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Aneurin Bevan University Health Board is failing to offer life-improving medication to multiple sclerosis (MS) patients – four years after it was approved for NHS use in Wales.

The Public Service Ombudsman for Wales branded the delay, which affects around 500 patients, “unacceptable” and “concerning”.

The ombudsman investigated after an unnamed patient, Mrs X, complained the health board had failed to offer her fampridine – a drug that helps improve walking for some MS patients.

ABHUB said it could not offer the drug due to “lack of resources” – a position criticised by the ombudsman.

It added that while a business case for the drug was being developed, staff would be needed to ensure the safe roll-out of treatment.

In a report published today, Thursday February 15, the ombudsman said ABUHB should apologise to Mrs X and that an action plan should be urgently drawn up, with timeframes, to provide the drug.

Public Services Ombudsman for Wales Michelle Morris said: “Newly approved medicines should be offered within 60 days of approval by the Welsh Government. It is therefore concerning that fampridine is not being offered to any of the eligible patients within the health board’s area.

“This delay is unacceptable. It has caused and continues to cause injustice to Mrs X, and other patients, who remain unclear as to when or if they will have access to this potentially life-improving medication.”

The report found that even if ABUHB approves the drug’s funding immediately, the earliest fampridine could be offered to patients is the middle of 2024.

The health board accepted the ombudsman’s findings.

An ABUHB spokesperson said: “We are very sorry for Mrs X’s experience and will be contacting her to apologise for the distress this must have caused her.

“We are currently working through a plan to see how we can meet the ombudsman’s recommendations in relation to the introduction of fampridine in our health board area.”

MS Society “repeatedly contacted” about drug availability

Caerphilly Observer contacted MS Society Cymru to better understand the impact fampridine can have on people with MS.

MS Society Cymru told us it supported the findings of the ombudsman.

A spokesperson for MS Society Cymru said: “The decision of the All Wales Medicines Strategy Group in 2019 to make Wales the first country in the UK to approve the routine use of fampridine on the NHS was a significant moment for the MS community in Wales.

“So it is disappointing that, nearly four years on from that decision, not everyone is able to access this drug.

“MS is relentless, painful, and disabling, but this treatment could be life-changing for people living with MS – making an important difference to walking, energy levels and a person’s ability to manage their MS. 

“This treatment is particularly important for people who have progressive forms of MS who often feel overlooked and ignored by the lack of treatment options for them. Fampridine has been proven to be effective in 40% of people who are clinically eligible for it and it can have a significant positive impact on their quality of life. It can speed up responders walking by approximately 25% and significantly enhance their mobility.

“Fampridine is already available to people living with MS in other parts of Wales and we have been repeatedly contacted by members of our community asking why it is not available in this area. 

“Patients living in the ABUHB area are entitled to receive the same level of service as people in other parts of Wales.”