Aneurin Bevan Health Board: Hundreds not offered MS drug that could have helped them walk
A Caerphilly woman with MS feels like her "life is being played with" after still not having access to a potentially life-improving drug, four years after it was made available on the NHS in Wales.
Today the Public Services Ombudsman for Wales has criticised Aneurin Bevan University Health Board for its failure to offer fampridine to any eligible patients. It is estimated around 500 people in the health board's area are eligible for the drug.
The drug was approved for use within NHS Wales at the end of 2019 and it has been found to improve walking for some patients with the condition, which affects mobility.
The ombudsman's investigation was triggered following a complaint by a 57-year-old patient identified as Mrs X who was diagnosed with MS in 2009 and has been in the secondary progressive stage of the disease for roughly ten years.
The Health Board said it had been unable to offer the drug due to a lack of resources. It said that a business case for the introduction of the drug was being developed, including the need to recruit suitable staff to ensure the safe roll-out of fampridine treatment.
It also said it was not able to refer patients to other health boards nearby, as they already had waiting lists for accessing fampridine within their own areas. Fampridine is not NHS‑funded in England, so the Health Board stated there was no possibility of seeking an agreement to refer patients there for treatment.
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.
"Even if the Health Board’s own Pre-Investment Panel approves the funding immediately, the Health Board has estimated another 3 to 6 months to recruit staff.
"This means that the earliest fampridine could be offered to patients is the middle of 2024. This represents over 4 years since the approval of fampridine as an NHS-funded treatment in Wales."
She added: "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."
What is Fampridine?
Fampridine is a drug that has been shown to improve walking speed for some adults with multiple sclerosis.
It is only available on prescription under the supervision of a doctor with knowledge of MS.
Up to a third of people find that fampridine improves their mobility, so only this group would be prescribed fampridine in the longer term.
The Ombudsman has made a number of recommendations, including that the Health Board should apologise to Mrs X and that it should urgently establish an action plan, with timescales, for the provision of fampridine.
She also asked the Health Board to share her report with the Board or relevant committee who should oversee and regularly review the action plan to ensure that good progress is made and that the actions are completed.
Aneurin Bevan University Health Board has accepted the ombudsman’s findings and agreed to implement its recommendations.
A spokesperson told ITV Wales: “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.”