Failure to offer potentially life improving medication to patients with multiple sclerosis in care of Aneurin Bevan University Health Board
Summary
We launched an investigation after Mrs X complained that the Health Board failed to offer her treatment with fampridine after its approval for NHS use in Wales.
We found that although fampridine was approved by the Welsh Government as an NHS funded treatment in Wales in December 2019, Aneurin Bevan University Health Board had still not put in place arrangements to offer fampridine to Mrs X, or any eligible patients in its area.
During our investigation, we found evidence that the Health Board had estimated that there may be around 500 patients in its area who may be eligible for this treatment. 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 introduction of the drug was being developed, including the need to recruit suitable staff to ensure the safe roll-out of fampridine treatment.
The Health Board said that 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.
Commenting on the report, 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.
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.”
Recommendations
We recommended 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. We also asked the Health Board to share our 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 accepted our findings and conclusions and agreed to implement these recommendations.