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Epilepsy patients stockpiling medicines as shortages anxiety grows

Professor Ley Sander: Shortages of epilepsy drugs have become a big issue
Professor Ley Sander: Shortages of epilepsy drugs have become a big issue

Epilepsy patients are stockpiling medicines as social media amplifies fear of further shortages, a charity has told C+D.

“A lot of people with epilepsy are stocking up” on medicines, according to Epilepsy Society medical director Ley Sander, with some requesting an “extra month of drugs” or claiming they have forgotten their prescription or lost their supply.

The charity has seen an increase in calls to its helpline in recent months, as people ring up if they “can’t get their drug for three days”, Professor Sander told C+D last week (August 20).

“Until six months ago, it would be rare to have people running out of medication,” he said. “Recently this has become a big issue.”

In May, pharmacy minister at the time Seema Kennedy told MPs the government would “express its concern” to manufacturers of epilepsy drug Sabril for the second time, in response to ongoing reports of regional shortages.

Professor Sander stressed to C+D that he has not seen shortages resulting in “problems – because there are always alternatives”, but warned that “many problems coming together make a big storm”.

While most epilepsy drugs have a generic equivalent, patients with chronic disease can be anxious about a lack of consistency in their medication, he said. “Anxiety is a well-known trigger for seizures.”

There are many issues behind the current shortages, but concerns have been amplified by an upcoming Brexit, he suggested, with some patients “very concerned because their tablets are made in Hungary or Portugal”.

Patients’ fears are then further “exaggerated by social media”, Professor Sander added. “That creates more anxiety and feeds into the mill.”

Earlier this year, a C+D poll suggested that four in 10 pharmacists had seen evidence that their patients were stockpiling in preparation for Brexit.

The Department of Health and Social Care has told healthcare professionals to advise patients “not to store additional medicines at home”.

Have you experienced any shortages of epilepsy medicines?

Bob Dunkley, Locum pharmacist

As someone who suffered seizures in early adulthood these people have my sympathy. However, the medications are just not there and however much sympathy I have for people with seizures, I cannot magic up their medicine. We do find ourselves on the horns of a dilemma- do we wait for the medication to return or do we give another brand? Either way the person is at increased risk of having a fit. Having had numerous of these, I can tell readers it is not a fun experience. Oh that I could wave my magic wand....

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