Experience at Amar Seva Sangam: How does Tamil Nadu keep its spinal cord patients alive?

Shaun Cleaver, PhD

Prior to focusing on research, I worked to develop global health rehabilitation programs. Between 2003 and 2010, most of my efforts were focused on rehabilitation in Haiti. Although this experience involved many challenges, one was particularly heart-wrenching: that of people whose spinal cord injuries were leading to paralysis and loss of sensation.

“Heart-wrenching” might be too soft a term. I knew from my training as a physiotherapist that spinal cord injuries involved major changes to a person’s function and transformative changes to their lives. I knew that significant resources were required to allow people with spinal cord injuries to flourish. But I was not prepared for situations in which no one believed that this was possible, and the system was premised upon this hopelessness.

A happy moment during a home visit of a person with a spinal cord injury, Artibonite Valley, Haiti (2008)

When I worked in an acute care hospital in Haiti and a person presented after a spinal cord injury, our usual medical/surgical care plan was to leave them immobile for a few days to see if there would be any return of motor function or sensation. If there were no signs of neurological improvement, we would send the person home. The collective understanding among the health care team was that a life with paraplegia or quadriplegia was not worth living. Even if this life was worth living, it would draw limited resources away from other priorities. So the shared understanding was that it was best to do nothing.

I tried to induce change on this system. I am confident that there were some small wins, but for the most part, my main contribution did not bring transformative change on this system; it was instead to witness the outcomes of the status quo.

For those versed in the secondary effects of spinal cord injuries, the status quo followed a predictably tragic trajectory. Without adaptive equipment, those who were injured would spend all their time lying down, typically in a dark room. Since they were unable to move, these individuals experienced areas of sustained pressure on their skin and flesh. The lack of sensation meant they were unable to feel that there was something wrong. With no movement and no sensation, their skin broke down into wounds. Paralysis and altered sensation also created problems for managing bowel and bladder functions; allowing these standard human activities to become additional health problems. Loneliness combined with hopelessness soon led to depression. They would eat little to nothing. With no healthcare, no nutrition, and no hope, the people who I followed generally followed an ominous trajectory before passing away around six months after their injury.

As stated earlier, seeing this happen was at very least heart-wrenching. But maybe it should be expected? After all, Haiti was a low-resource environment with a fragile healthcare system. Without the expertise and resources of either spinal surgery or intense acute-care rehabilitation, what else could one expect?

For nearly a decade, I was reasonably comfortable with a conclusion of “what else could one expect?” I was comfortable with this – until witnessing another low-resource and chaotic environment with a very different trajectory.

A few weeks ago, I had the pleasure to visit Amar Seva Sangam (ASSA) in Tamil Nadu, India. While there, I was exposed to the organization’s lively and dynamic spinal cord injury program. Given my experiences in Haiti, I figured that the healthcare system in Tamil Nadu must contain a smooth continuum between the acute and rehabilitation phases of care for people with spinal cord injuries.

To my surprise, the actual story was quite different than I expected. Zack Legault, a McGill physiotherapy student on clinical placement in the spinal cord unit, shared with me the typical trajectory of care for persons with spinal cord injury in southern Tamil Nadu: 

Zack Legault, McGill physiotherapy student working with a person with a spinal cord injury as part of his clinical placement at Amar Seva Sangam.

"There seems to be a common profile of patients who have been isolated at home and stuck in bed for the past five plus years before coming to ASSA. In many instances, the family and the patient will not understand the severity or extent of the injury. Instead, families will search out and pay every local healer they can find, thinking – hoping – that their loved one will recover and be able to walk again. 

There have been many times when a family has delayed a patient being admitted to ASSA for rehabilitation because they were told by the ASSA rehabilitation staff that, ‘we will not be able to make him walk again.’ Once the family has exhausted all resources or the patient develops medical complications like bed sores or urinary infections, then the family may finally accept the reality of their situation.” 

For colleagues who are accustomed to rehabilitation in high resource settings, the trajectory of spinal cord injuries in Tamil Nadu must be heart-wrenching. Meanwhile, I have a different reaction:

How in the world did those people survive for five years after their spinal cord injury without rehabilitation?

 As I would hope most readers will realize, Haiti and India are very different places. If I turn the magnifying glass around and look at my own perspective, there is no obvious reason why I would expect the situation to be the same in both Haiti and southern Tamil Nadu. Nonetheless, these two contexts do share some similarities – both are low resource, both are overwhelmingly rural, both have weak rehabilitation systems – that make it more interesting to compare the differences.

So what are the differences that allow people in Tamil Nadu to live five years after a spinal cord injury and then engage in rehabilitation when they are ready?

For people who experience spinal cord injuries in Haiti, and other places where similar stories are common, the answer to this last question could potentially make a major difference.

About the author

Shaun Cleaver, PhD, is a physiotherapist and postdoctoral fellow at McGill University, School of Physical & Occupational Therapy, Faculty of Medicine. Shaun is a recipient of the 2017 Steinberg Global Health Postdoctoral Fellowship which supports researcher who focus on issues related to global health in low- or middle-income countries or among Indigenous populations in Canada. Shaun’s main area of study is how social welfare policies affect the lives of people with disabilities in Zambia. Prior to this focus, he worked on the development of rehabilitation services in Haiti. As part of his involvement with the Global Health Rehabilitation Initiative (GHRI), Shaun visited GHRI partners in Karnataka and Tamil Nadu states in India.