Health
Patients in Wales waiting years for autoimmune diagnosis
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.
Charity
Local St John Ambulance cadets confirmed national first aid champions
ST JOHN AMBULANCE is proud to share that three local St John Ambulance cadets have been crowned National First Aid champions after competing against eight other cadet teams representing counties across Wales.
The team, comprising Emily Williams (Yr 10, Ysgol Bro Gwaun), Ruby Collins (Yr 10, Ysgol Henri Tudor), and Gemma Tilbury (Yr 11, Ysgol Henri Tudor) represented the whole of Dyfed, and demonstrated exceptional skill, teamwork, and composure throughout three demanding rounds.
The competition consisted of a first aid knowledge quiz and exam, followed by a practical skills challenge assessing communication, teamwork, and the ability to perform under pressure—an area in which they excelled. The final round featured a complex, theatrically produced first aid scenario. Here, the team showed remarkable calm and professionalism as they stabilised a casualty with a severe compound bleed involving a large object lodged in the wound. They also managed distressed and aggressive members of the public, and successfully resuscitated an unresponsive, non-breathing casualty using CPR and a defibrillator—all completed in record time.
In Pembrokeshire, cadets train every Monday evening during term time from 5:45–7:15pm, with sessions focussing on practical, hands-on learning of real-life first aid skills, including CPR, defibrillator use, treatment of severe wounds, allergic reactions, choking, strains and sprains, head injuries, heart attacks, hypothermia, and much more. Training is engaging and interactive, often involving active, game-based learning, ensuring there is rarely a dull moment.
Cadets also have the opportunity to support a wide range of events delivered by St John Ambulance Cymru. Working alongside adult volunteers and healthcare professionals, they engage with the public at events of all sizes, applying their skills in real-world, and sometimes life-saving, situations.
Beyond events, cadets are encouraged to share their knowledge within the community, helping to lead first aid demonstrations and inspire others. Previous outreach has included sessions with Scouts, Cubs, Brownies, and Girlguiding groups, as well as senior community organisations such as the Pembroke Lions and specialist charities like Pembrokeshire People First. On a larger scale, cadets played a key role in organising and delivering “Defibruary,” where they helped lead a team of St John first aiders to train over 950 students at Henri Tudor in a single day in February 2026.
If you are interested in volunteering, opportunities are available for cadets aged 11–16 and adults aged 16+. We are always keen to welcome new members and are happy to discuss opportunities for adults to support the cadet programme as youth leaders.
To find out more visit https://www.sjacymru.org.uk/volunteer
Charity
Paul Sartori receives generous support from the James Tudor Foundation
Paul Sartori Hospice at Home is celebrating a major support package from The James Tudor Foundation thanks to an unrestricted grant to help fund the charity’s vital end-of-life care services throughout the county.
The £46,364 grant award ill be paid over three years.
Commenting on the windfall, the new Chief Executive Officer, Laura Hugman, said, “At a time where funding and funding partnerships are challenging, we’re very grateful to The James Tudor Foundation in helping us achieve our aims and passion for supporting and bringing reassurance to the local families who need us.”
Paul Sartori Hospice at Home provides an holistic approach to end-of-life care, which encompasses home nursing, equipment loan, complementary therapies, bereavement and counselling support, physiotherapy, future care planning, and training. The team provides thousands of hours of day and night respite care each year, ensuring that patients can receive the support they need, complementing the statutory provision within the comfort of their own homes.
Judith Williams, Grant Development Officer at Paul Sartori Hospice at Home, expressed the charity’s gratitude: “We’re incredibly thankful to The James Tudor Foundation for their continued generosity. Their support helps us maintain our nursing service, which is a lifeline for many families facing end-of-life care challenges.”
Paul Sartori Hospice at Home offers a comprehensive range of services to individuals with life-limiting illnesses, ensuring they can be cared for at home with dignity, independence, and comfort.
Health
FOI raises fresh questions over plan to close Pontyates GP surgery
Health board accused of misleading claims over recruitment as pressure mounts ahead of final decision
A FREEDOM of Information disclosure has raised serious questions over plans to close Meddygfa’r Sarn in Pontyates, with claims the health board failed to properly attempt to recruit permanent doctors before recommending its shutdown.
The row centres on Hywel Dda University Health Board, which is due to make a final decision on the surgery’s future later this month.
An FOI response reveals that while the board cited a “lack of recruitment interest” in its January report, there is limited evidence of any recent, targeted recruitment campaign specifically aimed at the Pontyates practice.
Instead, the board confirmed that salaried GP roles were advertised in 2020 across its wider portfolio of managed practices — rather than as a focused effort to fill posts at Meddygfa’r Sarn itself. Those vacancies did not result in successful appointments.
‘No real attempt’
Independent Senedd candidate Carl Peters-Bond, who is also a patient at the surgery, has strongly criticised the health board, accusing it of presenting a misleading picture to justify closure.
He said: “They cited a lack of recruitment interest as justification for closing this surgery — but they never actually ran a proper recruitment campaign for it.
“Sending out general adverts years ago is not the same as making a serious, targeted effort to keep a vital community service alive.”
He also raised concerns about the consultation process, claiming it focused on the impact of closure rather than asking whether closure should happen at all.
Fully reliant on locums
The FOI confirms that Meddygfa’r Sarn currently has no salaried GPs and is entirely dependent on locum doctors.
While the health board says this model is unsustainable in the long term, the same disclosure shows several other managed practices across the region also rely heavily on locum staff — some to a significant degree.
Cost data included in the response suggests Meddygfa’r Sarn is not the most expensive practice per patient within the health board’s area.
Alternative options unclear
Another key issue raised by campaigners is the apparent lack of explored alternatives.
The FOI response indicates that the health board does not hold information on alternative local solutions, including potential relocation or different service models within the Pontyates area.
Campaigners argue this suggests closure was considered before all options had been properly examined.
A 52-page independent report submitted as part of the consultation process states that dispersing patients to other surgeries should only be considered as a last resort, after full recruitment efforts and capacity assessments have been carried out.
Health board position
Hywel Dda University Health Board maintains that the surgery, which serves around 4,350 patients, has faced long-standing recruitment difficulties and increasing reliance on temporary staff.
It says a Vacant Practice Panel concluded that dispersing patients to neighbouring surgeries would provide a more sustainable long-term solution.
The board has also acknowledged that transport and access concerns are likely to be a major issue for patients if the closure goes ahead, with a full Equality Impact Assessment expected to be considered before a final decision.
Decision later this month
The future of Meddygfa’r Sarn will be decided at a meeting of Hywel Dda University Health Board on Wednesday (May 28) at Yr Egin in Carmarthen.
With local anger growing and new questions emerging from the FOI disclosure, pressure is mounting on board members to reconsider the proposal.
Campaigners say the case now hinges on a simple question: whether enough was done to save the surgery before moving to close it.
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