Haemochromatosis Screening

Jim Shannon Excerpts

Wednesday 25th June 2025 Commons Chamber

[Torcuil Crichton (Na h-Eileanan an Iar) (Lab)]

I ought to begin with an explanation of what is a very long word. Put simply, haemochromatosis is too much iron in the blood—haemo, blood; chroma, iron; and tosis, too much of it. To save time and the good offices of Hansard, I will refer to it occasionally as HCT in this debate. It is an inherited genetic condition, a disorder often known as the Celtic curse, because it is particularly prevalent in Celtic bloodlines and is common in Wales, Scotland and Northern Ireland. I think it is more probably a Viking phenomenon—an old genetic response to times of famine that we carry into modern times.

Untreated haemochromatosis can lead to several common conditions that we might describe as Scottish diseases of ill health: cirrhosis of the liver, heart disease, arthritis and so on. Once spotted, HCT is easily treated by venesection—another long word—which simply means bloodletting. About 450 ml of blood is taken off the patient at each session to chase down the iron levels in the body to normal levels. Generally haemochromatosis is asymptomatic, and without a test to measure for ferritin levels, it can be easily missed.

I have a bit of knowledge of the bloodletting side of the business, because for the past 17 years, I have been attending the Knutsford ward at the Royal London hospital on a regular basis for venesection. I am grateful to the staff there for the incredible treatment they have given me, including consultants such as Richard Marley. I am also grateful to my younger brother, Donald, who was tested and found he carried the gene in 2008.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman—I am not going to pronounce his constituency, as I would get that all wrong with my Ulster-Scots—for bringing this debate forward. He and I spoke last night about HCT and its prevalence. He is right that it is called the Celtic curse. Some might say that maybe I am a curse on some people. I am sure nobody would come to that conclusion. However, one in 10 people have this disorder, which features strongly among the Northern Irish, the Scots, the Welsh and even Cornish communities —all the Gaelic cousins and people. However, even with that prevalence, screening does not naturally take place and quality of life is impacted for years before someone even goes to their GP. Does the hon. Gentleman not agree that it is unnecessary to live with something that can be easily treated?

[Torcuil Crichton]

The hon. Gentleman’s interventions are always a blessing, never a curse. I have some information of particular interest to his part of the world later in my speech.

I have declared my interest, as I have haemochromatosis, but it is not just my experience, but that of my constituents and the make-up of my constituency in Na h-Eileanan an Iar that have spurred me to secure this debate. It is not all about me.

A groundbreaking DNA study headed by Professor Jim Flett Wilson of Edinburgh University discovered that the Western Isles are a hotspot for haemochromatosis, this genetic mutation that the body at some stage adopted for survival. People are at risk of developing the condition if both their parents have the faulty gene and they inherit one copy from each of them. They will not get haemochromatosis if only one of their parents carries the gene and they only get one copy, but there is a chance they could pass the gene on to their children. If people inherit two copies—that is, both their parents are carriers—they will not necessarily get haemochromatosis. About half of people with two copies of the faulty gene develop the condition, and it is not known exactly why.

What is known is that the Viking genes DNA study by Professor Jim Flett Wilson took DNA samples from islanders in Orkney, Shetland and the Western Isles, and it threw up some amazing discoveries. People wanted to find out if they had Viking heritage, and many sent in swab samples and filled in the questionnaires in sufficient numbers for the scientists to crunch the numbers. I did not do that myself. Feeling Viking by name and by nature, I did not think it necessary.

Analysis of the data, and cross-examination with other gene studies, showed that in Orkney and Shetland, participants in the study had rare and unique cancer genes, which led to them being alerted to their condition. The study saved lives and is credited with doing so. The good news for the Western Isles—for Na h-Eileanan an Iar—is that no rare cancer genes were found. While the results are still being finalised, it is clear that the Western Isles are a hotspot for haemochromatosis and inherited high cholesterol, which can lead to heart disease.

According to Professor Flett Wilson, the numbers in the Western Isles are sufficiently high to justify population-wide screening. For instance, one in 212 people in the south and east of England carry two copies of the faulty gene, as opposed to one in 62 in the Outer Hebrides.

[Torcuil Crichton]

I do indeed agree. Haemochromatosis, although widespread, was not widely known about until very recently, but genetic testing, as well as simple ferritin level tests, will inform many more people. Early intervention is vital to preventing people from developing crippling illnesses which might otherwise be wrongly ascribed to a condition other than haemochromatosis.

It is not just people such as my hon. Friend’s constituent who are affected. In Northern Ireland—or the north of Ireland, depending on how we view our maps—the situation is even more stark than it is in the Western Isles. Among the population of “Ulster Scots”, if I can call them that, there is a one in 123 occurrence of two faulty copies of the gene, which is similar to the incidence in mainland Scotland. The Catholic community in the north-west of Ireland have the highest concentration in the British Isles: one in 54 carry two faulty copies. On the basis of Professor Flett Wilson’s work, we can predict that one in 94 men in the Western Isles will develop HCT, and one in 80 men of north-west Irish ancestry—and the Irish diaspora is present in constituencies in Scotland, in London and across the United Kingdom—may have the condition, perhaps undetected and perhaps mis-diagnosed, and are possibly suffering from the long list of illnesses associated with an iron overload.

In Orkney and Shetland, analysis of the Viking genes study uncovered rare cancers and lives were saved. In my constituency, people who were found to have the HCT gene have been alerted by letter. The figures for the Western Isles do not include people who did not take part in the study, but they constitute a timely warning about the advisability of screening, a procedure that is not expensive. In the Hebrides, it looks as though we should act on the spike in iron overload. Professor Flett Wilson has recommended islands-wide screening for this common blood condition, but I want to go further: I think that everyone in the Western Isles, or Na h-Eileanan an Iar, should be screened for too much iron in their blood, but I think they should also be offered DNA tests across the board to show what other inherited conditions they might have.

[Jim Shannon]

Will the hon. Gentleman give way?

[Torcuil Crichton]

I will.

[Mr Deputy Speaker (Sir Roger Gale)]

Briefly, Mr Shannon.

[Jim Shannon]

I will be brief, Mr Deputy Speaker. I am descended from the Stewarts of the lowlands of Scotland, and I am probably the hon. Gentleman’s Gaelic cousin. This screening needs to be carried out in Northern Ireland as well as Scotland.

[Torcuil Crichton]

I do not disagree with that. Screening would be revolutionary. It would save money for the NHS in the short term and the long term, and, more important, it would save lives and put us two decades ahead of the rest of the world in preventive medicine. It would be transformative for my constituency. It would be radical, but only as radical as plans to offer every baby in the UK whole genome sequencing within a decade, a plan backed by the Health Secretary. Genomics, like these tests, would put us on the front foot in preventive medicine, as the Minister well knows. Of course it would cost money—£650 million is earmarked for the boost to genomics by the Department of Health and Social Care—but a smaller and more defined pilot scheme to lead the way in preventive medicine is to hand with the samples of high levels of HCT in the Western Isles. Given the given the cost per head of screening, it is logical that starting in the places with the highest rate of faulty genes would be the most cost-effective option.

Initially at least, the Bill ought not to go to the national health service. The bill for gene testing in the Western Isles should be part of the community payback for the large-scale wind farm developments that are planned for the islands. There are already negotiations for community benefits, community funds and community shares in the many planned wind farm developments in rural Scotland. The renewables revolution is about saving the planet, but right now the consumer offer is simply to reduce bills. By properly harnessing the wealth of wind, we can not only make communities better off but transform the life chances and health chances of people and their children.

The Viking genes results are not limited to haemochromatosis; they also showed high levels of hypercholesterolaemia in the Western Isles. That is simply inherited high cholesterol —a gene fault—that leaves many islanders, and many of my constituents, with high cholesterol and many with heart conditions, which again could be avoided with predictive medicine and early lifestyle and diet changes.

Care Settings: Right to Maintain Contact

Jim Shannon Excerpts

Tuesday 24th June 2025 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

Thank you for filling in, Ms Butler, and bridging the gap to enable the debate to go ahead. I thank the hon. Member for Liverpool Walton (Dan Carden) for leading today’s debate. As a strong advocate for stability and comfort for young children, I will focus on young children and those unfortunately in care settings. It is important that we do what we can to make their journey through that stage of their life as secure as possible. It is great to be here to speak on that.

I commend the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts) for her comments. She cast her mind back to covid and different circumstances, different times, different regulations, and more controlled ways of caring. We do not criticise the covid regulations, because they were important to have in place, but many people were unable to have the last few minutes with their loved ones, who were very much part of their lives. My mother-in-law passed away at the Ulster hospital on her own. My point is that sometimes circumstances do not allow us to do what we would like to do, and that was one of those circumstances.

I want to give a Northern Ireland perspective in this debate, as I always do. I know the Minister is always keen to try to help us when we put forward our suggestions. As of 31 March 2024, almost 4,000 children and young people were in care in Northern Ireland. I will focus on that and how important it is to get it right for them. That was the highest number recorded since the introduction of the Children (Northern Ireland) Order 1995. It gives us a perspective on a society and young people in particular in Northern Ireland who are under terrible pressure. The figures are absolutely shocking. We must remember that there are many circumstances that can warrant a child being put into care.

Contact within care settings is important to preserve emotional bonds, social interaction and the friendship that biological siblings share. Although they might fight a bit, the fact of the matter is that there is no greater love than that between a brother and a sister, a brother and a brother, a sister and a sister, or whatever it might be. Being removed from a familial setting and placed in a strange and unfamiliar one can be damaging to a child’s cognitive health, which shows why contact is so important for mental stability.

Another worrying trend from Northern Ireland is the fact that there are those with mental health issues who are as young as eight years old—my goodness. Can we visualise that at eight years old, when someone is young and innocent? Yet the pressures on an eight-year-old are so great. That is what is happening in Northern Ireland. That is why the numbers are so large. Consistent contact has also been proven to achieve better long-term outcomes for families and assist with the transition back to a family dynamic.

I know the Minister is always keen to respond to our queries. What opportunity has she had to contact the relevant Minister in Northern Ireland to ascertain what exchange of ideas, policies, strategies or new approaches there might be to ensure that families can transition back to a family dynamic, which is how it should always be, if at all possible? We live in a fractured society; life is not the same as it was when I was a wee boy. I do not think anybody in this Chamber is as old as me, with maybe one exception, but society as I remember it was so different, and today it is even more challenging.

Contact should not be only for parents; it is imperative that sibling contact is looked at and encouraged to create a sense of normality in care. It is not all about the regime, the rules or the conditions of being there; it is about the relationship between siblings and how they can have some normality. An Ofsted study showed that 86% of children in care thought that it was important to keep siblings together—that is a certainty from the young children themselves. I believe in my heart that it is really important. It is not always possible, but we should strive by all means within our power to ensure that children can keep in touch with their siblings.

The reality is that often many siblings have had and remain in minimal contact. It is terribly sad when those who were part of the same family unit are suddenly hundreds of miles apart. Nobody is at fault, I suspect, but if it is possible to keep them together, we should. For example, for siblings who may come from abusive households—sometimes those are the ones I am aware of as an MP—shared experiences can create a more positive healing journey. I fear that if the same situation continues without any stops or changes, it will hinder the healing process for young children. When they grow up to be parents themselves, what happened to them in the past will make them focus on bringing their children up in a certain way as well, so let us get it right the children of today—the parents of tomorrow.

To conclude, I am a supporter of contact, and I recognise what the hon. Member for Liverpool Walton has contributed in starting this debate. I hope that we can do more to prioritise maintaining contact for young children, parents, siblings and extended families. It is crucial for their mental and emotional wellbeing, and ensuring familiarity can go above and beyond in supporting transitions. There is no doubt that care settings can be incredibly challenging environments. For some children, they are never easy, so let us do what we can—we collectively in this room, and the Government, who have a particular opportunity to make a change, and make the process as stress-free as possible.

I look very much to the Minister, as I often do, for further engagement with the devolved institutions. I would appreciate it if she could do that, to ensure that stronger sibling contact can also be maintained. This debate is so important, so well done to the hon. Member for Liverpool Walton for bringing it forward. There might not be a big number of people here today, but that does not reflect the seriousness or importance of this debate. Those of us who have a personal interest in this issue, and all of us as MPs, have an obligation to our constituents who have asked us to make sure that these things are put on the record.

I believe that we have a great responsibility as MPs. We have an opportunity to formulate law and to support the Government in amending the direction in which they may go, to ensure that young people—the children of today; the parents of tomorrow—can lead a good life. If we try to do that as MPs, and as a Government, we will be building a better society and a better place for everyone to live in. That is my ultimate goal, and one I think we all share. It is a big challenge—let us see if we can do it.

Access to GPs

Jim Shannon Excerpts

Monday 23rd June 2025 Commons Chamber

[Alex Easton]

Although the figure in Northern Ireland has recently increased to 57%, the disparity remains worrying. I am confident that every MP aspires to see good access to GP services throughout the UK and to preserve the essential interactions within GP care that are vital to the health and wellbeing of our nation.

GPs are often the first point of contact for medical attention and their role is vital. I commend their comprehensive efforts in tackling acute illnesses, managing chronic diseases and providing preventive care, among other crucial responsibilities. However, as the MP for North Down, I share the concerns of many regarding the growing demand for GP healthcare services and the accessibility of these essential services for my constituents.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Member for North Down (Alex Easton). He is my neighbour and has been my friend for many years. We served in the Assembly before we ever came here. It is a pleasure to see him secure what I understand is his first Adjournment debate; it will be the first of many, no doubt.

Does the hon. Gentleman agree that trust in some GP surgeries has diminished due to the lack of face-to-face contact? While sending photographs and having discussions over the phone suits some working constituents, for others the lack of face-to-face interaction can mean that symptoms are missed that can only be seen face to face. Does he also agree that GP surgeries are struggling due to the lack of support, and that surgeries throughout the UK must be given more help and assistance so that they can thereby provide more access for their patients?

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[Stephen Kinnock]

The hon. Gentleman is right; one challenge we face is that, where we are developing new centres of housing, we are not getting the social infrastructure wrapping around them. We need to use things such as section 106 agreements and the CIL, as he mentioned. That process is not always working—the developers are not always coming forward with real, concrete commitments—so the integrated care boards do not commission because they are not sure that the infrastructure will be there, and we end up in a chicken-and-egg situation. We are working closely with colleagues in the Ministry of Housing, Communities and Local Government to break through some of that and attach stronger strings to the deals being done with developers. We also have the £102 million capital infrastructure scheme for primary care, which will go some way towards addressing the issue, but this is fundamentally about getting much clearer and stronger commitments from developers.

[Jim Shannon]

I thank the Minister for his responses, which have been incredibly helpful. When I think of GP access, I think of two things; the first is Strangford and the villages along the Ards peninsula, where I have lived for most of my life and where I represent. There, the best way of contacting a GP is by phone—that is the nature of the situation there—but one of the things that helps in Newtownards, which is the biggest nucleus of people in the area, is for people to go down to the surgery at 8 o’clock or half-past 8, join the queue and get their appointment there and then. That is another way of trying to access the GP; there is nothing as frustrating as being on the phone from 8 o’clock to half-past 8 or 9 o’clock and not being able to get an appointment. At least when people can see their doctor, they can definitely get one.

[Stephen Kinnock]

We have to have a mixture of access channels. The telephone is very important, as is being able to turn up in person, but we also need to shift more to online booking. I am really pleased that the new contract that we have with GPs is based on an £889 million investment that came with a lot of strings attached around reform. One of those strings is that every GP surgery—in England, at least—must have online booking facilities by 1 October. I hope that will improve access, and will make more space in the reception process for people who cannot use the internet.

We have to ensure that we get the balance right. That is why, as I mentioned, we took decisive action in October 2024. We invested £82 million in the additional roles reimbursement scheme, which was a targeted move to strengthen our frontline services and ease the pressure on practices across the country. That funding has directly supported the recruitment of over 1,700 GPs across England. Those GPs are now in place, helping to increase appointment availability and—most importantly—improving care for thousands of patients who have been struggling to get the help they need when they need it. We have also seen a rise in the number of GPs employed directly by practices over the past 12 months, which is a positive sign that general practice is stabilising and beginning to rebuild capacity on the ground. Together, these developments are making it easier for patients to access care and for practices to deliver it.

Incontinence

Jim Shannon Excerpts

Thursday 19th June 2025 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I welcome you to your place, Sir Roger; it is a pleasure to see you there again. It is a pleasure to speak on this issue as my party’s health spokesperson. I thank the hon. Member for Dudley (Sonia Kumar) for setting the scene so incredibly well.

The Patient and Client Council’s 2020 report “Accessibility and Quality of Continence Services in Northern Ireland”—I always give a perspective from Northern Ireland—estimated that some half a million people in Northern Ireland live with bladder control problems and some quarter of a million with bowel control problems, with many experiencing both. When we remember that Northern Ireland’s population is 1.95 million, it puts that figure into perspective. The National Institute for Health and Care Excellence estimates that 61% of men in the general population experience lower urinary tract symptoms and some 34% of women live with urinary incontinence.

I commend the hon. Member for Dumfries and Galloway (John Cooper) for focusing on prostate cancer. It is one of those things that us menfolk do not wish to think or talk about. He is right: it is probably the wife who says to us when we have a pain somewhere, “Did you go and see the doctor about it?” We most definitely should go and see someone about it.

This debate is about raising awareness. It is not a topic that is openly discussed, as the hon. Member for Dudley referred to, because people often feel uncomfortable discussing their symptoms and problems given the personal nature of the issue—I have to say that I feel a tad uncomfortable as well. As a result, many suffer in silence or wait a long time before discussing their incontinence issues with a healthcare professional. Only 20% of those affected go on to seek treatment, with many maybe not recognising their issues at first.

Continence issues can be a significant contributing factor to social isolation. Whether we like it or not, many people will feel uneasy about these issues, so they will withdraw into themselves and seek to deal with their problems alone, which can prevent them from having a normal life. It is clear that we need to do more to remove any feelings of shame from continence issues, including by having a public conversation.

I am very thankful that my local council, Ards and North Down borough council—I served on Ards council at one time—provides sanitary bins in accessible toilets across the borough, including some male toilets. These bins are part of a wider initiative to make public toilets more inclusive, particularly for individuals experiencing incontinence or with stoma needs. This debate is also about those with stoma needs. I am surprised by how many people I meet who carry a stoma bag. They have managed to deal with that, but it is not easy—it scares the wits out of me, I have to say.

Ards and North Down borough council has upgraded 44 of its accessible toilets with features such as shelves, hooks, mirrors and bins to accommodate stoma care. My council has taken that action already. Additionally, the council is working to address the need for sanitary bins in all public toilets, including male toilets, where they are not currently a legal requirement. Ards and North Down borough council has already done that because it recognises that that is the right thing to do. The council did this at its own cost and on its own initiative—not because it legally had to but because it recognised the need. This helps to address the stigma, but it must be a UK-wide approach and not simply the decision of individual councils. We commend Ards and North Down borough council: it did that because it was the right thing to do, not because it had to do so.

One in five people are affected by these issues, and yet it is a silent topic, so it is good that we are speaking about it today with the compassion, the understanding and the carefulness that it requires. Inadequate management of incontinence can lead to escalating costs due to morbidity and unnecessary hospitalisation; those are the side effects. It is good to see the Minister for Secondary Care in her place, because she always responds helpfully to the questions we ask.

Some 6.5 million adults in the UK suffer with some form of bowel problem, so it is imperative that we do things better. One in 10 children will suffer from continence difficulties, whether it be bed-wetting, daytime wetting, constipation, soiling or difficulties with toilet training. The hon. Member for Chelsea and Fulham (Ben Coleman) referred to that issue, and it cannot be ignored.

Improving catheter care in the community would reduce A&E attendance and hospital admissions, which fits well with two of the Secretary of State’s three shifts: hospital to community and sickness to prevention. Can the Government commit to implementing that in a co-ordinated strategy?

Colleagues have flagged the many changes that are needed, and I know these cannot be made immediately, but it is important that we move forward, that we have this discourse and that we dispel the darkness of shame and shine a light for those who feel isolated in the shadows. Today is the first step in this journey, and I look forward to participating in further journeys.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 17th June 2025 Commons Chamber

[Wes Streeting]

First, on behalf of the NHS I apologise to my hon. Friend’s constituent. That is an intolerable situation, but sadly not rare or exceptional. There is too much of that happening, and a culture of cover-up and covering reputations, rather than being honest with patients about failures. We are changing the culture. Safety is at the heart of the 10-year plan, and I would be delighted to talk to my hon. Friend further about his constituent’s case.

[Jim Shannon (Strangford) (DUP)]

This morning I attended an event about bladder cancer. Bladder cancer is the fifth highest killer in the United Kingdom, and people were anxious to meet the Minister and discuss those matters. Will he agree to meet bladder cancer organisations to take forward their four objectives to make things better for people in the United Kingdom?

[Wes Streeting]

I am sure my hon. Friend the Under-Secretary of State for Health and Social Care (Ashley Dalton), who is the Minister responsible for cancer, would be delighted to meet campaigners, particularly as we put together the national cancer plan. We want to ensure that we capture every type of cancer, and genuinely improve cancer care for everyone in our country.

Prostate Cancer Treatment

Jim Shannon Excerpts

Tuesday 17th June 2025 Commons Chamber

[Dr Huq]

The hon. Member reads my mind about the postcode lottery, which I will come to in my list of questions. I know that my hon. Friend the Minister is very sympathetic and on the right side.

Abiraterone is now a global drug. Half a million men around the world have had transformed outcomes, improved quality of life and extra years spent with loved ones.

[Jim Shannon (Strangford) (DUP)]

Will the hon. Lady give way?

[Dr Huq]

Yes, I will. What an honour to give way to the hon. Member for Strangford (Jim Shannon)!

[Jim Shannon]

I thank the hon. Lady for bringing forward this debate; she is absolutely right to do so, and I congratulate her on that. She may not be aware that abiraterone is not routinely available in Northern Ireland for men with high-risk hormone-sensitive metastatic prostate cancer, unlike in Scotland and Wales. It is primarily approved for men with advanced prostate cancer that has already spread. While it can be accessed through an individual funding request process, it is not a standard first-line treatment option. Does she agree that men in Northern Ireland and right here in England should be able to access treatment that is available in Scotland and Wales?

Terminally Ill Adults (End of Life) Bill

Jim Shannon Excerpts

Report stage
Friday 13th June 2025 Commons Chamber

[Kim Leadbeater]

I have taken legal advice from Government officials to ensure that devolution is respected at every stage in proceedings. Where legislation that affects other jurisdictions needs to be amended, those conversations have already started and will continue.

[Jim Shannon (Strangford) (DUP)]

Will the hon. Lady give way?

[Kim Leadbeater]

No, I am going to make some progress, if that is okay.

The substances that would be used would not be new substances. As we know, assisted dying is available in many other jurisdictions, and there are substances that have been used safely and, in some cases, for many years. Their safety and efficacy has been proven around the world, but they do need to be treated differently, which is the purpose of new clause 13.

[Simon Hoare (North Dorset) (Con)]

Will the hon. Lady give way?

[Jim Shannon]

Will the hon. Lady give way?

[Kim Leadbeater]

I am going to make some progress.

However, it is most likely that these products are already licensed for other purposes. They could well be regulated through the Medicines and Healthcare products Regulatory Agency and within the Human Medicines Regulations 2012 for the purposes of the Bill, but it is important that time is given—

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[Kim Leadbeater]

Given what you have said, Mr Speaker, I will make some progress. [Interruption.] A lot of Members wish to speak today.

I now turn to new clause 14 and amendment 73. The new clause imposes a duty to make regulations prohibiting advertising of services related to voluntary assisted dying. This issue was discussed in Committee, following an amendment tabled by the hon. Member for West Worcestershire (Dame Harriett Baldwin). It was proposed that there should be no advertising of assisted dying services. I agree, and there was a consensus on that in the Committee. There were some issues with the previous amendment’s workability, so I gave a commitment to return to the matter on Report—hence the inclusion of this new clause. Amendment 73 provides that regulations under new clause 14 would be subject to the affirmative procedure, providing parliamentary oversight.

[Jim Shannon]

On the evidential basis, on page 15 of today’s edition of The Times there is a story about a gentleman who was born in South Africa and lives in Australia. He has come to London this week for this particular Bill in order to give his story. He was diagnosed with pancreatic cancer and told he had only two weeks to live: he lived for three years and one month, and he is still living. There is a growing evidential basis. He said that he was never afraid to die, but he says that he is afraid of the process of dying, and the hon. Lady is the initiator of that. Will she acknowledge the evidential basis and the importance of this subject? Does she realise that the evidential basis against this Bill is growing?

[Kim Leadbeater]

I thank the hon. Gentleman for the intervention, although I am not sure that it is relevant to the banning of advertising for assisted dying services, which I will try to stay focused on.

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[Sarah Olney]

I will not, if that is okay.

We were told that it was not practical to produce such an assessment until after Committee stage, as it would be necessary to assess the impact of amendments made in Committee.

The equality impact assessment was finally published five weeks ago. I have to say that I was pretty astounded. It does not recognise that certain groups in this country may have their lives prematurely shortened as a result of this legislation; instead, it concerns itself with the barriers that vulnerable people may face when trying to access assisted dying. I find that astonishing. Did the people who drafted the assessment not hear the speech of the hon. Member for Vauxhall and Camberwell Green (Florence Eshalomi) on Second Reading? She spoke with passion about how the underlying inequalities in access to healthcare experienced by those from black and minority ethnic backgrounds would be exacerbated if the Bill passed unamended. Did they not listen to the oral evidence that Dr Jamilla Hussain gave to the Bill Committee? She talked about her experience of working with racialised communities in Bradford and their fears of being pushed disproportionately towards an assisted dying pathway. Did they not listen to the testimony of Dr Miro Griffiths on the experience and concerns of disabled people—testimony that has been echoed by Baroness Tanni Grey-Thompson and the actress Liz Carr?

I find it inexplicable that the framing of the impact on vulnerable people should be the removal of barriers to accessing assisted dying and not, as it should be, the increased risk to their health and wellbeing that the Bill presents. I am concerned that we are thinking about the impact on vulnerable people solely with reference to those who are suffering a terminal illness with less than six months to live. We are not thinking about the impact on wider society of introducing a concept of lives not being worth living and how that might disproportionately affect our more vulnerable communities.

My new clause 19 and consequential new schedule 2 and amendment 88 seek to ensure that a comprehensive range of statistics are collected about those who seek and receive an assisted death, so that proper and complete monitoring of requests can be carried out. It is imperative that we get the most detailed possible picture of who is requesting an assisted death so that any patterns of disproportionality can be properly detected and addressed.

[Jim Shannon]

What assurances does the Bill give to the families of people with a disability, or those with mental health issues and those who are anorexic? I do not see any. Does the hon. Lady see any assurances for those who want to end their lives but suffer from those ailments?

[Sarah Olney]

I welcome that intervention. I spoke extensively about the Bill’s impact on anorexic people, and I am not satisfied that those concerns have been addressed.

I am pleased to support amendment 21 tabled by my good friend, colleague and constituency neighbour, my hon. Friend the Member for Twickenham (Munira Wilson), which has attracted support from across the House. It would require the Secretary of State to report on the impact that the Act has had on the healthcare available to those with palliative and end-of-life care needs. I am really pleased that the hon. Member for Spen Valley (Kim Leadbeater) has agreed to accept the amendment.

I am also pleased to support amendments 103 and 104 in the name of my other constituency neighbour, my hon. Friend the Member for Wimbledon (Mr Kohler). They seek to make all statutory instruments made under the Act subject to the affirmative procedure rather than the negative procedure. As it stands, the Act will come into force in four years’ time with no further scrutiny by MPs, yet a whole host of issues that have been delegated to the Secretary of State or have not even been considered will need to be legislated for after Royal Assent. As the Bill stands, the only way for Parliament to scrutinise those powers will be to call for a 90-minute debate on a motion that cannot be amended and will be voted on only if the Leader of the Opposition calls for a vote. Making statutory instruments subject to the affirmative procedure rather than the negative procedure would mean that the Secretary of State, whoever that is, can exercise the powers delegated to them only with the approval of Parliament. For an issue as sensitive and profound as assisted dying, I believe that to be an appropriate level of scrutiny.

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It is beginning to feel as if this were a deliberate tactic. “Keep things vague, do not make anything too real or tangible, and do not confront what this will mean day-to-day. Let’s just keep it light. Let’s keep it airy-fairy. Let’s keep it in the cloud of principle and, somehow or another, through benign intervention, good will accrue.” This is too serious an issue in which to place that faith, because it could be misplaced. That relies on us as Members of Parliament not to care—to switch off when we hear the words “secondary legislation”, something that we know can often be dealt with in five or 10 minutes in a Committee room, with 14 or 20 people selected by the Whips and no debate on the Floor of the House. This is not a niche issue for the Hansard Society or the Delegated Powers and Regulatory Reform Committee, and it would be a shame and a stain on this House and this Parliament if we were to nod through a Bill that gives us the idea that Henry VIII is the way to go.

[Jim Shannon]

Will the hon. Gentleman give way?

[Simon Hoare]

I will not; I am very conscious of time.

Madam Deputy Speaker, given that so many right hon. and hon. Members have been constrained in the length of their contributions because of your persistent cough—I say that not as a criticism—and that next week we have a lot of one-line Whips and the following week we have exactly the same, more time really should be given to the Bill. I do wish the Government had taken it on, not as a Government Bill but by finding Government time for Report on the Floor of the House. This is too serious an issue to have as many gaps and lacunae as this Bill has.

The founding fathers of the United States worked on the basis that the vague generalities of the constitution would always be adhered to, and that men and women of goodwill would adhere to it. I am pretty certain that they are now beginning posthumously, with the current incarnation, to wonder whether that is true. We should not be legislating to leave it up to Ministers to define regulations and decide how they come forward. We have Bills that have page after page after page which, when people ask themselves, “What is this all about?”, actually amount to very little. The amendments that have been tabled, and which I support, have been tabled in good faith, but I am afraid to say that, in trying to improve the Bill, they are trying to make a silk purse out of a sow’s ear.

--- Later in debate ---

[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.

Duchenne Muscular Dystrophy

Jim Shannon Excerpts

Thursday 12th June 2025 Commons Chamber

[Chris McDonald]

Yes, I do agree with that very timely intervention. In fact, the slogan of Duchenne UK is “Time is muscle”, and it is absolutely right that every day and every week makes a difference to these boys.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing forward this debate. He and I spoke about it the other day. I have some constituents who have had a brave few years with Duchenne muscular dystrophy. The problem is that the opportunity of this drug has never been there for them, but it needs to be. Up until now in Northern Ireland, Duchenne treatment has included corticosteroids, physical therapy and other supportive therapies, while access to newer treatments, such as vamorolone or givinostat, are being worked on—we in Northern Ireland have not had access to them either. It seems to be almost a postcode lottery. Does he agree that these drugs could give those young boys a life-changing opportunity that they would never have otherwise, and that, with great respect to the Minister, the Government need to move and ensure that they all get these drugs?

[Chris McDonald]

I thank the hon. Member for that intervention. I am very pleased that he has intervened and I think the comment about a postcode lottery is exactly right. I noted, when I looked at the figures, that currently the Belfast health and social care trust is not offering the drug to lads in Northern Ireland, because it is claiming that it will cost £309,000 for 13 patients. That is different from the rest of the country by an order of magnitude, so I would be grateful if the Minister looked very carefully at the situation in Northern Ireland.

Spending Review: Health and Social Care

Jim Shannon Excerpts

Thursday 12th June 2025 Commons Chamber

[Karin Smyth]

My hon. Friend makes an excellent point on mental health, which is of great concern to all Members. He is right that elective care and mental health are measured in different ways, but we are committed to supporting mental health services with 8,500 extra staff. We are making sure in particular that young people in schools are supported. We know that the situation has been terrible for young people in our country, and we will continue to provide that relentless focus.

[Jim Shannon (Strangford) (DUP)]

The Labour Government have committed more money to the NHS, and that has to be welcomed. For that reason, I thank the Minister for her statement today. The Chancellor yesterday announced some £50 million—this does tie in to health—for Casement Park. However, the Government were clear that that was dependent on funding from the Northern Ireland Executive. Does the Minister expect the Northern Ireland Executive to take extra moneys granted to the Northern Ireland Assembly through Barnett consequentials and divert them to a sports stadium? Are the moneys for the NHS ringfenced and protected? If not, how do I look parents in the eye in my constituency of Strangford, when their child cannot receive cutting-edge medical technology because money has to be found for a sports stadium?

[Karin Smyth]

The hon. Gentleman is an experienced parliamentarian, and he understands how the funding settlement for the Department of Health and Social Care is allocated through the Barnett formula to Northern Ireland.

NHS Funding: South-west

Jim Shannon Excerpts

Wednesday 11th June 2025 Westminster Hall

[Steve Darling]

I agree that staff are the NHS’s most important asset and what makes it tick, which my hon. Friend is right to highlight.

[Jim Shannon (Strangford) (DUP)]

I am here to support the hon. Gentleman; I congratulate him on bringing this subject forward for debate. He is right to highlight issues with cancer care. It is the same for us back home: only a third of those referred by GPs begin treatment within the target time. Does he feel that there is money to be saved through the administration in the south-west trust area? If there is, perhaps that could help.

[Steve Darling]

That is very insightful. After being around medics for many years, I know the concern about the increase in managers. Equally, I know that integrated care boards, which I will come on to now, have real challenges with the savings that they are making. There is talk of merging ICBs, including, in the far south-west, a merger in Cornwall and Devon. Both ICBs are relatively challenged, and I fear that it could be a marriage of two bankrupts. Perhaps it would be better to look at a bigger footprint, including Somerset.