Ehlers-Danlos Syndrome and Craniocervical Instability

Rachel Gilmour Excerpts

Thursday 26th March 2026 Westminster Hall

[Rachel Gilmour (Tiverton and Minehead) (LD)]

It is a pleasure to serve under your chairmanship, Ms Furniss. I thank the hon. Member for Cannock Chase (Josh Newbury), who I would also be proud to call my hon. Friend, for bringing this debate to Westminster Hall. I do not think there is a single elected person sitting in this Chamber who does not realise what a wonderful privilege it is to represent all our constituents. But a day like today, when we have an opportunity to change the lives of people who suffer from EDS, is a particularly privileged day. I hold that thought at the front of my mind, and thank all Members for coming.

A few weeks ago I met one of the most brave, beautiful young women I have met in a long time. Her name is Stevie, and she lives in Willand, which is in the Devon part of my constituency. She came to see me, but she was quite worried about it because she had never been to see an MP before—there was a degree of trepidation. But she was so eloquent, passionate and determined to tell me about the impact that this dreadful disease had had on her life, I had no option but to come here today to repeat her words.

Like many of the constituents who have been mentioned, Stevie had to raise her own funds to get diagnosed and have the treatment. She was housebound and bedbound, and had to give up work. She has a wonderfully supportive husband who goes out to work six days a week to support her and their two young children, who happen to be autistic. What a beacon of honour and bravery—I just cannot imagine how she lives on a day-to-day basis.

Those with EDS have been left to suffer without the structures needed to make timely, evidence-informed decisions. Patients are not asking for predetermined outcomes or routine surgery; they are asking for recognition that suspected craniocervical instability in Ehlers-Danlos syndrome requires a defined process for assessment and management within the NHS.

Of Ehlers-Danlos Support UK members, 92% are not able to work because they are so affected by the condition. Almost half of those people were working, but had to give up entirely because of the syndrome’s debilitating impact. This is not just about people’s lives and their mental health; it is actually about supporting our country and enabling people with this syndrome who do want to work to make a contribution.

Rather than leaving patients to deteriorate to the point of having to consider neurosurgical options, there should be an early diagnosis. As many colleagues have said, establishing a specified EDS care pathway makes the case for itself. Earlier intervention would improve quality of life and strengthen the economic health of the country by enabling people with EDS to remain in work—like the member of staff of the hon. Member for Blaydon and Consett (Liz Twist).

It is true that the Department of Health and Social Care’s recognition of the complexity of EDS and the low awareness surrounding it is a step in the right direction. But I believe the central ask of this Government and the Minister is to heed the collective call from across the parties for a defined diagnostic and care pathway.