Ehlers-Danlos Syndrome and Craniocervical Instability

Thursday 26th March 2026 Westminster Hall

13:30

[Josh Newbury (Cannock Chase) (Lab)]

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.

[Alistair Strathern (Hitchin) (Lab)]

I congratulate my hon. Friend on securing this debate on a topic that, like him, I must confess I had not heard much about until I spoke to two of my constituents about it. Having heard from Sarah and Mark, who both suffer from craniocervical instability, I know that it is impossible for those suffering from it not to be left devastated by its impact. It not only limits and narrows their lives and what they can do, but crushes their family finances, as they are forced to seek expensive private treatment due to inadequate access to treatment via the NHS. Does my hon. Friend agree that it is really important to put that right and that we should start to consider what a better clinical pathway for this condition might look like, so that everyone suffering from it can access the treatment they deserve in their community?

[Josh Newbury]

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.

[Patricia Ferguson (Glasgow West) (Lab)]

I congratulate my hon. Friend on securing this important debate. Like others, I was not aware of this condition until I was contacted by my constituent Jo, who has bravely shared her story widely. I am grateful that she has done that. However, one of the things that Jo wanted to have raised today is that a recent report by Edinburgh University indicated that patients in Scotland can wait up to 20 years for diagnosis, and that when they are diagnosed—if they are diagnosed—they then, as my hon. Friend has said, face a very difficult journey in trying to find care, help and medical treatment. They often have to come south of the border for that treatment and pay for it privately. I echo my hon. Friend’s point about finding a pathway for people with these conditions, and I hope that today’s debate leads to one.

[Douglas McAllister (West Dunbartonshire) (Lab)]

rose—

[Josh Newbury]

I give way to my hon. Friend.

[Douglas McAllister]

I congratulate my hon. Friend on securing this debate. In Scotland, one third of those living with EDS or hypermobility spectrum disorder are living with at least one long-term, serious condition. A number of my constituents contacted me in the lead-up to this debate to share their stories. They all repeated the same experience of delayed or overlooked diagnosis, which led to unnecessary pain and distress. Does my hon. Friend agree that this is a UK-wide issue that requires earlier diagnosis, better awareness and integrated care to improve people’s outcomes and their lives?

[Josh Newbury]

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.

[Uma Kumaran (Stratford and Bow) (Lab)]

The point about being dismissed is one I have heard time and time again from my constituents. They are being passed from pillar to post, repeating the same stories again and again, and not being believed or heard. When someone is living with a chronic and lifelong condition, that further adds to their distress. The rare diseases action plan, published earlier this month, sets out the importance of increasing awareness of rare diseases among professionals. Does my hon. Friend agree that we can only shift health services towards prevention through early diagnosis if healthcare teams are equipped with that knowledge from the beginning, and that underdiagnosed diseases like Ehlers-Danlos should be at the heart of that?

[Josh Newbury]

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.

[John McDonnell (Hayes and Harlington) (Lab)]

I apologise; this is one of those days when multiple debates are going on, on each of which I have received representations from constituents, so I will have to speak and leave. The point my constituents have made to me is exactly as my hon. Friend sets out, which is that we want a comprehensive strategy. We know wonders cannot be worked overnight, but we want a timed and programmed strategy that addresses the agenda of issues that he has raised, and to give hope to people as well. Where the Government develop strategies—for example, on cancer—we are having breakthroughs and success in terms of diagnosis and treatment. I hope that this debate will confirm that the Government are willing to develop a strategy, and of course resource it.

[Josh Newbury]

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.

[Several hon. Members rose—]

[Gill Furniss (in the Chair)]

Order. I remind Members that they should bob if they wish to be called in the debate. We are hoping to give everyone five minutes, but we will see how we go.

13:49

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

It is a pleasure to serve with you in the Chair, Ms Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for securing this debate, which I have been asked by a number of constituents to attend. I would like to talk specifically about what it is like to live with Ehlers-Danlos syndrome in Cornwall, a rural and coastal area with the sea on three sides and only one acute hospital, which is in my constituency.

One constituent described moving from Kent to Cornwall a few years ago and finding that the services for patients with EDS in Cornwall were “virtually non-existent”. They were initially able to access care at the dysautonomia clinic in Derriford in Devon, but that has since closed with no successor. That has meant that my constituent has spent nearly £1,000 since December on appointments and travel to see private consultants. Many constituents told me that physiotherapy has helped them, but they have experienced long waits and found that there is a shortage of professionals experienced in the condition in the duchy. One told me that because of the lack of occupational therapists in Cornwall, he can have an OT appointment only every six months. Another said that they simply could not get treatment by a physio equipped to deal with EDS.

That lack of service leads patients in Cornwall to rely on their GPs, who may have patchy knowledge of the condition and are not necessarily equipped to deal with such complex issues. The lack of provision for EDS patients in Cornwall has even led some to move or consider moving up-country.

Our peripherality does not help with diagnosis times either, which is the second thing I want to touch on. Many constituents have written to me describing years of misdiagnosis and missed opportunities. One woman waited 10 years from the start of her symptoms and was finally diagnosed in London. A constituent with CCI was diagnosed by surgeons as far away as Spain and New York. A third constituent was diagnosed at 48 after many years of unexplained symptoms. Echoing what we heard from my hon. Friend the Member for Cannock Chase, she said:

“Over the years it took to get my diagnosis I felt that I was viewed as a hypochondriac or overanxious patient. The combination of multiple GP visits and not being believed had a…detrimental effect on my wellbeing and mental health. Even after diagnosis I continue to be frustrated by trying to engage with a…system that doesn’t work for people with this condition”.

A key issue highlighted was disjointed care. As EDS is a multi-system condition, every time a new body system develops an issue, the patient needs a new referral. As there is no care pathway for EDS and patients generally do not have access to a specialist, who could consider their symptoms as a whole and provide a joined-up treatment plan, that means multiple referrals, extra appointments, more travelling and more time off work—and therefore, more patients seeking private care.

My constituent Carley, who has EDS and CCI, had to fundraise and take out loans for her private surgery to relieve the pressure in her brain that was forcing the back of her cerebellum to herniate down into her spinal canal. She had been experiencing severe and progressive neurological symptoms, but was unable to access appropriate assessment and treatment through current NHS pathways. In her words:

“I developed intense pain in my head and neck that would make me physically sick, trouble standing, walking, swallowing, breathing, I was losing my vision. I was choking on food…as it was getting stuck in my throat due to my swallow reflex being affected. When I tried to lay down my skull would slide backward, and I would stop breathing. It was terrifying. I was getting intermittent body paralysis and many more equally terrifying symptoms. My bladder and bowels were not working properly & in most cases this condition then leads on to seizures. Nobody knew what it was or how to help me.”

I want to show a picture of the operation Carley had to secure her spine, because it is so shocking.

It would help all of my constituents considerably if the Department looked at developing a clear, accessible and appropriate pathway for patients. Does the Minister accept that patients with EDS and suspected CCI are in reality unable to access appropriate assessment or treatment through current NHS pathways? Will the Department commit to developing a clear, accessible and clinically appropriate pathway for those patients?

13:54

[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?

13:59

[Uma Kumaran (Stratford and Bow) (Lab)]

It is a pleasure to serve under your chairship, Ms Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for setting out so powerfully why this debate is needed. I pay particular tribute to his point that the last time we had this debate, an early election was called soon afterwards. I also take this opportunity to welcome the Minister to her place. It is fitting that she is in the role, and I know she will bring her unparalleled empathy and care to it.

I am here on behalf of my constituent Rebekah and all those residents of Stratford and Bow who wrote to me to show their support for those affected by Ehlers-Danlos syndromes. As my hon. Friend the Member for Cannock Chase said, EDSs are complex genetic tissue disorders that are lifelong, incurable and chronically under-recognised. So-called rare diseases such as EDSs are in fact common in the UK: one in 17 of us will be affected by a rare condition at some point in our lifetimes. I would like to pay tribute to my mother’s sister, Chandra Ratharanjithan, who passed away last night due to a rare cancer. She fought it with grace and dignity.

Even when people access diagnosis, they do not always get the right care. For those with EDSs, these lifelong conditions will have a different impact over time. Symptoms change and develop, and we need to do more to ensure that those with chronic complex conditions are able to get the right care—responsive, joined-up care that is accessible to them and near their homes.

I am pleased to say that such work is already happening in Stratford and Bow. North-east London has one of the fastest-growing populations in the country. Although funding is not keeping pace with that change, east London is still taking innovative approaches to ensure that we can support patients with the complexities of lifelong conditions. Hospitals and research institutions in our part of the world are developing neighbourhood-based multidisciplinary teams that can be more proactive and that are more integrated in primary care. That is alongside local hospitals focusing on proactive community outreach for those with complex conditions. I extend an invitation to the Minister to come and see that fantastic work in person.

There is so much more to do to ensure that such care reaches every person in the United Kingdom who needs it, with a shift to a system of prevention, early diagnosis and swifter treatment. Those are all essential to make sure our health system finally delivers for not only those living with EDSs but everyone living with chronic or lifelong conditions.

I hope the Minister will set out how the Government’s 10-year health plan will support improved access to the kind of joined-up multidisciplinary care that is so beneficial to those with multi-system conditions and symptoms. For Rebekah and everyone else affected by EDSs, these powerful conditions can impact every single aspect of their lives. They also impact not only the person living with the condition but their families and all those who love them. We owe it to them to deliver change in this Parliament.

[Gill Furniss (in the Chair)]

We are doing quite well for time, but we need to finish Back-Bench speeches by 2.28 pm so that we can—as I am sure we want to—get the winding-up speeches and the Minister in.

14:02

[Lee Anderson (Ashfield) (Reform)]

It is a pleasure to serve under your chairship, Ms Furniss. Huge thanks go to the hon. Member for Cannock Chase (Josh Newbury) for securing this debate about Ehlers-Danlos syndrome, a condition I had never heard about until this Session of Parliament.

Just a few months ago, a young lady came to see me in Ashfield. Hannah is 17 years old and has the condition. She asked me to take part in this debate, so I am here to speak up on behalf of Hannah in Ashfield—she is, by the way, not the only person in Ashfield who has contacted me about this condition.

I asked Hannah to make a diary of her typical day, to see how her condition affects her. I know she will be watching this debate. These are her words, and I will read them out exactly as she has printed them:

“Every day I live with pain and joint instability in most areas of my body, especially my back, neck and legs. Painkillers don’t work for me, and I can’t get a physio referral as my whole body is affected and there isn’t a service for what I need as I am still classed as a child. Therefore, I get no support. 

I am fully dependent on others to get around as I can’t self-propel my wheelchair due to frequent shoulder dislocations and lack of grip. I am still waiting to be seen by wheelchair services and have been on the waiting list for 18 months. My chair was brought by my parents but is no longer fit for purpose. I am not eligible for an electric wheelchair as I am classed as an ambulatory user. So, at 17 years old I am reliant on others completely to get around.

Due to my chronic fatigue and POTS I have to pace myself. I cannot go to college as it is too much for me and therefore have to be home educated. Even with pacing I spend a lot of time in bed due to pain and exhaustion. I am probably up and about a few hours a day every other day.

I can’t do much for myself as I have tremors and spasms in my hands, face and legs. I can’t cook safely, I have been refused my provisional driving licence due to my double vision, and I can’t go out independently because I can’t walk far. 

Health services don’t understand EDS and I get dismissed a lot. I fall between the gap of children’s and adult services so get no support. This has an impact on my mental health and wellbeing as I feel overlooked and undervalued. Social care gives me 110 hours per year (2 hours per week) to spend on a support worker to go out, but the payment for this is £84 per month. So, the reality is that this gives me just over 1 hour a week if I was to pay someone the NMW. I am awaiting a review but there is a waiting list which I have been on for 6 months.

I just want to be more independent, in less pain and be able to socialise with my friends but this is impossible. I have a couple of very good friends, but they are busy with their lives doing things that I can’t do. I am very isolated with nothing to help me. My health is deteriorating all the time, and I worry for my future.”

Those are the words of Hannah from Ashfield. As we can see, her main concerns are a lack of wheelchair access, a lack of services and a lack of understanding. She is now on a waiting list for social care support, and she has been told that she will not be contacted until June 2026 to even start the process.

Unfortunately, over the past week, I have heard from a few other constituents; they also asked me to attend this debate, but I am here on behalf of Hannah. She has been let down by a system that we in this room control. We are responsible for that system; we are lawmakers and legislators. If we cannot alter the system to help people like Hannah, we should not be here. My one ask of the Minister today is to give hope to Hannah and the rest of the families in this country who suffer from this awful condition.

14:07

[Liz Twist (Blaydon and Consett) (Lab)]

It is a pleasure to serve under your chairship, Ms Furniss. I congratulate my hon. Friend the Member for Cannock Chase (Josh Newbury) on securing this important debate.

Over recent years, I have been contacted by a number of constituents with EDS, many of whom have severe health issues because of the condition. Indeed, many constituents have asked me to speak in this debate. A member of my staff team suffers with EDS, and with her permission, I can say that I have seen over recent years just how it has affected her, and how it has progressed.

Ehlers-Danlos syndromes, also known as EDS, have a profound impact on people’s lives, from chronic musculoskeletal pain and exhausting chronic fatigue to severe gut issues, allergic responses and immune system dysfunction. As we have heard, EDS has for a long time been considered a rare disease, which means that fewer than one in 2,000 people are either diagnosed or very likely to be diagnosed with it. As a recent former chair of the all-party parliamentary group on genetic, rare and undiagnosed conditions, I have had the opportunity to meet and speak to support groups for people with this condition about their experiences. However, a 2024 study of 300,000 GP patients in Northumberland found that as many as one in 250 people might have some form of hypermobility stress disorder—that is just those with a diagnosis. The true prevalence has been estimated at between 1% and 4% of the population.

Getting a diagnosis is a massive challenge for those with EDS. For some patients, it can take between 10 and 23 years after the onset of symptoms to get a diagnosis—that is up to 23 years of pain and fatigue before they can even start to manage the condition.

[Cameron Thomas (Tewkesbury) (LD)]

I thank the hon. Member for Cannock Chase (Josh Newbury) for securing the debate. I have several constituents with EDS, one of whom is a young lady who has suffered from malnutrition, regular hospital visits and frequent misdiagnoses. She now lives in a hospital bed in her parents’ living room, fed through a tube. She cannot get the care she needs, because it is not available on the NHS, which means her parents have to raise money to take her overseas for treatment. Will the hon. Lady join me, as so many other Members have, in calling for a clear treatment pathway for people with EDS?

[Liz Twist]

I will of course join the hon. Member in that, as he will hear at the conclusion of my speech.

Because of those delays in diagnosis and the lack of early management, patients are deteriorating more quickly and ending up on neurosurgery waiting lists, when much more could have been done at an early stage. Patients are losing their ability to exercise, play with their kids, go out on a weekend or, in some cases, work altogether. There is a huge cost for those with EDS in not just physical terms but social and life terms, and there is a huge cost to our NHS and the local economy.

I know from the experience of one of my members of staff the very real impact these conditions have on people’s everyday life. I now know that what once seemed to be idiosyncratic physical movements are part of their long-term impact, affecting everything—even her eyes, ears and nose. In the past two years, EDS UK petitions have gathered more than 33,000 signatures. In Wales, that has led directly to the co-creation of a primary care pathway, and we are now asking that England follows that lead.

EDS and HSD do not exist in a vacuum. Many patients find that the condition overlaps with other conditions, such as postural tachycardia syndrome, mast cell activation syndrome, myalgic encephalomyelitis, chronic fatigue syndrome and gut issues. Those overlapping conditions have an exponential impact on patients who are just trying to manage their everyday life. Under the current system, patients are bounced between different and disjointed secondary care specialties that do not communicate or understand the full breadth of the issue, having been forced to leave primary care practitioners who do not have the support they need to manage these complex patients. EDS UK has called repeatedly for a co-ordinated and multidisciplinary approach to this issue that is integrated across primary and secondary care to support both NHS staff and patients to manage the overlapping comorbidities safely and efficiently.

I want to ask the Minister the following questions. First, will she commit to commissioning National Institute for Health and Care Excellence guidelines for Ehlers-Danlos syndromes, and will the Department look to the primary care pathway recently co-created in NHS Wales as a blueprint for England? Secondly, what steps is the Department taking to establish co-ordinated cross-speciality multidisciplinary teams in secondary care so that patients with complex overlapping conditions such as EDS, PoTS and ME-CFS are no longer left in limbo? Thirdly, what steps is the Department taking to reduce the waiting times for patients with suspected EDS and to get them support and mitigation while symptoms are still in the early stages, which would lead to a faster diagnosis? Finally, given the extreme complexity of the conditions and the risk of spinal fusion for EDS patients, will the Minister back the creation of a national multidisciplinary neurosurgery team for CCI to ensure rigorous peer review and safe patient care?

We are talking about patients who have been suffering for up to 23 years before even getting a diagnosis. They have been repeatedly failed by a system that is not designed for them and does not understand them. It is time that this issue was treated with the seriousness it deserves.

14:14

[Rachel Gilmour (Tiverton and Minehead) (LD)]

It is a pleasure to serve under your chairmanship, Ms Furniss. I thank the hon. Member for Cannock Chase (Josh Newbury), who I would also be proud to call my hon. Friend, for bringing this debate to Westminster Hall. I do not think there is a single elected person sitting in this Chamber who does not realise what a wonderful privilege it is to represent all our constituents. But a day like today, when we have an opportunity to change the lives of people who suffer from EDS, is a particularly privileged day. I hold that thought at the front of my mind, and thank all Members for coming.

A few weeks ago I met one of the most brave, beautiful young women I have met in a long time. Her name is Stevie, and she lives in Willand, which is in the Devon part of my constituency. She came to see me, but she was quite worried about it because she had never been to see an MP before—there was a degree of trepidation. But she was so eloquent, passionate and determined to tell me about the impact that this dreadful disease had had on her life, I had no option but to come here today to repeat her words.

Like many of the constituents who have been mentioned, Stevie had to raise her own funds to get diagnosed and have the treatment. She was housebound and bedbound, and had to give up work. She has a wonderfully supportive husband who goes out to work six days a week to support her and their two young children, who happen to be autistic. What a beacon of honour and bravery—I just cannot imagine how she lives on a day-to-day basis.

Those with EDS have been left to suffer without the structures needed to make timely, evidence-informed decisions. Patients are not asking for predetermined outcomes or routine surgery; they are asking for recognition that suspected craniocervical instability in Ehlers-Danlos syndrome requires a defined process for assessment and management within the NHS.

Of Ehlers-Danlos Support UK members, 92% are not able to work because they are so affected by the condition. Almost half of those people were working, but had to give up entirely because of the syndrome’s debilitating impact. This is not just about people’s lives and their mental health; it is actually about supporting our country and enabling people with this syndrome who do want to work to make a contribution.

Rather than leaving patients to deteriorate to the point of having to consider neurosurgical options, there should be an early diagnosis. As many colleagues have said, establishing a specified EDS care pathway makes the case for itself. Earlier intervention would improve quality of life and strengthen the economic health of the country by enabling people with EDS to remain in work—like the member of staff of the hon. Member for Blaydon and Consett (Liz Twist).

It is true that the Department of Health and Social Care’s recognition of the complexity of EDS and the low awareness surrounding it is a step in the right direction. But I believe the central ask of this Government and the Minister is to heed the collective call from across the parties for a defined diagnostic and care pathway.

14:18

[Peter Prinsley (Bury St Edmunds and Stowmarket) (Lab)]

It is a pleasure to serve under your chairship, Ms Furniss. I was not going to talk in this debate until last week, when a lady came to my surgery at Bury St Edmunds. I used to hold surgeries all the time for patients with ear, nose and throat disorders; now I hold surgeries for constituents who come with political difficulties. This young lady was in a wheelchair, and told me she had Ehlers-Danlos syndrome and that she had been to Germany to get a diagnosis, after many years of failing to get one in this country.

Ehlers-Danlos syndrome is a disorder of the protein that is involved in the making of the connective tissue—which is the tissue that joins us all together—particularly the elastic bits. When I was a medical student there were four types of Ehlers-Danlos syndrome, and it was quite a favourite topic for examine questions. But now I see from the Ehlers-Danlos Society that there are 13 recognised types of the syndrome. We always thought of it as the double-jointed disease, and one would loosely test it by seeing whether someone could take their thumb and put it against the side of their arm—I increasingly cannot even get mine to a right-angle now.

It is a rare disorder. To give hon. Members a flavour of the different sorts of Ehlers-Danlos syndrome, there is a hypermobile Ehlers-Danlos, which is the double-jointed person. That is about one in 5,000 people. The classical Ehlers-Danlos, which is where people get this very stretchy skin that kind of falls away, is about one in 20,000 people. The really frightening Ehlers-Danlos syndrome is the one that affects the lining of the blood vessels. The blood vessels have an elastic lining, and if the elastic lining fails, they begin to expand, causing aneurysms. The most frightening aneurysms are those of the main aorta, which in some patients can rupture, leading to sudden death. They can occur all over the body, however, and therefore cause all sorts of curious neurological or gastrointestinal symptoms depending on where the aneurysms are happening. That is about one in 100,000 people. There is even a dental Ehlers-Danlos syndrome, which causes the teeth to loosen and fall out. That is about one in a million people.

Given that there are many different types of Ehlers-Danlos syndrome, it is not surprising that it can be difficult to diagnose. To diagnose something, one has first to think of it. In my long career as an ENT surgeon, I saw very few cases, but I am certain that I missed many cases. I did some brief research into ear, nose and throat surgery and Ehlers-Danlos, and there is a particularly frightening situation that occurs in patients who need to have their tonsils out. Ehlers-Danlos syndrome is associated with this instability of the neck vertebrae—the cervical vertebrae; the axis and the atlas bones. When one does a tonsillectomy, one anaesthetises a patient and tips their head right back to open the mouth as wide as one possibly can. I saw a report from 2013 by Agarwal of a child who developed quadriplegia after a tonsillectomy. The tonsils were taken out, and when the child woke up, the arms and legs would not move, because the spinal cord had been compressed by the subluxation of the vertebrae.

Diagnosis is difficult, and we must first think of it. We should do what we can to educate people, particularly clinicians in medical schools and nursing schools, and even the general population. A debate such as this is certainly helpful in that respect. Research is essential. Specific genetic mutations are associated with many of the varieties of Ehlers-Danlos syndrome—sadly not the most common sort, but certainly many of the other sorts. The Minister may know that there is a proposal for universal genome sequencing of newborns and young people in this country. I do not think that future generations will have this problem of odd clinical symptoms accumulating over decades before somebody works out what has happened, because in future, people will be able to access their genomes. We will be able to predict what will happen.

However, just because we can predict it and identify the genes that are causing it, that does not mean that we will come up with magic treatments. We will certainly need to provide services for all the people with this condition into the future. Diagnostic pathways and well-organised arrangements for the clinical care of people with this presently completely incurable condition are essential.

14:24

[Dr Danny Chambers (Winchester) (LD)]

It is an honour to serve under your chairship, Ms Furniss. I thank the hon. Member for Cannock Chase (Josh Newbury) for securing this important debate. Many people have to come watch in the Public Gallery, and I do not underestimate how much effort that will have taken some of them. We really do appreciate them being here today. We have heard from everyone the frustration of having a relatively rare disease with non-specific clinical signs, meaning that so many patients have been waiting years and years, in awful situations, even to get a diagnosis. What we are equally upset about is that once they have a diagnosis, the support is not available to ensure that they live the most fulfilled life possible or even, in many cases, get the most basic care that they require. On that note, I commend the hard work of EDS UK in supporting and providing training for clinicians and healthcare professionals and campaigning for standardised guidance, improved NHS services and clinical pathways to meet the needs of EDS patients.

The lack of national policy has left a postcode lottery for EDS patients across the country. This is another NHS area suffering the frustratingly long diagnostic delays and lack of joined-up, multidisciplinary care that we see for certain conditions. That means that people are battling with the unexplained symptoms and pain of EDS all through childhood, and that those patients have often been told repeatedly that their tests are normal and their symptoms must be psychosomatic. It means waiting decades for an overarching diagnosis for multiple complaints and being stuck in a system that incorrectly believes that EDS is a very rare condition rather than a realistic possibility. I was interested to hear my friend the hon. Member for Bury St Edmunds and Stowmarket (Peter Prinsley) acknowledge that he probably has treated patients with this disease, having not recognised it, which is something that we are all guilty of sometimes with rarer diseases.

Diagnosis is only the first step. Care is too often fragmented or non-existent, and patients struggle to get a GP appointment in the usual 8 am scramble. As a result of fragmented care, those with EDS are left to manage their own symptoms, unable to access a holistic and collaborative point of care. For many, a huge part of the burden of living with EDS comes from the lack of awareness of the condition. Unlike the situation for more visible disabilities, employers, schools and even friends and family are too often unaware of the debilitating and changing nature of this condition. Negotiating accommodations or seeking disability benefits for a condition that is little understood and largely invisible presents a huge challenge.

People with EDS and those around them need clear guidance on the nature of the condition. A constituent of mine in Winchester, Dr Emma Reinhold, worked as a GP in the local community, where she became increasingly aware of EDS, with its commonly associated conditions, and how they were overlooked. That led to her development of the EDS toolkit, written in conjunction with the Royal College of General Practitioners and funded by EDS UK. That toolkit is incredible and has been shared all over the world. I first heard about it when I was knocking on doors and she popped her head out of her upstairs window to say hello. We spoke about the toolkit for about 20 minutes—me on the street and her up in her bedroom. She had been a GP in Winchester for many years and then she became seriously unwell with EDS, which was why she was at home. That was at the age of just 42. Like so many others, she had to stop working; eventually, she had no option but to take ill health retirement, so the NHS lost another GP far too soon.

One patient who Dr Reinhold told me about—I think it was through that window conversation—was a woman who was in her 70s when she finally got the diagnosis that she had been looking for over many years to explain her symptoms. This is a genetic condition that she had had since birth, but it took 70 years to ensure that she got the answers that she deserved and appropriate support for her many symptoms.

Emma’s open access toolkit on EDS—for anyone who is interested, it is worth googling—ought to be promoted enthusiastically by the Government as a means of promoting greater awareness on the part of all medical professionals, as well as better understanding and sensitivity on the part of everyone, so that we can ensure that all those with EDS and other hidden disabilities remain welcomed and cared for in education, the workplace and their day-to-day lives. Dr Reinhold explains that we need a co-ordinated, holistic approach to multisystem conditions such as EDS, rather than the current disjointed care that facilitates diagnosis falling into gaps between specialists, who do not always have the collective training to spot connections between apparently unrelated symptoms.

Patients need national leadership, so we urge the Government to address the policy gap by working towards joined-up, multidisciplinary care across primary and secondary services, as well as supporting and promoting the existing training for staff, to ensure that those with EDS can access the care that they deserve. EDS and HSD must be integrated into NHS service specifications and long-term condition strategies as a matter of urgency.

The Liberal Democrats want everyone with a chronic illness, including EDS, to have a named GP. That would improve their quality of care and allow better join-up between the range of services that they can access. We must champion the work of the Overlapping Illness Alliance and EDS UK to raise awareness of these often hidden conditions so that those in need of support are able to access it.

Before the last general election, Ministers from the former Government offered to meet EDS UK, and then the election was called so the meeting never happened. Will the Minister commit to meeting EDS UK and patients, including Dr Reinhold, to better understand what would be helpful to improve their outcomes?

14:30

[Mr Andrew Snowden (Fylde) (Con)]

It is a pleasure to serve under your chairship, Ms Furniss. Given that this is a debate about a health condition that has a crippling impact on people’s lives, I beg the indulgence of the House to be allowed a moment for a personal diversion. Today is also International Epilepsy Day, and epilepsy is a condition that also impacts many of our constituents. My sister, Kimberley, grew up coping with it as a young girl in primary and then secondary school. The condition causes uncontrolled fits and seizures. Sufferers cannot go about their daily life the same way, and there are many other unpleasant and personal side effects that I will not disclose because I do not want to embarrass Kimberley.

I saw at first hand the impact of living with that condition on my sister and the family. I distinctly remember the day that I was stood outside as she was effectively having her skull removed to have the cavernous angiomas that caused the epilepsy removed from her brain. The family went on a difficult enough journey with a well-known and well-established condition with pathways in place, so I can only imagine what it is like to go through something equally painful and life changing without clear pathways, a clear understanding and a clear recognition of what the condition is when talking to other people. My wife suffers with Crohn’s and colitis, which is an often misunderstood condition. People do not understand the daily pain and suffering.

I am grateful to the hon. Member for Cannock Chase (Josh Newbury) for securing this important debate and for the way he has brought the experiences of people living with EDS and CCI to Westminster Hall. We have heard the personal stories of Connor, of Hannah from Ashfield, and of other constituents who have contacted their Members. We also had an excellent explanation of the condition from the hon. Member for Bury St Edmunds and Stowmarket (Peter Prinsley). It felt like listening to a mini-podcast. In politics, we go to many events and debates without learning anything, but everyone in the Chamber can say that we learned something today.

This debate matters, because it speaks to the experience of people who too often feel unseen by the system. For too many people living with EDS, the challenge is not only the condition itself but the exhausting struggle to be recognised, to be diagnosed and to get the care and support that they need. Too many patients face long delays before diagnosis, too many encounter limited clinical awareness, and too many are left navigating fragmented care across multiple services. They are passed from one part of the system to another without anyone taking real ownership of their care.

Complexity in a patient should not mean confusion in the system, yet for many people with EDS, that is still the reality. For those living with CCI, the picture can be even more difficult. Patients and families describe serious problems not only in getting the condition recognised but in accessing the specialist assessments, imaging and care needed to understand what is happening to them. That can leave people facing delay, uncertainty and, in some cases, the sense that there is simply no clear pathway available to them in the NHS.

The consequences are serious. Delays in diagnosis can mean worsening symptoms, loss of mobility, deteriorating mental health and patients being left to navigate a system that is not designed with them in mind. The previous Conservative Government recognised the wider challenge facing people with rare diseases through the rare diseases framework and subsequent action plans. Those rightly focused on earlier diagnosis, improving awareness among clinicians and delivering more co-ordinated care. That was the right direction of travel, but it is clear from what we know, from what we have heard today, and from experiences raised repeatedly by patients and campaigners, that too many people still do not feel that the system is working for them.

The Government will point to neighbourhood health centres, multidisciplinary teams and personalised care plans. Those ambitions may sound encouraging, but for people with EDS and CCI, the key question is whether those commitments will translate into practical change: earlier diagnosis, clearer pathways and access to co-ordinated specialist care, including for those with the most complex presentations.

I hope that the Minister can address a number of important points. First, what steps are being taken to improve awareness and understanding of EDS among frontline clinicians, particularly in primary care? Secondly, if integrated care boards remain responsible for commissioning services, how will the Government ensure that patients do not face a postcode lottery in access to diagnosis, specialist input and ongoing care? Thirdly, on CCI, can the Minister set out what work is being done to improve clinical understanding, diagnostic pathways and access to appropriate imaging for those with more complex presentations? Finally, given that the Department has acknowledged significant delays to diagnosis, what assessment has been made of the gap between the Government’s ambitions and the lived reality of patients today?

People with rare and complex conditions should not have to become their own care co-ordinators just to be heard. People living with EDS and CCI deserve earlier recognition, better co-ordinated care and the confidence that the NHS will respond to complexity with competence and compassion.

14:37

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

It is a pleasure to serve under your chairmanship, Ms Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for securing this very important debate and for his excellent opening speech, in which he took great care to set the scene for us. I appreciate that.

My hon. Friend has been instrumental in bringing national attention to the challenges faced by people living with Ehlers-Danlos syndrome and craniocervical instability. Last year my predecessor in my role, my hon. Friend the Member for West Lancashire (Ashley Dalton), met him and his constituent, Connor Edwards, who has suffered greatly, as we have heard, from the impact of these devastating conditions. Connor has faced immense physical and emotional hardship as he has tried to navigate symptoms linked to EDS and CCI, enduring pain, uncertainty and long waits for answers, as we have heard. His experience reflects what too many patients and families have told us: that the system can feel fragmented, that they are often left to join up their own care, and that the lack of clear pathways can add to an already overwhelming burden. I want to assure Connor and others in his position that their voices have been heard.

[Dr Neil Hudson (Epping Forest) (Con)]

I thank the hon. Member for Cannock Chase (Josh Newbury) for securing this important debate. I apologise, Ms Furniss, that I was not in the Chamber for the beginning of it; my shadow ministerial role in relation to the Department for Environment, Food and Rural Affairs meant that I had to be in the main Chamber at the start of this debate.

Will the Minister join me in paying tribute to patients with Ehlers-Danlos syndrome and craniocervical instability—including my constituent in Epping Forest, Natasha Little—for their bravery and their advocacy in calling for the Government and the NHS to recognise the needs of people with these conditions, in terms of diagnosis, treatment and long-term support? Hopefully, this debate can be a catalyst for change.

[Mrs Hodgson]

I thank the hon. Gentleman on behalf of his constituent, Natasha, and I will make sure that I include her name later when I come on to name everyone referred to during the debate. I also thank him for managing to juggle and spin all the plates that we have to deal with as Members by making time to come along to this debate.

I also thank all the other hon. Members who managed to make it to this very important debate. We heard contributions from my hon. Friends the Members for Hitchin (Alistair Strathern), for Glasgow West (Patricia Ferguson), for West Dunbartonshire (Douglas McAllister), and for Stratford and Bow (Uma Kumaran); from my right hon. Friend the Member for Hayes and Harlington (John McDonnell); from my hon. Friend the Member for Truro and Falmouth (Jayne Kirkham); from the hon. Members for Strangford (Jim Shannon) and for Ashfield (Lee Anderson); from my hon. Friend the Member for Blaydon and Consett (Liz Twist); from the hon. Member for Tiverton and Minehead (Rachel Gilmour); from my hon. Friend the Member for Bury St Edmunds and Stowmarket (Peter Prinsley); from the hon. Members for Winchester (Dr Chambers) and for Epping Forest (Dr Hudson); and from the spokesperson for the Conservatives, the hon. Member for Fylde (Mr Snowden).

I also thank the hon. Member for Fylde for sharing his learnings from the experience of his sister, Kimberley, on her journey in treatment for epilepsy. As he explained, epilepsy is a well-known condition, especially in comparison with the conditions that we are discussing today. That was a very strong point, which I thank him for making.

I will not repeat the detailed clinical descriptions of Ehlers-Danlos syndrome and craniocervical instability that other hon. Members have already set out very clearly, but I do want to recognise the real and often profound challenges that people living with these conditions, and their families, face every day. I want those individuals to know that I hear them, and that I recognise the challenges they face and the uncertainty and distress that many describe. Their experiences will shape the Department’s ongoing work as we consider how services can better meet the needs of people living with these complex conditions.

NHS England continues to strengthen clinically led pathways for people with hypermobility-related disorders, with an emphasis on non-surgical management, co-ordinated physiotherapy, and pain management and rehabilitation, as is consistent with the best available evidence.

In response to the question from the hon. Member for Strangford about the number of people affected by these conditions, the Getting It Right First Time programme is supporting more consistent assessment and management of complex joint and spine conditions, and assessment of the number of people affected, helping to reduce the unwarranted variation in treatment that particularly affects people with EDS. The programme has a strong emphasis on robust, evidence-based and personalised pathways. Through RightCare, integrated care systems are supported to commission evidence-based pathways for long-term and complex conditions, including improved access to community-based musculoskeletal care, which many people with EDS rely upon.

My hon. Friend the Member for Blaydon and Consett mentioned some numbers in her contribution, quoting a ratio of one in 250 and saying that between 1% and 4% of the population are affected. I would imagine that those are the ballpark figures, but the Getting It Right First Time and RightCare programmes, which I have just mentioned, will look into that in more detail.

How can we facilitate better care and support? We need better clinical education, clearer referral routes and a stronger emphasis on shared decision making. We also need to recognise the burden of chronic pain and fatigue that comes with these conditions, and ensure that people can access appropriate services, even when a definitive single diagnosis may still be evolving. Where the evidence is established, the NHS should provide timely, appropriate care. Where evidence is uncertain, we have a responsibility to be transparent about what is known, what is not known and what options are supported by clinical consensus.

Patient safety must always be paramount, and decisions about invasive treatments must be made within appropriate specialist teams, with robust clinical governance, multidisciplinary review and clear plans to follow up. EDS illustrates why integrated care matters. Pathways must connect primary care, community therapy services and specialist support so that patients do not have to tell their story over and over again, or navigate multiple disconnected services.

Stronger evidence is also imperative. The Government support health research through the National Institute for Health and Care Research, and we want to see well-designed studies that can inform future guidance and reduce unwarranted variation.

[Josh Newbury]

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?

[Mrs Hodgson]

I am happy to recommend that international best practice is looked at, and I will take that on board. I will also come to the suggestion from my hon. Friend the Member for Blaydon and Consett about the international best practice that we can learn from in Wales.

Guidance matters too, and clinical guidelines and service specifications help reduce variation and improve quality. My hon. Friend the Member for Blaydon and Consett asked about NICE guidance. Where NICE guidance exists, the NHS is expected to take it into account, and where it does not, we should consider what other guidance can support clinicians and patients in the interim. I commit to asking the NICE prioritisation board, chaired by its chief medical officer, if it will look at the Wales pathways that she suggested when it considers updating NICE guidance.

My hon. Friend also asked about multidisciplinary teams. NHS England, along with the neurosurgery and spinal surgery clinical reference group, has not currently identified a need for an MDT. NHS England has established clinical networks for spinal surgery and neurosurgery, and we expect those networks to work closely to ensure that both cranial and spinal pathways are optimised.

I was also asked about a pathway by my hon. Friend the Member for Truro and Falmouth. There is currently no separate national diagnostic or treatment pathway for CCI because it is not recognised as a distinct NHS diagnosis, and there is no agreed national definition, validated imaging criteria or robust evidence base to support creating one. However, the Department recognises the concerns that patients have raised, and we are working with NHS England, clinical networks and patients’ organisations to improve pathway consistency by strengthening the existing framework, so we will look further into that.

[Jayne Kirkham]

I understand that the Department will be looking at it further, but will it be looking at it further with the intention to create a pathway for CCI?

[Mrs Hodgson]

Yes, I would imagine that if the Department looks at it and it is deemed necessary, that is what will happen. I am sure that my hon. Friend can follow up on that as time progresses.

I will cover the last couple of questions from hon. Members. My hon. Friend the Member for Truro and Falmouth, the hon. Member for Ashfield and my hon. Friend the Member for Stratford and Bow made points about access to care and ensuring that people do not fall through the cracks. EDS and CCI often require input from rheumatology, neurology, pain services, physiotherapy, genetics and primary care, and the 10-year health plan’s emphasis on integrated multidisciplinary care models will help to join up those pathways for the first time. That will reduce repeat referrals and conflicting advice, and patients feeling that they must be the ones to join up the system. We will hopefully see progress on that through the 10-year plan.

The hon. Member for Ashfield also asked about wheelchair services. In England, they are commissioned locally by ICBs and eligibility is determined by functional need, lifestyle and clinical assessment, not by whether a patient has a specific condition such as EDS or CCI. NHS England has developed a model service specification for wheelchair and posture services that sets clear expectations for timely assessment, appropriate prescribing and user-centred provision. That specification enables commissioners to organise consistent, high-quality services that meet individual mobility needs, including those arising from complex conditions such as EDS and CCI, so I was keen to give the hon. Member an answer to that particular question.

The 10-year health plan sets a clear direction for improving outcomes for people with EDS and those experiencing symptoms associated with CCI. The plan prioritises earlier diagnosis, better co-ordinated care and stronger multidisciplinary working across primary, community and specialist services, which are key issues consistently raised by patients and families. It promotes integrated, personalised support closer to home, reducing the burden of navigating multiple services. The plan also expands the use of digital tools, remote monitoring and personalised care planning to help people manage complex, fluctuating symptoms more effectively. Importantly, it commits to strengthening research, clinical education and system-wide awareness of overlapping, multi-system conditions, helping to ensure that people with EDS and CCI receive more consistent, compassionate and joined-up care.

Let me clear about what I can commit to as the Minister today. I will ensure that the concerns that have been raised are shared with NHS England to help identify where guidance, pathways, referral routes or clinical advice could be clearer and where good practice is already emerging internationally—as well as in Wales—that could be spread more consistently. Meaningful engagement with those directly affected must sit at the heart of our approach. Departmental officials are already in discussions with patient groups, and that ongoing engagement will be invaluable in shaping our understanding and ensuring that future policy is grounded in the reality of patients’ lives.

We will be asking the NIHR to consider how best to encourage further quality research in this area. It is already expanding its work on conditions with overlapping symptom profiles, including myalgic encephalomyelitis and chronic fatigue syndrome, and post-viral syndromes, and we want to ensure that future research programmes recognise the clear need for better evidence on diagnosis, management and outcomes for people with EDS and suspected CCI. I commit to continuing to press for a culture that is compassionate and evidence-based—one that listens to patients, avoids dismissal and false certainty, and supports shared decision-making.

[Josh Newbury]

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?

[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.

[Gill Furniss (in the Chair)]

I call Josh Newbury, with two minutes to wind up.

14:57

[Josh Newbury]

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.