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 d
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Comments
You will be fed up with all my comment but this is the first time I have looked at your web - as I met a lady who is a senior nurse working with 5 paediatricians in Hereford Hospital, and she had never heard of BEA! I put that right this morning. I HOPE this may result in the reserection of an Action Group. Time will tell.
MEDICATION and PACKAGES
I . I have been given different makes of lamotrogine ( I take very little) The pharmacist did not like changing but some tablet push out packets were arranged in such a way that one knew if one was forgotten, where as the others were not. The No;s in packets were also different, so the pharmacist changed them.
2. Tablet bottles are not only child proof but also adult / senior citizen proof. TOTALY. Can the powers that be not understand that uncoloured arrows cannot be seen by all ! It took about 4 visits the the pharmacist - and running out of tablets- for them to realise the importance of this.Of course it was a weekend.
Regards
Gillian
i take controlled release carbamazepine and in the last year i have been given my AED in packaging from Poland and Italy. everytime i have had the british when my pharmacy has it i feel better as i feel that the foreign versions dont have the same ingredients!
It is VITAL that all people who suffer from epilepsy read not only the PIL but also the tablet descriptions. I was once supplied with 20mg Epilim tablets.
Naturally I returned these to the pharmacists. The pharmacists replaced them with the correct 10mg tablets. Not surprisingly I complained to the association of pharmacists - they stated that that nothing could be done without the packaging as proof.
Maybe the pharmacists knew this because they were determined to retain the packaging.
Hi,
I had a brain tumour removed in 1982 and have been on Phenytoin tablets since, I have had very few seizures in all this time until July this year when my local pharmacy put Epanutin capsules in a bottle marked phenytoin tablets the district nurse also stated that only one signature was on the bottle i.e a picker but the prescription was not checked. I was taking this medication for 3 weeks not realising that there was any differance until I took ill, I have so far now been off work for over 3 months due to this and have had more than 20 seizures in this time, I have never suffered from constant seizures in the past hence i have also become very depressed, i am now having regular visits to hospital seeing specialists and have put the matter in the hands of a solicitor, as the pharmacy, part of boots , have admitted liability and so far offered me compensation of £250.00. I normally earn around £40.000 per year managing a public house but presently only picking up SSP £75.00 a week so i think £250.00 is no where near enough, my job could also be at risk !
I have read many of your items where people are given differant versions of their drugs and this has affected them well i am now a differant person due to the same happening to me.
Brian.
I received 3 different versions of Gabapentin from a pharmacy in a leading supermarket chain.Wen I challenged the pharmacist he made no effort to provide me with the same brand I had been taking for several years, he simply offered to return the prescription for me to go elsewhere. I asked my GP to state on the repear prescriptions the brand I had been taking, had no problems since. Wuld recommend others do the same, pharmacists can then only give the medication stated on the script.