Patients in Wales face decade-long waits for rheumatology diagnosis, new study finds

Nation.Cymru staff

Patients in Wales are facing long delays, limited access to specialists and barriers to diagnosis for rheumatological conditions, according to new research from Swansea University.

The study, which draws on patient interviews, survey data and Freedom of Information requests to Welsh health boards, highlights a series of structural challenges affecting people with conditions such as lupus and other autoimmune diseases.

Researchers found a shortage of specialist doctors across Wales, with some patients reporting no access to lupus specialists in their area. FOI responses also indicated there is only one NHS neuro-ophthalmologist in Wales, restricting access for patients experiencing neurological or visual symptoms linked to autoimmune conditions.

The report also identified gaps in diagnostic services. No Welsh health board said it currently provides nailfold capillaroscopy, a test used to help diagnose conditions such as scleroderma.

Difficulties accessing care were compounded by delays and inconsistencies in referral processes. Under NHS Wales rules, clinicians must apply to their local health board for approval to refer patients outside their area or to England. The study found decision-making around these applications was often “chaotic and inequitable”.

One patient with systemic lupus erythematosus reported waiting two years for a referral to England that he said should have taken a matter of weeks.

Overall, patients in Wales reported significantly longer diagnostic journeys than elsewhere in the UK. In a small sample analysed by researchers, the average time from first symptoms to diagnosis was around 11 years, compared with around seven years across the UK.

Patients interviewed described the impact of these delays on their health. One woman in her 30s said repeated requests to see a specialist in a neighbouring health board had been refused, adding: “My lupus has got worse.”

Another patient, who had previously lived in England, said access to care had become more difficult after moving to Wales, with longer gaps between appointments.

The research was led by Swansea University Medical School researcher Rupert Harwood, who has several autoimmune conditions himself.

His own experience reflects the issues identified in the study.

After developing visual symptoms in 2016, Harwood was advised to see a neuro-ophthalmologist — a service not then available in Wales.

A referral to England was not successfully made until 2025, and he is still waiting for an appointment.

“Ten years after my symptoms began, I am still waiting to be seen,” he said.

Disadvantaged

Harwood said the current referral system can disadvantage patients who cannot afford to seek private care outside Wales, despite claims that it ensures equal access.

The study concludes that, while NHS Wales rheumatologists provide high-quality care, patients face additional barriers compared with those in England.

Researchers have called for a review of the NHS Wales out-of-area referral policy, improved access to specialist services, and investment in diagnostic testing to reduce delays and improve outcomes for patients.