REPORT WARNS OF POSTCODE LOTTERY IN SPECIALIST SERVICES

PATIENTS living with multiple sclerosis in Wales are facing round trips of up to six hours for specialist care, with some treatment decisions being shaped by travel difficulties rather than clinical need, a major new report has warned.

The report, published ahead of World MS Day on Saturday (May 30), says services across Wales are under growing pressure, with shortages of specialist staff, long waits for mental health support and major differences in access to treatment depending on where patients live.

MS Society Cymru and Merck say urgent action is needed to ensure people with MS can access consistent, timely care closer to home.

Multiple sclerosis is a lifelong condition affecting the central nervous system. It can cause symptoms including blurred vision, fatigue, pain, mobility problems and difficulties with balance and movement.

More than 6,900 people in Wales are living with MS, with prevalence reported to have risen by 13% since 2019.

Rural patients hit hardest

The report found that geography is having a major impact on patient care.

Some people, particularly in rural areas, face round trips of up to six hours to access specialist MS appointments. The report also found that some patients had changed treatment options because of long travel times, rather than choosing treatment based on their individual medical need.

The findings will raise particular concern in west Wales, where patients have long faced concerns over access to specialist NHS services and the distance many people must travel for hospital care.

In Hywel Dda, which covers Pembrokeshire, Carmarthenshire and Ceredigion, the report estimates that 749 people are living with MS, while investigators reported a caseload of 891.

The report says Hywel Dda provision includes 1.3 whole-time equivalent consultants and 2.2 MS nurses, with key workforce gaps identified in neuropsychology, Advanced MS Champion support and MS occupational therapy.

Hywel Dda patients are among those who rely on specialist MS services provided through Swansea Bay, adding to concerns about whether people in rural west Wales can access the same level of care as those living closer to major specialist centres.

In Mid Wales, the report says patients are often split between multiple Welsh and English providers, making coordination, accountability and safety monitoring more difficult.

Staff shortages

The report warns that the MS workforce in Wales is already stretched.

It found there are 11.1 whole-time equivalent consultant neurologists with a specialist interest in MS and 16.2 whole-time equivalent MS nurses responsible for a reported caseload of 6,643 patients.

MS nurses are handling an average of 410 patients each, around 30% above the recommended sustainable level of 315.

The report also warns of a looming succession problem, with seven consultant neurologists and eight MS nurses across Wales approaching retirement in the next five years.

It says the lack of a replacement pipeline risks worsening an already fragile service.

North Wales worst affected

According to the report, North Wales has the lowest MS consultant availability, the highest MS specialist nurse caseloads and the lowest access to the most effective treatments for new patients.

In some parts of Wales, more than 70% of newly diagnosed patients have access to higher-efficacy disease-modifying treatments. In other areas, access falls as low as 16%.

North Wales patients are particularly reliant on services delivered through the Walton Centre in Liverpool, meaning some people must cross the border for specialist care.

The report says this creates further barriers for patients who are already dealing with fatigue, mobility problems and other symptoms linked to MS.

Mental health gap

The report also raises serious concerns about mental health support.

Patients can face waits of more than 12 months for neuropsychology support, and only patients in Cardiff and Vale and Cwm Taf have access to MS-specific neuropsychologists.

The report says almost all people living with MS in Wales have difficulty accessing MS-specific psychological support.

It warns that depression rates are two to three times higher among people with MS than in the general population, making the lack of specialist support especially concerning.

Home support is also limited. Only three health boards were found to have a functioning home visit service, despite many MS patients experiencing mobility problems or being unable to drive.

The report says limited public transport in rural areas makes access even harder, with some patients unable to attend appointments without a car.

‘Ticking time bomb’

Shelley Elgin, Director for Wales at MS Society Cymru, said: “MS can be debilitating, exhausting and unpredictable. People with MS in Wales should not have to plan their health around geography, yet this report shows some patients face up to a six-hour round trip just to access the care they need.

“Right now, the neurology workforce in Wales is overstretched and the lack of succession planning is a ticking time bomb. We also have huge concerns about the lack of MS-specific psychological support and home visit services, which are leaving people with MS feeling isolated and unsupported.

“We need urgent, coordinated action to address these inequalities, support the Welsh MS community, and tackle this crisis now.”

Professor Neil Robertson, Professor of Clinical Neurology at Cardiff University, said MS care had advanced dramatically over the last two decades, but access to specialist services remained uneven.

He said: “As a neurologist, I have seen how dramatically MS care has advanced in the last two decades — but I have also seen how uneven access can be to specialist services, and how workforce constraints and geography can get in the way of the care people need.

“This mapping paper gives Wales a clear blueprint: where services are strong, where the gaps are, and how we can work together to build a more equitable, sustainable MS service for patients and families.”

Stuart Nixon MBE, an MS Society ambassador living with MS, said services in Wales needed help now to avoid a worsening crisis.

He said: “With consultant numbers half that of the UK as a whole, and MS nurses with a third more patients than other nations, access to medical specialists is poor.

“Given the present lack of adequate succession planning, this situation could become catastrophic very soon. MS services in Wales need help now to avoid this.”

Call for action

MS Society Cymru and the report authors are calling for stronger specialist MS services in Mid Wales, a better-resourced specialist centre in North Wales, improved workforce planning, better digital systems and more consistent access to care closer to home.

They also want minimum staffing requirements for specialist MS professionals, standardised policies for annual reviews and better planning to replace retiring consultants and nurses.

The report says that without coordinated action, the workforce crisis and service gaps will worsen, potentially compromising care quality and patient outcomes across Wales.

The Herald has asked the Welsh Government and Hywel Dda University Health Board for comment.