(1 day, 13 hours ago)
Commons ChamberI am grateful to my hon. Friend and I hope that point is not lost on the BMA. On the Labour Benches, we are the party of labour. We were created by the trade union movement to represent the interests of working people. That has been our calling for more than a century, since this party was founded. We have shown through our actions, not just our words, that this is a party in government who are committed to defending and extending the rights of working people, to improving pay and conditions, to clamping down on exploitation, and to making sure that this is a Government with and for the people.
The BMA has a willing partner with this Government. I sometimes feel like the Government have changed, the policies have changed and the approach has changed, but the BMA’s tactics towards us have stayed the same. I understand their cynicism about politics and their grievances with the situation they are working in, but I ask them also to recognise the progress we have made when we work together. There is an opportunity confronting them now to make further progress and I urge them to seize it.
Gregory Stafford (Farnham and Bordon) (Con)
These strikes will have a massive effect on my constituents in Farnham and Bordon. I am already getting emails from constituents who are concerned about the fact that their operations will be cancelled. The BMA is being entirely irrational and it holds the lion’s share of the blame for this situation, but the Secretary of State also has to take some responsibility for what is going on. If he gives the doctors a 29% pay rise with no strings attached, it is absolutely no surprise that they come back for more. I welcome the 4,000 extra places. I would like to press him on exactly where those 4,000 places will come. Would it not be better to have published that in the workforce plan, which is continually delayed by his Department? When will that workforce plan actually come about?
(1 month, 3 weeks ago)
Commons Chamber
Gregory Stafford (Farnham and Bordon) (Con)
As a member of the Bill Committee, I had the opportunity to closely examine the development and scrutiny of this Bill alongside my Opposition colleagues. We sought to strengthen the legislation, particularly in relation to safeguarding children and ensuring robust protections for those admitted under the Mental Health Act framework.
Given the shortness of time, I will speak only about amendments 41 and 42. They make the vital clarification that the nominated person for any patient under the age of 16 must have parental or guardian responsibility unless there are clear and established safeguarding concerns. In essence, that would ensure that the parents remain the lawful decision-makers and the first and most natural safeguards for their child’s welfare.
Let us consider, for a moment, what is at stake. Imagine a vulnerable 14-year-old girl, frightened and confused during a psychiatric admission. In that moment of distress, a well-meaning adult—or, worse, someone with a hidden agenda—could persuade the child to nominate them as their representative. That individual would then gain legal powers to object to treatment or discharge decisions, while the parents—the very people who know the child best and have both a moral and legal duty to protect them—could be sidelined.
Once such a nomination is witnessed, it carries legal force. The rights and responsibilities of parents could, in effect, be overridden. Although that may sound hypothetical, it is not. Family courts have seen precisely how manipulative individuals exploit vulnerable young people. Groomers, traffickers and abusers thrive in the legal grey zones. If we are not crystal clear that only a court may displace parental responsibility, we risk leaving the door ajar for such exploitation. I ask the Minister to assure the House in winding up that no child under 16 will be permitted to override parental authority simply by nominating someone else, without a full and proper judicial process.
The Bill does have fallback provisions, which are of course welcome, but they are not watertight unless the law explicitly confirms that only a court can transfer or restrict parental rights.
My hon. Friend makes an excellent point. The only protections that I can see in schedule 2 are an age requirement, a stipulation not to be disqualified by a previous court order, and the presence of a witness. There is therefore no pre-emptive way of protecting people, which is why amendment 41 is so important.
Gregory Stafford
My hon. Friend is absolutely right. Both he and I made those points in Committee. I am surprised that the Minister does not see the risks here. The safeguard that my hon. Friend talks about must be beyond any doubt. The amendment in his name provides exactly that clarity. It would prevent unrelated or loosely connected individuals from stepping into a role that rightfully belongs to those with both a legal duty and an emotional bond—the parents or guardians—and it would preserve the fundamental principle that parents should not find their role diminished by accident or administrative oversight.
As I was saying, this is not an abstract risk; it is a very real and foreseeable consequence of the unclear drafting. These amendments do not weaken the rights of patients. They strengthen the protections around them. They ensure that in modernising this law, quite rightly, we do not inadvertently undermine the oldest and most important protection of all: a parent’s duty to safeguard their child. We must ensure that the state can only curtail that right under the strictest judicial scrutiny, with evidence tested and the child’s welfare paramount. In doing so, we will make this legislation not only legally sound but, in my view, morally right.
New clause 31, tabled by my hon. Friend the Member for Hinckley and Bosworth (Dr Evans), would require local authorities and ICBs to supply a fully costed plan to ensure they are able to provide adequate community services for people with learning disabilities and autistic people. I support that entirely. As vice-chairman of the all-party parliamentary group for special educational needs and disabilities, and from speaking to groups in my constituency such as Last Wednesday and Growing Hope, I know that the process around SEND is complicated and not fit for purpose. Fortunately, we have a chance to help it slightly with this Bill, so I ask the Minister to support new clause 31.
Sojan Joseph
I would like to speak in support of new clause 37, tabled by my hon. Friend the Member for Thurrock (Jen Craft). On Second Reading, I warmly welcomed the changes that this legislation will introduce regarding autistic people or those who have a learning disability. As a result, it will no longer be possible for someone to be detained in a mental health hospital indefinitely simply because they have autism or a learning disability. In the current system, autistic people and those with a learning disability have experienced inappropriate care, over-medication and extended periods of detention because of a lack of facilities in the NHS and social care, so this change is welcome and long overdue.
The Government have confirmed that the changes will be implemented once the necessary community provision is in place. Establishing strong support in the community is essential for not only enabling safe discharge from hospital settings but preventing unnecessary admissions in the first place. I recognise that the Government are working on setting out what strong community services look like and what resources they require to implement them. From serving with the Minister in Committee, I have no doubt about his commitment to ensuring that this community provision is introduced in a timely manner, but I support the proposal of my hon. Friend the Member for Thurrock that there should be a road map in the legislation that will provide a clear framework outlining how those services will be introduced. After all, ending inappropriate detention requires robust community-based alternatives to ensure that people with autism or a learning disability who would have previously been detained do not fall through gaps in the system.
Having a road map developed in conjunction with autistic people, people with learning disabilities, their carers and healthcare professionals will help to identify and address any gaps in service provision and workforce capacity. I also believe that it will help to reduce the risk of people with autism or a learning disability needing police intervention or emergency hospital care because the support is inadequate. By putting in place a road map, new clause 37 would help to ensure that we end all the sooner the injustice of people with autism or a learning disability being detained.
(1 month, 4 weeks ago)
General Committees
Gregory Stafford (Farnham and Bordon) (Con)
It is a pleasure to serve under your chairmanship this evening, Ms McVey.
As we have heard, the order before us will, broadly speaking, enable pharmacists to authorise pharmacy technicians to take primary responsibility for the preparation, assembly and supply of medicines in pharmacies and hospital aseptic facilities. Like the Minister, I thank the thousands of pharmacists across the country for the way they serve our communities, both in the community and in hospital settings.
The Conservatives will not be opposing this legislation. The current model of medical dispensing centralises responsibility upon the shoulders of the pharmacist, taking their clinical skills away from treating patients and underutilising qualified pharmacy technicians. It is clearly sensible, therefore, for both pharmacists and technicians to work at the top of their remit. That will be more rewarding for them and more efficient for the NHS.
That is why the Conservative Government launched a consultation in 2023 on retaining the need for each pharmacy to have a responsible pharmacist but enabling them to delegate more straightforward tasks to technicians. The risk of doing so is low, and it is further lowered by the fact that, in Great Britain, pharmacy technician is a regulated profession. I am therefore pleased to see that this Government have picked up the baton from the previous Conservative Government, and we welcome the new legislation in principle. However, I do have a few questions for the Minister.
First, embedded within these provisions is a total reliance on “supervision” and “authorisation”, yet clarity of definition is missing on how those will operate in practice for a pharmacist authorising a pharmacy technician to dispense medicines. I note that 76% of pharmacists in the consultation shared that anxiety. The Government assure us that there will be a transition period to enable the General Pharmaceutical Council to update its 2005 guidance on pharmacist supervision, but the length of that transition period remains uncertain.
Will the Minister confirm the length of that transition period to ensure that regulators can put the correct safeguards in place to preserve accountability when it comes to the rather loose terms of “supervision” and “authorisation”? What guidance has he provided to the regulator on those guidelines? This is a particularly important clarification, given the Government’s preference for oral authorisation, which, although flexible, leaves pharmacists without specific written record-keeping.
As the Minister knows, not all pharmacies have a pharmacy technician. In fact, NHS England’s 2023 community pharmacy workforce survey found that there were 17,666 full-time employed pharmacists and 4,324 pharmacy technicians. The impact assessment notes that smaller pharmacies are less likely to have a technician, so larger pharmacies will be able to dispense more cheaply and develop a broader service. With that in mind, what assessment has the Minister made of the effect on rural, remote or small family pharmacies? What plans does he have to monitor the effect of the consolidation on travel distances and patient choice?
With the time freed up by delegation of tasks, pharmacists will be able to provide contraception services, blood-pressure checks and vaccinations. They will also be able to expand Pharmacy First provision—another great service introduced by the previous Government, I note. However, as a new service, Pharmacy First was introduced within a fixed funding envelope, so what plans does the Minister have to expand that service?
Finally, what discussions has the Minister had with his counterparts in Northern Ireland regarding the establishment of a regulated profession of pharmacy technicians there?
As Conservatives, we welcome improving efficiency and giving patients faster access to appointments and prescriptions. For those reasons, the changes are to be welcomed. I conclude by paying tribute to officials in the Department, and organisations outside this House, who have worked hard to get these updated provisions before us today.
(1 month, 4 weeks ago)
Commons ChamberLet me first draw Members’ attention to my entry in the Register of Members’ Financial Interests.
I congratulate my right hon. Friend the Member for Godalming and Ash (Sir Jeremy Hunt) and the hon. Members for Rossendale and Darwen (Andy MacNae) and for Sherwood Forest (Michelle Welsh) on securing the debate, and on their eloquent and thoughtful speeches. Behind the statistics that I will put before Members, as others have done today, are the broken families with a gaping hole in their lives and a pain that will never go away. There are so many unanswered questions. What would their first word have been? When would they have taken their first steps? Who would they have grown up to become? For families who have lost a baby, these questions, painfully, tragically, will never be answered.
I have been honoured to meet representatives of charities all of which are doing excellent work to support families who have been affected by baby loss, and campaigning for improved maternity services. I pay tribute to those charities—including Bliss, Sands and Tommy’s—and to the royal colleges, and I thank the families in the Maternity Safety Alliance for sharing their very personal and moving stories with me when the shadow Secretary of State and I met them recently.
The last Government worked hard to improve maternity services. A decade ago, my right hon. Friend the Member for Godalming and Ash, then Secretary of State for Health and Social Care, announced an ambition to halve the rates of stillbirths, neonatal and maternal deaths in England by 2030, and he made encouraging progress. The stillbirth rate fell by about 20%, as did the neonatal death rate, and the maternal death rate fell by about a third.
Gregory Stafford (Farnham and Bordon) (Con)
Does my hon. Friend agree that the introduction of baby loss certificates following the pregnancy loss review under the last Government was a vital step in recognising bereaved parents’ grief and offering support on their terms?
My hon. Friend is, of course, right. Those certificates have proved to be of great comfort to many. The hon. Member for Washington and Gateshead South (Mrs Hodgson) talked about her work in that regard, and I thank her for it. I am also grateful for the work of my former colleague Tim Loughton.
One of the reasons I went into politics is the fact that one can make more of a difference as a politician than as a single doctor alone. The changes made by my right hon. Friend the Member for Godalming and Ash mean that, by quite some margin, he has saved more babies’ lives than I have as a consultant paediatrician. I assure the Secretary of State that it is not flattery when I say that he has more capacity than any NHS doctor when it comes to saving babies’ lives. I am pleased to see him here at almost midnight; I know that he cares, and I know that, like all of us, he wants to stop the tragedies about which we have heard so much today. However, I ask him to consider, every day, whether he is really doing all that he can to maximise the opportunity that he has, and, in the spirit of constructive opposition, I have a few questions for him. He said he came in with a plan, but in fact he took a year to create the 10-year plan, which creates a maternity and neonatal taskforce that is tasked with creating another plan. I sincerely hope that it is a good plan, after all this waiting, but I do worry that it has lost time, so can he confirm when it will be published?
Staffing levels have been mentioned in many tragic incidents, and the Secretary of State has promised that he will train thousands of additional midwives. Looking at the figures, an average of 10 fewer students have been accepted on to midwifery degrees in England across his two years in office compared with 2023. Can the Secretary of State confirm when he expects to train the 1,000 additional midwives he promised in his manifesto?
The previous Government increased the number of medical school places and built five new medical schools. As those students begin to qualify, the specialist training places need to be expanded and British graduates need to be prioritised. The Secretary of State seemed to understand that at Easter, but what has he done about it? The applicant-to-place ratio has risen dramatically, and now strikes are threatened, which would threaten the care of women and babies across the country.
We know that reducing baby loss starts before a baby is conceived and that factors such as teenage pregnancy, smoking, obesity and sub-optimally managed chronic conditions increase the risk of stillbirth. We must systemically improve on factors that increase the risk of baby death. I welcome the fact that the Secretary of State has brought through legislation, introduced by the previous Government, to fortify bread flour with folic acid by the end of 2026. That will prevent 200 cases of neural tube defects a year and improve the health of pregnant women. I am also pleased to see that the Tobacco and Vapes Bill is gradually making its way through Parliament. However, given that the Bill completed its Second Reading in the House of Lords on 23 April and is not due to appear in Committee until 27 October—more than six months later—there just does not seem to be enough urgency in the Government’s actions. Can the Secretary of State tell us what he is doing to improve pre-conception advice and optimise the management of chronic conditions in women to reduce the risk of baby loss?
As an NHS doctor, I pay tribute to my colleagues, who welcome almost 600,000 tiny miracles into the world each year. However, as we have heard this evening, care does not always meet the highest standards and too often avoidable deaths occur. Can the Secretary of State assure us that the findings of the ongoing Ockenden review into maternity services will be swiftly acted on? Donna Ockenden’s 2020 review into maternity care at the Shrewsbury and Telford trust found that at least 201 babies and nine mothers could have survived had they had better care. From her report came a £95 million ringfenced fund to improve the care available for expectant mothers, but as we have heard already this evening, the Government have slashed that fund from £95 million to just £2 million, with the rest of the money siphoned off to England’s 42 integrated care boards.
The Government have also reduced ICB budgets and are forcing them to restructure. I am worried that this un-ringfencing of the budget, and the distracting reorganisation, will have a negative impact on efforts to improve maternity services. What is the Secretary of State doing to prevent negative consequences?
Neonatal care can be lifesaving. One in seven babies in the UK requires neonatal care, but unfortunately their fight for life is not always won, and 1,933 babies died in neonatal care in 2023. With that in mind, will the Secretary of State clarify the extent to which neonatal services will be included in the maternity and neonatal investigation due by the end of the year? How will the quality of neonatal care be assessed? The recent NHS estates review of maternity and neonatal care did not appear to include parental accommodation, yet many parents find that their babies are transferred miles away for specialist care. May I urge the Secretary of State to recognise the value of this accommodation and make sure it is widely available?
As many Members have mentioned, black and ethnic minority women are more likely to suffer baby loss or maternal death. Can the Secretary of State update us on what progress he has made on his Government’s manifesto promise to close the maternal mortality gap for black and Asian women?
In the decade since the previous Government launched ambitions to improve maternity safety in the UK, the number of stillbirths and neonatal deaths has reduced by almost a quarter, and the number of maternal deaths has reduced by around a third. These are encouraging signs, and they show good progress. We must build on these achievements, but there is so much more work to be done. Today we have heard many stories of loss and of care failures. Only action will turn the page on baby loss. We all wish for improved maternity and neonatal care, but the Secretary of State is the man with the levers to make that happen—the levers to save hundreds of lives. I urge him to use them urgently.
(5 months ago)
Commons Chamber
Gregory Stafford (Farnham and Bordon) (Con)
To your delight, I am sure, Madam Deputy Speaker, and to the delight of the whole House—especially that of the Government Whips—I am not going to speak for very long on Report, although I am not promising not to speak for some time on Third Reading. I wish to briefly speak to amendments 5 and 8 tabled by my hon. Friend the Member for Christchurch (Sir Christopher Chope). Before that, though, I congratulate the hon. Member for Edinburgh South West (Dr Arthur) on the Bill. I am generally supportive of it and think it is entirely necessary.
Turning to the amendments, my hon. Friend the Member for Christchurch is right. It does concern me that the words
“the opinion of the Secretary of State”
are included proposed new subsection (2) of section 1E of the National Health Service Act 2006. As my hon. Friend has pointed out, proposed new subsection (4) of section 1E and proposed new subsection (5A) of section 261 of the Health and Social Care Act 2012 set out the definition of a rare cancer, and if the Bill passes, that definition will become law. I therefore think there is a contradiction within this piece of legislation: it contains an absolute definition of a rare cancer, but adds some ambiguity by referring to the “opinion” of the Secretary of State. I ask the Minister to explain how both those things can be true. If the Secretary of State decides that there is some other definition of a rare cancer, how can that possibly be in line with the definition that is written into the law?
As the hon. Member for Edinburgh South West has said, the definition that has been included in the Bill—that a rare cancer is
“a cancer that affects not more than 1 in 2000 people in the United Kingdom”—
aligns it with the UK rare diseases framework, which was published by Lord Bethell in the other place in 2021. It seems to me that that is an effective and suitable definition, so again, I ask the Minister whether he expects there to be some other definition. If he does not expect that, why is it necessary to include the words
“the opinion of the Secretary of State”?
The Bill is not even consistent. Proposed new subsection (2) of section 1E of the National Health Service Act 2006 refers to the opinion of the Secretary of State, but proposed new subsection (5A) of section 261 of the Health and Social Care Act 2012 talks about
“the opinion of NHS England”.
As my hon. Friend the Member for Christchurch has pointed out, NHS England is fortunately going to be abolished very soon. When that happens, will we have to pass either primary legislation or secondary legislation to delete those words from the Bill? Would it not be better if we deleted the words “the opinion of NHS England” now? Why will the Minister not consider removing them? If there is some reason why he thinks the Secretary of State might have to change the definition, why are those two clauses of the Bill not consistent?
I hope hon. Members will see that what the hon. Member for Christchurch and I are trying to achieve—certainly through amendments 5 and 8—is to establish a clear definition of a rare cancer. We are aiming to ensure that there is no ambiguity in that definition, and if there is to be ambiguity, we want to at least ensure that the body or authority that is going to make any changes is consistent in the legislation.
Gregory Stafford
Once again, I congratulate the hon. Member for Edinburgh South West (Dr Arthur) on bringing this essential Bill before us and thank him for the hard work he has done to make sure we get to this place. As I have said many times in this House, early detection saves lives, but without meaningful progress in research we will fall behind other countries making major advances in cancer care.
We call these rare cancers, and they are rare in their individual components, but I have been amazed by how many constituents across Farnham, Bordon, Haslemere, Liphook and the surrounding villages have contacted me in support of the Bill and to share their experiences. Despite rare and less common cancers receiving more than half of UK cancer research funding in recent years, a staggering 82% of patients surveyed by Cancer52 said that they were never offered the chance to participate in a clinical trial. That is not because there is no public support or because the science is not there, but because persistent structural barriers are in the way. The Bill addresses those barriers directly.
If enacted, the Rare Cancers Bill will appoint a national specialty lead for rare cancers within Government, creating accountability, facilitating research and collaboration, and embedding co-ordination across NHS England—while it still exists—the National Institute for Health and Care Research and cancer alliances. Secondly, it will mandate a review of the UK’s orphan drug regulations, aligning incentives such as marketing exclusivity and reduced regulatory fees with international best practice. Thirdly, it will adapt the NIHR’s Be Part of Research platform to create a dedicated, proactive registry that directly links patients with relevant clinical trials.
Let us be clear: this Bill aims to deploy smarter systems, harness the power of artificial intelligence, expand fair access to treatment, end the postcode lottery and ensure that every patient, no matter the type of cancer, has the opportunity to benefit from research and high-quality personalised care. Let us also be clear about the need. Rare and less common cancers account for 47% of all UK cancer diagnoses, yet they are responsible for 55% of all cancer deaths. That means that more than half of those who die of cancer in this country do so from conditions that receive disproportionately less investment, less attention and less hope.
The disparity in survival is stark. For some rare cancers, five-year survival rates languish in the single digits. Only 16% of people diagnosed with cancers of the pancreas, brain, oesophagus, liver or stomach survive beyond five years. By contrast, the five-year survival rate across more common cancers is more than 55%. This is not a marginal issue; this is mainstream cancer care, but it is neglected.
Our international peers are taking action. In countries such as France, Germany and the USA, regulatory frameworks are actively incentivising clinical trials for rare cancers. The UK, meanwhile, has fallen from second to 10th in Europe for access to orphan medicines. We must reverse that decline. We must unlock the potential of our research base, and this Bill gives us the legislative structure to do so.
The NHS 10-year plan, launched with the ambition to modernise our health service, is a wide-ranging document. It rightly champions early diagnosis, innovation and personalised care, and there is no doubt that many of its pillars, particularly those on genomics, digital access and therapeutic innovation, can benefit people with rare cancers, but “can” is not the same as “will”, and “should” is not the same as “must”. The plan sets out a national goal to diagnose 75% of all cancers at stages 1 or 2 by 2028. That target explicitly includes rare and less common cancers. That is an important and necessary ambition but, as campaigners have rightly pointed out, without specific structural action on rare cancers, we will not hit that target; even worse, we will leave some of the most vulnerable patients behind.
As I have said, these are not fringe diseases: these are mainstream conditions that are under-researched and under-resourced. The 10-year plan includes a number of relevant commitments, such as the whole genome sequencing of newborns, supported by £650 million of investment, which could revolutionise early detection of genetic cancer syndromes. Of course, there are some safeguarding issues around that sequencing—I do not want to pre-empt my column in PoliticsHome on Monday, but please read it for more about my concerns over those safeguards.
Likewise, the plan includes the expansion of genomic and pharmacogenomic services in the NHS, giving us the potential to offer targeted therapies for rare cancers. It has a pipeline for advanced therapy medicinal products, including CAR T-cell treatments, which are already being rolled out for certain rare blood cancers. It also streamlines the regulatory pathways through a proposed innovator passport to bring treatments to patients faster.
Those are steps in the right direction, but let me be frank: the plan does not go far enough for people with rare cancers. There is no dedicated rare cancer taskforce, despite repeated calls from Cancer52, Sarcoma UK and the Brain Tumour Charity. There is no specific ringfenced funding for rare cancer services, despite the complex multidisciplinary care that these conditions require. There are no rare cancer-specific training pathways or fellowships, despite clear evidence from clinicians that a lack of expertise is hampering outcomes. The England rare diseases action plan, published alongside the NHS strategy, takes some welcome steps on collaborative networks and data integration, but rare cancers are again folded into a general framework, rather than given the targeted attention they so desperately need.
Uma Kumaran (Stratford and Bow) (Lab)
I am here today on behalf of my young constituent, Imogen, and all young people facing tongue cancer. It is a rare cancer, with frightening and disabling treatment options. I am also here on behalf of my constituent Ros, who lost her mother to pancreatic cancer just 24 hours after diagnosis. Does the hon. Member agree that this House should be united in its support for practical, targeted reforms to advance rare cancer research, which are supported by more than 30 expert charity partners and which so many of our constituents desperately want to see passed into law?
Gregory Stafford
I thank the hon. Member for her intervention. She is absolutely right—I hope this matter has cross-party support in the House. As she points out, a significant number of charities across the country hope that the Bill will pass today, as do I.
That brings me nicely on to what Jane Lyons, the former chief executive of Cancer52, has said:
“Rare and less common cancers make up a massive part of the cancer burden in this country. They need proper structural attention—not just well-meaning inclusion in generic plans.”
She is right. We need dedicated leadership and a single accountable individual or office for rare cancer research and care. We need smarter data platforms, such as the adapted Be Part of Research system proposed in the Bill, and we need a clear strategy for delivering orphan drug access, so that the UK becomes a destination for innovation, not a detour.
When the NHS 10-year plan speaks of transformation, we must ensure that that transformation is inclusive. When we talk about prevention, early detection and innovation, we must be honest about who gets access and who does not. If we are serious about improving outcomes for all cancer patients, rare cancers must not be treated as an afterthought. They must be recognised for what they are: a major public health challenge hiding in plain sight.
The 10-year plan gives us the tools, but it is now up to this House and to Ministers to ensure that those tools are used equitably, strategically and with urgency. That is why I was incredibly saddened to hear that Dr Susan Michaelis, the founder of the lobular moonshot project, died a couple of days ago. Susan’s life and legacy exemplify why this Bill matters. Lobular breast cancer affects 22 women every single day in the UK and more than 1,000 globally. It is not rare in the strict legal sense—more than six per 100,000 are diagnosed annually—but due to the severe lack of research, awareness and tailored treatment, it deserves to be treated as such by our systems.
Susan was due to meet the Secretary of State on 14 July—this coming Monday—to discuss how to accelerate the vital five-year research project she helped to initiate. Thankfully, that meeting will still go ahead. The campaign will not stop. The lobular moonshot project will continue—for Susan, and for every woman still facing this disease without the research-backed options that she deserved.
Susan is far from alone. A constituent recently wrote to me about their mother, who died in 2011, just three years after her diagnosis with glioblastoma multiforme, an aggressive and incurable brain tumour. The average glioblastoma survival time is 12 to 18 months; only 25% of patients survive more than a year, and just 5% live beyond five. Another campaigner spoke movingly about the delays she faced before being diagnosed with a rare kidney cancer—initially misdiagnosed, postponed by covid, and ultimately caught too late.
There are so many rare cancers, and the stories repeat. Rare cancers are not rare to those living with them; they are rare only to the system. According to Jane Lyons, the former CEO of Cancer52,
“Something like 47% of all cancer diagnoses are for rare and less common cancers, but they account for 55% of all cancer deaths…That’s a massive number of challenges—and a huge opportunity for impact.”
Sarcoma UK’s recent report found that one in three sarcoma patients waits more than six months to be diagnosed. Referral pathways are frequently misapplied, and this delay is not a minor inconvenience; in cancer care, it can be fatal.
The Brain Tumour Charity has called the Bill
“essential for any real hope of progress in finding a cure.”
The Less Survivable Cancers Taskforce has declared that this legislation is
“crucial for early diagnosis and equity of access.”
The Urostomy Association, in its rare cancers manifesto, calls for urgent structural change to improve data, screening and outcomes, and Lynch Syndrome UK has spoken powerfully about the opportunities to accelerate genetic-led, AI-informed cancer prevention if rare cancer research is properly funded.
I believe that the Rare Cancers Bill will help to achieve that. It has three core provisions: first, a named lead for rare cancer research so that this agenda has a home in Government and a voice at the top table; secondly, a review of the orphan drug regulations to create better commercial incentives for new treatments and trials; and thirdly, a patient-focused data system built into the Be Part of Research platform so that people are no longer left in the dark about trials that could change their lives. This is not just about saving lives; it is about improving them. It is about ensuring that families are not left with grief and regret when better systems might have given them hope.
Today, as we consider the Rare Cancers Bill, let us remember people like Susan Michaelis and the countless families who have campaigned for change they may not live to see. Let us recognise that rare cancers are not someone else’s problem, but a public health injustice hiding in plain sight. Let us pass the Bill—not just for the scientists and clinicians, but for every patient, and for every parent and partner who has watched a loved one suffer from a cancer few people can even pronounce. This is our chance to correct the imbalance, drive innovation and deliver real, lasting change. If we seize this moment, we can ensure that every patient—no matter how rare their cancer—can access trials, treatment and the possibility of life.
Let us not waste this opportunity. Let us be clear-eyed about the gaps and build an NHS that genuinely serves every patient, with every type of cancer, in every part of this country. Together, let us leave a legacy worthy of those we have lost, and transform care for those still fighting.
(5 months, 2 weeks ago)
Public Bill Committees
Zöe Franklin
I beg to move, That the clause be read a Second time.
The new clause would introduce a dedicated veterans’ mental health oversight officer, recognising that those who serve or have served in the UK or Commonwealth armed forces face distinct mental health challenges that are not always adequately met by the current system. Far too many veterans experience post-traumatic stress disorder, depression, anxiety or substance misuse that, sadly, is linked to their service. Yet they are often treated within a system that does not fully take account of those experiences, and they are sometimes detained under the Mental Health Act without the benefit of trauma-informed, veteran-specific pathways of care.
New clause 9 seeks to change that. It would create an independent officer, tasked with monitoring the use of the Mental Health Act in relation to veterans, advocating for tailored assessment and care linked to veterans’ service history, promoting alternatives to detention where appropriate, particularly through veteran-specific services, and reporting annually to Parliament on outcomes including rates of detention, recidivism and systemic barriers. It is not just about oversight; it is about respect and responsibility.
Gregory Stafford (Farnham and Bordon) (Con)
I am very sympathetic to the hon. Member’s concerns, but how does she see the new clause fitting in with the already established armed forces covenant, which protects and promotes healthcare for veterans across the country?
Zöe Franklin
I see them as absolutely sympathetic to each other and working in concert. We want to ensure that veterans have specific, tailored mental health care, as is outlined in the Bill. That is why the new clause would ensure that veterans’ unique needs are not just recognised but actively addressed. It is a practical and overdue step to improve care, safeguard rights and deliver the joined-up service that veterans deserve. After all, they give so much to our nation through their service.
I hope that the Minister will support the new clause, but if he does not, I hope that he will outline for the Committee how the Government will ensure that the aims of the new clause will be addressed through the Bill and its accompanying documents as they stand.
Aphra Brandreth (Chester South and Eddisbury) (Con)
It is a pleasure to serve under your chairmanship, Mr Vickers. I rise to speak in strong support of new clause 13, tabled by the shadow Minister. The new clause would place a duty on the Secretary of State to review the functions and effectiveness of the regulatory authority, which is currently the Care Quality Commission, within one year of the passage of the Bill. The new clause is a timely, necessary and constructive addition to the Bill.
As colleagues will know, the Care Quality Commission plays a dual role in relation to the Mental Health Act. First, as the regulator of services, it ensures that providers meet fundamental standards of care and safety. Secondly, through its specific responsibilities in visiting and speaking to those detained under the Act, it ensures that people’s rights are protected and that the law is used appropriately and humanely. That is no small task. It is a balance that requires the CQC to be not only reactive but proactive, and not only independent but responsive to the lived experiences of patients—especially to the voices of the most vulnerable. That is why the new clause matters. As we bring forward significant reforms to the Mental Health Act through the Bill, and rightly modernise and improve safeguards and place greater emphasis on autonomy, dignity and therapeutic benefit, we must also ensure that our system of oversight and regulation is fit for purpose.
I welcome the direction that the Bill sets. Its four core principles are rightly placed at the heart of the legislation: choice and autonomy, least restriction, therapeutic benefit, and seeing the person as an individual. Those principles must shape the way that care is delivered on the ground. That means they must also shape the way that care is monitored, inspected and held to account. A review of the regulator’s role is not about criticism for its own sake; it is about ensuring that the regulatory framework supports and reinforces the ambitions of the Bill and that it can respond to emerging challenges, shine a light where services are falling short and, crucially, act to protect patient rights.
Gregory Stafford
My hon. Friend is being slightly charitable to the CQC. Given Penny Dash’s review, we all know that the CQC has significant problems, otherwise we would not be reviewing it. Does my hon. Friend agree that the new clause is absolutely vital because of the failures of the CQC up to this point, and our lack of faith in it being able to meet the challenges that this legislation will bring to the mental health sector? Does she also share our concern about the CQC’s ability to regulate and scrutinise properly?
Aphra Brandreth
My hon. Friend is absolutely right. We have seen examples where regulators have not intervened quickly or robustly enough, and where systemic issues went unnoticed or unaddressed for far too long. We need to strengthen the remit and ensure that the CQC is properly equipped and held to the high standards that we expect of it.
I am an economist by background, so evaluation is something I think about a great deal. Reform, however well intentioned, must be followed by evidence, scrutiny and a willingness to learn and improve. The new clause ensures that we do not just set change in motion, but that we stop to ask whether it is working, whether the right things are being done, and if not, how we can improve.
The review required by the new clause would look not only backwards at whether the regulator has effectively carried out its existing duties under the Act, but, crucially, forwards, assessing whether it is ready to meet the responsibilities placed on it by the new reforms. I particularly welcome the requirement for the review to be published and laid before Parliament. Transparency is essential. It would allow Parliament to scrutinise but also gives patients, families, professionals and the public confidence that those questions are being asked seriously and answered publicly.
Ultimately, the new clause is about improving outcomes. When regulation works well it safeguards dignity, prevents harm, identifies and spreads good practice, develops trust and helps us build a system where the principles of this Bill—choice, autonomy, less restriction and greater therapeutic benefit—are not just written in statute, but visible in practice. That is especially important in mental health care, where so often the people subject to the Act are among the most vulnerable. Those in in-patient settings, particularly those who are detained, are often not in a position to advocate for themselves. They rely on a system that is vigilant, takes its safeguarding responsibilities seriously and puts patients’ rights first.
I hope that all members of this Committee will support the new clause. It is collaborative in its intent, constructive in its purpose and essential to delivering the meaningful reform that we all want to see. It reinforces the importance of accountability, transparency and listening to those most affected by this legislation. We owe it to those individuals and their families to make sure that we not only change the law, but also the culture and oversight that surrounds it. This review would help us do exactly that.
(5 months, 2 weeks ago)
Commons Chamber
Gregory Stafford (Farnham and Bordon) (Con)
I congratulate the hon. Member for Birmingham Erdington (Paulette Hamilton) on securing the debate.
We have learned this week that rather than the Government ensuring that funding reaches the frontline, spending on staff at the Department of Health and Social Care and seven other arm’s length bodies has increased by more than 10% since Labour came to power, while GPs, social care providers and hospices are forced to do more with less.
The situation is further compounded by rising financial pressures. Despite repeated promises that additional funding would improve patient care, the chief financial officer of NHS England has confirmed to the Select Committee that all the extra money allocated to the NHS will be swallowed up by national insurance increases, inflation and pay settlements, which means that none of it will go towards real improvements in frontline care.
The rise in national insurance contributions was supposed to bolster the NHS and social care. In reality, it has landed like an extra tax on providers themselves. GP surgeries, care homes, hospices and community services are all grappling with the additional payroll costs, just as they struggle with surging demand and chronic workforce shortages. The Institute of General Practice Management estimates that the average GP practice now pays an extra £20,000 a year in national insurance alone. Across the nearly 6,500 practices, that adds up to around £125 million a year—money that could otherwise pay for more than 2 million GP appointments, at a time when patients are struggling to be seen.
Adult social care providers face an equally stark reality. The Nuffield Trust projects that employers will shoulder nearly £940 million in extra national insurance costs in this financial year, on top of the £1.85 billion required to cover the rise in the national living wage. Local councils already face a £665 million shortfall in delivering their legal social care duties. The Government have promised a 3% real-terms rise in NHS revenue spending each year to 2028-29, reaching £232 billion by the end of that financial year, yet despite the headline increases, capital investment is being held flat in real terms. NHS leaders have made it clear that it will not be enough to rebuild or modernise our hospitals, or to fund the facilities required to support more care in the community.
The Health and Social Care Committee’s recent inquiry, “Adult Social Care: the Cost of Inaction”, has drawn attention to the enormous human and economic toll of the Government’s failure to reform the care sector. From the burden of unpaid carers to the economic impact of people leaving the workforce due to unmet care needs, the system is under severe and unsustainable strain, but rather than tackling this issue, the Government have once again kicked social care into the long grass and are waiting for a report from Baroness Casey that will probably not emerge until the very end of the Session. The cross-party talks that this Government promised have been scrapped again.
Although the spending review includes £4 billion in additional adult social care funding and an increase in the NHS minimum contribution to the better care fund, there remains little clarity on how the Government will fund their commitment to deliver a fair pay agreement for care workers. It is also far from clear that the better care fund is currently structured to meet the real needs of the care sector, rather than simply alleviating pressures in primary care. These estimates are not abstract figures; they translate directly into longer waits for elderly patients, overstretched family carers and staff driven to exhaustion.
Can the Minister confirm exactly how much funding the Government will allocate next year to tackle the social care workforce emergency, reduce waiting lists for assessments and services, and ensure that councils can meet their statutory obligations? What concrete recruitment and retention measures will be put in place to attract and retain carers, nurses and support workers in this vital sector, and how much new capital investment will be committed to help providers to modernise facilities and expand capacity to meet the needs of our growing and ageing population? When will the cross-party talks that the Government promised on social care happen? They must happen; otherwise, all the good effort—from Members on both sides of the House—on this issue will be lost. Finally, with social care vacancies entrenched and NHS productivity still trailing pre-pandemic levels, will the Minister set out what credible workforce and capital investment plans will be included in the forthcoming NHS 10-year plan to address these challenges once and for all?
I pay tribute to all the health and social care workers—employed or voluntary—across this country. This Government, with their massive majority, have a real opportunity to make real changes. They must start doing so now, and quickly.
(5 months, 3 weeks ago)
Commons Chamber
Gregory Stafford (Farnham and Bordon) (Con)
Thank you very much, Mr Deputy Speaker. I welcome you to your place today.
It is an honour to speak in this debate on behalf of His Majesty’s Opposition, and I pay tribute to the hon. Member for Dudley (Sonia Kumar) for securing it. Her speech included the wealth of experience that she brings to the topic, and I especially congratulate her on putting this issue so clearly on the agenda today in the House. It was a powerful and wide-ranging speech that demonstrated the wide range of issues and conditions that can lead to incontinence.
As the hon. Member for Nuneaton (Jodie Gosling) told us earlier, incontinence is a condition that affects around 14 million people across the UK, yet too often it remains misunderstood, under-discussed and—worse still—dismissed. One in three women experience urinary incontinence, and half a million adults live with bowel incontinence. Incontinence does not discriminate; whether bladder or bowel, temporary or chronic, or mild or severe, it touches people of all ages, backgrounds and walks of life. It affects new mothers, people recovering from surgery, those with neurological conditions, the elderly, and even children. However, too many suffer in silence, held back by stigma, isolation, or the belief that nothing can be done.
Like other Members, I received some heartbreaking stories from my constituents in Farnham, Bordon, Haslemere, Liphook and the surrounding villages. Incontinence is a medical issue, not a personal failing. It is not something to be ashamed of; it is something to be addressed through compassion, awareness and proper care. The impact of incontinence can be profound. It affects people’s confidence, their work, their relationships and their mental health. That is why Continence Week, which we are currently marking, matters. We cannot expect people to reach out for help unless we first create a culture where they feel safe and supported in doing so. We also need to ensure that services are in place to respond when they do seek help. That means better access to continence nurses, urologists, and physiotherapists, such as the hon. Member for Dudley. It means investing in community support, and in research and innovation, and recognising that continence care is a core part of our health system, not an afterthought.
I therefore welcome the Government’s stated ambition to tackle inequalities in women’s health and to address conditions such as incontinence more seriously, but warm words and long-term ambitions are not enough when so many continue to struggle. For example, the “Excellence in Continence Care” guidance, first published in 2018, was a groundbreaking piece of work, but we now need clear next steps, funding and measurable outcomes. We must not allow this to drift for another seven years while millions suffer in silence.
Under the previous Conservative Government, we delivered real and lasting progress in this area. In 2022, we published England’s first ever women’s health strategy, a genuine turning point shaped by listening to more than 100,000 women’s voices. That strategy committed to trauma-informed care, expanded research and, crucially, improved the quality and accessibility of information on the NHS website so that women could make informed choices about their own health.
Under our leadership, women’s health hubs were launched with a clear mandate to exist in every integrated care system, bringing services closer to communities and breaking down barriers to care. We also ensured the creation of specialist mesh centres across England, delivering multidisciplinary, regionally-based care for women facing the severe consequences of surgical complications. At a recent roundtable I attended with lecturers from Bath University on mesh, Primodos and valproate, it was clear that there is still more work to do to support these women and to learn from the past. I thank the hon. Members for Wolverhampton West (Warinder Juss) and for Harlow (Chris Vince) for raising the mesh scandal so passionately earlier.
On incontinence, the Conservative Government backed National Institute for Health and Care Research funding for vital research into patient-reported outcome measures, empowering patients, improving clinical care and ensuring that the lived experience is properly reflected in decision making. As my hon. Friend the Member for Dumfries and Galloway (John Cooper) so powerfully elucidated earlier, men are often forgotten in this area. On the Opposition Benches, we support any culture and any steps that will help men with incontinence. As the hon. Member for Strangford (Jim Shannon) mentioned, we men are pretty poor at going for diagnosis and treatment, and that needs to change.
The scale of the issue remains significant. Nearly half of women experience incontinence after childbirth and one in 10 experience faecal incontinence, yet only 17% seek help. That is often because they are told subtly or directly that it is simply part of ageing or the price of motherhood. That attitude was unacceptable then and must not be tolerated now. When a third of women suffer pelvic floor disorders after giving birth and still face barriers to care, when men living with incontinence are afraid to leave their homes, and when people are forced to depend on charities for access to basic hygiene products, it is clear that we have a public health problem that transcends mere inconvenience.
Will the Department commit to publishing an updated “Excellence in Continence Care” strategy this year, with clear timelines and accountability? Will we see dedicated funding to expand women’s health hubs further, so that continence care is a core service, not a bolt-on? Will the Minister also bring forward a plan for better health services for male incontinence? Will NHS England guarantee national consistency of access to continence services and products, ending the unacceptable postcode lottery? Will the Government protect and grow funding for continence research to improve treatments for men and women?
Finally, I pay tribute to the organisations, including Bladder and Bowel UK, Prostate Cancer UK and the Urology Foundation, that are breaking taboos and supporting patients so tirelessly, but it is not their responsibility alone; the Government must lead. We Conservatives made a start, and we now need the current Government to have the same urgency, ambition and delivery to ensure that these hard-won improvements are built upon so that no one is left to struggle in silence.
(5 months, 3 weeks ago)
Public Bill Committees
Gregory Stafford (Farnham and Bordon) (Con)
It is a pleasure to serve under your chairmanship, Sir Desmond. You and the Committee will be pleased to know that my hon. Friends have made most of the points I wanted to flag.
In poll after poll and survey after survey, patients feel they do not get information in a timely and constructive way. Our amendment 46 would give patients a stronger say in their future care if they lose capacity. It clarifies that patients must be given clear, proactive support to understand, prepare and use the documents. It is about ensuring that advance choice documents are not just theoretical paperwork, but living, respected statements of a patient’s wishes.
I therefore support the clause and the amendment, and I ask the Minister three questions. How will NHS England and local integrated care boards ensure that commissioners are trained to respect and use ACDs in practice, especially in emergencies? Secondly, what oversight will ensure that ACDs are not simply ignored at the bedside, when a patient is most vulnerable? Will the Government consider a review mechanism so that we can assess how well ACDs are working in a few years’ time, after the Bill is passed?
I turn briefly to Liberal Democrat amendment 18. Like other hon. Members, I feel that the inclusion of financial information in an ACD is not appropriate, both from a practical and a personal security, safety and information point of view. I do, however, completely support the hon. Member for Winchester’s overall view that there is a significant problem with how financial stress can affect a person’s mental health. Like him, I call on the Minister to think about how we as a country, whether in this Bill or somewhere else, can address the impact of financial stress on mental health.
I will speak first to amendment 46. We agree with the principle of the amendment, but do not think it necessary. Under the Bill, if an individual who is likely to benefit from making an advance choice document approaches services to create one, they should be offered information and appropriate support to do so. The approach that we have taken in the Bill is therefore functionally equivalent to a right to request an advance choice document.
(5 months, 3 weeks ago)
Public Bill Committees
Josh Dean (Hertford and Stortford) (Lab)
It is a pleasure to serve under your chairship once again, Mrs Harris. The Minister has set out in detail the function of clause 54, so I will not cover that in detail for reasons of time. I welcome the clause, which represents a step forward in regulating the placement of children and young people in adult treatment settings, and in ensuring their safeguarding. I welcome the fact that it recognises the need to review the existing safeguards available to young people.
The independent review of the Mental Health Act made recommendations in this area, including that when an under-18 is placed on an adult ward, the CQC should be notified within 24 hours, and that the reasons for and the proposed length of the placement should be recorded. I would be grateful if the Minister would set out what consideration the Government have given to those recommendations, and whether they will form part of the review.
I turn to the important matter of children and young people who are under 18 placed in adult treatment settings. I think we all recognise the extremely difficult context in which these detentions take place. We know that there is a serious shortage of specialist in-patient beds for children and young people, which means that places are often full or may not be available at a time of urgent crisis.
When someone under 18 is placed in an adult treatment setting, they are more likely to witness or even experience high levels of restraint, be denied support from their peers, and lack access to educational opportunities. These placements can actually cause further harm to children and young people’s mental health, and therefore be detrimental to their recovery. I will be grateful if the Minister can assure me of the actions that the Government will take to further safeguard those children and young people who hit crisis point and find themselves in adult treatment settings because of the shortage of beds. How will we ensure that they are protected from being placed in inappropriate treatment settings?
I do not wish to test your patience, Mrs Harris, but before I conclude I want to examine the point about children and young people a little further, given the interaction of clause 54 and associated new clauses with their treatment. I welcome the Government’s consistent restatement of the importance of getting the Bill right for children and young people. I know that the Minister takes such matters incredibly seriously, and I have listened carefully to what he has said this afternoon and throughout the Committee.
The Minister has stated that a number of the reforms relating to children and young people will be addressed in the code of practice, but that contrasts with the approach of many of the welcome safeguards set out for over-18s in the Bill. Will the Minister clarify why these issues are being addressed differently when it comes to children and young people, compared to adults? Children and young people are a uniquely vulnerable group.
On the point about the code of practice, I note that any deviation from that would need to be justified, but my understanding is that the code cannot impose duties on practitioners or require them to exercise their functions under the Act. I am concerned that putting safeguards for under-18s on a different footing from those for adults could make it harder for young people to access those safeguards. I welcome much of the work being done by the Bill, and I want to make sure that children and young people can also access its safeguards. I will be grateful if the Minister can address those points in his response.
In conclusion, I welcome the step forward that clause 54 represents, because it addresses an important issue that we need to get to grips with. I look forward to the Minister’s response.
Gregory Stafford (Farnham and Bordon) (Con)
It is a pleasure to serve under your chairmanship, Mrs Harris. I rise to speak in support of clause 54, but with the caveat that it would be much more effective if new clause 12, in the name of my hon. Friend the Member for Hinckley and Bosworth, were added to the Bill.
Regulation 18 of the Care Quality Commission (Registration) Regulations 2009 requires healthcare providers to notify the Care Quality Commission of certain serious incidents. However, it may not comprehensively cover all mental health-related admissions of minors. Clause 54 responds to concerns about transparency and safeguarding in child and adolescent mental health services, and aims to ensure that all relevant incidents are properly monitored and reported.
Like other hon. Members who have spoken, we welcome the Government’s shift to improve these standards; there is support for that across the Committee. The clauses about children and young people are some of the most vital parts of the Bill. They are vital not only to get the Bill right but, more importantly, to ensure that children are protected. That is why new clause 12, in the name of my hon. Friend the Member for Hinckley and Bosworth, is so essential to strengthen the Bill.
The new clause would amend section 131A of the Mental Health Act 1983, which governs the accommodation of children in mental health settings. It responds to ongoing concerns about the inappropriate placement of children on adult wards, which can be distressing and unsafe, and which is clearly contrary to best clinical practice. The new clause would introduce a requirement that hospital managers must justify such placements in writing, including an explanation of why no alternative was available, and the steps being taken to ensure the child’s safety and transfer to more suitable accommodation. The new clause would also introduce mandatory reporting to regulatory authorities when a child was placed on an adult ward for more than 24 hours, and to local authorities when the placement exceeds 28 days, or involves an out-of-area admission.
The new clause would ensure that children are placed on adult wards only when absolutely necessary. It requires the written justification and formal notification of placements. It involves local authorities and regulators in monitoring prolonged or out-of-area placements, and strengthens and clarifies existing provisions of the Mental Health Act. Most importantly, it aligns with clinical guidance on age-appropriate mental health care.
I turn to new clauses 17 and 20, tabled by the Liberal Democrats. I think that their purpose is in some ways similar to that of our new clause 12. However, they put the cart before the horse, or the horse before the cart —it depends on which way round we are. We are trying to fix the system by ensuring that nobody enters an inappropriate place unless there are exceptional circumstances; new clauses 17 and 20 try to exclude those circumstances, but without necessarily fixing the problem in the first place. Although I understand, as ever, the motivations and sentiments of the new clauses tabled by the Liberal Democrats, I do not think they will have the intended consequences; at least, I do not think they will be effective.
I have two questions for the Minister about clause 54. First, will the Department publish regular summaries of the notifications mentioned in the clause showing trends and disparities across the services or regions? Secondly, will the Care Quality Commission be resourced and empowered to act swiftly where patterns of overuse or misuse emerge?