The Pharmaceutical Journal
Vol 270 No 7250 p723
24 May 2003

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Patients are struggling with the daily realities of an unsatisfactory system — the Epilepsy Action perspective

By Sue Mitchell

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Epilepsy Action is the United Kingdom's leading member-led epilepsy organisation. We work with and for people living with epilepsy and provide information, advice and support to an average of 1,000 people every day. The dependency of seizure control on finely balanced levels of medication means that the whole issue of drug supply is highly charged for our members.

Gone are the bad old days of paternalistic doctors when information on medicines was actively hidden from the patient at every turn. However, many people believe they are still a long way from being empowered "expert patients" and from patient partnerships that feature so heavily in the constant flow of Department of Health initiatives.

For people with epilepsy, medication issues are straightforward. The overwhelming cry would be for things to be "better than they are", but sticking within the confines of this article there are three main issues: consistency of supply, clear labelling and clear drug information.

Consistency of supply in epilepsy medication is crucial. It is generally accepted among epilepsy experts that any kind of drug "switching" can trigger changes in side effects and seizure activity. They are called breakthrough seizures and, for someone whose symptoms were previously fully controlled, such a seizure can be devastating. For the innocent patient on the receiving end of the argument, the penalties can be life-changing: loss of driving licence, loss of job if it is driving-dependent, loss of quality of life and, ultimately, an increased risk of loss of life itself. From our perspective, the cost of switching is too high to risk.

Despite advice in published sources, people with epilepsy still get fobbed off with "it's alright love, they might look different/have a different name/be in a different box but they're identical". Some pharmacy staff might be confident, but when we speak to the drug companies, they themselves will not issue such guarantees.

Consistency of supply becomes something of a joke when people are given a "dolly mixtures" bundle. A bundle of pill packets landed on my desk recently, from a woman who, on collecting her five packets of Tegretol Retard, found she had been given three packs labelled Tegretol Retard and two packs labelled Tegretol CR Divitabs. The Divitabs were French as was the writing on the box. Another bundle came from a woman who had been given four different packs, from different countries and by different manufacturers, supposedly containing identical medicines. We have even had reports of people being given mixed bubble packs in the same box.

Any steps that can stop this kind of thing happening will be welcome. Consistency of supply encourages patient confidence, both in their drugs and in the professionals trying to help them. In turn, this encourages compliance and the result of that is optimum health, which is surely the whole point of the system in the first place. Patient packs might not resolve everything, but they would certainly help reduce the "dolly mixtures" approach.

Clear labelling is another issue that would help in avoiding some of the confusion. In the case of generic drugs or when pharmacists break packs and use the ubiquitous plain white box, the quality of labelling is down to the quality of the label printer at the local pharmacy. Small or bad quality print abounds and confusion reigns — and all too often incorrect supplies are not discovered until the person has no choice but to take the unfamiliar medicine.

One package sent in to me was a Greek box of Tegretol Retard. (As a side issue — has any drug manufacturer ever thought about the impact on people of having medication labelled "retard"? If not, why not?) The bright white and yellow box had a label stuck on it carrying the only information in English. The pharmacist had then stuck a second label over the first, with the instructions so badly overprinted that they were difficult to read. This was the patient's second attempt to get this drug — the surgery receptionist had changed the GP's prescription from Tegretol Retard to Tegretol.

If foreign-made drugs are going to be a permanent fixture, would it not be helpful if manufacturers could ensure that the drugs are at least called the same name in every country? Retard, Chrono, Divitabs, C or EC — pharmacists and doctors might understand the difference or similarity, but for us poor patients it simply causes confusion and anxiety.

Patient packs offer a great opportunity — packs in a language the patient understands and a name that matches their most recent prescription. Continuity is not much to ask for.

Finally, let us look at the beloved patient information leaflets (PILs). We will take it as read that they are not user-friendly. The day an accessible PIL is produced will be a great day for everyone taking medicines. However, they are the only information most of us receive about our drugs. It is a legal requirement in the UK for every pack of medicines to contain an English language PIL. Sadly, this is not the case.

Callers to our Helpline often complain that they have not been given any kind of PIL with their medicines. Parallel imports are also resulting in people getting PILs in foreign languages. This is not only illegal, it shows total disrespect for the patient. Side effects do change, drug information does change, but patients cannot know this if they are not given the information.

We acknowledge that the lack of a PIL may sometimes be down to simple error but it is the kind of error that should not happen. The proposal that pharmacists could photocopy PILs rings alarm bells for patients. What guarantees will be in place that pharmacists will use the latest version or that the copy will be readable? Patient packs, complete with the manufacturers' PILs in English, are the most sensible solution.

It would seem that the use of impersonal language, like "patient", hides two crucial things. Those of us with medical conditions are real people, with all the same goals in life as everyone else. We acknowledge that mundane things like cost and profit play an important role in drugs even getting on to the market. But it would do us all good to remember that the whole point of medication is to improve health and help people live healthier, happier lives. While the issue of patient packs has taken years to meander to this point, patients are struggling with the daily realities of an unsatisfactory system. We deserve better, and I look forward to the day when our members can guarantee getting exactly the same drug, in the same packaging, with the same name, clearly labelled and accompanied by a clear patient information leaflet in English.

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