Josh Newbury MP: speeches 2026

Speeches

• 29 Jun 2026 · Animal Abusers · Hansard source

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  I will never miss an opportunity to thank the RSPCA, including in Leeds South West and Morley and the East Ardsley centre. My hon. Friend is right that RSPCA staff and volunteers often face abuse themselves because many people are rightly passionate about protecting animals, but it is important to remember that their powers are far more limited than perhaps many of us realise. They are as determined as anybody to do the right thing by animals, so we need to make sure that they are given as many powers as are appropriate and that we support them in doing their important work. The enemy are the people who commit the abuse, not the people who try to help. The Government are right that judges should retain discretion over the terms of disqualification orders. Every case is different, and rehabilitation should always remain possible where appropriate, but once someone has been convicted of egregious animal abuse, a ban should be automatic and should have a practical effect. The petition is not asking us to reinvent the wheel. The convictions already exist and the courts already have the powers. All we are asking is to close one obvious gap in the system so that trusted organisations have the information they need to stop known offenders acquiring another vulnerable animal. I say to the Minister that if that change could prevent even a handful of animals suffering, it would be a step well worth taking.

• 29 Jun 2026 · Animal Abusers · Hansard source

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  It is a pleasure to speak with you in the Chair, Dr Murrison, for what I think is the first time. I thank my hon. Friend the Member for Burton and Uttoxeter (Jacob Collier) for, as always, introducing the debate so thoughtfully as a member of the Petitions Committee. I also thank the 386 animal lovers in my constituency who added their names to the petition. Colleagues may have been hoping to have an animal welfare debate without hearing from me, but I am afraid that today is not that day. The petitions that we debate are not often started by social media influencers, but it is because of the determination of Bea Elton—known to her millions of followers, myself included, as Clean with Bea—that we are able to debate this important issue today. I will forgive hon. Members who have not yet watched Bea’s videos if they are on their phones throughout my speech. Bea offers free home cleaning to people in deep crisis or with severe hoarding tendencies. Sadly, she often comes across animals that have been neglected and have had to live in awful conditions. I am glad that Bea has used her experience and platform to bring the issue to Parliament. I hope that we can focus on the art of the possible, as I know that preventing the needless suffering of animals unites us all, across the political spectrum. Last autumn, I went on a ride-along with Sophie, an RSPCA inspector, to see what a day looked like for her. My constituency is full of pet owners, and who can blame them—why would anyone who lives somewhere as beautiful as Cannock Chase not get a dog as motivation to explore our stunning scenery together? However, I admit that I do not have a pet, not because I do not love animals, but because I could not give one the time and attention that it deserves—I often joke that I have two young kids and that is enough for now. This debate comes down to the fundamental fact that owning a pet is not a right; it is a privilege and a responsibility. The time I spent with Sophie reinforced that. Like many people, I assumed that most of an RSPCA inspector’s work involved rescuing animals from awful situations—and of course, they do that, in tandem with the police—but what surprised me was how much of their time is spent trying to stop animals reaching that point in the first place. Inspectors spend hours following up with owners after advising them that a pet needs veterinary treatment, for example, and they work closely with local vets to check whether animals have actually received the care that they need. Most owners do the right thing, but when somebody repeatedly ignores inspectors’ advice and an animal continues to suffer because treatment has been withheld, concerns rightly begin to escalate. One thing that has stayed with me from that day is that many cases of animal abuse reveal something far deeper. Inspectors told me that they often encounter people whose lives have unravelled. That might be because of relationship breakdown, domestic abuse, as we have heard, physical illness or mental ill health. None of that excuses neglect, but it reminds us that animal welfare is often connected to the wider challenges in somebody’s life. We also know, as we have heard, that the relationship can work the other way. The Ruby’s law campaign highlighted that perpetrators of domestic abuse may threaten or harm family pets as a means of coercion and control, knowing exactly how much fear and distress that causes. Nine in 10 people experiencing domestic abuse in England and Wales reported that animals were also abused by the perpetrators, so protecting animals is not separate from protecting people; sometimes it is part of the very same task. That is why partnership between organisations is so important. The RSPCA, as we know, does not have the power to seize animals, so it relies on the police following its investigations, and inspectors cannot force entry into a property if access is refused. The experience left me with one clear thought: our system does a reasonable job of responding once abuse has happened, but I am not convinced that it does enough to stop the next animal becoming a victim. As hon. Members have highlighted, the Government’s response to the petition states that convictions for animal cruelty are already recorded on the police national computer and that courts have the power to disqualify offenders from keeping animals. That is absolutely true, but rescue centres, breeders and pet shops cannot routinely check those records, so somebody who has already been banned from keeping animals can walk into one of those organisations, appear perfectly respectable and walk out with another pet simply because the people rehoming the animal have no way of checking whether that person has been disqualified. That does not mean the law has comprehensively failed; it means there is a gap in the system. Breaching a disqualification order is an offence, but somebody has to discover that breach first. Given the demands on our police and local authorities, we should not be relying on chance or left hoping that somebody will spot what has happened when another animal is already suffering. Surely it is better to stop the animal being placed there in the first place. I understand the Government’s concerns about privacy when it comes to a public register, but there could be a sensible middle ground, as hon. Members have already outlined. If a register was available to verified rescue organisations, breeders and licensed pet sellers, it would allow them to check whether somebody is currently subject to a disqualification order before an animal is handed over. It would not be to name and shame, or to publish personal information, but to answer one simple question: can this person legally keep and care for an animal?

• 25 Jun 2026 · Business of the House · Hansard source

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  Last month, my constituent Kyle Pusey was recognised with Cannock Chase district council’s youth endeavour award for his years of outstanding volunteering at Norton Canes library. Kyle is known for being polite, hard-working and always willing to go the extra mile. Will the Leader of the House join me in congratulating Kyle on this well-deserved achievement, and could we have a debate on the positive difference he and many other young people make to communities up and down our country?

• 24 Jun 2026 · Farming: Financial Sustainability · Hansard source

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  I thank my hon. Friend the Member for North Northumberland (David Smith) for securing the debate. I have been applying for a debate on this subject for many months, so it is great that we are having one. I warmly welcome the new farming Minister to his place, too. I recently had a catch-up with farmers in Cannock Chase and heard about various challenges that they are facing. We are living in highly uncertain times. The new series of “Clarkson’s Farm” is shining a light on how financially tough farming can be, but also on the many ways that technology can improve that picture environmentally and financially. The Government’s investment of £123 million to help farmers boost their productivity is therefore very welcome. I am also very pleased that the farming road map is now out. As chair of the APPG on UK food security, I was particularly pleased to see the restated commitment to maintaining our food production at at least current levels. I am also keen on making sure that supply chains are fair for our farmers—something that we often could not have said in recent years. Over the last couple of weeks, the EFRA Committee has had the privilege of visiting New Zealand, where I was struck by the prevalence and power of agricultural co-operatives and the power that they give Kiwi farmers. I would love to see more of that here, because it would go a long way to redressing the imbalance that we all too often see in our supply chains here in Britain. I look forward to working with the Minister on that and many other issues that colleagues have raised, but in the interests of time I will leave it there.

• 24 Jun 2026 · Farming Road Map and Profitability Review · Hansard source

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  The road map is a very welcome step forward that will give our farmers certainty for the future. I particularly welcome what the Secretary of State had to say on co-operatives, which could go a long way to redressing the current power imbalance in our food system. I hope we can begin that work at pace. We hear consistently from farmers that they feel that the planning system—made so much worse by the Conservatives—is stacked against them. Broiler chicken farmers, for instance, are expected to lower stocking densities but cannot get permission to expand their sheds to compensate, while farms in water-stressed areas are having to go through years of bureaucracy to build reservoirs. Does the Secretary of State agree that reforming the planning system will be key to freeing up trapped investment and getting us to the sustainable, prosperous future for British farming that this road map sets out?

• 23 Jun 2026 · Household Budgets · Hansard source

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  The Chancellor will know that I have raised the need to take action on the costs faced by farmers and families alike, both of which she has done. The great British summer savings scheme will be a brilliant help with the cost of giving kids a great school holiday, particularly the free bus travel for five to 15-year-olds throughout August. Does the Chancellor agree that continuing to look at how we can support affordable bus travel for constituents like mine in Cannock Chase will be very important even beyond the great summer break to come?

• 23 Jun 2026 · Household Budgets · Hansard source

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  14. What steps she has taken to help support households with the cost of living.

• 1 Jun 2026 · Health Bill · Hansard source

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  Before becoming an MP, I worked in communications in our NHS. Combined with numerous stories from my constituents, that gives me a view of the NHS at its best, but also where things do not work as they should. Very few of our constituents think about the structures of the NHS. For them, whether it is working right comes down to whether they can see a GP and how long it takes to get a diagnosis and treatment. I welcome the Bill because all of us have constituents who have had to give the same information over and over, wasting their time and their clinician’s time and undermining trust in the fundamentals of a unified national health service. A member of my team told me about one of her family members who suffered a stroke two years ago. He got to A&E at 11 am, was diagnosed after several hours and then at 6 pm, after several scans, was told that he needed to travel to another hospital to see a specialist. When he got there, he was told that the data had not been passed across, so all those scans and tests had to be done again. Stories like that demonstrate why the single patient record made possible by this Bill is so vital for patients, who should not have to repeat their symptoms, and for clinicians, who want to focus on care. On the abolition of NHS England, the Government are right to shift money currently tied up in monolithic bureaucracy to frontline services. But as one of, I assume, very few former NHS communicators in this House, I want to dedicate the time I have left to them. The abolition of NHSE comes at a time when ICBs are shedding half of their staff and are busy clustering. It is a time of immense change and anxiety for staff. I have recently seen a slew of posts from brilliant NHS communicators who are signing off for the last time, or posting bittersweet celebrations of securing a role while many colleagues are leaving. Some see NHS communications jobs as a “nice to have”, but the reality is they are the people who ensure that patients, from general practice through to discharge, know how to get the right care at the right time. They are the ones who spring into action when the phone lines go down. They tell the stories of real people working and getting treated in our NHS, which is so vital to encouraging others to spot early warning signs and come forward. Comms in the NHS literally saves lives, and that is why when I see comms professionals leaving the NHS, I fear that we could be throwing the baby out with the bathwater through this important and justified process of change. I pay tribute to every NHS communicator, and I hope the Minister will say a little about how these legends will be valued and retained. The Bill will do so much to improve the NHS for millions of people in our country, so I will proudly support it, but let us ensure that we know the value of everyone who makes our NHS world-class.

• 21 May 2026 · Middle East: Economic Response · Hansard source

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  The Chancellor’s announcement of a £120 million support package for ceramics will of course be welcomed in Stoke-on-Trent, but also in Rugeley in my constituency, which is home to many workers at the Armitage Shanks factory in the constituency of my hon. Friend the Member for Lichfield (Dave Robertson), who is a staunch advocate for them. Does the Chancellor agree that it is only this Labour Government who are putting in the investment that firms such as Armitage Shanks need? Does she also agree that iconic British brands like this should play a central role in new homes, to boost them even further?

• 20 May 2026 · Engagements · Hansard source

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  Q6. Trump’s war in Iran means that the world will have to contend with a spike in inflation throughout this year. Many of my constituents struggle to afford their weekly shop, while our farmers struggle to make a living by producing what goes on the shelves. Labour Governments should always be on the side of working people, whether they are in the supermarket or on the farm; if we are not, we will not be forgiven. Will the Prime Minister follow the example of our European neighbours, including Ireland, by bringing in a package of support to help our farmers stay afloat and protect our constituents from the worst of Trumpflation?

• 19 May 2026 · Energy Security · Hansard source

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  After the increase to the time limit, I think I will buy a lottery ticket tonight, Madam Deputy Speaker. Having worked in energy, I am all too aware that it has not always been high on the political agenda, but since the invasion of Ukraine, it has of course seized the headlines, and it is in the news once again because of President Trump’s distraction plan in Iran. I welcome the Government’s focus on energy security, but I hope that we will not narrow our view of what energy security and clean energy mean. Reliance on fossil fuels is a growing drag on our economy, so the Government are right to push for electrification where viable, alongside home-grown renewable energy to get us off that rollercoaster, but zero carbon renewable gas should also be a critical part of our plan for energy independence. Many aspects of the energy independence Bill are fantastic, such as new obligations on landlords to invest in renewable energy and beefing up Ofgem with new powers that will enable it to step in where consumers have been ripped off. When it comes to the warm homes agency, I welcome the huge investment that will be going into insulation, but remain concerned about the direction of travel on electrification for almost all homes. Since I first entered the energy industry just over a decade ago, the zealousness in the London-based civil service around heat pumps has not waned, despite years of evidence that the roll-out and cost reduction of heat pumps has not matched optimistic estimates. I say this as somebody who got a heat pump last year. The total cost of my installation was over £14,000 beyond the £7,500 boiler upgrade scheme payment. I am in a fortunate position, but I cannot say to my constituents that they should spend their savings or get themselves into heaps of debt to get a heat pump. With the way things are right now, the vast majority of people in Cannock Chase cannot afford one, and I have not seen anything about the warm homes agency that will fundamentally change that reality. If we are serious about helping struggling households, we have to ensure that the agency’s immediate mission is to bring bills down. Let us ensure that the energy independence Bill lives up to its name by also kickstarting a revolution in renewable gas production. A boost to biomethane production could support farmers to handle organic waste better and to secure a reliable income stream; it would bring down emissions in sectors that cannot easily electrify, including the potential for carbon-negative gas through the usage of carbon capture and storage; and it would ensure that we are masters of our own destiny when it comes to a critical fuel that will remain part of our energy mix for decades to come. The extension of the green gas support scheme to 2030 is welcome, but like all energy investment pipelines, producers and investors need longer-term certainty on the Government’s position. I have heard similar concerns from the hydrogen industry. Although there is widespread support for the Government’s investment in CCS and the first round of hydrogen investment, we still do not have the hydrogen strategy. All these strands need to be knitted together as part of a balanced approach on reaching net zero, supporting our constituents and businesses along the way. In the Government’s focus on clean energy and the jobs of the future, let us not lose sight of the promise of biomethane and hydrogen as other examples of home-grown clean energy. Above all, let us always be on the side of our constituents who want to do the right thing in decarbonising their homes, but worry how on earth they will afford it.

• 23 Apr 2026 · Allied Health Professionals · Hansard source

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  I thank my hon. Friend the Member for Thurrock (Jen Craft) for leading the debate and my hon. Friend the Member for Dudley (Sonia Kumar), who has done so much incredible work as a physiotherapist previously and a staunch advocate of allied health professionals since her first day in this House. I pay tribute to the AHP community across my constituency. In my past life, I had the pleasure of working at the Coventry and Warwickshire partnership NHS trust, and that experience shapes how I have approached this debate. Many Members have rightly recognised the roles of physiotherapists, paramedics, occupational therapists, and speech and language therapists, which are well recognised and rightly valued. But under the AHP umbrella are an incredible group of people I would like to pay tribute to: music, art and drama therapists. Those roles are not “nice to haves”; they are a vital part of our mental health workforce. I saw during my time at CWPT how powerful the benefits of creative therapy are. As my hon. Friend the Member for Thurrock described so eloquently in her excellent speech focused on paediatrics, for lots of people who have experienced trauma, who live with conditions that can make verbal communication difficult or who do not yet speak fluent English, such as refugees, common forms of talking therapy that work for so many people do not necessarily work for them. For those experiencing mutism, for example, creative therapies can be the only way they can access treatment. Through art, music and drama, lots of patients are able to process their experiences, communicate their emotions and rebuild a sense of self in ways that traditional models do not always reach. At CWPT, there was a real investment in these services. Importantly, many therapists were directly employed, rather than brought in on short-term contracts. That not only offers stability to the workforce, but for patients it allows services to embed, relationships to develop and outcomes undoubtedly to improve. I had the privilege of seeing and hearing those patients’ stories for myself, and in so many cases the work of those therapists was quite literally life-changing. Despite that, these professionals are often in short supply. Part of that issue, in my view, is visibility. These roles often are not spoken about in schools, careers advice and even, at times, in our broader conversations about the NHS workforce. There are now established degree and training pathways for these roles. They are skilled professions that require significant training and expertise and are recognised through professional bodies regulated by the Health and Care Professions Council, yet many young people with a creative inclination and flare are all too often unaware of them as a possible career path. That is a missed opportunity, both for those individuals, who often have a passion for caring and for sharing their creativity, and for our NHS and social care. The Government are rightly focused on getting more people into work—in particular young people, who are facing a tough job market—and we should be thinking expansively about the routes that are available to them, including in creative and arts-based professions. For those who are drawn to the arts, music and drama, these roles can be a way to build a deeply rewarding, stable career in the NHS—a career that combines creativity with care and contributes directly to patient wellbeing. Importantly, for those who might have spent years navigating the uncertainty of freelance creative industries, these professions can provide a real sense of stability, progression and purpose, without them having to leave any of their skills behind. That is particularly true at times of life when stability is so valuable, such as when starting a family. The Government have been clear that the workforce plan that will stem from the very welcome 10-year plan will focus on how we can make good on its priorities, including shifting care closer to patients, bringing fragmented services together and a greater focus on mental health. Sitting at the centre of the Venn diagram of all those things is creative therapies. Let us start with the therapists of tomorrow by improving awareness of those roles through schools, colleges and careers services. Let us look at widening training pathways, to ensure that these careers are open to a wide range of people, including career switchers. Currently, there is a level 7—master’s level—degree apprenticeship for the three main forms of creative therapy, but as of this year, funding for level 7 apprenticeships has been largely restricted to under-21s, so the number of people accessing those higher-level courses will now be very small. Given that in mental health, many staff move up into roles from within the workforce, it would be fantastic if an apprenticeship pathway through to creative therapist roles could be developed, similar to what we see in nursing. Above all, we should recognise that the impact of those already in these roles is not peripheral; it is central to so many patients’ care and recovery. Investing in this area would not only support individual recovery, which would ease pressure elsewhere in the system and enable the earlier intervention that so many Members have referred to, but lead to improved engagement and, ultimately, better outcomes. Art therapists, music therapists and drama therapists might not be the first roles we think of in mental health, but they can often be the ones that help our most vulnerable and isolated constituents to start to open up and communicate their experiences—often for the first time—and guide the way to wellbeing. We talk a lot in this place about workforce shortages, and rightly so. There are thousands of young people out there, including in Cannock Chase, who love music, art and drama but perhaps worry about whether there is a career for them in creative industries. They might have absolutely no idea about the enormous contribution they would make in our healthcare workforce. This is partly about recognition, but it is also about being more imaginative in how we think about both healthcare and careers advice. It is a chance to give more people a way to use their creative passion to transform lives.

• 23 Apr 2026 · Business of the House · Hansard source

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  Type 1 diabetes with disordered eating, or T1DE for short, is a lethal combination of two conditions, but pilot sites set up to trial bespoke NHS services that bring specialists from both fields together have closed down due to funding coming to an end, including two earlier this month. The all-party parliamentary group on diabetes wrote to the DHSC about that in February but has not received a reply. Will the Leader of the House chase a response and ask the public health Minister to make a statement on the matter so that we can debate support for that vulnerable group of patients?

• 26 Mar 2026 · Business of the House · Hansard source

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  In recent weeks, I have heard from many fathers in my constituency concerned about the attitude they have encountered from the Child Maintenance Service and the Children and Family Court Advisory and Support Service, including assumptions that they are trying to shirk payments, absence of support when ex-partners cut off their contact with their children, and accusations being recorded without their side even being heard. Yes, there are manipulative and abusive men out there, but most dads are not like that and deserve to be treated fairly, not with prejudice. May we have a debate on the experiences of fathers in dealing with our family courts and the CMS?

• 26 Mar 2026 · Ehlers-Danlos Syndrome and Craniocervical Instability · Hansard source

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  I give way to my hon. Friend.

• 26 Mar 2026 · Ehlers-Danlos Syndrome and Craniocervical Instability · Hansard source

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  I could not agree more with my right hon. Friend. He mentioned a key word in this debate—“hope”, which is something that so many people with the conditions do not have at the moment. That is what we absolutely need to give them. I share his hope that there is a way forward, but we need to make sure that this group of patients is included in that. I am told that the rare diseases pathway could be one route forward. I would love to have the chance to explore that further with the Department alongside the people who clearly have an interest in this. The Government have rightly placed health at the centre of their agenda, and through the NHS 10-year plan we have an opportunity to build a system that is more joined up, fairer and more responsive to complex conditions like the ones I have mentioned. But patients like Connor cannot wait for long-term reform. Without action now, many will continue to face avoidable harm, worsening disability and, in some cases, irreversible deterioration. Let this be the Parliament where we turn the tide, recognise the people who are being let down, and act to ensure that no patient is left without a pathway to care simply because their condition does not yet fit the system.

• 26 Mar 2026 · Ehlers-Danlos Syndrome and Craniocervical Instability · Hansard source

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  I am grateful for the opportunity to briefly wind up; the fact that it must be brief shows the incredibly rich, emotive and deep debate we have had. Obviously, I will not be able to go through everybody’s contributions, but I thank all hon. Members who contributed. They raised the hugely complex issues that people with these conditions face, including mental distress, the need for joined-up care, the difficulties for people under the age of 18, the need to get wheelchair services and other provisions in order, the desperate need to be independent, the want to get back to work and to be able to live a fulfilling life, and the long delays to diagnosis. Members also raised the hope that we can draw from best practice in our own nation as well as overseas. I also thank Members for highlighting issues including the lack of awareness and the postcode lottery that we have in this country, which hampers our ability to get to where we need to be. I am really encouraged, however, by the speeches we heard today, the Minister’s response, and the things that we can go away and work on together. The whole community will feel far more seen and heard as a result of this debate. I very much look forward to taking that well beyond today, as we hopefully do far better for this incredibly important group of people. Question put and agreed to. Resolved, That this House has considered outcomes for patients with Ehlers-Danlos syndrome and craniocervical instability.

• 26 Mar 2026 · Ehlers-Danlos Syndrome and Craniocervical Instability · Hansard source

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  I thank the Minister for her words, but I would add one point to her list, if I may, which is aftercare for people who have travelled abroad to have surgery. I understand that that is a tricky issue for the NHS, but we have heard consistently from several hon. Members today that their constituents have been rejected for any meaningful aftercare once they have come home, despite having a clear clinical need for it. Could she add that to her list to take back her officials?

• 26 Mar 2026 · Ehlers-Danlos Syndrome and Craniocervical Instability · Hansard source

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  I could not agree more with my hon. Friend. The exhaustion and exasperation that she refers to occurs, as we have heard from other hon. Members, time and time again. I agree that the work being done on rare diseases is incredibly important, and at the end of my speech I will come to how I hope that we can build on that work for people who suffer from these conditions. The impact on Connor’s mental health has been immense. He told me that he feels as though he is “rotting in bed”, watching his condition deteriorate without any clear route to help. He has spoken openly about how low he has felt and the thoughts that he has had because of that, including considering whether he has any options left at all. While all that is happening, his condition continues to worsen. In recent days, he has experienced seizures and episodes affecting his swallowing and breathing. These symptoms are deeply concerning and underline the urgency of his situation. In response to inquiries about what support might be available, I have been told that there is currently no established or commissioned NHS service for investigation, multidisciplinary discussion or surgery for CCI in patients with hypermobile EDS. Connor is seriously unwell and is getting worse, and he knows that there is no clear pathway for him to access the care he needs anywhere in this country. Late last year, Connor and I had the opportunity to meet with the then Minister for Public Health and Prevention, my hon. Friend the Member for West Lancashire (Ashley Dalton). We discussed the challenges faced by people living with these complex conditions, including the lack of support in the NHS, the shortage of trained specialists and the fact that there is no way for anybody to get an upright MRI scan in the UK, which is crucial for diagnosing CCI. I was very grateful to my hon. Friend for her time and her compassion, and I would like to take this opportunity to wish her all the best with her treatment. We were joined at that meeting by representatives from the brilliant charity Ehlers-Danlos Support UK, as well as Connor’s advocate, Natasha, all of whom are in the Public Gallery with us today and have worked closely with my team to help us to better understand the link between EDS and CCI and what that means for people with those conditions. I sincerely thank them for that. What I have heard from Natasha, and from people across the UK who have contacted me, is that Connor’s is not an isolated case. I will share a few more experiences with the House to reveal the true scale and seriousness of the issue. I have heard from patients who, in 2017, were assessed for surgery here in the UK as part of a planned programme involving international specialist experience. At that point, there was not only recognition of this condition but a clear intention to treat it in the NHS. Yet those procedures were cancelled shortly before they were due to take place, leaving those people without care and without a pathway forward. What is most concerning is that, in the years since, we have not moved forward; in many ways, we have moved backwards. I have heard from people who were told that their condition was life-threatening, yet were left to face that reality alone, without support and without options. From there, the trajectory becomes all too familiar: people return again and again to NHS services, searching for answers, only to be told that nothing more can be done. I have heard from people who have had to raise extraordinary sums of money in a matter of weeks—while seriously unwell—and from families who have had to leave the UK altogether to access care, only to find themselves stranded overseas as conditions worsen and costs escalate. Even when people do receive treatment—often at enormous cost—they return home to a system that is still unable to support them, with no clear route for aftercare, rehab or specialist oversight. What is striking is not just the severity of these stories but their consistency —different people, in different parts of the country, seeing the same gaps, barriers and outcomes. Natasha has also shared her own experience with me. Like many, she spent years seeking answers within the NHS as her condition deteriorated, only to have her symptoms dismissed. At her most unwell, she lost the ability to stand, walk and even swallow properly. When she was upright, sitting or standing, even briefly, her arms became paralysed, she lost her speech and the ability to swallow, and was also losing her vision. These are absolutely horrific symptoms. Natasha was eventually forced to seek specialist care abroad, having travelled by air ambulance to get there, where she underwent lifesaving surgery at significant personal cost. Since returning to the UK, she has continued to face challenges in accessing the specialist follow-up and rehab that she needs. Despite everything she has been through, Natasha has worked tirelessly to support patients like her and to bring this issue to light. I place on record my thanks to her, not only for sharing her experience but for the work she is doing as an advocate for other people, such as Connor, in the same position. One reason why patients are passed between multiple specialists, and why diagnosis is so challenging, is the lack of access to appropriate diagnostics. Current NHS pathways are designed for CCI caused by trauma, such as road-traffic collisions, but not for EDS. In cases of traumatic instability, the problem is usually visible on standard scans performed lying down, and can be assessed through established neurological pathways—including the very fusion surgery that Connor is seeking. But in EDS, the instability comes from ligament laxity and is often positional, so that when someone is upright, the head is not adequately supported by the neck. That is often not visible when patients are lying flat in a standard MRI scanner, so their scans might appear normal despite ongoing neurological symptoms. One can see how, in cases like that, diagnoses such as Munchausen can come up. That means that many patients find themselves going back and forth within the system, often ending up in A&E with chronic symptoms and then being discharged because clinicians just do not know what to do. Symptoms can overlap with other recognised conditions, resulting in delays due to misdiagnoses and therefore missed opportunities to prevent further deterioration. There are also risks in how patients are managed during the period of instability. If instability is not recognised as a possibility, patients might be directed towards physiotherapy or exercise-based rehab, which, although well intentioned, can in some cases make things worse. At the same time, we know that CCI surgery is already performed in the NHS, yet there is no equivalent for patients with EDS. Imagine someone with a broken arm going to A&E, but being told, “I’m sorry, we only X-ray legs.” They point to their arm, the doctor can see it is broken and they can feel it is broken, but they cannot scan it, so they have to go home—over and over. Even worse, imagine if, instead of being provided with a plaster cast, they were referred to counselling. That might seem far-fetched, but that is what patients with EDS and CCI are facing. In the absence of an NHS route, patients are forced to take matters into their own hands, as I have said. In some cases, they might even require specialist medical transport to get abroad. Devastatingly, some find that their condition is too advanced for them to even make the journey. As I have said, there is then no aftercare, no consistent access to specialist imaging reviews and no co-ordinated rehab; many people are refused any of the care that would normally follow complex neurosurgery. Before I conclude, I would like to reflect on what has struck me since I began working on this issue on behalf of Connor. I have lost count of the number of people who have been in touch with me from across the country, and of the conversations with hon. Members who hear similar stories from their own constituents. I have just been told that an appeal from EDS Support UK has reached almost all MPs—over 98%. That is how many of our constituents are getting in touch with us about this issue. The conditions are often described as rare, but the truth is that for many patients they are simply rarely diagnosed. Without a pathway to diagnosis or treatment, patients with EDS and CCI are effectively invisible in NHS data. Behind every email, message and conversation is somebody trying to be heard—trying to access the care they need and live a life that many of us take for granted. I should stress that it is not easy for people living with these conditions to even do that. Many people are forced to become campaigners and lobbyists, but their energy should not be spent fighting to prove that their illness is real or to get access to basic care. They should be able to focus, as anybody should, on being believed, supported and treated. The last time EDS was debated in this Chamber was May 2024. With the general election called within days of that debate, the follow-ups on the issues raised by Members then were not possible. My ask of the Government is simple, and it comes not from me alone, but from patients, clinicians and organisations such as EDS Support UK, and from Connor. Patients are not asking for predetermined clinical outcomes or for routine surgical intervention; they are asking for recognition that suspected CCI in EDS requires a clear, defined process for assessment in the health service. In the short term, that means taking proportionate, practical steps to reduce avoidable harm, and making sure that access is appropriate, that diagnostic assessment happens and that a specialist opinion is given. It means being honest about where no pathway exists and providing clear guidance to avoid potentially harmful management when instability has not been ruled out. Finally, it means creating defined escalation routes with funding mechanisms where clinically necessary. In the longer term, we clearly need an NHS diagnostic and care pathway with proper clinical governance, referral routes, specialist input and continuity of care so that access to diagnosis and treatment is based on clinical need, not the ability to pay.

• 26 Mar 2026 · Ehlers-Danlos Syndrome and Craniocervical Instability · Hansard source

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  I beg to move, That this House has considered outcomes for patients with Ehlers-Danlos syndrome and craniocervical instability. It is a pleasure to serve under your chairship, Ms Furness. Before I start my speech, I thank the Backbench Business Committee for granting us the time for this debate. I also thank Members from across the House who supported our application, and the clinicians, the charities and, most importantly, the patients who have shared their experiences in order to inform the debate. Let me also take this opportunity to warmly welcome the Minister to what is still her fairly new role. I know that throughout her time in Parliament she has been a staunch advocate for people with conditions such as less survivable cancers and other rare conditions, and for people who have suffered from medical failings, such as those with pelvic mesh. Throughout those campaigns, she has above all given voice to people who feel let down and forgotten by our healthcare system, so I know that she will empathise with much of what will be said in today’s debate. In April last year, I had an email from my constituent Connor Edwards. Connor opened his email by telling me that he was in “sheer desperation.” He explained that he was living with two conditions, Ehlers-Danlos syndrome and craniocervical instability—having pronounced them correctly, I will now refer to them as EDS and CCI. I will be honest with the House: until that point, I had never heard of these conditions. I did not know how profoundly they affect people such as Connor, or the extent to which they are unseen in our NHS. Six years ago, Connor was 25 and living a very active life. He was a keen fisherman and mountain biker and, like many people in my constituency of Cannock Chase, he loved to spend his time outdoors, surrounded by the natural beauty that we are so fortunate to have on our doorstep. Connor’s story with EDS and CCI began when he was bitten by a tick while he was out on the Chase and subsequently developed Lyme disease. However, it turned out that that was only the start. In seeking explanations for his worsening health, Connor had to do so much research himself. Then, after finally seeing many specialists, he was diagnosed with EDS, a connective tissue disorder that affects the collagen responsible for supporting the skin, joints, blood vessels and internal organs. Some people living with EDS experience chronic joint dislocations, severe and persistent pain, and significant neurological complications. One of those complications in cases like Connor’s is CCI, whereby the skull no longer sits safely on the spine, placing pressure on the brain stem and spinal cord. I am conscious that I can get quite technical when I discuss Connor’s case, so I will put it in his words. He says that his head is quite literally falling off his body. Chillingly, that is not something that is picked up on a scan but not felt; rather, Connor feels his head shifting around dangerously every day, with all the pain that goes with that. He is also acutely aware that his symptoms continue to worsen. It is the intersection between EDS and CCI that I will focus on today, and I know that many other hon. Members will make important contributions about the broader challenges faced by people living with EDS.

• 26 Mar 2026 · Ehlers-Danlos Syndrome and Craniocervical Instability · Hansard source

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  I completely agree with my hon. Friend. In this country, we are incredibly proud of our NHS and the care that it can give people who have very common or very rare conditions. However, as I will set out further, and as he has just said, so many people with these two conditions feel very unseen, and we absolutely need to correct that. People should not have to fundraise to seek private treatment to be seen by doctors. I will ensure in my speech that the experiences of patients who develop these two conditions and serious neurological complications are heard. When I speak to Connor now, the reality of what he is living with is incredibly difficult to hear. He has told me how much he is struggling, not just with the physical symptoms of his conditions but with his battle to be recognised in our health system. He feels that his conditions are not seen, not properly assessed and too often misunderstood. Like many other people, he has been left feeling that he is not even believed. Connor told me that at one point he was barely eating, in order to try to save enough money to see a specialist neurosurgeon abroad. He does not come from a privileged background, so he has had to set up a crowdfunding page in the hope of raising enough money to get the specialist surgery and treatment that he needs. However, like so many patients in a similar situation, he is falling short. Even if he is able to reach his target and go abroad, he will be left asking the very simple question: “What happens when I come home?” He has described feeling as though he has been “gaslit” by the system, with his symptoms attributed elsewhere and his concerns not taken seriously.

• 26 Mar 2026 · Ehlers-Danlos Syndrome and Craniocervical Instability · Hansard source

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  One thing that we have come across consistently is that a huge amount of research has been done internationally and, as many hon. Members have outlined, constituents are funding themselves to go abroad for treatment and surgery. As part of that work with the NIHR, would the Minister be willing to look at international best practice in this area, so that we can draw on the experiences of many other countries as they work out how best to treat this group of patients?

• 26 Mar 2026 · Ehlers-Danlos Syndrome and Craniocervical Instability · Hansard source

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  I absolutely agree with both my hon. Friends. They echo what I have heard from many of my constituents. This issue is often overlooked, and we need to do so much better for many thousands of people across the country, so I thank them for sharing their constituents’ experiences. So many people are in a similar situation to Connor’s, which is not unusual. Many people have told me that they have been diagnosed with Munchausen syndrome, so they are not just dismissed but told that their condition is fictitious.

• 23 Mar 2026 · Puberty Blockers Clinical Trial · Hansard source

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  It is a pleasure to see you in the Chair, Mr Mundell. At the outset, I want to acknowledge the strength of feeling on all sides of this debate, and our responsibility in this House to provide clarity that is grounded in evidence and centred on the wellbeing of the young people we are talking about. The petition calls for the cancellation of the planned clinical trial of puberty-suppressing hormones, describing them as unsafe and inconsistent with safeguarding. However, the reality is that Dr Cass was clear in her review that we are lacking evidence, and that one of the scenarios where she believed that puberty blockers should be prescribed for gender incongruence is a clinical trial. A trial is a response to uncertainty, focused on ensuring that clinical decisions are made on a foundation of robust evidence. I find it a little more than ironic that, when the Cass review was published, many of the voices now telling us that a trial should not go ahead were saying that the Cass review should be accepted and implemented in full. They have gone from saying, “We need the evidence,” to, “This trial should be stopped.” If someone can show me another way of properly gathering clinical evidence other than a full clinical trial, then I am all ears, but, in reality, we are talking about shutting down options for trans people. With waiting times for a first appointment for a gender identity service currently standing, in many cases, at more than five years, it is not as if there are copious alternatives out there for this group of young people. Many are waiting the entirety of their adolescence just to start treatment. Would we tolerate that for any other group of patients? I doubt it.

• 23 Mar 2026 · Puberty Blockers Clinical Trial · Hansard source

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  In the interest of time, I will not. Although I respect the concerns that have led many to sign the petition, I urge colleagues to reflect on the consequences of the course of action it proposes. Cancelling research does not resolve uncertainty, but entrenches it. In doing so, it risks leaving vulnerable young people without the evidence base needed to support safe, informed and compassionate care. As someone who is proud to be an ally of the trans community, I believe that we have a duty to ensure that trans young people hear a clear message from this House: they are supported, respected, cared for and never alone.