People in the UK living with certain hypermobility conditions are waiting up to 21 years to receive a diagnosis, according to new research that exposes a significant gap in how the NHS identifies and manages these disorders. During that time, patients report living with chronic pain, partial joint dislocations, fatigue and a range of neurological and gastrointestinal symptoms, often without explanation or appropriate treatment.

The conditions at the centre of the research are hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). Both affect connective tissue throughout the body and can produce a broad and varied set of symptoms, which is partly why they are difficult to identify. Joint instability is a common feature, but patients frequently also report anxiety, depression, migraines and digestive problems. Because no single symptom points clearly to either condition, patients are often assessed in isolation for each complaint rather than collectively.

The study, led by researchers at the University of Edinburgh's Institute of Genetics and Cancer, surveyed more than 2,000 people between September 2023 and January 2024. It is described as the largest study of its kind conducted in the UK. Participants were asked about their diagnostic journey, their symptoms and the broader effects of their condition on daily life.

The regional disparities in waiting times are considerable. Respondents from Wales reported the longest average gap between symptom onset and diagnosis, at 21.7 years. Northern Ireland followed at 21.1 years, Scotland at 19.5 years and England at 19 years. Access to diagnosis also varied by location in a more practical sense: more than a third of respondents from Wales and Northern Ireland said they had travelled to another part of the UK to receive a diagnosis. In Scotland, 17 per cent had done the same. Those living in England were the most likely to be diagnosed within their own country, at 98 per cent.

The wider consequences of delayed diagnosis are reflected throughout the data. Nearly half of all respondents were unemployed at the time of the survey, and 48 per cent were in receipt of disability-related benefits. More than half reported that their education had been disrupted. Of the physical symptoms, 84 per cent reported chronic pain, 74 per cent had experienced partially dislocated joints and 66 per cent reported gastrointestinal symptoms. Anxiety was reported by 71 per cent, depression by 63 per cent and migraines by 53 per cent.

Kathryn Berg, trial and data manager at the university, said the findings demonstrated the scale of impact these conditions can have across a person's entire life. She said there was an urgent need for care pathways that are equitable and multidisciplinary, and that reflect the complex and multisystemic nature of hEDS and HSD rather than treating each symptom in isolation.

Both the Welsh Government and the UK Government have responded to the research. A Welsh Government spokesperson acknowledged that patients in Wales face long and complicated journeys to diagnosis and said that a draft community health pathway is being developed, currently awaiting clinical endorsement. The UK Government said that a toolkit developed by the Royal College of General Practitioners in partnership with the charity EDS Support UK has been made available to clinicians to support recognition and consistent management of both conditions.

The toolkit is advisory, and the proposed Welsh pathway has yet to be formally adopted. What the research makes clear is that the existing system, which typically requires a GP referral to a specialist before any formal assessment can begin, is not working for a large number of patients. Without structural changes to how these conditions are taught, recognised and referred to, the gap between symptom onset and diagnosis is unlikely to close in any meaningful way.