A Ramsbottom midwife living with an incurable neurological condition says a lack of access to vital medication on the NHS is "a kick in the teeth".

Annie Taylor-Edwards, who works at Royal Bolton Hospital, says she will be forced to pay more than £200 a month for medication after being diagnosed with multiple sclerosis (MS) last year.

The 61-year-old says she took part in a month-long trial for a dalfampridine to improve her mobility and found that the medication worked.

However, she was later told it was not “cost effective” to offer the drug on the health service, and that she must pay for it herself if she wishes to continue using it. 

Dalfampridine is available on the NHS in Scotland and Wales, but it is unavailable in England and Northern Ireland.

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MS is a condition that affects the brain and spinal cord, and symptoms can include issues with vision, movement and balance.

Annie, who has worked for the NHS for more than 40 years as a nurse and midwife, says it is “unfair” to force those living with MS to pay for a drug which could help them stay mobile and in work.

She said: “When I went to see the [consultant] and he suggested, because I’ve got a lot of left-sided weakness, to start this drug, it’s the only drug that will help with walking.

“To help me with walking, this would be the perfect drug. I had to then wait for a private prescription to come through, and the first month’s trial is free.

“After the first four weeks, because NHS England won’t fund it I have to pay for a private prescription.”

While she could manage the £200 payment while she is in full-time employment, she believes the drug should be free for those on lower or no incomes.

Annie believes dalfampridine will allow her to carry on working for another two to three years before her symptoms become too severe.

She said: “The NHS said [dalfampridine] is not cost effect and my argument is that I’m a productive midwife in a unit that’s extremely busy.

“There’s a national shortage of midwives, if I can’t carry on walking well enough to go to work I’ll have to stop working.

“To be told it's not cost effective to give me this drug is a real insult, it’s a kick in the teeth.

“If I’m one of the 50 per cent of people who take it and it works for me, surely that is cost effective. Is it not more cost effective for me to go to work and be productive in the health service?”

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According to the MS Trust, dalfampridine, which is also known as Fampridine and Ampyra in the United States, has been shown to improve walking speed for some adults with MS.

The 2022 NICE Clinical Guideline acknowledged that the drug is clinically effective for some people, but it is not considered cost-effective.

It was recommended for use by the NHS in Wales in 2019 and in Scotland in 2020.

Annie said: “If I was on benefits I wouldn’t be able to afford any of this so it's not just my fight, it’s a fight for other people who need this drug.”

In response, a Department of Health and Social Care spokesperson said: “NICE plays a vital role in ensuring that the price that we pay for new medicines represents value for the NHS, and that new medicines do not displace other services that provide more health benefits for the same or lower cost.

“These are very difficult decisions to make and it is right that they are made independently on the basis of the available evidence.

"NICE is able to recommend the vast majority of medicines it evaluates for use on the NHS and many thousands of patients have benefited as a result.”