ON THE NEW LIFE EXPRESS
Dr Mamta Bhushan Singh, one of the 3,000 neurologists in the country, deserves a special shout-out. Besides holding down her full-time job as a professor of neurology at the All India Institute of Medical Sciences (AIIMS) in New Delhi, she works tirelessly to raise awareness about epilepsy, a condition that has affected over 13 million people in the country. She travels to remote parts of the country on a train, the ‘Lifeline Express’, to treat patients with the condition as part of a medical project run by the Mumbai-based NGO, Impact Foundation. The project—to reach out to the most underprivileged and provide them with free health care—has been running for 27 years now. Dr Bhushan Singh has had her own epilepsy clinic on the train for 10 years, and has just returned after spending a weekend in Forbesganj, Bihar.
Ask her about why she commits her weekends to the cause, and her reply captures the problems epilepsy patients face in India. Children can become seizure-free or at least control their seizures in most cases if they take medicines. But many aren’t diagnosed until much too late and, by then, they will have wasted their formative years.
“A most common occurrence is that many have had to wait for treatment for years, even decades. Children with epilepsy drop out of school at a young age, and at 20, when they receive their first treatment, they’re rendered unproductive members of society.” The reason why patients are not getting treated early is an almost total absence of epilepsy primary care. Over the course of the years, that aspect—of patients having to wait for so long—remains unchanged.
But how did she begin on the journey of grassroots advocacy? She credits the
Palatucci Advocacy Leadership (PAL) Forum, organised by the American Academy of Neurology, which specifically trains neurologists to become part of policy-making processes. Singh was one of the two international participants selected for the programme in 2008. Upon returning to Delhi, she was determined to get started. Singh convinced the people in charge of the Lifeline Express, and set up her own clinic on the train in 2009. Today, after many years of working alone, she has a small staff of epilepsy educators on the ground who counsel people. In the evenings, she gathers local doctors—many of whom are trained to diagnose epilepsy—at her stops to keep them in the loop. “After the initial clinical diagnosis, we provide patients with at least a month’s medicines. Patients need to see the effect of the medicines. That might take away some of the scepticism about the impact of the pills.”
Needless to say, Dr Bhushan Singh has won several awards for her efforts, and has even returned as a mentor at the PAL workshop. She is a member of the Indian Epilepsy Society and the Indian Epilepsy Association, among others. Above all, she has inspired countless patients to look after themselves, when no one else did. ■
“IT’S COMMON TO FIND PATIENTS WHO HAVE HAD TO WAIT FOR TREATMENT FOR YEARS, EVEN DECADES”