Annals of Indian Academy of Neurology
: 2016  |  Volume : 19  |  Issue : 4  |  Page : 531--532

Another gap in epilepsy care

Victor Patterson 
 Department of Clinical and Experimental Epilepsy, UCL Institute of Neurology, London WC1N 3BG, UK

Correspondence Address:
Victor Patterson
Department of Clinical and Experimental Epilepsy, UCL Institute of Neurology, Box 29, 33 Queen Square, London WC1N 3BG

How to cite this article:
Patterson V. Another gap in epilepsy care.Ann Indian Acad Neurol 2016;19:531-532

How to cite this URL:
Patterson V. Another gap in epilepsy care. Ann Indian Acad Neurol [serial online] 2016 [cited 2022 Aug 20 ];19:531-532
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Shivpuri is a medium-sized town in Madhya Pradesh, the largest state in India, the second most populous country in the world. Things are tough for the inhabitants of Madhya Pradesh. They are mostly farmers and there has been a drought for a couple of years. Living off the land has become difficult. Last month, the Lifeline Express rolled into town. The Lifeline Express is a "hospital train" run by the Impact India Foundation, a charity based in Mumbai. It is parked in one place for 3 weeks during which specialist doctors come and do free clinics and day surgery for local people with a variety of medical conditions. Epilepsy is one of these, and I have been privileged to be able to help my dedicated Indian colleagues at some of these clinics over the last few years. The train has no investigations, so diagnosis is clinical. The first-line and some second-line anticonvulsant drugs are available, and people can be prescribed about 2 weeks supply free of charge. Hence, last month, I was at Shivpuri on the Lifeline Express for the epilepsy clinic. My translator was a young local doctor who not only presented the seizure history but also gave me insights into how the seizures were affecting the lives of the patient and their family physically, emotionally, and economically. This is what happened.

With my translator, we saw forty people with active epilepsy defined as seizures within the last year, tonic-clonic in all but one. Sixteen of them were untreated. Hence, the treatment gap was 40%. This sounds much better than saying that almost half were not on any treatment for a disease that is eminently treatable. Hence, this is the first gap in epilepsy care in many countries. It is well-known, well-described, and almost completely ignored. The vast majority of the neurology and epilepsy community are busy doing other things. This letter is about the 24 people who were on treatment. Their median number of seizures in the last 3 months was five compared to eight in the untreated group. What was the most commonly prescribed anticonvulsant? You will be surprised. It was not carbamazepine or valproate or phenytoin. It was not even phenobarbitone. It was clobazam [Table 1].{Table 1}

This is a shock. Clobazam gets little mention as an add-on therapy for epilepsy in any established national guidelines on epilepsy management, whether in India [1] (GEMIND) or in the UK [2] (Scottish Intercollegiate Guidelines Network). It is generally regarded as a niche drug for children with "boutique" epilepsies often with myoclonus (though neither of the two patients with myoclonic seizures we saw was taking it). In the patients, we saw clobazam was always prescribed together with a below-maximum dose of a first-line anticonvulsant, most commonly oxcarbazepine.

It is not clear why clobazam is the most commonly prescribed anticonvulsant in this part of rural India. However, its prescription may be now causing problems for this group of patients for two reasons: first, it is likely to be associated with more seizures than the guideline-indicated treatment of maximum dose of a first-line anticonvulsant followed if necessary by another first-line anticonvulsant, alone or in combination; second, its costs must be borne by the patient from earnings which are often meager; 10 mg each day costs Rs. 282 each month. A dose of 800 mg daily of carbamazepine costs slightly less than this and most epilepsy specialists would reckon that a better deal.

Perhaps the misprescribing in this small sample of a small population in a large country is not representative. However, identifying a problem is the first stage of solving it. The Indian Epilepsy Society Guidelines [1] (GEMIND) are excellent and provide a simple and effective way to prescribe anticonvulsants. The problem highlighted here is an education gap between those epilepsy specialists (the few) and the doctors who actually prescribe the drugs for people with epilepsy (the many). The many are really many and reaching them all will be difficult. The neurologists on the Lifeline Express do their best to contact individual prescribing doctors but unless this education gap is tackled on a bigger scale, closing the treatment gap will be like trying to fill a bucket with a hole in it.

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Conflicts of interest

There are no conflicts of interest.


1Indian Epilepsy Society: Guidelines for the Management of Epilepsy in India. Available from: [Last accessed on 2016 Apr 17].
2Scottish Intercollegiate Guidelines Network (SIGN). Diagnosis and Management of Epilepsy in Adults. (SIGN Publication No. 143). Edinburgh: SIGN; 2015. Available from: [Last accessed on 2016 Apr 17].