Severe NHS drug shortages are ‘stripping away hope of extra time with loved ones’, charity warns

DRUGS shortages are stripping away “hope of extra time with loved ones” for thousands of Brits, campaigners warn.

Dwindling supplies of riluzole — the only available medication for deadly motor neurone disease — are leaving patients worrying about how long they might live.

Getty Images – GettyRiluzole shortages are stripping away “hope of extra time with loved ones” for motor neurone disease patients, campaigners warn[/caption]

Charity leaders are set to meet with the Government today to discuss the shortage and to “ask for assurance as to what their plan is to resolve the situation”.

It is the latest medicine to spark concerns about supply, with the UK’s drugs shortage list doubling over the last two years.

Jennie Starkey, 51, from Bedfordshire, who is part of advocacy group United2EndMND, said the impact of not being able to get hold of the medication has caused her anxiety.

Jennie said: “That’s two fold – one, worrying what the impact of not taking the drug will be.

“We know the effect is minimal, but as patients it’s the only intervention we have. Riluzole is all we have to give us hope of any extra time with loved ones.

“And two, the anxiety of having to drive from one pharmacy to another trying to source the drug.”

She added: “Speaking with a GP to try and get them to authorise a prescription for the more expensive, named version of the drug Rilutek, as opposed to the generic version riluzole.

“This was difficult as GPs are protective of their budgets it seems.

“It also made you question how much worth society sees in you — Government’s slow response, GPs pushing back, even the MND Association being pretty slow on the uptake before they started to speak out.”

Some 5,000 Brits are thought to be living with motor neurone disease, according to the MND Association.

The condition affects the brain and nerves and causes people to grow weaker over time, with significantly shortened life expectancies.

There is no cure for MND, but current treatments include occupational, speech and language therapy, physiotherapy and specialist dietary advice.

Riluzole is the only licenced medicine to treat the condition in the UK, having first been recommended by the National Institute for Health and Care Excellence in 2001.

The 50mg drug that is taken twice daily has a “modest effect in slowing the disease”, according to the MND Association.

Jennie said it can give us anything from three months to nine months longer on predicted survival” on average, two to three years from the onset of symptoms.

Shortages of the drug were first reported last month, with Health Secretary Victoria Atkins accused of failing to ensure supply levels since.

A spokesperson for the MND Association said they will use the conversation with Government to “highlight the issues the shortages are having on our MND community”.

They added: “Despite reports of additional supply being released into the market we continue to receive reports of people being unable to access the drug, and so we hope to clarify the situation and resolve any issues affecting access.”

A Department of Health and Social Care spokesperson said: “We understand how frustrating and distressing medicine supply issues can be.

“Once alerted to disruptions, we ensured there was an alternative supplier that could make sufficient riluzole stock available to fully meet demand.

“While we can’t always prevent supply issues from occurring, we have a range of well-established processes and tools to manage them when they arise and help mitigate risks to patients.”

It comes after pharmacists warned shortages of NHS medicines are putting lives at risk.

According to the British Generic Manufacturers Association (BGMA), 111 drugs were facing supply problems on October 30 last year and 96 on December 18.

Since then, a further 10 drug supply notifications have been issued.

This amounts to a 100 per cent increase in shortages compared with January 2022.