Make it Matter: Westminster Debate on EDS, HSD and CCI

• 
• 18 March, 2026

On Thursday 26 March, MPs led by Josh Newbury MP, will gather in Westminster Hall to debate outcomes for people with Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD) and craniocervical instability (CCI). This is a crucial opportunity to ensure that the voices of our community are heard in Parliament — and we need your help to make it matter.

👉 Take action now: https://edsuk.eaction.org.uk/makeitmatter

Why this debate matters

Across the UK, people with hypermobile EDS (hEDS) and HSD are being let down by the healthcare system.

• Diagnosis can take 10–23 years

• Many people are left without support or a clear pathway to care

• Healthcare professionals often lack the training, time and tools to diagnose and manage these conditions properly

Despite hEDS and HSD being relatively common — affecting an estimated 1–4% of the population — it remains under-recognised and underdiagnosed. For many, this leads to years of worsening health, loss of work or education, and a profound impact on quality of life.

The reality for our community

People with hEDS and HSD often experience complex, multi-system symptoms, including:

• Chronic pain and fatigue

• Joint instability and musculoskeletal problems

• Autonomic dysfunction (such as PoTS)

• Gastrointestinal and immune issues

• In rare cases, serious complications such as CCI

These conditions frequently overlap with others like ME/CFS, Long Covid and Mast Cell Activation, making coordinated care essential.

Yet too often, people are:

• Dismissed or not believed

• Passed between services without answers

• Left to manage alone without specialist support

What needs to change

EDS UK is calling for urgent, practical changes to improve care:

• Integration of EDS and HSD into NHS service specifications and long-term condition strategies

• Joined-up, multidisciplinary care across primary and secondary services

• Training and support for healthcare professionals

• A national multidisciplinary team (MDT) for rare complex cases like CCI

These changes would not only improve lives, they would also reduce long-term costs to the NHS by enabling earlier diagnosis and better management and helping people stay in work.

Why your voice matters

This debate has been secured by backbench MPs and they will be listening to their constituents.

MPs from all parts of the UK can attend and speak, even though healthcare is devolved. They can raise:

• The experiences of people in their constituencies

• UK-wide issues like guidance and training

• The need for coordinated care across all four nations

The more MPs who hear from constituents, the stronger this debate will be.

Take action today

We’ve made it quick and easy to contact your MP.

👉 Email your MP now: https://edsuk.eaction.org.uk/makeitmatter

By taking part, you can:

• Share your experience (if you wish)

• Ask your MP to attend the debate

• Call for the changes our community urgently needs

Together, we can make it matter

We have already made progress from petitions and parliamentary events, to helping shape a new draft primary care pathway in Wales.

Now we have another chance to push for change at a UK level.

This is about being heard, being believed, and getting the care people with EDS and HSD deserve.

Please take a moment to act today and help us make this debate matter.