Myalgic Encephalomyelitis

Carla Lockhart Excerpts

Wednesday 19th November 2025 Westminster Hall

[Tessa Munt]

Probably most of us have constituents in exactly the same situation. In just over a year, two prevention of future deaths reports have been issued related to severe ME. I have already referred to one of them, regarding the case of Maeve Boothby O’Neill; the other was on the case of Sarah Lewis. Neither report has yet resulted in satisfactory action. The risk of death, specifically from malnutrition, is real and ongoing.

Earlier today I spoke with Dr Binita Kane, a private sector clinician with a special interest in ME and long covid. She told me about the case of a 25-year-old woman, a medical student, who developed severe ME after a viral infection in 2018. The young woman has been in an acute NHS hospital for 17 months with nutritional failure and has deteriorated to the point that palliative care is being instituted. Her family is being prepared for the worst—it is dreadful. She has been disadvantaged not because of the individual clinical decisions, but because she suffers from a condition for which there is no safe or established service model. There have been multiple missed opportunities to prevent her condition progressing to this stage.

Sadly, that young woman is not alone. I have heard of many other cases today, and before today. What is being done to help patients like her? In the foreword to the final delivery plan, the Minister stated that

“tragically avoidable deaths of people with ME/CFS, in England…must become never events.”

However, the plan does not clearly set out what actions the Department will take to guarantee patient safety. No one is being held to account. The plan committed the DHSC and NHS England to

“explore whether a specialised service should be prescribed by the Secretary of State for Health for very severe ME/CFS”.

I hope that the Secretary of State will do the right thing and commission that service, but it is frankly astonishing that the option of leaving this group of patients without specialist NHS care, as they are now, is even on the table.

I ask the Minister to clarify what progress has been made in commissioning such a service. That is not to mention that developing a new service from the ground up is, at best, a medium-term solution. It may take years. It is astonishing that no interim solution has been proposed to ensure that patients with very severe ME, whose lives are at risk right now across the country, do not become tomorrow’s mortality statistics. How many more preventable deaths will it take? I ask the Minister to commit to work with groups such as #ThereForME to rectify the situation immediately, for example by convening a national advisory group to advise in these cases and by undertaking a full review of the lessons learned from ME deaths. Will the Minister clarify what data is being collected to better understand the number of those with ME who are affected by life-threatening complications?

The third area on which I would like to see the Government do much more is accelerating ME research. I spoke earlier about the need for investment in research and improving healthcare. For many patients, biomedical research represents their best hope of regaining their former life, yet the condition has historically received very low levels of research funding from the UK Government.

Based on parliamentary answers and official announcements, I estimate that around £10 million has been invested in ME research over the past 12 years. To put that figure into context, on the current numbers that is about 60p per person living with ME per year. Four times as much was spent on a helicopter for the former Prime Minister as has been spent on ME. We spent £125 million—12 times as much—on a bat tunnel for HS2. We spent £10 billion—about 1,000 times as much—on personal protective equipment that turned out to be unusable. Money talks, and the record of the past decade makes it clear to people with ME that their collective futures have been valued by successive Governments at astonishingly little.

[Carla Lockhart (Upper Bann) (DUP)]

Will the hon. Lady give way?

[Tessa Munt]

Forgive me, but I am going to carry on.

The final delivery plan rightly points to the need to build capacity in ME research, given the small UK research community and very few funded research projects. The University of Edinburgh’s DecodeME project has been a notable exception, recently reporting groundbreaking findings that revealed distinct genetic signals in people living with ME—medical, not psychological. This gives us a solid and compelling foundation for future research. Can the Minister explain what plans are in place for future funding to capitalise on this research? Again, the delivery plan is light on actions to build UK capacity in any research. A consensus recommendation for a post-infectious disease research hub was not funded.

A joint showcase event was held earlier this month by the National Institute for Health and Care Research and the Medical Research Council, with the goal of stimulating research, yet it is not clear whether this will yield tangible results or how its outcomes will be monitored. Again, I ask the Minister what the plan is if, as seems possible, it is not a lack of information holding back capacity, but secure long-term finance to encourage researchers to build a career in the field.

The final delivery plan gestured to HERITAGE and PRIME, which were effectively pre-existing funding announcements. The only genuinely new funding announced through the plan from the National Institute for Health and Care Research for research into repurposed therapies was capped to grants of £200,000. The Government’s response on this issue, including in the letter sent in response to concerns raised by the 72 Lib Dem MPs, tends to be that it is not usual practice to ringfence funds for specific conditions, and that researchers can apply for funding in open competition. Yet historical funding imbalances mean that it is not realistic to expect ME researchers to compete with researchers of diseases that benefit from more advanced research and much stronger institutional capacity.

The UK Government do, in fact, set aside funding for specific conditions when they are considered a strategic priority. Just this June, £50 million of funding was announced for cardiovascular disease research to be awarded through open competition. In 2021, £50 million was committed to research into motor neurone disease. If we can award ringfenced funding through open competition for those conditions, why not ME? To echo a question asked at a recent research showcase event, why is ME not considered a strategic research priority? Can the Minister clarify that?

The fourth and final point on which I would like the Government to go further is support from wider Departments, particularly the Department for Education and the Department for Work and Pensions. Children and young people are uniquely affected by ME. The condition disrupts and can derail key life stages and developmental milestones. Among educational professions, poor understanding of ME contributes to a lack of adjustments, limiting access to education and increasing school absences. The final delivery plan acknowledges the need for access to education and improved life chances among children and young people with ME, but while this is in theory a cross-Government plan, engagement from the Department for Education seems to have been extremely limited. Can the Minister outline what engagement has taken place so far and commit to speaking with colleagues in the Department for Education to ensure that they will engage with the delivery plan moving forward and ensure that children and young people with ME receive appropriate accommodations?

Meanwhile, welfare benefits are the most common issue that constituents with ME raise with me. Many have struggled for years to access the benefits they are entitled to, feeling that they are fighting a system that works against them. Like most people living with disabilities, my constituents are terrified at the prospect of future welfare reforms and losing the support that they have and rely on to meet their basic needs.

Looking at the current situation, I am indebted to a benefits adviser focusing on ME for her summary.

“People with ME face intersectional and compounding barriers when interacting with the Department for Work and Pensions (DWP). These include structural flaws in benefit design, widespread misunderstanding of their conditions, systemic disbelief, inaccessible systems, poor-quality assessment practices, and the cumulative harm of being required to repeatedly prove their illness. The current benefit system and emerging reform agenda both fail to reflect the fluctuating, energy-limiting multisystemic nature of these conditions.

And then, the Universal Credit Act 2025, together with the proposed abolition of the Work Capacity Assessment (WCA) and on-going threats to PIP eligibility, signals a fundamental shift in how disabled people meet entitlement to financial support.”

I am particularly concerned about the proposals to replace the new-style employment and support allowance with a time-limited unemployment insurance and to abolish the work capability assessment. Replacing the new-style ESA would disproportionately harm individuals who are not eligible for means-tested support, for example because their partner works. Among other harms, that would increase the risk of domestic abuse while heightening financial dependence—a particularly pressing concern, given that ME is considerably more prevalent in women.

Abolishing the work capability assessment removes critical safeguards in regulations 29 and 35 of the Employment and Support Allowance Regulations 2013 for those whose health would be seriously harmed by work or work-related activity. Those protections are vital for people with ME, who are at particular risk of harm and long-term health consequences if they push beyond their energy limits.

Time prevents me from providing more detail, but I will conclude my observations by saying that, on the whole, what people with ME want most is to recover their capacity to contribute to their families, their community and wider society. They hate being ill. An appropriate benefits system must acknowledge that and treat them with dignity and fairness. The way to get people with ME and those caring for them back into work is not to take away crucial support, but to invest in helping them to get better.

Many will be watching this debate from home, desperately hoping that we are doing everything we can to build them a better future. They deserve the assurance that the Government are committed to a clear, ambitious and, crucially, properly funded vision for change across healthcare, research and all forms of Government support. I ask the Minister for a meeting to discuss myalgic encephalomyelitis and the way forward for the 1.35 million people affected. I very much hope that today’s debate represents a big step forward in delivering that for them.

Suicide: Reducing the Stigma

Carla Lockhart Excerpts

Wednesday 19th November 2025 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairship, Mr Mundell. I thank the hon. Member for Richmond Park (Sarah Olney) for setting the scene, as she so often does. I know that this issue is very close to her heart; indeed, it is very close to all of us. I will give a couple of examples from Northern Ireland. They are never easy stories to tell, but both of them are solution-based. I will tell them without mentioning any names or specific details, so we can consider what steps we are taking to address the issue.

It is a real pleasure to see the Minister in his place—I wish him well in his role—and, as always, to see the shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans). He and I seem to be tag-teaming all the time on health issues in Westminster Hall and the main Chamber.

When I thought about this issue, and I have given it a lot of thought because it is so real to all of us, I went back and forth in my mind about the title of this debate. The motion refers to “reducing the stigma associated with suicide”. I believe that we need to normalise talking about how we feel. I say that as a man, because men—myself included—seem to have some difficulty in understanding the issues that we face, especially the difficult aspects, relating them to others and acknowledging that we are not alone in having these thoughts. It is important that we recognise that, and that there is help for so many.

The hon. Member for York Outer (Mr Charters) is not here, but anyone who heard his Prime Minister’s question today will know that he lived the story that he told. We need to recognise what suicide truly is. He took us through his experience: he did us proud and did his family proud in how he dealt with the things he faced up to.

When I was first elected to this House back in 2010, the constituency of Strangford took in a new part, Ballynahinch. Around that time—in 2010, 2011 and certainly in 2012—there was a spate of suicides of young men in the area. It was horrendous. It was almost impossible to comprehend what was happening. However, a local Presbyterian minister, Rev. Mairisine Stanfield, galvanised the community in Ballynahinch to come together. What a lady she is! She organised all the churches and the individuals, who were all hurting and all wanted to know what to do. She was the prime mover: she created a hub in the area, which was a brand-new idea that gave young people and others a place to come together, talk about things, relate, socialise and have a chance. Alongside other things that were happening, the hub helped to reduce the suicides in that town, so I have never forgotten Rev. Mairisine. Indeed, I met her last Friday night at the mayor’s do over in Bangor. There she was, as bright as ever and with that wonderful smile. That lady motivated the people of the area, the community groups and others to come together and try to help, so I am always deeply indebted to her.

I remember that when I was younger—this goes back to the title of the debate—a stiff upper lip was expected. That was the demand of the day, but that approach is not helpful attitude to take to mental health. If we look at the cultural climate across most western countries, attitudes were shaped by fear, silence and, in some cases, religious views. This was not spoken about.

[Carla Lockhart (Upper Bann) (DUP)]

My hon. Friend will know that in Northern Ireland there are somewhere in the region of 200 suicides per year, which is deeply troubling and terrible for each family walking that difficult pathway. Online platforms and social media now play a huge part in some of those suicides. Does he agree that this Government need to go further in regard to platforms that are sharing information on how to commit suicide, and that we all need to play a role? Our mental health champion in Northern Ireland has said that by asking someone how they are, we are not likely to make the situation worse. There is a challenge for us all to reach out and ask people how they are, so that we can be more in tune with them and help them through difficult situations.

[Jim Shannon]

I thank my hon. Friend for her words of wisdom. I know that she has tried, before and during her time in this place, to address the issue of online access to information about how to commit suicide. I cannot conceive how that can be available; maybe I am from a different generation, but the availability today is scary. It is not the Minister’s responsibility, but I know that he will give us some ideas on how to tackle that.

People did not talk about mental health in the past. There was no awareness, and psychological conversations were not had day by day in the way they are today. We had a spate of suicides of young men in Newtownards a few years ago, and it was so tragic. There was a wee group of young boys who ran about together. One committed suicide, and unfortunately the other four or five all did the same. It is really difficult, sometimes, to deal with things.

The hon. Member for Ashford (Sojan Joseph) spoke about the suicide rate among farmers. This is not about pointing fingers—I do not want to do that—but I can say from the family farms that I know in Northern Ireland that the pressure on farmers today due to the family inheritance tax is incredibly worrying. I will leave it at that.

While any suicide is devastating, I would like to focus on the stats surrounding male mental health and suicide in Northern Ireland. The Northern Ireland Statistics and Research Agency revealed that there were 171 male suicides registered in Northern Ireland in 2023, which accounted for some 77.4% of all suicides. My goodness me! We men—that includes me and every one of us—need to have a look at how we deal with these things. Males in Northern Ireland are consistently three to four times more likely to die by suicide. It also noted that for males aged 15 to 49, such as those I referred to in Ballynahinch and Newtownards, suicide was the leading cause of death in 2023, followed by drug-related deaths.

Male suicide in Northern Ireland has been a painful and persistent issue for years, and the stigma around it can make things even harder for those who are struggling. The harsh reality is that men do not talk. We tend to be private about our health issues. There is a very strong cultural script back home that we just get on with it; we do not want to come across as weak or unable to cope, which is how we fear it would be perceived. Furthermore, for many men and their families, the pattern is passed down from our parents. To give a Northern Ireland perspective, our dads and grandads who suffered during the troubles were told to be silent at that time and swallow their feelings. Some of them had PTSD—we never knew what that was until the last few years, by the way. That has had a knock-on effect on how we deal with issues now.

We must do more to ensure that talking about mental health is as normal as talking about the weather or the news. That is how we will reduce the stigma. Transparency and openness is the way forward. First and foremost, we must ensure that help is accessible and available in this country. That is our responsibility.

Our mental health services are not where they need to be. More should be done to provide counselling services, as opposed to going to the GP and walking out with a prescription for anti-depressants. With great respect, they are not always the answer. I urge the Minister to tell us how the Government will do more to ensure that those services are properly funded so that we can help more people stop making that final decision, which some feel is the only way forward.

World Stroke Day

Carla Lockhart Excerpts

Tuesday 28th October 2025 Westminster Hall

[Munira Wilson]

I 100% agree. The post-stroke support is critical, and I will share some stories about people who have felt abandoned and isolated in exactly the way that my hon. Friend describes.

Despite guidelines from the National Institute for Health and Care Excellence, the Chartered Society of Physiotherapy says that 20% of people do not receive the minimum specialist rehabilitation required in the first five days following a stroke, and 68% do not have an assessment for rehabilitation, which is required after discharge. The reality is that those who want to regain a level of independence need to be able to fund support privately.

I pay tribute to Richard Sealy, who runs the Neuro Rehab Practice in Hampton, which is in my constituency. He and his whole team are doing brilliant work in trying to fill that gap. Over the summer, I had the privilege of visiting the practice and speaking to stroke survivors and their carers about their experiences. What runs through so many of their stories—I am sure Members will have heard similar—is the cliff edge that people fall off when they leave hospital, and the devastating knock-on impact that can have.

I would like to share some of their testimonies. One stroke survivor said:

“I felt lost, like I had been thrown out of the boat, not knowing what to do or where to find help”.

Another survivor’s family member said:

“Although the NHS took care of her while she was in hospital, we felt that after the six weeks had finished, it was very much goodbye. You’re now on your own”.

Another, when asked what happened when the NHS rehab ended and whether they were given any further options, simply replied, “Nothing.”

Those survivor stories are far from unique, and that is unacceptable. According to the Stroke Association, only 17% of community-based rehab services have appropriate access to each core therapy—physiotherapy, speech and language therapy and occupational therapy. The Right to Rehab campaign argues for the simple idea that rehabilitation should be accessible to everyone who needs it, for as long as they need it.

We know that stroke survivors continue to make incremental improvements over many months, even years, so I welcome the Government’s ambition to rebuild our NHS through transitioning care from hospital to the community, and to improve integration of rehabilitation. While the Government target to reduce stroke and heart attack deaths by a quarter in the next 10 years is also welcome, given the devastating impact that stroke can have and the struggle to recover faced by many, the scope of that target must be widened to also reducing disability.

Take Miriam, a resident of Twickenham, who at just 21 years old suffered a stroke only three months after graduating with a BA in music. After spending four days in hospital without diagnosis or treatment, where she suffered two more strokes, she was unable to play an instrument or even grasp a pencil. She suffered significant challenges, including depression and isolation, but through therapy and determination, she was able to rebuild her life. Miriam is now a neurological music therapist, working with children and adults with learning disabilities, and I believe she is here, watching today’s debate.

Chris Stirling, who suffered a stroke in his 60s, was told by doctors after six months in hospital that he should go into a care home. He left hospital in a wheelchair, unable to shower. Thanks to privately funded neuro physiotherapy and the support of his family, he is now able to play golf, one-handed. Not everyone is as lucky as Chris to have both the means and the family support.

Miriam and Chris’s stories, and the testimonies I shared earlier in my speech, show just how important it is to get both stroke diagnosis and rehabilitation right.

[Carla Lockhart (Upper Bann) (DUP)]

The hon. Member is making a powerful speech. Family friend Hannah Garrity, who is now in her 20s, took her stroke at the age of eight. She was a little girl, who woke up one day and took a severe headache, and out of that, she had a very severe stroke. She is an inspiration. She is now teaching art in schools. She is a Sunday school teacher in her local church, and she gives so much back to society. Would the hon. Member agree that more research is needed, particularly in relation to strokes in young people and children, given the increase in the number of them who are taking strokes?

[Munira Wilson]

Absolutely. I am sure that in stroke, as in so many other areas of medicine, more research would be welcome, particularly into how we can prevent stroke in younger people. It is shocking to hear that a child so young suffered a stroke.

The stories that I have shared today demonstrate the impact that good care and rehab can have on quality of life, regaining independence and restoring people’s identity. The moral, social, health and economic cases for better rehab support are overwhelming. Will the Minister therefore commit to expanding the Government target to cut deaths caused by stroke and heart attack to include reducing disability? With stoke and cardiovascular disease a trailblazer for the modern service framework, what discussions is he having in the Department and with the Treasury to resource implementation and ensure there is a lead in the Department on this area? With 40% of physiotherapists saying that insufficient staffing is leading to their patients experiencing increased levels of pain and ill health, what work is he undertaking to expand the physio workforce? Will he look at ensuring that integrated care boards’ data plans capture and report on performance and rehabilitation, including in relation to populations who are not accessing rehabilitation?

On this World Stroke Day, stroke survivors and their carers are not asking for the impossible: a concrete plan to make stroke rehabilitation accessible across the country, no matter what someone earns or where they live. As the Secretary of State himself said only at the start of this year,

“Whether in the NHS or in social care, we definitely need to do more on rehabilitation, because rehabilitation is often secondary prevention.”—[Official Report, 6 January 2025; Vol. 759, c. 608.]

He was right, and now that needs to be delivered. I look forward to the Minister’s response. I would welcome the opportunity to meet him to discuss these issues alongside patient groups and representatives.

Oral Answers to Questions

Carla Lockhart Excerpts

Tuesday 22nd July 2025 Commons Chamber

[Ashley Dalton]

I thank my hon. Friend for raising this matter. Lily’s story really lays bare the heartbreak that rare diseases can bring and the vital role that early diagnosis can play. I am happy to meet my hon. Friend and Lily’s family. May I suggest that we meet when the UK National Screening Committee has completed its review, so that the Government have received advice on this important matter? We can then discuss that advice together.

[Carla Lockhart (Upper Bann) (DUP)]

In my constituency, there is a little boy called Teddy, who was diagnosed with MLD—one of the most cruel and degenerative diseases, which is now treatable if diagnosed at birth. Teddy was diagnosed too late because there was no screening. He has lost his ability to walk and talk, and he even fights to smile—a battle that no child should ever have to face. The Minister knows that the treatment is now available, yet MLD has not been added to the simple heel-prick screening tests. Will she also agree to meet Teddy’s family when she meets the family mentioned by the hon. Member for Hertford and Stortford (Josh Dean) to discuss this issue? It is too late for Teddy, but for so many other children it is not.

Prostate Cancer Treatment

Carla Lockhart Excerpts

Tuesday 17th June 2025 Commons Chamber

[The Minister for Secondary Care (Karin Smyth)]

I 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.

[Carla Lockhart (Upper Bann) (DUP)]

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?

[Karin Smyth]

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.

Terminally Ill Adults (End of Life) Bill

Carla Lockhart Excerpts

Report stage
Friday 13th June 2025 Commons Chamber

[Lloyd Hatton]

I 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.

[Carla Lockhart (Upper Bann) (DUP)]

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.

[Jim Shannon]

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.

[Carla Lockhart]

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.

[Lizzi Collinge]

Will the hon. Lady give way?

[Carla Lockhart]

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.

[John Grady (Glasgow East) (Lab)]

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.

Attention Deficit Hyperactivity Disorder

Carla Lockhart Excerpts

Tuesday 10th June 2025 Westminster Hall

[The Minister for Secondary Care (Karin Smyth)]

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.

[Carla Lockhart (Upper Bann) (DUP)]

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?

[Karin Smyth]

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.

Terminally Ill Adults (End of Life) Bill (Money)

Carla Lockhart Excerpts

Money resolution
Wednesday 22nd January 2025 Commons Chamber

[Carla Lockhart (Upper Bann) (DUP)]

It 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.

[Jim Allister]

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—

Puberty-suppressing Hormones

Carla Lockhart Excerpts

Wednesday 11th December 2024 Commons Chamber

[Carla Lockhart (Upper Bann) (DUP)]

I 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.

[Wes Streeting]

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.

Lobular Breast Cancer

Carla Lockhart Excerpts

Tuesday 10th December 2024 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

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.

[Carla Lockhart (Upper Bann) (DUP)]

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?

[Jim Shannon]

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.