Scheduled Event -
26 Mar 2026, 1:30 p.m.
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Commons -
Westminster Hall debate - Westminster Hall
Outcomes for patients with Ehlers-Danlos syndrome and craniocervical instability
MP: Josh NewburySpeech in Commons Chamber - Thu 26 Mar 2026 Business of the House
"In recent weeks, I have heard from many fathers in my constituency concerned about the attitude they have encountered from the Child Maintenance Service and the Children and Family Court Advisory and Support Service, including assumptions that they are trying to shirk payments, absence of support when ex-partners cut off …..." Josh Newbury - View Speech
"I could not agree more with my hon. Friend. The exhaustion and exasperation that she refers to occurs, as we have heard from other hon. Members, time and time again. I agree that the work being done on rare diseases is incredibly important, and at the end of my speech …..." Josh Newbury - View Speech
"I could not agree more with my right hon. Friend. He mentioned a key word in this debate—“hope”, which is something that so many people with the conditions do not have at the moment. That is what we absolutely need to give them. I share his hope that there is …..." Josh Newbury - View Speech
"I am grateful for the opportunity to briefly wind up; the fact that it must be brief shows the incredibly rich, emotive and deep debate we have had. Obviously, I will not be able to go through everybody’s contributions, but I thank all hon. Members who contributed. They raised the …..." Josh Newbury - View Speech
"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 …..." Josh Newbury - View Speech
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 …..." Josh Newbury - View Speech
"One thing that we have come across consistently is that a huge amount of research has been done internationally and, as many hon. Members have outlined, constituents are funding themselves to go abroad for treatment and surgery. As part of that work with the NIHR, would the Minister be willing …..." Josh Newbury - View Speech
"I thank the Minister for her words, but I would add one point to her list, if I may, which is aftercare for people who have travelled abroad to have surgery. I understand that that is a tricky issue for the NHS, but we have heard consistently from several hon. …..." Josh Newbury - View Speech