Stranded by the system: The fight for EDS patients to be seen and cared for

Every day, as a Member of Parliament I am contacted by constituents facing urgent and often deeply personal challenges. Some are about local services, others about health or family crises, and each one is a reminder of the real lives behind the politics. The nature of the job means that some are resolved relatively quickly and wouldn’t necessarily come to mind when I’m writing a speech, for example. But some stay with you longer, quietly shaping how you think about the work we do in Westminster. One, in particular, has stayed with me for the last year.

It was from a constituent called Connor, who said he was writing in “sheer desperation”. Connor told me that he was living with Ehlers-Danlos Syndrome (EDS) and craniocervical instability (CCI) which he told me has destroyed his quality of life. In his words, his head is “slowing falling off his neck” – a chilling image but sadly no exaggeration.

To be honest, I had not heard of either condition before Connor reached out. As MPs, we are contacted about many issues, but Connor’s story was unlike anything I’d encountered.

Connor, just 25 when his symptoms first showed themselves, previously lived a full and active life. He loved fishing, cycling, and just being outdoors. But his nightmare began with a tick bite while mountain biking on Cannock Chase, from which he caught Lyme disease. As his condition worsened, he searched for answers, trying to piece together his symptoms and seek medical help. Although many doctors he saw wanted to get to the bottom of what was happening, it wasn’t until Connor raised money to see specialist in Spain that he was finally diagnosed with CCI.

There are thirteen types of EDS which all affect the collagen that supports skin, joints, blood vessels and organs. There can be many complications, including CCI, where the join between the skull and upper spine becomes unstable, placing pressure on the brainstem and spinal cord.

Through getting to know Connor and his struggles, I have learnt a huge amount about EDS and the life-changing effects it can have. Not only the painful symptoms of the condition itself, but the fight to be recognised and treated within a system that is simply not set up to see people with EDS. It is a commonly misunderstood illness, and many sufferers endure years of tests and referrals to even get a diagnosis. Connor told me his condition is often dismissed, leaving him feeling gaslit. Symptoms are misattributed and some are told they are imposing a fictitious disorder on themselves, commonly known as Munchausen syndrome. This is a reality none of us would accept for our loved ones.

Sadly, Connor’s story is not unusual. Most people with EDS and CCI are shunted into rheumatology and left without specific treatment options in the UK, so many have no choice but to crowdfund and seek treatment abroad. Our NHS was founded to make sure healthcare is free at the point of need and for many conditions, we lead the world in research and new treatments. How can crowdfunded trips overseas be the only option for thousands of people in Britain in 2026?

I have put this to the NHS leadership and been told that there is currently no established service for people like Connor. Nothing for diagnosis, joint working between clinicians, or surgery. This, alongside a multitude of hurdles to get funding for treatment abroad, has left Connor seriously unwell, deteriorating, and struggling with his mental health. He is being failed.

After raising Connor’s story during Prime Minister’s Questions, I had a meeting with the then Minister for Public Health and Prevention, Ashley Dalton. We were joined by representatives from Ehlers-Danlos Support UK and Connor’s advocate, Natasha, who have all worked tirelessly to assist my team and other EDS patients through the many barriers they face.

EDS was last discussed in Parliament nearly two years ago, and having applied for a debate to take place, I heard so many horrendous stories of people from across the country who feel abandoned. Their experiences echo the same gaps, barriers, and devastating outcomes.

My call for a debate to shine a light on this shameful reality was supported by fellow MPs from across the political spectrum. The response from the new Minister, Sharon Hodgson, who has long campaigned for people who feel unseen by the world of medicine, gave me hope that we are turning a corner. Finally, people with EDS are being listened to and I look forward to working with the Minister on the promising commitments she made.

This Government has rightly made rebuilding our NHS a top priority, and the 10 Year Plan charts a course to a more joined up, fair, and responsive Health Service. But for patients like Connor, long-term reform cannot wait. Without action now, avoidable harm, worsening disability, and irreversible deterioration could continue for many in every corner of Britain.

Let this be the moment that together, we turn the tide, close this gap, and ensure that everyone living with EDS and CCI are seen, heard and cared for.