Ehlers-Danlos Syndrome and Craniocervical Instability

Josh Newbury Excerpts

Thursday 26th March 2026 Westminster Hall

[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.

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[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—]

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[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.

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[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.

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[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.