Reaching Out

India is different. The world's largest democracy with a population of more than a billion in its million square miles, India is a land of contrasts. It is hard to believe sometimes that India is a single country so different are its provinces. From snow-capped mountainous Kashmir in the North to the steamy coastal tropics of Kerala at the very southern tip, India has at least nine different religions and more than twenty languages.

Of course a country of such diversity and scale poses healthcare problems just by virtue of scale. Medicines are sometimes harder to obtain and the workload of the neurologists higher. In India, there are more than a hundred thousand for every such specialist.

But health and healthcare is so much more than just numbers. In a country where there is less healthcare to go around, tough decisions sometimes have to be taken. I was recently told of a pregnant twenty-six-year-old woman with deteriorating eyesight forced to choose between termination of her pregnancy or permanent blindness for the rest of her life. Although, around six decades ago now, the story was just as strong. It is a measure of the progress of Indian medicine that such choices are a thing of the past.

As I said, India is different. The sheer scale of the country makes travel a challenge. Few patients can spare the time or afford to travel long distances to the big cities for treatment.  And of course Parkinson’s poses its own problems of mobility, limiting access to healthcare.

But In India there is a tendency to view things laterally, to see each limitation as an opportunity. Deprivation and distance promotes creativity. Against this backdrop, Maria Barretto, a trained clinical psychologist with a particular interest in mental health, reflected “there was really nothing happening at that time”. She said “At best they would get a diagnosis... There was no education program." Maria recognized the opportunities presented in India and reasoned that, if people with Parkinson's could not travel, then it made sense to reach out and take the program to them. But that takes a lot of energy and drive.

Emerging from this germ of an idea in 2005 was a community based model of care for Parkinson's, taking advantage of what was available rather than focusing on what wasn't. Above all, the program engaged local community support. Designed centrally in Mumbai, the program emphasized self-management as a cornerstone of health in Parkinson's. Local facilitators gave it a local feel and helped engage people with Parkinson’s. Maria is quick to acknowledge an army of helpers who not only helped in the creation of the program but also the training of facilitators and volunteers.

The first community centre was in suburban Mumbai and relied initially on volunteers. But Maria soon recognized the need for proper funding. Never easy for any new idea but especially challenging in India where other healthcare needs were seen as more pressing. The key proved to be research. Maria was told that if it could be framed as a research question, funding might be more forthcoming. And so it proved.

What started as a single event in a single centre soon became a 16 session program of education being delivered at multiple locations. As always in India pragmatism is key. It is not possible, for each centre, to bring in experts from Mumbai. "So each time we open a new centre, we identify local resources. We find a local coordinator and train them to deliver the program ".

An email from a colleague in 2010 started a chain of events leading to Maria attending  the World Parkinson Congress (WPC) in Glasgow that year. Awarded a travel grant to attend, she made the most of the opportunity, presenting a poster, asking questions, making suggestions, and generally enjoying the meeting. But perhaps the thing that struck her most was the scarcity of Indian, African and far Eastern faces. The "World" Parkinson Congress was too much about the USA and Europe. It needed more representation from developing countries. After all, what did people in the West know about healthcare in India? Exchange of ideas both ways was vital.

Conversations with Eli Pollard, WPC Executive Director, about this balance led to Maria becoming more formally involved, becoming a key member, and later co-chair, of the Leadership Forum Committee for the Portland and Kyoto WPC meetings, with particular  emphasis on the forum as an opportunity for exchange of ideas. 

The community model has gone from strength to strength. From the first centre in 2005, the model is now being used in 65 urban, rural and tribal centers in 15 states across India, using the local language. More than 35,000 people have participated in these programs, raising awareness of Parkinson's amongst three quarters of a million people.

Maria would be the first to admit that the work is not finished, indeed it may never be finished. Already plans are afoot to expand the model into Africa. When I spoke to her recently, Maria emphasized the importance of teams, playing down her role in this work. But, putting modesty aside, it is hard to imagine someone who has had a greater impact in their country's healthcare management than Maria Barretto. There will always be tough choices to make in Indian healthcare but at least Parkinson's is in good hands. 

And what of the pregnant young woman I mentioned, facing that most terrible choice between her eyesight and her baby? What did she decide, back in 1959? She chose the baby, in the full knowledge that she would face a life of blindness. Shortly afterwards she gave birth to a girl. They christened her Maria. And I think you know the rest.