Shortages force family to source medicine abroad

A man is campaigning for "dignity" for people with incurable conditions after facing difficulties getting the right medicine for his brother.

Anthony David, whose brother Keith was diagnosed with Huntington's disease about 13 years ago, said he had resorted to getting drugs shipped from France after they had become out of stock in the UK.

Anthony, from from Newcastle-under-Lyme, Staffordshire, has now called on the government to intervene to help make it available again.

A Department of Health and Social Care spokesperson said resupply of hyoscine hydrobromide, which Keith uses, was yet to be confirmed by the supplier but that guidance had been issued to GPs to reduce the impact on patients.

The disease, which runs in families, kills brain cells, and resembles a combination of dementia, Parkinson's and motor neurone disease.

Keith is now living in care with support from a lot of different treatments.

His medicine was previously available at the pharmacy to help manage the over-production of saliva - a symptom of the disease which makes taking medication orally and eating food more risky due to chocking.

Anthony now relies on family friends to post medication from France.

He said this was important to ensure his brother still had a good quality of life.

His brother was diagnosed in 2013, and by 2017 Anthony found his brother had started to decline.

"It's really difficult because seeing someone like Keith who was a free spirit out and about travelling the world, now all we see is all the things you associate with Huntingdon's," Anthony said.

Keith can no longer communicate verbally and is described by his brother as having "all the visible symptoms" of the disease.

"I've tried to get to the bottom of why I can't get this drug, I've been left to try whatever I could," Anthony said.

Baxter, which produces the drug under the name Scopoderm, said that because the UK was no longer part of the EU regulatory framework, a separate review was required in order to continue supplying it after it began manufacturing it at a new facility.

"We have been working with the Medicines and Healthcare products Regulatory Agency to secure approval to supply Scopoderm in the UK," a spokesperson said.

"We are progressing with this as a priority and remain committed to returning the product to UK patients as soon as possible."

"You've got to look at this on a human level, this could be ring fenced for people who need it," Anthony said.

He told BBC Radio Stoke that he was becoming increasingly frustrated with the situation and called on Health Secretary Wes Streeting to intervene.

"My message to him is please help us to get this drug back in supply most urgently because it improves quality of life," he said.

A spokesperson for the Department of Health and Social Care said: they were aware that some hyoscine hydrobromide patches were out of stock in the UK.

"The resupply date is yet to be confirmed by the supplier, however, we have issued comprehensive management guidance to the NHS, including all GPs and community pharmacists, to minimise the impact on patients," they said.

"We continue to work with the supplier and the Medicines and Healthcare products Regulatory Agency, to resolve the issue as soon as possible."

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