India ranks second in the number of spinal cord injury patients with over 20,000 fresh cases every year. Yet, there are only 28 rehabilitation centres with just 900 beds across the country.
A frail, malnourished, bony Gulab Pawar with a smile on his face and stooped posture arrived at Nina Foundation (An NGO for rehabilitation of friends with Spinal Cord Injury) on 5 March 2014. The location was Community Hall, which doubles up as a Balwadi, dance class and clinics belonging to AIWC (Santacruz East) branch, near VN Desai Hospital. Pawar’s wife and daughter both tired after a three-hour road journey from Kashimira, near Bhayander, were dejected when the sole earning member of their family fell from a tree from about 10 feet high. Gulab Pawar is a tribal from Varsova village in Thane district. Volunteers from the Swadhyay Parivar met Pawar during their visits to the village and contacted Nina Foundation. Pawar had fractured his spine at D10-11 level, which resulted in paraplegia. He was completely bed-ridden and dependent on his family (wife and three school-going kids). He was also depressed. He had not seen any medical doctor or therapist since his spine surgery and did not have any clue about bladder care, exercises and sores. An efficient medical team created by Nina Foundation assessed, counselled, guided and treated him - all under one roof at one time. The team comprised of a spine surgeon, urologist, physiotherapist, homeopath, social worker and peer counsellor. During his assessment, Pawar barely spoke. The senior physiotherapist advised use of callipers and walker to help him stand and also taught him exercises to do every day to strengthen his muscles. After a few weeks, the senior physiotherapist Dr Dhruv Mehta and the orthotist visited him for follow-up and fitting of the callipers. Nina Foundation also arranged for parallel bars on rent for Pawar at his home to help him regain mobility, strength, balance and range of motion.
Smita Varikh came to the OPD in July 2014. A little more than a year before that, she was a resident of a village in Ratnagiri district. While drawing water from the well outside her house, a tree fell on her, fracturing her spine at the neck. A fortnight after this incident she was brought to KEM Hospital, where a surgery was done to stabilise her neck and spine. The accident left her bedridden and paralysed neck-down (quadriplegic). After the surgery, the family relocated to Nallasopara. At the OPD, complete assessment, counselling and examination showed that she needed further hospital care. So, Nina Foundation got her admitted in the nearby VN Desai Hospital under Dr SY Bhojraj (also a trustee of Nina Foundation) for a complete evaluation.
A spinal cord injury patient would have spent over Rs20,000 as consultations only, plus almost a month for appointments, cost of travel, foregoing a day’s salary by the family member plus all the effort. At the Nina Foundation OPD, they are assessed by the entire team under one roof in a single visit.
For the past fifteen years, Nina Foundation has worked relentlessly to spread hope and optimism amongst the spinal cord injured. Nina Foundation’s ethos is to 'give the Best to the poorest' - be it highly expensive and qualified doctors, counselling or treatment! Its latest innovation is a free non-residential once-a-week outpatient department (OPD), which was launched on 5 March 2014. The Santacruz East branch of All India Women’s Conference (AIWC) very magnanimously offered their community hall to conduct the OPD. Through this venture, Nina Foundation’s ace multi-disciplinary team assess, counsel and treat friends with spinal injury – all under one roof, in a single visit. They also help with diagnostics, transport, assistive technology, home modifications and home physiotherapy.
Nina Foundation’s vision of giving hope to our friends with spinal cord injury is achieved at the OPD through personal one-to-one attention and time investment by top class doctors. The team of experts at the OPD also includes Peer Counsellors – friends with spinal cord injury, who have struggled and learnt how to face life at home, at workplace and in society. They interact with the patient and offer solutions, which are doable and unique thus improving their quality of life! However, the edge and the key difference at this OPD is homoeopathy consulting.
Many patients coming to the OPD are from an economically challenged background. Some of them have not seen a doctor for years due to financial and accessibility issues. The family members / care-givers tend to overprotect the patient. They are also at the receiving end of the anger and frustrations of the patient and need guidance and counselling.
Why Spinal Cord Injury OPD in Mumbai?
The World Health Organization (WHO) has declared spinal cord injury as the most devastating injury in the world (2012). According to International Statistics, India stands second with the number of Spinal cord injury patients. The total number of spinal cord injury patients is about 1.5 million. Fresh cases every year are almost over 20,000. There are only 28 Rehabilitation Centres in the entire country with a provision of 900 beds only. In India there are only two world-class rehabilitation centres-Indian Spinal Injuries Centre (ISIC), New Delhi and Christian Medical College (CMC), Vellore.
The main cause for Spinal cord injury may be an accident, fall from height, bullet injury, adventure sports like paragliding, scuba diving, rock climbing, and river rafting. Other reasons may be diseases like tuberculosis or tumour in the spine and others. The spine affects functioning of the entire body. In Spinal cord injury, generally the patient loses control over body movement and, most likely, has medical complications such as chronic pain, bladder and bowel dysfunction and increased susceptibility to respiratory and heart problems. They become Quadriplegic (paralysis neck down) or Paraplegic (paralysis waist down). This significantly changes every aspect of life.
Mumbai is still awaiting a world class Rehabilitation centre, which should have all the facilities for diagnosis of Spinal Cord Injury. It comprises of diagnostic facility of all tests under one roof, pathology, uro-dynamics, physiotherapists, recreation space and more.
Nina Foundation had exhibited a scientific poster about the weekly OPD at the Annual Conference of Association of Spine Surgeons of India (ASSICON) in 2014.
The free OPD offers:-
1) Hope Kit – It contains essential items for a better quality of life like macintosh, urine bag, Lox 2% gel, Dettol soap, cotton swab, cotton roll, paper soap, coconut oil, bournvita satchet, small mirror and Romson catheter.
2) Frequently Asked Questions (FAQs) in 3 languages: Hindi, Marathi and English. FAQ’s covers answers to all the common questions, which a friend with spinal cord injury would hesitate to ask.
3) Assistive Technology-
Appropriate Wheelchairs, Callipers, Catheters, Medicines and home modification.
4) Homeopathy medicines couriered periodically.
5) Free transportation is arranged for some patients, who cannot afford to travel to and fro the OPD.
6) Nina Foundation has a specially fabricated ramp at the OPD for a dignified entry and exit without any hassles.
Nina Foundation served its 100th Friend with Spinal Cord Injury in the OPD on 2 September 2015. Alka Nigam who came from Badlapur with her elderly mother was helped with travelling cost and all the assessment and counselling. Her chief complaints were bed sores, Urinary Tract Infection and piles.
Nina Foundation urges hospitals, spine/orthopaedic and neuro surgeons, physiotherapists, urologists to connect their old and acute patients to the Nina Foundation OPD such that they can also get superior rehabilitation guidance to lead a better quality of life.
(Dr Ketna L Mehta is an educationist, editor, author and Founder Trustee of Nina Foundation that works for the rehabilitation of economically and socially disadvantaged people with spinal injuries. Her PhD Thesis was “Market Potential Study for a World Class Spinal Cord Injury Rehabilitation Centre in Mumbai”. She is also Editor and Associate Dean Research, WeSchool. Ms Anupama Ganesh is Trustee of Nina Foundation. She launched the free Spinal Cord Injury OPD in 2014. Email- [email protected]. www.ninafoundation.org)