Yogesh Jain: A community based epilepsy programme in India

yogesh_jainMany non-communicable diseases (NCDs) are diagnosed in outpatient clinics and hospitals when patients present with acute illnesses. After receiving a diagnosis during the healthcare visit, the chronic management of most NCDs needs compliance with treatment and monitoring of disease process. In the absence of good community models, the outcomes of most NCD control programmes can be very poor. Jan Swasthya Sahyog is a non profit organization that runs a community health programme in 70 villages in central India. It has a referral hospital which is accessed by people for their major health needs from over 2500 villages with rural and tribal communities. We have 96 patients with epilepsy in our community programme out of 35 000 indigenous people. Our compliance rates for taking anti-epileptic drugs used to be dismal—at about 40%—even though the drugs were provided free of charge. Myths about the disease and its treatment prevented many more from seeking care. Deaths or major injuries from drowning or falling into fire due to untreated epilepsy were a common occurrence until recently.

In 2012, we decided to take a community approach to the treatment of epilepsy by facilitating the formation of patient groups for people with epilepsy. This provided a platform where patients with the same illness and their families could get together and discuss the disease and its treatment. Community health workers trained in disease management and group facilitation skills steer the meetings.

Information on the disease and its treatment is shared with participants. The health workers encourage discussion of challenges and concerns and identify topics of common interest. Among epilepsy patients topics like structure and function of the brain, the mechanism of seizures, and the issue of pregnancy and anti-epileptic drugs, and risk of epilepsy in their children are discussed, as well as other topics. Most group members felt that not enough time can be spent with each patient in the hospital and health centres and therefore this group fulfils their information needs. Mutual motivation has resulted in greater adherence to recommended treatments and the compliance rate is now over 90%. In fact, the repeat prescriptions for those doing well are done by the health workers and doctors are consulted only every three to six months. We have now four such treatment groups in epilepsy. People can see the effect of compliance with treatment in terms of freedom from seizures and being able to return to school. Family members are encouraged to participate and are trained to provide care.

The success of this idea became more obvious when patient members started coming to these group meetings with new people with symptoms suggestive of epilepsy who were seeking treatment. We have started using a tablet based app that has 15 questions that can be used by a village health worker. A doctor is then consulted to confirm the diagnosis of epilepsy and to plan the treatment. In the last year, we have diagnosed 46 new patients with epilepsy through these village health workers.

The positive experience among people with epilepsy has led us to try this strategy of facilitating disease based patient groups in other NCDs such as type 1 diabetes, sickle cell disease, and major psychiatric illnesses, and in people with alcohol dependence.

Yogesh Jain is a rural doctor and a public health physician working at Jan Swasthya Sahyog People’s Health Support Group, a non profit health organization in rural central India.

Competing interests: None declared.