Anti-Epileptic Medication Packaging Survey

Summary of findings

Over the years many people have contacted Epilepsy Action to report that being given a different version of their medication has resulted in more or worse seizures or side-effects.  

This has been linked with switching to and from generic or branded versions and with imported drugs, known as parallel imports. People have also told us that they are being given several different versions of their drugs at once.

We decided to do our own initial research, asking people if they had experienced problems as a result of getting different versions of their medication. 1,851 people responded and the results are very telling.

Just under a third (31 per cent) of people had been given medication in different packaging in the last year - this includes different manufacturers' versions, versions made overseas (parallel imports) and mixed bundles of different versions.  Of these people, two per cent said their epilepsy was better, but nearly a quarter (23 per cent) said that their epilepsy was worse. By worse, they mean more seizures or more severe seizures.  

An even higher number of people (32 per cent) said that the different versions had resulted in more or different side-effects, against just one per cent who felt their side effects had improved.  If these figures reflect the experience of all people with epilepsy, over 100,000 people could be having more or worse seizures and over 140,000 people could be having more or worse side effects.

A high 61 per cent of people had spoken to their doctor or pharmacist about being given different versions.  However, only 51 per cent of doctors and 30 per cent of pharmacists were prepared to give people their usual drug versions.  The response that "all the drugs are the same" was given by 13 per cent of doctors and 38 per cent of pharmacists.  Ten per cent of people felt their doctor was uninterested or dismissive.

Of those given different versions of their drugs, 36 per cent refused to accept them.  In response to this, 72 per cent of them were then given their usual medication.  When the pharmacists still refused to provide the person's usual medication, 11 per cent of people decided to go to another pharmacy - an option not available to everyone.

Legally, every patient should be given a Patient Information Leaflet (PIL) every time they collect a prescription drug.  However, our research showed that many pharmacists are flouting this requirement because 18 per cent of people being given different versions of their drug did not receive a PIL.  This rose to 23 per cent of people who were given a mixed bundle of versions and a shocking 53 per cent of people who were given drugs in plain or unprinted boxes.  Some people said they had never received a PIL for their medication.  This is extremely poor, given that anti-epileptic drugs are so powerful and are known for issues with side effects.

The results of this research add weight to the need for people with epilepsy to be given the same version of their drug every time, called consistency of supply.  We hope to encourage more scientific research into an issue that has a direct impact on the health and quality of life for people with epilepsy.