#enoughisenough campaign update!

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• 18 August, 2026


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• EDS UK news

EDS UK’s Enough is Enough campaign update

Following the tremendous news on Wednesday 10 th Sept 2025 from the House of Commons where Josh Newbury MP told a packed House of Commons the story of his constituent Connor who is living with Ehlers-Danlos syndrome (EDS) and Craniocervical Instability (CCI), we welcomed the response from the Prime Minister who said “I will make sure he gets the meetings that he needs so we can hear from Connor and others and learn from their experience.”

Back in 2023 over 33,000 of you signed our petitions calling for NHS care for EDS and HSD. So many wrote to their MPs. At the end of 2023 we held an MP briefing in Westminster which was standing room only given the huge response we had from you asking your MPs to come and learn more about EDS and HSD. It led to a debate in May 2024 where EDS UK took our voices to the heart of Westminster and a groundbreaking debate went on record and the Minister promised us a meeting to discuss what could be done.

The general election was called straight after the debate and so that meeting didn’t happen. We now have a new government and new MPs to raise awareness of EDS and HSD with. In April this year Josh Newbury MP and his team got in touch asking for more information on EDS. We helped update them on everything they needed to know including the Enough is Enough campaign journey to date and the promise of a meeting with the Minister that remained unfulfilled. Our Chief Executive Susan Booth met in person with Josh and his team in July and discussed his application for a debate and what needed to change within the NHS to support people living with EDS and HSD. In September Josh secured the opportunity to schedule a Prime Ministers Question which led to another promise of a meeting.

Lots of the EDS and HSD community have got in touch with us asking how they can get involved and help. Thank you so much for this, together we will make a huge difference. There are four ways in which we can make the most of this opportunity together.

• Make a donation to help keep the momentum of the Enough is Enough campaign going.
• Write to your MPs, even if they are the same ones as last time. See helpful text to copy and paste below.
• Become a member of EDS UK to hear the latest news and have your voice heard. Join here
• Repost EDS UK social media posts to reach as many people as possible @ehlersdanlosuk (X, Insta, Facebook, Tik Tok, Linkedin)

You can find your MP here https://members.parliament.uk/FindYourMP
You can use the text below for your email to them – please tailor with your own story and situation

Dear xxx MP
I am writing to you as a constituent to ask for your help. I want the government to honour the meeting promised at Prime Ministers Questions on the 10 th Sept 2025 and at the Westminster Hall debate on the 22 nd May 2024 to discuss the following asks:

• A pathway for NHS diagnosis and care for hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders in England. 
• NICE guidelines for Ehlers-Danlos syndromes and hypermobility spectrum disorders. 
• A coordinated, multidisciplinary approach to diagnosis and care, integrated across primary and secondary care, for people with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders and their associated co-morbidities in England.  
• Support and training for healthcare professionals to deliver this.

I am also asking you to support Josh Newbury MP’s application for a backbench business debate on my behalf.
 
[Space here to add information about your own experiences].

In 2023 the largest UK charity for EDS, The Ehlers-Danlos Support UK handed in a petition to Downing Street of over 28,700 signatures. The motion on ‘Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders: debated on Wednesday 22 May 2024 at the British Parliament’ is to date the most important policy discussion about EDS in any public institution in the country. 
EDS is a connective tissue disorder with body-wide symptoms which can be disabling, affecting all aspects of life. Symptoms include musculoskeletal problems, chronic pain and fatigue, gastrointestinal disturbance, pelvic and bladder problems, autonomic dysfunction and anxiety. There is no single test for the most common type hypermobile EDS (hEDS), which makes diagnosis challenging. Hypermobility spectrum disorders (HSD)
present many of the same symptoms and share the same diagnostic challenge.

Together, hEDS and HSD are fairly common (possibly affecting 1 in 500 people).
 
Thank you so much for your time and help.
Yours sincerly