Ehlers-Danlos Syndrome and Craniocervical Instability

Alistair Strathern Excerpts

Thursday 26th March 2026 Westminster Hall

[Josh Newbury (Cannock Chase) (Lab)]

I beg to move,

That this House has considered outcomes for patients with Ehlers-Danlos syndrome and craniocervical instability.

It is a pleasure to serve under your chairship, Ms Furness. Before I start my speech, I thank the Backbench Business Committee for granting us the time for this debate. I also thank Members from across the House who supported our application, and the clinicians, the charities and, most importantly, the patients who have shared their experiences in order to inform the debate.

Let me also take this opportunity to warmly welcome the Minister to what is still her fairly new role. I know that throughout her time in Parliament she has been a staunch advocate for people with conditions such as less survivable cancers and other rare conditions, and for people who have suffered from medical failings, such as those with pelvic mesh. Throughout those campaigns, she has above all given voice to people who feel let down and forgotten by our healthcare system, so I know that she will empathise with much of what will be said in today’s debate.

In April last year, I had an email from my constituent Connor Edwards. Connor opened his email by telling me that he was in “sheer desperation.” He explained that he was living with two conditions, Ehlers-Danlos syndrome and craniocervical instability—having pronounced them correctly, I will now refer to them as EDS and CCI.

I will be honest with the House: until that point, I had never heard of these conditions. I did not know how profoundly they affect people such as Connor, or the extent to which they are unseen in our NHS. Six years ago, Connor was 25 and living a very active life. He was a keen fisherman and mountain biker and, like many people in my constituency of Cannock Chase, he loved to spend his time outdoors, surrounded by the natural beauty that we are so fortunate to have on our doorstep.

Connor’s story with EDS and CCI began when he was bitten by a tick while he was out on the Chase and subsequently developed Lyme disease. However, it turned out that that was only the start. In seeking explanations for his worsening health, Connor had to do so much research himself. Then, after finally seeing many specialists, he was diagnosed with EDS, a connective tissue disorder that affects the collagen responsible for supporting the skin, joints, blood vessels and internal organs.

Some people living with EDS experience chronic joint dislocations, severe and persistent pain, and significant neurological complications. One of those complications in cases like Connor’s is CCI, whereby the skull no longer sits safely on the spine, placing pressure on the brain stem and spinal cord.

I am conscious that I can get quite technical when I discuss Connor’s case, so I will put it in his words. He says that his head is quite literally falling off his body. Chillingly, that is not something that is picked up on a scan but not felt; rather, Connor feels his head shifting around dangerously every day, with all the pain that goes with that. He is also acutely aware that his symptoms continue to worsen.

It is the intersection between EDS and CCI that I will focus on today, and I know that many other hon. Members will make important contributions about the broader challenges faced by people living with EDS.

[Alistair Strathern (Hitchin) (Lab)]

I congratulate my hon. Friend on securing this debate on a topic that, like him, I must confess I had not heard much about until I spoke to two of my constituents about it. Having heard from Sarah and Mark, who both suffer from craniocervical instability, I know that it is impossible for those suffering from it not to be left devastated by its impact. It not only limits and narrows their lives and what they can do, but crushes their family finances, as they are forced to seek expensive private treatment due to inadequate access to treatment via the NHS. Does my hon. Friend agree that it is really important to put that right and that we should start to consider what a better clinical pathway for this condition might look like, so that everyone suffering from it can access the treatment they deserve in their community?

[Josh Newbury]

I completely agree with my hon. Friend. In this country, we are incredibly proud of our NHS and the care that it can give people who have very common or very rare conditions. However, as I will set out further, and as he has just said, so many people with these two conditions feel very unseen, and we absolutely need to correct that. People should not have to fundraise to seek private treatment to be seen by doctors.

I will ensure in my speech that the experiences of patients who develop these two conditions and serious neurological complications are heard. When I speak to Connor now, the reality of what he is living with is incredibly difficult to hear. He has told me how much he is struggling, not just with the physical symptoms of his conditions but with his battle to be recognised in our health system. He feels that his conditions are not seen, not properly assessed and too often misunderstood. Like many other people, he has been left feeling that he is not even believed.

Connor told me that at one point he was barely eating, in order to try to save enough money to see a specialist neurosurgeon abroad. He does not come from a privileged background, so he has had to set up a crowdfunding page in the hope of raising enough money to get the specialist surgery and treatment that he needs. However, like so many patients in a similar situation, he is falling short. Even if he is able to reach his target and go abroad, he will be left asking the very simple question: “What happens when I come home?” He has described feeling as though he has been “gaslit” by the system, with his symptoms attributed elsewhere and his concerns not taken seriously.