Ehlers-Danlos Syndrome and Craniocervical Instability

Liz Twist Excerpts

Thursday 26th March 2026 Westminster Hall

[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.