Government responses show why EDS and HSD pathways are urgently needed

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• 15 June, 2026

New findings from the hEDS-START project, led by Kathryn Berg and Dervil Dockrell at the University of Edinburgh, have confirmed what people living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) have told us for many years: diagnosis takes too long, care is too fragmented, and too many people are left to find answers on their own.

The study found that people with hypermobile EDS (hEDS) and HSD wait around two decades for a diagnosis across the UK. This reflects what EDS UK members told us in our 2026 survey: long waits, missed or incorrect diagnoses, unclear referral routes, limited knowledge among healthcare professionals, financial barriers and not being believed. Also in our survey, 85% of members said their household was under financial strain because of their condition. 43% said they had either never been able to work or had to give up work. On average, 79% had paid privately for some form of care, treatment or symptom management.

“It is disappointing that – in the face of compounding evidence showing the difficulties faced by people living with hEDS/HSD in their journeys to diagnosis – we are still seeing their experiences being dismissed, with government spokespersons making reference to guidelines that don’t exist, and to action plans that aren’t relevant to the vast majority of these patients. While we are pleased that the UK Government has recognised the value of the EDS UK GP Toolkit, we firmly believe that more work needs to be done to securing an appropriate pathway of care for all patients with hEDS/HSD in the United Kingdom.” – Kathryn Berg and Dervil Dockrell, the hEDS-START team.

For several years, EDS UK members and supporters have campaigned across all four UK nations. The government responses to this research show that campaigning is making the issue harder to ignore. But recognition is only the first step.

What governments said and why more action is needed

The media coverage of the hEDS-START research included responses from government spokespersons across the UK. These responses show that the problem is being recognised, but they also show why campaigning must continue. We have detailed them below with EDS UK’s thoughts.

• In England, the UK Government said people living with hEDS and HSD deserve to have their symptoms recognised and taken seriously. It pointed to the EDS UK GP Toolkit as a resource available to clinicians.
  • We say, the EDS UK GP Toolkit is an important resource. But a toolkit is not the same as a commissioned pathway. People still need clear routes to diagnosis, management and joined-up care, especially where symptoms affect several body systems.
• In Wales, the Welsh Government said people with HSD and EDS can face “long and complicated journeys to diagnosis”. It also said a draft community health pathway has been developed with clinical experts and EDS UK to help people receive more consistent care closer to home. But the pathway still needs formal agreement and clinical endorsement before it can be put into place.
  • We say, this is welcome progress. While we welcome the commitment to resolving outstanding issues, people with EDS and HSD in Wales urgently need clarity on what remains unresolved, who is responsible for progressing the pathway, and when publication can realistically be expected.
    People in Wales need the pathway published and implemented, so that GPs and patients have something practical to use.
• In Scotland, the Scottish Government said it recognises the importance of timely diagnosis and is taking forward work through Scotland’s rare disease action plan, including education and increased awareness among healthcare professionals.
  • We say, awareness is essential. But although most types of EDS are rare; hypermobile EDS and HSD are not thought to be rare in the same way. If hEDS and HSD are treated only through a rare disease lens, many people may still fall outside the support they need. Waiting to see what happens in another nation also creates more unnecessary delays. EDS UK has templates, evidence and knowledge from our work across the UK, and we can help local teams adapt pathways to their own healthcare systems.
• In Northern Ireland, the Department of Health said EDS and HSD can be complex and challenging to diagnose and treat. It described a route through GP and specialist referral and said services conform to established NICE guidance.
  • We say, but there is no NICE guideline specifically for EDS and HSD. That is part of the problem. Without condition-specific guidance or a clear pathway, patients and healthcare professionals are left navigating complex conditions without the structure they need. The Department also said it is monitoring the pathway work in Wales and will consider emerging evidence or best practice. Again, waiting to see what happens elsewhere risks adding further delays for people who are already waiting far too long.

Why we will keep campaigning

Across all four nations, the responses point to the same issue: people living with EDS and HSD need more than recognition. They need clear pathways, informed healthcare professionals and coordinated care. Our members have been clear about what needs to change. Raising awareness with healthcare professionals is now their top priority, followed by research, campaigning and reliable information.

Susan Booth, Chief Executive of EDS UK, said:

“Nobody should have to pay privately, travel long distances, repeat their story to multiple departments or wait decades to be believed. These government responses show that the problem is recognised, but recognition must now lead to action. We need clear pathways, informed healthcare professionals and joined-up care so that people with EDS and HSD can access the appropriate medical services and support they need.”

Thank you to Kathryn and Dervil for your research and your determination to create systemic change and to everyone who has emailed their representative, shared their experience or supported our campaigns. Your voice helps make invisible experiences visible and helps us keep pushing for change.

Read more

University of Edinburgh: Study reveals two-decade delay in hypermobility diagnoses
https://www.ed.ac.uk/news/study-reveals-two-decade-delay-in-hypermobility-diagnoses

The Guardian: UK hypermobility sufferers wait decades for diagnosis, study finds
https://www.theguardian.com/society/2026/jun/15/uk-hypermobility-sufferers-wait-diagnosis-study-ehlers-danlos

Nation.Cymru: Welsh patients wait more than two decades for hypermobility diagnosis, study finds
https://nation.cymru/news/welsh-patients-wait-more-than-two-decades-for-hypermobility-diagnosis-study-finds/

The Irish News: Research reveals average wait of over 21 years in NI for hypermobility diagnosis
https://www.irishnews.com/news/northern-ireland/research-reveals-average-wait-of-over-21-years-in-ni-for-hypermobility-diagnosis-I42HU3KHFFBCJOMGOXXHTWN7DA/

Edinburgh Live: Edinburgh study finds patients waiting decades for diagnosis
https://www.edinburghlive.co.uk/news/edinburgh-news/edinburgh-study-finds-patients-waiting-34120688

Daily Record: “It’s time to end the postcode lottery”
https://www.dailyrecord.co.uk/news/scottish-news/its-time-end-postcode-lottery-37294754