Josh Newbury

It is a privilege to speak in this summer Adjournment debate—named, of course, in honour of Sir David Amess. Sir David understood the quiet power of Back-Bench MPs in this House shining a light on issues that are all too often left in the shadows. In that same spirit, I rise to speak about Ehlers-Danlos syndrome—a group of rare inherited disorders that affect the body’s connective tissue. Though EDS is officially recognised as affecting around one in 5,000 people globally, the figure is widely believed to be much higher due to misdiagnosis and under-recognition. In the UK it is thought that around 460 people in every constituency are living with EDS, yet it remains one of the most misdiagnosed and neglected conditions in our healthcare system. One of those 460 people in my constituency is Connor Edwards. I had the chance to meet Connor earlier this year, and his story has stayed with me ever since. A few years ago while mountain biking on Cannock Chase, he was bitten by a tick and developed Lyme disease, but Lyme was only part of the story. It turned out that Connor also had EDS—a condition that affects the collagen responsible for supporting skin, joints, blood vessels and internal organs. For people like Connor, that can mean chronic dislocations, unbearable pain, neurological dysfunction and craniocervical instability, where the skull becomes unstable and begins to shift on the spine. As a result, Connor’s head no longer sits safely on his spine, and the instability is crushing vital areas like the brain stem and spinal cord. He lives with pain, frequent seizures and a level of disability that has robbed him of the life he once loved—fishing, mountain biking and simply going outside. He told me that he feels that his quality of life has been completely shattered. For a man, like me, in his early 30s to be in this position is heartbreaking. It should not be anybody’s reality in a country as wealthy as ours. The NHS currently offers no treatment for CCI, and it lacks both expertise and imaging capabilities—for example, the upright MRIs needed to diagnose this condition are not available on the NHS. Connor is now crowdfunding £50,000 to travel to a specialist clinic in Barcelona in the hope of receiving lifesaving surgery that will fuse his skull to his spine. Connor is not alone. According to Ehlers-Danlos Support UK, it takes patients up to 12 years to receive a diagnosis. Access to specialists is patchy at best, and those with the means often turn to private care. Those without the means suffer, deteriorate and navigate a system that does not see them. Let us be clear: EDS is not rare. It is rarely diagnosed. What begins as a physical health condition can quickly become a mental health crisis. A debate was held on EDS back in May last year, but the Members who spoke so powerfully that day never had the opportunity to meet with the then Minister. That cannot be where this conversation ends. I will be applying to the Backbench Business Committee for a debate on EDS, and I urge colleagues across the House to join me in this effort. Let us make space for the Connors in every constituency. This is not just about one young man in Cannock. It is about everyone who is waiting not only for treatment but for someone to believe them. Madam Deputy Speaker, may I wish you, all hon. Members, and especially all parliamentary staff, a restful summer break?