Ehlers-Danlos Syndrome and Craniocervical Instability

Jim Shannon Excerpts

Thursday 26th March 2026 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairship, Ms Furniss. I thank the hon. Member for Cannock Chase (Josh Newbury) for leading the debate. In the short time that he has been in Parliament, he has made a name for himself as an assiduous MP who works hard on behalf of his constituents. They should all be very proud of what he does for them. We welcome his speech today, and I wish him well in what he does.

I am also keen to speak in this debate due to my role as the Democratic Unionist party’s health spokesperson. Through that role, I always fight for more funding for the study and research of rare diseases. I have always had an interest in rare diseases, going back to my time in the Assembly—I was an Assembly Member for 12 years—and during all my years here as a Member of Parliament since 2010. There are some ladies in my constituency who have a deep interest in rare diseases. I had discussions with one family in particular just last week.

In Northern Ireland, conditions like Ehlers-Danlos syndrome and related issues, such as craniocervical instability, sit within a wider set of challenges around rare diseases, diagnosis and access to specialist care. The figures for Northern Ireland are limited and, unfortunately, Northern Ireland does not publish detailed prevalence data for EDS or CCI. Those conditions are often underdiagnosed and not consistently coded in health data systems. We have a lot to do in relation to data. Data is one of the things that always comes up when we talk about diseases, especially rare ones, because we need the data to know what the problems are and how to deal with them.

The Minister is certainly earning her money this week—I think this is her third or fourth debate in Westminster Hall. We are privileged to see her in her place, and I look forward to her contribution. She has a good heart, which she expresses through her responses to our questions.

It is estimated that one in 5,000 people have EDS. That suggests that 10,000 to 15,000 people are officially diagnosed, but that is an underestimate. My first question to the Minister is: do we have a better idea of the numbers in relation to EDS, and, if we do not, how can we get them? Furthermore, some 80% to 90% of diagnosed patients are female, as women are more likely to be diagnosed and more likely to present with chronic pain and joint issues. The hon. Members for Cannock Chase and for Truro and Falmouth (Jayne Kirkham) illustrated that with examples from their own constituencies.

One of the most prevalent issues is diagnostic times, because it takes five to 10 years to be diagnosed. Many people will see multiple specialists and they can also initially be misdiagnosed. For example, they might be told that they have fibromyalgia, anxiety or joint hypermobility. Specialist care is important for conditions such as EDS, especially regarding rheumatology, neurology and pain management, for which waiting lists are already extensive. Delayed recognition and treatment of physical symptoms can significantly affect mental wellbeing—the impact on people’s mental wellbeing as their bodies deteriorate cannot be ignored.

Prolonged uncertainty, unmanaged pain and reduced quality of life often contribute to anxiety, depression and wider psychological distress. More must be done to ensure that we do not allow it to get to that stage, and investigations should be carried out in a timely fashion. I ask the Minister, in relation to doctors and their diagnoses, does something need to be done with our GPs, our A&Es, our surgeons and those people who patients interact with first?

This debate highlights the urgent need to do more for those living with complex and often overlooked conditions. Too many patients face long delays, inconsistent pathways and a lack of specialist support. We owe it to patients to ensure that their symptoms are taken seriously, their diagnoses are not delayed and their care is not determined by their postcode. By investing in better data, stronger specialist services and greater awareness, we can move towards a system that delivers timely, fair and effective healthcare for all.

I have one more question for the Minister: she knows that research is incredibly important—it seems to have popped up in every debate that there has been this week. What is being done, through universities and partnerships with medical companies, to ensure that we chase up that cure for EDS and ensure that any patient, wherever they are in the United Kingdom of Great Britain and Northern Ireland, have the care and treatment they want, and have it now?

--- Later in debate ---

[Mrs Hodgson]

I will commit to looking into that for my hon. Friend. Obviously, aftercare for surgery abroad is tricky—not for conditions such as this, but often for beauty related purposes—but I will take that on board and take it back to the Department.

[Jim Shannon]

I apologise if I missed the answer, but I asked about research and how we can create partnerships with universities, which are very keen to do that—Queen’s University Belfast is one example, but there are many others across the United Kingdom—and with medical companies that want to pursue cures, as we all want to see them do. The Minister may not have an answer today, but I would be very happy if she would come back to me, and to all of us, to show that we are pursuing that research opportunity to find the cure and help people if we can.

[Mrs Hodgson]

I did touch on research, but I did not specifically mention universities. I am pleased that the hon. Member got in another plug for the wonderful Queen’s University Belfast—he did that when we were in this Chamber the other day—and I will take his point on board. I thank him for that.

In closing, I return to the people at the heart of this debate: those living with EDS and CCI. Connor, Jo, Rebekah, Carley, Hannah, Stevie and Natasha have been named by their MPs today. They and their testimonies, as we have heard, are just examples of the many more people across the UK and Northern Ireland suffering from these terrible conditions. They are not asking for miracles; they are asking for clarity, consistency, safe care and to be treated with respect. They are asking for a system that joins up around them, rather than leaving them to piece it together alone. That is a reasonable ask, and one that we should meet.

Again, I thank my hon. Friend the Member for Cannock Chase for securing this very important debate. I look forward to working with NHS partners, clinicians and patient groups to ensure that people living with these complex conditions receive the timely, safe and compassionate support and care that they deserve.

NHS Continuing Healthcare

Jim Shannon Excerpts

Wednesday 25th March 2026 Westminster Hall

[Ayoub Khan (Birmingham Perry Barr) (Ind)]

I beg to move,

That this House has considered NHS continuing healthcare.

It is a privilege to serve under your chairship, Mrs Harris. The continuing healthcare—CHC—system should represent the very best of our national health service, offering 24-hour, round-the-clock care for approximately 50,000 of the country’s most vulnerable adults, but at the moment the reality is quite the opposite, exposing some of the system’s innermost failures.

For those who may be unaware, continuing healthcare is a package of care arranged and fully funded by the NHS for adults with significant ongoing health needs. Crucially, eligibility is based not on diagnosis, but on whether a person has a “primary health need”. If they qualify, the NHS covers all their care costs; if they do not, they are left to navigate a complex and means-tested social care system, often at catastrophic personal cost to their carers and family.

CHC was created to protect those with the most severe and complex needs, but today it often does the opposite: it confuses, delays and denies. CHC is a lifeline for people with the most complex, severe and often life-limiting conditions, making it all the more crippling when funding is stripped at short notice without a clear reason, and yet there is a body of evidence, which is growing year on year, to suggest that the system is unfair, inconsistent and often inaccessible to those who need it most.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman for bringing this debate forward. I spoke to him beforehand, as I always try to be helpful in my contributions. He may only now be aware that in 2023, the High Court in Northern Ireland determined that the previous Northern Ireland continuing healthcare policy breached obligations regarding equality for older people—some of the very things that he is referring to. As a result, the Department of Health in Northern Ireland is in the process of reviewing and developing new, fairer guidance. Does he agree that, UK-wide, this must be tailored care, with an understanding that one size simply cannot fit all?

[Ayoub Khan]

I totally agree about the need for parity of service across the United Kingdom. That must be not only the right thing, but the only thing to do.

A recent report from the Nuffield Trust describes CHC as an “all or nothing” affair for applicants that creates a cliff edge between carers getting full NHS funding and paying out of pocket to care for loved ones. But although chance certainly plays a role in determining who gets funding and who does not, there is also a sinister practice at play—one that violates the very principles of our health service and inflicts unnecessary hardship on families across the country. That is the ever more common practice of revoking funding, and making vulnerable people appeal and fight for the right to retain the funding they should have had all along. We see the same pattern emerging with benefit claimants and home-to-school transport for 16 to 18-year-olds with special educational needs and disabilities. In the vast majority of cases, after all the time and energy wasted by applicants and assessors, the decision is overturned.

Endometriosis Services

Jim Shannon Excerpts

Tuesday 24th March 2026 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is obviously a pleasure to serve under your chairship, Mr Dowd. I thank the hon. Member for Ipswich (Jack Abbott) for leading today’s debate on this crucial issue. Support for women’s gynaecology services is so important. I know from speaking to many ladies, and indeed nurses, back home in Northern Ireland that endometriosis services in particular are suffering drastically. The conversation about that must be had now. It is a conversation that has been had a few times in Westminster Hall, as well as on the Floor of the House through questions.

It is a pleasure to see the Minister in her place. She is earning her money today, as this is the second debate she has responded to. It is a genuine pleasure. I know the Minister has pursued this topic over a number of years as an MP, but now she has the opportunity to respond to the requests from the hon. Member for Ipswich and from me, and I look forward to her response.

Endometriosis is a chronic and often debilitating condition affecting around one in 10 women of reproductive age, yet it remains widely underdiagnosed and clinically misunderstood. In Northern Ireland, many women face long waiting times for diagnosis and treatment, limited access to specialist services, and significant pressures within gynaecology pathways. As a result of all that, patients often endure years of pain and uncertainty, as well as disruption to their daily lives, work, education and family life in general.

I have spoken with numerous young people about this over the years, and have personal experience of it from the women in my life. When my wife and I got married, the doctor told Sandra that, “If you have a baby quickly, everything will clear up.” Well, no it did not—and three babies later, it still had not cleared up. I am not better than anybody else, but I have some knowledge of what it is like for a woman to deal with that every day.

[Sorcha Eastwood (Lagan Valley) (Alliance)]

I really value the hon. Member’s contribution, which has been heartfelt and personal. Does he agree that Endo Warriors Northern Ireland deserves credit and acknowledgment for the work that it has done for the women across Northern Ireland who are impacted by this postcode lottery?

[Jim Shannon]

The hon. Lady speaks well, on behalf of not only her own constituents but all constituents and ladies across Northern Ireland.

My mother also had various problems with endometriosis over the years, and one of my staff members—a young girl who got married just over a year ago—has had what were probably the worst problems with endometriosis that I had ever seen. Obviously, as her employer, I tried to be as sympathetic as I could so that she could have a few days off work, as she had to go to hospital and for appointments—it was endless. We always encouraged her to get married, and she met the right fella and did so. We hope that the situation will change for her.

The personal experiences of women show the huge, wide-scale issues around birth control. At as young an age as 14 or 15, girls are often prescribed birth control to deal with painful periods, as the hon. Member for Lagan Valley (Sorcha Eastwood) will be aware, given her intervention. The issues often slip under the radar without further investigation, meaning that the same women find themselves worse than ever in their mid-20’s, with undiagnosed endometriosis alongside possible fertility issues, of which the hon. Member for Ipswich gave some examples. Given that conditions such as endometriosis are so widely known to be underdiagnosed at the earlier stages, it is beyond me why more has not been done to ensure that the problems are investigated as early as possible. That shortfall for us in Northern Ireland, and what I suspect is the shortfall everywhere across this United Kingdom of Great Britain and Northern Ireland, needs to be addressed.

We also see issues around the waiting lists, in the indeterminable wait to try to find out what is wrong, and to get surgical treatment for it. The waiting time in Northern Ireland is 18 months. That forces women to use their savings or money that they do not have to go private, as living with the condition is described as unbearable—I know just how unbearable it was for the young lady on my staff, my wife and my mother.

[Jayne Kirkham (Truro and Falmouth) (Lab/Co-op)]

I understand exactly what the hon. Member is saying about the waits; the average waiting time for a diagnosis has now gone up to nine years and four months. Where I am from in Cornwall, an endo café has been set up. I went to it once, and it was heartbreaking to be told so many stories about waits for surgeries and diagnoses. One issue that they raised was that we have only one specialist endometriosis nurse in Cornwall. Does the hon. Member think that having more specialist nurses would help?

[Jim Shannon]

My friend and colleague, the hon. Member for North Down (Alex Easton), referred to that earlier in the debate. The hon. Lady underlines that point strongly, for which I thank her.

The situation in Northern Ireland is dire—in Northern Ireland, we use that word to describe many such services that are just not up to scratch. Specialist pathways and centres are more developed in other parts of the United Kingdom; although I was very sorry to hear from the hon. Lady that it is now a nine-year waiting time—is that correct?

[Jayne Kirkham]

indicated assent.

[Jim Shannon]

My goodness—that is quite unbelievable. We tend to find that the situation on the mainland is better than back home in Northern Ireland. I fear that Northern Ireland has fallen far behind, and that little consideration is being given to the impact that that is having. The capital funding from the Department of Health in Northern Ireland does not go far enough to accommodate everything that we need. How many more women must suffer for how many more years before the scale of the issue is realised?

It is my duty, not only as my party’s spokesperson for health but because of my personal experiences over the years, to represent such issues as endometriosis services. It is no secret that more must be done: more engagement, more research and more resourcing. I look to the Minister and ask about the research being done—I will make a request similar to the one I made to her in the debate we had on sudden unexplained death in childhood this morning. Some advances are taking place, but it is questionable whether they will be expedited quickly enough to catch up everyone. I also strongly but politely ask the Minister to discuss the issue with Mike Nesbitt—the Northern Ireland Executive Minister who holds the health portfolio—in the hope that this time next year, in Endometriosis Action Month, we can come together again and that the situation will be better for all those thousands of women across the United Kingdom of Great Britain and Northern Ireland who deserve better treatment.

Sudden Unexpected Death in Childhood

Jim Shannon Excerpts

Tuesday 24th March 2026 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairship, Sir John. I thank the hon. Member for Rossendale and Darwen (Andy MacNae) for raising this issue and pay tribute to him for his bravery in exposing his own devastating grief at the loss of his precious daughter to try to bring about the change in research and support that is so desperately needed.

This is an incredibly difficult subject; indeed, it is often whispered about, if it is spoken of at all. SUDC is a tragedy that strikes without warning, leaving families across our communities in a state of profound, unanswered grief. Over the years, I have met too many families whose joy has gone, and my heart aches for them as well.

In Northern Ireland, we pride ourselves on our close-knit communities, our resilience and our ability to respond to things in a family way. However, when a family faces SUDC, that resilience is tested by the unique pain caused by having no answers. Unlike sudden infant death syndrome, which affects babies under one year old, SUDC claims the lives of children aged from one to 18.

I will look at the reality at home and, as I always do, give a Northern Ireland perspective. According to recent data from the Lullaby Trust, although the number of children who die is small, the impact is immeasurable and is felt not only by the parents and siblings but by the extended family, in schools and churches, and throughout the community. When that stone hits the water, the ripples go far.

In 2023, 16 unexpected deaths of babies and young children were recorded in Northern Ireland. While thorough investigations may eventually find explanations for many of those, those that remain unexplained leave a permanent void. Northern Ireland has historically seen the highest infant mortality rate in the United Kingdom, and it is currently at 4.2 deaths per 1,000 live births. The trends are quite worrying. Although SUDC is distinct from infant mortality, those figures highlight the broader, urgent need to prioritise child health and research in Northern Ireland.

For children aged one to four, SUDC is one of the leading causes of death across the United Kingdom, often ranking higher than traffic accidents or fire, yet it remains one of the most under-recognised medical tragedies of our time. When we ask the Minister for help, that is what we are asking about.

[Carla Lockhart]

Will my hon. Friend join me in commending Dr Julie Rankin, a consultant in emergency medicine, who has been instrumental in working with the Williamson family from my constituency to create a bereavement suite in Craigavon Area hospital in memory of those little children who have died suddenly in unexplained circumstances? As we speak today, they are actually at a research event at Queen’s University Belfast, which demonstrates that Northern Ireland is advancing these things for families who are impacted.

[Jim Shannon]

My hon. Friend is absolutely right. She and I, and probably everyone else in the Chamber, would recognise the importance of parents having someone there to comfort them when such an awful tragedy takes place, and it is vital that my hon. Friend underlined that. One of my three asks of the Minister—which I will come to shortly—will be for research, and Queen’s University is to the fore on that.

For a child aged one to four, SUDC is one of the leading causes of death across the United Kingdom, yet it remains one of the most under-recognised medical tragedies. That is really the point I want to make: this is a medical tragedy and we are not doing enough, so we need to do more, as I think everybody has said.

The unexplained nature of these deaths is perhaps the cruellest part. Families go to wake their child for school or for a day of play, only to find the unthinkable. The Northern Ireland Statistics and Research Agency continues to track these tragedies, noting that they can affect any family, regardless of background.

But we are not here today simply to acknowledge or indeed to remember; we are here to advocate for change. When he set the scene, the hon. Member for Rossendale and Darwen was very clear about what he wanted, which is probably what we all want. First, we need more research, and that is one of my three asks of the Minister. I am very pleased to see her in her place; it has been a pleasure to work alongside her on many subjects over the years we have been here, and I wish her well—I wished her well last time and I wish her well again—in the role she plays. We need more research in order to move beyond the unexplained and find the “why” of the problem. Secondly, we need better support for families navigating the complex joint agency response that follows a sudden death. Thirdly, we need something that today’s debate will help to raise: awareness.

Those are my three asks, so that no parent in Glasgow, Newtownards, Swansea or Somerset feels that they are the only one in the world that this has happened to. We owe it to the children we have lost and to the families they have left behind—[Interruption.]

[Lincoln Jopp]

Will the hon. Member give way?

[Jim Shannon]

indicated assent.

[Lincoln Jopp]

As ever, the hon. Member is making an incredibly powerful speech. I know he feels these things incredibly strongly. I am sure we are all looking forward to his closing remarks.

[Sir John Hayes (in the Chair)]

Jim, why don’t you bring your remarks to a conclusion?

[Jim Shannon]

I will do that. Let us work together to make sure every child has the chance to grow up, and every family has the answers they deserve. While we do not mourn as those do who have no hope, I always treasure the fact that Jesus wept with Mary in her grief, even though he had a plan. God has a plan; sometimes we do not understand what it is, but we have to trust. So we weep together and we hold on to the hope we have. Today, we express our determination to do more for those grieving in our families, in our towns and in our great nation of the United Kingdom of Great Britain and Northern Ireland.

[Sir John Hayes (in the Chair)]

I call Michelle Welsh. Michelle, I want to start the winding-up speeches at around 10.30 am.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)]

It is a pleasure to serve under your chairmanship, Sir John. I thank my hon. Friend the Member for Rossendale and Darwen (Andy MacNae) for securing a debate on such an important issue. I am grateful to him for opening the debate during SUDC Awareness Month, a time dedicated to remembering children who have died suddenly and without explanation.

I also thank my hon. Friend for sharing Frankie’s story; it was profoundly moving to hear about it, as it was to hear all the contributions this morning. I want to acknowledge the courage of Frankie’s family in turning such devastating loss into a call for understanding and change. Frankie was clearly a much-loved little boy, as are all the children who are lost to SUDC, and no family should have to live with unanswered questions about why their child died. I am grateful to Frankie’s grandfather and SUDC UK for their determination in making sure that unexplained never means unexamined. I recognise the importance of the leadership, co-ordination and clarity that they are asking for.

It is important to me that we strengthen our understanding of SUDC and ensure that families can access the right support when they need it. This Government set out an ambitious commitment to raise the healthiest generation of children ever. To achieve that, we must ensure that families receive the best support and advice on all matters relating to child health, including SUDC.

I thank all hon. Members for their powerful and moving speeches and interventions today. I turn to some of the specific issues raised. I recognise the calls from a number of Members for a national plan. That is why we are strengthening pathology services, ensuring high-quality bereavement support and a growing research base. As that works progresses, we will continue listening to families, clinicians and researchers about where further improvements are needed.

My hon. Friend the Member for Doncaster Central (Sally Jameson) asked me about bereavement leave, and made a very strong case. I will commit to raising that with Department for Business and Trade Ministers as a priority. I will also raise the issue of police and paramedic training, which my hon. Friend the Member for Altrincham and Sale West (Mr Rand) raised, with the relevant Departments and Ministers. Both my hon. Friends raised very important issues.

My hon. Friend the Member for Warrington South (Sarah Hall) asked about the implementation of the recommendations in the paediatric and perinatal pathology workforce report. I will write to her on that, and on the four points she called for in particular.

I thank my hon. Friend the Member for Rossendale and Darwen for highlighting that information on SUDC was taken down from the NHS website. Parents who have lost a child to SUDC should be able to access the advice and support that they need. I have already asked my officials to investigate that and explore opportunities to include signposting on the NHS website.

No family should ever have to experience the loss of a child, as so many of us in this Chamber today have. It is vital all of us have access to compassionate and timely support when the worst happens. The child death review process ensures that every child’s death is understood sensitively and thoroughly, and is vital in helping families to understand what happened to their child. While bereavement support is commissioned locally to reflect the needs of each community, there is clear national best practice that sets out that every bereaved family should have a key worker to guide them through a time of inconceivable loss and heartbreak. That key worker helps to provide clarity, information and kindness, and helps families to access further sources of support where needed. We also encourage anyone seeking help to contact their GP, who can also guide them to appropriate services.

I also want to thank some of the wonderful organisations and charities across the country, such as SUDC UK, the Lullaby Trust, Cruse Bereavement Support and the Good Grief Trust, which provide exceptional support to families experiencing this devastating loss. Alongside that, the National Bereavement Alliance has published updated voluntary service standards to support continuous improvement in the quality of care. Putting the needs of children and their families first is at the heart of everything I will do in my role as a Minister. We will continue working with partners to ensure that bereaved families receive the compassion and support they deserve.

As we have heard today in detail, pathology waiting times can add to the distress experienced by families at a critical time when they need answers quickly. As was highlighted by the hon. Member for Mid Sussex (Alison Bennett), who speaks for the Liberal Democrats, there is a nationwide shortage of paediatric pathologists in England and Wales, which can affect the time taken to complete pathology testing following a coronial post-mortem. To address that, NHS England has launched a national programme to strengthen perinatal and paediatric pathology services. The Government have made more than £2 million-worth of additional funding available to increase post-mortem capacity. That has increased training posts and the number of trainee doctors and new pathologists.

Alongside that, genomic testing for SUDC is available through the NHS genomic medicine service. Decisions about whether genomic testing is appropriate are made after the post-mortem and through careful discussions with specialist multidisciplinary teams. NHS England closely monitors how genomic testing is delivered across the country, so that it can spot where services differ and work with local teams to improve services. That helps to ensure families can benefit from high-quality, consistent services where they live. Taken together, these steps will help to ensure that families receive timely, high-quality investigations at moments of profound difficulty, while supporting the workforce who deliver this critical service.

As hon. Members have said, SUDC remains an under-researched area, and I agree that we must do more to deepen our understanding. The Government remain open to funding high-quality research into SUDC through the National Institute for Health and Care Research, and we welcome applications on any aspect of child health, including SUDC.

For example, I thank my hon. Friend the Member for Rossendale and Darwen for raising the great work of Bristol University in hosting the national child mortality database and child mortality analysis unit. The Government’s support for the national child mortality database has already made a meaningful difference by bringing together national-level data on all child deaths in England and allowing a far greater understanding of deaths in children over the age of one.

I am encouraged to see that, building on that foundation, the University of Bristol has secured funding from SUDC UK for the Pioneer SUDC study. This will help to shape future research questions and contribute to deeper learning in this under-explored area. As this growing body of evidence develops, it will allow experts to identify where research can have the greatest impact and where gaps remain, including in areas such as febrile seizures. I thank my hon. Friend for raising that area today, because it is definitely one we need to look at.

[Jim Shannon]

On research, I will make a plea for Queen’s University Belfast, as I always do in such debates, because it does incredible work. It is not the only university that does so; many universities across this United Kingdom do so as well. Will the Minister engage with Queen’s University Belfast and other universities to ensure that the necessary research can be achieved and thereby save lives?

[Mrs Hodgson]

Yes. I thank the hon. Member for his very moving speech; he often moves me to tears in moments such as this. I will take that away, and ask my officials to look at the work of Queen’s University Belfast, because he makes a very important point.

The shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), made a couple of points. I will write to her on the Government’s responses to recommendations, because it is a valid point and one that we should be aware of in future. On the point about ICBs making services more effective by cutting duplication and making sure we have the right people in the right places to deliver quality services, that is something I will also be paying particular attention to, as the Minister with responsibility for children’s health.

Tobacco and Vapes Bill

Jim Shannon Excerpts

Consideration of Lords amendments
Monday 23rd March 2026 Commons Chamber

[Mrs Hodgson]

Before I address Lords amendment 1, I would like to take this opportunity to pay tribute to my predecessor, my hon. Friend the Member for West Lancashire (Ashley Dalton), for her work on the Bill and the wider prevention agenda. I also extend my thanks to Baroness Merron for her work in the other place, ensuring that the Bill was expertly steered through the legislative process.

This is a landmark Bill, and I am honoured to have taken on responsibility for it as the House considers the amendments made in the other place. Creating a smoke-free generation is the most significant public health intervention since the ban on smoking in public places in 2007, under the last Labour Government. Tobacco claims around 80,000 lives every year, and in England it is responsible for a quarter of all cancer deaths. Someone is admitted to hospital almost every minute as a result of smoking, and up to two-thirds of deaths among current smokers can be attributed directly to smoking. Those are not abstract figures; they represent lives cut short by an entirely preventable harm.

The Bill also takes decisive action to tackle the rapid rise in the use of vapes and other nicotine products, particularly among young people, protecting a new generation from nicotine addiction. All the amendments to be considered today have been accepted by the Government, starting with Lords amendments 1, 2, 39 and 40, which change the parliamentary procedure for age verification regulations from negative to affirmative in England and Wales, and in Northern Ireland. The regulations will set out how retailers may ensure compliance when verifying a customer’s age. The changes were made as a result of a recommendation from the Delegated Powers and Regulatory Reform Committee, which the Government accept.

[Jim Shannon (Strangford) (DUP)]

rose—

--- Later in debate ---

[Mrs Hodgson]

I have always wanted to give way to the hon. Member for Strangford (Jim Shannon).

[Jim Shannon]

Well done, Minister—it has been a joy to see the hon. Lady’s elevation to the position she now holds, and I wish her well. Is she aware that Lord Dodds, a DUP Member of the other House, continued to push for changes to age verification in the Bill, and that my party’s primary motivation for the amendments was retailer protection? Without strict parliamentary scrutiny of age verification rules, small businesses will face disproportionate burdens compared with large supermarkets, and the moving age restriction, which rises by one year every year, makes manual verification increasingly difficult for shopkeepers over time. Has the Minister had the opportunity to address that issue, as it concerns many people?

[Mrs Hodgson]

We do not intend to place undue burdens on retailers. Indeed, it should be easier because there is one only date that anyone will have to remember when verifying somebody’s age, which is 1 January 2029. It should be a lot easier as nobody has to do any complicated arithmetic in their head any more. I thank the hon. Gentleman for his intervention.

Lords amendments 3 and 4 provide a narrow exemption to the Bill’s ban on vape vending machines, allowing them to be used in adult mental health settings in England and Wales, and only in areas “wholly or mainly” for patients. That aims to support adult in-patients who may face limits on accessing vaping products used to manage nicotine addiction. The Government remain committed to the wider ban on vending machines, to prevent children and young people from being able to bypass age restrictions on vapes and nicotine products. However, we are aware that adults with long-term mental health conditions have a much higher smoking prevalence than the general population, and ensuring that adult in-patients are able to access vapes from vending machines supports smoking cessation.

Lords amendments 6, 7, 9 to 18, 20, 25, 27, 29 to 31, and 92 to 102 relate to the creation of a licensing scheme in England, and allow for the licensing authority to enforce the future scheme in addition to trading standards. The change was made in response to feedback from local government stakeholders that such a measure would strengthen the scheme and help it to be managed more efficiently following its introduction. Lords amendments 21 to 24 and 28 allow the proceeds from the £2,500 fixed penalty notice for licensing offences in England and Wales to be retained by local authorities for enforcement purposes. The Bill previously required them to be returned to the consolidated fund after costs were deducted. That aligns with the Bill’s approach to allow local authorities to retain proceeds from the £200 fixed penalty notices. Local authorities will be able to reinvest proceeds into strengthening enforcement of the Bill, and help to tackle the illicit market.

GP Contract

Jim Shannon Excerpts

Monday 16th March 2026 Commons Chamber

[Stephen Kinnock]

My hon. Friend is right: avoiding preventable admissions is right at the heart of what we are trying to achieve. Of course, we have challenges with delayed discharge—something like 14% of patients in hospital beds are medically fit for discharge—and if we look at the flow of patients through hospital, we see that we can address a lot of the problems at that end of the process by preventing avoidable admissions in the first place. The advice and guidance element of the contract is therefore very important, because it is by improving co-ordination and teamwork between primary care and secondary care that we will ensure that the 1.3 million people who would have ended up on the electives waiting list or going into outpatient clinics no longer need to be there—they will be dealt with by the teamwork between consultant specialists and GPs. They will be helped, supported and cared for close to home, without having to go into hospital, which will have a positive knock-on effect right through the system.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister very much for his positive answers, and I thank the Minister and the Government for the giant steps they are taking to improve the NHS; we are encouraged by that. While the Government have rolled out major changes to the GP contract in England to improve access to same-day appointments, the situation in Northern Ireland, as he will know, is critical. Patients back home are struggling to get GP appointments, waiting times are long and workforce shortages are acute.

I know from past questions that the Minister has a good working relationship with Mike Nesbitt, the Health Minister in the Northern Ireland Assembly. What discussions has he had with the Department of Health in Northern Ireland to ensure that local GP services in Northern Ireland work in parallel with the new guidance in England so that patients are not left behind?

[Stephen Kinnock]

I thank the hon. Member for his kind words about the Government’s work. I do have an excellent relationship with the Minister in Northern Ireland. Devolution is vital to the Government, and we are certainly not in the business of trying to micromanage what is happening both across the regions of England and in the devolved nations of our United Kingdom, but it is clear that there should be learning in both directions. When I speak to the Northern Ireland Minister, we are clear that we want to see the best possible performance and outcomes right across our United Kingdom. I look forward to continuing to work with him on that basis.

Disability Equipment Provision

Jim Shannon Excerpts

Wednesday 11th March 2026 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is again a pleasure to serve under your chairship, Mr Betts—it has been a long afternoon for you and for me. We have been here together all this time.

I thank the hon. Gentleman for Aberdeenshire North and Moray East (Seamus Logan) for leading the debate. Debates in Westminster Hall give us a chance to recollect things that we sometimes forget about. The hon. Gentleman bringing this issue forward has, all of a sudden, flooded our minds with examples from the last year of our constituents’ needs.

I hope the Minister will know that I will give a Northern Ireland perspective of where we are, to add flavour to the debate and highlight some of the problems that we have. Provision of disability equipment is of paramount importance to many disabled people across the United Kingdom. When equipment works well, it can significantly improve independence and quality of life. The Northern Ireland Statistics and Research Agency has concluded that, according to the 2021 census data, 24.3% of the population of Northern Ireland—almost quarter, or some 463,000 people—had a long-term health condition or disability that limited day-to-day activities. I regularly see those people in my office back home. The hon. Gentleman for Aberdeenshire North and Moray East reminded me of the particular problems that we have.

A significant majority of people will require adaptations and equipment to help support them. It is crucial that they have access to the support that they need. The hon. Member for West Dorset (Edward Morello) mentioned equipment that is unused because someone passes away or they have to go into a home. That includes disabled beds, commodes, walking frames, crutches and sometimes even stairlifts. Stairlifts are there for people to get up to their bed and they might still be workable. If they are compatible and useable, they should be collected. It is not just a problem in the hon. Gentleman’s constituency, but a problem in mine as well.

I want to make a wee plea for wheelchairs. Many of the people who come into my office have acute, complex and severe disabilities. They need a modern wheelchair. I am not being critical—it is never my form to be so—but the ordinary wheelchair was probably okay years ago when it was just a matter of getting about. Today, for people to have a decent life, they need to have a wheelchair that is compatible, workable and gives them freedom.

I know the Government cannot fund it all, but many people have crowdfunded or have done charity drives to acquire those wheelchairs. I am going to age myself with this example, but when I was younger my first pair of glasses were what they called the Milky Bar Kid glasses; they were the round ones, and I can well remember them. We progressed on from that and, to be fair to the Government, they will keep that progress going. People deserve to have a quality of glasses that they are happy with and can relax with, and the same applies for wheelchairs.

My office is contacted weekly, or even daily now, by constituents who are awaiting occupational therapist assessments to adapt their homes to their needs. Most recently, people have been waiting for up to a year for assessments, and for further years for works to be carried out. I am sure that it is the same on the mainland, including in Scotland.

We dealt with a recent case where a constituent’s occupational therapist had done the assessment and said that her bathroom was in no way suitable for her needs. To make it accessible, they needed to take the bath out, put a shower in, put a stool in the shower and make the doors wide enough—I am not smarter than anybody else, but I am involved with these cases regularly, so I understand fairly quickly what people need.

The lady is in pain daily and is struggling to do the bare minimum, from showering to using the toilet. After two years, she heard from her contractors last Friday—this is a fresh story—who agreed the plans, got things measured up and said that they would see her the next week. They were due back at 8 am yesterday to commence the work, but they never showed up. I understand that making adaptations for disabilities is not always a profitable job for contractors, but if they commit to something, they should turn up and do it, for goodness’ sake. I am not one to blame anyone, as issues arise and priorities shift, but there must be a level of accountability for the completion of works.

Furthermore, we must take the extra step to ensure that in businesses and work places, adaptations for those who are disabled are prioritised. For example, businesses across the United Kingdom have automatic doors for people who are disabled and in wheelchairs. They are not just a convenience but a vital accessibility feature that ensures that all customers, including those with disabilities, can enter and navigate premises safely and independently. That is just a small point, but it is one that I have noticed, as have Members across this Chamber, I am sure. Automatic doors support people using wheelchairs or mobility aids, as well as parents with pushchairs, and they create a more inclusive environment that meets both legal accessibility standards and modern expectations of equal access.

These are all things we should talk about, but it is all well and good for us to talk about it. I understand the issues; we are here not to criticise the Minister or the Government, but to try to find a constructive and helpful way forward. More often than not, funding is the critical issue. I would gently suggest that the Government need to ensure that physical support can be accessed, and the reasons for the delays must be tackled at their root cause. I believe that the UK Government, and the Minister, will collaborate closely with the Northern Ireland Executive to tackle backlogs for assessments for disability equipment by co-ordinating funding, and by streamlining procurement, which is also important—if the Government buy 10,000 disability beds to distribute across all the United Kingdom, there must be a better way of doing that procurement. Again, I am trying to be helpful with that. I am sure that they will also share best practices.

I thank you again, Mr Betts, for your patience and for your chairship—you have done incredibly well.

[Mr Clive Betts (in the Chair)]

We now move on to the Front Benchers. The Liberal Democrat and Opposition spokespeople will have five minutes, and the Minister will have 10. There is a bit of flexibility on that time, so we can be a little more generous if required.

Adult Cerebral Palsy: National Service Specification

Jim Shannon Excerpts

Tuesday 10th March 2026 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman for securing this debate, and I thank him for sharing his personal story. That personal knowledge adds to the debate.

Studies by Queen’s University Belfast indicates that adults with cerebral palsy often struggle to navigate adult health and rehabilitation services after moving on from paediatric services. That can limit their access to physiotherapy, occupational therapy, speech and language therapy, orthopaedics and neurology. Does he agree that the best way to navigate this issue is to establish a clear, co-ordinated transition pathway from paediatric to adult services, with dedicated case management so that nobody is left behind when it comes to their care?

[Daniel Francis]

I absolutely agree. Between the APPG’s 2022 recommendations and the example the hon. Member gave of the analysis in Northern Ireland, it is clear that the evidence is there, and hopefully we will hear from the Minister about how we can continue to progress some of those matters.

I would welcome a commitment from ICBs across the country to implement the framework as a blueprint for adult cerebral palsy commissioning and provision, as the hon. Member outlined.

The 2022 report’s second recommendation highlighted the need to support GPs in identifying adults with cerebral palsy by extending the UK-wide quality and outcomes framework to incorporate the creation of general practice-level cerebral palsy registers along the lines of the expansion of the QOF to learning disabilities. That would make a profound difference in the health outcomes of children with cerebral palsy when they transition into adulthood care pathways. Would the Minister look to extend the quality and outcomes framework to incorporate the creation of general practice-level cerebral palsy registers, similar to the expansion of the quality and outcomes framework to learning disabilities?

The third recommendation aims to ease the transition into adult care pathways through a national service specification for adults with cerebral palsy in the NHS, which must include training covering adults with cerebral palsy for those working in general medicine, general practice and nursing from entry level. For many adults with cerebral palsy, their primary co-ordinator of care is their GP, who, despite their best efforts, often does not have the specialist knowledge or training to support their patients.

Written evidence submitted to the APPG as part of the report highlighted that medical undergraduate students do not receive training about cerebral palsy in adults. One way to support GPs in identifying adults with cerebral palsy is to extend the UK-wide quality and outcomes framework to incorporate the creation of general practice-level cerebral palsy registers along the lines of the expansion of the quality and outcomes framework to learning disabilities. That would make a profound difference in the health outcomes of children with cerebral palsy when they transition into adulthood care pathways. Would the Minister outline how the current NHS staffing guidelines could be amended to include the incorporation of training for those in general medicine, general practice and nursing from an entry level to cover adults with cerebral palsy?

The report’s fourth recommendation outlined that each ICB should be required to undertake a gap analysis of existing cerebral palsy services for adults against NICE guidance and use the results to inform and guide their local commissioning decisions. This must include investment in services to support and address associated conditions. The results should then be used to establish regional multidisciplinary cerebral palsy clinics for adults, providing access to a range of psychological, physical and complementary therapies. The recommendation highlights that disability access co-ordinators appointed in both acute and primary centres would be able to provide referrals to the clinics and ensure that reasonable adjustments are made.

The report also highlighted that the provision of a neurologist during the transition from childhood to adulthood is an essential component of adult cerebral palsy care to ensure that, when a patient is discharged from their paediatrician, they do not face that cliff edge in support. Will the Minister agree to investigate how ICBs can undertake a gap analysis of existing cerebral palsy services for adults against current NICE guidance, and how they can include adults with cerebral palsy in their integrated needs assessments?

The report’s fifth recommendation suggests that, to ensure the provision of specialist services, the Department of Health and Social Care should provide ringfenced funding to ICBs to enable them to develop the much-needed specialist services at a local level. Will the Minister agree to look at ringfencing funding for the 42 ICBs so that they can develop specialist cerebral palsy services?

Finally, I want to demonstrate why national service specification is so needed. Emma Livingstone, the co-founder and chief executive officer of UP, The Adult Cerebral Palsy Movement, is in the Public Gallery, and her lived experience perfectly encapsulates why national service specification for adults with cerebral palsy is needed. Emma was diagnosed with cerebral palsy at two years old. At 16, she was discharged from medical services after being told that she was the best that she would ever be.

Unfortunately, without any integrated care during Emma’s adulthood, she experienced a significant decline in mobility in her late 30s. That led to Emma having multiple surgeries, and unfortunately having to give up her work as a speech and language therapist. In Emma’s own words,

“In my late thirties, my mobility declined rapidly. I needed hip surgery, then more surgeries, and eventually had to give up work. What shocked me wasn’t the physical deterioration—it was the silence. The coordinated care I’d received as a child simply vanished when I turned 18.”

Emma is sadly not alone in experiencing that. The APPG report found that

“the transition into adolescence and adulthood is often accompanied by a decline in physical function,”

with up to 50%

“of people with Cerebral Palsy experiencing deterioration in walking function between 20 and 40 years of age.”

That statistic alone is reason enough to show why national service specification for adult cerebral palsy in the NHS is so greatly needed.

I would welcome the Minister’s response to the five recommendations from the APPG report that I have highlighted today.

Funeral Directors: Regulation

Jim Shannon Excerpts

Monday 9th March 2026 Commons Chamber

[Dame Caroline Dinenage (Gosport) (Con)]

I am afraid that it will be a rather morbid debate this evening. We spend remarkably little time in our lives thinking about the practicalities of death, and it is probably part of human nature that we do not dwell too much on the inevitable future fate that awaits us. That means we put far too much implicit trust in those who take responsibility for our bodies, and in those of our loved ones when we die. We all assume that in death we will be treated with respect and care by professionals, but his evening I am afraid I will share some hard truths about the gruesome reality of death. I warn anyone watching that what I have to say will be graphic and distressing—there in no way around that.

Last year, Gosport residents and funeral directors Richard Elkin and Hayley Bell were found to have kept 46 bodies entrusted to their care in a completely inappropriate environment with an unregulated temperature. Describing entering the place to see his mother, one of my constituents said,

“the awful smell is something that will never leave me”.

Concerns about what was going on behind the doors of Elkin and Bell funeral directors were first raised by local residents, and then by the senior coroner at Queen Alexandra Hospital in Portsmouth. A body had been sent for a post-mortem that was

“laying in pools of bodily fluids”

and infested with maggots. The post-mortem also found that the deceased individual had suffered a spinal fracture after death.

After a Gosport borough council environmental health investigation raised concerns but took no further action, a few months later, simply because bills had not been paid, bailiffs attended the property, where two bodies were discovered, putrefying, in a room with bloodstained floors, water dripping from the ceiling, and broken windows. One of them was an elderly gentleman who had been left for 36 days. His body was found in a badly decomposed condition. It is too much of a cliché to compare this to a horror movie, because this is real life, or real death. When the family of one of the deceased was contacted, they were surprised, because they were under the impression that their loved one had already been cremated. The company had certainly taken payment for it.

As the Minister will know, it was completely legal for Elkin and Bell to keep dead bodies in a room like that. Elkin and Bell could only be brought to justice by some incredibly diligent work by Hampshire police, the Crown Prosecution Service, and John Price KC, using a variety of different offences including fraud, forgery and a piece of common law that dates back to Victorian times. The crime of preventing lawful and decent burial was dusted off from the days when it was used to convict grave robbers. That is instead of what should have been possible, which was sentencing the pair because they had wilfully neglected bodies in their care, and treated people’s loved ones as nothing more than money spinners.

The case highlighted that the funeral sector is nothing better than a wild west. When this was first brought to my attention, I was incredulous and horrified to learn that there is no regulation of any kind governing the sector. In fact, the only law that governs the funeral industry is around the financial transparency of funeral plans, and that was put in place after a Competitions and Markets Authority investigation in 2021. There are simply no mandatory qualifications, no accreditation, no licensing, no designated working practices or formal inspection and, crucially, no law to fall back on when things go wrong.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Member for Gosport (Dame Caroline Dinenage) for securing the debate. She is right to raise this issue. In Northern Ireland, we are fortunate to have a number of funeral directors of long standing who have impeccable reputations and integrity. However, funeral directors in Northern Ireland as a whole are not regulated either. Trade bodies such as the National Association of Funeral Directors and the National Society of Allied and Independent Funeral Directors require members to follow codes of practice, but many operate without that oversight, although those who provide prepaid funeral plans are regulated by the Financial Conduct Authority. Does the hon. Lady agree that more must be done to protect the general public and instil confidence in a regulated system? That is the way forward.

[Dame Caroline Dinenage]

The hon. Gentleman is absolutely right; better regulation is exactly what we are pushing for. In fact, everything needs to be better when it comes to the services governed by those organisations. As he says, the vast majority of funeral directors up and down this country work with incredible professionalism, great pride and integrity. They care deeply about what they do, and about the families and the individuals who they look after. One funeral technician told me that she does not see her work as a job—she sees it as a privilege. Such businesses and individuals have been silent pillars of our communities for centuries.

Healthcare in Rural Areas

Jim Shannon Excerpts

Wednesday 4th March 2026 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a real pleasure to serve under your chairship, Dr Huq. I want to give a special thank you to the hon. Member for Mid Bedfordshire (Blake Stephenson) for securing today’s debate on this matter. It is important that I am here, as a representative of a vastly rural constituency, to highlight the situation faced by my constituents.

I have been fortunate to live in the country all my life; I have now lived on a farm for some 47 years, just outside a small village in my constituency of Strangford on the Ards peninsula. Healthcare is a nationwide issue that impacts every individual, and we want to get it right. Rural populations often live far from hospitals or specialist clinics, making timely care more difficult. The limited public transport and long travel distances can cause delays, especially in emergencies, for the likes of ambulances and so on.

Around one in 10 patients live more than 5 miles from a practice, showing the extensive travel required for a 10-minute GP appointment, in which only one issue can ever be addressed. There are those in my constituency who find it almost impossible to get appointments, and GPs now state that they can take appointments only in the case of emergencies, when we all know that is the purpose of A&Es. GPs are for general issues that may impact someone’s day-to-day life, and there are not enough of them to go round. Everybody has mentioned development, and there is massive development on the Ards peninsula. Every village has grown, and demand is greater than ever it was before.

I shall quickly mention dentists in Northern Ireland. Some 114 dentists in Northern Ireland have handed back their NHS contracts to the Department of Health and Social Care, with many moving to private practice. Those patients then move on to a £25 a month retainer. As a result of these contract returns, more than 53,000 NHS patients were removed from dental practice lists over that period. For a rural constituency, that means there is no choice but to pay in the private sector.

There are continuing issues regarding GP provision and dental care across Northern Ireland, especially in my constituency. The issue is heightened in rural areas, and I will continue to raise these issues for those who have trouble. I understand that health is devolved, but the issue across the board remains the same. I hope we can strive to do better for my constituents and all our constituents, as well as for rural constituencies in general. Location should never dictate the provision of healthcare, be it someone’s GP or dentist, both of which every citizen of this nation has a right to.