"Everyone's a bit bendy. It's not connected to your other symptoms.", what you've probably been told
EDS / HSD
No dedicated NICE guideline exists for hEDS or HSD. Your letter is grounded in NICE NG193 (chronic pain in over 16s), which genuinely covers most HSD/EDS sequelae, plus the NHS Constitution for England and GMC Good Medical Practice. The 2017 international hEDS classification (Beighton score plus systemic criteria) maintained by The Ehlers-Danlos Society is the diagnostic reference a specialist would use, and the letter names it as the framework it asks your GP to consider, without pretending it is a NICE guideline.
The wait: A UK survey of more than 2,000 people with hEDS or HSD found an average diagnostic delay of 19 to 21.7 years. Source: University of Edinburgh, national UK survey of more than 2,000 people with hEDS or HSD, co-developed with Ehlers-Danlos Support UK, published in Disability and Rehabilitation, 15 June 2026
What GPs miss
Hypermobility is frequently dismissed as benign. The associated comorbidities. POTS, MCAS, GI dysmotility, chronic pain, are routinely missed because the GP doesn't connect them.
The letter asks for
- A Beighton score assessment
- Consideration of hEDS / HSD per the 2017 international criteria
- Referral to rheumatology or a hypermobility service where available
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Frequently asked questions
Is hEDS rare?
No. Hypermobile EDS and HSD together are relatively common. The 2017 international hEDS criteria are the standard diagnostic reference a specialist would use, and any GP can follow the initial Beighton score assessment before referring on.
What you hear vs. what the guidance says
What's usually said in the room
"Everyone's a bit bendy. It's not connected to your other symptoms."
What the guideline actually says
Hypermobility is frequently dismissed as benign. The associated comorbidities. POTS, MCAS, GI dysmotility, chronic pain, are routinely missed because the GP doesn't connect them.
Source: NICE NG193: Chronic pain (primary and secondary) in over 16s, closest applicable NICE guideline
What to do next
You have just read what the guidance says. The gap most people hit next is getting that in writing, on their record, in front of their GP.
Your GP has not acted on it
We draft a formal letter to your NHS GP citing the applicable NHS guidance, built from a 3 minute assessment in your own words. £39. Free redraft if anything reads wrong.
You are claiming PIP for this too
PIP award rates, trend and mandatory reconsideration for EDS / hypermobility, computed from the DWP's Stat-Xplore database.
The same page covers what to do if you have already been refused.
You send the letter, not us. General information, not medical advice.
Where EDS / HSD sits in the DWP's PIP award-rate league table
Benefits and rights for EDS / HSD
Outcomes from people with EDS / HSD
One short email each Sunday, anonymised stories from people who put their case to their GP in writing.