– Aneurin Bevan Health Board: MS drug not offered to patients
– Aneurin Bevan Health Board: Lack of access to MS drug for mobility improvement.
Accident – Death – Obituary News : 
A Caerphilly woman with Multiple Sclerosis (MS) is frustrated and feels like her “life is being played with” as she continues to be denied access to a potentially life-improving drug, even four years after it was made available on the NHS in Wales.
The Public Services Ombudsman for Wales has recently criticized the Aneurin Bevan University Health Board for its failure to offer fampridine, a drug that has been found to improve walking for some MS patients, to any eligible patients. It is estimated that around 500 people in the health board’s area are eligible for the drug.
Fampridine was approved for use within NHS Wales at the end of 2019, and it has shown promising results in improving mobility for patients with MS.
The investigation by the ombudsman was initiated following a complaint by a 57-year-old patient, identified as Mrs. X, who has been in the secondary progressive stage of the disease for approximately ten years since her MS diagnosis in 2009.
The Health Board has cited a lack of resources as the reason for not being able to offer the drug. They mentioned that a business case is currently being developed to secure the necessary funding and recruit suitable staff for the safe roll-out of fampridine treatment.
Furthermore, the Health Board clarified that they cannot refer patients to other nearby health boards, as those boards already have waiting lists for accessing fampridine within their own areas. They also emphasized that fampridine is not NHS-funded in England, eliminating the possibility of seeking an agreement to refer patients there for treatment.
The Public Services Ombudsman for Wales, Michelle Morris, expressed her concerns over the delay in providing fampridine to eligible patients. She highlighted that according to Welsh Government guidelines, newly approved medicines should be offered within 60 days of approval. However, the Health Board estimates that even if the funding is approved immediately, it would take another 3 to 6 months to recruit staff and start offering fampridine. This means that patients may have to wait until mid-2024 to access the potentially life-improving medication.
Morris described this delay as unacceptable, causing injustice to Mrs. X and other patients who are uncertain about when or if they will have access to fampridine. She emphasized the need for urgent action to address this issue and ensure timely provision of the drug.
What is Fampridine?
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Fampridine is a drug that has been shown to improve walking speed for some adults with multiple sclerosis.
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It is only available on prescription and should be supervised by a doctor with expertise in MS.
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Approximately one-third of people with MS experience improved mobility with fampridine, and only this group would be prescribed the drug in the long term.
In light of the ombudsman’s findings, several recommendations have been made. The Health Board is urged to apologize to Mrs. X and establish an action plan with specific timelines for providing fampridine. Additionally, the ombudsman requests that the report be shared with the relevant committee responsible for overseeing and regularly reviewing the action plan’s progress.
The Aneurin Bevan University Health Board has accepted the ombudsman’s findings and agreed to implement the recommendations. In response to the situation, a spokesperson for the Health Board expressed their regret and stated that they would contact Mrs. X to apologize for the distress caused.
The spokesperson further added, “We are currently developing a comprehensive plan to meet the ombudsman’s recommendations regarding the introduction of fampridine in our Health Board area.”
Conclusion
The ongoing delay in providing fampridine to eligible MS patients in the Caerphilly area of Wales has caused frustration and disappointment. Despite the drug’s approval for use within NHS Wales in 2019, a lack of resources and recruitment challenges have hindered its implementation.
The Public Services Ombudsman for Wales has criticized the Aneurin Bevan University Health Board for their failure to offer fampridine to eligible patients and has called for urgent action to rectify the situation. It is hoped that the Health Board will promptly address the recommendations and ensure timely access to this potentially life-improving medication for those in need.
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– Aneurin Bevan Health Board: MS patients denied access to potential walking aid
– Lack of MS drug accessibility leaves Aneurin Bevan Health Board patients without walking support.
