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Over seven in 10 people with epilepsy in the UK have struggled to get hold of their prescription medication for the condition in the last year, according to research published by Epilepsy Action.

The charity said 1,312 people with epilepsy and their carers responded to an online survey, which was distributed between January to April 2024 and set up to understand how widespread shortages of epilepsy medicines are across the country and what impact they are having on patients.

Of those 1,312 who responded, 941 or 71.7 per cent said they had difficulty getting their prescribed antiseizure medication in the past year.

The survey, run by researchers from the University of Leicester, Aneurin Bevan University Health Board and Epilepsy Action, found the medication carbamazepine was most commonly reported as being in shortage by 92.6 per cent of respondents, followed by clobazam (82.6 per cent) and topiramate (81.5 per cent).

Zonisamide (74 per cent), Lacosamide (71 per cent), Brivaracetam (70.5 per cent), Lamotrigine (65.2 per cent), Levetiracetam (62.8 per cent) and sodium valproate (60.8 per cent) were also in shortage.

Two in five respondents said they felt stress, anxiety or both as a result of shortages.

The researchers said “changes are needed at NHS level, healthcare professional level and patient level” to address the situation and urged the NHS to “develop ways to minimise disruption to the supply chain, focusing on the medications which can’t be easily swapped”.

They also urged health professionals to check if a medicine can be switched safely before recommending alternatives while “people should visit different pharmacies if they find their regular pharmacy is out of stock, as they may use different suppliers”.

One of the researchers, Eric Kyeremaa, said the study’s biggest concern was that patients were offered “different brands or forms of their medicine” when their normal one was not available. He said that potentially put patients at risk.

“For epilepsy, missing doses or switching brands unexpectedly can lead to uncontrolled seizures,” he said. “Some people may also experience new or increased side effects if they are not taking the exact medicine prescribed by their doctor. This was happening even with medicines where switching should never occur.

“The results show the current situation cannot remain as it harms patients and causes unnecessary extra stress and work for patients and their carers.”