HUNDREDS of disabled people in Gwent are missing out on a drug that aids walking - four years after it was approved as an NHS treatment.
Michelle Morris, the public service ombudsman for Wales, has upheld a patient’s complaint about Aneurin Bevan University Health Board’s (ABUHB) failure to offer fampridine.
Multiple sclerosis (MS) is a lifelong condition affecting the brain and spinal cord, with a wide range of potential symptoms including vision, movement and fatigue.
In December 2019 the Welsh Government approved fampridine for NHS use. The MS Society says the treatment helps one in three people who take it to speed up their walking by around 25 per cent.
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The ombudsman’s investigation found ABUHB has failed to offer the treatment to any eligible patients, of which the health board estimated to be around 500.
ABUHB estimates it will take another three to six months to recruit staff to deliver the treatment which means MS patients will have to wait until at least the middle of the year.
‘Injustice’
Ms Morris launched the investigation after an anonymous patient, “Mrs X”, complained about not being offered the treatment despite its approval for NHS use in Wales.
“This delay is unacceptable,” said Ms Morris. “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 health board said it would be contacting "Mrs X" to apologise for the distress they had caused. It also told the ombudsman it was unable to refer patients wanting fampridine to other health boards as they too had waiting lists for the treatment.
The ombudsman continued: “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 three to six months to recruit staff.
“This means that the earliest fampridine could be offered to patients is the middle of 2024. This represents over four years since the approval of fampridine as an NHS-funded treatment in Wales.”
ABUHB has accepted the ombudsman’s findings and agreed to “urgently establish” an action plan with timescales for the provision of the drug.
A spokesperson for the health board 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.”
A Welsh Government spokesperson said: “We are sorry the patent was unable to access fampridine.
"We expect the health board and clinicians to thoroughly review what happened and learn lessons for similar cases in the future. Fampridine has been routinely available in other health boards since 2021.
"We are committed to ensuring that people living with, or affected by a neurological condition, including Multiple Sclerosis, in Wales are supported to live their best lives, as well as possible by having fair and timely access to high quality services and access to information needed to fulfil their potential.”
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