Enough is Enough

Campaigning for better diagnosis, care and support for people with EDS and HSD across the UK

98% of members who responded to our 2026 survey said campaigning for improved NHS care and treatment was important, very important or essential.

That is the mandate behind Enough is Enough, Making It Matter and Making May Matter: three connected campaigns turning lived experience into pressure for change.

Too many people living with Ehlers-Danlos syndromes and hypermobility spectrum disorders are still waiting too long for diagnosis, struggling to access informed care, or paying privately for support they should be able to receive through the NHS.

This campaign is about changing that.

Why change is needed

People with EDS and HSD face long waits, unclear referral routes and limited access to healthcare professionals who understand their condition.

Symptoms are often dismissed, misdiagnosed or treated as separate problems. Some people pay privately because they cannot access the care they need through the NHS.

The impact reaches far beyond healthcare. EDS and HSD can affect education, family life, mental health, finances and work.

Our 2026 members survey found that:

79% had paid privately for healthcare, treatment or symptom management
93% said EDS or HSD symptoms had affected their ability to work
43% had never been able to work or had to give up work because of their condition
85% said their household was under financial strain because of their condition

People should not have to rely on luck, geography or personal finances to be believed, diagnosed or supported.

“Awareness of multidisciplinary care must be improved!!! Thank you for campaigning for it!!”

What we are calling for

EDS UK is calling for:

clear NHS pathways for diagnosis and care
better training for healthcare professionals
joined-up support for complex and overlapping symptoms
fair access to services across all four nations
lived experience to shape service design

This is not about asking every healthcare professional to become an EDS specialist. It is about making sure people are listened to, recognised, recorded, supported and referred appropriately.

From Enough is Enough to Making It Matter

Enough is Enough began with four UK petitions in 2023.

More than 33,000 people signed petitions calling for better NHS care for EDS and HSD. EDS UK also handed in a petition to Downing Street with over 28,700 signatures.

The campaign then evolved.

In March 2026, Making It Matter focused our community’s voice around the Westminster Hall debate on EDS and craniocervical instability. Supporters sent 3,606 emails to MPs, reaching 629 of 650 MPs. This helped secure one of the most significant parliamentary discussions on EDS and CCI to date.

In May 2026, Making May Matter built on that momentum in Scotland and Wales, engaging newly elected MSPs and Members of the Senedd.

Together:

Scottish supporters sent 1,316 emails, reaching 119 of 129 MSPs
Welsh supporters sent 414 emails, reaching every Member of the Senedd
supporters sent more than 5,300 direct messages to elected representatives across Westminster, Scotland and Wales in just a few months

Enough is Enough started as a demand to be heard. Making It Matter and Making May Matter helped turn that demand into direct political engagement across the UK.

“I just wanted to say a huge thank you for your support and continued campaigning. You do incredible work with a small team and it’s so appreciated!”

Progress across the UK

In England, we continue to speak with the Department of Health and Social Care about improving recognition and support.

In Scotland, meetings with MSPs are being arranged following the Make May Matter campaign.

In Wales, EDS UK has helped develop an NHS Wales primary care pathway for EDS and HSD. We are pushing for its publication and implementation.

In Northern Ireland, EDS UK has secured Department of Health funding to support healthcare professional education and improved pathways of care.

This work is also supported by professional education, research, policy briefings, partnership work and the continued evidence gathered from our members.

“I particularly appreciate the work you do campaigning for better awareness, research and treatment within the NHS…”

What happens next

We will keep pushing for earlier diagnosis, clearer pathways, better professional education and fairer access to care.

As EDS UK approaches its 40th anniversary in 2027, this campaign builds on decades of advocacy by members, volunteers, supporters and staff.

Every signature, email, survey response, donation and shared story helps move this work forward.

Help us keep going

Sign up for EDS UK updates, share campaign actions, become a member, donate, or share trusted EDS UK resources with healthcare professionals and decision-makers.

Together, we can keep pushing for better diagnosis, care and support for everyone affected by EDS and HSD in the UK.

Campaign