorisation as a way of understanding changes in the biopharmaceutical sector. He examines the way that things are appearing in the EU, the UK, and the USA.
And is seeking to see how it is informed by various technologies, institutions, and implications to industry, health policy, and health policy, and I do look forward to the progress that we will make. The proposals in this bill will help. It follows through systematically and consistently to change that scenario for the better. We asked decision- makers how they can be proactive in getting access to medical ins for those who need them, especially when the size of the range is fairly limited as in the case of the issues we are talking about today and rare cancers in particular and rare Once again can I thank my honourable friend for enabling the house to debate this issue.
And the opportunity to tease out many of the issues that are affecting our constituents. As I referred to earlier, the opportunity to raise the issue of crucial and life-saving investment treatments for diseases more generally. In conclusion, I want to be tribute to all those colleagues who brought their stories and experiences to us today. And who have spoken including my honourable friend the member for Calder Valley, Mitcham and Morden, and others and they do deserve our admiration and thanks.
More importantly, they need our support to get the job done. Such expositions, however painful for the honourable members concerned, they show the very real need for this house to act upon this matter which is literally a matter of life-and-death. Finally I look forward to the opportunity of seeing the progress of the bill through the house, as no doubt many others will.
**** Possible New Speaker ****
Thank you Madame Deputy Speaker. Dr Lauren Sullivan.
**** Possible New Speaker ****
Dr Lauren Sullivan. Thank you Madame Deputy Speaker. I am here today to support the Rare
I also want to refer to comments made by the Chief Executive Officer. She talks movingly as to how during her career, she was frequently moved by the determination of patients and their families. In this respect, I support my honourable friends, by giving our unambiguous backing to the bill of hope. Of course, we must ensure that the hope is turned into reality, and that is the job of every member in this chamber, turning this into reality, and we champion needs, treatments and lives.
In this regard, this piece of legislation will be a starting point, a first base, enabling to facilitate research into rare access and clinical trials which has been referred to for so-called products. That is the part of the bill that I want to explore a little bit more with your indulgence if I may. It is devastating to have a diagnosis of cancer. We all know people who have been diagnosed with one form or another. The shock and trauma that comes with the honourable member of Wokingham, but then to find out subsequently that the spectrum of intervention with medicines is limited because of a particular cancer.
Surely it adds to the source of distress and worry. Questions inevitably speak the minds of those affected as to whether or not an appropriate intervention is available or even on the horizon. They are often used to create diseases not necessarily of red cancers, and people are wary because it costs time and effort and they will be commercially conductive given the number of people who will use them. In reality, given these potential life changing drugs are not reduced, it leaves a significant lacuna of treatment options for those with rare cancers.
In other words, there is absolutely no doubt but no resource to enable that to be filled, and that should be made available. Given this, I am pleased that because one of the bill will undertake a review in relation to It is an excellent and much needed step in the right direction. Linked in with the other requirements for research programs and initiatives, and I believe that sends an unambiguous message to those affected and those who will be affected.
It could be anyone in this chamber, as we have had today. The government has heard what they have said and have not just listen to that message but acting in a practical way to change it and put it into effect. I believe that will be more than welcome. Other countries have introduced similar legislation in this respect. The provision into clause 1 will help form an approach to be taken, and enable practices and protocols from other jurisdictions to be harvested as a result of clauses and subsection.
The genetic has rare diseases, possibly more, affecting one in 17 people of treatments that were only one in 20 approved. Given this, while they are not necessarily significant cohorts per se, nevertheless, collectively, millions of peoples are affected by a rare of peoples are affected by a rare disease including rare cancers. The disease is a disease, and those affected by it, whether rare or not, are entitled to equity of care and intervention. In this regard, such interventions cannot simply be left to market arrangements, and that is why it is important to facilitate more comprehensive approaches to the development of orphan medicines.
This must be set in the context of a 2002 survey of orphan messages that receive approvals, and of those, 36 of them were made available in England compared to 55 in Germany, 50 in Italy, 40 in France and 31 in Spain, and these are not specific in relation to cancer medicines, but it does help to contextualise the difference in numbers. A research programme between 2020 and 2025 that the Sheffield University funded by the Wellcome trust indicated, furthermore, only 1/3 of EU authorised orphan drugs are recommended, but the medical needs of rare disease patients are potentially underserved compared to both the USA and the EU.
Indeed, the project at the universities as part of a project, and clearly, there is a major international debate currently ongoing about how we improve patients access to orphan improve patients access to orphan drugs, raise questions about how to value these medicines and the ethics of resource allocation. We are being creative in regressing a relatively unique concept of authorisation as a way of understanding changes in the biopharmaceutical sector. He examines the way that things are appearing in the EU, the UK, and the USA.
And is seeking to see how it is informed by various technologies, institutions, and implications to industry, health policy, and health policy, and I do look forward to the progress that we will make. The proposals in this bill will help. It follows through systematically and consistently to change that scenario for the better. We asked decision- makers how they can be proactive in getting access to medical ins for those who need them, especially when the size of the range is fairly limited as in the case of the issues we are talking about today and rare cancers in particular and rare Once again can I thank my honourable friend for enabling the house to debate this issue.
And the opportunity to tease out many of the issues that are affecting our constituents. As I referred to earlier, the opportunity to raise the issue of crucial and life-saving investment treatments for diseases more generally. In conclusion, I want to be tribute to all those colleagues who brought their stories and experiences to us today. And who have spoken including my honourable friend the member for Calder Valley, Mitcham and Morden, and others and they do deserve our admiration and thanks.
More importantly, they need our support to get the job done. Such expositions, however painful for the honourable members concerned, they show the very real need for this house to act upon this matter which is literally a matter of life-and-death. Finally I look forward to the opportunity of seeing the progress of the bill through the house, as no doubt many others will.
**** Possible New Speaker ****
Thank you Madame Deputy Speaker. Dr Lauren Sullivan.
**** Possible New Speaker ****
Dr Lauren Sullivan. Thank you Madame Deputy Speaker. I am here today to support the Rare
11:17
Dr Lauren Sullivan MP (Gravesham, Labour)
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Dr Lauren Sullivan MP (Gravesham, Labour)
Cancers Bill, a vital piece of legislation introduced by my honourable friend. I want to begin by paying tribute to his father-in- law nor those that have shared their stories here today. His story, like so many, is a reminder of how aggressive underresearched cancers can be leaving patients with little or no hope. It is assumed that rare cancers affects a fewer number of people that is not the case. Cancer Research UK so that rare and less common cancers have 55% of all cancer -related deaths.
80% of rare cancers patients I never even consulted about joining a clinical trial. This means that with each individual rare cancers which may affect relatively few people, together it makes up almost half of cancer cases. And yet the funding and research remains disproportionately low. I'd like to briefly mention Charlie. Who is one of my constituents in Gravesham, like so many, who is fighting bio duct cancer. Supposedly rare but devastating form of liver cancer. This is facing rising incidents, from 2001, 2.1 out of 100,000 people were diagnosed with this.
Today, 2018, it is 4.6. 79% of these patients are diagnosed at stage III or stage IV. Meaning the likelihood of survival is limited. I can't say it... This treatment is non-invasive which uses sonic bean therapy. Absolute incredible. Non-invasive. The problem is, we don't have one in the UK. It cost £10 million to have one of these machines. Let's get one here because for people facing this disease, as well as pancreatic cancer, this is a lifesaver.
As Charlie put it, "I was lucky enough to afford treatment abroad. I know many that aren't. They don't have an option. Why should their chances depend on their bank balance? " We must recognise that rare does not mean insignificant. And people across the UK are battling cancers that remain underfunded, underresearched, and under served by clinical trials. This is a pattern that is repeated again and again. A rare soft tissue cancer demands personalised treatment.
Each of these cancers devastate lives. We have discussed what the bill can do, appoint a National Speciality Lead for Rare Cancers. Review and improve the UK orphan drug regulations and improve data sharing. As my work as a research scientist in biochemistry, I came across and worked on neglected tropical diseases, infectious diseases. I came across drugs for the infected disease initiative. Launched 25 years ago and they came about to coordinate research outcomes, negotiate with big pharma looking at existing drugs and testing them, and they are now eliminated across the globe.
It can be done. We have got the blueprint here. So I would ask and urge the Minister to reach out to this initiative and look and see what we can learn and implement. For too long, rare and neglected cancers have meant a rare chance of survival. I think the strength of feeling everybody here, there is the will to do that. I look forward to seeing the bill go forward and seeing those are not left behind. And that we find a cure.
Thank you
**** Possible New Speaker ****
for allowing me to speak today. Micheal Martin REULs. Thank you Madame Deputy Speaker.
80% of rare cancers patients I never even consulted about joining a clinical trial. This means that with each individual rare cancers which may affect relatively few people, together it makes up almost half of cancer cases. And yet the funding and research remains disproportionately low. I'd like to briefly mention Charlie. Who is one of my constituents in Gravesham, like so many, who is fighting bio duct cancer. Supposedly rare but devastating form of liver cancer. This is facing rising incidents, from 2001, 2.1 out of 100,000 people were diagnosed with this.
Today, 2018, it is 4.6. 79% of these patients are diagnosed at stage III or stage IV. Meaning the likelihood of survival is limited. I can't say it... This treatment is non-invasive which uses sonic bean therapy. Absolute incredible. Non-invasive. The problem is, we don't have one in the UK. It cost £10 million to have one of these machines. Let's get one here because for people facing this disease, as well as pancreatic cancer, this is a lifesaver.
As Charlie put it, "I was lucky enough to afford treatment abroad. I know many that aren't. They don't have an option. Why should their chances depend on their bank balance? " We must recognise that rare does not mean insignificant. And people across the UK are battling cancers that remain underfunded, underresearched, and under served by clinical trials. This is a pattern that is repeated again and again. A rare soft tissue cancer demands personalised treatment.
Each of these cancers devastate lives. We have discussed what the bill can do, appoint a National Speciality Lead for Rare Cancers. Review and improve the UK orphan drug regulations and improve data sharing. As my work as a research scientist in biochemistry, I came across and worked on neglected tropical diseases, infectious diseases. I came across drugs for the infected disease initiative. Launched 25 years ago and they came about to coordinate research outcomes, negotiate with big pharma looking at existing drugs and testing them, and they are now eliminated across the globe.
It can be done. We have got the blueprint here. So I would ask and urge the Minister to reach out to this initiative and look and see what we can learn and implement. For too long, rare and neglected cancers have meant a rare chance of survival. I think the strength of feeling everybody here, there is the will to do that. I look forward to seeing the bill go forward and seeing those are not left behind. And that we find a cure.
Thank you
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for allowing me to speak today. Micheal Martin REULs. Thank you Madame Deputy Speaker.
11:22
Martin Rhodes MP (Glasgow North, Labour)
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Thank you Madame Deputy Speaker. We have already heard in this debate so much moving and powerful so much moving and powerful testimony. But despite the tragic impact that rare cancers have on people across the UK, they garner too little attention, they are underresearched, and there is a lack of investment in the treatment. No cancer survival rates rose by 10% between 2005 and 2020, but rare cancers still have one of the lowest survival rates. Leaving many people without hope.
To help combat this, I thank the honourable Member from Edinburgh South West for introducing this bill. I will argue in favour of this today using three examples. Firstly the story of the constituent suffering from a rare cancers. Secondly the importance of this bill for extremely rare cancers. And lastly its importance for future research. There are many rare forms of cancer that individuals suffer, often without specialised treatment or public awareness. But every rare cancer patient has a name in the story.
Take that of the constituent I recently met in Parliament at an event for world Cancer Day. Who suffers from a particular kind of leukaemia. By the five year survival rates from leukaemia it currently stands at 55%, but the figure for this rare and aggressive form of leukaemia is one of the lowest of all cancers. It stands at a 22% survival rate beyond five years after diagnosis. This means that sadly nearly 80% of those diagnosed will not survive to the end of this Parliament.
Surgery is not a viable treatable option for those diagnosed with leukaemia. Therefore patients with leukaemia often depend on the discovery of new innovative treatments to survive the disease. Though every cancer has a name and a story, there are some so rare that there is little representation of them even in debates like this. This brings me to my second example. What is known as CHE. It was only identified in 2006 and there were less than 60 cases reported in English language literature.
Because of its rarity it is hard to treat and demands little attention. Those affected by it have names, families, and stories. Hopefully mentioning it in this debate may in a small way help raise awareness of its existence. Furthermore this bill will assist this matter as it will appoint a named person responsible for overseeing the delivery of research into rare cancer treatments. This will facilitate some political accountability for rare Cancer research and encourage an ecosystem which hopefully will lead to future treatment or at least attention for some of the rarest attention for some of the rarest cancers like CHE.
Early this week I met the constituent who is a researcher at the University of Glasgow and was in Parliament for an exhibition. We discussed her research on a novel approach to teaching osteosarcoma the most common blood cancer. Despite this only 160 people are diagnosed with it e.g. In the UK. This is fewer than three people for every 1 million people in the population. Making it a rare cancer under this bill. Current treatment lack passivity in tackling the tumour and often have unwanted side effects.
My constituent research looks at potential use of small molecules is a more effective and non-invasive treatment for osteosarcoma. Therefore the support of information sharing in the research registry system through this bill will help researchers like my constituent. It will give them greater access to the patient population of those with rare cancers like osteosarcoma, to help the research and clinical trials. The patient survey in 2024 found 80% of those with a rare and less common cancer were not offered a clinical trial.
This is why this bill is important. It will help foster an environment where more research and clinical trials rare cancers such as osteosarcoma will happen. For patients like my constituent, suffering from this type of leukaemia, for those diagnosed with the least common cancers in full researchers trying to find new treatments, this bill represents a commitment to the fight against rare cancers. I therefore urge the House to support my
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honourable Friend in this bill today. I call Chris Macdonald.
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Thank you Madame Deputy Speaker. For those of us who have lost a For those of us who have lost a friend or a family member to cancer, friend or a family member to cancer, we no doubt heard them described as courageous. But I have to say this courageous. But I have to say this morning I think we have witnessed what I would describe as the most courageous exhibition I've ever had courageous exhibition I've ever had in my life from the member for Calder Valley.
I would like to thank him for the privilege of allowing us to listen to that glowing tributes to him. I also found from the member for Witney, and the member for Mitcham and Morden about the pressure of time, the need to do something urgently in terms of
Martin Rhodes MP (Glasgow North, Labour)
**** Possible New Speaker ****
Thank you Madame Deputy Speaker. We have already heard in this debate so much moving and powerful so much moving and powerful testimony. But despite the tragic impact that rare cancers have on people across the UK, they garner too little attention, they are underresearched, and there is a lack of investment in the treatment. No cancer survival rates rose by 10% between 2005 and 2020, but rare cancers still have one of the lowest survival rates. Leaving many people without hope.
To help combat this, I thank the honourable Member from Edinburgh South West for introducing this bill. I will argue in favour of this today using three examples. Firstly the story of the constituent suffering from a rare cancers. Secondly the importance of this bill for extremely rare cancers. And lastly its importance for future research. There are many rare forms of cancer that individuals suffer, often without specialised treatment or public awareness. But every rare cancer patient has a name in the story.
Take that of the constituent I recently met in Parliament at an event for world Cancer Day. Who suffers from a particular kind of leukaemia. By the five year survival rates from leukaemia it currently stands at 55%, but the figure for this rare and aggressive form of leukaemia is one of the lowest of all cancers. It stands at a 22% survival rate beyond five years after diagnosis. This means that sadly nearly 80% of those diagnosed will not survive to the end of this Parliament.
Surgery is not a viable treatable option for those diagnosed with leukaemia. Therefore patients with leukaemia often depend on the discovery of new innovative treatments to survive the disease. Though every cancer has a name and a story, there are some so rare that there is little representation of them even in debates like this. This brings me to my second example. What is known as CHE. It was only identified in 2006 and there were less than 60 cases reported in English language literature.
Because of its rarity it is hard to treat and demands little attention. Those affected by it have names, families, and stories. Hopefully mentioning it in this debate may in a small way help raise awareness of its existence. Furthermore this bill will assist this matter as it will appoint a named person responsible for overseeing the delivery of research into rare cancer treatments. This will facilitate some political accountability for rare Cancer research and encourage an ecosystem which hopefully will lead to future treatment or at least attention for some of the rarest attention for some of the rarest cancers like CHE.
Early this week I met the constituent who is a researcher at the University of Glasgow and was in Parliament for an exhibition. We discussed her research on a novel approach to teaching osteosarcoma the most common blood cancer. Despite this only 160 people are diagnosed with it e.g. In the UK. This is fewer than three people for every 1 million people in the population. Making it a rare cancer under this bill. Current treatment lack passivity in tackling the tumour and often have unwanted side effects.
My constituent research looks at potential use of small molecules is a more effective and non-invasive treatment for osteosarcoma. Therefore the support of information sharing in the research registry system through this bill will help researchers like my constituent. It will give them greater access to the patient population of those with rare cancers like osteosarcoma, to help the research and clinical trials. The patient survey in 2024 found 80% of those with a rare and less common cancer were not offered a clinical trial.
This is why this bill is important. It will help foster an environment where more research and clinical trials rare cancers such as osteosarcoma will happen. For patients like my constituent, suffering from this type of leukaemia, for those diagnosed with the least common cancers in full researchers trying to find new treatments, this bill represents a commitment to the fight against rare cancers. I therefore urge the House to support my
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honourable Friend in this bill today. I call Chris Macdonald.
**** Possible New Speaker ****
Thank you Madame Deputy Speaker. For those of us who have lost a For those of us who have lost a friend or a family member to cancer, friend or a family member to cancer, we no doubt heard them described as courageous. But I have to say this courageous. But I have to say this morning I think we have witnessed what I would describe as the most courageous exhibition I've ever had courageous exhibition I've ever had in my life from the member for Calder Valley.
I would like to thank him for the privilege of allowing us to listen to that glowing tributes to him. I also found from the member for Witney, and the member for Mitcham and Morden about the pressure of time, the need to do something urgently in terms of
11:28
Chris McDonald MP (Stockton North, Labour)
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Chris McDonald MP (Stockton North, Labour)
finding a cure or a treatment for rare cancers. We have had a number rare cancers. We have had a number of moving speeches this morning but I am going to allow members to relax I am going to allow members to relax and recharge emotional batteries a little bit. I'm going to address this issue of time and talk about this issue of time and talk about the practical considerations of how we can turn drug discovery into treatment. And to do this as treatment.
And to do this as speedily as possible. To do that I speedily as possible. To do that I will lift the lid on how drugs are in the supply chain and a vital role the NHS can play. First, on the drug supply chain the lessons we can learn from the COVID pandemic. We developed a vaccine very quickly in the UK at Oxford but we also saw quite quickly that the vaccine was worth nothing until it was in the arms of the population. To do that required a big effort including industries will stop this is important.
I have in my constituency a factory there who manufactured one of the COVID vaccines and will shortly turn Billingham into the largest biopharmaceutical manufacturing centre in the UK. They found they had a big problem at the time they were making the vaccines. This brings into play another town which is in the constituency of the member for Bishop Auckland. It's a town you might have heard of in the pandemic called Bishop Auckland. It became famous for a particular reason during the pandemic but maybe the reason I will talk about now has more to do with glass than glasses.
Barnard Castle is home to GlaxoSmithKline which actually did the bottling of the vaccine. There was that time a global shortage of bottles of vaccines. We have in the UK anyone glass Manufacturer soon there will be one in St Helens. With that overview get a sense that actually there is a big industrial supply chain issue that we need to address before we can get treatment to the people who need them the most. In fact there are a number of researchers in these areas who are working on it.
When you think about research, I'm sure you are thinking about people in white coats and laboratories in places like Oxford and Cambridge and Imperial. I urge you to think of the process of the bottle fillers in Barnard Castle and the furnace operators in St Helens were also working hard on research projects in order to deliver these treatments. The second aspect I would like us to consider is the role that the NHS can and must play, and what I want to see is a transformative leak different approach from the NHS in this area.
One month ago I met in public representatives from the pancreatic Cancer trust who I know are To me about the treatment for pancreatic cancer and the difficulties they have in sourcing sufficient quantities of this treatment. This is an issue with common drugs as well, people suffering with other conditions, and so the issue is we are relying so much on imports where we could be manufacturing these products in the UK ourselves. The NHS is the single biggest purchaser of drugs in the world.
It has the market power to world. It has the market power to demand the production is centred in the UK. This brings good economic benefits to the UK but it will shorten the cycle times for innovation because researchers and manufacturers are close to one another. It will ensure we have security of supply in the UK and it means we can be proud UK of manufacturing around the world. This fits with our industrial strategy that life honourable friend, the Secretary of State for Health, will stop day, the importance of life sciences our industrial strategy, creating British research and factories.
I would like to thank my For bringing this bill. He described his father-in-law as a dignified man, he gave an incredibly wide speech I'm sure his would do the days where people who suffer from rare cancers are not offered treatment such as taking a paracetamol, but we use the power of the NHS and UK supply chains to turn discoveries into drugs and trials discoveries into drugs and trials into lives. -- Lifesaving treatments.
And to do this as speedily as possible. To do that I speedily as possible. To do that I will lift the lid on how drugs are in the supply chain and a vital role the NHS can play. First, on the drug supply chain the lessons we can learn from the COVID pandemic. We developed a vaccine very quickly in the UK at Oxford but we also saw quite quickly that the vaccine was worth nothing until it was in the arms of the population. To do that required a big effort including industries will stop this is important.
I have in my constituency a factory there who manufactured one of the COVID vaccines and will shortly turn Billingham into the largest biopharmaceutical manufacturing centre in the UK. They found they had a big problem at the time they were making the vaccines. This brings into play another town which is in the constituency of the member for Bishop Auckland. It's a town you might have heard of in the pandemic called Bishop Auckland. It became famous for a particular reason during the pandemic but maybe the reason I will talk about now has more to do with glass than glasses.
Barnard Castle is home to GlaxoSmithKline which actually did the bottling of the vaccine. There was that time a global shortage of bottles of vaccines. We have in the UK anyone glass Manufacturer soon there will be one in St Helens. With that overview get a sense that actually there is a big industrial supply chain issue that we need to address before we can get treatment to the people who need them the most. In fact there are a number of researchers in these areas who are working on it.
When you think about research, I'm sure you are thinking about people in white coats and laboratories in places like Oxford and Cambridge and Imperial. I urge you to think of the process of the bottle fillers in Barnard Castle and the furnace operators in St Helens were also working hard on research projects in order to deliver these treatments. The second aspect I would like us to consider is the role that the NHS can and must play, and what I want to see is a transformative leak different approach from the NHS in this area.
One month ago I met in public representatives from the pancreatic Cancer trust who I know are To me about the treatment for pancreatic cancer and the difficulties they have in sourcing sufficient quantities of this treatment. This is an issue with common drugs as well, people suffering with other conditions, and so the issue is we are relying so much on imports where we could be manufacturing these products in the UK ourselves. The NHS is the single biggest purchaser of drugs in the world.
It has the market power to world. It has the market power to demand the production is centred in the UK. This brings good economic benefits to the UK but it will shorten the cycle times for innovation because researchers and manufacturers are close to one another. It will ensure we have security of supply in the UK and it means we can be proud UK of manufacturing around the world. This fits with our industrial strategy that life honourable friend, the Secretary of State for Health, will stop day, the importance of life sciences our industrial strategy, creating British research and factories.
I would like to thank my For bringing this bill. He described his father-in-law as a dignified man, he gave an incredibly wide speech I'm sure his would do the days where people who suffer from rare cancers are not offered treatment such as taking a paracetamol, but we use the power of the NHS and UK supply chains to turn discoveries into drugs and trials discoveries into drugs and trials into lives. -- Lifesaving treatments.
11:32
Lorraine Beavers MP (Blackpool North and Fleetwood, Labour)
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Lorraine Beavers MP (Blackpool North and Fleetwood, Labour)
I would like to thank my honourable friend for bringing this forward today. I remember the day my dad was diagnosed with terminal cancer. I remember my mum and dad picking me up off the floor. I was supposed to be supporting them but that did not happen that day. The doctor explained my dad's cancer was terminal. He was given chemotherapy initially to try to shrink the tumours and to give us more time. And later he was asked if he would take part in a trial uni -- using immunotherapy.
It was explained that the musician does not recognise cancer as being alien and a threat and immunotherapy teaches the immune system to recognise cancer and enables the body's own back. My dad was a fighter and was willing to try anything. My dad's body struggled with chemotherapy and after nearly losing him twice in a 12 month period, it was stopped. Once my dad started the treatment, the cancers, and there were many, never moved. We do not know if this treatment cured him and he was left with just scar tissue or the cancers were laying dormant.
I can tell you my dad did not die of cancer, it was something else that took him from others. My family believe we were given an extra three years of loving and being loved by my lovely dad. Because of immunotherapy. We will always be grateful for the Christmas days, birthday celebrations and sometimes the tears we were able to share with my wonderful, caring dad. People with rare cancers deserve their funding and research trials that this bill will initiate. They should have the chance of life that my dad was given.
That starts with ensuring patients can get better access to clinical trials. Many people miss out on these potential life extending trials because the information just is not out there as much as it needs to be. Recent research has found 82 percent of respondents with less common or rare cancers were not offered an opportunity to be part of a clinical trial. This has got to change. This bill will achieve this. I speak in support of the rare cancer bill because I believe everyone who is diagnosed with cancer should be given every chance of survival and without that message outlined in this bill, people with rare cancers will die sooner than other cancer patients, without being given the chances to fight this terrible disease.
I speak for them, I speak so others may have the chances awarded to my dad. Like to thank my dad's consultant for giving an 81- year-old man the precious gift of year-old man the precious gift of
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life for a few years longer. Thank you. I want to thank my honourable friend for bringing forward this rare cancers bill, it is about rare cancers bill, it is about choices. Having ranked highly in the Private Members' Bill ballot, chose
It was explained that the musician does not recognise cancer as being alien and a threat and immunotherapy teaches the immune system to recognise cancer and enables the body's own back. My dad was a fighter and was willing to try anything. My dad's body struggled with chemotherapy and after nearly losing him twice in a 12 month period, it was stopped. Once my dad started the treatment, the cancers, and there were many, never moved. We do not know if this treatment cured him and he was left with just scar tissue or the cancers were laying dormant.
I can tell you my dad did not die of cancer, it was something else that took him from others. My family believe we were given an extra three years of loving and being loved by my lovely dad. Because of immunotherapy. We will always be grateful for the Christmas days, birthday celebrations and sometimes the tears we were able to share with my wonderful, caring dad. People with rare cancers deserve their funding and research trials that this bill will initiate. They should have the chance of life that my dad was given.
That starts with ensuring patients can get better access to clinical trials. Many people miss out on these potential life extending trials because the information just is not out there as much as it needs to be. Recent research has found 82 percent of respondents with less common or rare cancers were not offered an opportunity to be part of a clinical trial. This has got to change. This bill will achieve this. I speak in support of the rare cancer bill because I believe everyone who is diagnosed with cancer should be given every chance of survival and without that message outlined in this bill, people with rare cancers will die sooner than other cancer patients, without being given the chances to fight this terrible disease.
I speak for them, I speak so others may have the chances awarded to my dad. Like to thank my dad's consultant for giving an 81- year-old man the precious gift of year-old man the precious gift of
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life for a few years longer. Thank you. I want to thank my honourable friend for bringing forward this rare cancers bill, it is about rare cancers bill, it is about choices. Having ranked highly in the Private Members' Bill ballot, chose
11:36
Euan Stainbank MP (Falkirk, Labour)
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Euan Stainbank MP (Falkirk, Labour)
Private Members' Bill ballot, chose to bring forward a bill that would put patients suffering from a rare cancer and their families higher up on the list of priorities. As was movingly put by my honourable friend for Calder Valley, in some instances we will get precious hours, days, weeks and years extra to spend with our loved ones. Every member of this House and every constituent I have spoken to about this has a story of a loved one who suffered through the heartbreaking -- cruelty of a cancer diagnosis.
I lost two of my grandparents in their early 60s. He still had time to exchange robust views on football, I'm sure if he had more time we would exchange views on politics as well. He was lucky to meet all four of his grandchildren thanks to immense care he received from his doctors. My granny passed away in 2012 after a 12 month battle with Braintree. -- Brain tumour. I remember holding her hand in the hospice that she volunteered at for a number of years and then received care from in her final days.
The value that hospice staff has to those who have cancer and their families. They allow us to endure. They are the people we should be arming the best possible tools to. In this chamber we will have to comprehend someday a diagnosis of cancer. We need active innovation to put clinical research and trials for rare cancers on a par and trials for rare cancers on a par with other cancers. I will go through the bill in its clauses, close one is statutory requirement for a review of medicines being an essential step to compensate the current availability of medicines as well as best scallop towards new treatments and research.
The comparative approach the bill puts forward for the review acknowledges a proud history of research, other countries have been able to make substantial strains in this area we have not in recent years. The UK has dropped from second for availability of medicine to 10 in England. That does not like progression, but potentially stagnation in advancing research to benefit those suffering from rare cancer. It is increasingly challenging to develop medicine for red diseases in this country, citing the low cost of NHS reimbursement for rare medicines.
Ensuring patients can be easily contacted through such research and there is appropriate oversight. This is a progressive move, the research will write into law that the Health Secretary must take a proactive approach to maintain and promote rare cancer research. It is the governments job description to make sure the ease of contact is properly facilitated and there is appropriate oversight. They say strategic oversight. They say strategic coordination is key. It will put a champion into law to cut through any silos that exist.
Clause 3 of the bill is a critical part of the framework as it aids -- aims to build a robust evidential basis for chemical trials. The NHS sharing information from the National disease registry surface, the registry so patients can be identified and contacted. Several organisations saying there are not enough people available for clinical trials for rare cancers. There is clearly a substantial barrier at the patient age -- end. 82 percent of those with a rare cancer had not been offered a clinical trial.
With rapid advances in cancer treatment, there is massive opportunity to take steps forward, increasing's availability -- survivability after diagnosis. Connecting those with cancer to clinical research involves look, connecting with the patient and then being aware of the clinical trial. This will simple fire and improve the efficiency and efficacy of the system, increasing the chances of successful trials. I give chances of successful trials. I give this bill. Or. -- My full support.
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May I thank my honourable friend for raising this important issue. I for raising this important issue. I was moved by his words today about his father-in-law and the story he his father-in-law and the story he told about Keira. I want to join him in welcoming Keira's family. I want in welcoming Keira's family. I want to pay tribute to the Member for her campaigning on this issue. I know her sister would be very proud of her sister would be very proud of her.
I want to also pay tribute to her. I want to also pay tribute to everyone who has spoken both to their bravery and the immense bravery of their constituents and
I lost two of my grandparents in their early 60s. He still had time to exchange robust views on football, I'm sure if he had more time we would exchange views on politics as well. He was lucky to meet all four of his grandchildren thanks to immense care he received from his doctors. My granny passed away in 2012 after a 12 month battle with Braintree. -- Brain tumour. I remember holding her hand in the hospice that she volunteered at for a number of years and then received care from in her final days.
The value that hospice staff has to those who have cancer and their families. They allow us to endure. They are the people we should be arming the best possible tools to. In this chamber we will have to comprehend someday a diagnosis of cancer. We need active innovation to put clinical research and trials for rare cancers on a par and trials for rare cancers on a par with other cancers. I will go through the bill in its clauses, close one is statutory requirement for a review of medicines being an essential step to compensate the current availability of medicines as well as best scallop towards new treatments and research.
The comparative approach the bill puts forward for the review acknowledges a proud history of research, other countries have been able to make substantial strains in this area we have not in recent years. The UK has dropped from second for availability of medicine to 10 in England. That does not like progression, but potentially stagnation in advancing research to benefit those suffering from rare cancer. It is increasingly challenging to develop medicine for red diseases in this country, citing the low cost of NHS reimbursement for rare medicines.
Ensuring patients can be easily contacted through such research and there is appropriate oversight. This is a progressive move, the research will write into law that the Health Secretary must take a proactive approach to maintain and promote rare cancer research. It is the governments job description to make sure the ease of contact is properly facilitated and there is appropriate oversight. They say strategic oversight. They say strategic coordination is key. It will put a champion into law to cut through any silos that exist.
Clause 3 of the bill is a critical part of the framework as it aids -- aims to build a robust evidential basis for chemical trials. The NHS sharing information from the National disease registry surface, the registry so patients can be identified and contacted. Several organisations saying there are not enough people available for clinical trials for rare cancers. There is clearly a substantial barrier at the patient age -- end. 82 percent of those with a rare cancer had not been offered a clinical trial.
With rapid advances in cancer treatment, there is massive opportunity to take steps forward, increasing's availability -- survivability after diagnosis. Connecting those with cancer to clinical research involves look, connecting with the patient and then being aware of the clinical trial. This will simple fire and improve the efficiency and efficacy of the system, increasing the chances of successful trials. I give chances of successful trials. I give this bill. Or. -- My full support.
**** Possible New Speaker ****
May I thank my honourable friend for raising this important issue. I for raising this important issue. I was moved by his words today about his father-in-law and the story he his father-in-law and the story he told about Keira. I want to join him in welcoming Keira's family. I want in welcoming Keira's family. I want to pay tribute to the Member for her campaigning on this issue. I know her sister would be very proud of her sister would be very proud of her.
I want to also pay tribute to her. I want to also pay tribute to everyone who has spoken both to their bravery and the immense bravery of their constituents and
11:42
David Pinto-Duschinsky MP (Hendon, Labour)
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David Pinto-Duschinsky MP (Hendon, Labour)
family members. I want to recognise the Member for Kingswinford and South Staffordshire, the story of South Staffordshire, the story of Dan. The Member for Blackpool North Dan. The Member for Blackpool North and Fleetwood for her speech about and Fleetwood for her speech about her father. The speech about his grandparents. And particularly I want to mention the Member for want to mention the Member for Calder Valley and I want to say to Calder Valley and I want to say to him, I'm so sorry I did not get chance to meet Alex, he sounds like a phenomenal human being.
I'm so sorry for your loss but I know he would be proud of you. My heart goes to you all, thank you for sharing the stories, thank you for your bravery. As so many of the stories show, the term, rare cancers, is misleading. The cancers we class as rare in total account for almost half of all cancer diagnoses each year. Tragically, they account for over half, 55 percent, of all cancer deaths. Given that one in two others develop some form of cancer in our lifetimes on average, the chances of experiencing one of these so-called rare or less common cancers ourselves or seeing it diagnosed in a loved one, are tragically higher than the name suggests.
Far higher. 182,000 people will be diagnosed in the coming year with one type of this type of cancer. Equivalent to a city the size of Swindon. 92,000 people will lose their lives as a result. A city the size of Chester. Behind each one of these tragic statistics lies a story of families bereaved, mothers, fathers, sisters, brothers, children lost. Lives torn apart. This brought home to me, when I visited the cancer care in my own constituency, to hear the stories of many people battling to live with cancer.
Their bravery is inspiring. They need our help. May I also commend the work the government is doing to improve cancer outcomes for all. They just launched a last month Call for Evidence to inform the development of a National plan. I hope we can pass this bill to help support its efforts. The illness is classified as rare or less common are among some of the crew list. This bill seeks to address some of the fundamental reasons as to why diagnosis with comparatively rarer form of cancer leaves patients with a disproportionately lower chance of making a full recovery.
There cancers are harder to diagnose. Some of the more common cancers have screening programs. Meaning many people are diagnosed before they have symptoms. Sadly, much less common when it comes to the case of rare cancers. Doctors see the symptoms of common cancers more frequently, so are more likely to spot them when they see them. We also know that currently, 82 percent of patients with a rare or less common form of cancer are not offered a clinical trial. This bill will seek to reduce the knowledge gap with rare cancers, with a body to advise on research, design and collaboration unread cancer research and a rare cancer registry to share information to improve the recruitment of participants for rare cancer clinical trials.
However, while we need to incentivise research, this is not the only barrier we face to improving rare cancer outcomes. The lower occurrence of many rare cancers mean that well drugs to combat them often do exist, they are not developed by the pharmaceutical industry for economic reasons, even though there is a pressing need for them. These drugs have the potential to not only save thousands of lives, but provide hundreds of thousands of families with the most valuable thing, the thing the memo for Calder Valley referred to, more time spent with their loved ones.
Under normal market conditions, pharmaceutical companies may be unwilling to invest in research and is of new treatments for diseases that affect fewer May May I May I pay May I pay tribute May I pay tribute for May I pay tribute for improving May I pay tribute for improving the power of collaboration between Parliament, the charity sector and patients. Drawing on mega -- medical expertise and experience, this is brought about by their white expose across the House. Pancreatic cancer UK says that there is potential to transform survival for rare cancers, with research.
The Brain Tumour Charity is also raised it. I know from my own experience, talking to constituents and visiting hospitals. Cancer is one of the defining health issues of our time, causing deaths every single day and we know there is no silver bullet we must fight cancer on all fronts from research to prevention, to diagnosis, treatment. The government is of course fully committed to doing that. We know that thanks to huge oncological steps forward in recent years outlook for cancer patients have improved dramatically full stop we have reached a milestone 50% of people diagnosed with cancer in England and now survive the disease for 10 years or more.
Yet this number. For many of the rarer number. For many of the rarer cancers we talked about today we must recognise as this bill does whether shortfalls are in our shared knowledge and our resources we put into the rarer forms of this disease. We have a duty to put this right. We must ensure that those suffering from rare and less common forms of cancer and those yet to be diagnosed have as much cause for hope as possible. I beg to support this bill.
I'm so sorry for your loss but I know he would be proud of you. My heart goes to you all, thank you for sharing the stories, thank you for your bravery. As so many of the stories show, the term, rare cancers, is misleading. The cancers we class as rare in total account for almost half of all cancer diagnoses each year. Tragically, they account for over half, 55 percent, of all cancer deaths. Given that one in two others develop some form of cancer in our lifetimes on average, the chances of experiencing one of these so-called rare or less common cancers ourselves or seeing it diagnosed in a loved one, are tragically higher than the name suggests.
Far higher. 182,000 people will be diagnosed in the coming year with one type of this type of cancer. Equivalent to a city the size of Swindon. 92,000 people will lose their lives as a result. A city the size of Chester. Behind each one of these tragic statistics lies a story of families bereaved, mothers, fathers, sisters, brothers, children lost. Lives torn apart. This brought home to me, when I visited the cancer care in my own constituency, to hear the stories of many people battling to live with cancer.
Their bravery is inspiring. They need our help. May I also commend the work the government is doing to improve cancer outcomes for all. They just launched a last month Call for Evidence to inform the development of a National plan. I hope we can pass this bill to help support its efforts. The illness is classified as rare or less common are among some of the crew list. This bill seeks to address some of the fundamental reasons as to why diagnosis with comparatively rarer form of cancer leaves patients with a disproportionately lower chance of making a full recovery.
There cancers are harder to diagnose. Some of the more common cancers have screening programs. Meaning many people are diagnosed before they have symptoms. Sadly, much less common when it comes to the case of rare cancers. Doctors see the symptoms of common cancers more frequently, so are more likely to spot them when they see them. We also know that currently, 82 percent of patients with a rare or less common form of cancer are not offered a clinical trial. This bill will seek to reduce the knowledge gap with rare cancers, with a body to advise on research, design and collaboration unread cancer research and a rare cancer registry to share information to improve the recruitment of participants for rare cancer clinical trials.
However, while we need to incentivise research, this is not the only barrier we face to improving rare cancer outcomes. The lower occurrence of many rare cancers mean that well drugs to combat them often do exist, they are not developed by the pharmaceutical industry for economic reasons, even though there is a pressing need for them. These drugs have the potential to not only save thousands of lives, but provide hundreds of thousands of families with the most valuable thing, the thing the memo for Calder Valley referred to, more time spent with their loved ones.
Under normal market conditions, pharmaceutical companies may be unwilling to invest in research and is of new treatments for diseases that affect fewer May May I May I pay May I pay tribute May I pay tribute for May I pay tribute for improving May I pay tribute for improving the power of collaboration between Parliament, the charity sector and patients. Drawing on mega -- medical expertise and experience, this is brought about by their white expose across the House. Pancreatic cancer UK says that there is potential to transform survival for rare cancers, with research.
The Brain Tumour Charity is also raised it. I know from my own experience, talking to constituents and visiting hospitals. Cancer is one of the defining health issues of our time, causing deaths every single day and we know there is no silver bullet we must fight cancer on all fronts from research to prevention, to diagnosis, treatment. The government is of course fully committed to doing that. We know that thanks to huge oncological steps forward in recent years outlook for cancer patients have improved dramatically full stop we have reached a milestone 50% of people diagnosed with cancer in England and now survive the disease for 10 years or more.
Yet this number. For many of the rarer number. For many of the rarer cancers we talked about today we must recognise as this bill does whether shortfalls are in our shared knowledge and our resources we put into the rarer forms of this disease. We have a duty to put this right. We must ensure that those suffering from rare and less common forms of cancer and those yet to be diagnosed have as much cause for hope as possible. I beg to support this bill.
11:49
Jenny Riddell-Carpenter MP (Suffolk Coastal, Labour)
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Jenny Riddell-Carpenter MP (Suffolk Coastal, Labour)
May I start by thanking my honourable friend the member Edinburgh South West bring forward this really important bill. I thank many other members for both sides for contributing so movingly today for also like to thank my constituency reached out to me to share their views and I will try? On traditions brief because I know others will want to speak. I liked in particular thank Maria and her daughter Lauren who told me about Maria's journey and her fight against cancer.
And how that diagnosis turned her life upside down she was diagnosed during COVID lockdowns. As you can imagine navigating that was hard enough, but navigating it when someone you love most in the world is suffering with cancer is it nearly impossible. Maria is still living with my sarcoma and having chemotherapy -- once a month, and as she told me living with cancer is top enough but when it's a rack can set you live with the fear that the disease will act quicker than the research makes progress.
That's why this bill is so important. We need to close the gap in the treatment of rare cancers to make sure more people are diagnosed with right cancers and that they have the same chance of survival as other cancers. Another constituent of mine knows the cost of this all too well. He has asked me not to share his or his wife's name instead to tell her story. She passed away last year after also being diagnosed with a rare form of cancer.
Despite the best efforts of the oncology unit, the rarity of the cancer meant it took too long for them to identify the condition, and the year of chemotherapy treatment followed but it was sadly to no avail. Though I have two examples of this wreck cancer in my constituency it is incredibly rare. One of the challenges with this cancer is the genetic variability and it has many different subtypes. Personalised medicine is particularly important for rare cancers with different subtypes, but due to the low number of patients with this particular type it is extremely difficult if not nearly impossible to run robust clinical trials.
But research is possible and great strides have been made in the US at the moment which show better treatment and better outcomes are possible. It is vital that we incentivise research and investment into the treatment of these right cancers and begin to close this gap. Thank you, and thank you again to the honourable member Edinburgh South West bring forward this important debate. this important debate.
And how that diagnosis turned her life upside down she was diagnosed during COVID lockdowns. As you can imagine navigating that was hard enough, but navigating it when someone you love most in the world is suffering with cancer is it nearly impossible. Maria is still living with my sarcoma and having chemotherapy -- once a month, and as she told me living with cancer is top enough but when it's a rack can set you live with the fear that the disease will act quicker than the research makes progress.
That's why this bill is so important. We need to close the gap in the treatment of rare cancers to make sure more people are diagnosed with right cancers and that they have the same chance of survival as other cancers. Another constituent of mine knows the cost of this all too well. He has asked me not to share his or his wife's name instead to tell her story. She passed away last year after also being diagnosed with a rare form of cancer.
Despite the best efforts of the oncology unit, the rarity of the cancer meant it took too long for them to identify the condition, and the year of chemotherapy treatment followed but it was sadly to no avail. Though I have two examples of this wreck cancer in my constituency it is incredibly rare. One of the challenges with this cancer is the genetic variability and it has many different subtypes. Personalised medicine is particularly important for rare cancers with different subtypes, but due to the low number of patients with this particular type it is extremely difficult if not nearly impossible to run robust clinical trials.
But research is possible and great strides have been made in the US at the moment which show better treatment and better outcomes are possible. It is vital that we incentivise research and investment into the treatment of these right cancers and begin to close this gap. Thank you, and thank you again to the honourable member Edinburgh South West bring forward this important debate. this important debate.
11:51
Shaun Davies MP (Telford, Labour)
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Shaun Davies MP (Telford, Labour)
I would like to thank my honourable friend for bringing forward this bill. He has channelled his personal experience and that of his personal experience and that of his family to produce a vital piece of legislation, I hope he will succeed in driving change on this issue, he certainly has my support and all members of the House support. It's on days like this that I often call Members of Parliament from right across the House, honourable friends rather than honourable members because this is a cause that certainly does unite us.
I know from listening to and reading the emails I've had from constituents that they are fully behind this bill as well. I would like to join my honourable friend to have pay tribute to many of those people today who have told the stories of their loved ones in their own families and their own communities. They are far braver than I what I will say is that next Thursday I will be a bearer at a funeral for a special woman in my life who I am not quite as brave to be able to tell her story today, but maybe one day I will.
I've heard about the devastating impacts from a number of constituents you have contacted me to share their stories, I've heard from one constituent about the mother of his three teenage children. In her 40s who has terminal pancreatic cancer after a late diagnosis. Among those stories a familiar theme arose, conditions like this cancer are being diagnosed too late with no treatment available given my constituents loved ones just months to live. I focus on this particular cancer because it is an example of the scandal that is rare cancer treatment.
It is classed as a rare trans- -- cancer by this bill because it affects less than one person in every 2000, every year one in every 6,000 people is diagnosed with pancreatic cancer, and half of those will die sadly within three months. There are roughly 107,000 people in Telford, my constituency. Which means that 18 of my constituents each and every year will be diagnosed with this awful cancer, and nine of them will die within three months of being diagnosed. It's absolutely shocking.
I/O it to -- I/O those people in my constituency to be in this chamber today speaking up and demanding drastic plate that change to take place will stop it's easy to see how this problem can arise although it doesn't make it any less galling in a healthcare system under strain which is particularly failing cancer patients. UK cancer survival rates were 25 years behind some other European countries. You can see how decision-makers might be faced with Sophie's choice.
The in enviable task of prioritising counter treatments and you prioritise what will save the most people that's no consolation to the 47% of cancer patients in the UK his cancers are rare and less common. Even more damning statistic is that sufferers from rare cancers make the majority of cancer deaths as we have heard today, 55%. It is clear that this is not sustainable or fair or just. We can't let one single cancer patient slip through the cracks of our healthcare service, let alone 90,000 people each and every year.
All too often, and we have had today, people in my constituency across the country will rally around to raise money for their loved ones and children to be sent to receive treatment, on one level that is amazing to see. Another it is so depressing that that has to be done in order to access this life-saving treatment. To sum up, this bill is about acknowledging that we can do better, the treatment of rare cancer patients is a scandal, not in the sense that anyone individual is liable or culpable, but because the system as a whole has let tens of thousands of cancer patients down.
To the healthcare and research sectors we say you must do better and we want you to do better and we will work alongside you to do better, this bill is one welcome first step in doing that. I urge the government to be bold. We can do a lot as this cohort of members of Parliament on this agenda and this cohort of government ministers full stop we talk a lot in this place about hope and change, goodness me, what other better example is there than this bill to provide hope and change to millions people across our change to millions people across our
**** Possible New Speaker ****
country. Let's make cancer history. There is hardly a family in the
**** Possible New Speaker ****
There is hardly a family in the UK that hasn't been touched by cancer in some way and this chamber this morning has shown how much we this morning has shown how much we do reflect the population. The feeling of fear, anxiety and heartbreak that comes with it. For heartbreak that comes with it. For those diagnosed with right cancers the challenges are even greater. The the challenges are even greater. The late diagnosed -- delayed diagnosis, the shocking lack of research that means these patients and their means these patients and their families often left in the dark and I'm glad we are united that this has to change.
Which is why I'm so proud to support the right cancers bill brought forward by my honourable
I know from listening to and reading the emails I've had from constituents that they are fully behind this bill as well. I would like to join my honourable friend to have pay tribute to many of those people today who have told the stories of their loved ones in their own families and their own communities. They are far braver than I what I will say is that next Thursday I will be a bearer at a funeral for a special woman in my life who I am not quite as brave to be able to tell her story today, but maybe one day I will.
I've heard about the devastating impacts from a number of constituents you have contacted me to share their stories, I've heard from one constituent about the mother of his three teenage children. In her 40s who has terminal pancreatic cancer after a late diagnosis. Among those stories a familiar theme arose, conditions like this cancer are being diagnosed too late with no treatment available given my constituents loved ones just months to live. I focus on this particular cancer because it is an example of the scandal that is rare cancer treatment.
It is classed as a rare trans- -- cancer by this bill because it affects less than one person in every 2000, every year one in every 6,000 people is diagnosed with pancreatic cancer, and half of those will die sadly within three months. There are roughly 107,000 people in Telford, my constituency. Which means that 18 of my constituents each and every year will be diagnosed with this awful cancer, and nine of them will die within three months of being diagnosed. It's absolutely shocking.
I/O it to -- I/O those people in my constituency to be in this chamber today speaking up and demanding drastic plate that change to take place will stop it's easy to see how this problem can arise although it doesn't make it any less galling in a healthcare system under strain which is particularly failing cancer patients. UK cancer survival rates were 25 years behind some other European countries. You can see how decision-makers might be faced with Sophie's choice.
The in enviable task of prioritising counter treatments and you prioritise what will save the most people that's no consolation to the 47% of cancer patients in the UK his cancers are rare and less common. Even more damning statistic is that sufferers from rare cancers make the majority of cancer deaths as we have heard today, 55%. It is clear that this is not sustainable or fair or just. We can't let one single cancer patient slip through the cracks of our healthcare service, let alone 90,000 people each and every year.
All too often, and we have had today, people in my constituency across the country will rally around to raise money for their loved ones and children to be sent to receive treatment, on one level that is amazing to see. Another it is so depressing that that has to be done in order to access this life-saving treatment. To sum up, this bill is about acknowledging that we can do better, the treatment of rare cancer patients is a scandal, not in the sense that anyone individual is liable or culpable, but because the system as a whole has let tens of thousands of cancer patients down.
To the healthcare and research sectors we say you must do better and we want you to do better and we will work alongside you to do better, this bill is one welcome first step in doing that. I urge the government to be bold. We can do a lot as this cohort of members of Parliament on this agenda and this cohort of government ministers full stop we talk a lot in this place about hope and change, goodness me, what other better example is there than this bill to provide hope and change to millions people across our change to millions people across our
**** Possible New Speaker ****
country. Let's make cancer history. There is hardly a family in the
**** Possible New Speaker ****
There is hardly a family in the UK that hasn't been touched by cancer in some way and this chamber this morning has shown how much we this morning has shown how much we do reflect the population. The feeling of fear, anxiety and heartbreak that comes with it. For heartbreak that comes with it. For those diagnosed with right cancers the challenges are even greater. The the challenges are even greater. The late diagnosed -- delayed diagnosis, the shocking lack of research that means these patients and their means these patients and their families often left in the dark and I'm glad we are united that this has to change.
Which is why I'm so proud to support the right cancers bill brought forward by my honourable
11:57
Katrina Murray MP (Cumbernauld and Kirkintilloch, Labour)
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Katrina Murray MP (Cumbernauld and Kirkintilloch, Labour)
friend the Member for Edinburgh South West, I actually think I possibly worked with your father- possibly worked with your father- in-law many many years ago. We've in-law many many years ago. We've now got the chance to turn the tide and give people with right cancers focus. We talked a lot about the focus. We talked a lot about the statistics this morning, they are statistics this morning, they are there. We still don't get the access to the same investment and research to the same investment and research has common cancers.
The results, the survival rates were some of the least survival will cancers like pancreatic cancer, brain can, stomach cancer are stuck at just 16%. Which is not good enough. Seven weeks ago I lost my dad. More times has passed since his death than the time we had between his diagnosis
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raw. I thank my honourable friend for
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I thank my honourable friend for giving way and want to pay tribute to her dad. He would be extremely proud of her and the speech she is making today and contribution to this debate.
**** Possible New Speaker ****
Thank you very much for that
**** Possible New Speaker ****
Thank you very much for that intervention. The brain tumour Charity and brain tumour research highlighted that time and time again, just one% of national cancer research funding goes towards brain tumours despite them being the biggest cancer killer of children and adults under 40, and that is totally unacceptable. People who are dealing with these devastating diagnoses need more than words, they need investment in clinical trials and pathways to diagnosis of this bill is about fairness. It is about making sure that tackling the lack of funding, the difficulty getting patients into research and the absence of clear government leadership in this area.
People miss out beyond life changing trials because they Sibley don't know that they exist, we talked about the Member for Mitcham and Morden talked about the system in this country but we also have one of the most silo systems the people in one part of the system often don't know what is going on in other parts, we need that to stop. We also talked a lot about the importance of the approaches in places like the iter states with targeted policies, have led to new treatments for right cancers.
But also we need to recognise the other aspect of what's going on in the United States when executive orders from the White House butting higher education and their clinical trials currently into a tailspin. I want to pay tribute to the people that have helped me a lot over the last few weeks, in particular paying tribute to my honourable friend from Mitcham and Morden. She talks about being angry, but I just remember that anger is a natural part of grief and a natural stage of grief.
But it is also a massive driver for change and for getting things done. I am not at the angry stage just yet, I will be at some stage, and when I get there I will certainly be joining you. It is something that we get. Some but -- somebody said to me many years ago that the greatest gift somebody, that one of us can give is the gift No matter what our political differences on any other part of this, we have a chance today to give others the gift of time.
To make sure no other families like ours go through what we have. Please pass
**** Possible New Speaker ****
this bill. Thank you. I want to begin by thanking the honourable member for Edinburgh and honourable member for Edinburgh and south-west for bringing forward this
The results, the survival rates were some of the least survival will cancers like pancreatic cancer, brain can, stomach cancer are stuck at just 16%. Which is not good enough. Seven weeks ago I lost my dad. More times has passed since his death than the time we had between his diagnosis
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raw. I thank my honourable friend for
**** Possible New Speaker ****
I thank my honourable friend for giving way and want to pay tribute to her dad. He would be extremely proud of her and the speech she is making today and contribution to this debate.
**** Possible New Speaker ****
Thank you very much for that
**** Possible New Speaker ****
Thank you very much for that intervention. The brain tumour Charity and brain tumour research highlighted that time and time again, just one% of national cancer research funding goes towards brain tumours despite them being the biggest cancer killer of children and adults under 40, and that is totally unacceptable. People who are dealing with these devastating diagnoses need more than words, they need investment in clinical trials and pathways to diagnosis of this bill is about fairness. It is about making sure that tackling the lack of funding, the difficulty getting patients into research and the absence of clear government leadership in this area.
People miss out beyond life changing trials because they Sibley don't know that they exist, we talked about the Member for Mitcham and Morden talked about the system in this country but we also have one of the most silo systems the people in one part of the system often don't know what is going on in other parts, we need that to stop. We also talked a lot about the importance of the approaches in places like the iter states with targeted policies, have led to new treatments for right cancers.
But also we need to recognise the other aspect of what's going on in the United States when executive orders from the White House butting higher education and their clinical trials currently into a tailspin. I want to pay tribute to the people that have helped me a lot over the last few weeks, in particular paying tribute to my honourable friend from Mitcham and Morden. She talks about being angry, but I just remember that anger is a natural part of grief and a natural stage of grief.
But it is also a massive driver for change and for getting things done. I am not at the angry stage just yet, I will be at some stage, and when I get there I will certainly be joining you. It is something that we get. Some but -- somebody said to me many years ago that the greatest gift somebody, that one of us can give is the gift No matter what our political differences on any other part of this, we have a chance today to give others the gift of time.
To make sure no other families like ours go through what we have. Please pass
**** Possible New Speaker ****
this bill. Thank you. I want to begin by thanking the honourable member for Edinburgh and honourable member for Edinburgh and south-west for bringing forward this
12:02
Paulette Hamilton MP (Birmingham Erdington, Labour)
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Paulette Hamilton MP (Birmingham Erdington, Labour)
south-west for bringing forward this important piece of legislation and for his tireless work in championing the need for greater focus on research into rarer cancers. Having worked as a district nurse for over 25 years, I have seen again and again the devastation that cancer brings, not just to those, but their families, friends and communities. One in two of us will face cancer at some point in our lives, an issue that touches us at some -- all in some ways.
While we have made strides in cancer treatment and survival rates, progress has not been equal. Some cancers, like rarer, less of, have been unjustly left behind. Cancers such as pancreatic, oesophageal, stomach, still face staggeringly low survival rates. As it stands today, the least survivable cancers have a five year survival rate of just 16 percent compared to 55 percent of all other cancers. This disparity is not just a statistic, it is a failure in our services and the way it is researched.
One that has cost lives, shattered families and left too many of us without hope. The key driver of this has been the chronic of this has been the chronic underfunding and lack of focus on research into these cancers, which has meant that we lack tests, the tools and treatments needed to give people a fighting chance and the consequences of this neglect are devastating. This issue is deeply personal to me. I have lost loved ones to pancreatic cancer, a disease that steals lives with Ruth the.
I lost my best friend, a woman full of life and love, to this cruel Months of inefficiency before receiving a diagnosis in August, to pass away shortly after. Her story of delayed diagnosis, missed opportunities, a system that failed her and her story is not unique. I find it shocking that in 2025, more than half of those diagnosed with pancreatic cancer will die within three months and only seven percent of people will survive. Pancreatic cancer is the fifth biggest cancer killer in the UK, but receives only three percent of the UK cancer research budget.
This lack of investment has meant we are not seeing the treatment breakthroughs that have transformed outcomes for other types of cancer. But it does not even have to be this way. We know sustained research funding and strategic focus from the government can dramatically improve survival rates. We have seen it work for other cancers. I particularly welcome... This is why I support the bill, I welcome the proposal to nominate a named lead to focus on these rarer cancers, ensuring they are no longer overlooked, and to give people a better opportunity to take part in innovative, cutting- edge trials.
The rare cancers bill offers a roadmap to bring real life, life-saving changes, to those diagnosed with life-threatening diseases. This bill is not just about policy, it is about people. It is about giving hope to those who have been left behind. As chair of the APPG unless survivable, and I am also the vice chair of the health Select Committee, I firmly believe that through the proposed provisions of this bill, we can start to bring forward access to innovative treatments.
Let others be bold. Let us make a difference. Let us ensure that future generations have a better chance of survival than those that came before them. Let us send a clear message to patients and their families that they are not forgotten. This is our moment to make a lasting impact. Let us make make a lasting impact. Let us make it count. Let us support this bill.
While we have made strides in cancer treatment and survival rates, progress has not been equal. Some cancers, like rarer, less of, have been unjustly left behind. Cancers such as pancreatic, oesophageal, stomach, still face staggeringly low survival rates. As it stands today, the least survivable cancers have a five year survival rate of just 16 percent compared to 55 percent of all other cancers. This disparity is not just a statistic, it is a failure in our services and the way it is researched.
One that has cost lives, shattered families and left too many of us without hope. The key driver of this has been the chronic of this has been the chronic underfunding and lack of focus on research into these cancers, which has meant that we lack tests, the tools and treatments needed to give people a fighting chance and the consequences of this neglect are devastating. This issue is deeply personal to me. I have lost loved ones to pancreatic cancer, a disease that steals lives with Ruth the.
I lost my best friend, a woman full of life and love, to this cruel Months of inefficiency before receiving a diagnosis in August, to pass away shortly after. Her story of delayed diagnosis, missed opportunities, a system that failed her and her story is not unique. I find it shocking that in 2025, more than half of those diagnosed with pancreatic cancer will die within three months and only seven percent of people will survive. Pancreatic cancer is the fifth biggest cancer killer in the UK, but receives only three percent of the UK cancer research budget.
This lack of investment has meant we are not seeing the treatment breakthroughs that have transformed outcomes for other types of cancer. But it does not even have to be this way. We know sustained research funding and strategic focus from the government can dramatically improve survival rates. We have seen it work for other cancers. I particularly welcome... This is why I support the bill, I welcome the proposal to nominate a named lead to focus on these rarer cancers, ensuring they are no longer overlooked, and to give people a better opportunity to take part in innovative, cutting- edge trials.
The rare cancers bill offers a roadmap to bring real life, life-saving changes, to those diagnosed with life-threatening diseases. This bill is not just about policy, it is about people. It is about giving hope to those who have been left behind. As chair of the APPG unless survivable, and I am also the vice chair of the health Select Committee, I firmly believe that through the proposed provisions of this bill, we can start to bring forward access to innovative treatments.
Let others be bold. Let us make a difference. Let us ensure that future generations have a better chance of survival than those that came before them. Let us send a clear message to patients and their families that they are not forgotten. This is our moment to make a lasting impact. Let us make make a lasting impact. Let us make it count. Let us support this bill.
12:07
Daniel Francis MP (Bexleyheath and Crayford, Labour)
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Daniel Francis MP (Bexleyheath and Crayford, Labour)
I want to pay tribute to my honourable friend for introducing the bill and his work in bringing about this necessary debate on rare cancers. I would like to pay tribute to all members who have spoken, particularly my honourable friend from Calder Valley for his heartbreaking tribute. I have been on the receiving end of the devastating news that a loved one has been diagnosed with cancer. When the cancer is diagnosed as rare, it is more terrifying when confronted there is a lack of funding and research dedicated to rare cancers.
I welcome the three steps the bill would take to encourage further research into the cancers. I welcome that this bill would place a duty on the Secretary of State for Health and Social Care to facilitate the otherwise promote research into rare cancers. This would ensure appropriate arrangements are in place for patients to be easily contacted about research opportunities and clinical trials. It would ensure there is adequate oversight of research delivery for rare cancers. I would like to pay tribute to my honourable friend for her dedication in bringing Clive and other types of brain cancers to the forefront of the debate.
-- Glioma. forefront of the debate. -- Glioma. And also the brain tumour Society. I have seen firsthand how devastating this cancer can be. My dear friends and constituents lost their son in 2022. He was diagnosed with this cancer aged 58 in June 2022, and he died two months later. The family supported the work of the brain tumour Charity in order to help find new treatments, offer support and drive change, with the charity's aims of carrying out research.
They are fast growing brain tumours and are the most common type of this type of cancer in adults and there is still a lack of funding. Only 16 percent of the research on rare cancers is focused on the brain. I welcome the bill and thank my honourable friend and place on the record might support for the -- my support for the research.
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I will try to keep my remarks brief, keen that other colleagues get to speak in this debate. Rare cancers are defined as those that affect fewer than one in 2,000 affect fewer than one in 2,000 individuals. This equates to impacting an estimated 1,500 people.
I welcome the three steps the bill would take to encourage further research into the cancers. I welcome that this bill would place a duty on the Secretary of State for Health and Social Care to facilitate the otherwise promote research into rare cancers. This would ensure appropriate arrangements are in place for patients to be easily contacted about research opportunities and clinical trials. It would ensure there is adequate oversight of research delivery for rare cancers. I would like to pay tribute to my honourable friend for her dedication in bringing Clive and other types of brain cancers to the forefront of the debate.
-- Glioma. forefront of the debate. -- Glioma. And also the brain tumour Society. I have seen firsthand how devastating this cancer can be. My dear friends and constituents lost their son in 2022. He was diagnosed with this cancer aged 58 in June 2022, and he died two months later. The family supported the work of the brain tumour Charity in order to help find new treatments, offer support and drive change, with the charity's aims of carrying out research.
They are fast growing brain tumours and are the most common type of this type of cancer in adults and there is still a lack of funding. Only 16 percent of the research on rare cancers is focused on the brain. I welcome the bill and thank my honourable friend and place on the record might support for the -- my support for the research.
**** Possible New Speaker ****
I will try to keep my remarks brief, keen that other colleagues get to speak in this debate. Rare cancers are defined as those that affect fewer than one in 2,000 affect fewer than one in 2,000 individuals. This equates to impacting an estimated 1,500 people.
12:10
Sarah Smith MP (Hyndburn, Labour)
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Sarah Smith MP (Hyndburn, Labour)
impacting an estimated 1,500 people. In my constituency. Behind every number is a story of a patient and those who loved them, lives that could have been saved or prolonged had the right treatment and diagnosis been available. I want to speak of the constituency have reached out to me in some of my personal experience. I am grateful to Carol who has reached out on behalf of herself and her daughter, Emma, who is currently battling a rare cancer and is the mum of two girls.
And for whom we know every day, every advancement could be transformational for that family. I want to thank Janet who lost her granddaughter, Elizabeth. Elizabeth was a real fighter. She raised over £100,000 before she died. She left her body for research. Demonstrating what individuals are doing on this fight and therefore probing a question to the government which is, it is your turn now to step in and meet these families and these communities with what they are already putting in. I also want to thank Sheila who lost both of her sister Margaret, as well as her father-in-law, to pancreatic cancer.
And Millie, the incredible young girl who died of leukaemia when she was just 11 years old. Not 18 months after first being diagnosed. Her mother always reminds me to talk about many's life and what she bought while she was with us. She should have turned 16 last year but she was the girl with the brightest smile who took on a life and everything it throughout her and was brave to the last. We own it in the Millie and her mum's work the action today to do all we can to tackle this in the future.
When I was in my late 20s, one of my best friends lost her mother and her sister within a year, want to melanoma and the other to ovarian cancer. -- One. If they had been living in America, at least for one, if not most, we would have had more time. That is not good enough. I refuse to accept that. Today, we can take steps to make sure that people like my honourable friend do not have to be left literally with none of their family and can have that precious time, no matter how long that might be, because every day, every weekend every birthday counts.
In conclusion, the rare cancers bill represents a comprehensive approach to addressing the disparities faced by individuals with rare cancers, revising a regulatory framework, promoting dedicated research and facilitating patient participation in trials, the legislation has the ability to transform the landscape of rare cancer treatment in the UK. I'm glad the government is supporting this bill as part of development of a desperately needed national can supply and, recognising the provisions of the bill are -- national can plan. Step bill are
**** Possible New Speaker ****
patients. I commend my honourable friend for bringing forward this bill and honourable members across the House for the moving speeches. Particularly those of the members for Calder Valley, Mitcham & Morden and for others, you show that the love of a sibling or child persist forever and can be harnessed to bring about change. I'm speaking
And for whom we know every day, every advancement could be transformational for that family. I want to thank Janet who lost her granddaughter, Elizabeth. Elizabeth was a real fighter. She raised over £100,000 before she died. She left her body for research. Demonstrating what individuals are doing on this fight and therefore probing a question to the government which is, it is your turn now to step in and meet these families and these communities with what they are already putting in. I also want to thank Sheila who lost both of her sister Margaret, as well as her father-in-law, to pancreatic cancer.
And Millie, the incredible young girl who died of leukaemia when she was just 11 years old. Not 18 months after first being diagnosed. Her mother always reminds me to talk about many's life and what she bought while she was with us. She should have turned 16 last year but she was the girl with the brightest smile who took on a life and everything it throughout her and was brave to the last. We own it in the Millie and her mum's work the action today to do all we can to tackle this in the future.
When I was in my late 20s, one of my best friends lost her mother and her sister within a year, want to melanoma and the other to ovarian cancer. -- One. If they had been living in America, at least for one, if not most, we would have had more time. That is not good enough. I refuse to accept that. Today, we can take steps to make sure that people like my honourable friend do not have to be left literally with none of their family and can have that precious time, no matter how long that might be, because every day, every weekend every birthday counts.
In conclusion, the rare cancers bill represents a comprehensive approach to addressing the disparities faced by individuals with rare cancers, revising a regulatory framework, promoting dedicated research and facilitating patient participation in trials, the legislation has the ability to transform the landscape of rare cancer treatment in the UK. I'm glad the government is supporting this bill as part of development of a desperately needed national can supply and, recognising the provisions of the bill are -- national can plan. Step bill are
**** Possible New Speaker ****
patients. I commend my honourable friend for bringing forward this bill and honourable members across the House for the moving speeches. Particularly those of the members for Calder Valley, Mitcham & Morden and for others, you show that the love of a sibling or child persist forever and can be harnessed to bring about change. I'm speaking
12:14
John Slinger MP (Rugby, Labour)
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John Slinger MP (Rugby, Labour)
bring about change. I'm speaking today because my constituent contacted me about his son, Stephen, who was training to be an RAF pilot when diagnosed with a cancer at 19. Despite his cancer being described as low grade and despite receiving treatment that prolonged his life, he died six years later, aged just 26. I can imagine the pain and sense of loss felt by Stephen's family and friends. My heart goes out to them all who have faced the consequences of this rule disease.
The family have campaigned tirelessly to address the baffling paradox that despite brain tumours killing more children and adults under 40 than any other cancer, and they rob patients of more years of their lives than any other cancer also, only a fraction of the government's research funding into cancer is used for brain tumours. Including two -- according to the charity, brain tumour research, just over three percent of national spend. Stephen's case is dark, a talented young man who died young and lost perhaps 50 years of life, 50 years of potential.
A huge Public Petition and an article written by his sister, Maria, led in 2015 to the new Petitions Committee of this House conducting its first inquiry. I challenge any honourable right honourable member to read the conclusions from 2016, nine years ago, and not conclude that in general, so little has improved since then. We should be concerned and perhaps as my honourable friend, the member for Mitcham & Morden indicated, the appropriate emotion should be stronger. We hear the additional £40 million pledged by the last government, we hear of it and how 28 million of this is yet to and how 28 million of this is yet to After one of the relevant authorities, the nationalist and carer research came to see us at the All Party Parliamentary Group on brain tumours recently, my colleagues and the campaigners, patients and families present still could not fathom just why the money had been spent in all those years.
I am relatively new to this place, but I have been exurban like observing politics for a long time and some thing about this issue doesn't fit. Doesn't feel right. Something is profoundly wrong. Whether it should be outraged, there appears to be relative -- where chair should be outraged that appears to be relative indifference, not to suffering of course but the need for radical change to get money flowing full stop when there should be urgency among the authorities for people who are after all dying often young, there appears to be a degree of inertia.
And where there should be action we often get lost in the chilling snowstorm of bureaucracy. I'm not impugning the decency, compassion or professionalism of officials, researchers or clinicians, they are of course committed to helping cure, treat and prevent cancer. But as with other examples of institutional failure, it does not take over malice, just the absence of grip, of tenacity in the face of injustice, or of challenging the status quo were good things not to happen or even for bad and preventable outcomes to occur.
I do not know why this doesn't seem to be happening. What reasons could there possibly be for the continuing paradox of the underfunding of rare cancer research? We must find out and overcome these reasons, these forces or perhaps even vested interest because state -- stakes couldn't be higher full stop little has changed in treatment terms or treatment and survivability since the 1960s. Patients with Bain -- brain tumours do not have time on their side as has been mentioned by many honourable members.
As most of those diagnosed sadly die within those diagnosed sadly die within The following statistics that I will read out from brain tumour research are stark but before I read them I should point out that I am glad of the progress made on more common cancers which have affected my family as they have every family. Brain tumours kill more children than leukaemia. They kill more men under 70 than prostate cancer and more women under 35 than breast- cancer. Incidences of and deaths from brain tumours are increasing.
At the current rate of spending it could take 100 years for brain can to catch up with developments in other diseases and to find a cure. That is why my honourable friend's bill is so needed. Because it offers practical steps to get more funding into research to take on and defeat these cancers. Finally I know my ministerial colleagues want only the best for patients so can I gently encourage them if they haven't really done so to ask this question of officials.
Why is it that research into these cancers which cause so much death and suffering among the young, which rubs only people of so many years of life receiving so little funding? They should keep asking until they get a satisfactory answer. MPs should keep asking until we get a satisfactory answer. Should work together across party if possible to overcome obstacles. And we should certainly therefore pass this bill. The pain, loss, concern and even anger must be channelled into urgent, substantive action stop it to the past, current and future victims of rare cancers and their families.
**** Possible New Speaker ****
Can I also thank my honourable friend the Member for Edinburgh South West for bringing forward this bill, if as we always say politics bill, if as we always say politics is the language of priorities, then my honourable friend has got his my honourable friend has got his priorities absolutely correct. I would also like to thank all those members who shared experiences and stories, some of them incredibly stories, some of them incredibly moving and they really should be what inspires us to take all of this action that we are proposing today
The family have campaigned tirelessly to address the baffling paradox that despite brain tumours killing more children and adults under 40 than any other cancer, and they rob patients of more years of their lives than any other cancer also, only a fraction of the government's research funding into cancer is used for brain tumours. Including two -- according to the charity, brain tumour research, just over three percent of national spend. Stephen's case is dark, a talented young man who died young and lost perhaps 50 years of life, 50 years of potential.
A huge Public Petition and an article written by his sister, Maria, led in 2015 to the new Petitions Committee of this House conducting its first inquiry. I challenge any honourable right honourable member to read the conclusions from 2016, nine years ago, and not conclude that in general, so little has improved since then. We should be concerned and perhaps as my honourable friend, the member for Mitcham & Morden indicated, the appropriate emotion should be stronger. We hear the additional £40 million pledged by the last government, we hear of it and how 28 million of this is yet to and how 28 million of this is yet to After one of the relevant authorities, the nationalist and carer research came to see us at the All Party Parliamentary Group on brain tumours recently, my colleagues and the campaigners, patients and families present still could not fathom just why the money had been spent in all those years.
I am relatively new to this place, but I have been exurban like observing politics for a long time and some thing about this issue doesn't fit. Doesn't feel right. Something is profoundly wrong. Whether it should be outraged, there appears to be relative -- where chair should be outraged that appears to be relative indifference, not to suffering of course but the need for radical change to get money flowing full stop when there should be urgency among the authorities for people who are after all dying often young, there appears to be a degree of inertia.
And where there should be action we often get lost in the chilling snowstorm of bureaucracy. I'm not impugning the decency, compassion or professionalism of officials, researchers or clinicians, they are of course committed to helping cure, treat and prevent cancer. But as with other examples of institutional failure, it does not take over malice, just the absence of grip, of tenacity in the face of injustice, or of challenging the status quo were good things not to happen or even for bad and preventable outcomes to occur.
I do not know why this doesn't seem to be happening. What reasons could there possibly be for the continuing paradox of the underfunding of rare cancer research? We must find out and overcome these reasons, these forces or perhaps even vested interest because state -- stakes couldn't be higher full stop little has changed in treatment terms or treatment and survivability since the 1960s. Patients with Bain -- brain tumours do not have time on their side as has been mentioned by many honourable members.
As most of those diagnosed sadly die within those diagnosed sadly die within The following statistics that I will read out from brain tumour research are stark but before I read them I should point out that I am glad of the progress made on more common cancers which have affected my family as they have every family. Brain tumours kill more children than leukaemia. They kill more men under 70 than prostate cancer and more women under 35 than breast- cancer. Incidences of and deaths from brain tumours are increasing.
At the current rate of spending it could take 100 years for brain can to catch up with developments in other diseases and to find a cure. That is why my honourable friend's bill is so needed. Because it offers practical steps to get more funding into research to take on and defeat these cancers. Finally I know my ministerial colleagues want only the best for patients so can I gently encourage them if they haven't really done so to ask this question of officials.
Why is it that research into these cancers which cause so much death and suffering among the young, which rubs only people of so many years of life receiving so little funding? They should keep asking until they get a satisfactory answer. MPs should keep asking until we get a satisfactory answer. Should work together across party if possible to overcome obstacles. And we should certainly therefore pass this bill. The pain, loss, concern and even anger must be channelled into urgent, substantive action stop it to the past, current and future victims of rare cancers and their families.
**** Possible New Speaker ****
Can I also thank my honourable friend the Member for Edinburgh South West for bringing forward this bill, if as we always say politics bill, if as we always say politics is the language of priorities, then my honourable friend has got his my honourable friend has got his priorities absolutely correct. I would also like to thank all those members who shared experiences and stories, some of them incredibly stories, some of them incredibly moving and they really should be what inspires us to take all of this action that we are proposing today
12:21
Patricia Ferguson MP (Glasgow West, Labour)
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Patricia Ferguson MP (Glasgow West, Labour)
forward. I was struck by the fact that the honourable member for Wokingham and I have something in Wokingham and I have something in common, something we probably wouldn't want to have in common in wouldn't want to have in common in that we are were both diagnosed with Breast Cancer Now 2008. I have to Breast Cancer Now 2008. I have to , it always feels slightly strange , it always feels slightly strange talking about it because no one has ever heard of it is not rare cancers such because it's a breast-cancer, although there are some for whom it's a soft tissue sarcoma but whatever, it's treated as a breast- cancer.
It's called a certain type of tumour, unlike other tumours it doesn't go into the ducts it actually goes into the connective tissue. So it presents very differently from other cancer, or quite differently from other cancers of the breast, and the treatment is also very different in that the only treatment that works is excision. Excision can be anything from -- to a mastectomy full stop hope as you get clear margins that mean you're going to be OK. But, and it's a big but, when a malignant tumour is present they can spread and they can be very difficult, in fact they can be impossible to treat.
That is when it becomes a very very different outcome. The reason I mention it today is because it's not a right cancer as such, but it can be very difficult to diagnose. It doesn't show up in a mammogram for example and there is no definitive explanation as to why they occur. There is some research going on now but it is not very conclusive as yet. There's a lot more work needs to happen and because there are so few incidences of it it is quite difficult to research.
The things we do know about it for certain are actually very random, they seem to me to be very random. They tend to me to be very random. They tend to In the left breast, why I have no idea, and they usually occur when a patient is in their 40s. As I have said they don't seem to respond to chemotherapy or radiotherapy and they are not thought to be genetic or hormonal. The reason I mention it today is because it can be quite a lonely thing to have an unusual cancer because if you're trying to explain its your family and friends that no it didn't sharpen a mammogram and no, I'm not getting chemotherapy or radiotherapy, no I don't know why it happened and no, I hadn't heard of it either, you do begin to doubt yourself and you begin to question what is actually going on.
For someone with a very rare cancer weather isn't a background of research weather isn't anything you can read where no one can give you a pamphlet about it and tell you what is happening, it must be incredibly difficult. It seems to me that we should know more about me that we should know more about cancer. And that we get 2025 and we know some things about cancer, we know how to treat some cancers but there are so many others that we really don't have the answer for.
We need people to be diagnosed more quickly, which means that we have to have the research. We need people to have the best possible treatment which means that we have to look at the drugs and find out what works and what doesn't work and where a drug can be transferred from one thing to another successfully. Crucially, we have to know why it is that some people get cancer and others don't. So this bill will make a huge difference to the lives of some of the people we've heard about today, and of course.
As we know it will be soon enough -- won't be soon enough. It's our responsibility, every single one of us, to make change happen. We have an opportunity today to take that step forward. My honourable friend the Member for Mitcham & Morden spoke about her sister Margaret who I worked for four-time in the Labour Party and I was reflecting while we were listening to other speeches about what we should -- she said today and you know, promised I wouldn't do this.
I think we all need to be angry. I think we need to shout it from the rooftops and we shout it from the rooftops and we need to say change begins today.
It's called a certain type of tumour, unlike other tumours it doesn't go into the ducts it actually goes into the connective tissue. So it presents very differently from other cancer, or quite differently from other cancers of the breast, and the treatment is also very different in that the only treatment that works is excision. Excision can be anything from -- to a mastectomy full stop hope as you get clear margins that mean you're going to be OK. But, and it's a big but, when a malignant tumour is present they can spread and they can be very difficult, in fact they can be impossible to treat.
That is when it becomes a very very different outcome. The reason I mention it today is because it's not a right cancer as such, but it can be very difficult to diagnose. It doesn't show up in a mammogram for example and there is no definitive explanation as to why they occur. There is some research going on now but it is not very conclusive as yet. There's a lot more work needs to happen and because there are so few incidences of it it is quite difficult to research.
The things we do know about it for certain are actually very random, they seem to me to be very random. They tend to me to be very random. They tend to In the left breast, why I have no idea, and they usually occur when a patient is in their 40s. As I have said they don't seem to respond to chemotherapy or radiotherapy and they are not thought to be genetic or hormonal. The reason I mention it today is because it can be quite a lonely thing to have an unusual cancer because if you're trying to explain its your family and friends that no it didn't sharpen a mammogram and no, I'm not getting chemotherapy or radiotherapy, no I don't know why it happened and no, I hadn't heard of it either, you do begin to doubt yourself and you begin to question what is actually going on.
For someone with a very rare cancer weather isn't a background of research weather isn't anything you can read where no one can give you a pamphlet about it and tell you what is happening, it must be incredibly difficult. It seems to me that we should know more about me that we should know more about cancer. And that we get 2025 and we know some things about cancer, we know how to treat some cancers but there are so many others that we really don't have the answer for.
We need people to be diagnosed more quickly, which means that we have to have the research. We need people to have the best possible treatment which means that we have to look at the drugs and find out what works and what doesn't work and where a drug can be transferred from one thing to another successfully. Crucially, we have to know why it is that some people get cancer and others don't. So this bill will make a huge difference to the lives of some of the people we've heard about today, and of course.
As we know it will be soon enough -- won't be soon enough. It's our responsibility, every single one of us, to make change happen. We have an opportunity today to take that step forward. My honourable friend the Member for Mitcham & Morden spoke about her sister Margaret who I worked for four-time in the Labour Party and I was reflecting while we were listening to other speeches about what we should -- she said today and you know, promised I wouldn't do this.
I think we all need to be angry. I think we need to shout it from the rooftops and we shout it from the rooftops and we need to say change begins today.
12:25
Leigh Ingham MP (Stafford, Labour)
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Leigh Ingham MP (Stafford, Labour)
Very powerful. benches with everyone today, the advocacy we have heard has been incredibly moving stop my own constituents I want to name those who asked me to be here and speak today, Rosalind, Mark and Michelle full stop they are in support of this bill as I. Right cancer patients face incredible challenges, delayed diagnoses, limited treatment options and a lack of research investment that often leaves them feeling forgotten. But this bill seeks to and will change that narrative.
A call to action for great investment, greater access to clinical trials in a stronger commitment to research that will ultimately save lives. Barriers to bureaucracy must not stand in the way of innovation that's why support the measures in the bill that will call for a comprehensive review of how we approve treatments for right cancers. The Member for Mitcham & Morden said that more powerfully than I ever could. This bill is about fairness, it's about dignity and hope. It's got significant support across this House from us all not just as politicians but as people who understand the value of everyday life, I hope we all get to vote for if today.
A call to action for great investment, greater access to clinical trials in a stronger commitment to research that will ultimately save lives. Barriers to bureaucracy must not stand in the way of innovation that's why support the measures in the bill that will call for a comprehensive review of how we approve treatments for right cancers. The Member for Mitcham & Morden said that more powerfully than I ever could. This bill is about fairness, it's about dignity and hope. It's got significant support across this House from us all not just as politicians but as people who understand the value of everyday life, I hope we all get to vote for if today.
12:27
Tracy Gilbert MP (Edinburgh North and Leith, Labour)
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Tracy Gilbert MP (Edinburgh North and Leith, Labour)
Can I thank everyone for the moving, passionate and powerful speeches today and can I congratulate my honourable friend from Edinburgh South West for bringing forward this bill and the work that he has done with so many stakeholders. I also commend him for sharing the story of his father-in- law who I know will be sadly missed by him and his family. The story of my honourable friend's father-in-law has prompted a significant number of my constituents in Edinburgh North & Leith to share their stories and advocacy is for this bill.
One particular story was from a Constituents friend who passed away aged 45 in November 2023. Their friend was diagnosed with two right cancers and on each occasion was informed by their doctors it was a cancer that they did not know how to treat. My Constituents friend tragically died unable to understand how more wasn't known about the right cancers. Despite the large number of money this been put into research and the winds that have been achieved in cancer treatment by scientists and medics over the last few decades.
In Edinburgh many cancer patients are treated at the Edinburgh cancer research centre at Weston General Hospital which borders my Edinburgh North & Leith constituency. Establishing 2022 the Cancer Research UK Scotland centre brings together the very best in cancer research from Edinburgh and Glasgow working with over 80 different teams. The centre has established processes and access to two of the largest cancer treatment centres in Scotland, making trials and research more efficient. The centre has a rare cancer that affects the lining of the lungs and De Minaur heart is one of the six research themes will stop I'm keen to hear from the member of the engagement that happened between him and the University of Edinburgh and the Edinburgh cancer research centre on this bill.
This bill crosses devolved and reserved areas. I believe in the pooling and sharing of resources in the same way that profit shouldn't be a barrier to research, neither should a border. I'm keen to hear from the member and the Minister on any discussions that have taken place with Scotland and other devolved ministers to ensure we work across the UK, utilising the research talent of the University of Edinburgh and others across the UK, and have a joined up approach to make breakthroughs in the treatment of care, right cancers.
In particular I'm keen to know there has been dialogue with Scotland and other devolved ministers on clauses 2 and three of the bill, and if devolved ministers have given any undertakings to replicate these proposals. In conclusion, I know this bill will make a difference to our constituents and I'm delighted to be able to speak in support of it today. My own mum Violet died two decades ago within six weeks of her cancer being diagnosed. I hope this bill will give hope and time to every family impacted with a cancer diagnosis.
One particular story was from a Constituents friend who passed away aged 45 in November 2023. Their friend was diagnosed with two right cancers and on each occasion was informed by their doctors it was a cancer that they did not know how to treat. My Constituents friend tragically died unable to understand how more wasn't known about the right cancers. Despite the large number of money this been put into research and the winds that have been achieved in cancer treatment by scientists and medics over the last few decades.
In Edinburgh many cancer patients are treated at the Edinburgh cancer research centre at Weston General Hospital which borders my Edinburgh North & Leith constituency. Establishing 2022 the Cancer Research UK Scotland centre brings together the very best in cancer research from Edinburgh and Glasgow working with over 80 different teams. The centre has established processes and access to two of the largest cancer treatment centres in Scotland, making trials and research more efficient. The centre has a rare cancer that affects the lining of the lungs and De Minaur heart is one of the six research themes will stop I'm keen to hear from the member of the engagement that happened between him and the University of Edinburgh and the Edinburgh cancer research centre on this bill.
This bill crosses devolved and reserved areas. I believe in the pooling and sharing of resources in the same way that profit shouldn't be a barrier to research, neither should a border. I'm keen to hear from the member and the Minister on any discussions that have taken place with Scotland and other devolved ministers to ensure we work across the UK, utilising the research talent of the University of Edinburgh and others across the UK, and have a joined up approach to make breakthroughs in the treatment of care, right cancers.
In particular I'm keen to know there has been dialogue with Scotland and other devolved ministers on clauses 2 and three of the bill, and if devolved ministers have given any undertakings to replicate these proposals. In conclusion, I know this bill will make a difference to our constituents and I'm delighted to be able to speak in support of it today. My own mum Violet died two decades ago within six weeks of her cancer being diagnosed. I hope this bill will give hope and time to every family impacted with a cancer diagnosis.
12:30
Juliet Campbell MP (Broxtowe, Labour)
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Juliet Campbell MP (Broxtowe, Labour)
I would like to begin by thanking my honourable friend from Edinburgh South West for moving this right cancers bill. Many of my constituents in Broxtowe have shared with me their experiences, their families experiences and their friends experiences with rare cancers. Right cancers make up almost half of cancer diagnosis so this right cancer bill is very much welcomed. One of my constituents wrote to me recently about their seven-year-old son who was diagnosed with a rare cancer, a rare form of brain can.
Sadly their son did not survive this cancer. Despite 75% survival rate. This cancer exists on a spectrum of high to low risk further complicating the ability to predict the outcome of treatment. I am here today representing this child, their family and other families affected by right cancers. I therefore welcome the increased research funding -- rare cancers, and support of early protection and diagnosis will stop I welcome this
**** Possible New Speaker ****
I will be brief because I understand we are at the end of the understand we are at the end of the debate but I want to rise in support of the bill and pay tribute to the Member for Edinburgh South West for
Sadly their son did not survive this cancer. Despite 75% survival rate. This cancer exists on a spectrum of high to low risk further complicating the ability to predict the outcome of treatment. I am here today representing this child, their family and other families affected by right cancers. I therefore welcome the increased research funding -- rare cancers, and support of early protection and diagnosis will stop I welcome this
**** Possible New Speaker ****
I will be brief because I understand we are at the end of the understand we are at the end of the debate but I want to rise in support of the bill and pay tribute to the Member for Edinburgh South West for
12:31
Johanna Baxter MP (Paisley and Renfrewshire South, Labour)
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Johanna Baxter MP (Paisley and Renfrewshire South, Labour)
bringing forward this legislation and for the dignified and collegiate manner in which he has gone about manner in which he has gone about that. There will be now up to 95 people in my constituency facing a lesser. 95 people he will wait longer for a diagnosis, he will face a postcode lottery for accessing personalised treatment and -- specialist treatment and left asking why there are few treatment options available. Rare cancers do not get the research at attention and funding they need.
The bill will introduce measures that will breakdown systemic barriers, preventing research and in rare cancers. These are not abstract Wallasey changes, they are life- saving reforms that mean that patients with rare cancers will have greater access to clinical trials, researchers will have better tools to study the diseases and pharmaceutical companies will be given stronger investments to invest in treatments that can transform lives. Behind every rare cancer diagnosis is a person fighting for their future, a family searching for answers and healthcare professionals looking for a better treatment option.
We cannot allow those individuals to be left behind simply because there condition is considered rare. Today we have the opportunity to change that by supporting this bill we send a clear message that is too rare to matter and no patient should be forgotten. I'm proud to support it and I thank my honourable friend for bringing forward the legislation. forward the legislation.
The bill will introduce measures that will breakdown systemic barriers, preventing research and in rare cancers. These are not abstract Wallasey changes, they are life- saving reforms that mean that patients with rare cancers will have greater access to clinical trials, researchers will have better tools to study the diseases and pharmaceutical companies will be given stronger investments to invest in treatments that can transform lives. Behind every rare cancer diagnosis is a person fighting for their future, a family searching for answers and healthcare professionals looking for a better treatment option.
We cannot allow those individuals to be left behind simply because there condition is considered rare. Today we have the opportunity to change that by supporting this bill we send a clear message that is too rare to matter and no patient should be forgotten. I'm proud to support it and I thank my honourable friend for bringing forward the legislation. forward the legislation.
12:33
Rt Hon Edward Argar MP (Melton and Syston, Conservative)
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Rt Hon Edward Argar MP (Melton and Syston, Conservative)
Can I start by extending my condolences to the honourable lady on the passing of her father. This is an important bill and I often say to constituents, if you wish to see the House of Commons at its best, watch on a Friday. I say that again today having heard this debate. It is rare for a shadow Secretary of State to take to the Front Bench on a Friday Private Members' Bill. But the debate we have heard today has reinforced my determination that I wish to be here this Friday.
As the honourable gentleman, the member for Bootle, says this is a bill of hope. I want to pay tribute to the honourable gentleman, the member for Edinburgh South West, 14th compelling articulation of the case for this bill. Also being willing to share something so personal as the loss of his father and his family's circumstances, which he set out with great dignity. The quality of the ... To pick out particular contributions. I have to pick up on the contribution by the honourable lady for Mitcham & Morden, when I was a Minister, we often worked with each other, spoke with each other, and the passion and determination and energy for change and something better that comes across in everything she does, I think, builds on the fact that this is a bill for hope.
I pay tribute to her for her work and dedication. I've been a member of this House for 10 years, a Minister for six of those. 2.5 of those were spent as a Minister in the Department for Health during those times that was so challenging for everyone, of the pandemic. But I have to say, I have rarely heard a speech so powerful, so moving and which held that House so completely is that of the honourable gentleman is that of the honourable gentleman for Calder Valley.
Although I did not know his brother, I suspect he would have been deeply proud of him today. As we have heard, rare in today. As we have heard, rare in this context is often a misnomer. Although instances of individual cancers are rare, collectively, they are all too prevalent. We have heard from honourable members that around 55 percent of all cancer deaths are down to rare cancers, also called down to rare cancers, also called rare cancers. The breadth of those is huge.
Blood cancers, cancers of female reproductive organs, head and neck cancers, pancreatic cancer, brain cancer, reliable a -- those that the honourable lady have spoken about. Children's cancers. We have seen the amazing work done by powerful campaigners on these issues and the huge array of charities in this space, cancer 52, The Brain Tumour Charity, Tessa Jowell Brain Cancer Mission, leukaemia UK, pancreatic cancer UK, and a range of other dedicated and amazing institutions. They do a fantastic job.
I met with pancreatic cancer UK recently to hear about their work, initially to discuss the issues of the drug shortages and the urgent need for some sort of solution to resolve this. Also to have the opportunity to talk with them more broadly about high career think cancer and rare cancers. They highlighted to me issues specific to pancreatic cancer, which I suspect similar to other rare cancers, challenges of diagnosis, late diagnosis, reliance on often only a single or small number of therapeutics with complex supply chains.
In the challenges of clinical trials when in the case of pancreatic cancer, so you, even when they are able to enlist on those trials, survive long enough to be able to provide the data that will make a real difference. This bill helps address this. Because each rare cancer is different, each needs focused research on treatment. Because of the drugs regime for rare cancers, there are incentives, under the 2021 regulations, there is the ability to incentivise pharmaceutical companies he may not be inclined to invest in research into areas where only a few, compared to the large numbers of other cancers, may benefit.
That regime seeks to give market exclusivity rights for 10 years, helping reduce the costs of market authorisations, but I think we have to ask questions this bill does, is it doing the job it needs to do to incentivise those companies to invest in the research in this space? The honourable lady touched on the NHS we purposely project. That is a practical way that while we wait for the specialist research to come through, we can still do something if we make that work effectively.
The honourable gentleman's bill goes a long way to addressing these. The review of the orphan drugs regime is hugely important, I welcome all of the provisions in his bill, particularly the specialist registry and sharing of information to get more people into trials. While there are some things I believe would benefit from further explanation, this is what Committee stage is for. I am happy to set out to the shadow Secretary of State that he has our support for the passage of the bill through its Second Reading and into committee.
There is a time to act, often, in this place and in life. I believe this is it. We have huge potential in this country and huge talent. Let us focus that on saving more lives and giving more precious time to more people. I'm very pleased and proud to offer my support to the honourable gentleman for the passage of his bill.
As the honourable gentleman, the member for Bootle, says this is a bill of hope. I want to pay tribute to the honourable gentleman, the member for Edinburgh South West, 14th compelling articulation of the case for this bill. Also being willing to share something so personal as the loss of his father and his family's circumstances, which he set out with great dignity. The quality of the ... To pick out particular contributions. I have to pick up on the contribution by the honourable lady for Mitcham & Morden, when I was a Minister, we often worked with each other, spoke with each other, and the passion and determination and energy for change and something better that comes across in everything she does, I think, builds on the fact that this is a bill for hope.
I pay tribute to her for her work and dedication. I've been a member of this House for 10 years, a Minister for six of those. 2.5 of those were spent as a Minister in the Department for Health during those times that was so challenging for everyone, of the pandemic. But I have to say, I have rarely heard a speech so powerful, so moving and which held that House so completely is that of the honourable gentleman is that of the honourable gentleman for Calder Valley.
Although I did not know his brother, I suspect he would have been deeply proud of him today. As we have heard, rare in today. As we have heard, rare in this context is often a misnomer. Although instances of individual cancers are rare, collectively, they are all too prevalent. We have heard from honourable members that around 55 percent of all cancer deaths are down to rare cancers, also called down to rare cancers, also called rare cancers. The breadth of those is huge.
Blood cancers, cancers of female reproductive organs, head and neck cancers, pancreatic cancer, brain cancer, reliable a -- those that the honourable lady have spoken about. Children's cancers. We have seen the amazing work done by powerful campaigners on these issues and the huge array of charities in this space, cancer 52, The Brain Tumour Charity, Tessa Jowell Brain Cancer Mission, leukaemia UK, pancreatic cancer UK, and a range of other dedicated and amazing institutions. They do a fantastic job.
I met with pancreatic cancer UK recently to hear about their work, initially to discuss the issues of the drug shortages and the urgent need for some sort of solution to resolve this. Also to have the opportunity to talk with them more broadly about high career think cancer and rare cancers. They highlighted to me issues specific to pancreatic cancer, which I suspect similar to other rare cancers, challenges of diagnosis, late diagnosis, reliance on often only a single or small number of therapeutics with complex supply chains.
In the challenges of clinical trials when in the case of pancreatic cancer, so you, even when they are able to enlist on those trials, survive long enough to be able to provide the data that will make a real difference. This bill helps address this. Because each rare cancer is different, each needs focused research on treatment. Because of the drugs regime for rare cancers, there are incentives, under the 2021 regulations, there is the ability to incentivise pharmaceutical companies he may not be inclined to invest in research into areas where only a few, compared to the large numbers of other cancers, may benefit.
That regime seeks to give market exclusivity rights for 10 years, helping reduce the costs of market authorisations, but I think we have to ask questions this bill does, is it doing the job it needs to do to incentivise those companies to invest in the research in this space? The honourable lady touched on the NHS we purposely project. That is a practical way that while we wait for the specialist research to come through, we can still do something if we make that work effectively.
The honourable gentleman's bill goes a long way to addressing these. The review of the orphan drugs regime is hugely important, I welcome all of the provisions in his bill, particularly the specialist registry and sharing of information to get more people into trials. While there are some things I believe would benefit from further explanation, this is what Committee stage is for. I am happy to set out to the shadow Secretary of State that he has our support for the passage of the bill through its Second Reading and into committee.
There is a time to act, often, in this place and in life. I believe this is it. We have huge potential in this country and huge talent. Let us focus that on saving more lives and giving more precious time to more people. I'm very pleased and proud to offer my support to the honourable gentleman for the passage of his bill.
12:40
Ashley Dalton MP, The Parliamentary Under-Secretary for Health and Social Care (West Lancashire, Labour)
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Ashley Dalton MP, The Parliamentary Under-Secretary for Health and Social Care (West Lancashire, Labour)
Firstly, let me say how sorry I was to hear my honourable friend, the member for Edinburgh South West, recently lost his father-in-law to a brain cancer. I congratulate him in introducing this legislation less than a year after his election. I know his wife and children will be proud to see him in the chamber today. I know he has the full support of many charities, pancreatic cancer UK, brain tumour Charity and Cancer Research UK. As well as people up and down the country who have written to their MP urging them to join this debate and vote for this bill.
I want to pay tribute to all of those honourable and right honourable members who have lost loved ones and remembered them so powerfully today. Thank you for the courage you have shown in sharing your stories today. I do not think there is anybody in this chamber or watching, either from the gallery or beyond, that could fail to have been moved by the really powerful stories from my honourable friends, the members for Calder friends, the members for Calder Valley, Cumbernauld and Kirkintilloch.
And the Member for Mitcham & Morden, to give particular thanks as she has come pain tirelessly on the issue of brain cancer following the untimely loss of her sister, Margaret. I would like to pay tribute to those who remember their constituents and I'm delighted to say that I will be soon with the Member for high burn, to discuss merely smiles. I wanted to take the opportunity to add my memories of Joe, Joe Chilcott, the son of my friends, he was diagnosed aged 10 with a brain tumour.
It was heartbreaking to lose him when he was just 18. I thank all of the honourable members who have spoken in this place today. I will seek to address many of the issues as possible raised. So many stories. So many stories and I would like to recognise those mentioned in the stories that were remembered and those in the gallery and those watching at home, he were here, willing this bill to succeed. In behalf of the government, it is my pleasure to pledge support to this bill.
We are undertaking fundamental reform of the NHS. People living with rare cancers must be at the heart of this change. Rare cancer patients deserve better and this bill gives them something we have heard spoken about across the House today. Hope. I would like to begin my remarks on what the bill will do and why we are supporting it and our policy on rare cancers more generally. Clinical research is one of the most important ways in which we can improve healthcare. By identifying the best way to prevent, diagnose and treat cancer.
The bill acts to encourage the placement of clinical trials for rare cancers in England by ensuring the patient population can easily be contacted by researchers, streamlining the recruitment process. It will ensure recruitment process. It will ensure government review of regulations relevant to drug designation, to ensure the regulations are continuing to deliver for patients. Innovations in the bill will complement the actions we are developing through the 10 year health plan and the National plan, to fix the NHS. And which I will expand later.
Research is a key part of this effort. That is why the Department of Health & Social Care, through the National Institute for Health and Care Research, invest over 1.6 billion per year in health over 1.6 billion per year in health over 1.6 billion per year in health research. In 2023/24, the -- there was... But as we have heard today, brain cancers have a devastating impact on patients and their loved ones. That is why there was a new package of opportunities for brain cancer research and established a new national brain tumour research consortium in December.
Bring together researchers from a range of different disciplines. That is in parallel to a dedicated funding call of research into wraparound care. The rehabilitation, quality-of-life for patients with brain tumours. We remain committed to accelerating new breakthroughs in high quality research to improve, drive improvement, diagnosis management and treatment of brain and other rare cancers, for better survival rates and patient outcomes. It has been mentioned about the £40 million promise for brain tumours and how that has been spent, as by the In the five years from 2018 to 2019 the NIHR has added lots of money into brain cancer with a further amount to enable brain tumour research.
That's 227 studies involving 8,500 people. The commitment rained remains in place and I confirm there is actually no upper limit on the funding and we are exploring additional research policy options to encourage more clinical trials in early phase research. In the development of medical devices and diagnostics. We also talked a lot about other rare cancers including breast-cancer and we are supporting research on that through the research infrastructure including biomedical research centres. We would welcome further funding applications for research on all conditions, including breast- cancer and we are continuing to look at whether abbreviated forms of breast magnetic residence imaging, so fast MRI can detect breast cancers that I missed by screening through mammography such as the other types of breast cancer have been mentioned today.
We are also supporting the opening of 171 studies on blood cancer. Providing an online registry called be part of research which allows users to search for studies relevant to them and to participate. Clinical trials are a crucial part of cancer research and they provide patients with early access to groundbreaking possibly life changing treatments. The measures in this bill strongly aligned with our commitments to this and aim to streamline clinical trial recruitment processes. The Member for Mitcham and Morden spoke passionately about how long it has taken to negotiate run that's my contract, we recognise this as an issue and we are beginning to make progress.
The NHS commercial contracting has been standardised in the end CVR has reduced study setup times by 36%. From 305 days to 194 days in the first 12 months analysis and we continue on that work. The Member for Wokingham and also the member from Bootle asked about how we are working across borders and we are taking forward the most significant reform of UK clinical trial regulations in over 20 years. Whilst maintaining robust protection and safeguarding clinical trial participants, the MHRA already authorises cross-border clinical trials including those conducted in the EU and I think is a UK based trial site.
The be part of research trial uses information from national and international sources. My honourable friend for Mitcham and Morden spoke so passionately and we've all commented on her passion and anger and I appreciate her frustration. I share her desire for radical action and I think we can all agree that the government's announcement yesterday on scrapping NHS England demonstrates our willingness to be bold, to take risks and to do things differently. There are several other things that people raised and I will come back to all honourable members with some more detailed information that they did raise.
But we don't have the time to do that today. What I did want to talk about and has been raised a number of times the national cancer plan. It's really important to fulfil our goal of transforming cancer care and we won't, we will not just cherry pick the most common cancers we need a rising tide that lifts all ships. I say to the House I cannot overstate as a person who is living with an incurable cancer myself, how deeply I feel the honour and the responsibility of being asked to drive our work in creating the national cancer plan.
It is my absolute honour. Excuse me for some but while we take those steps to fix cancer services I'm under no illusion that the government alrighty hold all of the answers. Honourable members it is my plea for you to work with us and share your expertise, these visit the shaping national cancer plan on the Department's website and contribute evidence. The government is committed to make a real difference for patients with rare cancers. For those affected by this devastating disease every discovery, every treatment, every moment matters.
We will do all we can to facilitate the passage of this bill here and in the other place. Thank you.
**** Possible New Speaker ****
With the leave of the House I called Doctor Scott Arthur to
I want to pay tribute to all of those honourable and right honourable members who have lost loved ones and remembered them so powerfully today. Thank you for the courage you have shown in sharing your stories today. I do not think there is anybody in this chamber or watching, either from the gallery or beyond, that could fail to have been moved by the really powerful stories from my honourable friends, the members for Calder friends, the members for Calder Valley, Cumbernauld and Kirkintilloch.
And the Member for Mitcham & Morden, to give particular thanks as she has come pain tirelessly on the issue of brain cancer following the untimely loss of her sister, Margaret. I would like to pay tribute to those who remember their constituents and I'm delighted to say that I will be soon with the Member for high burn, to discuss merely smiles. I wanted to take the opportunity to add my memories of Joe, Joe Chilcott, the son of my friends, he was diagnosed aged 10 with a brain tumour.
It was heartbreaking to lose him when he was just 18. I thank all of the honourable members who have spoken in this place today. I will seek to address many of the issues as possible raised. So many stories. So many stories and I would like to recognise those mentioned in the stories that were remembered and those in the gallery and those watching at home, he were here, willing this bill to succeed. In behalf of the government, it is my pleasure to pledge support to this bill.
We are undertaking fundamental reform of the NHS. People living with rare cancers must be at the heart of this change. Rare cancer patients deserve better and this bill gives them something we have heard spoken about across the House today. Hope. I would like to begin my remarks on what the bill will do and why we are supporting it and our policy on rare cancers more generally. Clinical research is one of the most important ways in which we can improve healthcare. By identifying the best way to prevent, diagnose and treat cancer.
The bill acts to encourage the placement of clinical trials for rare cancers in England by ensuring the patient population can easily be contacted by researchers, streamlining the recruitment process. It will ensure recruitment process. It will ensure government review of regulations relevant to drug designation, to ensure the regulations are continuing to deliver for patients. Innovations in the bill will complement the actions we are developing through the 10 year health plan and the National plan, to fix the NHS. And which I will expand later.
Research is a key part of this effort. That is why the Department of Health & Social Care, through the National Institute for Health and Care Research, invest over 1.6 billion per year in health over 1.6 billion per year in health over 1.6 billion per year in health research. In 2023/24, the -- there was... But as we have heard today, brain cancers have a devastating impact on patients and their loved ones. That is why there was a new package of opportunities for brain cancer research and established a new national brain tumour research consortium in December.
Bring together researchers from a range of different disciplines. That is in parallel to a dedicated funding call of research into wraparound care. The rehabilitation, quality-of-life for patients with brain tumours. We remain committed to accelerating new breakthroughs in high quality research to improve, drive improvement, diagnosis management and treatment of brain and other rare cancers, for better survival rates and patient outcomes. It has been mentioned about the £40 million promise for brain tumours and how that has been spent, as by the In the five years from 2018 to 2019 the NIHR has added lots of money into brain cancer with a further amount to enable brain tumour research.
That's 227 studies involving 8,500 people. The commitment rained remains in place and I confirm there is actually no upper limit on the funding and we are exploring additional research policy options to encourage more clinical trials in early phase research. In the development of medical devices and diagnostics. We also talked a lot about other rare cancers including breast-cancer and we are supporting research on that through the research infrastructure including biomedical research centres. We would welcome further funding applications for research on all conditions, including breast- cancer and we are continuing to look at whether abbreviated forms of breast magnetic residence imaging, so fast MRI can detect breast cancers that I missed by screening through mammography such as the other types of breast cancer have been mentioned today.
We are also supporting the opening of 171 studies on blood cancer. Providing an online registry called be part of research which allows users to search for studies relevant to them and to participate. Clinical trials are a crucial part of cancer research and they provide patients with early access to groundbreaking possibly life changing treatments. The measures in this bill strongly aligned with our commitments to this and aim to streamline clinical trial recruitment processes. The Member for Mitcham and Morden spoke passionately about how long it has taken to negotiate run that's my contract, we recognise this as an issue and we are beginning to make progress.
The NHS commercial contracting has been standardised in the end CVR has reduced study setup times by 36%. From 305 days to 194 days in the first 12 months analysis and we continue on that work. The Member for Wokingham and also the member from Bootle asked about how we are working across borders and we are taking forward the most significant reform of UK clinical trial regulations in over 20 years. Whilst maintaining robust protection and safeguarding clinical trial participants, the MHRA already authorises cross-border clinical trials including those conducted in the EU and I think is a UK based trial site.
The be part of research trial uses information from national and international sources. My honourable friend for Mitcham and Morden spoke so passionately and we've all commented on her passion and anger and I appreciate her frustration. I share her desire for radical action and I think we can all agree that the government's announcement yesterday on scrapping NHS England demonstrates our willingness to be bold, to take risks and to do things differently. There are several other things that people raised and I will come back to all honourable members with some more detailed information that they did raise.
But we don't have the time to do that today. What I did want to talk about and has been raised a number of times the national cancer plan. It's really important to fulfil our goal of transforming cancer care and we won't, we will not just cherry pick the most common cancers we need a rising tide that lifts all ships. I say to the House I cannot overstate as a person who is living with an incurable cancer myself, how deeply I feel the honour and the responsibility of being asked to drive our work in creating the national cancer plan.
It is my absolute honour. Excuse me for some but while we take those steps to fix cancer services I'm under no illusion that the government alrighty hold all of the answers. Honourable members it is my plea for you to work with us and share your expertise, these visit the shaping national cancer plan on the Department's website and contribute evidence. The government is committed to make a real difference for patients with rare cancers. For those affected by this devastating disease every discovery, every treatment, every moment matters.
We will do all we can to facilitate the passage of this bill here and in the other place. Thank you.
**** Possible New Speaker ****
With the leave of the House I called Doctor Scott Arthur to
12:51
Dr Scott Arthur MP (Edinburgh South West, Labour)
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**** Possible New Speaker ****
windup. With the leave of the House I would like to just thank a few people. First and foremost of course people. First and foremost of course the Minister for her speech, I met yesterday and she was filled with passion and energy for the subject. Genuine passion and energy and also excitement and it's great to see her come here today to use her power to support this bill and let's hope that's what happens will stop so thank you. I would also like to thank the shadow Secretary of State, before this debate people told me he was respected across the House and I think he has shown why so thank you for the.
I must also thank the Member for Crawley. People won't know this but he's worked really effectively right through this debate to ensure all the people who wanted to speak could speak, so thank you to him. I have to thank the whips and the Speaker's Office for managing this sensitively because it's been quite a difficult subject so thank you. I have to thank you Madam Deputy Speaker because it was you who pulled my ping-pong ball from the goldfish bowl. So thank you, it was very skilfully done.
I wish I had time to thank everyone who spoke in the debate but sadly I don't, you have my thanks and you have my respect. I think you have done a great job of thanking each other as this debate has proceeded so thank you all, I will be watching the debate again over the weekend it has been quite incredible and it's been quite moving. I have to thank colleagues from the Department of Health & Social Care in the box, they have been fantastic and without them this bill would not have happened.
Has been a few what I call private moments but they have been absolutely fantastic and it was very clear yesterday when I met them, the Minister. I have to thank the charities he backed the bill, they did not just pack it, they help get it to where it is. It wasn't just them backing the finished product they influenced and shaped it. I think that's why so many people here supporting it. I thank the staff in the Public Bill Office of course for their patients and so much more, and I have to thank the staff in my office.
It's a team effort. They deserve it, thank you. In all the contributions today I think I have evidence that people who face a rare cancer diagnosis do face a great injustice because their chances are so much slimmer and they face so much uncertainty. We've shown I think that we want change on the subject and we are harnessing that anger, we are not just being angry, we are using that to get even and I think that's really important. Quite think that's really important.
Quite often here in this room we talk but often there is not action, I think today we have talked, we have agreed and there's going to be action hopefully, so thank you, thank you,
**** Possible New Speaker ****
thank you. Most definitely Parliament at its
**** Possible New Speaker ****
Most definitely Parliament at its best. The question is that the bill is now read a second time. As many are of that opinion say, "Aye", and of the contrary, "No". The "Ayes" of the contrary, "No". The "Ayes" have it. I give the Frontbench a have it. I give the Frontbench a Members Members could Members could be Members could be seated Members could be seated we Members could be seated we can
**** Possible New Speaker ****
progress. Minister. Free school meals automatic registration of eligible children registration of eligible children Bill, second reading.
Dr Scott Arthur MP (Edinburgh South West, Labour)
**** Possible New Speaker ****
windup. With the leave of the House I would like to just thank a few people. First and foremost of course people. First and foremost of course the Minister for her speech, I met yesterday and she was filled with passion and energy for the subject. Genuine passion and energy and also excitement and it's great to see her come here today to use her power to support this bill and let's hope that's what happens will stop so thank you. I would also like to thank the shadow Secretary of State, before this debate people told me he was respected across the House and I think he has shown why so thank you for the.
I must also thank the Member for Crawley. People won't know this but he's worked really effectively right through this debate to ensure all the people who wanted to speak could speak, so thank you to him. I have to thank the whips and the Speaker's Office for managing this sensitively because it's been quite a difficult subject so thank you. I have to thank you Madam Deputy Speaker because it was you who pulled my ping-pong ball from the goldfish bowl. So thank you, it was very skilfully done.
I wish I had time to thank everyone who spoke in the debate but sadly I don't, you have my thanks and you have my respect. I think you have done a great job of thanking each other as this debate has proceeded so thank you all, I will be watching the debate again over the weekend it has been quite incredible and it's been quite moving. I have to thank colleagues from the Department of Health & Social Care in the box, they have been fantastic and without them this bill would not have happened.
Has been a few what I call private moments but they have been absolutely fantastic and it was very clear yesterday when I met them, the Minister. I have to thank the charities he backed the bill, they did not just pack it, they help get it to where it is. It wasn't just them backing the finished product they influenced and shaped it. I think that's why so many people here supporting it. I thank the staff in the Public Bill Office of course for their patients and so much more, and I have to thank the staff in my office.
It's a team effort. They deserve it, thank you. In all the contributions today I think I have evidence that people who face a rare cancer diagnosis do face a great injustice because their chances are so much slimmer and they face so much uncertainty. We've shown I think that we want change on the subject and we are harnessing that anger, we are not just being angry, we are using that to get even and I think that's really important. Quite think that's really important.
Quite often here in this room we talk but often there is not action, I think today we have talked, we have agreed and there's going to be action hopefully, so thank you, thank you,
**** Possible New Speaker ****
thank you. Most definitely Parliament at its
**** Possible New Speaker ****
Most definitely Parliament at its best. The question is that the bill is now read a second time. As many are of that opinion say, "Aye", and of the contrary, "No". The "Ayes" of the contrary, "No". The "Ayes" have it. I give the Frontbench a have it. I give the Frontbench a Members Members could Members could be Members could be seated Members could be seated we Members could be seated we can
**** Possible New Speaker ****
progress. Minister. Free school meals automatic registration of eligible children registration of eligible children Bill, second reading.
12:56
Private Members' Bills: Free School Meals (Automatic Registration of Eligible Children) Bill: Second Reading
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**** Possible New Speaker ****
I beg to move that the bill... No, just say now and sit back down again. Marvellous. Peter Lamb.
**** Possible New Speaker ****
down again. Marvellous. Peter Lamb. I beg to move the bill be now
**** Possible New Speaker ****
I beg to move the bill be now read a second time. I am very grateful for my good fortune in having the chance to move a bill in my first year as a member of this
Private Members' Bills: Free School Meals (Automatic Registration of Eligible Children) Bill: Second Reading
**** Possible New Speaker ****
I beg to move that the bill... No, just say now and sit back down again. Marvellous. Peter Lamb.
**** Possible New Speaker ****
down again. Marvellous. Peter Lamb. I beg to move the bill be now
**** Possible New Speaker ****
I beg to move the bill be now read a second time. I am very grateful for my good fortune in having the chance to move a bill in my first year as a member of this
12:56
Private Members' Bills: Free School Meals (Automatic Registration of Eligible Children) Bill: Second Reading
Peter Lamb MP (Crawley, Labour)
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Private Members' Bills: Free School Meals (Automatic Registration of Eligible Children) Bill: Second Reading
Peter Lamb MP (Crawley, Labour)
my first year as a member of this House. I seek to address in part one of my greatest policy concerns, childhood poverty. The last Labour government made reducing child poverty one of their most conditions in office, research by the Institute for Fiscal Studies has demonstrated that without the changes they had made to benefits, child poverty by 2010 would have increased by over one quarter. Instead it fell by over one quarter, it was a remarkable achievement under the circumstances.
Unfortunately the actions of the Conservatives over the years since have reversed much of this good work and today in one of the wealthiest countries in the world, almost 1/3 of our children, innocents who have no control whatsoever over their personal circumstances, are living in poverty. Harold Wilson famously said that the Labour Party has a moral crusade or it is nothing. If this government is to be judged on anything over the next five years, let it be how it treats the most honourable members of our society.
Like many members of my party I have found the decision not to immediately lift the two Child Benefit Extremely painful. We do not need further reports on how this has been one of the most significant drivers of child poverty under the last government, at this point I do not believe the book at the House of Commons library could spot any more evidence of it were to be submitted I do accept that 3.2 billion cannot Sibley be found overnight. If we are serious about ending child poverty need to consider all the issues in the round and the child poverty task force is a vital part of ensuring limited public money is used most effectively to address this crisis will top but what can we do here today while we await the findings of that task force to try and improve the conditions of those children living in poverty? Members will be aware that Private Members' bills cannot authorise new expenditure, and I don't seek to challenge that was this bill seeks simply seeks to ensure those children which this House has already stated should receive free meals at school actually receive them automatically unless parents actively opt out of the system.
Not a penny more expenditure than necessary to fulfil the social contract which generations of this Parliament has sustained with our poorest children. These are our poorest children, to qualify for free school meals requires a combined household income of £7400 or less. An income of roughly half the average rent in my constituency. I find it hard to believe that it is possible to sustain a household on such allowing. It is these children that this bill is looking to support.
The stories you can hear of child property are heartbreaking, not only the hunger and the impact on their performance at school but of the stigma. The stories of children attending -- pretending to get food out of their bag so they can fit in with a friend at school even when there is nothing.
**** Possible New Speaker ****
I thank him for giving way, former council leaders have to stick together and I pay tribute to him together and I pay tribute to him for bringing this bill forward. I myself as I mentioned in my Maiden speech was a recipient of free school meals and I remember that stigma, it stays with me today as I stigma, it stays with me today as I went and got a blue ticket to get lunch when my friends got yellow one. That runs very deep in me.
Does one. That runs very deep in me. Does he agree with me that the government poverty task force has to see everything in the round and we should welcome the government's announcements on free breakfast clubs and the trial of those clubs which will be rolled out, does he agree with me that we need to see that maxi urgency from the government and the ministers I'm sure he will do to address this as a systematic look at families and
**** Possible New Speaker ****
children in poverty? I agree and I'm grateful to my honourable friend for his intervention. The government is doing a lot to try and address this doing a lot to try and address this issue which isn't to say we can't try and do more as part of this. On the point of stigma concluding on, children are now pretending to bring children are now pretending to bring food out of their bags so they don't appear to not fitting even if they do not have the actual food.
We do not have the actual food. We should be very glad over the years since the system of free school meals has now changed so that you cannot tell which children are in receipt of free school meals which hopefully is a point I'll come back to but hopefully encourages parents to make use of the available option for them. Free school meals are estimated to save roughly £500 per child, against such low income this amount would make a huge difference and for a child affected by the two Child Benefit We are looking at increasing their income by over 1/5 or more.
So why, given the difference it could make the household, isn't every eligible family claiming? There are a range of reasons and in some cases there of reasons and in some cases there is a belief that children might be bullied due to being in receipt of free school meals, the point made by my honourable friend, if there is one immediate outcome of this debate I hope is to reinforce the message to parents that absolutely no one can now identify which child is on a free school meal.
There is no stigma in claiming, please please make the application. We know also that same barriers exist as with any other form of state support where barriers of language, agency or awareness and ability ensure those facing the greatest disadvantages in our society are least likely to access the support available, and these are
**** Possible New Speaker ****
This bill is so important because of what the honourable member said, it removes administrative barriers it removes administrative barriers that get in the way. And frequently can be overcome quite sensibly. It can be overcome quite sensibly. It still provides an option for parents which is important because not everyone would want that for their everyone would want that for their child. Does he agree that this government should do anything they
**** Possible New Speaker ****
government should do anything they can to remove any administrative barriers for things like this? It has been a while since I looked at the numbers. My looked at the numbers. My understanding was that when we look at the level of unclaimed benefits in our system, which is at least 10 times greater than the total value of Benefit Fraud in the system. People are choosing not to access support available, sometimes because of stigma, sometimes lack of awareness. The impact on our society is real and we should be doing everything we can to reduce the stigma around this.
We all pay in, to make sure that people we care When they fall on difficult times. We should do everything possible to avoid the vilification often put on people simply because they are poor. This is about the future of our country. Education is an investment in the future prosperity of our country and citizens. The bedrock of economic growth and enabling people to live independent and successful lives. And the involvement sounds improve educational outcomes. The most obvious is reducing hunger, the impact of which on concentration and educational performance is well known.
School meals were introduced 120 years ago next year to ensure that children received at least one that children received at least one school meal a day. And improving household incomes, positively correlated with educational outcomes. Children's in the lowest and second lowest decile is improved. The improvement carries all the way up until the top decile -- top 30 percent, because with all of the money spent on private of the money spent on private
**** Possible New Speaker ****
schools, education plateaus in that top 30 percent of incomes. On educational outcomes, would he agree that by auto-enrol in agree that by auto-enrol in children, it means schools are able to take advantage of many of the gateway supports that are premised gateway supports that are premised on how many children at that school on how many children at that school are on free school meals? Which schools are not getting. I'm sure people have had the same experience as I come speaking to schools carrying quite a heavy level of carrying quite a heavy level of debt, school dinner debts, because that schools themselves are having that schools themselves are having to provide meals for hungry children?
**** Possible New Speaker ****
Absolutely on that point, I am well aware of the amount of effort schools are having to do to deal schools are having to do to deal with the consequences of financial deprivation as part of this. It is important we try to ensure the important we try to ensure the statistics around free school meals are accurate. It is how we measure are accurate. It is how we measure any indicators of poverty. If there is a statistical link between some is a statistical link between some groups under reporting and that compared to other groups, we will have inaccurate figures in society have inaccurate figures in society around where deprivation is and how better to address that problem.
And there is people premium of £1455 per pupil, designed to counter the impact of deprivation on educational outcomes. The payment schools receive based on the number of pupils on free school meals. Low uptake is now directly limiting funding available to those schools where it would make the most amount of difference to educational outcomes. As a government ambitious in the education of our children and committed to securing high levels of economic growth, failure to address these matters of deprivation are ahead we will have to clear if we are going to succeed.
The Education Committee recently reported that we consider the arguments for auto- enrolment and free school meals for those children currently eligible those children currently eligible are conclusive. In the interest of improving health and educational outcomes for the poorest children, auto-enrolment must be brought in without delay. Pilots by local authorities which heavily bend rules of current legislation to try to get as many children as possible registered, have recently shown the scale of under registration and the impact auto-enrolment could have for families benefiting and for communities.
The government's figures suggest under registration stands at 11 percent. The research nationally and in my constituency suggests the overall figure could be higher. It is worth noting the £7400 income threshold cuts of the majority of children living in poverty in this country and do not poverty in this country and do not qualify for these school meals. For now, this bill will make the most amount of difference to the poorest children, benefiting them, their family, schools, and three the policy today, but I would hope that the Minister who has been generous with time with me, and committed to the uptake of free school meals, will be able to give a commitment that auto-enrolment will be given serious consideration as part of the work being done now to bring an end to child poverty in the United Kingdom.
I hope the debate today will serve to underline support amongst members of this House in bringing about this change in behalf of a vulnerable constituents. Surely the least our country has the right to expect of its parliament is that we will ensure that the nation's children are fed.
Unfortunately the actions of the Conservatives over the years since have reversed much of this good work and today in one of the wealthiest countries in the world, almost 1/3 of our children, innocents who have no control whatsoever over their personal circumstances, are living in poverty. Harold Wilson famously said that the Labour Party has a moral crusade or it is nothing. If this government is to be judged on anything over the next five years, let it be how it treats the most honourable members of our society.
Like many members of my party I have found the decision not to immediately lift the two Child Benefit Extremely painful. We do not need further reports on how this has been one of the most significant drivers of child poverty under the last government, at this point I do not believe the book at the House of Commons library could spot any more evidence of it were to be submitted I do accept that 3.2 billion cannot Sibley be found overnight. If we are serious about ending child poverty need to consider all the issues in the round and the child poverty task force is a vital part of ensuring limited public money is used most effectively to address this crisis will top but what can we do here today while we await the findings of that task force to try and improve the conditions of those children living in poverty? Members will be aware that Private Members' bills cannot authorise new expenditure, and I don't seek to challenge that was this bill seeks simply seeks to ensure those children which this House has already stated should receive free meals at school actually receive them automatically unless parents actively opt out of the system.
Not a penny more expenditure than necessary to fulfil the social contract which generations of this Parliament has sustained with our poorest children. These are our poorest children, to qualify for free school meals requires a combined household income of £7400 or less. An income of roughly half the average rent in my constituency. I find it hard to believe that it is possible to sustain a household on such allowing. It is these children that this bill is looking to support.
The stories you can hear of child property are heartbreaking, not only the hunger and the impact on their performance at school but of the stigma. The stories of children attending -- pretending to get food out of their bag so they can fit in with a friend at school even when there is nothing.
**** Possible New Speaker ****
I thank him for giving way, former council leaders have to stick together and I pay tribute to him together and I pay tribute to him for bringing this bill forward. I myself as I mentioned in my Maiden speech was a recipient of free school meals and I remember that stigma, it stays with me today as I stigma, it stays with me today as I went and got a blue ticket to get lunch when my friends got yellow one. That runs very deep in me.
Does one. That runs very deep in me. Does he agree with me that the government poverty task force has to see everything in the round and we should welcome the government's announcements on free breakfast clubs and the trial of those clubs which will be rolled out, does he agree with me that we need to see that maxi urgency from the government and the ministers I'm sure he will do to address this as a systematic look at families and
**** Possible New Speaker ****
children in poverty? I agree and I'm grateful to my honourable friend for his intervention. The government is doing a lot to try and address this doing a lot to try and address this issue which isn't to say we can't try and do more as part of this. On the point of stigma concluding on, children are now pretending to bring children are now pretending to bring food out of their bags so they don't appear to not fitting even if they do not have the actual food.
We do not have the actual food. We should be very glad over the years since the system of free school meals has now changed so that you cannot tell which children are in receipt of free school meals which hopefully is a point I'll come back to but hopefully encourages parents to make use of the available option for them. Free school meals are estimated to save roughly £500 per child, against such low income this amount would make a huge difference and for a child affected by the two Child Benefit We are looking at increasing their income by over 1/5 or more.
So why, given the difference it could make the household, isn't every eligible family claiming? There are a range of reasons and in some cases there of reasons and in some cases there is a belief that children might be bullied due to being in receipt of free school meals, the point made by my honourable friend, if there is one immediate outcome of this debate I hope is to reinforce the message to parents that absolutely no one can now identify which child is on a free school meal.
There is no stigma in claiming, please please make the application. We know also that same barriers exist as with any other form of state support where barriers of language, agency or awareness and ability ensure those facing the greatest disadvantages in our society are least likely to access the support available, and these are
**** Possible New Speaker ****
This bill is so important because of what the honourable member said, it removes administrative barriers it removes administrative barriers that get in the way. And frequently can be overcome quite sensibly. It can be overcome quite sensibly. It still provides an option for parents which is important because not everyone would want that for their everyone would want that for their child. Does he agree that this government should do anything they
**** Possible New Speaker ****
government should do anything they can to remove any administrative barriers for things like this? It has been a while since I looked at the numbers. My looked at the numbers. My understanding was that when we look at the level of unclaimed benefits in our system, which is at least 10 times greater than the total value of Benefit Fraud in the system. People are choosing not to access support available, sometimes because of stigma, sometimes lack of awareness. The impact on our society is real and we should be doing everything we can to reduce the stigma around this.
We all pay in, to make sure that people we care When they fall on difficult times. We should do everything possible to avoid the vilification often put on people simply because they are poor. This is about the future of our country. Education is an investment in the future prosperity of our country and citizens. The bedrock of economic growth and enabling people to live independent and successful lives. And the involvement sounds improve educational outcomes. The most obvious is reducing hunger, the impact of which on concentration and educational performance is well known.
School meals were introduced 120 years ago next year to ensure that children received at least one that children received at least one school meal a day. And improving household incomes, positively correlated with educational outcomes. Children's in the lowest and second lowest decile is improved. The improvement carries all the way up until the top decile -- top 30 percent, because with all of the money spent on private of the money spent on private
**** Possible New Speaker ****
schools, education plateaus in that top 30 percent of incomes. On educational outcomes, would he agree that by auto-enrol in agree that by auto-enrol in children, it means schools are able to take advantage of many of the gateway supports that are premised gateway supports that are premised on how many children at that school on how many children at that school are on free school meals? Which schools are not getting. I'm sure people have had the same experience as I come speaking to schools carrying quite a heavy level of carrying quite a heavy level of debt, school dinner debts, because that schools themselves are having that schools themselves are having to provide meals for hungry children?
**** Possible New Speaker ****
Absolutely on that point, I am well aware of the amount of effort schools are having to do to deal schools are having to do to deal with the consequences of financial deprivation as part of this. It is important we try to ensure the important we try to ensure the statistics around free school meals are accurate. It is how we measure are accurate. It is how we measure any indicators of poverty. If there is a statistical link between some is a statistical link between some groups under reporting and that compared to other groups, we will have inaccurate figures in society have inaccurate figures in society around where deprivation is and how better to address that problem.
And there is people premium of £1455 per pupil, designed to counter the impact of deprivation on educational outcomes. The payment schools receive based on the number of pupils on free school meals. Low uptake is now directly limiting funding available to those schools where it would make the most amount of difference to educational outcomes. As a government ambitious in the education of our children and committed to securing high levels of economic growth, failure to address these matters of deprivation are ahead we will have to clear if we are going to succeed.
The Education Committee recently reported that we consider the arguments for auto- enrolment and free school meals for those children currently eligible those children currently eligible are conclusive. In the interest of improving health and educational outcomes for the poorest children, auto-enrolment must be brought in without delay. Pilots by local authorities which heavily bend rules of current legislation to try to get as many children as possible registered, have recently shown the scale of under registration and the impact auto-enrolment could have for families benefiting and for communities.
The government's figures suggest under registration stands at 11 percent. The research nationally and in my constituency suggests the overall figure could be higher. It is worth noting the £7400 income threshold cuts of the majority of children living in poverty in this country and do not poverty in this country and do not qualify for these school meals. For now, this bill will make the most amount of difference to the poorest children, benefiting them, their family, schools, and three the policy today, but I would hope that the Minister who has been generous with time with me, and committed to the uptake of free school meals, will be able to give a commitment that auto-enrolment will be given serious consideration as part of the work being done now to bring an end to child poverty in the United Kingdom.
I hope the debate today will serve to underline support amongst members of this House in bringing about this change in behalf of a vulnerable constituents. Surely the least our country has the right to expect of its parliament is that we will ensure that the nation's children are fed.
13:07
Mrs Sharon Hodgson MP (Washington and Gateshead South, Labour)
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Mrs Sharon Hodgson MP (Washington and Gateshead South, Labour)
It is a privilege...
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time. It is a privilege to follow my honourable friend, the honourable honourable friend, the honourable member for Mansfield. I am so happy that he was able to be drawn in the Private Members' Bill ballot and also chosen this excellent subject also chosen this excellent subject and important topic for his Private and important topic for his Private Members' Bill. School food has been available, as my honourable friend said, for almost 120 years, thanks to a little known by most, MP for Bradford who introduced the concept in his Private Members' Bill in 1906, so he follows in the footsteps of her previous great man.
I thank him for that. Free school meals have existed in one form or another for the best part of 80 years. Countless generations of children who have received a hot, nutritious meal at lunchtime. Free school meals are life changing for pupils and no one better than myself. Growing up as a recipient of free school meals from almost the day I started school to the date I left school, the knowledge there would food at lunchtime gave my mother, me and my brothers, the security that going into the rest of the school day, I would not be hungry.
I echo those feelings of my honourable friend and the Member for Telford spoke of before, I also recall having a different dinner ticket and even worse, a different meal cutie stand in. Our key was served after the paid for children were served. It was horrifying. I am glad to say that does not happen anymore. Children are not made to be separated in such a way. But that stigma is still very real and alive today. No matter how hard schools try to alleviate it with cashless systems, et cetera, ask any child in school, who are the children on free school meals, and they will look to them straightaway.
They all know, I have been to many schools and I always ask them and they always nod that they know, sometimes because they are that child, but other times, because they know the other children are. That never leaves you, that stigma, it stays with you. We should not be subjecting our richest economy, should not be subjecting our children in school to that our children in school to that stigma any longer. We are all aware of the crosscutting benefits of free school meals.
I will not waste the houses time on relisting them all. Just to say, from increased attainment, attendance and more. Free school meals are a multifaceted policy that has widespread benefits across the country. I'm proud to be the founding and current chair of the schools food all-party groups since 2010, a group that was instrumental in shaping the universal free school meals scheme, as well as authors of the free school meals plan. We are still in discussion regarding the best delivery of universal primary breakfast club programme.
We want to help make the MPs and the stakeholders, I think 300 now, we all want the program to be that huge success we wanted to be. The APPG was packed, it was well attended by schools from stakeholders, we had around 50 there in attendance, I have known us to fill the committee room with 80 to 100 attendees and I hope the Minister, he has an open invitation to be able to attend when his diary allows.
The early adopters scheme due to rule out in the first 750 schools in this April will share was where learnings can be taken for a smooth introduction to all primary schools next year. But as the Member for Crawley has said, this government can and should go further. We can make marginal, low cost improvements to the statutory scheme of free school meals that we currently have by introducing an opt out system as outlined in this bill. We will capture around 200,000 children who are eligible for this crucial support but who currently are not receiving it.
Admin barriers should not mean that one in 10 students whose household income is already below the 7,400 threshold before benefits, miss out on free school meals support when they need it most. This bill on auto-enrolment cannot be seen as extra spending, government funding already exists for the children who are claiming this statutory support. It is the lowest of low hanging fruit. Increased free school meal up take goes on to unlock a whole host of other benefits also. Including vital free school meal funding.
Surely unlocking funding that already exists is the most logical and economically efficient way of this. Extending free school meals by automatic registration is to leave the most needy 200,000 children should be a no-brainer. I hope to see the government and the Minister rectify this at the earliest
**** Possible New Speaker ****
opportunity. I congratulate the honourable gentleman, the member for Crawley, gentleman, the member for Crawley, gentleman, the member for Crawley, unmoving this bill so ably. The last Conservative government massively expanded eligibility for free school expanded eligibility for free school meals, meaning the proportion of children and young people who were children and young people who were eligible for free school meals is much higher than was the case under any previous government. The
**** Possible New Speaker ****
time. It is a privilege to follow my honourable friend, the honourable honourable friend, the honourable member for Mansfield. I am so happy that he was able to be drawn in the Private Members' Bill ballot and also chosen this excellent subject also chosen this excellent subject and important topic for his Private and important topic for his Private Members' Bill. School food has been available, as my honourable friend said, for almost 120 years, thanks to a little known by most, MP for Bradford who introduced the concept in his Private Members' Bill in 1906, so he follows in the footsteps of her previous great man.
I thank him for that. Free school meals have existed in one form or another for the best part of 80 years. Countless generations of children who have received a hot, nutritious meal at lunchtime. Free school meals are life changing for pupils and no one better than myself. Growing up as a recipient of free school meals from almost the day I started school to the date I left school, the knowledge there would food at lunchtime gave my mother, me and my brothers, the security that going into the rest of the school day, I would not be hungry.
I echo those feelings of my honourable friend and the Member for Telford spoke of before, I also recall having a different dinner ticket and even worse, a different meal cutie stand in. Our key was served after the paid for children were served. It was horrifying. I am glad to say that does not happen anymore. Children are not made to be separated in such a way. But that stigma is still very real and alive today. No matter how hard schools try to alleviate it with cashless systems, et cetera, ask any child in school, who are the children on free school meals, and they will look to them straightaway.
They all know, I have been to many schools and I always ask them and they always nod that they know, sometimes because they are that child, but other times, because they know the other children are. That never leaves you, that stigma, it stays with you. We should not be subjecting our richest economy, should not be subjecting our children in school to that our children in school to that stigma any longer. We are all aware of the crosscutting benefits of free school meals.
I will not waste the houses time on relisting them all. Just to say, from increased attainment, attendance and more. Free school meals are a multifaceted policy that has widespread benefits across the country. I'm proud to be the founding and current chair of the schools food all-party groups since 2010, a group that was instrumental in shaping the universal free school meals scheme, as well as authors of the free school meals plan. We are still in discussion regarding the best delivery of universal primary breakfast club programme.
We want to help make the MPs and the stakeholders, I think 300 now, we all want the program to be that huge success we wanted to be. The APPG was packed, it was well attended by schools from stakeholders, we had around 50 there in attendance, I have known us to fill the committee room with 80 to 100 attendees and I hope the Minister, he has an open invitation to be able to attend when his diary allows.
The early adopters scheme due to rule out in the first 750 schools in this April will share was where learnings can be taken for a smooth introduction to all primary schools next year. But as the Member for Crawley has said, this government can and should go further. We can make marginal, low cost improvements to the statutory scheme of free school meals that we currently have by introducing an opt out system as outlined in this bill. We will capture around 200,000 children who are eligible for this crucial support but who currently are not receiving it.
Admin barriers should not mean that one in 10 students whose household income is already below the 7,400 threshold before benefits, miss out on free school meals support when they need it most. This bill on auto-enrolment cannot be seen as extra spending, government funding already exists for the children who are claiming this statutory support. It is the lowest of low hanging fruit. Increased free school meal up take goes on to unlock a whole host of other benefits also. Including vital free school meal funding.
Surely unlocking funding that already exists is the most logical and economically efficient way of this. Extending free school meals by automatic registration is to leave the most needy 200,000 children should be a no-brainer. I hope to see the government and the Minister rectify this at the earliest
**** Possible New Speaker ****
opportunity. I congratulate the honourable gentleman, the member for Crawley, gentleman, the member for Crawley, gentleman, the member for Crawley, unmoving this bill so ably. The last Conservative government massively expanded eligibility for free school expanded eligibility for free school meals, meaning the proportion of children and young people who were children and young people who were eligible for free school meals is much higher than was the case under any previous government. The
13:14
Mike Wood MP (Kingswinford and South Staffordshire, Conservative)
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Mike Wood MP (Kingswinford and South Staffordshire, Conservative)
any previous government. The evidence proves the inheritance we left behind in this area last July Kinder than the Labour government left as in 2010, one in three schoolchildren being able to get a free school meal, as opposed to one in six when the previous Labour government was last in office, despite a large fall in the number
**** Possible New Speaker ****
of workless households. We see in the bodies of children, increased extending with the average 10-year-old one centimetre shorter 10-year-old one centimetre shorter than they were in 2010. How does that square with what the Minister
**** Possible New Speaker ****
that square with what the Minister says? We see a malnutrition crisis. I think when you look at dietary
**** Possible New Speaker ****
I think when you look at dietary habits in recent decades, actually that is not confined to parts of the income spectrum. There has been a income spectrum. There has been a deterioration in the quality of diets going back over several decades, that is separate from More than 2.1 million pupils were eligible for benefits related to free school meals which amounted to 24.6% of all pupils. In addition, more than 90,000 disadvantaged students in further education received a free school meal at lunchtime.
Collectively the support lunchtime. Collectively the support of the children and young people who need it most to ensure they can make the most of their world-class education, boost their health and save their parents considerable amounts that they could not afford. I really must continue because I know that the government has promised to move the next bill that it can begin at 1:45 so I do need to keep the interventions to a minimum. We also introduced extensive protection which will be in effect since 2018.
They ensure that while Universal Credit being fully rolled out, any child eligible for free school meals would retain their entitlement and keep getting free school meals until the end of the phase, in other words until they completed either primary or secondary school. Even if their families income rose above the income threshold such that this would otherwise have stopped. On breakfast clubs, we know that breakfast is the most important meal of the day. Setting people up with the fuel they need to make the most of the day ahead and the evidence supports this.
For children, and I also add at this point that I probably ought to declare an interest in that my wife is in teaching although she is providing one-to-one teaching and special needs rather than a classroom at the moment, but for children we know that those who do not have breakfast are more likely to have issues with behaviour, with well-being and with learning. That is why the previous government expanded provision of breakfast, investing up to £35 million in the national school breakfast program.
This funding supported 2,700 schools in disadvantaged areas providing thousands of children with lowering, children from low-income families with a free nutritious breakfast at school to support their attainment, their well-being and their willingness to learn. Moreover we trusted school leaders to deliver, building a breakfast provision that fitted the needs of their pupils. This involved five different models ranging from a traditional breakfast club to a healthy grab and go. This program has had great success in supporting those who needed it most and I welcome the confirmation from the Minister that his party will continue to support this program until at least next March and I hope the support extends past that date.
the support extends past that date. But nutrition does not cease to be an issue outside of term time which is why the previous government rolled out the holiday activities and food program to support disadvantaged and low-income families in receipt of free school meals during the holiday period. Since 2018 this program has delivered enriching activities and nutritious food to the children and young people who needed it most with more than £200 million each year more than £200 million each year delivering 15.6 million half days to children and young people across every single one of the 153 local authorities in England.
Turning to this bill, this bill would require local authorities in England to identify each child of school age resident in its area who is eligible for free school meals. And also requires state funded schools that identify a child who is eligible to provide those meals will stop we support the desire to make sure that all those eligible for a free school meals have an opportunity to receive them, so do not wish to prevent this bill from proceeding. But I do have a couple of questions just around a couple of questions just around how the bill will achieve that.
But hopefully the sponsor may be able to address in his closing remarks so that members may consider it as the bill proceeds. I know the honourable member has extensive experience member has extensive experience within local authority, within local government and 20 local authorities have now piloted their own auto- enrolment schemes of some point. I would be interested to hear what consideration he has given in drafting this bill to the burden will be added to local authorities and whether he has any measure of the cost what it would mean for local taxpayers and what I would mean for savings for local families but also the additional income for schools through pupil premiums.
The bill would also give the powers to the Secretary of State to make provision for the definition of the term state funded school, interested in what circumstances the honourable member believes changing definition will be necessary. I will be clear here today as we were clearing government that we believe in targeting support to where it is most needed. We do believe that the state should do last but do it well, but that does mean -- include delivering sufficient support to those who need it most, particularly to children and young people.
to children and young people.
**** Possible New Speaker ****
of workless households. We see in the bodies of children, increased extending with the average 10-year-old one centimetre shorter 10-year-old one centimetre shorter than they were in 2010. How does that square with what the Minister
**** Possible New Speaker ****
that square with what the Minister says? We see a malnutrition crisis. I think when you look at dietary
**** Possible New Speaker ****
I think when you look at dietary habits in recent decades, actually that is not confined to parts of the income spectrum. There has been a income spectrum. There has been a deterioration in the quality of diets going back over several decades, that is separate from More than 2.1 million pupils were eligible for benefits related to free school meals which amounted to 24.6% of all pupils. In addition, more than 90,000 disadvantaged students in further education received a free school meal at lunchtime.
Collectively the support lunchtime. Collectively the support of the children and young people who need it most to ensure they can make the most of their world-class education, boost their health and save their parents considerable amounts that they could not afford. I really must continue because I know that the government has promised to move the next bill that it can begin at 1:45 so I do need to keep the interventions to a minimum. We also introduced extensive protection which will be in effect since 2018.
They ensure that while Universal Credit being fully rolled out, any child eligible for free school meals would retain their entitlement and keep getting free school meals until the end of the phase, in other words until they completed either primary or secondary school. Even if their families income rose above the income threshold such that this would otherwise have stopped. On breakfast clubs, we know that breakfast is the most important meal of the day. Setting people up with the fuel they need to make the most of the day ahead and the evidence supports this.
For children, and I also add at this point that I probably ought to declare an interest in that my wife is in teaching although she is providing one-to-one teaching and special needs rather than a classroom at the moment, but for children we know that those who do not have breakfast are more likely to have issues with behaviour, with well-being and with learning. That is why the previous government expanded provision of breakfast, investing up to £35 million in the national school breakfast program.
This funding supported 2,700 schools in disadvantaged areas providing thousands of children with lowering, children from low-income families with a free nutritious breakfast at school to support their attainment, their well-being and their willingness to learn. Moreover we trusted school leaders to deliver, building a breakfast provision that fitted the needs of their pupils. This involved five different models ranging from a traditional breakfast club to a healthy grab and go. This program has had great success in supporting those who needed it most and I welcome the confirmation from the Minister that his party will continue to support this program until at least next March and I hope the support extends past that date.
the support extends past that date. But nutrition does not cease to be an issue outside of term time which is why the previous government rolled out the holiday activities and food program to support disadvantaged and low-income families in receipt of free school meals during the holiday period. Since 2018 this program has delivered enriching activities and nutritious food to the children and young people who needed it most with more than £200 million each year more than £200 million each year delivering 15.6 million half days to children and young people across every single one of the 153 local authorities in England.
Turning to this bill, this bill would require local authorities in England to identify each child of school age resident in its area who is eligible for free school meals. And also requires state funded schools that identify a child who is eligible to provide those meals will stop we support the desire to make sure that all those eligible for a free school meals have an opportunity to receive them, so do not wish to prevent this bill from proceeding. But I do have a couple of questions just around a couple of questions just around how the bill will achieve that.
But hopefully the sponsor may be able to address in his closing remarks so that members may consider it as the bill proceeds. I know the honourable member has extensive experience member has extensive experience within local authority, within local government and 20 local authorities have now piloted their own auto- enrolment schemes of some point. I would be interested to hear what consideration he has given in drafting this bill to the burden will be added to local authorities and whether he has any measure of the cost what it would mean for local taxpayers and what I would mean for savings for local families but also the additional income for schools through pupil premiums.
The bill would also give the powers to the Secretary of State to make provision for the definition of the term state funded school, interested in what circumstances the honourable member believes changing definition will be necessary. I will be clear here today as we were clearing government that we believe in targeting support to where it is most needed. We do believe that the state should do last but do it well, but that does mean -- include delivering sufficient support to those who need it most, particularly to children and young people.
to children and young people.
13:22
Stephen Morgan MP, The Parliamentary Under-Secretary of State for Education (Portsmouth South, Labour)
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Stephen Morgan MP, The Parliamentary Under-Secretary of State for Education (Portsmouth South, Labour)
I called the Minister Stephen Morgan.
**** Possible New Speaker ****
I thank my honourable friend the
**** Possible New Speaker ****
I thank my honourable friend the Member for Crawley for his bill and providing the opportunity to consider the importance that free, consider the importance that free, nutritious meals having breaking the link between background and achievement. I know that he is a true champion for his constituents and for Children and Families Act and for Children and Families Act across the country. I was delighted to meet with him to discuss this bill and hear how passionate he is about our opportunity mission. I also thank my honourable friend for also thank my honourable friend for Washington and Gateshead South south who I know has been champion for free school meal break -- provision in this place for a considerable amount of time and I also thank her for her leadership on the APPG.
I'm proud to serve under this mission driven government that is breaking down the barriers to opportunity for every child in every part of our country and we currently spend around £1.5 billion annually on the free lunches 40.1 million school pupils under benefits based free school meals. Alongside over 90,000 disadvantaged students in further education, around 1.3 million infants under the universal infant free school meals. At their core we consider the aim of these measures is to ensure those who needed to get the support that they are entitled to, which of course is a goal that we are supportive.
Free lunch programs provide pupils with essential nutrition, support attendance and ultimately ensure that pupils can concentrate, learn and get the most out of their education. They are essential to breaking down barriers to opportunity and tackling child, a task which is more important than ever as a result of the legacy of rising child poverty left behind by the previous government shamefully there are 700,000 more children in poverty more than in 2010 and over 4 million children are now growing up in a low income family.
That's why I am proud of a new ministerial task force working urgently to develop a child poverty strategy to address this. The child poverty task force is considering a range of levers to tackle the child poverty including key cost drivers for households such as food to develop a comprehensive strategy which will be published later this year. This is in addition to action we are already taking to deliver on our mission to breakdown barrister opportunity by rolling up free breakfast clubs in every state funded primary school providing food and childcare to children and to socialise them for the school day.
And put more money back into parents pockets on average £450 per year. Further, the overall funding for holiday activities food program which is established in every local authority area in England and delivers vital support to children and family during school holidays will again receive more than £200 million in 2025/26. We are currently facilitating the process of claiming the free meals by providing the eligibility check-in system, this is a digital portal available to local authorities that makes verifying eligibility for free lunches quick and simple.
I can update the House that this checking system is being redesigned to allow parents and schools to check eligibility independently from their local authorities. This system will make it quicker and easier to check eligibility for school meals and has the potential to further boost take-up by families meeting the eligibility criteria. Further to this, my department is aware of a range of measures that are being mentored by local authorities to boost the take-up of free lunches. We welcome locally led approaches and personally keen to learn from them.
I working directly with their communities, local authorities can overcome the barriers to registering and take action to ensure that families access the support that they are eligible for subject to these activities meeting legal requirements including those on data protection. In order to support these local efforts my department is working with the Department for science, innovation and technology to explore legal gateways that can enable better datasharing. In the meantime we will continue to engage with a range of stakeholders including families and young people themselves as I have done personally to understand the barriers for households who meet the criteria for free lunch but are not claiming them, including through working closely with local authorities to understand the approaches they have taken.
In conclusion I would like to thank again my honourable friend the Member for Crawley for bringing forward the spell on such an important matter and on a matter which we all agree on in terms of its importance. I hope it apparent from my remarks today government is supportive of the aims of this bill through the work with Department for Science, Innovation and Technology to explore legal gateways that could enable better data shows -- sharing and further consideration of improving preschool enrolment through the work of the child poverty task force.
This government is determined to breakdown the barriers to opportunity for every child and our work to simplify the enrolment processes important to achieving the same. We are confident that previously outlined actions will improve take-up for free meals alongside the local work being trialled by many local authorities across the country. For that reason, I hope he can be encouraged to withdraw his bill while we continue to explore enrolment and keep free school meals under review.
**** Possible New Speaker ****
I thank my honourable friend the
**** Possible New Speaker ****
I thank my honourable friend the Member for Crawley for his bill and providing the opportunity to consider the importance that free, consider the importance that free, nutritious meals having breaking the link between background and achievement. I know that he is a true champion for his constituents and for Children and Families Act and for Children and Families Act across the country. I was delighted to meet with him to discuss this bill and hear how passionate he is about our opportunity mission. I also thank my honourable friend for also thank my honourable friend for Washington and Gateshead South south who I know has been champion for free school meal break -- provision in this place for a considerable amount of time and I also thank her for her leadership on the APPG.
I'm proud to serve under this mission driven government that is breaking down the barriers to opportunity for every child in every part of our country and we currently spend around £1.5 billion annually on the free lunches 40.1 million school pupils under benefits based free school meals. Alongside over 90,000 disadvantaged students in further education, around 1.3 million infants under the universal infant free school meals. At their core we consider the aim of these measures is to ensure those who needed to get the support that they are entitled to, which of course is a goal that we are supportive.
Free lunch programs provide pupils with essential nutrition, support attendance and ultimately ensure that pupils can concentrate, learn and get the most out of their education. They are essential to breaking down barriers to opportunity and tackling child, a task which is more important than ever as a result of the legacy of rising child poverty left behind by the previous government shamefully there are 700,000 more children in poverty more than in 2010 and over 4 million children are now growing up in a low income family.
That's why I am proud of a new ministerial task force working urgently to develop a child poverty strategy to address this. The child poverty task force is considering a range of levers to tackle the child poverty including key cost drivers for households such as food to develop a comprehensive strategy which will be published later this year. This is in addition to action we are already taking to deliver on our mission to breakdown barrister opportunity by rolling up free breakfast clubs in every state funded primary school providing food and childcare to children and to socialise them for the school day.
And put more money back into parents pockets on average £450 per year. Further, the overall funding for holiday activities food program which is established in every local authority area in England and delivers vital support to children and family during school holidays will again receive more than £200 million in 2025/26. We are currently facilitating the process of claiming the free meals by providing the eligibility check-in system, this is a digital portal available to local authorities that makes verifying eligibility for free lunches quick and simple.
I can update the House that this checking system is being redesigned to allow parents and schools to check eligibility independently from their local authorities. This system will make it quicker and easier to check eligibility for school meals and has the potential to further boost take-up by families meeting the eligibility criteria. Further to this, my department is aware of a range of measures that are being mentored by local authorities to boost the take-up of free lunches. We welcome locally led approaches and personally keen to learn from them.
I working directly with their communities, local authorities can overcome the barriers to registering and take action to ensure that families access the support that they are eligible for subject to these activities meeting legal requirements including those on data protection. In order to support these local efforts my department is working with the Department for science, innovation and technology to explore legal gateways that can enable better datasharing. In the meantime we will continue to engage with a range of stakeholders including families and young people themselves as I have done personally to understand the barriers for households who meet the criteria for free lunch but are not claiming them, including through working closely with local authorities to understand the approaches they have taken.
In conclusion I would like to thank again my honourable friend the Member for Crawley for bringing forward the spell on such an important matter and on a matter which we all agree on in terms of its importance. I hope it apparent from my remarks today government is supportive of the aims of this bill through the work with Department for Science, Innovation and Technology to explore legal gateways that could enable better data shows -- sharing and further consideration of improving preschool enrolment through the work of the child poverty task force.
This government is determined to breakdown the barriers to opportunity for every child and our work to simplify the enrolment processes important to achieving the same. We are confident that previously outlined actions will improve take-up for free meals alongside the local work being trialled by many local authorities across the country. For that reason, I hope he can be encouraged to withdraw his bill while we continue to explore enrolment and keep free school meals under review.
13:27
Bambos Charalambous MP (Southgate and Wood Green, Labour)
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Bambos Charalambous MP (Southgate and Wood Green, Labour)
I wish to congratulate my honourable friend the Member for Crawley on his Private Members' bills on this very important topic and also his excellent speech. It's a well established fact that good nutrition is essential for children's brain development and learning. When children go to school without eating nutritious meals or at all, this has detrimental effects on the children's behaviour and educational performance. Barnardo's , nourishing the future, found that one in three school said that hunger and food unsecured -- insecurity was impacting on children's ability to learn.
Including poor concentration, tiredness and behavioural problems. I know as a school governor the existing challenges that schools face in dealing with challenging behaviour, getting children to learn. So anything that helps improve behaviour and learning is to be welcomed. Free school meals are meant to be a lifeline for low income families to ensure that the most disadvantaged children in For each day they are in school to help them concentrate learn and achieve. But according to the Child Poverty Action Group, over 900,000 children across the UK don't qualify for free school meals because of restrictive qualifying criteria, according to the Food Foundation a further 250 250,000 children who are eligible are missing out on free school meals a variety of reasons leading lack of awareness, stigma or embarrassment, over complexity of forms which I know the Minister has referred to with the new improved check-in system, or language barriers.
The fact that obtaining free school meals is not in process requiring parents or carers to apply is itself a barrier. If we want our children to flourish and thrive get the best starting life they can, then this needs to change. One of the five missions as the Minister has mentioned was to breakdown the barriers to opportunity, I believe this is one of the barriers. The solution to this is auto-enrolment for free school meals as set out in my honourable friend speech as he opened this debate.
He is not the only person to call for this change, the call has come from many quarters. In 2021, the Conservative government commissioned the Henry Dimbleby co-founder of the restaurant train Leon to present a food strategy for the Department for Environment, Food and Rural Affairs recommendation for the food strategy was to extend eligibility for free school meals, and one of the three ways to achieve that recommendation was to and I quote, in role eligible children for free school meals automatically. The rationale for that recommendation was that even eligible children after missing out currently free school meals are an opt in, parents have to know about the scheme to apply for it.
The effect of this is that according to 2013 estimate by the Department for education 11% of children entitled to free school meals do not receive to free school meals do not receive In the benefits section, it was noted that this would have benefits to those children's health, but also with their educational achievement. Following one of the free schools meals programs, primary school pupils made between four and eight weeks more progress than expected. Pupils from poorer families and they had previously done less work at school showed the most improvement.
So, it was stated then that there was clear education and health benefit that children had school meal. That come from the government's food strategy. Sadly, like many of the recommendations, auto enrolment was not implemented. More recently, the education Select Committee scrutiny of the well- being, the committee stated that the arguments for auto enrolment in free school meals for those children currently eligible are conclusive. The interests of alleviating schools and improving health and educational outcomes, the poorest children auto enrolled and must be bought in without delay.
We are lucky that in London, the Mayor of London has agreed to fund school lunches for all of the children of state schools which is making a difference to children's educational outcomes and it is a shame that this policy does It is important that children get the free school meal they deserve, and if we are to ensure that children get the best start in life, learn and thrive at school and achieve their full potential, then auto enrolling of eligible children under free school meals is the best way forward.
We need to remove the barriers to opportunity and make a huge difference to their lives. I know the government are doing many good things in education, and the announcement of the breakfast club early adopters was warmly welcomed by me and I'm sure by all colleagues across both sides of the house. I hope the government will adopt this policy because it does help alleviate child poverty, is good for children, and it is the right thing to do. I have heard what the Minister has said in terms of the task force strategy.
I will look forward to hear what he will do to challenge child poverty. Data shows to be very welcomed. And I know the government will do what they can to ensure that all legible children do get the meals that they deserve that
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will help them learn and thrive. I pay tribute to my friend from
**** Possible New Speaker ****
I pay tribute to my friend from Crawley for bringing forward this Private Member's Bill on something Private Member's Bill on something that I saw as a bureaucratic red tape nightmare in communities where you had children who were eligible
Including poor concentration, tiredness and behavioural problems. I know as a school governor the existing challenges that schools face in dealing with challenging behaviour, getting children to learn. So anything that helps improve behaviour and learning is to be welcomed. Free school meals are meant to be a lifeline for low income families to ensure that the most disadvantaged children in For each day they are in school to help them concentrate learn and achieve. But according to the Child Poverty Action Group, over 900,000 children across the UK don't qualify for free school meals because of restrictive qualifying criteria, according to the Food Foundation a further 250 250,000 children who are eligible are missing out on free school meals a variety of reasons leading lack of awareness, stigma or embarrassment, over complexity of forms which I know the Minister has referred to with the new improved check-in system, or language barriers.
The fact that obtaining free school meals is not in process requiring parents or carers to apply is itself a barrier. If we want our children to flourish and thrive get the best starting life they can, then this needs to change. One of the five missions as the Minister has mentioned was to breakdown the barriers to opportunity, I believe this is one of the barriers. The solution to this is auto-enrolment for free school meals as set out in my honourable friend speech as he opened this debate.
He is not the only person to call for this change, the call has come from many quarters. In 2021, the Conservative government commissioned the Henry Dimbleby co-founder of the restaurant train Leon to present a food strategy for the Department for Environment, Food and Rural Affairs recommendation for the food strategy was to extend eligibility for free school meals, and one of the three ways to achieve that recommendation was to and I quote, in role eligible children for free school meals automatically. The rationale for that recommendation was that even eligible children after missing out currently free school meals are an opt in, parents have to know about the scheme to apply for it.
The effect of this is that according to 2013 estimate by the Department for education 11% of children entitled to free school meals do not receive to free school meals do not receive In the benefits section, it was noted that this would have benefits to those children's health, but also with their educational achievement. Following one of the free schools meals programs, primary school pupils made between four and eight weeks more progress than expected. Pupils from poorer families and they had previously done less work at school showed the most improvement.
So, it was stated then that there was clear education and health benefit that children had school meal. That come from the government's food strategy. Sadly, like many of the recommendations, auto enrolment was not implemented. More recently, the education Select Committee scrutiny of the well- being, the committee stated that the arguments for auto enrolment in free school meals for those children currently eligible are conclusive. The interests of alleviating schools and improving health and educational outcomes, the poorest children auto enrolled and must be bought in without delay.
We are lucky that in London, the Mayor of London has agreed to fund school lunches for all of the children of state schools which is making a difference to children's educational outcomes and it is a shame that this policy does It is important that children get the free school meal they deserve, and if we are to ensure that children get the best start in life, learn and thrive at school and achieve their full potential, then auto enrolling of eligible children under free school meals is the best way forward.
We need to remove the barriers to opportunity and make a huge difference to their lives. I know the government are doing many good things in education, and the announcement of the breakfast club early adopters was warmly welcomed by me and I'm sure by all colleagues across both sides of the house. I hope the government will adopt this policy because it does help alleviate child poverty, is good for children, and it is the right thing to do. I have heard what the Minister has said in terms of the task force strategy.
I will look forward to hear what he will do to challenge child poverty. Data shows to be very welcomed. And I know the government will do what they can to ensure that all legible children do get the meals that they deserve that
**** Possible New Speaker ****
will help them learn and thrive. I pay tribute to my friend from
**** Possible New Speaker ****
I pay tribute to my friend from Crawley for bringing forward this Private Member's Bill on something Private Member's Bill on something that I saw as a bureaucratic red tape nightmare in communities where you had children who were eligible
13:34
Shaun Davies MP (Telford, Labour)
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Shaun Davies MP (Telford, Labour)
you had children who were eligible for free school meals but simply were not accessing them because form wasn't filled in, even though local authorities and local schools and local communities know exactly who those children were, that bureaucracy was getting in the way. I am pleased to hear from the Minister that he is working with the technology department to look at ways that datasharing and benefit cheques could be used to mean that more children get food. I think however this is something which has to be looked at in the round.
I just heard from a constituent this week he was taken there child out of the breakfast club because it has come up by £15 a week. Sadly, that school is not part of the 750 early adopters for breakfast clubs, they will benefit from a policy initiative as it gets rolled out, and I think it is an excellent initiative and we should call on the government to go harder and faster in implementing that particular policy. 900,000 more children in working households were living in poverty in 2023 compared to 2010 which means that 1350 children entered poverty every single week for the first 13 years of the Conservatives being in power, and in my area, absolute poverty rose from 14.9% to 18.4% between 2014 and 2023, but we also know there was a huge amount of other families who weren't in those poverty figures necessarily but were also struggling to make ends meet, and ultimately, we have to have an economy that is growing so that the poverty trap can be removed.
I also should declare an interest about the shadow minister that my wife is a primary schoolteacher in Telford and she tells me first hand about the direct contrast between the children that she teaches now to compare to the cohort of children from when she first started to teach. Children are coming in with major social issues and those have to be addressed. I also think that the government needs to take into consideration the huge amount of regional inequality and deprivation that we are seeing.
In some parts of the government, child poverty went down where in my constituency, child poverty sword, so we do need to make sure that we are engaged with local councils and combined authorities of mayors to ensure that there is a systematic approach for this.
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On that note of working with
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On that note of working with regions and nations, all the primary regions and nations, all the primary schoolchildren in Wales have been eligible for free school meals since September last year. Does my honourable friend agree with me that honourable friend agree with me that the UK government could learn these
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experiences? I know Wales very well indeed and
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I know Wales very well indeed and the way in which the Welsh government has approached child poverty and inequalities more generally something that the Westminster government could learn from and we congratulate the work of Welsh Labour in this space. I also want to welcome the previous governments household support funds and the extension of this government to this fund. I worked around the fund as a council leader with Conservative ministers. The absolute approach and ideals around that were absolutely right.
However, the one- year nature of that fund means that money is not being used to the best it could be, so again, it goes back to that point about having the cross ministerial task force group to look at this in the round, and I am looking forward to seeing that come forward. I will conclude on this point. We have heard a lot this week from the Prime Minister downwards about the need for delivery, the need for urgent action and the ability to make a difference and demonstrate change.
We can't be in a position as a Labour government that in four of five years time, we are pointing to things around bureaucracy as the reason why we haven't made a huge impact on the
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lives of children in our country. I'm grateful for the opportunity
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I'm grateful for the opportunity that this bill has brought to us to put on record the importance of discussing the scourge of child
I just heard from a constituent this week he was taken there child out of the breakfast club because it has come up by £15 a week. Sadly, that school is not part of the 750 early adopters for breakfast clubs, they will benefit from a policy initiative as it gets rolled out, and I think it is an excellent initiative and we should call on the government to go harder and faster in implementing that particular policy. 900,000 more children in working households were living in poverty in 2023 compared to 2010 which means that 1350 children entered poverty every single week for the first 13 years of the Conservatives being in power, and in my area, absolute poverty rose from 14.9% to 18.4% between 2014 and 2023, but we also know there was a huge amount of other families who weren't in those poverty figures necessarily but were also struggling to make ends meet, and ultimately, we have to have an economy that is growing so that the poverty trap can be removed.
I also should declare an interest about the shadow minister that my wife is a primary schoolteacher in Telford and she tells me first hand about the direct contrast between the children that she teaches now to compare to the cohort of children from when she first started to teach. Children are coming in with major social issues and those have to be addressed. I also think that the government needs to take into consideration the huge amount of regional inequality and deprivation that we are seeing.
In some parts of the government, child poverty went down where in my constituency, child poverty sword, so we do need to make sure that we are engaged with local councils and combined authorities of mayors to ensure that there is a systematic approach for this.
**** Possible New Speaker ****
On that note of working with
**** Possible New Speaker ****
On that note of working with regions and nations, all the primary regions and nations, all the primary schoolchildren in Wales have been eligible for free school meals since September last year. Does my honourable friend agree with me that honourable friend agree with me that the UK government could learn these
**** Possible New Speaker ****
experiences? I know Wales very well indeed and
**** Possible New Speaker ****
I know Wales very well indeed and the way in which the Welsh government has approached child poverty and inequalities more generally something that the Westminster government could learn from and we congratulate the work of Welsh Labour in this space. I also want to welcome the previous governments household support funds and the extension of this government to this fund. I worked around the fund as a council leader with Conservative ministers. The absolute approach and ideals around that were absolutely right.
However, the one- year nature of that fund means that money is not being used to the best it could be, so again, it goes back to that point about having the cross ministerial task force group to look at this in the round, and I am looking forward to seeing that come forward. I will conclude on this point. We have heard a lot this week from the Prime Minister downwards about the need for delivery, the need for urgent action and the ability to make a difference and demonstrate change.
We can't be in a position as a Labour government that in four of five years time, we are pointing to things around bureaucracy as the reason why we haven't made a huge impact on the
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lives of children in our country. I'm grateful for the opportunity
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I'm grateful for the opportunity that this bill has brought to us to put on record the importance of discussing the scourge of child
13:39
Sam Rushworth MP (Bishop Auckland, Labour)
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Sam Rushworth MP (Bishop Auckland, Labour)
discussing the scourge of child poverty in our country as it relates to children's nutrition. It simply is a fact that where the average height of five-year-olds was increasing at 2013, children are short and they were in the past, and we have the dual burden of stunting and obesity. 30% increase since 2006, and 22% increase of teenagers with type II diabetes since 2017, and all of this points to the poverty of children's diets in this country.
When we have this conversation, it is never what we can afford to do about it, but the knock-on impact for the NHS is immense. The knock-on impact of future work days for the next generation will be immense. And it is a sad reality that in a typical classroom, one third of children will be living in relative poverty. We also know that children are most likely to be living in child poverty, and from my county, what really shows that ass territory over the last 1 1/2 decades has done to our children is that there has been a 250% increase in the number of children in the care system.
The cost of which is immense to the local taxpayer and the human and social cost is immense for them, but somewhere between being in the care system and being a happy child with a healthy life our children with neglect, and that is why it is so important that the state of the schools sometimes does that work whether children are not getting in the home. I hope that will report seeing the start of some positive change, and I welcome the breakfast clubs introduced by this government which will not only make a difference to ensuring that children start the day well fed and having settled, but it will also make a cost of living difference.
I met a constituent a few months ago he shared with me it was tech costing her £400 a month to pay for her children to be looked after from the hours of 730 to the start of the school day. That was having a massive impact on her, so for her, that breakfast club is an extra £400 a month. I am grateful for that, but what has been proposed today is really quite a small thing, a modest and sensible sweep really that addresses the challenge of children not being implemented, and I'm grateful to the Minister looking at this because we cannot afford to allow a generation of children to
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grow up as they are right now. This bill aims to make a meaningful and lasting difference in
When we have this conversation, it is never what we can afford to do about it, but the knock-on impact for the NHS is immense. The knock-on impact of future work days for the next generation will be immense. And it is a sad reality that in a typical classroom, one third of children will be living in relative poverty. We also know that children are most likely to be living in child poverty, and from my county, what really shows that ass territory over the last 1 1/2 decades has done to our children is that there has been a 250% increase in the number of children in the care system.
The cost of which is immense to the local taxpayer and the human and social cost is immense for them, but somewhere between being in the care system and being a happy child with a healthy life our children with neglect, and that is why it is so important that the state of the schools sometimes does that work whether children are not getting in the home. I hope that will report seeing the start of some positive change, and I welcome the breakfast clubs introduced by this government which will not only make a difference to ensuring that children start the day well fed and having settled, but it will also make a cost of living difference.
I met a constituent a few months ago he shared with me it was tech costing her £400 a month to pay for her children to be looked after from the hours of 730 to the start of the school day. That was having a massive impact on her, so for her, that breakfast club is an extra £400 a month. I am grateful for that, but what has been proposed today is really quite a small thing, a modest and sensible sweep really that addresses the challenge of children not being implemented, and I'm grateful to the Minister looking at this because we cannot afford to allow a generation of children to
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grow up as they are right now. This bill aims to make a meaningful and lasting difference in
13:43
Leigh Ingham MP (Stafford, Labour)
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Leigh Ingham MP (Stafford, Labour)
meaningful and lasting difference in the lives of children across our country. We must come together to focus on their future, understanding that the way we invest in them today is how we shape our society tomorrow. The government has been clear in that and I welcome that, and the work already being done which is shaping a long-term strategy to bring about change. That commitment was also evident in the King's Speech where we saw the introduction of breakfast clubs which I also welcomed.
Financial support is another key element of our approach, and the household support fund, as a former councillor, I know will allow local authorities to provide targeted health to those who most need it. We must always ensure that support families is not just well- intentioned but also well delivered. This is why this bill is so important. It streams lines the process so that every eligible child is automatically registered to the health AR registered to. No famished after unnecessary navigate bureaucracy due to a lack of awareness, and at the same time, the bill respects what is incredibly important.
It is essential to realise the most effective way to reduce poverty by focusing on long- term sustainable economic growth. By fostering a strong economy, we can boost soul incomes and make sure that public services remain effective. The long-term vision must be to create an environment where families can thrive, where children can reach their full potential and why the cycle of poverty can be broken for good. While we work towards this vision, it is important to continue in preventing practical well targeted measures that can bring about immediate improvements such as this bill.
The decisions we make today will shape the society we are living tomorrow. Sorry, I have said that bit.
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If oriented this place, I worked on UK poverty for Child poverty action group Oxfam and Church action action group Oxfam and Church action on poverty and back then in 2010, it on poverty and back then in 2010, it was a cross-party consensus that we should end child poverty. Gordon Brown referred to it as his guiding Brown referred to it as his guiding mission. Should we refer to that
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mission. Should we refer to that I thank him for intervening. I agree Gordon Brown was an excellent finalist. This bill has an ongoing commitment to tackling child
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poverty. This debate should be adjourned. The question is that this debate
**** Possible New Speaker ****
The question is that this debate should be adjourned. As many are of that opinion say, "Aye". And of the contrary, "No". The ayes have it. contrary, "No". The ayes have it. The ayes have it. Debates to be
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resumed what day? Friday 11th July. Arm's-Length Bodies
Financial support is another key element of our approach, and the household support fund, as a former councillor, I know will allow local authorities to provide targeted health to those who most need it. We must always ensure that support families is not just well- intentioned but also well delivered. This is why this bill is so important. It streams lines the process so that every eligible child is automatically registered to the health AR registered to. No famished after unnecessary navigate bureaucracy due to a lack of awareness, and at the same time, the bill respects what is incredibly important.
It is essential to realise the most effective way to reduce poverty by focusing on long- term sustainable economic growth. By fostering a strong economy, we can boost soul incomes and make sure that public services remain effective. The long-term vision must be to create an environment where families can thrive, where children can reach their full potential and why the cycle of poverty can be broken for good. While we work towards this vision, it is important to continue in preventing practical well targeted measures that can bring about immediate improvements such as this bill.
The decisions we make today will shape the society we are living tomorrow. Sorry, I have said that bit.
**** Possible New Speaker ****
If oriented this place, I worked on UK poverty for Child poverty action group Oxfam and Church action action group Oxfam and Church action on poverty and back then in 2010, it on poverty and back then in 2010, it was a cross-party consensus that we should end child poverty. Gordon Brown referred to it as his guiding Brown referred to it as his guiding mission. Should we refer to that
**** Possible New Speaker ****
mission. Should we refer to that I thank him for intervening. I agree Gordon Brown was an excellent finalist. This bill has an ongoing commitment to tackling child
**** Possible New Speaker ****
poverty. This debate should be adjourned. The question is that this debate
**** Possible New Speaker ****
The question is that this debate should be adjourned. As many are of that opinion say, "Aye". And of the contrary, "No". The ayes have it. contrary, "No". The ayes have it. The ayes have it. Debates to be
**** Possible New Speaker ****
resumed what day? Friday 11th July. Arm's-Length Bodies
13:46
Private Members' Bills: Arm’s-Length Bodies (Review) Bill: Second Reading
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Arm's-Length Bodies (Accountability to Parliament) Bill Second Reading.
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Second Reading. Madame Deputy Speaker I beg to move that the Arm's-Length Bodies (Accountability to Parliament) Bill be read a second time. As you will know, timing is important in politics. And when last autumn I
Private Members' Bills: Arm’s-Length Bodies (Review) Bill: Second Reading
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Arm's-Length Bodies (Accountability to Parliament) Bill Second Reading.
**** Possible New Speaker ****
Second Reading. Madame Deputy Speaker I beg to move that the Arm's-Length Bodies (Accountability to Parliament) Bill be read a second time. As you will know, timing is important in politics. And when last autumn I
13:47
Private Members' Bills: Arm’s-Length Bodies (Review) Bill: Second Reading
Sir Christopher Chope MP (Christchurch, Conservative)
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Private Members' Bills: Arm’s-Length Bodies (Review) Bill: Second Reading
Sir Christopher Chope MP (Christchurch, Conservative)
chose today for the second reading of this bill, how could I have of this bill, how could I have predicted that arm's-length bodies, predicted that arm's-length bodies, abbreviated to ALBs, would have been mentioned four times in the Times mentioned four times in the Times lead at this very morning? Nor could I have predicted the generosity of I have predicted the generosity of the government whips in allowing, indeed facilitating, debate on this indeed facilitating, debate on this important bill.
I first introduced this bill in the 2023/24 session. But dissolution of Parliament prevented it being debated. I have to say to the house I don't the government that was in office at that time would have been very responsive. It is therefore beyond my wildest dreams that a Labour government seems to understand, at least in part, the problem that arm's-length bodies present to Parliament. And in particular to this House of Commons. And also to ministers through their ministers through their unaccountable structures.
As the Times Lead that this morning puts it, " Arm's-length bodies have often been favoured by ministers as a way of distancing themselves from contentious issues. " But the result is often education of efforts, resulting in wars between Whitehall ministers and ALBs over policy. Free of the need to answer to voters, ALBs can go rogue, as Highways England did over its promotion in the face of public opposition of so-called smart motorways. For another current topical example of this problem, one needs to look no further than the Sentencing Council.
Earlier this month, on 5 March, that independent arm's-length body issued new guidelines for the sentencing of offenders from minority groups. That issue was taken up by my right honourable friend for Newark, the shadow Secretary of State for Justice. At questions in response to a statement from the Justice Secretary. My right honourable friend challenged the Justice Secretary that the new sentencing guidelines would make a custodial sentence less likely for those "From an ethnic minority, cultural minority, and/or faith community.
" In her response, at column 286, the Justice Secretary said, " As someone from an ethnic minority background, I do not stand for any differential treatment before the law for anyone. There will never be a two tier sentencing approach under my watch. " It became apparent, however, that the Justice Secretary did not have the control that she thought she had over the activities of the Sentencing Council. And that these new guidelines, due to be implemented from first of April, remained unaltered and unaffected by what both the Secretary of State for Justice and her Shadow had said to this house.
I understand from today's newspapers that yesterday there was a meeting between the Justice Secretary and the chairman of the Sentencing Council, Lord Justice William Davies. I would have expected in the same press release to have seen that Lord Justice William Davies have now conceded that that Justice Secretary, who I think speaks to everybody in this house, think we should not have a two-tiered justice system, I would have thought he would have said he accepted that he got it wrong and the new guidelines would be withdrawn before 1 April.
That does not, however, seem to have happened yet. And we now know that those guidelines were the subject of quite critical comments when they went out to consultation including from the magistrates Association, who describe them as they get out of jail free card. So why have we set up a system whereby the Sentencing Council is able to dictate this type of policy, overwriting the will of ministers, and of elected Members of
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Parliament? My right honourable friend for Newark... I thank the member for giving
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I thank the member for giving way. And I respect the point that he way. And I respect the point that he is making about the Sentencing Council. But would he answer the question given this issue has been question given this issue has been around for the last few years, the honourable member has said the guidelines were out for guidelines were out for consultation, why he thinks the
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previous government was unable to take any action on this? I can't speak for the previous government because I wasn't a member of the government, although I was obviously in the house. My understanding is that this has only become a live issue within recent weeks and months. And it is the present government that has been involved in discussions hide the scenes. I'm not blaming the Justice Secretary because I think what happened is that her officials perhaps misreading what he had to say or perhaps not understanding the need to consult her they seem to have been at meetings with the Sentencing Council.
My understanding, the consultation process came to a conclusion after this government came into office. But I think what we must all agree on which we need to try and find a way through this. The member for Newark has today produced a bill which is on the order paper. It is the Sentencing Council (Powers of Secretary of State) Bill. It would enable this house and the Minister to take back control from the Sentencing Council over issues relating to a sentencing policy and guidance.
And I think I would find it amazing if the government sought to block progress on that bill today. Indeed I think that everything to be said for that bill going through all stages of the house in one day because it is essentially an emergency measure. And it response to the fact that so far the Sentencing Council does not seem to have responded positively to the representations of the Justice Secretary. But the Sentencing Council is not unique in being able to ignore the wishes of government ministers and Parliament.
Most arm's-length bodies have a similar status to the Sentencing Council. And they are in three different categories, executive agencies, Non-Departmental Public Body's, and non-ministerial departments. And they have slightly varying relationships with this house and with government. But there are far too many of them. How many arm's- length bodies are there? On 4 July last year, I was told by a Cabinet office minister that there were 307 arm's-length bodies. And 135 of those had an annual operating expenditure in excess of £5 million in 2023/24.
Although the Cabinet Office minister ducked my other question as to how many there are now, we know that the government has, since coming to office, removed one quango and created 27 new ones. So although the Prime Minister has taken some decisive action in relation to one, there are a heck of a lot of others which I hope will come under his scrutiny. My bill seeks to ensure that the most significant quangos are accountable to Parliament.
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Given the Prime Minister's announcement yesterday, would he announcement yesterday, would he welcome the announcement that the largest of these organisations is to
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largest of these organisations is to be moved within ministerial oversight and department website? I'm just coming onto that. I'm
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I'm just coming onto that. I'm absolutely delighted. I'm not ambivalent about that. I think it is really good news. I'm going to give some examples of how frustrating it has been in my own constituency to has been in my own constituency to try and engage with an organisation called NHS Dorset. It used to be called the integrated care board. And how difficult it has been to get any timely responses from that organisation. I am delighted that the Prime Minister obviously agrees with the objective of this bill.
Whereas this bill inevitably had to sort of tread carefully around the subject matter, the best way of getting Parliamentary Counsel from the activities of arm's-length bodies is to abolish those bodies
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completely. Which is what the government has the Prime Minister announced yesterday. I thank the honourable gentleman
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I thank the honourable gentleman for giving way. I'm very much aware of the fact that he has been a of the fact that he has been a member of this chamber for much longer than I have and certainly much longer than many of my colleagues have, given that many of colleagues have, given that many of us were elected for the first time last July. Will he recall that between 1997 and 2010, the Labour between 1997 and 2010, the Labour government cut the number of quangos in this country by 39.8%? That shows what a Labour government does in government.
Wait until the end of
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the five years and see how many we have By then, I'm sure he will be delighted by the number. I am more interested actually in
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I am more interested actually in looking at the numbers of people in the civil service. And I'm sorry to the civil service. And I'm sorry to say that there was a low point during the Blair years, but I am during the Blair years, but I am sorry to report that under the sorry to report that under the previous Conservative government and in the time that this government has been in office, the number of civil servants has continued to increase servants has continued to increase exponentially.
I think we are talking about between 100,000 and 200,000 more civil servants than at the time of the Brexit referendum. So I think the size of the state, the size of the government, the size of the civil service are important issues. And they are fundamental to this. My bill is focused on trying to ensure that those officials who are paid handsomely by the taxpayer are more accountable than they have been to this house and indeed also to the government.
The Prime Minister said yesterday that these quangos and regulators end up blocking what the government wants to do. And that is obviously up to that secretary. In a democracy we elect a government and expect the government to take action on our
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behalf. Could he help enlighten me, maybe
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Could he help enlighten me, maybe confusion I have got the wedding of his bill. What the government is talking about is bringing more of these agencies back under executive control, so the executive, elected by the British people, can drive their performance. What is Bill their performance. What is Bill actually does is give direct Parliament you control which will, in many cases, move it out from in many cases, move it out from executive control and executive oversight, for example in prisons oversight, for example in prisons under the MOJ.
And to Parliament. Won't it make some of it harder rather than easier?
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I don't think my bill would make any of that harder. What I am saying is, if the government wishes to abolish these arm's-length bodies, or some of them, and create a more direct relationship between the direct relationship between the activities of those bodies, when they are under direct government control and this house, then I control and this house, then I welcome that. I have already made that clear. The government has that clear. The government has already shown that it is intent on increasing the numbers of arm's- increasing the numbers of arm's- I come onto egregious example of giving substantial new powers to an arm's-length body, namely Natural England as set out in the infrastructure bill which was published earlier that week, but I will come onto that in due course.
But what is important is that these arm's-length bodies are not able to go on a frolic of their own. So, my bill is an attempt to remedy that accountability gap. In the most direct way of doing that is by abolishing the arm's-length bodies altogether. And currently, the government is legislating to abolish one arm's-length body, and that is the Institute for apprenticeships and technical education transfer functions bill, and I was chairing the Committee stage of that yesterday, so I won't comment on the merits or otherwise of that bill.
But the proposals in that bill are dwarfed by the announcement of the abolition of NHS England, and I welcome that decision, and as I said earlier, I particularly have a constituency confirm about the way that NHS England is out in NHS Dorset, it lacks responsiveness to members of. And to give you a topical example from this particular week, it is still going on, and that is the continuing healthcare department in NHS Dorset has failed over the last many months to be able to sort out an issue relating to a quadriplegic who is one of my constituents who is now moved in to a different residential care home and his social worker is from the NHS healthcare team, as we speak today, he is threatened with losing his mobility vehicle this very weekend because of the inability of the NHS to be able to deal with the Department for Work and Pensions to sort that out.
This very week, the Constituents mother writes to me and what do I do, I tried to contact the what do I do, I tried to contact the NHS in Dorset,, I sent them in email, phone messages with the social worker, and also with the organisation, and my secretary is busy phoning today to try and get some response. There is no response forthcoming from NHS Dorset. It is unacceptable in my view. It is a small example of the problem which will be properly addressed by bringing NHS England and direct control of the government because it means that I would be able to put down questions about this.
I would try to get an Urgent Question of the Minister. It is that direct accountability which Lord Lansley when he was the Secretary of State was trying to avoid because it was an embarrassment to the Conservative governments and the coalition governments that they could be asked questions by MPs of a subject that I have raised, and yet what more important role as their then to be able to drive through those bureaucratic blocks and get delivery of what our constituents are
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expecting. It is a really interesting case
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It is a really interesting case of this constituent. Sometimes, when we get rid of a quango, it is ready we get rid of a quango, it is ready what you wish for. One of the things I did, I asked as the Parliamentary I did, I asked as the Parliamentary Union. During the bonfire, much lamented former bodies was the lamented former bodies was the Independent living fund who provided support for some of the most complex support for some of the most complex cases like your constituent and were much more easily working body.
In a cost saving measure, that was transfer and into local government and local government and much less effective at administering it, so what I would say is be careful what you wish for because they are
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quangos. I had a gentleman's cautionary
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I had a gentleman's cautionary tale and I am not suggesting that anything is going to be a panacea, anything is going to be a panacea, and that is why my bill is quite a tentative step to try to introduce
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more accountability. I agree entirely with the points
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I agree entirely with the points we are making. As I recall from the coalition days, one of the reasons coalition days, one of the reasons for the reform was to make the NHS more independent of government which has clearly failed, and my personal review, it should be within the department. We will be able to question ministers on the issue, so the idea that we should make them independent of their political masters is something we need to
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overturn. Although the expression
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Although the expression independent sound seductive, it independent sound seductive, it often means the representatives in often means the representatives in question. But I have to make this illustration of the concerns that I illustration of the concerns that I have got. I have got a lesson have got. I have got a lesson thanking me. I thanked her in November and she wrote back in the end of January about an issue relating to dermatology services in Dorset, and I wrote back to her and said what is being done to address this issue because you haven't answered that in my letter.
Now, it has taken them until earlier this month on 5 March further queries following up on that, and this is the answer. Concern over the unacceptable long waiting list for services. What is being done to address this service? That is the question that I raised back in November. The answer is as part of a commissioning, dermatology is one of the services that is being focused on. The aim of the programme is to recover services to the 18 week standard target or maintaining sustainability.
As part of this, we are reviewing how services can best achieve this. That is over four months, no suggestion as to when the review started, what will happen and all the rest of it. I take that as an example of the Member of an example of the Member of Parliament being fobbed off for having the temerity to raise an important issue on behalf of his constituents, and I could go on with lots of other examples from NHS Dorset but I am not going to do that, but what I will do is see if I can encourage through this debate the government to go further than just abolishing NHS England because I have had a lot of dealings with what is called the NHS business services authority which is another arm's-length body controlled by the Department for health and social care.
But actually, essentially, it is a law unto itself. I have been in dealings with the NHS this year on a number of different subjects, but particularly on the subject of the access and treatment of people who suffered vaccine damage and have applied for vaccine damage payments. The NHS is responsible for organising and running that scheme, and yet progress in dealing with applications is desperately slow. As of last November, they had over 17,000 claims relating to covert vaccines, but of those, over 7000 were awaiting a resolution, and some had been waiting for over 18 months to be resolved.
And as of 27 February this year, what happens once a claim has been rejected, then the claimant has the opportunity to go for mandatory reversal application before they are able to give access to a tribunal, so dissatisfied claimants go for the mandatory reversal but again, the NHS BSA is able to hold up that process, and as 27 February this year, there have been 1657 rejected claims which had been subject to mandatory reversal, 600 of those are outstanding, and 81 of these mandatory reversal applications have been outstanding for over a year.
This is intolerable because what happens is if it takes you over a year to get your claim dismissed, you then get a mandatory reversal, you then go to a tribunal, and after three years, your right to be able to litigate on the subject is taken over by the periods, so this is an example of what happens when government departments start taking over and being thoroughly incompetent.
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If the gentleman is so concerned about committees England, why did 12 about committees England, why did 12 years ago yesterday on 13 March 2012, why did he vote for the health and social care bill?
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and social care bill? Well, I expect that was one of my less rebellious periods at that less rebellious periods at that stage. But the honourable gentleman is right to chide me because I think
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it was a big mistake. Unless there is such a fundamental issue for the member, why should we pay many attention whatsoever to what he is saying to
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us today? I'm not saying that anyone should pay attention to what I'm saying. All I'm putting forward is a proposition that these arm's-length proposition that these arm's-length bodies of which there are far too many, that they should be brought to many, that they should be brought to account more than they are at the moment. And I've just given my example of the NHS business services authority, but another example is a Natural England, and one of the means by which arm's-length bodies are meant to be accountable to Parliament is through the publication of annual reports, with accounts, and if one looks the situation in relation to Natural England, that organisation has not produced an annual report of accounts for the year ending 31st of March for the year ending 31st of March 2024.
The last accounts they produced were in December 23 for the financial year ending 31st of March 2023. Again, this is unacceptable. The government guidance is that these arm's-length bodies should produce their report within three months of the end of the financial
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year. I thank the member for giving way. In light of what is being said, would he support labours planning and infrastructure Bill which takes and infrastructure Bill which takes away Natural England powers to delay more stock of vital infrastructure more stock of vital infrastructure including energy and rail infrastructure and 1.5 million homes
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that we need in this country. We move on to the planning and
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We move on to the planning and infrastructure Bill and in
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particular, Before he moves on to the topic
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Before he moves on to the topic of Natural England, in my constituency, we have a huge problem around the Whinney Hill take of around the Whinney Hill take of which we are both heavily involved in, but I would ask the gentleman in, but I would ask the gentleman that in order to tackle the sting cannot suffer the challenges around cannot suffer the challenges around that, the limitation of us finding an alternative has been because of the elected officials that need to the elected officials that need to make the planning for alternative waste stations and the environmental agency had greater teeth, they might have been able to push that and find a better solution, so is it not about having the right powers in place and not moving the quangos place and not moving the quangos
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Madam Deputy Speaker, in terms of the Environment Agency as an arm's- the Environment Agency as an arm's- length body, my view is that the Environment Agency is found wanting Environment Agency is found wanting in many respects. Not least that it in many respects. Not least that it argues that it has that lack of resources to introduce necessary prosecutions and enforcement of the regulations which is meant to be in charge of. Just to illustrate this charge of.
Just to illustrate this point relating to Natural England actually, at the end of the last Parliament, I arranged with the then Minister of DEFRA to have a meeting in his office with officials from Natural England and the Environment Agency to discuss the state of a particular valley, the river, the nitrogen and phosphate problems, and the issue of the valley footpath because that crosses the River Avon in my constituency. As a result of neglect, that path is no longer viable.
So I set up this meeting with the Minister, or he set it up in his department, and the first time I went along to the department with him, and he was sitting there with his private secretary, we were meant to have officials from Natural England the Environment Agency, I don't know whether they were working from home but they were meant to be coming in online, on Zoom, and nothing happened. There was a message at the last minute saying they could not attend.
So I said to the Minister that he should get heavy with them because this was intolerable. It was another month or six weeks later before we actually had an in-person meeting with them. I wish I could say to the honourable Lady that as a result of that the issues have been resolved but they have not. I have a meeting with Natural England on site on 1 April in the valley in my constituency. So all is not well with these arm's- length bodies.
I think there are different solutions to resolving, depending on the specific nature.
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The former Paymaster General, the right honourable before Salisbury right honourable before Salisbury said ALBs are closely aligned but distinct responses. One distinct responses. One classification of ALBs, this is the former Paymaster General, they are former Paymaster General, they are each responsible to Parliament for each responsible to Parliament for their use of public funds. Isn't that contrary to what the honourable gentleman seems to be telling us? Who is right, or gentlemen or the
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Who is right, or gentlemen or the former Paymaster General? It is the difference between the words and the reality. Strictly speaking, for reasons I was coming onto, they have two produce an annual report and accounts. Those annual reports and accounts go to what is described as a sponsoring department. In most cases the sponsoring department lays those accounts before this house. But as I have said, in a situation like for example Natural England, they have produced, we don't know what has been going on since 31 March since 31 March 2023.
They are accountable but not in what I would describe as a meaningful sense, so that we are actually able to ask specific
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questions. On the point of arm's-length bodies and the accountability to bodies and the accountability to Parliament, would my noble friend agree with me that it would be useful to have a mechanism to bring useful to have a mechanism to bring them to Parliament to hold them to account, not just with annual accounts but also if there is gross accounts but also if there is gross negligence in a department or at arm's-length body, to clearly those that deal with medical or delicate that deal with medical or delicate matters, that there is some issue that needs to be brought to the forefront, that we could have them forefront, that we could have them come to Parliament for that Parliamentary Counsel ability directly? Rather than such an arm's-length body, although said in theory that they are accountable to us, there is no evidence that shows
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that that is the case. I am grateful to my honourable
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I am grateful to my honourable friend. She takes me back to the content of my bill. My bill seeks to content of my bill. My bill seeks to achieve exactly what she requests achieve exactly what she requests because because one of my bill says House of Commons approval of House of Commons approval of relevant documents. Within a period of 40 days starting on the day on which the relevant document is laid which the relevant document is laid before the House of Commons by, or on behalf of, a qualifying body, a Minister of the Crown must move a motion that the House of Commons approves that relevant document.
So that means that we in the house will be able to decide whether or not we approve that document. If the House of Commons does not approve a motion under subsection 1 relevant motion will be referred to the Committee of Public Accounts. It seems to be the best body we have in this house to deal with this sort of situation would be the Committee of Public Accounts. So that would be an automatic reference to the Committee of Public Accounts, if members of this House decided that they were dissatisfied with the performance of the relevant arm's-length body.
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I thank the honourable gentleman for giving way. Has he had any discussions with the Chairman of the Public Accounts Commission team to assess how much time the Public assess how much time the Public Accounts Committee, if their time would be taken up going through the would be taken up going through the accounts of potentially 150 of these accounts of potentially 150 of these quangos that we say are directly responsible to Parliament?
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responsible to Parliament? The quangos are not directly responsible to Parliament which is why I have brought forward this bill. I'm not going to give way any more. I will make this comment, your gentlemen seems to be intent on trying to find a reason for not taking action in this area, and to stop progress. May I suggest that he might effectively pursue an alternative career in the civil service? Because that is exactly the sort of role that he would be well suited to it seems to me.
Having said that, I do think it is important, because the planning and in such a bill was published this week, it gives extensive and revised powers to Natural England which as I said has not yet produced it report last year. Clauses 48 to 78 of the Planning and Infrastructure Bill, instead of abolishing Natural England, which following the Prime Minister as abolition of NHS England might be the right approach, so these response and these can be taken on directly either Department for Environment Food and Rural Affairs.
But what has happened in this bill is that the unelected body Natural England is being given responsibility for environmental delivery plans, the administration and control of the nature Restoration levy, and a whole lot of other response ability to as well. Which I think would be better suited to the government itself, so there is more direct accountability. I can see why the government is frustrated at the delays of Natural England, and I have experienced that in my constituency.
Where there was a ridiculous attempt by somebody to try and build a new indoor, outdoor surfing lately but in the open air. Only 3 miles from the coast but wanted to build this new infrastructure, and Natural England sat on the responsibility of advising on this. And it refused to take action. I kept on saying to the Planning Inspectorate, what can we do about it? The answer was nothing really. We had to wait until Natural England had got round to deciding what it was going to do, if anything.
That added months and months, a development site in the middle of Christchurch, a former police station site, which as a result of Natural England faffing about over phosphates, costs of developing the site have increased by over £3 million, with significant delays, two is more, because of delays, two is more, because of Natural England. So instead of giving more power to Natural England, I think the government needs to take back these powers into the Department rather than, as set out in the planning of the structure built, giving even more power to this unelected and scarcely accountable quango.
I will give way.
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I thank him. He is talking about
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I thank him. He is talking about Natural England and NHS England. It obviously only applies in England. Is he aware that in another part of Is he aware that in another part of the UK, in Scotland, we have seen an absolute proliferation of quangos under the SNP? We now have more quangos in Scotland than there are members of the Scottish parliament. Does he, like me, look forward to the day when the SNP are no longer running the Scottish Government, and running the Scottish Government, and a Labour administration has promised to crack down on these things?
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Although I was educated at the University in Scotland, I'm not going to get drawn into Scottish going to get drawn into Scottish politics. I think there is a lot to be said for having a United Kingdom approach on all these issues. One of approach on all these issues. One of the problems has been that we probably devolved in some respects too much power to Scottish too much power to Scottish Government which more properly should be dealt with by the United should be dealt with by the United Kingdom Parliament.
We hurt in the first bill we were discussing today clauses two and three of that bill clauses two and three of that bill are specifically limited to England and Wales. In Scotland, although it is an important bill about research into rare cancers, that the bill could not apply to Scotland. I think that is a bigger problem but we won't get into that now. Because I am trying to confine my remarks to several hundred arm's-length bodies, and I'm not going to have time to go through any more examples.
But what through any more examples. But what I would say in summing up is that I think it is a conversion by the government. Suddenly they have seen the light. They realise that actually they need to take back control. I won't, not at the moment. I'm just going to illustrate that proposition with an anecdote. And that is, when I was a minister in the Department of the environment, and we had those tall 18 story power blocks in Martial Street, and I was privileged to be a junior minister and there was a day when Nick Ridley, who was my secretary of state, he was passionately in favour of the freedom of people to smoke if they so wished.
There was one day he arrived in the tower block and there was a big notice up in the lifts saying " No smoking in this lift. " It caused him to say, in a stage whisper, " Can someone remind me who is in charge of this department? " And Nick used to say the notice was quickly removed. I think what he did when he was Secretary of State and included me in the responsibility of cleaning what was a mega tango, which was the property services agency, and responsible for massive delays and added costs in the building of the British library for example.
What he imbued in me was a feeling that if you are a minister, you were in charge. And one day the permanent secretary responsible for the property services agency went behind my back and went to him and said basically that I was responsible for a significant decline in the morale of the people working for the property services agency. And could the Secretary of State intervene. The Secretary of State sent to the gentleman in question, " Chris is in charge of the property services agency.
If you wish to discuss anything with him, then I'm sure his door is was open. " And he reported that back to me and from that moment onwards, the relationship changed, so that the Minister was back in charge, and the civil servants recognised that they were in some alternate and unaccountable role. I hope that is exactly what will happen now with NHS England. I hope it will happen to a lot of other arm's-length bodies as a result of this
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conversion by the government. Order. Order. Second reading what
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Order. Order. Second reading what
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Order. Order. Second reading what
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Order. Order. Second reading what Public health control of disease act Amendment Bill, second reading.
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act Amendment Bill, second reading. Objection taken. Second reading,
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what day? 28th of March. Developing countries Bill, second
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reading. Objection taken, second reading
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what day? 11th of July. Home and suspension Bill, second
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reading. Objection taken, second reading,
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what day? 16th of May. Pension special rule for end-of-
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life Bill, second reading. Second reading, what day? Friday,
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25 April. Treatment of terminal illness Bill second reading. Heritage public houses Bill, second reading.
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Objection taken. What day? Friday, 24 April.
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Friday, 24 April. Statutory Instruments Amendment Bill second reading.
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Bill second reading. Objection taken, second reading what day? 28th of March.
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what day? 28th of March. Dangerous Dogs Act, second reading. Objection taken, second reading
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Objection taken, second reading what day? 28th of March.
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Domestic energy value-added tax bill second reading.
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Objection taken, what day? 28th of March.
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BBC licence fee non-payment decriminalisation for over 75 bills
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second reading. Objection taken, what day? 28th
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of March. Quantitative fees and prohibition
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Bill .$$NEWLINE The member in charge has given instruction that he wishes to defer his bill to Friday, wishes to defer his bill to Friday, 28 March. I will not move second reading of the bill today. We will
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move onto the next bill set down for today. Microchips Bill, second reading.
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Microchips Bill, second reading. Objection taken, second reading what day? Friday 28th of March.
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what day? Friday 28th of March. COVID vaccine damage bill. Objection taken, second reading
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Objection taken, second reading what day? Friday, 28 March.
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Anonymity of suspects bill. Objection taken, second reading
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what day? 28th of March. Children's clothing value-added
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tax bill second reading. Objection taken, second reading
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what day? 28th of March. Highways act Amendment Bill,
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second reading. Objection taken, second reading
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what day? 28th of March. British Broadcasting Corporation privatisation bill, second reading.
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privatisation bill, second reading. Objection taken, second reading what day? 28th of March.
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what day? 28th of March. Illegal immigration offences Bill, second reading. Objection taken, second reading
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what day? 28th of March. Vaccine damage payments act
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review bill second reading. Objection taken, second reading
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what day? 28th of March. NHS alternative treatment bill
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second reading. Objection taken, second reading
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what day? 28th of March. Terminal illness relief of pain
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Bill, second reading. Objection taken, second reading
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what day? 28th of March. COVID vaccine damage bill second reading.
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what day? 28th of March. Marriage prohibitive relationships bill.
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relationships bill. Objection movement, second
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reading what day? 28th of March. Mobile homes that 1983 amendment bill second reading.
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bill second reading. Objection taken, second reading
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what day? 28th of March. Sentencing Council powers of Secretary of State Bill second
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reading. Objection taken, second reading what day? Friday, 28 March.
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what day? Friday, 28 March. I beg to move this house to now adjourn. If people wish to remove
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If people wish to remove themselves from the chamber, they should do so very swiftly and very should do so very swiftly and very quietly. We move on to the adjournment debates. The question is this house do now adjourn.
I first introduced this bill in the 2023/24 session. But dissolution of Parliament prevented it being debated. I have to say to the house I don't the government that was in office at that time would have been very responsive. It is therefore beyond my wildest dreams that a Labour government seems to understand, at least in part, the problem that arm's-length bodies present to Parliament. And in particular to this House of Commons. And also to ministers through their ministers through their unaccountable structures.
As the Times Lead that this morning puts it, " Arm's-length bodies have often been favoured by ministers as a way of distancing themselves from contentious issues. " But the result is often education of efforts, resulting in wars between Whitehall ministers and ALBs over policy. Free of the need to answer to voters, ALBs can go rogue, as Highways England did over its promotion in the face of public opposition of so-called smart motorways. For another current topical example of this problem, one needs to look no further than the Sentencing Council.
Earlier this month, on 5 March, that independent arm's-length body issued new guidelines for the sentencing of offenders from minority groups. That issue was taken up by my right honourable friend for Newark, the shadow Secretary of State for Justice. At questions in response to a statement from the Justice Secretary. My right honourable friend challenged the Justice Secretary that the new sentencing guidelines would make a custodial sentence less likely for those "From an ethnic minority, cultural minority, and/or faith community.
" In her response, at column 286, the Justice Secretary said, " As someone from an ethnic minority background, I do not stand for any differential treatment before the law for anyone. There will never be a two tier sentencing approach under my watch. " It became apparent, however, that the Justice Secretary did not have the control that she thought she had over the activities of the Sentencing Council. And that these new guidelines, due to be implemented from first of April, remained unaltered and unaffected by what both the Secretary of State for Justice and her Shadow had said to this house.
I understand from today's newspapers that yesterday there was a meeting between the Justice Secretary and the chairman of the Sentencing Council, Lord Justice William Davies. I would have expected in the same press release to have seen that Lord Justice William Davies have now conceded that that Justice Secretary, who I think speaks to everybody in this house, think we should not have a two-tiered justice system, I would have thought he would have said he accepted that he got it wrong and the new guidelines would be withdrawn before 1 April.
That does not, however, seem to have happened yet. And we now know that those guidelines were the subject of quite critical comments when they went out to consultation including from the magistrates Association, who describe them as they get out of jail free card. So why have we set up a system whereby the Sentencing Council is able to dictate this type of policy, overwriting the will of ministers, and of elected Members of
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Parliament? My right honourable friend for Newark... I thank the member for giving
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I thank the member for giving way. And I respect the point that he way. And I respect the point that he is making about the Sentencing Council. But would he answer the question given this issue has been question given this issue has been around for the last few years, the honourable member has said the guidelines were out for guidelines were out for consultation, why he thinks the
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previous government was unable to take any action on this? I can't speak for the previous government because I wasn't a member of the government, although I was obviously in the house. My understanding is that this has only become a live issue within recent weeks and months. And it is the present government that has been involved in discussions hide the scenes. I'm not blaming the Justice Secretary because I think what happened is that her officials perhaps misreading what he had to say or perhaps not understanding the need to consult her they seem to have been at meetings with the Sentencing Council.
My understanding, the consultation process came to a conclusion after this government came into office. But I think what we must all agree on which we need to try and find a way through this. The member for Newark has today produced a bill which is on the order paper. It is the Sentencing Council (Powers of Secretary of State) Bill. It would enable this house and the Minister to take back control from the Sentencing Council over issues relating to a sentencing policy and guidance.
And I think I would find it amazing if the government sought to block progress on that bill today. Indeed I think that everything to be said for that bill going through all stages of the house in one day because it is essentially an emergency measure. And it response to the fact that so far the Sentencing Council does not seem to have responded positively to the representations of the Justice Secretary. But the Sentencing Council is not unique in being able to ignore the wishes of government ministers and Parliament.
Most arm's-length bodies have a similar status to the Sentencing Council. And they are in three different categories, executive agencies, Non-Departmental Public Body's, and non-ministerial departments. And they have slightly varying relationships with this house and with government. But there are far too many of them. How many arm's- length bodies are there? On 4 July last year, I was told by a Cabinet office minister that there were 307 arm's-length bodies. And 135 of those had an annual operating expenditure in excess of £5 million in 2023/24.
Although the Cabinet Office minister ducked my other question as to how many there are now, we know that the government has, since coming to office, removed one quango and created 27 new ones. So although the Prime Minister has taken some decisive action in relation to one, there are a heck of a lot of others which I hope will come under his scrutiny. My bill seeks to ensure that the most significant quangos are accountable to Parliament.
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Given the Prime Minister's announcement yesterday, would he announcement yesterday, would he welcome the announcement that the largest of these organisations is to
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largest of these organisations is to be moved within ministerial oversight and department website? I'm just coming onto that. I'm
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I'm just coming onto that. I'm absolutely delighted. I'm not ambivalent about that. I think it is really good news. I'm going to give some examples of how frustrating it has been in my own constituency to has been in my own constituency to try and engage with an organisation called NHS Dorset. It used to be called the integrated care board. And how difficult it has been to get any timely responses from that organisation. I am delighted that the Prime Minister obviously agrees with the objective of this bill.
Whereas this bill inevitably had to sort of tread carefully around the subject matter, the best way of getting Parliamentary Counsel from the activities of arm's-length bodies is to abolish those bodies
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completely. Which is what the government has the Prime Minister announced yesterday. I thank the honourable gentleman
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I thank the honourable gentleman for giving way. I'm very much aware of the fact that he has been a of the fact that he has been a member of this chamber for much longer than I have and certainly much longer than many of my colleagues have, given that many of colleagues have, given that many of us were elected for the first time last July. Will he recall that between 1997 and 2010, the Labour between 1997 and 2010, the Labour government cut the number of quangos in this country by 39.8%? That shows what a Labour government does in government.
Wait until the end of
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the five years and see how many we have By then, I'm sure he will be delighted by the number. I am more interested actually in
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I am more interested actually in looking at the numbers of people in the civil service. And I'm sorry to the civil service. And I'm sorry to say that there was a low point during the Blair years, but I am during the Blair years, but I am sorry to report that under the sorry to report that under the previous Conservative government and in the time that this government has been in office, the number of civil servants has continued to increase servants has continued to increase exponentially.
I think we are talking about between 100,000 and 200,000 more civil servants than at the time of the Brexit referendum. So I think the size of the state, the size of the government, the size of the civil service are important issues. And they are fundamental to this. My bill is focused on trying to ensure that those officials who are paid handsomely by the taxpayer are more accountable than they have been to this house and indeed also to the government.
The Prime Minister said yesterday that these quangos and regulators end up blocking what the government wants to do. And that is obviously up to that secretary. In a democracy we elect a government and expect the government to take action on our
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behalf. Could he help enlighten me, maybe
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Could he help enlighten me, maybe confusion I have got the wedding of his bill. What the government is talking about is bringing more of these agencies back under executive control, so the executive, elected by the British people, can drive their performance. What is Bill their performance. What is Bill actually does is give direct Parliament you control which will, in many cases, move it out from in many cases, move it out from executive control and executive oversight, for example in prisons oversight, for example in prisons under the MOJ.
And to Parliament. Won't it make some of it harder rather than easier?
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I don't think my bill would make any of that harder. What I am saying is, if the government wishes to abolish these arm's-length bodies, or some of them, and create a more direct relationship between the direct relationship between the activities of those bodies, when they are under direct government control and this house, then I control and this house, then I welcome that. I have already made that clear. The government has that clear. The government has already shown that it is intent on increasing the numbers of arm's- increasing the numbers of arm's- I come onto egregious example of giving substantial new powers to an arm's-length body, namely Natural England as set out in the infrastructure bill which was published earlier that week, but I will come onto that in due course.
But what is important is that these arm's-length bodies are not able to go on a frolic of their own. So, my bill is an attempt to remedy that accountability gap. In the most direct way of doing that is by abolishing the arm's-length bodies altogether. And currently, the government is legislating to abolish one arm's-length body, and that is the Institute for apprenticeships and technical education transfer functions bill, and I was chairing the Committee stage of that yesterday, so I won't comment on the merits or otherwise of that bill.
But the proposals in that bill are dwarfed by the announcement of the abolition of NHS England, and I welcome that decision, and as I said earlier, I particularly have a constituency confirm about the way that NHS England is out in NHS Dorset, it lacks responsiveness to members of. And to give you a topical example from this particular week, it is still going on, and that is the continuing healthcare department in NHS Dorset has failed over the last many months to be able to sort out an issue relating to a quadriplegic who is one of my constituents who is now moved in to a different residential care home and his social worker is from the NHS healthcare team, as we speak today, he is threatened with losing his mobility vehicle this very weekend because of the inability of the NHS to be able to deal with the Department for Work and Pensions to sort that out.
This very week, the Constituents mother writes to me and what do I do, I tried to contact the what do I do, I tried to contact the NHS in Dorset,, I sent them in email, phone messages with the social worker, and also with the organisation, and my secretary is busy phoning today to try and get some response. There is no response forthcoming from NHS Dorset. It is unacceptable in my view. It is a small example of the problem which will be properly addressed by bringing NHS England and direct control of the government because it means that I would be able to put down questions about this.
I would try to get an Urgent Question of the Minister. It is that direct accountability which Lord Lansley when he was the Secretary of State was trying to avoid because it was an embarrassment to the Conservative governments and the coalition governments that they could be asked questions by MPs of a subject that I have raised, and yet what more important role as their then to be able to drive through those bureaucratic blocks and get delivery of what our constituents are
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expecting. It is a really interesting case
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It is a really interesting case of this constituent. Sometimes, when we get rid of a quango, it is ready we get rid of a quango, it is ready what you wish for. One of the things I did, I asked as the Parliamentary I did, I asked as the Parliamentary Union. During the bonfire, much lamented former bodies was the lamented former bodies was the Independent living fund who provided support for some of the most complex support for some of the most complex cases like your constituent and were much more easily working body.
In a cost saving measure, that was transfer and into local government and local government and much less effective at administering it, so what I would say is be careful what you wish for because they are
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quangos. I had a gentleman's cautionary
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I had a gentleman's cautionary tale and I am not suggesting that anything is going to be a panacea, anything is going to be a panacea, and that is why my bill is quite a tentative step to try to introduce
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more accountability. I agree entirely with the points
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I agree entirely with the points we are making. As I recall from the coalition days, one of the reasons coalition days, one of the reasons for the reform was to make the NHS more independent of government which has clearly failed, and my personal review, it should be within the department. We will be able to question ministers on the issue, so the idea that we should make them independent of their political masters is something we need to
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overturn. Although the expression
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Although the expression independent sound seductive, it independent sound seductive, it often means the representatives in often means the representatives in question. But I have to make this illustration of the concerns that I illustration of the concerns that I have got. I have got a lesson have got. I have got a lesson thanking me. I thanked her in November and she wrote back in the end of January about an issue relating to dermatology services in Dorset, and I wrote back to her and said what is being done to address this issue because you haven't answered that in my letter.
Now, it has taken them until earlier this month on 5 March further queries following up on that, and this is the answer. Concern over the unacceptable long waiting list for services. What is being done to address this service? That is the question that I raised back in November. The answer is as part of a commissioning, dermatology is one of the services that is being focused on. The aim of the programme is to recover services to the 18 week standard target or maintaining sustainability.
As part of this, we are reviewing how services can best achieve this. That is over four months, no suggestion as to when the review started, what will happen and all the rest of it. I take that as an example of the Member of an example of the Member of Parliament being fobbed off for having the temerity to raise an important issue on behalf of his constituents, and I could go on with lots of other examples from NHS Dorset but I am not going to do that, but what I will do is see if I can encourage through this debate the government to go further than just abolishing NHS England because I have had a lot of dealings with what is called the NHS business services authority which is another arm's-length body controlled by the Department for health and social care.
But actually, essentially, it is a law unto itself. I have been in dealings with the NHS this year on a number of different subjects, but particularly on the subject of the access and treatment of people who suffered vaccine damage and have applied for vaccine damage payments. The NHS is responsible for organising and running that scheme, and yet progress in dealing with applications is desperately slow. As of last November, they had over 17,000 claims relating to covert vaccines, but of those, over 7000 were awaiting a resolution, and some had been waiting for over 18 months to be resolved.
And as of 27 February this year, what happens once a claim has been rejected, then the claimant has the opportunity to go for mandatory reversal application before they are able to give access to a tribunal, so dissatisfied claimants go for the mandatory reversal but again, the NHS BSA is able to hold up that process, and as 27 February this year, there have been 1657 rejected claims which had been subject to mandatory reversal, 600 of those are outstanding, and 81 of these mandatory reversal applications have been outstanding for over a year.
This is intolerable because what happens is if it takes you over a year to get your claim dismissed, you then get a mandatory reversal, you then go to a tribunal, and after three years, your right to be able to litigate on the subject is taken over by the periods, so this is an example of what happens when government departments start taking over and being thoroughly incompetent.
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If the gentleman is so concerned about committees England, why did 12 about committees England, why did 12 years ago yesterday on 13 March 2012, why did he vote for the health and social care bill?
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and social care bill? Well, I expect that was one of my less rebellious periods at that less rebellious periods at that stage. But the honourable gentleman is right to chide me because I think
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it was a big mistake. Unless there is such a fundamental issue for the member, why should we pay many attention whatsoever to what he is saying to
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us today? I'm not saying that anyone should pay attention to what I'm saying. All I'm putting forward is a proposition that these arm's-length proposition that these arm's-length bodies of which there are far too many, that they should be brought to many, that they should be brought to account more than they are at the moment. And I've just given my example of the NHS business services authority, but another example is a Natural England, and one of the means by which arm's-length bodies are meant to be accountable to Parliament is through the publication of annual reports, with accounts, and if one looks the situation in relation to Natural England, that organisation has not produced an annual report of accounts for the year ending 31st of March for the year ending 31st of March 2024.
The last accounts they produced were in December 23 for the financial year ending 31st of March 2023. Again, this is unacceptable. The government guidance is that these arm's-length bodies should produce their report within three months of the end of the financial
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year. I thank the member for giving way. In light of what is being said, would he support labours planning and infrastructure Bill which takes and infrastructure Bill which takes away Natural England powers to delay more stock of vital infrastructure more stock of vital infrastructure including energy and rail infrastructure and 1.5 million homes
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that we need in this country. We move on to the planning and
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We move on to the planning and infrastructure Bill and in
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particular, Before he moves on to the topic
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Before he moves on to the topic of Natural England, in my constituency, we have a huge problem around the Whinney Hill take of around the Whinney Hill take of which we are both heavily involved in, but I would ask the gentleman in, but I would ask the gentleman that in order to tackle the sting cannot suffer the challenges around cannot suffer the challenges around that, the limitation of us finding an alternative has been because of the elected officials that need to the elected officials that need to make the planning for alternative waste stations and the environmental agency had greater teeth, they might have been able to push that and find a better solution, so is it not about having the right powers in place and not moving the quangos place and not moving the quangos
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Madam Deputy Speaker, in terms of the Environment Agency as an arm's- the Environment Agency as an arm's- length body, my view is that the Environment Agency is found wanting Environment Agency is found wanting in many respects. Not least that it in many respects. Not least that it argues that it has that lack of resources to introduce necessary prosecutions and enforcement of the regulations which is meant to be in charge of. Just to illustrate this charge of.
Just to illustrate this point relating to Natural England actually, at the end of the last Parliament, I arranged with the then Minister of DEFRA to have a meeting in his office with officials from Natural England and the Environment Agency to discuss the state of a particular valley, the river, the nitrogen and phosphate problems, and the issue of the valley footpath because that crosses the River Avon in my constituency. As a result of neglect, that path is no longer viable.
So I set up this meeting with the Minister, or he set it up in his department, and the first time I went along to the department with him, and he was sitting there with his private secretary, we were meant to have officials from Natural England the Environment Agency, I don't know whether they were working from home but they were meant to be coming in online, on Zoom, and nothing happened. There was a message at the last minute saying they could not attend.
So I said to the Minister that he should get heavy with them because this was intolerable. It was another month or six weeks later before we actually had an in-person meeting with them. I wish I could say to the honourable Lady that as a result of that the issues have been resolved but they have not. I have a meeting with Natural England on site on 1 April in the valley in my constituency. So all is not well with these arm's- length bodies.
I think there are different solutions to resolving, depending on the specific nature.
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The former Paymaster General, the right honourable before Salisbury right honourable before Salisbury said ALBs are closely aligned but distinct responses. One distinct responses. One classification of ALBs, this is the former Paymaster General, they are former Paymaster General, they are each responsible to Parliament for each responsible to Parliament for their use of public funds. Isn't that contrary to what the honourable gentleman seems to be telling us? Who is right, or gentlemen or the
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Who is right, or gentlemen or the former Paymaster General? It is the difference between the words and the reality. Strictly speaking, for reasons I was coming onto, they have two produce an annual report and accounts. Those annual reports and accounts go to what is described as a sponsoring department. In most cases the sponsoring department lays those accounts before this house. But as I have said, in a situation like for example Natural England, they have produced, we don't know what has been going on since 31 March since 31 March 2023.
They are accountable but not in what I would describe as a meaningful sense, so that we are actually able to ask specific
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questions. On the point of arm's-length bodies and the accountability to bodies and the accountability to Parliament, would my noble friend agree with me that it would be useful to have a mechanism to bring useful to have a mechanism to bring them to Parliament to hold them to account, not just with annual accounts but also if there is gross accounts but also if there is gross negligence in a department or at arm's-length body, to clearly those that deal with medical or delicate that deal with medical or delicate matters, that there is some issue that needs to be brought to the forefront, that we could have them forefront, that we could have them come to Parliament for that Parliamentary Counsel ability directly? Rather than such an arm's-length body, although said in theory that they are accountable to us, there is no evidence that shows
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that that is the case. I am grateful to my honourable
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I am grateful to my honourable friend. She takes me back to the content of my bill. My bill seeks to content of my bill. My bill seeks to achieve exactly what she requests achieve exactly what she requests because because one of my bill says House of Commons approval of House of Commons approval of relevant documents. Within a period of 40 days starting on the day on which the relevant document is laid which the relevant document is laid before the House of Commons by, or on behalf of, a qualifying body, a Minister of the Crown must move a motion that the House of Commons approves that relevant document.
So that means that we in the house will be able to decide whether or not we approve that document. If the House of Commons does not approve a motion under subsection 1 relevant motion will be referred to the Committee of Public Accounts. It seems to be the best body we have in this house to deal with this sort of situation would be the Committee of Public Accounts. So that would be an automatic reference to the Committee of Public Accounts, if members of this House decided that they were dissatisfied with the performance of the relevant arm's-length body.
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I thank the honourable gentleman for giving way. Has he had any discussions with the Chairman of the Public Accounts Commission team to assess how much time the Public assess how much time the Public Accounts Committee, if their time would be taken up going through the would be taken up going through the accounts of potentially 150 of these accounts of potentially 150 of these quangos that we say are directly responsible to Parliament?
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responsible to Parliament? The quangos are not directly responsible to Parliament which is why I have brought forward this bill. I'm not going to give way any more. I will make this comment, your gentlemen seems to be intent on trying to find a reason for not taking action in this area, and to stop progress. May I suggest that he might effectively pursue an alternative career in the civil service? Because that is exactly the sort of role that he would be well suited to it seems to me.
Having said that, I do think it is important, because the planning and in such a bill was published this week, it gives extensive and revised powers to Natural England which as I said has not yet produced it report last year. Clauses 48 to 78 of the Planning and Infrastructure Bill, instead of abolishing Natural England, which following the Prime Minister as abolition of NHS England might be the right approach, so these response and these can be taken on directly either Department for Environment Food and Rural Affairs.
But what has happened in this bill is that the unelected body Natural England is being given responsibility for environmental delivery plans, the administration and control of the nature Restoration levy, and a whole lot of other response ability to as well. Which I think would be better suited to the government itself, so there is more direct accountability. I can see why the government is frustrated at the delays of Natural England, and I have experienced that in my constituency.
Where there was a ridiculous attempt by somebody to try and build a new indoor, outdoor surfing lately but in the open air. Only 3 miles from the coast but wanted to build this new infrastructure, and Natural England sat on the responsibility of advising on this. And it refused to take action. I kept on saying to the Planning Inspectorate, what can we do about it? The answer was nothing really. We had to wait until Natural England had got round to deciding what it was going to do, if anything.
That added months and months, a development site in the middle of Christchurch, a former police station site, which as a result of Natural England faffing about over phosphates, costs of developing the site have increased by over £3 million, with significant delays, two is more, because of delays, two is more, because of Natural England. So instead of giving more power to Natural England, I think the government needs to take back these powers into the Department rather than, as set out in the planning of the structure built, giving even more power to this unelected and scarcely accountable quango.
I will give way.
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I thank him. He is talking about
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I thank him. He is talking about Natural England and NHS England. It obviously only applies in England. Is he aware that in another part of Is he aware that in another part of the UK, in Scotland, we have seen an absolute proliferation of quangos under the SNP? We now have more quangos in Scotland than there are members of the Scottish parliament. Does he, like me, look forward to the day when the SNP are no longer running the Scottish Government, and running the Scottish Government, and a Labour administration has promised to crack down on these things?
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Although I was educated at the University in Scotland, I'm not going to get drawn into Scottish going to get drawn into Scottish politics. I think there is a lot to be said for having a United Kingdom approach on all these issues. One of approach on all these issues. One of the problems has been that we probably devolved in some respects too much power to Scottish too much power to Scottish Government which more properly should be dealt with by the United should be dealt with by the United Kingdom Parliament.
We hurt in the first bill we were discussing today clauses two and three of that bill clauses two and three of that bill are specifically limited to England and Wales. In Scotland, although it is an important bill about research into rare cancers, that the bill could not apply to Scotland. I think that is a bigger problem but we won't get into that now. Because I am trying to confine my remarks to several hundred arm's-length bodies, and I'm not going to have time to go through any more examples.
But what through any more examples. But what I would say in summing up is that I think it is a conversion by the government. Suddenly they have seen the light. They realise that actually they need to take back control. I won't, not at the moment. I'm just going to illustrate that proposition with an anecdote. And that is, when I was a minister in the Department of the environment, and we had those tall 18 story power blocks in Martial Street, and I was privileged to be a junior minister and there was a day when Nick Ridley, who was my secretary of state, he was passionately in favour of the freedom of people to smoke if they so wished.
There was one day he arrived in the tower block and there was a big notice up in the lifts saying " No smoking in this lift. " It caused him to say, in a stage whisper, " Can someone remind me who is in charge of this department? " And Nick used to say the notice was quickly removed. I think what he did when he was Secretary of State and included me in the responsibility of cleaning what was a mega tango, which was the property services agency, and responsible for massive delays and added costs in the building of the British library for example.
What he imbued in me was a feeling that if you are a minister, you were in charge. And one day the permanent secretary responsible for the property services agency went behind my back and went to him and said basically that I was responsible for a significant decline in the morale of the people working for the property services agency. And could the Secretary of State intervene. The Secretary of State sent to the gentleman in question, " Chris is in charge of the property services agency.
If you wish to discuss anything with him, then I'm sure his door is was open. " And he reported that back to me and from that moment onwards, the relationship changed, so that the Minister was back in charge, and the civil servants recognised that they were in some alternate and unaccountable role. I hope that is exactly what will happen now with NHS England. I hope it will happen to a lot of other arm's-length bodies as a result of this
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conversion by the government. Order. Order. Second reading what
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Order. Order. Second reading what
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Order. Order. Second reading what
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Order. Order. Second reading what Public health control of disease act Amendment Bill, second reading.
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act Amendment Bill, second reading. Objection taken. Second reading,
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what day? 28th of March. Developing countries Bill, second
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reading. Objection taken, second reading
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what day? 11th of July. Home and suspension Bill, second
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reading. Objection taken, second reading,
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what day? 16th of May. Pension special rule for end-of-
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life Bill, second reading. Second reading, what day? Friday,
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25 April. Treatment of terminal illness Bill second reading. Heritage public houses Bill, second reading.
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Objection taken. What day? Friday, 24 April.
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Friday, 24 April. Statutory Instruments Amendment Bill second reading.
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Bill second reading. Objection taken, second reading what day? 28th of March.
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what day? 28th of March. Dangerous Dogs Act, second reading. Objection taken, second reading
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Objection taken, second reading what day? 28th of March.
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Domestic energy value-added tax bill second reading.
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Objection taken, what day? 28th of March.
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BBC licence fee non-payment decriminalisation for over 75 bills
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second reading. Objection taken, what day? 28th
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of March. Quantitative fees and prohibition
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Bill .$$NEWLINE The member in charge has given instruction that he wishes to defer his bill to Friday, wishes to defer his bill to Friday, 28 March. I will not move second reading of the bill today. We will
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move onto the next bill set down for today. Microchips Bill, second reading.
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Microchips Bill, second reading. Objection taken, second reading what day? Friday 28th of March.
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what day? Friday 28th of March. COVID vaccine damage bill. Objection taken, second reading
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Objection taken, second reading what day? Friday, 28 March.
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Anonymity of suspects bill. Objection taken, second reading
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what day? 28th of March. Children's clothing value-added
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tax bill second reading. Objection taken, second reading
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what day? 28th of March. Highways act Amendment Bill,
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second reading. Objection taken, second reading
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what day? 28th of March. British Broadcasting Corporation privatisation bill, second reading.
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privatisation bill, second reading. Objection taken, second reading what day? 28th of March.
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what day? 28th of March. Illegal immigration offences Bill, second reading. Objection taken, second reading
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what day? 28th of March. Vaccine damage payments act
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review bill second reading. Objection taken, second reading
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what day? 28th of March. NHS alternative treatment bill
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second reading. Objection taken, second reading
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what day? 28th of March. Terminal illness relief of pain
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Bill, second reading. Objection taken, second reading
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what day? 28th of March. COVID vaccine damage bill second reading.
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what day? 28th of March. Marriage prohibitive relationships bill.
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relationships bill. Objection movement, second
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reading what day? 28th of March. Mobile homes that 1983 amendment bill second reading.
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bill second reading. Objection taken, second reading
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what day? 28th of March. Sentencing Council powers of Secretary of State Bill second
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reading. Objection taken, second reading what day? Friday, 28 March.
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what day? Friday, 28 March. I beg to move this house to now adjourn. If people wish to remove
**** Possible New Speaker ****
If people wish to remove themselves from the chamber, they should do so very swiftly and very should do so very swiftly and very quietly. We move on to the adjournment debates. The question is this house do now adjourn.
14:36
Adjournment: Impact of inflation on HS2 mitigation projects
Greg Smith MP (Mid Buckinghamshire, Conservative)
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Adjournment: Impact of inflation on HS2 mitigation projects
Greg Smith MP (Mid Buckinghamshire, Conservative)
I am grateful for the opportunity to raise this important issue in the house this afternoon. I want to focus on the impact that inflation has had on different institutions abilities to deliver the community projects and mitigations HS2 previously agreed to in mid Bucks. These cases are many in number but I will illustrate the scale of the problem with particular attention to 2 pressing concerns. Noise mitigation measures for St Marys Church in Wendover and the provision of a new ground and facilities for Wendover Cricket club.
HS2 has been deeply controversial in my constituency across mid Bucks and the wider county. I made no bones about my absolute and total opposition to HS2. This is well documented. Many have suffered greatly with the impact on local amenities and infrastructure. That is not to mention the hideous cost
**** Possible New Speaker ****
to the taxpayer. On that point, my honourable
**** Possible New Speaker ****
On that point, my honourable friend raises the infrastructure but friend raises the infrastructure but I think one of the huge impacts that goes unrecognised is the impact on goes unrecognised is the impact on roads and road services, not only are we in can share in the are we in can share in the floodplain but we have huge amounts of use which are compact and by the HS2 traffic, and with my friend agree with me that this is not being
**** Possible New Speaker ****
mitigated in anyway? I thank her for her intervention.
**** Possible New Speaker ****
I thank her for her intervention. We see it day in and day out, the impact of thousands of movements, impact of thousands of movements, heavy vehicles, churning up our local road infrastructure. Roads local road infrastructure. Roads that originated as cart tracks and don't have deep substructures that don't have deep substructures that get turned up very easily and the impact that these big infrastructure projects have on roads is considerable. And I talked about that many times in this house before and there has been a great deal of correspondence with ministers on this, and it is something that no matter what the infrastructure project, we have to get better as a country at understanding those impacts before the green light is given and properly mitigated.
East- west rail already have done to fix that. They have resurfaced a number of roads around the claims and areas that they have, and it is now incumbent on HS2 to do the same. But from the outset, affected organisations have been forced to negotiate their survival with HS2 Ltd often at great cost to them and Ltd often at great cost to them and then to the taxpayer. But when a place, a town or neighbourhood or community is so brutally impacted by the infrastructure, I would argue that there is a moral duty on the promoter which in this case is the state to mitigate, compensate and treat those fairly.
The rising cost of inflation was approved in 2017 and has meant that commitments previously made by the state and HS2 Ltd, Parliamentary the hybrid act process are now at risk of being delayed, watered-down, or even abandoned altogether, and that is simply unacceptable. One of the most egregious examples of such broken commitments in the case of St Mary's Church in Wendover. This historic and much loved place of worship has served the community for centuries, providing not only spiritual support but acting as a hub for local activities and events, particularly music concerts.
HS2 Ltd had recognised that the noise impact from construction in the debate from passing high-speed trains would significantly affect the church. As such, they had agreed for their mitigation measures with sound insulation. Yet due to rising costs and the pressures of inflation since that particular mitigation was agreed in 2016, we are now being told that these measures may not be delivered in full if at all. After conversations between the church and the project began eight years ago, the undertaking assurance originally given by the Department for transport has not been honoured, and through no fault of the church, despite being contractually obliged to do so.
As such, with inflation, the original 250,000 pan cost referred to in the UNA will now result in less than 50% of the work being affordable compared to what it would have done at the time of the UNA. This was confirmed after I intervened to restart discussions which had effectively stalled because of the fundamental unwillingness on HS2 Ltd's part to engage meaningfully on what is a key community concern, an attitude which is relevant across mid Bucks. That is completely unacceptable.
A commitment was made and the government must ensure that HS2 Ltd honours it. The congregation of St Mary's Church should not have to suffer excessive noise pollution because of a failure to manage costs effectively, nor the basic fact of construction inflation over so many years. This is a matter of fairness, of upholding trust, and ensuring that historic institutions like St Marys are protected for future generations. My second example of a further broken promise relates to Wendover cricket club. As I said earlier, I could go much further afield, but Wendover as a town is particularly affected.
This local club has been an integral part of the Wendover community for over a century, offering young people and adults the opportunity to engage in sports, stay active, and participate in community life. It is one of the few clubs that offers the wide- ranging age groups for teams that compete across the whole country. It is not just part of Wendover's identity but part of Bucks's identity, and by evicting them from their grounds, HS2 is driving a wedge through everyone and everything here.
Due to HS2's construction, the club's existing facilities were rendered completely unusable and completely severed into, and HS2 Ltd originally pledged to provide a new ground and upgraded facilities to compensate for the disruption to the tune of £200,000 to another one of these undertaking and insurance agreements. That one being dated 2017. However, the club has now been informed that you to escalating costs, these new facilities may not go to what was agreed upon, or may not be delivered at all because of HS2 reluctance to pay the 2025 or 2026 cost.
The cricket club has entered into a groundworks contract that includes approximately £90,000 worth of self-funded items already. They are acting in good faith. They are also considering a pavilion that includes approximately £180,000 of items sell funding on the basis of receiving the UNA resource and their own reserves. Given that the UNA state that the Secretary of State for transport well, subject to Royal assent, require the nominated undertakings to nominate the sum of £200,000 for the reasonable costs of Wendover cricket club relocating its Wendover cricket club relocating its grounds.
These were wholly the concerns of HS2, so at a minimum, the nominated undertaking in this case on the spirit of the UNA to the cricket club with an inflation- adjusted figure. The impact of this on local cricket and engagement cannot be overstated. We are trying to provide a service for the local community. They contribute to the health of the entire community. It would be a devastating blow to my constituents. I understand the significance that we face as a country, the war in Ukraine, supply changes and other global economic factors have all contributed to rising costs, however these factors must not be used as an excuse to renege on commitments made to communities impacted by HS2.
HS2 Ltd and the government must ensure that funds are allocated properly to deliver on the promises that were made to the people of Wendover and beyond in my mid Bucks constituency. If savings need to be found, and they do, they should not come at the expense of community projects that expense of community projects that We should be looking at where efficiencies can be made within the wider infrastructure project to make sure local communities are not shortchanged.
I urge the Minister to take the following immediate actions. Confirm HS2 Ltd action to deliver and ensure no backtracking takes place. Secondly guaranteeing that the cricket club will receive the new ground and facilities that were pledged with no reduction in quality of delivery due to cost- cutting measures. Thirdly, ensure full transparency from HS2 Ltd regarding how inflationary pressures are impacted on community projects and explore fundamental mechanisms to safeguard those commitments. Fourthly, hold HS2 Ltd accountable for ensuring that agreed mitigation methods are ring fenced and not subject to arbitrary cost saving exercises in disproportionately impacted communities.
My constituents did not ask for HS2. But they have had to endure years of disruption and environmental damage that people in our communities. The very least they deserve is for HS2 Ltd to honour the commitments it has made to mitigate the very worst excesses of its impact. It is a matter of integrity, fairness, doing the right thing by the people of my constituency. I look forward to the Minister's response, and you hopefully working together to ensure that these promises are kept.
**** Possible New Speaker ****
I called the Minister. Thank you Madame Deputy Speaker. Can I the audible member for Can I the audible member for securing this debate today. And standing up so resolutely for some standing up so resolutely for some of that civil society institutions in his constituency and speaking so in his constituency and speaking so eloquently about them. Higher inflation, the pandemic, protest action, planning, appeals, judicial action, planning, appeals, judicial reviews, activity that had a significant impact on the cost of phase 1 of HS2, the government has been clear that we are committed to getting a grip on those spiralling costs.
As part of this work the Transport Secretary published its first HS2 report to Parliament under the new government setting out some of the immediate actions and interventions that we will be taking to regain control of HS2 costs and bring the project back on track. Ministers have tasked the new CEO of HS2 Ltd in producing an action plan to reset the program and deliver the remaining work as cost effectively as possible, with reinstated ministerial oversight for the project through ministerial task force to ensure transparency and accountability.
And my department will update Parliament as this important work of resetting the program and reinstating the program and reinstating the oversight progress, as the oversight oversight progress, as the oversight progresses. I will give way.
HS2 has been deeply controversial in my constituency across mid Bucks and the wider county. I made no bones about my absolute and total opposition to HS2. This is well documented. Many have suffered greatly with the impact on local amenities and infrastructure. That is not to mention the hideous cost
**** Possible New Speaker ****
to the taxpayer. On that point, my honourable
**** Possible New Speaker ****
On that point, my honourable friend raises the infrastructure but friend raises the infrastructure but I think one of the huge impacts that goes unrecognised is the impact on goes unrecognised is the impact on roads and road services, not only are we in can share in the are we in can share in the floodplain but we have huge amounts of use which are compact and by the HS2 traffic, and with my friend agree with me that this is not being
**** Possible New Speaker ****
mitigated in anyway? I thank her for her intervention.
**** Possible New Speaker ****
I thank her for her intervention. We see it day in and day out, the impact of thousands of movements, impact of thousands of movements, heavy vehicles, churning up our local road infrastructure. Roads local road infrastructure. Roads that originated as cart tracks and don't have deep substructures that don't have deep substructures that get turned up very easily and the impact that these big infrastructure projects have on roads is considerable. And I talked about that many times in this house before and there has been a great deal of correspondence with ministers on this, and it is something that no matter what the infrastructure project, we have to get better as a country at understanding those impacts before the green light is given and properly mitigated.
East- west rail already have done to fix that. They have resurfaced a number of roads around the claims and areas that they have, and it is now incumbent on HS2 to do the same. But from the outset, affected organisations have been forced to negotiate their survival with HS2 Ltd often at great cost to them and Ltd often at great cost to them and then to the taxpayer. But when a place, a town or neighbourhood or community is so brutally impacted by the infrastructure, I would argue that there is a moral duty on the promoter which in this case is the state to mitigate, compensate and treat those fairly.
The rising cost of inflation was approved in 2017 and has meant that commitments previously made by the state and HS2 Ltd, Parliamentary the hybrid act process are now at risk of being delayed, watered-down, or even abandoned altogether, and that is simply unacceptable. One of the most egregious examples of such broken commitments in the case of St Mary's Church in Wendover. This historic and much loved place of worship has served the community for centuries, providing not only spiritual support but acting as a hub for local activities and events, particularly music concerts.
HS2 Ltd had recognised that the noise impact from construction in the debate from passing high-speed trains would significantly affect the church. As such, they had agreed for their mitigation measures with sound insulation. Yet due to rising costs and the pressures of inflation since that particular mitigation was agreed in 2016, we are now being told that these measures may not be delivered in full if at all. After conversations between the church and the project began eight years ago, the undertaking assurance originally given by the Department for transport has not been honoured, and through no fault of the church, despite being contractually obliged to do so.
As such, with inflation, the original 250,000 pan cost referred to in the UNA will now result in less than 50% of the work being affordable compared to what it would have done at the time of the UNA. This was confirmed after I intervened to restart discussions which had effectively stalled because of the fundamental unwillingness on HS2 Ltd's part to engage meaningfully on what is a key community concern, an attitude which is relevant across mid Bucks. That is completely unacceptable.
A commitment was made and the government must ensure that HS2 Ltd honours it. The congregation of St Mary's Church should not have to suffer excessive noise pollution because of a failure to manage costs effectively, nor the basic fact of construction inflation over so many years. This is a matter of fairness, of upholding trust, and ensuring that historic institutions like St Marys are protected for future generations. My second example of a further broken promise relates to Wendover cricket club. As I said earlier, I could go much further afield, but Wendover as a town is particularly affected.
This local club has been an integral part of the Wendover community for over a century, offering young people and adults the opportunity to engage in sports, stay active, and participate in community life. It is one of the few clubs that offers the wide- ranging age groups for teams that compete across the whole country. It is not just part of Wendover's identity but part of Bucks's identity, and by evicting them from their grounds, HS2 is driving a wedge through everyone and everything here.
Due to HS2's construction, the club's existing facilities were rendered completely unusable and completely severed into, and HS2 Ltd originally pledged to provide a new ground and upgraded facilities to compensate for the disruption to the tune of £200,000 to another one of these undertaking and insurance agreements. That one being dated 2017. However, the club has now been informed that you to escalating costs, these new facilities may not go to what was agreed upon, or may not be delivered at all because of HS2 reluctance to pay the 2025 or 2026 cost.
The cricket club has entered into a groundworks contract that includes approximately £90,000 worth of self-funded items already. They are acting in good faith. They are also considering a pavilion that includes approximately £180,000 of items sell funding on the basis of receiving the UNA resource and their own reserves. Given that the UNA state that the Secretary of State for transport well, subject to Royal assent, require the nominated undertakings to nominate the sum of £200,000 for the reasonable costs of Wendover cricket club relocating its Wendover cricket club relocating its grounds.
These were wholly the concerns of HS2, so at a minimum, the nominated undertaking in this case on the spirit of the UNA to the cricket club with an inflation- adjusted figure. The impact of this on local cricket and engagement cannot be overstated. We are trying to provide a service for the local community. They contribute to the health of the entire community. It would be a devastating blow to my constituents. I understand the significance that we face as a country, the war in Ukraine, supply changes and other global economic factors have all contributed to rising costs, however these factors must not be used as an excuse to renege on commitments made to communities impacted by HS2.
HS2 Ltd and the government must ensure that funds are allocated properly to deliver on the promises that were made to the people of Wendover and beyond in my mid Bucks constituency. If savings need to be found, and they do, they should not come at the expense of community projects that expense of community projects that We should be looking at where efficiencies can be made within the wider infrastructure project to make sure local communities are not shortchanged.
I urge the Minister to take the following immediate actions. Confirm HS2 Ltd action to deliver and ensure no backtracking takes place. Secondly guaranteeing that the cricket club will receive the new ground and facilities that were pledged with no reduction in quality of delivery due to cost- cutting measures. Thirdly, ensure full transparency from HS2 Ltd regarding how inflationary pressures are impacted on community projects and explore fundamental mechanisms to safeguard those commitments. Fourthly, hold HS2 Ltd accountable for ensuring that agreed mitigation methods are ring fenced and not subject to arbitrary cost saving exercises in disproportionately impacted communities.
My constituents did not ask for HS2. But they have had to endure years of disruption and environmental damage that people in our communities. The very least they deserve is for HS2 Ltd to honour the commitments it has made to mitigate the very worst excesses of its impact. It is a matter of integrity, fairness, doing the right thing by the people of my constituency. I look forward to the Minister's response, and you hopefully working together to ensure that these promises are kept.
**** Possible New Speaker ****
I called the Minister. Thank you Madame Deputy Speaker. Can I the audible member for Can I the audible member for securing this debate today. And standing up so resolutely for some standing up so resolutely for some of that civil society institutions in his constituency and speaking so in his constituency and speaking so eloquently about them. Higher inflation, the pandemic, protest action, planning, appeals, judicial action, planning, appeals, judicial reviews, activity that had a significant impact on the cost of phase 1 of HS2, the government has been clear that we are committed to getting a grip on those spiralling costs.
As part of this work the Transport Secretary published its first HS2 report to Parliament under the new government setting out some of the immediate actions and interventions that we will be taking to regain control of HS2 costs and bring the project back on track. Ministers have tasked the new CEO of HS2 Ltd in producing an action plan to reset the program and deliver the remaining work as cost effectively as possible, with reinstated ministerial oversight for the project through ministerial task force to ensure transparency and accountability.
And my department will update Parliament as this important work of resetting the program and reinstating the program and reinstating the oversight progress, as the oversight oversight progress, as the oversight progresses. I will give way.
14:49
Mike Kane MP, Parliamentary Under-Secretary (Department for Transport) (Wythenshawe and Sale East, Labour)
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Mike Kane MP, Parliamentary Under-Secretary (Department for Transport) (Wythenshawe and Sale East, Labour)
May I thank the Minister. Just to say on behalf of two of the Buckinghamshire MPs, we are also standing in solidarity in a spot of scrapping HS2 altogether so it is never too late for real cost saving minister to scrap the whole thing.
**** Possible New Speaker ****
It was the former prime minister
**** Possible New Speaker ****
It was the former prime minister who came to Manchester during party conference to scrap it from going through Manchester. I have never known quite the political insults known quite the political insults that one could ever give. It was supposed to balance up our country, supposed to balance up our country, and yet we have reduced capacity and it impacts on Northern Powerhouse Rail. The effects of this project either in the constituency as passionately extolled by honourable Member, or for those who don't get it have all been impacted by the way the project has been handled over a number of years.
But I want to get back to the point that your gentleman was here to talk about. Following discussions with St Mary's in 2016 during the passage of the high-speed rail West Midlands to London acts, the church was given an assurance to improve its noise insulation. The assurance provided clearly for a contribution up to maximum of £250,000 with no provision for inflation at that time. There are many other HS2 assurances on the public register which include commitments to fund particular works and activities.
Some of these provide explicitly index linking, but others do not. The one given to Saint Mary's does not. It is worth noting that the House of Lords committee which was set up to hear from petitioners against the bill considered the Saint Mary's case at the time and took the unusual step in 2016 of reporting that the £260,000 offer was generous. Furthermore since the assurances were given I'm pleased to report that HS2 has made other improvements to its planned for noise mitigation in the locality of the church.
This will reduce the amount of noise reaching the church in the first place. Taking into account both contexts, it is not considered appropriate to increase the amount of public funding offered to the church or to increase any other financial mitigations that were fixed and not indexed at the time that they were agreed. There is no evidence that the sums are no longer sufficient. We have inherited a difficult situation, as the audible member said, on HS2. The government priority is to get a grip
**** Possible New Speaker ****
of the costs. On that point, I'm grateful to the Minister for his comments. Will the Minister for his comments. Will he accept a point in principle that this wasn't an arbitrary amount of money offered to the church as a top money offered to the church as a top up for church funds. It was very specifically for noise mitigation specifically for noise mitigation purposes. In 2025, if the money promised in 2016 simply can't deliver that, then it is fair to have similar projects.
It is a problem that the Department for transport is the responsible body and finds itself in.
**** Possible New Speaker ****
He is right but HS2 have clearly already put in some noise already put in some noise mitigation. I understand that the agreement has not yet been reached on mitigation works to be undertaken on mitigation works to be undertaken in the church. Because of this, according to the terms of the according to the terms of the assurance, the funds cannot yet be released. So I'm encouraging the honourable Member, and the parties of HS2 and the church to focus their efforts on agreeing the works that efforts on agreeing the works that can be carried out, the timeline for them to begin.
So the available funding can be released, and so it can stretch as far as humanly possible. So I do encourage the parties to get together and begin that negotiation. I am a social member of a cricket club, my playing days are long behind me. And I know the value not just in terms of the sport but in terms of the social cohesion and solidarity, the glue that cricket clubs and other sports and social clubs provide. He speaks eloquently about his constituency.
I can say that that deal asked for an uplift for the cover of inflation. I understand the quest is currently with HS2 who are looking into the circumstances of the club, and will respond in due course. I'm hoping very shortly that he will get an answer. If he doesn't, please contact me and I will let the rail minister no. I think HS2 hit a date would have heard the impassioned plea that this historic and successful club does not miss out.
In the intervention, which was raised around roads and road conditions was I'm aware that HS2 Ltd has been working closely to improve the way such road repairs are managed. I know they have already allocated considerable resources to dealing with this particular problem. Road repairs are measured against the baseline road condition levels agreed at the start of the project butter either paid to councils in the current prices or undertaken by HS2 Ltd contractors. So are not affected by the issue of inflation.
I'm pleased to hear from the honourable member himself that he is being far more successful with his West Rail and the road repairs in his constituency, as he stated in the chamber. I will conclude again by congratulating the honourable member for securing this debate. Let me reiterate that transport is an essential part of the government's mission to rebuild Britain. We will continue to work with honourable members, local leaders, on making sure we get the delivery of infra structure projects right. As I have said, I welcome this debate, as it is vital we continue to discuss
**** Possible New Speaker ****
transport projects openly and transparently. The question is that this house
**** Possible New Speaker ****
The question is that this house do now adjourn. As many are of that opinion say, "Aye". The ayes have
**** Possible New Speaker ****
It was the former prime minister
**** Possible New Speaker ****
It was the former prime minister who came to Manchester during party conference to scrap it from going through Manchester. I have never known quite the political insults known quite the political insults that one could ever give. It was supposed to balance up our country, supposed to balance up our country, and yet we have reduced capacity and it impacts on Northern Powerhouse Rail. The effects of this project either in the constituency as passionately extolled by honourable Member, or for those who don't get it have all been impacted by the way the project has been handled over a number of years.
But I want to get back to the point that your gentleman was here to talk about. Following discussions with St Mary's in 2016 during the passage of the high-speed rail West Midlands to London acts, the church was given an assurance to improve its noise insulation. The assurance provided clearly for a contribution up to maximum of £250,000 with no provision for inflation at that time. There are many other HS2 assurances on the public register which include commitments to fund particular works and activities.
Some of these provide explicitly index linking, but others do not. The one given to Saint Mary's does not. It is worth noting that the House of Lords committee which was set up to hear from petitioners against the bill considered the Saint Mary's case at the time and took the unusual step in 2016 of reporting that the £260,000 offer was generous. Furthermore since the assurances were given I'm pleased to report that HS2 has made other improvements to its planned for noise mitigation in the locality of the church.
This will reduce the amount of noise reaching the church in the first place. Taking into account both contexts, it is not considered appropriate to increase the amount of public funding offered to the church or to increase any other financial mitigations that were fixed and not indexed at the time that they were agreed. There is no evidence that the sums are no longer sufficient. We have inherited a difficult situation, as the audible member said, on HS2. The government priority is to get a grip
**** Possible New Speaker ****
of the costs. On that point, I'm grateful to the Minister for his comments. Will the Minister for his comments. Will he accept a point in principle that this wasn't an arbitrary amount of money offered to the church as a top money offered to the church as a top up for church funds. It was very specifically for noise mitigation specifically for noise mitigation purposes. In 2025, if the money promised in 2016 simply can't deliver that, then it is fair to have similar projects.
It is a problem that the Department for transport is the responsible body and finds itself in.
**** Possible New Speaker ****
He is right but HS2 have clearly already put in some noise already put in some noise mitigation. I understand that the agreement has not yet been reached on mitigation works to be undertaken on mitigation works to be undertaken in the church. Because of this, according to the terms of the according to the terms of the assurance, the funds cannot yet be released. So I'm encouraging the honourable Member, and the parties of HS2 and the church to focus their efforts on agreeing the works that efforts on agreeing the works that can be carried out, the timeline for them to begin.
So the available funding can be released, and so it can stretch as far as humanly possible. So I do encourage the parties to get together and begin that negotiation. I am a social member of a cricket club, my playing days are long behind me. And I know the value not just in terms of the sport but in terms of the social cohesion and solidarity, the glue that cricket clubs and other sports and social clubs provide. He speaks eloquently about his constituency.
I can say that that deal asked for an uplift for the cover of inflation. I understand the quest is currently with HS2 who are looking into the circumstances of the club, and will respond in due course. I'm hoping very shortly that he will get an answer. If he doesn't, please contact me and I will let the rail minister no. I think HS2 hit a date would have heard the impassioned plea that this historic and successful club does not miss out.
In the intervention, which was raised around roads and road conditions was I'm aware that HS2 Ltd has been working closely to improve the way such road repairs are managed. I know they have already allocated considerable resources to dealing with this particular problem. Road repairs are measured against the baseline road condition levels agreed at the start of the project butter either paid to councils in the current prices or undertaken by HS2 Ltd contractors. So are not affected by the issue of inflation.
I'm pleased to hear from the honourable member himself that he is being far more successful with his West Rail and the road repairs in his constituency, as he stated in the chamber. I will conclude again by congratulating the honourable member for securing this debate. Let me reiterate that transport is an essential part of the government's mission to rebuild Britain. We will continue to work with honourable members, local leaders, on making sure we get the delivery of infra structure projects right. As I have said, I welcome this debate, as it is vital we continue to discuss
**** Possible New Speaker ****
transport projects openly and transparently. The question is that this house
**** Possible New Speaker ****
The question is that this house do now adjourn. As many are of that opinion say, "Aye". The ayes have