New research from Swansea University has identified significant delays and diagnostic barriers affecting rheumatology patients in Wales.
Drawing on patient interviews, survey data and Freedom of Information (FOI) requests to Welsh health boards, the research highlights:
- A shortage of specialist doctors
Interviewed lupus patients reported having no access to lupus specialists in their areas, while FOI responses indicated that Wales has only one NHS neuro-ophthalmologist, further restricting access to assessment for visual or neurological symptoms.
- A shortage of critical diagnostic tests
No Welsh health board reported providing nailfold capillaroscopy — a key diagnostic tool for autoimmune conditions such as scleroderma.
- Long waits or refusal of out-of-area referrals
Under the NHS Wales Prior Approval (Out of Area) Policy , clinicians must apply to their health board for permission to refer patients elsewhere. The study found that decision-making on these applications was "chaotic and inequitable". One systemic lupus erythematosus patient in his 50s reported a two-year wait for a referral from Wales to England, which he said "should have taken a month".
- Long diagnostic delays
A lack of Wales-based specialists and difficulty securing referrals to other health boards or to England contribute to long diagnostic delays. In a small sample, surveyed patients in Wales reported an average delay of around 11 years from first symptoms to diagnosis of lupus or other systemic rheumatic diseases, compared with around 7 years across the UK.
The research concludes that, despite the excellent expertise of NHS Wales rheumatologists, patients in Wales face particular challenges compared with those in England.
A lupus patient in her 30s said: "There are no lupus specialists in my area, but my requests for a referral to a specialist in the neighbouring health board keep getting rejected. My lupus has got worse."
A Sjögren's disease patient in her fifties who moved from England to Wales reported: "…unfortunately, I have struggled at times to get regular appointments — six months in England, twelve months in Wales. I do truly believe that if I had not come to Wales with a full diagnosis, it would have been much harder to get one."
Study researcher Rupert Harwood — who has several systemic autoimmune diseases — from Swansea University Medical School , said: "Despite the claim in the NHS Wales Prior Approval (Out of Area) Policy that it 'ensures equity in terms of access', it appears to disadvantage those on low incomes who cannot afford a private appointment in England."
Harwood's experience – reported in the Journal of Patient Experience – reflects several of the study's findings.
After developing visual symptoms (including light flashes, after-images and visual snow) in 2016, ophthalmology recommended that Harwood see a neuro‑ophthalmologist — a service not then available in Wales.
Harwood said: "A successful NHS Wales referral to neuro-ophthalmology in England was not made until 2025, and it was only two weeks ago that I finally received an appointment. Ten years after my symptoms began, I am still waiting to be seen."
Harwood's symptoms have continued to progress during the decade-long wait, including an accident in which he was knocked unconscious after being unable to see a closed door.
Harwood said: "Like many of the patients I interviewed for the study, I fully support the principle of the NHS but felt terribly let down that it was not there for me when I really needed it."
He added: "I think NHS Wales needs more specialists, faster referrals, less chaos and more compassion."
The study recommends several actions to address these issues, including:
- A full review of the NHS Wales Prior Approval (Out of Area) Policy, involving patient groups, medical charities and professional bodies in developing a more effective and equitable system.
- An audit of specialist provision across Wales.
- A funded plan to address gaps in rheumatology, neuro‑ophthalmology and diagnostic testing.
- Ensuring that more specialist rheumatologists — and improved access to neuro-ophthalmologists — are available across Welsh health boards.
- Making nailfold capillaroscopy available throughout Wales.
