Vinod Chauhan fell from a mango tree at the age of 14 years and sustained a spinal cord injury (SCI), paralysing his lower limbs permanently. Today at 22, he is unemployed and only sits at home in a depressed state of mind. His brother is a daily wage labourer and the only earning member. Vinod does not even possess a phone, which leaves him disconnected from the outside world.
Sarjerao Zakhane was a construction worker at a pipeline site in Nashik. While returning home from Nashik he met with an accident and damaged his spinal cord, which left him paralysed from the waist down. He does not even have a cot or a mattress and has developed bedsores – a life-threatening secondary complication.
Tanmay Galgatte is only seven years old and became a paraplegic along with his mother Ashwini due to a road accident. He does not even have callipers and crutches since the accident. A young bright boy, with his dreams and aspirations prematurely snuffed out.
These survivors, as also millions of others in rural India, share a similar fate. They were discharged with no post hospitalisation plan of action. World-class rehabilitation in the developed world is far beyond their means, which raises some basic humanitarian queries: Don’t they have the right to quality rehabilitation? Don’t they deserve to enjoy every aspect of life and live with dignity? Doesn’t the society have a responsibility towards survivors of spinal cord injury?
Jalna district, home to Vinod, Sarjerao, Tanmay and Ashwini, is situated in central Maharashtra, in the Marathwada region or the Aurangabad division, and is bounded on the north by Jalgaon district, on the east by Parbhani and Buldhana districts, on the south by Beed district and on the west by Aurangabad district.
Most of the survivors of spinal cord injury live in extremely poor conditions, in ramshackle houses where they do not have access to beds, mattresses, western toilets and wheelchairs. Many have squandered their life’s savings in search of a cure, which is non-existent worldwide, and are now running from pillar to post in search of alternative solutions. There is a huge gap in the demand and rehabilitation services provided in the rural areas of Maharashtra.
Nina Foundation, an NGO in Mumbai has been providing world class peer mentoring, counselling, most appropriate assistive technology, education and medical guidance to scores of underprivileged friends with spinal cord injury through their OPD (in Mumbai) and holistic camps in both urban and rural areas.
An SCI rehabilitation camp at held recently at Jalna by Nina Foundation included a professional and experienced team of peer mentors, physiotherapists, an orthopaedic surgeon and a skin specialist. Eighteen survivors of spinal cord injury attended this one-day medical camp. Most did not possess appropriate wheelchairs and cushions. Nina foundation planned accordingly and distributed wheelchairs and cushions where necessary. For SCI survivors, wheelchairs and cushions are akin to our legs and shoes. In rural India, even this is conspicuous by its absence.
The camp began with a motivational video that sent the message to all present that anything is possible and nothing is beyond reach. That set the tone of optimism and endless possibilities. The attendees with SCI first consulted with the orthopaedic surgeon, after which physiotherapy sessions were conducted with them individually to assess the muscle strength, range of motion and tightness. Most rural SCIs DO NOT have access to physiotherapy, which is the most important requirement to lead a life of a reasonably good quality. We need physio marshals trained in all aspects of SCI to traverse our rural interiors and conduct sessions daily. While the physiotherapy sessions were being conducted, the friends with SCI interacted and networked with the peer mentors who gathered information about the SCI survivors and listened attentively as they shared information about how they sustained a spinal cord injury and coped thereafter. The Activities of Daily Living (ADL) session was conducted by the peer mentors thereafter. Ideally an occupation therapist teaches and guides survivors after the traumatic SCI. Sadly, in most parts of India, this is woefully lacking.
ADL skills promote an independent lifestyle as it involves learning the different techniques of performing daily activities without the assistance of a family member or a care giver. It includes activities like bathing, wearing clothes and shoes, grooming, travelling, cooking, eating and cleaning. The team also displayed a variety of independent transfer techniques from wheelchair to wheelchair, floor, bed, chair, commode and vehicles.
ADL skills relieve not only the survivors of SCI but also their family members of the added post injury responsibilities. The 18 participants were overwhelmed by the love, genuine interest and high quality care shown by the Nina Foundation team. For all of them it was a life changing experience as they were made aware of possibilities that until now they had given up on.
In rural areas, the wheelchair carries with it a stigma that is difficult to overcome. For most it is a sign of weakness, dependence and inferior status. The peer mentors of Nina Foundation worked hard to show that there are benefits of being an active wheelchair user. Advance wheelchair skills were demonstrated in the hope that they will change their perspective on the subject and look upon a wheelchair as a travelling aid like a car, bike or cycle. The primary aim is to dispel the problem of impaired mobility and cease to worry about social stigma.
SCI can result from traumatic or non-traumatic causes, as follows:
Traumatic Causes
1. Fall from height: trees, construction sites.
2. Road Traffic Accident (RTA); especially involving two wheelers.
3. Sporting injuries: diving, kabaddi, wrestling.
4. Assault: Gunshot injury, stab.
Non-traumatic Causes: Tuberculosis (TB) or Tumour.
SCI is a very costly disability. The expenses incurred can be divided into direct and indirect costs. Direct costs involve the actual management of the injury in the acute phase and subsequent follow up visits. The bulk of this occurs in the first year after injury wherein hospitalisation expenses account for the major chunk. Costs also depend upon the level of injury: the higher the level, the longer the hospitalisation, and the greater the cost. Indirect costs involve loss of future wages and productivity. The younger the age of injury, the higher are the indirect costs.
A great majority of persons with disabilities live in rural areas. Unfortunately there is no information available on the prevalence of spinal cord injured individuals or its incidence. However, with a burgeoning population, rapid ungoverned urbanisation and industrialisation, the number of victims of this severe disability without any cure can be assumed to be rising too.
The WHO Global Burden of Disease Study predicts that trauma by road traffic injury will become the third ranked most disabling condition by 2020. And it has declared SCI as the most devastating disability on the planet! The understanding of SCI and the infrastructure for its management can best be described as almost non-existent. The first contact point for the spinal injured person most likely would be the Primary Health Centre. There are no special units or beds allotted to spinal injury even at district level centres. Most of the states do not have any paraplegic unit in the general or speciality hospitals run by the government. A spinal injured patient would most likely be admitted to a general hospital in the orthopaedic or neurosurgery department, probably operated upon the spinal column and sent home after 14 to 21 days. Prevention of secondary complications requires coordinated and dedicated efforts of almost everyone caring for such an individual and this cannot be expected in a busy set up where every resource, human and institutional, is already overburdened.
Cushions help to prevent bed sores, a serious life threatening secondary complication that results due to prolonged pressure on soft tissues between bone and the hard external surface (bed). This leads to reduced blood flow to skin and tissue breakdown. Wet sheets due to urine or faeces macerate the skin softening it further. Shear between the sheet and skin during shifting or transfer too can cause skin ulceration. Pressure sore is a source of infection and septicaemia. An open wound has dead tissue and leads to loss of blood and protein. This necessitates surgery to clean the wound and close it.
Nina Foundation has been relentlessly and actively supporting survivors of SCI for 17 years and has advocated for the need of a world class rehabilitation centre in Maharashtra along the lines of the Indian Spinal Injury Centre (ISIC), New Delhi. The focus is now to proactively provide rehabilitation services in the metropolitan areas like Mumbai and Pune to those who do not have access to the same services. The medical camp at Jalna is the 3rd successful camp after Mumbai and Sultanpur. The team will carry forward the lessons learned to deliver exceptional rehabilitation services with more such medical camps in Maharashtra and other rural places in future.
(Nina Foundation looks forward to companies and volunteers to participate in their cause of SCI rehabilitation.)
