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.

  • Suvarna Moti

    Dear Dr Jain,
    I would like to offer my expertise in facilitating evaluation of this community-based approach for treatment of epilepsy.

  • Bridget MacDonald

    Excellent work!
    Thanks for writing this up

  • Janita Keating

    What an outstanding example of a community focused epilepsy self management programme. The development and trialling of this app was done in remote Nepal: https://www.youtube.com/watch?v=ZlaUKfOza4I . I hope more communities adopt this approach.

  • Shelly Gandhi

    Thank you for the fabulous work you all are doing there. It is amazing for something like epilepsy how many lives can be saved and bettered by just basic (not very expensive) treatment, counselling and support.

  • Mamta Bhushan Singh

    I commend the work being done by Yogesh Jain and colleagues at Ganiyari.

    India has between 12-15 million epilepsy patients. Less than
    3000 neurologists, most located in a few big cities take care of all neurological illnesses including epilepsy. Even if non-neurologists pitch in, there is a severe mismatch between epilepsy patients requiring care and available doctors. In the face of this shortage, the only way the epilepsy treatment gap can be narrowed sometime within the foreseeable future is by enlisting alternative care providers. This could include paramedics, health care workers and nurses.
    Immense potential waiting to be tapped also lies in the use of technology including telemedicine and mobile telephony. The phone app currently being tested at the Ganiyari health facility is one such innovative tool. Unless doctors begin to consider divesting some of their own responsibilities and delegating them to health care workers and smart technology, the lot of epilepsy patients in countries like India is unlikely to improve.

  • John Hixson

    Agree completely and excellent work!! We all know that epilepsy can be an incredibly stigmatizing and isolating condition, which then cruelly often leads to noncompliance and worsening of the condition. I believe that better education and building a community of patients and caregivers who understand the health condition is an increasingly proven approach. We studied this in our Veteran population here in the US, and found the same conclusion. Patient ‘engagement’ has become a buzzword lately, but is absolutely real, especially in many patient groups who have been previously labelled as resistant to self-activation….

  • Mamta Bhushan Singh

    John, on one of my visits to JSS, I was pleasantly surprised to find that one of the most efficient epilepsy advocates who was not only mobilising patients but also ensuring compliance and ‘diagnosing’ patients in the community was an illiterate lady with no formal and very little informal training in the field. I am sure that you would find a visit to JSS extremely interesting. Think about it for your next time.

  • Jerome Chin

    People living with epilepsy share many of the same challenges as people living with HIV, e.g. stigma and discrimination, that contribute to the large awareness and treatment gaps. Community health workers and peer advocates play essential roles in the HIV care continuum. The community approach used by Jan Swasthya Sahyog should improve diagnosis and treatment of epilepsy and other NCDs.