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Ehlers-Danlos Syndrome and Craniocervical Instability
26 March 2026
Lead MP
Josh Newbury
Cannock Chase
Lab
Responding Minister
Sharon Hodgson
Tags
Justice & CourtsNHSEmploymentBrexit
Word Count: 13378
Other Contributors: 16
At a Glance
Josh Newbury raised concerns about ehlers-danlos syndrome and craniocervical instability in Westminster Hall. A government minister responded.
Key Requests to Government:
The MP asks the government to recognise that suspected CCI in EDS requires a defined process for assessment within the health service. This includes taking practical steps to reduce avoidable harm, ensuring diagnostic assessment, providing specialist opinions where needed, and establishing funding mechanisms for clinical necessity.
How the Debate Unfolded
MPs spoke in turn to share their views and ask questions. Here's what each person said:
Lead Contributor
The MP is concerned about patients like Connor Edwards who suffer from Ehlers-Danlos syndrome (EDS) and craniocervical instability (CCI). The conditions are often undiagnosed, leaving patients feeling unseen and unsupported by the NHS. Patients face challenges such as misdiagnosis, lack of access to appropriate diagnostics, and absence of a clear pathway for treatment and aftercare.
Hitchin
Congratulates the hon. Friend for securing this debate and raises concerns about the impact of craniocervical instability on individuals' lives and finances due to inadequate NHS access to treatment, urging consideration of a better clinical pathway.
Andrew Snowden
Con
Fylde
He highlighted the challenges faced by individuals with Ehlers-Danlos Syndrome and Craniocervical Instability, including long delays in diagnosis and limited clinical awareness. He called for better recognition of these conditions and improved care pathways.
Cameron Thomas
Lib Dem
Tewkesbury
He thanked the hon. Member for Cannock Chase for securing the debate and highlighted a constituent suffering from malnutrition, regular hospital visits, and frequent misdiagnoses due to Ehlers-Danlos Syndrome (EDS). He called for a clear treatment pathway for people with EDS.
Danny Chambers
Lib Dem
Winchester
Mr Chambers highlighted the challenges faced by patients with Ehlers-Danlos Syndrome due to diagnostic delays and fragmented care. He praised EDS UK's efforts in training clinicians and campaigned for standardised guidance and improved NHS services. Mr Chambers also mentioned Dr Emma Reinhold's development of an EDS toolkit that should be promoted by the Government.
West Dunbartonshire
Congratulates the hon. Friend on the debate and notes that one third of those with EDS or hypermobility spectrum disorder in Scotland live with at least one long-term serious condition, repeating experiences of delayed diagnosis.
Jayne Kirkham
Lab Co-op
Truro and Falmouth
Ms Jayne Kirkham discussed the challenges faced by individuals with Ehlers-Danlos syndrome in Cornwall, highlighting issues such as limited access to specialised care, long wait times for appointments, high costs of private consultations, and difficulties with accurate diagnosis. She mentioned that some patients had to travel extensively for medical treatment or consider moving away from their rural area due to inadequate local services. She questioned whether the Department's further review of the issue would include the intention to create a pathway for Craniocervical Instability.
Jim Shannon
DUP
Strangford
Jim Shannon highlighted the challenges in diagnosing and treating Ehlers-Danlos syndrome (EDS) and craniocervical instability, noting that these conditions are often underdiagnosed. He mentioned that it takes five to ten years for patients to receive a diagnosis and that they often face extensive waiting lists for specialist care. Shannon also expressed concern about the impact of prolonged uncertainty on mental health and called for timely investigations and better data collection. Asked about research partnerships with universities and medical companies to pursue cures for Ehlers-Danlos Syndrome and craniocervical instability, highlighting Queen's University Belfast as an example of such a partner.
Hayes and Harlington
Expresses the need for a comprehensive strategy on Ehlers-Danlos Syndrome that addresses issues of diagnosis and treatment, hoping to see breakthroughs similar to those in cancer strategies.
Lee Anderson
Reform
Ashfield
Lee Anderson shared the story of Hannah, a 17-year-old constituent with Ehlers-Danlos syndrome, detailing her daily struggles and lack of support from health services. He emphasised the need for better wheelchair access, services, and understanding of the condition.
Liz Twist
Lab
Blaydon and Consett
She congratulated the hon. Member for Cannock Chase on securing the debate and discussed the profound impact of Ehlers-Danlos Syndromes (EDS), including chronic pain, fatigue, and severe health issues. She cited a 2024 study that found one in 250 people might have some form of hypermobility stress disorder and highlighted delays in diagnosis leading to quicker deterioration for patients.
Neil Hudson
Con
Epping Forest
He paid tribute to patients with Ehlers-Danlos syndrome and craniocervical instability, including his constituent Natasha Little, for their advocacy in calling for better recognition of the needs of people with these conditions.
Glasgow West
Congratulates the hon. Friend on the debate and highlights that Scottish patients can wait up to 20 years for diagnosis and face difficulties in finding care, often requiring private treatment south of the border.
Peter Prinsley
Lab
Bury St Edmunds and Stowmarket
Peter Prinsley discussed the various types of Ehlers-Danlos Syndrome, noting that it can be difficult to diagnose due to its rarity and diversity. He cited specific examples such as hypermobile EDS affecting one in 5,000 people and classical EDS affecting one in 20,000 people. Prinsley emphasized the need for education among clinicians and researchers.
Rachel Gilmour
Lib Dem
Tiverton and Minehead
Rachel Gilmour expressed concern about the lack of structures for timely, evidence-informed decisions regarding Ehlers-Danlos Syndrome (EDS). She highlighted that 92% of EDS patients are unable to work due to their condition. Gilmour urged for a defined diagnostic and care pathway within the NHS.
Tonia Antoniazzi
Lab
Gedling
The MP highlighted the exhaustion and exasperation faced by patients with these conditions, emphasizing that they are often dismissed or misdiagnosed. She underscored the need for better recognition of these rare diseases within the NHS.
Uma Kumaran
Lab
Stratford and Bow
Raises the issue of patients being dismissed and passed from pillar to post, adding to their distress, and emphasises the need for healthcare teams to be equipped with knowledge about rare diseases such as Ehlers-Danlos. Paying tribute to her constituent Rebekah, Uma Kumaran highlighted the challenges faced by those with Ehlers-Danlos syndromes, including under-recognition and inadequate care. She praised local initiatives in Stratford and Bow aimed at providing responsive and integrated care for complex conditions.
Government Response
Sharon Hodgson
Government Response
It is a pleasure to serve under your chairmanship, Ms Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for securing this very important debate and for his excellent opening speech in which he took great care to set the scene for us. My hon. Friend has been instrumental in bringing national attention to the challenges faced by people living with Ehlers-Danlos syndrome and craniocervical instability, including Connor Edwards who has suffered greatly from these conditions. The Minister acknowledges that patients face immense physical and emotional hardship due to fragmented care systems and long waits for answers. She commits to ensuring patient voices are heard and that concerns about pathways, referrals, and clinical education will be addressed by the Department working closely with NHS England and patient groups. The Government is strengthening clinically led pathways, focusing on non-surgical management, co-ordinated physiotherapy, pain management, and rehabilitation. NHS England continues to support more consistent assessment and management of complex joint and spine conditions through programmes like Getting It Right First Time and RightCare, which aim to reduce unwarranted variation in treatment. The Minister also highlights the importance of evidence-based care, patient safety, integrated multidisciplinary care models, and digital tools for better symptom management. She commits to engaging with patients' organisations, conducting further research on conditions with overlapping symptoms, and ensuring a compassionate and evidence-based approach that listens to patients, avoids dismissal, and supports shared decision-making.
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About Westminster Hall Debates
Westminster Hall debates are a chance for MPs to raise important issues affecting their constituents and get a response from a government minister. Unlike Prime Minister's Questions, these debates are more in-depth and collaborative. The MP who secured the debate speaks first, other MPs can contribute, and a minister responds with the government's position.