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Creating smart schools against epilepsy in India

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Creating epilepsy-smart schools through teacher training has been the subject of initiatives in many countries. In India, a three-year initiative is underway under the leadership of Dr. Sulena Singh, who works at a government hospital in rural Punjab.

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Children spend a lot of time in school, and that includes children with epilepsy. But most teachers don’t receive training on what epilepsy is, what seizures look like, or what to do if a student has a seizure.

Creating epilepsy-smart schools through teacher training has been the subject of initiatives in many countries. In India, a three-year initiative is underway under the leadership of Dr. Sulena Singh, who works at a government hospital in rural Punjab.

Dr Sulena: So when I started working here, I found a lot of kids coming to see us with epilepsy, so I thought, let’s start something related to epilepsy. I was very lucky to be guided by Gagandeep Singh. He guided me in the project. I am the principal investigator of the project and we have four other co-investigators, including Dr. Gagandeep, as well as a pediatrician, we have people from community medicine and the department of medicine.

We got it funded by the Indian Council of Medical Research in Delhi. It is a three year project. We have investigated the registers. There is a project in India, the Rashtriya Bal Swasthya Karyakram (RBSK), or National Child Health Program. This covers 21 to 30 diseases, including epilepsy. It was launched in 2013 and the aim is to screen children between the ages of 0 and 18, especially those studying in public schools. They are screened and then referred to primary care, secondary care and tertiary care if necessary. We are therefore trying to see to what extent this program covers epilepsy.

There is a mobile health team that visits every school every year. They screen all the students for any possibility of epilepsy and if they find it they give them a card and they refer them to the hospital. But there is a gap – sometimes children don’t come to school, for many reasons – logistical problems, personal problems. We screened for a year and out of approximately 60,000 students enrolled, there were only 41 children with epilepsy.

Based on prevalence estimates, there should be between 480 and 600 children with epilepsy in the registry. Even though half of these children are out of school and would be missed, there is still a big gap between the 41 students listed as having epilepsy and the actual number of students with epilepsy.

Dr Sulena: To compare these results, we conducted two other surveys. One was in the community and the other was school based. We’ve covered 10,000 children in each, and we’re trying to find out how many children have epilepsy.

The results of the screening registers and the community survey – there is a big gap between the actual children who have epilepsy and those who seek help, for treatment. Many factors contribute to this treatment gap. First, people are unaware of epilepsy. And there’s a lot of stigma – people don’t want to talk about it. Even now, when we go out for surveys, we get help from ASHA workers, volunteers from their community. They know a child is having seizures, but sometimes the parents don’t agree, they don’t come forward and say the child is having problems. And that contributes to the treatment gap.

We thought that if we educated teachers – half of childhood time is spent in school and with teachers, so if teachers are positive for this disease, they will be more open to children who have epilepsy and will support them more, and I think that will go a long way to improving epilepsy coverage.

We did a program for teachers where we did an intervention – we educated the teachers. We invited four neurologists; they gave lectures which were very interactive and on top of that at each lecture there were role plays performed by the students of the nursing, physiotherapy and speech therapy courses. In the vernacular.

It was a very interesting thing to see how they showed the different types of seizures. Second, there was a discussion of myths and misconceptions in our community about epilepsy. Third, what rescue medications are used in children during a seizure and what first aid should be given to a child with epilepsy. It was a one-day program and to assess the results we did a pre- and post-evaluation of the teachers. We get the parsed results now on this.

So we found it to be a fruitful exercise. The next day we met with a subgroup of teachers and discovered that they had sent us pictures of their morning assembly. They trained other teachers and students. We found that very inspiring for them. We thought we could do more in this effort, so now we plan to further educate teachers about epilepsy who can really make a difference in the lives of these children.

It’s amazing – it’s so awesome. How many teachers came to the event?

Dr Sulena: There were about 250 teachers.

And then they went back to their own schools and taught everyone else what you had taught them? What types of scenarios were played out?

Dr Sulena: We did a very interesting role play – we first showed that there is a classroom, a child has a seizure, and a teacher and a student take care of it – and they all do the bad things. So we show all the wrong things. Then we give a lecture on how to handle it, then another role play, but this time it’s handled the right way. This was appreciated by the teachers as they could see where they might be making mistakes.

We also trained the mobile health teams during this one-day workshop. Now we plan to see if it made a difference by looking again at the screening records for this year. When they do the screening, they have no protocol, no lists, no questions – it’s just knowledge they learned when they graduated. They are AYUSH doctors, alternative medicine doctors in India, so sometimes there is a gap in their knowledge of epilepsy. We have regular meetings with them and teach them small parts, but for the teachers, I would like to do it on a larger scale so that not just a district but the whole system is educated about it.

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Dr. Sulena is in the Division of Neurology, Guru Gobind Singh Medical College and Hospital, Faridkot, Punjab, India.

The project is supported by an ad hoc grant (No.5/4-5/189/Neuro/2019-NCD-1) from Indian Council of Medical Research, New Delhi.

Read more about the project on the ILAE website.

This episode was reported, edited and produced by Nancy Volkers.

Contact ILAE with comments or episode ideas at [email protected]

sharp waves the content is intended for informational purposes only and not as medical or clinical advice. The International League Against Epilepsy is the world’s largest association of health professionals and scientists working for a world where no one’s life is limited by epilepsy. Visit us on Facebook, Twitterand Instagram.