Amputees in India find their own way amidst the government’s no-show
Saradchandra Hegde proudly calls himself an electronic doctor. Sitting in the lobby on a bed set against a bottle green wall that is synonymous with his zest, he looks at his wristwatch and asks, “Do you know what horology is?” He used to travel around the country, educating people about the engineering behind watches and time, and putting up seminars. He has seen the revolution of the watches and how they went from analog to digital.
Hegde talks about the young and wonderful times until he met with an accident. He recalls that bright sunny day at Sirsi, his native home where a car hit him. There was a quick build-up of puss on his left leg below the knee and the spot blackened. The doctors cleaned it up, ignored the black spot, and asked him to go home and take a rest. “I wasn’t satisfied with the treatment so I came back to Bangalore and consulted a doctor here,” said Hegde. Days passed and the swelling increased to a point where his leg below the knee started to look lumpy. That is when one of the doctors said that it has turned into gangrene and surgical intervention is required. “I couldn’t process it for a minute. Surgical intervention, meaning what? And that’s when they said the leg has to be amputated,” said Hegde.
Hegde remained in the hospital for one-month post amputation and was required to take complete rest. The hospital provided him with crutches and a walker to assist in walking. Hegde said that the bare minimum is done in the interest of amputees when you look through the lens of Indian government hospitals. He mentioned that he went to multiple hospitals, but couldn’t really find himself a prosthetic limb until his friend recommended him to a couple of NGOs. “The quality of the very first prosthetic limb that he used turned out to be a scary experience. It was poorly built, leading to scratching my joint, triggering septic,” he said.
India has 54,36,000 people with locomotor disabilities as per the data from the 2011 census. A significant percentage of this is a result of lower limb amputations due to trauma-related injuries that include road accidents followed by bone tumors and diabetic conditions.
Another similar story occurred in H. Nagasandra, Karnataka, where yet another callous delivery cost a young boy his leg.
Venkatesh, a para-athlete, was seven years old when the bullock cart toppled over and hurt his right leg. ‘The wound was deep’ recalls Venkatesh, “and it felt like an eternity before they could pull me out from under the cart.” He was rushed to a local government hospital close to his village where doctors put a bandage on and told his parents to relax. Within an hour or so they asked his parents to take him back and advised bed rest. His mother took off the bandage after a couple of days, and to her horror, the wound had turned black. It looked like it had infected skin nearby and had seemed to grow. Venkatesh was brought to the city immediately after and the doctors advised his parents that amputation is the last resort. “There is never an easy way to tell a kid that he won’t be able to run again,” said Venkatesh. “I refuse to be a victim of somebody’s carelessness,” he said.
Dr. Danish, the psychologist, explained the importance of counseling and therapy before and after amputation. “It is as important for the patient to undergo a therapy or counseling before amputation as after,” he said. “Sadly, that is not what the case is. Most of the patients undergo amputation on short notice which leaves little time for them to be mentally prepared for it,” he added. He said that this has a lingering effect on them post amputation and in no time it becomes a full-blown depression situation.
The hospital performed amputation and suggested physiotherapy and that was the end of the road for Venkatesh. His family wasn’t aware of a technology called prosthetic limb. The doctors had only suggested crutches.
Life spiraled out of control for Venkatesh shortly after amputation. He remembers being called a sissy for crying too much. He said he could still bear the pain of a severed leg, but people calling him names like viklang and a handicap left him traumatized. Venkatesh recalls one such incident when he decided to start cycling again a couple of months after amputation. “I was struggling to peddle and I had just got it right when a man cycled past me and asked me to be careful, for I might lose my other leg too. That broke me,” said Venkatesh.
A report by the National Library of Medicine suggests the direct relation between an amputee’s psychology and amputation. It confirms that psychological therapy yields better results and a significant change in their personality with respect to depression and anxiety that amputees face post-amputation.
Dr. Danish said that amputees possess the symptoms of post-traumatic stress disorder (PTSD) for which therapeutic intervention is required. He said that the biggest question that any amputee has been ‘why me?’ and that is exactly when group counseling works the best. He added that the amputees feel less lonely when they meet others who have a history similar to theirs.
“We use cognitive behavior therapy (CBT) which helps in building a stronger coping mechanism that in turn helps fight depression. Using therapies like these we try to help amputees build positivity around their body,” said Dr. Danish.
Sushilamma was diagnosed with cancer in 2001 and underwent chemotherapy. Cancer couldn’t kill her, she was steel-headed. Two years ago while watering plants in her garden, an iron rod fell on her leg that formed lumps around her ankle. A local hospital referred her to Kidwai Hospital where the doctors decided to perform surgery to extract the lumps. It looked better for a couple of days, but the ankle swelled post and the doctors declared that amputation was necessary. The doctors didn’t suggest anything about the prosthetics, but her son, who is a doctor, knew what her options were. Sushilamma says it is unreal that the doctors believe that amputation is the final stop for amputees. She said that it feels surreal thinking about how there is zero responsibility in Indian medical science to provide long-term solutions to amputees which must include innovation and designing authentic prosthetic limbs. “You can’t help but wonder what it is that they make in ALIMCO. I have heard they make prosthetic limbs that look like a joke,” said Sushilamma. She has changed a number of prosthetics to date and found comfort in none. “They do have ones from Ottobock that are good, but they are expensive. There is nothing that we get assistance from the government,” she added.
Artificial limb and manufacturing corporation of India (ALIMCO) is a government undertaking that manufactures assistive devices for persons with disabilities.
Sumit Tiwari, public relations officer at ALIMCO, said that they manufacture prosthetic limbs under the range of Rs. 22,000. “ALIMCO has recently collaborated with Ottobock for more innovative prosthetic limbs that are better in quality and comfortable to use,” he said. “However, we aren’t sure how many amputees have benefitted from it.”
“They visit us with a hope to get the best possible solution for their amputated limb”, said Sanjay from Mobility India. He added that one of the biggest challenges for them at Mobility India is to make the amputees feel one with the prosthetic component. “The whole idea is to pull them out of that discomfort and delete that pokey feeling at the back of their head that they are wearing a component,” he said.
Sanjay said that they have a holistic approach to building and designing products for amputees. “We involve doctors and the families of the amputees to discuss and bring out the best possible product that we can,” said Sanjay.
Sanjay said that Mobility India follows a 60-40 percent idea where 60 percent of the price of the product is paid by them and remaining 40 percent by amputees. We would love to go more technology-extensive and provide better, cheaper rates, but finding interested investors is a monstrous task. He said that funding is fringing day by day in Bangalore.
Venkatesh said that it is difficult to get good-quality prosthetics, especially for people below the poverty line. “People below the poverty line don’t have many benefits to reap from the BPL card when it comes to prosthetics. You might get basic components from NGOs, but the ones with better quality and innovation are far from their reach,” said Venkatesh. He mentioned that the government overlooks what should actually be looked into, the real problem.
The limb must be changed every 1-3 years and a follow-up every three months is mandatory. There is a famous saying that if there is no follow-up, there is no support. Follow-up includes physiotherapy which in return helps measure their gait.
The problem with the users is that most of them stop taking physiotherapy sessions shortly after amputation. Only a smaller percentage of amputees actually turn up for their sessions. “It is vital for the amputee to remain engaged in physiotherapy. I can’t stress enough about how important it is for their muscles and mental health,” said Sanjay.
Dr. Arun, a physiotherapist from Kidwai hospital said that improper physiotherapy or incomplete sessions might lead to complications in the amputated area. “Complete physiotherapy helps in preventing complications that further help in finding the best prosthetic component that fits well,” Dr. Arun explained. In 14 years of his service as a physiotherapist, Dr. Arun has witnessed that most of the amputees come from poor socio-economic backgrounds. He mentioned that bone tumors are the second most common reason behind amputation, after trauma-related injuries. “I have witnessed that people that receive an amputation due to bone tumors are more likely to be from poor households. Due to lack of proper diet and malnutrition, these people end up developing conditions like these that further into amputation,” he explained.
A report on amputees in India by Digital Resource Foundation for the Orthotics and Prosthetics community mentioned that most of the amputees come from rural parts of India. Amputees from rural parts usually come from poor socio-economic backgrounds. Amputation worsens their living conditions as they struggle to get jobs and are ousted by their communities.
Tamil Nadu and Andhra Pradesh have separate schemes in place for prosthetics and orthotics while Karnataka lags behind. The Tamil Nadu government provides Chief Minister’s Comprehensive Health Insurance Scheme (CMCHIS) and Andhra Pradesh provides a scheme under the Differently abled and Senior Citizens Assistance Corporation (APDASCAC) for the supply of artificial limbs, calipers, and other prosthetic aids to the amputees. There is no government intervention asking government hospitals to ramp up their orthotics and prosthetics services in Karnataka. Government hospitals, aid the NGOs and deem to do their part.
A cross-sectional study conducted on Quality of Life (QOL) suggests lower QOL of prosthetics users in South India. Lower limb amputation negatively impacts their employment prospects as compared to upper limb amputees. Community-based rehabilitation programs by Non-governmental organizations (NGOs) have proved to be effective in improving amputee lifestyle and their inclusion in society. There are no such rehabilitation programs provided by the government hospitals.