(1 day, 17 hours ago)
Commons ChamberI thank my hon. Friend the Member for Ealing Central and Acton (Dr Huq) for securing the debate, and I thank the other Members who have spoken.
As my hon. Friend has said, more than 50,000 men are diagnosed with prostate cancer every year, and one in eight will be diagnosed with it during their lifetime. I commend her for raising an issue that I know is very personal to her, as she has articulated so well. I am sure that her late father is watching her carefully. She was also right to support her constituent Peter by raising this issue, which affects so many men, and to highlight the number of black and minority ethnic men presenting with the disease. That is something on which we have all campaigned very strongly.
Timely and equitable diagnosis and access to innovative medicines for the treatment of prostate cancer are of the utmost importance. To support faster diagnosis, NHS England has redesigned pathways to maximise capacity. We are also aware of very early-stage trials of the use of artificial intelligence in prostate cancer detection, and we look forward to a formal report on those trials, so that the evidence can be considered carefully.
The effects of prostate cancer have been well noted tonight, as has the number of men who are affected. About 12,000 die from it each year, more than 300 of them in Northern Ireland. Does the Minister agree that Northern Ireland should be included in the commissioning, and will she undertake to speak to the Health Minister in Northern Ireland about the issue? Does she also agree that this needs to sit alongside a UK-wide prostate cancer screening programme, targeting in particular people with a family history of the disease?
We talk regularly with our colleagues in Northern Ireland, and I am always happy to do so. As the hon. Lady knows, this matter is devolved, so it is a matter for Northern Ireland, and we respect the devolution settlement.
Our elective reform plan, published in January 2025, builds on the investments already made with an ambitious vision for the future of diagnostic testing. This will include more straight-to-test pathways, increasing and expanding community diagnostic centres, and better use of technology. With nearly 170 community diagnostic centres up and running, they can take on more of the growing diagnostic demand in elective and cancer care. We will also deliver additional capacity in 2025-26 by expanding some existing centres and building up to five new ones. We will address the challenges in diagnostic waiting times, providing the CT, MRI and other tests that are needed to reduce the elective and cancer waits.
Members know that the National Institute for Health and Care Excellence—we have heard a little about it this evening—is an independent body responsible for assessing whether new licensed medicines can be recommended for routine use in England, based on a thorough assessment of their clinical and cost effectiveness. The NHS is legally required to fund NICE recommended medicines, ensuring consistency of access for NHS patients wherever they live in England.
NICE is able to recommend promising new cancer medicines for use through the cancer drugs funds, which supports patient access while real-world evidence is generated to address clinical uncertainties. Through the cancer drugs fund, NHS patients also benefit from access to cancer medicines from the point of positive draft NICE guidance, accelerating access to clinically and cost effective medicines by up to five months. Through this process, many thousands of patients, including patients with prostate cancer, have been able to benefit from effective new treatments at prices that represent value to the NHS.
The drug that is the subject of this debate, abiraterone, is licensed, as my hon. Friend the Member for Ealing Central and Acton said. It is recommended by NICE for use in the treatment of certain types of metastatic prostate cancer, and it is now routinely available to NHS patients in England in line with the NICE recommendation. NHS England has recently put in place an interim commissioning policy that makes abiraterone available for men with high-risk, hormone-sensitive metastatic prostate cancer, pending the outcome of NICE’s update of its negative guidance. I am pleased that this approach was agreed between NICE and NHS England late last year to ensure uninterrupted access to abiraterone for men leaving the STAMPEDE trial.
My hon. Friend raised particular concerns about access to this drug for men with non-metastatic prostate cancer. First, it is important to note that abiraterone is not licensed by the MHRA for use in this indication, and it is therefore off-label. NICE does not evaluate the off-label uses of medicines, and the drug is also now off-patent and available generically, which means there is no single manufacturer that could sponsor an MHRA licence application or NICE evaluation. It is therefore for NHS organisations to take decisions on funding based on the available evidence.
NHS England considered abiraterone for the treatment of non-metastatic prostate cancer through its clinical prioritisation process last year. Through this process, NHS England concluded that evidence supported the routine commissioning of the drug in this indication. Approximately 7,000 men per year could be eligible for this drug, and it is estimated that it would cost an additional £20 million per year to fund that.
While, as my hon. Friend said, there may be some cost savings in the pathway from preventing the disease’s progression, these are unlikely to materialise for about five years and would not impact the up-front costs of the £20 million per year for the additional out-patient monitoring and drug cost. I had not heard the figures she outlined, but I will get back to her on some of the questions she asked, and it would be helpful to know where those figures are from.
Unfortunately, it has not been possible to identify the necessary current funding to support the commissioning of abiraterone for this purpose or any other treatments in this prioritisation round. I know that is disappointing for those affected, and I want to acknowledge that this is a really difficult and unusual situation. However, I want to assure my hon. Friend and other hon. Members that the funding position for this treatment does not mean that there are no treatment options. The NICE guideline on prostate cancer recommends the treatment of non-metastatic prostate cancer with surgery and radiotherapy.
I want to assure hon. Members that NHS England is keeping this position under review, and would reconsider funding for abiraterone for non-metastatic prostate cancer if the funding position changes. Earlier this month, NHS England met Prostate Cancer UK, which shared its financial model of the expected cost impacts. NHS England is reviewing this in more detail, and I encourage it to continue those discussions.
In closing, I recognise how hard it is when patients want access to effective treatments. I also recognise the distress and worry it causes not only for patients, but for their families and friends. The Government are committed to ensuring that we provide access to the most innovative and effective medicines, but it has to be in a way that is sustainable and affordable for the NHS. It is right that NHS England continues to engage with Prostate Cancer UK, and I know that my hon. Friend and other Members will keep an eye on this and similar issues with drugs coming forward. The national cancer plan will seek to improve every aspect of cancer care, to better the experience and outcomes of people with cancer. Our goal is to reduce the number of lives lost to cancer over the next 10 years. I am grateful for the opportunity to respond to the debate this evening.
Question put and agreed to.
(5 days, 17 hours ago)
Commons ChamberI respectfully disagree with that position. I believe that there are already levels of safeguarding in the legislation.
New clause 15 is a compassionate and practical clause that would ensure the law works not only with the individual making the choice, but for the family they leave behind.
I move now to speak briefly on new clause 5, which I would strongly encourage Members to vote against. Tabled by my right hon. Friend the Member for Walsall and Bloxwich (Valerie Vaz), the new clause would require the Government to publish a report on any impact the Bill might have on civil procedure rules and probate proceedings. As has already been pointed out, the chief medical officer has warned that we are at serious risk of creating a “bureaucratic thicket” with this legislation. In my view, new clause 5 would do just that: requiring the Government to publish such a report would create unnecessary bureaucracy and divert resources without adding any material value.
As Members will be aware, the Government have already published an impact assessment on the relevant impacts that they deem the Bill could have. There is nothing in the Bill likely to result in any changes to civil procedure rules, so there is no obvious justification for producing a formal report on that issue. It is important that we remain focused on practical and meaningful safeguards, rather than procedural requirements based on immaterial impacts. Introducing extra reporting requirements based on speculative impacts risks creating unnecessary red tape without delivering any practical benefits. I therefore urge Members to reject new clause 5 and accept that no additional reporting in that area is needed.
As we rightly scrutinise the Bill today, on top of nearly 97 hours of scrutiny so far, which is more than many Government Bills receive, we must keep dying people at the centre of the debate. I speak today in support of new clause 15 and its consequential amendment 54 and in opposition to new clause 5 for exactly that reason—to keep terminally ill people at the centre of this discussion, and at the centre of this piece of legislation. No matter where we stand on this pressing matter—whether Members support it or have reservations—it is crucial that we collectively ensure that the Bill is workable, compassionate and truly centred on the dying person. As legislators, that must always be our chief concern.
I rise to support and speak briefly to amendment (a) to amendment 77, tabled by the hon. Member for South Antrim (Robin Swann), and I will speak to new clause 13, amendment 96 and other amendments if time permits.
I was rather confused when I looked at the amendment paper a few days ago and noticed that amendments that would directly impact on Northern Ireland had been tabled. When last I checked, the Bill as a whole extended only to England and Wales, so I find amendments 76 and 77 perplexing. To be clear, health and criminal justice are devolved matters. The people of Northern Ireland elect their own Assembly to make precisely these sensitive decisions, including whether to legislate for assisted suicide, which is an issue of profound moral weight and cultural consequence.
My hon. Friend is right to pursue this matter. The hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) said it earlier on: the NHS was formed by the Labour party and is of the Labour party. These amendments would ensure that the Secretary of State could overrule Assembly Members. In other words, 90 Members of the Assembly could make a decision, but the Secretary of State could overrule it—surely that is incredibly wrong. It flies in the face of the democratic process that we are here to uphold.
My hon. Friend is absolutely right. On a constitutional basis alone, amendment (a) to amendment 77 is necessary, and I hope that hon. Members will feel they can support it.
Moving on to factors beyond the constitution, I am concerned that there is a dangerous absence of an adequate regulatory framework for lethal drugs under the Bill. At present, clause 25 gives the Secretary of State powers to approve lethal drugs, while clause 34 mandates the Secretary of State to make provision for prescribing, dispensing, transportation, storage, handling, disposal and record keeping, as well as enforcement and civil penalties. However, the fundamental issue of how these approved substances are actually approved remains alarmingly weak. The Bill defines “approved substances” simply as
“a drug or other substance specified”
by the Secretary of State in regulations. There is no explicit requirement for those substances to undergo specific, rigorous testing for their use in assisted dying.
When this issue was debated in Committee, I was disappointed to see good-faith amendments to engage, such as amendment 443, being dismissed.
No, I will not.
Amendment 443 sought to mandate that those substances be approved through the Medicines and Healthcare products Regulatory Agency and either the National Institute for Health and Care Excellence or the All Wales Medicines Strategy Group processes. I therefore strongly support amendment 96, tabled by the hon. Member for Sleaford and North Hykeham (Dr Johnson), which
“ensures that drugs can only be approved if the Secretary of State is reasonably of the opinion that there is a scientific consensus that the drug is effective at ending someone’s life without causing pain or other significant adverse side effects.”
That is a common-sense approach that should attract support from across the House.
This week, more than 1,000 doctors wrote a powerful letter to all MPs to outline their deep concerns about this Bill, calling it a
“real threat to both patients and the medical workforce”.
I strongly urge this House and colleagues to read that letter before Third Reading. The Government’s own impact assessment does not provide any comfort with regard to the use of lethal drugs under the terms of the Bill, which the doctors’ letter picks up on, saying that
“there is no requirement for…[the drugs]…to undergo rigorous testing and approval that would be required of any other prescribed medication, nor indeed for them to be regulated by the Medicines and Healthcare products Regulatory Agency”.
They go on to say that that is
“contrary to all good medical practice”.
This matters not just for regulation, but with regard to patient safety and complications. There is no requirement in the Bill to inform patients about how risks—including a prolonged death, rather than the promised peaceful and dignified death—will be managed. Complications do occur, and this is not scaremongering. In Oregon, when complications have been recorded, patients have experienced difficulty swallowing, drug regurgitation and seizures, and they have even regained consciousness. In Canada, a Canadian association has noted that patients have experienced regurgitation, burning and vomiting.
I draw Members’ attention to the written evidence submitted to the Bill Committee by a group of expert senior pharmacists and pharmacologists. In their submission, they warn that the approach of the Bill puts the cart before the horse. Specifically, they caution against proceeding without
“a comprehensive review of the evidence for efficacy and safety”,
and note that that review
“should be scrutinised by MPs before…consideration of legalising assisted suicide”.
These are not small details or incidental matters, yet, even at this late stage in the Bill’s passage through the Commons, we are still being asked to pass legislation without satisfactory answers to basic questions from experts in the field. That is simply not good enough.
I am grateful to have had the opportunity to speak, and I will close by saying simply that whatever mitigating amendments may be passed, this Bill remains morally and ethically wrong. It is flawed and should not be passed.
I rise to speak to amendments 8, 13, 82, 83, 85 and 86, but first I turn to amendment 77, which would extend some of the provisions of the Bill to Scotland. My review of the Bills in Scotland and England that are proceeding at the minute suggests that if someone moved permanently from Glasgow to Bradford or Newcastle, they would lose their right to an assisted death in Scotland and would have to wait a year to acquire their right to an assisted death in England. Imagine the heartbreak if somebody was diagnosed as terminally ill three or six months into their permanent move to Newcastle. That is a natural consequence of the law of habitual residence; there is long-standing case law on that. One matter that has not been addressed satisfactorily is how the relationship between Scots and English law and the Scottish and English Bills will be worked out. I suspect that that will require further primary legislation in this place and in Holyrood if both Bills pass.
I turn to the remainder of the amendments. Amendment 13 is very sensible and would introduce much-needed scrutiny and oversight to the appointment of a commissioner. The right hon. Member for Salisbury (John Glen) has set out in detail the very sensible reasons for the introduction of his suite of amendments. Amendment 86 is particularly important, because the panel faces real difficulties in compelling people to come before it if they have relevant evidence. It seems manifestly reasonable that the panel should hear from people who have relevant evidence. I am also concerned that the panel process does not provide a clear role for people who love and care for the person seeking an assisted death. Amendment 8 would require the panel actively to consider hearing from such people, which addresses a serious gap in the Bill.
(1 week, 1 day ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is a pleasure to serve under your chairmanship, Ms Jardine.
I thank the hon. Member for Henley and Thame (Freddie van Mierlo) for securing this important debate on support for people with ADHD, and for sharing the experiences of his constituents in Oxfordshire. I know that the hon. Gentleman and others wrote to the Minister for Care, my hon. Friend the Member for Aberafan Maesteg (Stephen Kinnock) about many of the issues he raised today; I hope he found the Department’s response to that letter useful. I thank other colleagues for their interventions. These issues also affect my own constituents, and I see them in my inbox, so I understand their impact on families and communities.
First, we must be honest about the challenges. The Government inherited a broken NHS with too many patients facing long waits to access services, including ADHD assessments and support. Lord Darzi’s report laid bare that the growth in demand for ADHD assessments nationally has been so significant in recent years that it risks completely overwhelming the scarce resources available. The report also shows that, at current rates, it would take on average eight years to clear the backlog of adult ADHD assessments and that for many trusts the backlog would not be cleared for decades. We absolutely recognise the need to better understand the factors behind the rise in demand for services to ensure that we offer the right support.
The hon. Member for Henley and Thame asked why his trust has closed its waiting list. In preparing for the debate, I asked officials to give me a clearer understanding of what is happening in the Buckinghamshire, Oxfordshire and Berkshire West ICB, which saw a near 50% increase in referrals year on year between 2019 and 2024. I am pleased that the hon. Gentleman has had contact with the chief executive. The trust felt that it could not cope with that level of demand because it viewed it as an unmanageable risk to patient safety and staff wellbeing. That is why it made the difficult decision to close the waiting list for new adult ADHD assessments in February last year. That was the trust’s decision.
As someone who worked in the system over the peak years of austerity—some people may remember them—I completely understand how trusts are often confronted with such decisions. The recent growth in demand seems quite exceptional. Integrated care boards are responsible for commissioning services in line with the health and care needs of the people they serve. It is up to local decision makers to make tough choices, because they know the situation on the ground better than Ministers in Whitehall.
I understand that the ICB has established an ADHD programme steering group to stabilise its services, and it is working with local partners, including people with lived experience, to develop a new service model aimed at addressing health inequalities, providing a single-service model across the ICB, with a single provider, and providing support for people who do not benefit from medication. I understand that the trust is working to open a service for 18 to 25-year-olds as an interim measure to help those who transition from children and young people’s services to adult services, which we know is a difficult time in their lives. I am sure that the hon. Gentleman will maintain a close watch on those commitments.
Following on from the intervention by the hon. Member for North Down (Alex Easton), I know that this is a devolved matter, but the issues are exactly the same in Northern Ireland as in GB, with long waiting lists and a lack of access to services. Does the Minister agree that people with ADHD are being discriminated against right across the United Kingdom because of the lack of access to services? Does she also agree that, in the interim, those who go for a private diagnosis should be able to enter into a shared care arrangement so that they can access the medication that assists them to function day to day, live normal lives and be part of our society?
I will come on to shared care agreements. As the hon. Member says, this is a devolved matter, and I am focusing on support for issues facing ADHD services in England and what we are doing to support trusts to get back on top of waiting lists and improve access to services.
First, NHS England has commissioned an independent ADHD taskforce, which is working to bring together those with lived experience and experts from the NHS, education, charity and justice sectors. The taskforce is developing a better understanding of the challenges affecting those with ADHD, including timely and equal access to services and support. I can confirm today—I know that this will be of interest to many hon. Members—that the taskforce will publish its interim findings shortly, with a final report expected after the summer recess. The interim report will helpfully focus on recommendations that support a needs-based approach, beyond just the health system, in which people can access support based on their needs, not their diagnosis. The report will also set out recommendations for support to be provided beyond medication, and by healthcare professionals other than specialists.
Secondly, NHS England recently published an ADHD data improvement plan to inform future service planning, and on 29 May it published management data on ADHD waiting lists. Thirdly, it has been capturing examples from ICBs that are trialling innovative ways of delivering ADHD services and using that information to support systems to tackle waiting lists and provide support.
Fourthly, as part of the Government’s five long-term missions, we have launched the 10-year plan to deliver the three big shifts that our NHS needs to be fit for the future: from hospital to community, from analogue to digital, and from sickness to prevention. All those shifts are relevant to supporting people in all parts of the country with a range of conditions such as ADHD.
Fifthly, we are supporting innovation. Earlier this year, at a parliamentary event, many of us will have met innovators who are supported by NHS partners. I heard about the QbTest technology that complements the knowledge and skills of clinicians as part of the ADHD assessment process. I understand that 70% of NHS children’s ADHD services already use that technology, and the evidence suggests that it has a positive impact in making the assessment process swifter and simpler.
(4 months, 3 weeks ago)
Commons ChamberIt is mind-blowing that there is no money to pay for winter fuel payments or to support the Women Against State Pension Inequality campaign, yet the House is about to approve the provision of a bottomless pot of money to create a state-funded, gold-plated assisted suicide service.
I agree. We all have our views on the merits of the Bill, but fundamentally we have a duty to our constituents to handle public money properly. In handling that money, we must know how much the Bill will cost. When it comes to that financial statement, it must not be fudged or opaque; it must be absolutely clear and it must—
(6 months, 1 week ago)
Commons ChamberI am sure the Secretary of State will welcome the Northern Ireland ban as well, making this a UK-wide ban.
Going through puberty is a biological and natural way for a boy or girl to develop. Anything that interferes with this process in such an extreme way is going against the natural process. Therefore, I agree with the sentiments about its being a scandal that medicine was being given to vulnerable young people without proof of its being safe or effective. Will the Secretary of State therefore outline what support is available for children and young people who have taken these drugs and bear the scars of these drugs? On the clinical trial, we once again see the NHS being used totally contrary to what it was designed for, which is to protect and preserve life.
I thank the hon. Member for her question. On the cases of young people who have been on a gender identity pathway and later regret those interventions, whatever those interventions may have been, they are small in number, but they are addressed in the Cass review. It is important that we do not lose sight of those young adults and older adults who may well need the support of health services if they feel they were inappropriately placed on a gender identity pathway or undertook medical interventions that they have later come to regret. We will keep that and other evidence under close review.
(6 months, 1 week ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is a pleasure to serve under your chairship, Ms Vaz. I thank the hon. Member for Dulwich and West Norwood (Helen Hayes) for her story on behalf of her dear friend and for leading the debate. We have been very privileged to hear contributions from courageous hon. Ladies to my right and to my left, who have told their own personal stories, which contribute to this debate. It probably also humbles us to have those contributions. Every person who has come here today to make a contribution will have an example of someone they love who has been affected.
Westminster Hall is a great place, as the Chamber would be, to raise awareness and to discuss these matters. I am sure that many will not be fully aware of this insidious brand of cancer, or of its specifics. I am personally grateful to be able to give one example, but also to discuss these issues.
As my party’s health spokesperson, these issues are incredibly important to me. Indeed, they are important to us all; we are all here for the same purpose and it is vital for us all to be here. I know that we will all have had some journey experiencing cancer within our family or close to home. Not long ago, I met in my office a constituent of mine who was diagnosed with lobular breast cancer. I think that, whenever we meet someone who has come through that journey and thankfully is on the other side and alive today, we thank God, as the hon. Member for Maidstone and Malling (Helen Grant) did. Ultimately—I say this respectfully to everyone here —that is where the power lies for healing: with our God.
The hon. Lady explained that there is not enough research into the specifics of this cancer, let alone more access to medication that lessens the impacts of the suffering. Perhaps the Minister will have an opportunity, through civil servants, to check what research and development there is on this specific lobular cancer to help save more lives, make lives better and give people hope for the future. Ultimately, in this House, we are tasked to give hope—not because of our words, because our words are not important—to those out there who face this reality of what the future will hold for them.
Invasive lobular breast cancer is the second most common type of breast cancer. It is also known as invasive lobular carcinoma. Around 15 in every 100 breast cancers are invasive lobular breast cancer. The most recent figures show that, in 2016, 6,765 people were diagnosed with lobular breast cancer in England, including 6,754 women and 11 men. There may be those who think that it is not a disease that can affect men; but although it is a very low number, it still does. My hon. Friend the Member for Wokingham (Clive Jones) is one of those survivors. I think we should thank God that he is here today as well. It is important to note that, although it is less common for men to get this form of cancer, they are still able to get it and it can impact them just the same.
There were 7,566 cases of female breast cancer diagnosed during 2018 and 2022 in Northern Ireland. On average, there were 1,513 cases per year. I want to put the figures and stats on record because they illustrate clearly how critical, dangerous and invasive this cancer can be. In Northern Ireland, the breast cancer incidence rate was 156.7 cases per 100,000 females. The odds of developing female breast cancer before the age of 85 was one in eight. It is clear that there is a major concern in Northern Ireland and throughout this great United Kingdom.
This specific type of cancer often goes undetected, as it spreads in straight lines, as opposed to lumps. Furthermore, although the cancer grows slowly compared with other cancers, the tumours can be large by the time they are detected. In addition, some 3.75 million people will be diagnosed with this cancer in the next 10 years, which is why it is important to discuss it, so I thank the hon. Member for Dulwich and West Norwood for securing this debate.
I associate myself with what we have heard in this very powerful debate. I commend the hon. Member for Dulwich and West Norwood (Helen Hayes), and I commend the family who are sitting in the Gallery. Cancer is a thief in many homes, and I commend them for their bravery.
Does my hon. Friend the Member for Strangford (Jim Shannon) agree that, across the UK, we need more investment, more research and more clinical trials, and that it is for this Government to step into the breach and do just that?
My hon. Friend is right. We are fortunate that Labour has set aside £26.3 billion for the NHS. We have to recognise that commitment, and I hope the Minister will be able to tell us that money will be set aside for the very invasive disease to which my hon. Friend refers.
ILC currently has no specific treatment and, for those who have been diagnosed, it behaves very differently from the more common type of breast cancer. As we look ahead to the next 10 years, it has been great to learn more about the Lobular Moon Shot Project, which has been supported by this Government, the last Government and hundreds of Members. Everyone in this room supports it, everyone in the Gallery supports it, and everyone outside this room supports it too.
The project was set up in 2023, which is fairly recent. At my age, the years go incredibly fast, but 2023 feels like yesterday. The project seeks to lobby the Government to secure the research funding needed to understand the biology of lobular breast cancer. The project has stated that a major research package is estimated to cost some £20 million over five years, but it has not been prioritised as it should have been. I reiterate what the hon. Member for Dulwich and West Norwood said, and I ask that the research is prioritised. The Minister may not be able to tell us about everything that is happening, but we need to hear that commitment.
Some fantastic charities undertake amazing work to support those living with breast cancer, and I have met them both in Westminster and at home in my office, and their work is instrumental in helping people to cope with the physical, mental and emotional side of dealing with a cancer diagnosis. One person will have the cancer, but their family and friends are also affected, as the hon. Lady said.
With this type of cancer, there is a risk of recurrence or spread. Up to 30% of early-stage primary patients will experience spread to their organs, which can be a number of years after the initial diagnosis. This highlights again the need for greater research and funding to ensure early detection and to prevent the cancer’s spread.
The shadow Minister spoke in a debate this morning about research undertaken between Birmingham University, Newcastle University and Queen’s University Belfast. He was talking about rare autoimmune rheumatic diseases, but Queen’s University Belfast has partnerships with other organisations to try to find cures for cancer. Many universities across this great United Kingdom of Great Britain and Northern Ireland are carrying out research, and the Government’s approach to that is vital.
I have gone on a bit longer than I had hoped, but there is more work to be done on researching most cancers. Breast cancer, and specifically lobular breast cancer, impacts the lives of thousands of people every year. It is time to do more as a collective. Today, collectively, Members on both sides of the Chamber are committed to trying to find a cure and trying to find hope for those who have cancer, and who will hopefully survive it, and for their families as well, by undertaking the important research into this awful disease. We are also committed to making men and women across the country aware of the warning signs.
I look to the Minister and her Labour Government, which is my Government—whether you are a Labour person or not, it is our Government and they are trying to do the best they can, and I think they deserve support for their commitment to do so—with sincerity and honesty, perhaps beseechingly, to ensure that the devolved nations are not left behind in terms of a strategy. I look forward to action from the Minister and to her replying to all the requests.
(9 months, 2 weeks ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
I am sorry for being emotional. I know that I should not be. I thank the hon. Gentleman for giving me a chance to recover some of my composure.
Agnes came in tears to ask where the Royal Victoria hospital had buried her son. It meant something to her, even though it was 50 years later—that wee small lady, standing in my office telling me her story, which was breaking her heart 50 years later.
The loss of a baby is life-changing, and my thoughts are with those families who have been mentioned in this debate. There will be others. Other hon. Members will speak, and they will tell the same story with the very same emotion, compassion, understanding and that realness that the hon. Member for Ashfield compounded in such a fantastic way in his introduction.
The fact that baby loss can be preventable makes the outcome that bit more difficult to accept. Sands is a phenomenal charity, and it has given the following statistics. I always give a Northern Ireland perspective simply because I feel it adds to the debate, but it also tells us that the things happening here are no different for us back home. The stillbirth rate declined 17.7% in Northern Ireland between 2010 and 2022. However, comparing the rate over a three-year average shows a smaller reduction of 10.1%. My goodness! Though it is decreasing, it is still there with a vengeance. The neonatal mortality rate has been higher in Northern Ireland than in any other UK nation since 2013. It is equally bad wherever it is, but I am just making the point that Northern Ireland has examples of it that are above the rate anywhere else.
I thank my hon. Friend for his powerful speech. This is certainly a debate that resonates with me on a very personal level, but I want to make mention of a little boy called Teddy from my constituency of Upper Bann, who died from sudden infant death syndrome. He will be forever seven weeks old. Does my hon. Friend agree that we need better wraparound services, particularly in our hospitals, with rooms made available for families who find themselves in these most tragic circumstances? There should be support, counselling and help right through their grief journey.
I thank my hon. Friend and colleague for that intervention. What she says is absolutely true.
I tend to be emotional at the best of times, but whenever someone loses someone, particularly at that time, it resonates with everyone. It is a time when people want to wrap their arms around them, because it is the right thing to do. At the same time, there has to be someone outside. The hon. Member for Ashfield gave some examples where—with respect—people were just sent home when they needed someone. That is so sad. I feel that there should be a greater role for churches and ministers to help and, as best they can, to give succour and support physically, emotionally and mentally. Those are things that we have probably all tried to do.
Unlike stillbirths and neonatal deaths, the total number of miscarriages and miscarriage rates are not reported in Northern Ireland. That needs to change. It is a matter for us back home and not the Minister’s responsibility, because health is devolved, but I do feel that we need to do better. I still feel that the aims in the mainland should be replicated. I know that the Minister is sitting in for another Minister who cannot be here, but maybe it could be conveyed to the responsible Minister that we should look at an overall strategy for the whole United Kingdom of Great Britain and Northern Ireland.
Although there is an ambition in England to halve the 2010 rates of stillbirth, neonatal death, pre-term birth, maternal death and brain injury by 2025, there is no equivalent ambition in Northern Ireland. There really needs to be one; that is one thing that I would love to see. Sands states:
“The Northern Ireland Executive must commit to reducing pregnancy loss and baby deaths and eliminating inequalities. Any future targets must have a clear and agreed baseline to measure progress against.”
It is not just about having a goal; it is about having a goal that means something. With respect, we can have words until the cows come home, but they mean nothing unless they turn into action. Sands further states:
“These targets should be the driving force behind a programme of policy activity, with funding and resources to meet them.”
I agree. The ambition of this debate is to highlight the need for funding and resources, highlight the issue, make people aware and give an outlet to those who have suffered so painfully and who will carry that burden with them all their life. That is what I too am advocating, not simply for England but throughout the whole United Kingdom.
We have midwives who regularly find themselves staying after handover, as they are understaffed. We find exhausted junior doctors being left with full maternity wards while their SOs catch up on the never-ending paperwork. We have cleaning staff telling us that they do not have time to do all they need to clear rooms of infections. All those things are a matter of funding, and they are all UK-wide.
In all parts of this great nation, these are matters of life and death. The death of just one little baby that did not need to happen—we all have examples in mind today—is a tragedy. The number of babies who have died needlessly is not just a tragedy, but a catastrophe. We need to change it. With that in mind, I congratulate the hon. Member for Ashfield on giving us all an opportunity to participate in this debate in a small way, but with united force. Politics aside, we are here as MPs on behalf of our constituents, and we will all say the same thing: the loss of a baby is devastating to a family. If we can do something, we must. Let us support staff and, by doing so, support the health of our mothers and their children.
It is a pleasure to serve under your chairmanship, Mr Dowd. I thank the hon. Member for Ashfield (Lee Anderson) for securing this important debate and for his moving opening speech. My thanks also go to Bliss for the briefing that it provided.
This is an incredibly important debate for me and, I have no doubt, for all of us here today. As some Members will know, I—like many others here today, sadly—have experienced the devastation of baby loss. Having not spoken about my experience of baby loss until 2016, 11 years after I became an MP, I know how difficult this can be to talk about openly. I want to thank all colleagues for being here, some of whom have personal motivations, as we have heard.
I want to tell you a little bit about my daughter Lucy and about my experience of baby loss. My daughter Lucy was born at 23 and a half weeks, and sadly she was stillborn. Her heart beat throughout my labour until just minutes before she was born. The experience of giving birth to a stillborn child is incredibly traumatic, as we have heard and as I have spoken about previously. It feels weird that the world around you is not responding as it would if you had given birth to a live baby. I felt that I made everyone around me, or anyone I met, feel very uncomfortable: it is one of the last taboos, as the hon. Member for Clacton (Nigel Farage) spoke about. No one knows what to say to you when you have lost a baby or given birth to a stillborn baby—it is everyone’s worst nightmare—so I did not talk about it, and I certainly did not tell anyone new to my life who had not known me before I lost Lucy. When I became an MP in 2005, it took me until 2016 to actually talk about it in this place, or to anyone from my post-baby-loss life.
What compounded this grief was the fact that Lucy did not receive a birth or death certificate. Even more upsettingly, in my records it was not recorded as a stillbirth; it was recorded as a miscarriage. Because she was just days away from being 24 weeks, she was three or four days short of the required legal age to be eligible for a death certificate. Because of that, she does not officially exist in any official records other than our own family records.
We did name Lucy during a blessing in a private room, which I was moved to after she was born, when I had to give birth in the maternity ward among all the live babies. She was then taken to the chapel of rest and we held a very small funeral service for her, organised by the chaplain at the hospital and the Co-op, which funded everything. I will be forever grateful for that: it meant a lot at the time and still does. The acknowledgment of Lucy’s existence that they provided us with was truly invaluable, particularly when it had been denied to us by the lack of a death or a birth certificate.
After my experience, I knew things had to change, even though I could not talk about it for a long time. Alongside the former Members Will Quince, Antoinette Sandbach and Victoria Prentis—some of us here will remember Victoria, who left the House at the last election—I became one of the founding members of the all-party parliamentary group on baby loss in 2016. I am pleased that the APPG is still going; I hope it gets reformed. It has become a vehicle for making great progress with regard to baby loss, in particular for securing bereavement suites across the country, improved patient pathways and better recording of data, among many more improvements. Still more are needed, sadly.
I then became one of only two MPs on the pregnancy loss review, alongside our former colleague Tim Loughton, following his private Member’s Bill. The review’s work resulted in significant changes—not least the decision, announced just earlier this year, that parents who lose a baby before 24 weeks of pregnancy in England can now receive a certificate in recognition of their loss. I know that this has been a great source of comfort for many who now feel they can finally get a formal recognition and acknowledgment that their baby existed. I am certain that it would have made a huge difference to me and my family.
I thank the hon. Member for the moving real-life story that she has told. I commend her and her colleagues for their efforts on baby loss certificates. Does she agree that a greater effort needs to be made in the devolved regions—I am thinking of Northern Ireland—to replicate what is happening here in England with baby loss certificates, such is the importance of the issue for families?
I absolutely agree. I only realised that the certificates were just for England when we were pulling together my remarks for today. That is remiss; I encourage the devolved nations to follow the example of England and bring the certificates in, because they really make a massive difference to parents suffering early baby loss.
Despite these improvements, we still have a long way to go to provide the care and respect that all families need during such a difficult time, as well as to ensure that we take steps to reduce stillbirth rates. As expressed by Bliss, an organisation that campaigns for change for babies born premature or sick, there has been a concerning increase in the neonatal mortality rate and the pre-term birth rate. It points to a high variation in care as a factor that can be addressed to reduce that worrying increase.
As the MP for Washington and Gateshead South in the north-east, I know just how damaging the impact of inequality can be as we experience the acute end of regional inequality, which can manifest itself through less investment and less access to the resources we need. In relation to baby loss, inequality prevails and, as Bliss highlights, the number of babies lost to mothers from the most deprived areas has increased at a rate twice that of babies lost to mothers living in the least deprived areas.
It would be remiss of me not to mention that neonatal mortality rates are much higher for babies from an ethnic minority. Babies of black ethnicity are twice as likely to be stillborn as babies of white ethnicity. It is a failure of our healthcare system that babies of black and Asian ethnicity continue to have much higher rates of neonatal mortality. Disgracefully, that disparity is also seen in maternal healthcare. Maternal mortality for black women is currently almost four times higher than for white women. As some Members may have heard, the tennis star Serena Williams has spoken in great detail about her awful experience in that regard. I encourage Members to read her article in Elle magazine, which is still available online. Even as a very wealthy and globally recognised figure, Serena’s voice was dismissed during pregnancy and childbirth.
We must ensure that there is the right training and support for healthcare professionals to ensure that all those terrible disparities are addressed. The cases that we have heard today are so traumatic. Crucially, we must centre the voices of patients—usually mothers, but sometimes their partners as well—and listen to what they are saying about their own bodies and experiences. As we have seen with the high level of disparity in neonatal healthcare outcomes, we will fail to achieve change if we are not listening to those at the heart of this crisis.
If we are to effect change, we must also increase our midwifery workforce, as well as increasing the capacity in our NHS to allow the necessary training to be delivered. I am pleased that Labour is taking strong action to get our NHS back on its feet. In our manifesto, we committed to training thousands more midwives as part of the NHS workforce plan. It is also significant that Labour has said that we will ensure that trusts failing on maternity care are robustly supported into rapid improvement, and we will set an explicit target to close the black and Asian maternal mortality gap.
(9 months, 2 weeks ago)
Commons ChamberI absolutely agree with the hon. Member. My party’s policy is that carer’s leave should be paid. At the moment, we are formalising a system that already worked for people in asking for time off unpaid with the employer’s agreement, and potentially not taking sickness or annual leave. They are not getting remunerated for taking that leave, and I am cognisant of that.
Going back to my evidence on food banks, the research from the sector aligns with that survey data. The Joseph Rowntree Foundation’s 2024 report on UK poverty found that 29% of carers live in poverty. More than half of the carers who responded to the Carers Trust adult carer survey in 2022 said that they are struggling to make ends meet as a result of those caring responsibilities. As the hon. Member just said, one of the main reasons for unpaid carers being in poverty is that it is difficult to stay in work as a carer, especially full-time work.
I commend the hon. Member for securing this excellent debate. Across the United Kingdom, some 60% of carers are women, with many having to give up employment, reduce their hours or take a less qualified job. Does she agree that needs to be a top priority when the Government are looking at this issue?
Yes, I absolutely agree. When we think about pension inequality, we know that women are more likely to be caring and so are unlikely to be able to build up a full pension entitlement, which compounds the poverty that the hon. Member describes.
A 2019 Carers UK report on the difficulties of juggling unpaid care with employment found that around 600 people a day are giving up work. A snapshot from the family resources survey I referred to earlier showed that 22% of adult informal carers were retired and 25% were economically inactive. I am proud to acknowledge that since then we have hopefully seen some improvement in the ability of carers to balance work and caring, having passed my Carer’s Leave Act in 2023, giving employment rights for the very first time to unpaid carers. However, I know from the work that I have done that that is not enough.
One of the reasons for this debate is because there is a Minister in the Department responsible for unpaid carers. The DWP sees the impact of families living in poverty. The Treasury is in charge of the overall picture, but the Department for Business and Trade has responsibility for employment practices. I want to highlight the need, which the Government previously recognised, for cross-Government working on supporting unpaid carers. The one thing that the DWP is responsible for that could help unpaid carers—I would be grateful if the Minister took this away—is carer’s leave. As the Minister knows, I could give a whole speech on how that benefit needs reforming, which would help rather than hinder unpaid carers, but I accept that is not his remit.
(1 year, 6 months ago)
Commons ChamberThe hon. Lady is absolutely right that we need greater awareness. People need to live without that stigma, and they must not be scared to talk about their poo. They need to be able to go to their doctor and discuss this openly, and their doctors need to be able to offer the right care.
Only one in four people are diagnosed before they are 30, thus affecting the most productive years of their lives. Crohn’s and colitis are complicated diseases that follow a relapsing and remitting disease course. We therefore need a benefits and social security system that supports people with these conditions. As the hon. Lady has said, it is also crucial that we raise awareness. People are waiting far too long for a diagnosis of Crohn’s or colitis. Even before the pandemic, one in four people waited a year to be diagnosed, with nearly half ending up in accident and emergency at least once before their diagnosis.
Delays to diagnosis affect people’s ability to continue education and work. They also narrow the treatment options while increasing the risk of being hospitalised. We do not want anybody to feel that they are a burden on the NHS, but there is a greater burden on the NHS when people are diagnosed later and are unable to access that care. Research found that only one in two people had ever heard of these conditions and that even fewer could name the symptoms. To make matters worse, people are not facing up to this, not understanding it, and putting it down to other things. You could say that it is time to talk more crap than we already do. If sufferers struggle to discuss incontinence with health professionals, it can have a profound impact, but these discussions are vital to ensure that people with Crohn’s and colitis receive the support and accommodations they need.
I would like to highlight the work of the SNP-led Scottish Government, who are committed to ensuring that those living with Crohn’s and colitis can access the best possible care and support, and access health services that are safe and effective and that put people at the centre of their care. For example, in March this year the Scottish Government launched an awareness campaign to help increase awareness of Crohn’s and colitis symptoms and to signpost reliable information so that people would feel empowered to seek help from a medical professional when needed. I would be delighted to hear the Minister say that the UK Government will do the same and that they will work across the UK and internationally with those who are leading in the field of research.
Bowel conditions are notoriously difficult to diagnose, so we must remind people that the symptoms of some of these conditions, including IBS, coeliac disease and bowel cancer, can be similar to those of Crohn’s or colitis. It is crucial that those with Crohn’s or colitis have these conversations and get a diagnosis as early as possible. If left untreated and poorly managed, these conditions can cause serious complications that require emergency medical or surgical intervention.
At a recent meeting of the all-party parliamentary group on Crohn’s and colitis, we heard from a sufferer who had had the most horrific experience during covid. She was taken by ambulance after terrible weight loss, and hearing her experience, particularly during covid, brought home to us how awful this can be and how difficult it is for young people, in particular, to face up to something that will be lifelong and debilitating.
Inflammatory bowel disease care is often overlooked and under-resourced. Current resource planning is based on outdated data on the number of people living with these conditions, which we know is twice as many as was previously estimated. One long-serving IBD clinical nurse specialist recently told us how, 18 years ago, her service was supporting 250 patients living with Crohn’s and colitis and is now supporting more than 7,000. That kind of increase is not realistic for our healthcare staff to deal with. Consequently, there is a significant variation in quality of care across the UK. No IBD service currently meets the IBD standards, so we need to work together to improve that.
The Scottish Government will continue to improve services for people with the conditions through modernising the patient pathways programme. It has a specific workstream that is continuing to promote improvements in inflammatory bowel disease care for patients across Scotland, in partnership with the third sector and people with lived experience. Additionally, the Scottish Government are funding gastroenterology specialty groups that lead on research into Crohn’s disease and ulcerative colitis, with a focus on a range of areas, including early diagnosis of these conditions.
We look forward to seeing the results of IBD UK’s benchmarking surveys, which are currently being undertaken. There will be data from over 15,000 patients and 63% of IBD services, and I hope the Government will take that into consideration and give it their very close attention.
As we have discussed, Crohn’s and colitis not only affect the gut; they can affect almost every part of the body and every aspect of life, from digestion, eyes and joints to energy. However, many people tell us that the hardest part of living with these conditions is the prejudice and discrimination that come from living with a hidden disability. The awareness cards that are now available from Crohn’s and Colitis UK and other charities do help, but we need awareness not only from people who suffer from Crohn’s and colitis, but from the public at large. When somebody who does not appear to have a physical impairment uses a disabled toilet, it does not mean that they do not need to use that toilet. Three in four people will experience bowel incontinence, and therefore quick access to a suitable toilet facility is crucial, either to prevent or to act should an accident occur.
The hon. Lady is making a powerful contribution. I believe the Government should undertake work on accessible toilets to help people who have Crohn’s and colitis. In my Upper Bann constituency, we have rolled out a fleet of accessible toilets. Does she agree that this should be mirrored throughout the United Kingdom, and that there should be more focus on the availability of Radar keys for disabled toilets?
I congratulate the hon. Lady on the work that has been done in Upper Bann, and perhaps there are lessons that can be learned by all Governments across the UK. Incontinence can cause considerable anxiety. I often talk to my brother about what is worse now. Although a flare up can be seriously debilitating, the day-to-day anxiety never goes away and is always with those who suffer.
What is more, some Crohn’s and colitis sufferers have stoma bags, meaning that not only do they need to find a toilet, but they need to find one that has enough space for them to change and dispose of equipment comfortably, hygienically and in privacy. There was recently an excellent event in Parliament for International Men’s Day that talked about the need for sanitary bins in men’s toilets, which is incredibly important. Men often suffer from incontinence, and they certainly suffer from Crohn’s and colitis, so making sure that all toilets have such safe and sanitary facilities is crucial. I am not sure whether that would require an Act of Parliament, but it strikes me that it would have support across the House, because the fear of incontinence or being unable to locate a toilet can lead to a breakdown in mental wellbeing and social isolation through people choosing simply not to leave their home. We have all been there. We have all had a sickness, a bug or an upset tummy and either nearly not made it or not made it. Imagine that being your life every single day.
Many living with Crohn’s and colitis will understand, and I hope they will hear, these calls. A key thing we have heard about time and again is the social security system, because less than 3% of people living with Crohn’s and colitis are in receipt of personal independence payment. Four in five are denied the support they need. Words like “battling” and “fighting” are often used to describe the experience of those applying for PIP. I recently spoke to someone who talked about how degrading they felt the system is, and that was somebody who is chronically ill and often cannot leave the house. For them to be scared of going through a system that is supposed to be a safety net is utterly appalling, and I hope the Minister will hear that and talk more about how the social security system can support people with Crohn’s and colitis.
The current benefit system defines disability as a permanent and substantial impairment, or a long-term health condition that is likely to degenerate. Those I have given examples from, those we have taken evidence from and those who will be watching at home tonight—no one can tell me that their condition is not long term. There is little recognition of fluctuating health conditions, and fluctuating health conditions are not just Crohn’s and colitis. There are many other conditions, so we have to have a system that is designed to support all those people.
(1 year, 7 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
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First of all, I thank the hon. Member for Wirral West (Margaret Greenwood) for leading this debate and for setting the scene so very well. It is great to have such debates to remind us of the importance of our NHS to society across the United Kingdom as a whole. This really gives us a wee chance to say thank you. I strongly concur with the comments of others, and as health spokesperson for my party, these issues mean so much to me. It is great to be here to give all our NHS staff across the United Kingdom of Great Britain and Northern Ireland the recognition that they deserve. I thank them.
I commend the NHS staff who work day in, day out to provide for local people. It is fair to say that we have had a tough four years in terms of healthcare, with the pandemic having a devastating impact on day-to-day treatment. More recently, the impacts of covid are ongoing in terms of delays and waiting lists. We will never be able to truly understand the feeling of working in that environment, as Members were able to partake in debates from home. Recognising the sacrifices that our NHS workers made at times, which were unknown and dangerous, is an important reminder of the covid pandemic.
My hon. Friend is making a powerful contribution. He will know all too well that in Northern Ireland our healthcare workers and nurses are the very backbone of our NHS. Does he agree that it is time for the Government to step up and award our healthcare workers and nurses with the pay they deserve, and to stop hiding behind the cloak of there being no Stormont? We know that if Stormont was back up and running in the morning there is not the money to do it. Will he encourage the Minister to take that back to the Government?
I wholeheartedly agree with my hon. Friend and will go on to comment on that shortly. Given the circumstances of our NHS right now, on paper the future does not seem too bright. We have people waiting years for surgery and consulting appointments, people struggling to get appointments with their GPs and, in some cases, people waiting for 12 hours to be seen by a doctor at A&E.
However, we will always remain hopeful for the future of the NHS because of the people who work in it and who truly make it what it is: those who work the extra hour, in many cases without pay, after their shift ends to ensure everything is up to date; those who come into their work on their days off due to short staffing; and those who do not have lunch breaks either, as they are too run off their feet. They are the NHS staff who I know, and they are the NHS staff that my words speak to.
The key to fixing those issues lies within this very building. It is for our Government to make the decision to fund the NHS properly. I have constituents, friends and family members who contact me all the time about the condition of the NHS, especially in terms of funding. My hon. Friend the Member for Upper Bann (Carla Lockhart) is right to make that comment on behalf of the doctors, nurses and NHS staff who do so much.
Only this time last year I went to the picket line in Newtownards, one of the towns in my constituency, as the hon. Member for Wirral West said she did in her introduction to the debate. I joined the picket line because I felt that their request for pay was right, and that we should support them to the utmost of our ability. I hoped that would be the case—again, I look to the Minister for that. It is important that those issues are relayed to parliamentarians so that we can get the full scope of just how much people are struggling with the current rate of pay.
With sufficient funding and recognition of the issues, we can improve and build on our NHS. If we reflect on the NHS from 1948 to now, the enhancements are incredible. Medical technology is always being improved and new medicines are being discovered. Queen’s University Belfast is key to that, through the partnerships it has with business. We are finding more efficient ways of diagnosing diseases. As we look ahead to the next decade, we can expect to see more of those medical advancements as technology is always improving. It is incredible to see how far we have come. This week, Queen’s University Belfast has come forward with a new prostate cancer centre in Northern Ireland, which will be to the fore of finding treatments and the cure for that disease.
The next generations of nurses and doctors are going to feel the impact of our decisions today, so let us make the right ones, right now. We must build bridges and remind ourselves of the compassion that the NHS provides. We have a duty to deliver for the people we represent right across this great nation. They are telling us that currently things are just not good enough. I strongly encourage a regional discussion on the improvement of funding for the NHS so that no nation is left behind, and that, more importantly, all the NHS staff of the United Kingdom and Northern Ireland get paid suitable wages to help them make ends meet. We must ensure that the services are up to scratch to allow them to do their jobs to the best of their ability, as they all wish to do. We wish to support them in that.