Rare Cancers Bill (Money)

Jim Shannon Excerpts

Monday 30th June 2025 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

I beg to move,

That, for the purposes of any Act resulting from the Rare Cancers Bill, it is expedient to authorise the payment out of money provided by Parliament of:

(1) any expenditure incurred under or by virtue of the Act by the Secretary of State, and

(2) any increase attributable to the Act in the sums payable under or by virtue of any other Act out of money so provided.

I pay tribute to my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing forward this important Bill. The Government support it, and are committed to making a real difference for patients with rare cancers.

[Jim Shannon (Strangford) (DUP)]

Just a quick one—I had hoped to speak to the Minister before she came to the Dispatch Box. In Northern Ireland, rare cancers account for a quarter of all cancer cases in both men and women. Will there be extra money set aside for Northern Ireland, where health is devolved, to deal with rare cancers? It is not just those who have rare cancers who have to deal with them; their families do, too. I ask that question of the Minister genuinely and respectfully.

[Ashley Dalton]

As the hon. Gentleman said, health is devolved. I am happy to write to him with the details of how we expect this private Member’s Bill to be implemented by the devolved Governments.

Question put and agreed to.

IVF Egg Donation: Young Women

Jim Shannon Excerpts

Thursday 26th June 2025 Westminster Hall

[Jim Shannon (Strangford) (DUP) [R]]

I beg to move,

That this House has considered IVF egg donation in young women.

I thank the Backbench Business Committee for granting this debate on adverts targeting young women for their eggs and attendant consequences. I know that another debate was supposed to be happening here, but unfortunately for the hon. Member who secured that debate, it was not able to take place. That was fortunate for myself and others who have come along today, so I thank the Committee for having offered this slot to us on Tuesday.

It is a pleasure to see the Minister in her place. She always seems to come along to answer questions on health issues, and I thank her for that. It is also a pleasure to see the shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson) and the Liberal Democrat spokesperson, the hon. Member for Chichester (Jess Brown-Fuller), as well as others who have come along to participate.

The issue of adverts for IVF egg donation has been brought to my attention, and we have some people in the Gallery today who have enabled me to prepare this speech—as well as the questions I wish to ask the Minister —in order to highlight this issue and raise awareness. I thank hon. Members for participating in this debate, which could not be more timely, and the Minister for joining us today. I look forward to her response.

This issue is not as widely understood in this House as perhaps it ought to be. When I made representations to the Backbench Business Committee, I was asked what I was trying to achieve. I explained that, and the Committee very kindly offered me the opportunity to have this debate. This issue must be debated. Adverts in public places asking women to donate their eggs for use by others have hugely increased in recent years. They are seen at bus stops, at stalls in university student unions, in shopping centres and on social media sites. It needs to be regularised and there needs to be departmental input into how it happens. There needs to be rules on how it takes place. I hope that my speech will illustrate the clear issues and why they are so important.

All my contributions in this House start in my constituency of Strangford. My constituents have asked me to bring forward this issue, and it has been very kindly supported by others across this United Kingdom of Great Britain and Northern Ireland.

Adverts are not legally required to state the health risks up front, but they should be. This is despite the process for retrieving eggs from a young woman requiring her to be put through the early stages of IVF and an invasive and often painful surgical procedure to remove them. IVF is so important. I read in the paper today about the number of IVF successes, and I welcome that. This is not about stopping IVF treatment. It is not about ensuring that people cannot have babies. Nothing makes our relationships strong like having children. I always think of those who perhaps cannot and who wish they could. IVF gives them an opportunity to do that.

In 2011, the amount a young woman could be compensated for her eggs rose to £750 per cycle. Thirteen years later, in October 2024, following advice from the Human Fertilisation and Embryology Authority, it rose again, this time to £985, with additional expenses payments able to be made in some cases. That shows that there is a cost factor, and payments should be along the lines of cost.

Women as young as 18 can donate their eggs for use by others—either for IVF for older people or for surrogacy —and demand is soaring. According to the HFEA, women can undergo as many as 10 donation rounds—a huge toll on any lady’s body. Later, I will give the price at which fertility clinics sell the eggs on, so hon. Members will see the difference between that and the figure that ladies are given for a cycle of eggs.

In 2024, the Department of Health and Social Care confirmed to me in a letter that it did not undertake an impact assessment before allowing the payments to women for their eggs to rise, nor has it undertaken a long-term study on the effects of egg retrieval on women’s bodies, but I believe it must do so. Clinics do not undertake long-term follow-up checks on donors’ health. Again, I would have thought that that happens, and I am really surprised that it does not. There seems to be no accountability in the process.

Concerningly, between 2021 and 2023, the Scottish Government also targeted women with open adverts for their eggs, and four NHS health boards in Scotland continue to do so as a result of surging demand.

[Tracy Gilbert (Edinburgh North and Leith) (Lab)]

I congratulate the hon. Member on securing this debate. Is he aware that the adverts that the Scottish Government and NHS fertility centres put out do not convey the associated risks, and that some have used disingenuous language? Does he share my concern about those advertising campaigns, and does he believe that they should be immediately stopped?

[Jim Shannon]

I thank the hon. Lady very much for that point. That is the central thrust of this important debate. There do not seem to be any controls, and donation is almost glamourised, so for those in financial need—I will talk about them shortly—it may look too good to be true. It certainly does need regulating, and I thank the hon. Lady for coming along and making that pertinent point. I very much look forward to the Minister’s response on how the Government can regulate things in a constructive, helpful and safe way.

I do not know of any other Government in the world who ask women to donate their eggs for use by others, so why are we doing it here in a way that can undermine women’s health? It does not seem to be regulated in any way, and there do not seem to be any rules. That needs to be changed.

Research from Surrogacy Concern cited HFEA data showing that between 1991 and 2000, there were 736 egg donors aged between 18 and 25. Further research has shown that between 2000 and 2022, there were at least 78 women across the UK aged just 18 who registered to donate their eggs, 283 aged 19, and 468 aged just 20. That gives an indication of the age that this starts, and I will outline some of the reasons why this can have an impact later down the line.

Between 2000 and 2022, the HFEA registered 5,158 new donors across the UK aged 18 to 25 for egg donation. I say all those things because I believe that this is such an important issue, and that we are on the cusp of uncovering a major public scandal in the way egg donation is advertised.

The issue gets worse when we look at the socioeconomic background of the donors. In 2024, the Government confirmed to me that between 2011 and 2020, 4,147 donors came from the three most deprived deciles of the index of multiple deprivation. In stark contrast, there were 3,007 donors from the least deprived deciles. Again, as I will explain, those who may feel pressurised may see donation as a method of income without understanding all the potential side effects. Between 1991 and 2022, 23,522 new British egg donors were registered across the UK by the HFEA—21,020 from England, 1,315 from Scotland, 954 from Wales and 245 from Northern Ireland. In 2022 alone, 1,645 new British donors were registered in the UK.

Campaigners are concerned about the developing societal entitlement to women’s eggs, and that eggs are becoming a tradable commodity. They should not be, but that is the perception—indeed, that is the reality. Eggs for donation need to be of high quality, so only women aged 18 to 35 are targeted by fertility clinics. I believe that a power imbalance is developing between young and old, between poor and rich, and, in many cases, between female and male. The majority of egg donors are also not mothers, raising concerns about the psychological impact of a woman’s own genetic offspring being raised by others, which may only be realised years after donation. There is also a concerning development whereby young women’s bodies seem to be commodified resources to be assessed for the benefit of others. That concerns me greatly.

One London egg centre has an online catalogue—my goodness me—where donors can be searched for by their ethnic background, their hair colour, the colour of their eyes, their height, their skin tone and their educational attainment, raising further concerns about the development of designer babies. In other words, people think, “We’ll pick through this catalogue, and we’ll see which one we’d like to have.” It should never be that way.

Despite women supposedly not being paid for their eggs, donors have reported receiving payment, which the industry terms “compensation”. Originally £750 but now £985, it is paid into their bank accounts directly after egg retrieval, with no expenses claims or receipts needed to be submitted to the clinic. There are no rules. There are no guidelines. There is nothing to follow. Meanwhile, campaigners have seen plenty of examples of payments quoted up front and adverts directly incentivising young women to undergo the procedure for money, raising the likelihood of exploitation; the hon. Member for Edinburgh North and Leith (Tracy Gilbert) made that point very clearly. There is a significant risk to low-income, working-class women and to students. It also stands in stark contrast to expenses payments for British kidney donors, which must be strictly itemised with receipts provided. If that is the way to do it for kidney donors, it is the way to do it for egg donors.

The HFEA claims that egg donors largely state they are undergoing the procedure for altruistic reasons, but we must acknowledge the risk that some young women’s desire to help others, often at a cost to themselves, is being used against them. Eggs are sold in packages for thousands of pounds by egg banks and fertility clinics. The London Egg Bank offers six frozen eggs for sale at £5,500, and the Manchester Fertility clinic offers a package of eight frozen eggs starting from £11,000. That £985 against those prices gives an indication of where the real money is. The majority of British fertility clinics are now owned by private equity firms—again, there is little or no regulation, no rules and no safety measures. Something needs to be in place.

The process of egg donation is gruelling, which is sometimes overlooked. Women must inject hormones in a process known as downregulation, which switches off the pituitary gland in order to stop the ovaries working temporarily and allow the lady’s cycle, in its totality, to be controlled by the clinic. In cases of fresh egg donation to another woman, the donor’s cycle is synchronised with that of the recipient.

The donor then takes follicle-stimulating hormones to overstimulate the ovaries into producing an artificially high number of eggs at the same time. The clinic wants extra eggs, wants the donation to be larger than the lady would normally produce, and the woman then injects human chorionic gonadotropin, or HCG, which helps eggs to mature, ready for retrieval. This maturation mimics the natural process that normally triggers ovulation.

Finally, eggs are collected from the woman using a needle that punctures the vaginal wall and perforates the ovary, gathering fluid from each follicle—the fluid containing the eggs. Donors in the UK have reported that dozens of eggs, and often even more, have been retrieved in just one donation round. One British donor reported 42 eggs being retrieved in one cycle; another reported 46 eggs being retrieved in the next cycle. That stands in stark contrast to the one egg a month that the female body naturally ovulates. I hope that those who are here today will understand that if a lady’s natural ovulation rate is one egg a month, but 42 or 46 eggs are produced and farmed, that is very much going against what the body does naturally, which has a detrimental effect on some people.

Nobody fails to have sympathy for those who struggle to have a child and who therefore embark on fertility treatment. I know quite a number of ladies who have embarked on such treatment, and their joy at having their wee baby is something that words cannot describe. The look of happiness on the faces of the mum and dad is great, as is the fact that the wee child has been born. However, the use of donor eggs has real societal consequences and potentially there can be a very negative long-term physical and psychological impact on young women who donate their eggs.

We must rebalance this conversation to take into account the impact on the young women who undergo these procedures. We need to have regulation; we need to have rules in place. The process needs to be controlled, rather than the matter just being seen from the point of view of those who want access to donor eggs.

We know from the experience of women who underwent forced adoption in mother and baby homes in the 20th century that often it takes years for women to come forward and report harm done to them in the past. Some donors have reported needing hysterectomies as a result of the damage they sustained during egg retrieval. Other donors have said that when they discovered they had genetic diseases, the clinics refused to take further action and put the onus back on the donor themselves to report to the HFEA. Those checks should have been done before donation, not afterwards.

Similarly, donors are not required to undergo enhanced carrier screening, leading to a risk that some genetic diseases might be unknowingly passed on in the donor eggs and ultimately on to the wee baby who will be born. Another donor has reported donating eggs in her early 20s, only to find when she tried to start her own family in her early 30s that she was unable to do so. Other donors report endometriosis and adenomyosis developing after donation. Quite simply, the long-term risks to women’s health from egg donation are unknown and largely unstudied. Today, I am hopefully outlining where the problems are, why regulation is needed and why I believe that the Government need to step in.

Women who have undergone egg retrieval for their own IVF have reported complications and side effects, including sepsis, abscesses, perforated bowels, severe pain during or after retrieval, and even slipping into a coma as a result of developing ovarian hyperstimulation syndrome.

All this risk is borne by young people so that older people can purchase eggs from fertility clinics and egg banks. According to the HFEA, between 1991 and 2022 —some 31 years—44,760 IVF cycles involving donor eggs were made for people aged 40 or over.

Young donors are at higher risk of ovarian hyper- stimulation syndrome because of the higher number of eggs that they have compared with older women. The Royal College of Obstetricians and Gynaecologists has said that as many as 30% of women aged under 30 who undergo egg retrieval may develop ovarian hyperstimulation syndrome. Complications arising from OHSS can kill. That is why there needs to be regulation and consideration of safety as part of the process.

Two women died in England from such complications in 2005-06. In 2023 there were 53 severe or critical cases of OHSS reported to the HFEA. Yet nowhere in the adverts, online or anywhere else are the risks stated, and they should be. Those donating eggs should be aware of the risks. Donors have reported that clinics mention the risks and likely side effects only briefly and not in depth. They should be stated in depth, but they are not. Counselling for donors is offered, but is not mandatory.

We must look at international comparators. I always like to see what has been happening elsewhere. In Germany there is no egg donation at all. German legislation specifically prohibits the “splintering”—that is the word used—of motherhood that egg donation and surrogacy create. In Italy, donors cannot be compensated at all so that women are not incentivised to undergo the procedure because of financial need.

We must also consider the donor-conceived child. Egg and sperm donations are not meant to create more than 10 families. How many times have I read in the press about men who have fathered, through their sperm, perhaps as many as 100-plus children in the United Kingdom and across the world? One day a young boy and girl could meet, marry, and actually be brother and sister. There needs to be a limit, which is 10, but it is clear that some clinics do not have the control that perhaps they should have.

As gamete donation and use rapidly increases, the likelihood of genetic half-siblings across multiple households, often in close geographical proximity to one another, increases. That is what I fear no controls means. Although British clinics must ensure that donor identities can be revealed to children at 18 years of age, many people resident in the UK still travel abroad for IVF, including to jurisdictions where anonymous gametes and sex selection of embryos are legal. That means hundreds, if not thousands, of children are growing up in the United Kingdom of Great Britain and Northern Ireland unable ever to trace their genetic parents.

The evidence is strong enough to call on the Government to raise the minimum age for egg donors to 25, because of the effect it has on those under that age who donate eggs. Secondly, we should ban adverts asking for women to donate eggs—the very thing that the hon. Member for Edinburgh North and Leith referred to and which we are all very aware of. Advertising for surrogate mothers is already banned, so why not ban adverts asking for women to donate eggs? Thirdly, we should end payments to donors to ensure they are not donating because of financial need. In other words, their financial circumstances could put them in a quandary when it comes to doing what they are doing. At a minimum, adverts must state the health risks up front and the minimum donor age must rise. I sincerely hope that the Minister will take the issue back to the Department and that the Government will act quickly to protect and prioritise young women and their health.

--- Later in debate ---

[The Minister for Secondary Care (Karin Smyth)]

It is a pleasure to serve under your chairmanship, Mr Efford. I thank the hon. Member for Strangford (Jim Shannon) for securing this debate on egg donation in young women. He raises a number of important points, which the Government take seriously. I absolutely assure him that there are rules and regulations around egg donation in this country. Hon. Members in this debate have talked about the potential concerns of the long-term impact of egg retrieval, and the potential incentive of the compensation offered for egg donation, particularly for young women on low incomes. I hope to address those points in my remarks.

For people who are struggling to conceive, which may be for a variety of reasons, receiving donor eggs can be life-changing—as we have heard in this debate—and enable them to start a family of their own. Donating eggs should be a purely altruistic act, and choosing to become a donor is a complex decision. In the UK, the average egg donor is between 31 and 32 years of age. That average has remained stable since records began in 1991. Egg donors are typically UK-based, with around 3% of donor eggs imported from abroad. There were around 3,800 IVF cycles using donor eggs in 2023, which is an increase from around 3,600 in 2019. Those donors support around 2,000 to 3,000 people a year who would otherwise not be able to have a baby. I recognise their generosity, although, as my hon. Friend the Member for Newcastle upon Tyne East and Wallsend (Mary Glindon) said, we also recognise that egg donation procedures come with risks, and they should not be undertaken lightly.

The HFEA ensures that licensed fertility clinics are following law and guidance in relation to egg donation. The Government agree with the point made in this debate that young women should be fully informed of any risks when making the decision to donate their eggs, and that clinics must ensure that women are fully informed and supported throughout the egg donation process. It is mandatory for clinics to provide counselling to women before egg donation to ensure that they understand all the potential risks, and legal and social implications, of donation. Donating eggs is generally very safe, and most women do not experience any health problems beyond discomfort during the stimulation of the ovaries and the egg collection procedure.

I do not want to minimise that experience of discomfort, but where women wish to donate eggs, the HFEA and the Government are committed to making it as safe and accessible as possible. In the short term, there is a potential risk of having a reaction to the fertility drugs used for the donation procedure. If that happens, the effects are normally mild, and can include headaches, nausea or feeling bloated. Donors are advised to let their clinic know if they experience any of those side effects.

In some very rare cases, as we have heard, women develop OHSS. It is a serious and potentially fatal reaction to fertility drugs, which happens about a week after eggs have been collected. Fortunately, it is rare, occurring in less than 0.1% of cycles. Because of the serious nature of OHSS, all severe or critical cases must be reported to the HFEA within 24 hours by the patient’s clinic. They are categorised by the HFEA as grade B incidents. A grade B incident involves serious harm to one person, or moderate harm to many. The HFEA’s latest “State of the fertility sector” report found that fewer OHSS incidents were reported in 2023-24, with 53 severe and critical cases reported by UK clinics.

In recent years, there has been widespread interest in donation, and figures show that the number of egg donors is rising. We heard from my hon. Friend the Member for Newcastle upon Tyne East and Wallsend and the Opposition spokesperson, the hon. Member for Sleaford and North Hykeham (Dr Johnson), about the importance of having conversations and asking questions about the long-term impact on women’s health, which is generally an under-researched area. The Government recognise that and would welcome studies in this area. If there is anything I can add to that following this debate, I will follow up with hon. Members on the opportunities for understanding the wider long-term implications for women’s health in this area.

At the public board meeting last year, the HFEA discussed the rates of compensation offered to egg and sperm donors. Since 1 October 2024, egg donors have received £985, which is up from £750. That increase in donor compensation was the first since 2011, and reflects the rise in inflation. The compensation offered to them is intended to reflect their time and the nature of the procedure, rather than being an attempt to monetise donation in the UK.

I want to address some of the points raised by Members to do with the variability of access to fertility services more broadly. Infertility affects one in six women of reproductive age worldwide. It is a serious condition that impacts wider family, relationships and mental health, as we heard from the Liberal Democrat spokes- person, the hon. Member for Chichester (Jess Brown-Fuller). I congratulate her friends, Lottie and Marvin, on the arrival of their child.

This Government expect integrated care boards to commission fertility services in line with the National Institute for Health and Care Excellence guidelines. NICE is currently reviewing the fertility guidelines, and will consider whether the current recommendations for access to NHS-funded treatment are still appropriate. I look forward to the guidelines being published; we will work with integrated care boards to determine how best to improve their local offer and ensure equity of access for affected couples.

[Jim Shannon]

I thank the Minister for her very comprehensive review. I have three quick questions. First, will the Government commit to undertaking a long-term study into the long-term health outcomes of women? That is one of the things I hope to see happen when it comes to egg retrieval. Secondly, will the Government review the safety of offering £985 per donation, which is sometimes said to be compensation? Thirdly—I hope I am not pressing the Minister too hard; I am quite happy for her to come back to us on this—everyone who has participated in the debate has expressed concern about the adverts, so we are keen to hear her thoughts on banning those.

[Karin Smyth]

I have addressed the issue of compensation. It rose in response to inflation, for the first time since 2011. We have no further plans to start a study specifically on health. As I said in my remarks to others, we understand that broader outcomes in women’s health is an under-researched area. Bringing forward trials is the usual response. If we need to add anything else to that, I will make sure we do so, but there are no other plans currently.

Advertising is governed in this country by the Advertising Standards Authority, which issued a joint enforcement notice in 2021 with the HFEA to ensure that fertility clinics and others were aware of the advertising rules and treating customers fairly. I am afraid I cannot comment on Scotland, where I understand there has been a large advertising campaign. That is not in my ken, although it is covered by the HFEA, which is a UK-wide body, so that is a bit of a complication. If there is anything to report back on with regard to Scotland, without me stepping on devolved issues, I will make sure we do so.

I again thank hon. Members for securing the debate and acknowledging the altruism of the women who choose to donate their eggs and help to give others a much longed-for baby. I assure Members that this Government will monitor the issues raised this afternoon. Women’s health and tackling inequalities are central to the priorities that we will take forward in the 10-year plan.

[Jim Shannon]

I thank all Members for their contributions to the debate. The hon. Member for Edinburgh North and Leith (Tracy Gilbert) referred in an intervention to the advertising issue, which is really important. She talked about Scotland, as I did, but there is also advertising elsewhere that needs to be controlled.

The hon. Member for Newcastle upon Tyne East and Wallsend (Mary Glindon) and I had a discussion at some length before the debate today, and the very things that she wants to see, we all wish to see. We all recognise that IVF gives potential mothers the opportunity to have a child; the joy that can bring can never be emphasised enough. However, we must ensure that all the risks involved are known beforehand. She referred in particular to ovarian cancer and egg donation.

The hon. Member for Pendle and Clitheroe (Jonathan Hinder) referred to the issue of compensation. When ladies give eggs as a donation, their reasons for doing so are above board. Whenever eggs are donated for compensation, which is the word that is used, unfortunately it can lead to other things as well.

I also thank the hon. Member for Chichester (Jess Brown-Fuller) for her contribution and for the example she gave, which showed the joy that having a child can bring. She referred to those who donate eggs willingly, without any financial obligations. She also talked about surrogacy, which is a different issue.

I thank the shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), for her contribution. She brings a wealth of knowledge, through her doctorship. I also thank her for outlining all the cases that she did. She gave the example of one of her constituents, which perhaps highlighted what the issues are.

As always, I thank the Minister for taking the time to come along. My request to her is this: whenever we have a chance to look over this debate and check the Hansard report, we might have further questions, so would she be agreeable to coming back to us if we do?

It is very obvious to me that the Government recognise that there are issues that are outstanding and that must be resolved. With that in mind, I again thank all hon. Members, particularly the Minister, for their contributions, and I also thank those in the Public Gallery, who have come along to listen to our contributions today.

Question put and agreed to.

Resolved,

That this House has considered IVF egg donation in young women.

GP Funding: South-west England

Jim Shannon Excerpts

Wednesday 25th June 2025 Westminster Hall

[Martin Wrigley]

Practice managers tell me that that has already happened and they are less funded now than they were last year.

On the changing numbers, each GP was supporting 1,800 patients in 2019 and is supporting 2,400 today, but safe care is often estimated to be closer to 1,400 per GP. So we are overloading GPs with patients. Practices make heroic use of pharmacists, physios and nurse practitioners, but the arithmetic does not add up. Meanwhile, the other part of their funding, the quality and outcomes framework scheme, has faced changes that have negatively impacted primary care. This meant that, nationally, £298 million was redistributed from the QOF into the global sum—we can see how bizarre this funding set-up gets; the names are just weird—and into cardiovascular disease prevention funding. Another £100 million of funding was repurposed but does not put extra capacity into the system. Rather than providing new money to support GPs, this felt to practice managers that the Government had been rearranging the deckchairs.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing this debate. He is right to address this issue—I spoke to him just before his introduction. We have great difficulty across all this United Kingdom of Great Britain and Northern Ireland when it comes to securing GPs for practices. In recent years, I have been trying to ensure, with the health service, that action can be taken regarding the student loans of young medical students, if they give a commitment to remain in a GP practice for a set period of, say, five years. That would enable more GPs to stay in the system. Does he feel that that is something the Minister and the Government should take on board?

[Martin Wrigley]

All those things help, along with things like bringing back nurses’ bursaries. On rearranging the deckchairs, it is no wonder that practice managers described this year’s settlement as unfunded, unsustainable and unsafe.

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?

--- Later in debate ---

[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.

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?

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.

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—

--- Later in debate ---

[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.

--- Later in debate ---

[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.

--- Later in debate ---

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.