Study led by Swansea University says long delays, limited specialist access and referral barriers are leaving some patients worse off than those elsewhere in the UK

PEOPLE in Wales with autoimmune and rheumatological conditions are facing long waits for diagnosis, poor access to specialist care and repeated obstacles when trying to secure treatment outside their local area, according to new research.

The study, led by Swansea University, examined the experiences of patients with illnesses including lupus and other autoimmune disorders. It drew on interviews, survey findings and Freedom of Information responses from health boards across Wales.

Researchers found that specialist provision remains limited in some parts of the country. Some patients reported having no access to a lupus specialist in their area, while FOI responses indicated there is only one NHS neuro-ophthalmologist in Wales for patients with neurological or visual problems linked to autoimmune disease.

The report also highlighted a lack of diagnostic services. None of the Welsh health boards that responded said they currently provide nailfold capillaroscopy, a test used to help identify conditions such as scleroderma.

Diagnosis in rheumatology can also be difficult because many of the conditions involved are complex and may develop gradually over time. Illnesses such as ankylosing spondylitis can be mistaken in the early stages for more common causes of pain, while autoimmune disorders often present with symptoms that overlap with other conditions.

Patients may require a combination of investigations before a diagnosis can be confirmed, including HLA-B27 testing, routine blood work, MRI scans, X-rays and detailed clinical assessment. Doctors also rely heavily on patient interviews to build up a picture of pain, stiffness, mobility and the wider pattern of symptoms.

There have also been local pressures on services in west Wales. At Withybush Hospital, delays were caused after the departure of a specialist consultant, and it took some time for that post to be filled. That consultant has now been replaced. However, it is understood the workload remained heavy, with the specialist working through a backlog of cases.

In some cases, patients may also feel rheumatology is treated as a lower-profile service. At Withybush Hospital, for example, the department has been based in a portacabin in the hospital car park, which it shares with the lymphoedema service — a setting that can give the impression that two important but often overlooked specialties are being accommodated on the margins of the wider hospital system.

Rheumatology also places a significant burden on the NHS because of the cost of long-term treatment and follow-up care, although that is not the main focus of the study. Biological drugs used to treat conditions such as rheumatoid arthritis and ankylosing spondylitis can cost around £500 for a pack of four injections, according to local hospital sources. Patients on those medications often also require regular blood monitoring, consultant reviews, specialist nurse support and physiotherapy. The Herald understands that more than 1,000 patients in Pembrokeshire are currently being managed through this treatment pathway.

Researchers said patients were also being held back by the referral system. Under current NHS Wales rules, doctors must apply to their local health board for permission to send patients for treatment outside the area or across the border into England. The study said decision-making around those requests was often inconsistent and unfair.

One patient with systemic lupus erythematosus told researchers he waited two years for approval to be referred to England, despite believing the process should only have taken weeks.

The study found that patients in Wales often face longer journeys to diagnosis than elsewhere in the UK. In the sample reviewed by researchers, the average time from first symptoms to diagnosis was around 11 years, compared with around seven years across the UK.

Patients described the effect those delays had on their health. One woman in her 30s said requests to see a specialist in a neighbouring health board had been turned down, and that her lupus had worsened as a result. Another patient said access to care became more difficult after moving from England to Wales.

The research was led by Rupert Harwood of Swansea University Medical School, who himself lives with several autoimmune conditions.

His own experience reflects the wider concerns raised in the report. After developing visual symptoms in 2016, he was advised to see a neuro-ophthalmologist, but no such service was then available in Wales. A referral to England was not successfully made until 2025, and he is still waiting for an appointment.

Mr Harwood said the present system can leave patients at a disadvantage if they cannot afford to seek private treatment outside Wales.

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

Researchers are calling for a review of the out-of-area referral system, better access to specialist services and greater investment in diagnostic testing to reduce delays and improve outcomes.

Two houses lost and a third badly smoke-damaged as villagers rally to support those affected

THREE families have been forced from their homes after a major fire tore through a terrace in Letterston, destroying two properties and leaving a third badly affected by smoke.

The blaze broke out at around 4:00pm on Wednesday (Apr 15), prompting a major emergency response from fire crews across west Wales.

Appliances were sent from Fishguard, Haverfordwest, Milford Haven, St Davids, Narberth, Carmarthen and Tumble as firefighters worked for hours to bring the incident under control.

Residents nearby said they first noticed what looked like a dark haze outside before realising smoke was pouring from the row of houses. As the seriousness of the situation became clear, people in neighbouring homes were told to get out.

Witnesses described seeing flames race through the roof spaces of the terrace, while windy conditions made the fire harder to contain. There were also reports of loud bangs as the blaze spread close to overhead power lines.

Fire crews remained at the scene into the evening, supported by utility workers dealing with the electricity supply. Some nearby homes were left without power until late that night.

By the time the fire was out, two houses had been completely gutted. A third remained standing but was left uninhabitable because of heavy smoke contamination inside.

Among those affected was a young family with a three-month-old baby. Although their house was not destroyed structurally, smoke damage is understood to have ruined furniture, clothing and other possessions, including items for the child.

All three households have since moved in with relatives or friends while they deal with the aftermath.

Despite the scale of the incident, nobody was injured.

The fire has shocked the village, but local people have quickly stepped in to offer help, with fundraising appeals launched to support those who have lost their homes and belongings.

How to help

Fundraising appeals can be found at:

gofundme.com/f/help-young-family-return-home-after-smoke-damage

gofundme.com/f/friends-house-destroyed-by-fire-f24y5

gofundme.com/f/the-families-effected-by-the-fire

Swansea Crown Court entered formal not guilty verdicts on all counts, bringing the case to an end

A HAVERFORDWEST man has been cleared after the prosecution offered no evidence against him at Swansea Crown Court.

Luke Phillips, 23, of Woodlands Park, Haverfordwest, had previously faced charges relating to indecent images of children and extreme pornography.

The case came before His Honour Judge Thomas KC on Monday (Apr 13).

When the matter was called on, the prosecution offered no evidence on all counts.

Formal not guilty verdicts were then entered on each count, bringing the proceedings to an end.

Phillips was represented by barrister Ian Ibrahim.

The outcome means there is no further action to be taken in relation to the case.

It is understood that property seized during the investigation can now be returned following the conclusion of the proceedings.