Ehlers-Danlos Syndrome and Craniocervical Instability

Andrew Snowden Excerpts

Thursday 26th March 2026 Westminster Hall

[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.