Ehlers-Danlos Syndrome and Craniocervical Instability

John McDonnell Excerpts

Thursday 26th March 2026 Westminster Hall

[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.