Ehlers-Danlos Syndrome and Craniocervical Instability

Uma Kumaran Excerpts

Thursday 26th March 2026 Westminster Hall

[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.

--- Later in debate ---

[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.