SCI can be divided into two broad categories etiologically: traumatic injury and non traumatic injury.
Traumatic injuries are by far the most frequent cause of injury in the adult population and are caused by road traffic accidents (RTA), falls or gunshot wound, domestic and work-related accidents, sports injuries, self-harm, assault or complications following surgery, e.g., corrective surgery for spinal deformity, like scoliosis.
Non traumatic SCI
Non traumatic injury in the adult population results from disease or pathological influence. Factors that influence life expectancy are age at injury, level, and extent of neurological injury. Infection of the spinal nerve cells (bacterial and viral), cysts or tumours pressing on the spinal cord, interruption of the blood supply to the spinal cord (causing cord damage), congenital medical conditions that affect the structure of the spinal column, e.g., spina bifida.
WHAT DOES THIS REHAB PROCESS INVOLVE?
A highly qualified team of specialist doctors, therapists, caregivers and, most of all, the cooperation of family members.
A continuous process of education to do the right rehabilitation for that specific case as no two cases are alike.
Ensuring the active participation of the patient in the entire process.
THE FIRST STEP
Acceptance of the new condition with intensive and regular physiotherapy for muscle tone-up, to avoid muscle wasting, spasms, conjectures, etc. In addition, training on living with the mobility aids like calipers, crutches, walkers, etc.
Occupation therapy such as transfer from wheelchair to bed, toilet seat, etc. Helping oneself to work in different types of environment becoming adept in handling appliances like computers, writing instruments, etc.
Self catheterisation: getting used to urinary tract infection (and learning to avoid those), intake of adequate fluids, wholesome diet filled with fibre for proper bowel movement, maintaining regular time for meals.
Maintenance of hygiene, managing activities like self driving, learning new skills for a job, recreation, going in for regular checkups to avoid complications, knowing one's legal rights and concessions available as people with disabilities.
Most often, people come home after surgeries without actually going through the processes mentioned above and therefore are likely to bounce backward.
There are only two centres in India which have facilities on par with world class standards: ISIC, (Indian Spinal Injury Centre) in New Delhi established by Maj HPS Ahluwalia and the facilities at CMC, Vellore established by Dr.Mary Verghese. It is a deplorable fact that the rehab centres in India and the growing numbers of SCIs are not in proportion. In total there are today, 28 centres with 900 beds.
The health care segment is a Rs 1500 million industry and India spends only 5% of the GDP for health in comparison with 15% GDP spend in USA. There is an imperative need to scale up the rehab centres to world class standards more so, with the increasing number of cases in our country.
LEVELS OF REHABILITATION
Education and Counselling by a physiotherapist
A person with spinal cord injury requires extensive physiotherapy to gain strength, lost muscle tone and to become largely functional again. During the treatment a physiotherapist plays a vital role in bringing about a positive approach towards the treatment. A caring touch, constant reassurance and reaffirming from the physiotherapist can work wonders in developing a positive approach as well as looking at the brighter side of life. The nature of treatment is explained to the patient, and it is important to have patient compliance and stress on the importance of regular exercise.
TEAM WORK CYCLE
The condition and the likely outcome are informed to the patient. A team approach which includes the physiotherapist, the occupational therapist, the social worker and patient as well, is necessary to promote not only physical independence but also economical independence and social acceptance. The relatives and person with spinal injury are as much a part of the team as
THE FIRST STEP
the professionals and must be consulted at all times, because eventually, it is they who will have to share the responsibility for the successful attempts towards an independent life. In the case of the most severely disabled persons the relatives may be able to undertake nursing care at home with suitable instructions and with the necessary equipment.
A physiotherapist must know the patient's strengths and weaknesses as well as mental and emotional stability. He must accordingly plan up a treatment program. No false hopes should not be given to the patient. Instead, all the possibilities and outcome should be discussed and explained.
The aim of physiotherapy will differ in relation to the level of the spinal cord injury. Physiotherapy can help reach and maintain maximum physical potential and help in the management of other aspects of the condition.
Having a spinal cord injury is a life changing event for both the patients and their loved ones. The aim of the entire team should be to make the treatment sessions effective and enjoyable. All you need to explain to the patients is that they need to give it a try, work up ways and means, ask for help whenever required and not to lose hope and calm; all they need to have in their mind is that they need to reach their goal. There is just a need to stimulate that all-important urge to live and reignite the fire for setting goals and achieving these in a manner possible.
Life can be made simpler and viewed with renewed interest, if a spinal cord injury patient is made to, DREAM, IMAGINE, BECOME and ACHIEVE. What we face in our life is never in our hands,
But how we deal with it is in our control.
The author is founder trustee of Nina Foundation
SPINAL INJURY IN INDIA
HARVINDER SINGH CHHABRA
To give millions of people world-over all the hope and courage, two men revolutionised the way the world saw the section of spinal cord injured persons during the Second World War. Sir Ludwig Guttman and Sir George Bedbrook tirelessly demonstrated and argued that with proper management, patients with spinal injuries could lead near normal lives. The attitudinal shift lead to the launch and gradual growth of spinal injury centres in many developed countries.
In the last two decades in India, and many other developing countries, have witnessed watershed moments in the disability sector, particularly in the area of spinal cord injuries. These included setting up of dedicated spinal injury centres that focus attention on spinal injury management.
Numbers are tough to gauge, but in India, numerous pilot studies have estimated that incidence of spinal cord injuries is roughly 20 per million population. In developed nations, it is anywhere between 20 and 50 per million population. The causes are aplenty but the top two can be dubbed as road traffic accidents and the injuries caused while falling from heights.
According to a study I conducted, the demographics of spinal injuries in India differ significantly from those of other countries. There is a lower mean age and percentage of geriatric population. There is a much larger number of males, paraplegics, those with complete injuries, those married at the time of injury and those suffering injuries due to road accidents involving two wheelers and falls.
Management at Site and Transfer to Centre
Emergency medical care is very important in the management of spinal cord injuries (SCI). At the site of accident the spinal injured should be extricated with first aid treatment given by trained personnel. Evacuation to the nearest major accident and emergency centre should be done by trained personnel using an appropriate mode of transport (road, helicopter or aircraft). After the patient is stabilized, he/she should be shifted to a definitive centre specializing in the management of spinal cord injury.
Pre hospital management has not been given due emphasis in India. Although there has been some effort by the government and NGOs to set up these services in some cities through Centralised Accident and Trauma Services and
Highway Road Traffic Patrol, there is still a lot more still needs to be done.
Acute management involves management in the emergency room, comprehensive evaluation, surgical or conservative management and management of complications.
Patients with SCI managed conservatively, need to be in bed for a specified duration during which time, they require meticulous care.
Proper statistics are not available but experts generally feel that improperly managed neurogenic bladder is still one of the most common causes of morbidity and mortality in spinal injured in India. The high expenses involved with use of disposable catheters for clean intermittent catheterisation may be partly responsible for this. However, it has been clearly demonstrated that even though disposable catheters are desirable, reusable catheters, cleaned with soap and running water and stored in a clean cotton bag, are also a suitable, affordable and practical option. Thus the issue may not be just the costs involved, but mainly the awareness amongst the patients and the professionals.
The major goal of rehabilitation is to make the individual as independent as possible in his/her activities of daily living and to get him/her back to a near normal life style. This requires specially trained staff and team effort. The rehabilitation team includes the spinal injury consultant, nurse, physiotherapist, occupational therapist, orthotist, psychologist, peer counselor, social worker, and vocational counsellor.
Rehabilitation should be done according to the environment to which the patient has to return. For example, if the patient has to go back to a village and is rehabilitated according to an urban setting, the program is bound to fail. The rehabilitation team should plan the goals in consultation with the patient and the family and regularly monitor the achievement of goals.
Wheelchair clinic, use of assistive technology and educational classes for patients and care givers are all important components of rehabilitation as are sexual counselling, fertility clinics, peer counselling, psychosocial counselling and sports and recreational therapy.
However, in India, very often the patients are provided acute management and are then sent back home without the comprehensive rehabilitation that is so vital for the management of the patient. Sexual rehabilitation is a very important but neglected field, especially in India, where talking about sex is thought to be a taboo. Up to 50% – 60% success rate is possible in the field of fertility for spinal cord injured but services in this field are not well developed in India.
Spinal cord injury has major consequences psychosocially not only for the patient, but also for the whole family. Hence psychosocial counselling by psychologists, social workers and peer counsellors is important for the patient as well as the whole family.
Such services are not well developed in India. Even otherwise people shirk from consulting a psychologist since this is considered a stigma in a large section of the Indian society. However, strong family support and religious beliefs can lessen incidence of psychosocial problems in the Indian spinal cord injured population.
Unless the rehabilitation process involves making the individual an economically productive member of society through vocational counselling and training, the job is incomplete. This assumes importance, especially since most of the spinal injured are the sole or important bread earners for the family and are not able to go back to the same vocation after injury.
The joint family system can reduce the stress on the patient with regard to return to a vocation. This is especially prevalent in the rural areas of India where the majority of the population lives. The strong family support often helps the spinal injured to return to the vocation which is common to the whole family.
Home Modifications and Reintegration into the Community
A pre-discharge home visit is important in order to suggest home modifications. Follow-up home care services help to detect complications, if any, which will facilitate the person to return to a normal life style and reintegrate into the community.
These services are poorly developed in India. Further barriers in the environment prevent the spinal injured from moving around freely both in the community and at the work place. There has been an endeavour by the Government to provide a barrier- free environment, but we still need to go a very long way in this, especially considering our predominantly rural population.
A lifelong regular yearly follow-up is mandatory. Follow-ups can help to detect and prevent complications. In developed countries there has been a dramatic reduction in mortality due to decreased urinary tract complications. Instead now pneumonia, non-ischaemic heart disease and septicemia are the leading causes of death.
In developing countries however, mortality is still mainly due to urinary complications. Follow-ups by the patients are poor due to financial and other constraints.
The dictum “Prevention is better than cure” is very relevant in spinal cord injuries and a very strong focus should be given on it. This could be done by public awareness programs and implementing legislation which can help prevent accidents in various sectors such as transport, agriculture, industry and sports.
Strategies for prevention have to be different in developing countries like India due to differences in prioritisation, epidemiological differences, differences in population distribution (urban vs. rural), differences in available resources and differences in mindset of the population.
Stem Cell Therapy
Though pre-clinical trials have shown a good potential for cellular therapies in spinal cord injury there is no documentary proof as of now, that any form of cellular therapy definitely improves outcome in management of human spinal cord injury. There is a need to conduct proper clinical trials. However some experimental therapies have been introduced into clinical practice without a clinical trial being completed. It is unfortunate that this is also prevalent across India. Moreover undue hype by the media and claims by professionals have a profound psychological effect on the spinal cord injured and interferes with their rehabilitation.
In India problems like financial constraints, patients not reaching definitive institution, late
presentation by patient and paucity of trained manpower are the most common factors that hinder management. In addition, lack of adequate facilities at the definitive institution, the psychological factors, illiteracy and inadequate patient education are the other factors that hinder their management during hospitalisation. Inadequate rehabilitation, a barrier-ridden environment, difficulty in availing of the assistance offered by government/other agencies, inadequate community awareness, financial barriers, lack of availability of assistive technology and irrational beliefs are factors hindering integration into mainstream society. Strong family support, religious beliefs, community support and support from spouse are the positive factors in Indian Society.
The last two decades have seen a renewed interest in India to improve services for spinal injured. Most aspects of management are being looked into and there is a growing government – NGO cooperation in this regard. With these developments, things are soon bound to change for the better.
In a Nutshell
Spinal injury management is probably the most challenging and expensive as compared to that of any other ailment. It requires multi disciplinary team management.
Prevention, first aid at site, evacuation from accident site, ventilatory management, adequate rehabilitation, fertility, vocational training, pre-discharge home visit for modification, follow up home care service, follow up in hospital, integration into community and barrier free environment are the neglected areas of spinal cord injury management in India. The long list of neglected areas suggests that the ailment is still given a low priority.
However the scenario is likely to change in the coming years with a growing interest in the medical and paramedical professionals, service providers, policy makers and community in general.
The author is Chief of Spine Service and Medical Director, Indian Spinal Injuries Centre, New Delhi.
The 4 E’S of SCIprevention
Education: Educating the laymen about the possibility of SCI from the various acts they indulge in.
Enforcement: These strategies identify opportunities for injury prevention that can be legislated for the protection of all the citizens. Examples include seat belt or car seat laws, stop lights at the dangerous intersections or railroad crossing gates.
Engineering: It is an effective way to reduce the impact of energy transmission across the host by design. For instance, better head protection from better-designed helmets limits the effect of the injury.
Economic Incentives: When purchase costs act as a barrier and when voluntary participation is necessary to achieve compliance, economic incentives can serve to provide access to prevention devices, such child restraint seats.
DR. HIMANSHU DOSHI
PREMIER REHABILITATION CENTRES
CHRISTIAN MEDICAL COLLEGE(CMC), Vellore
S. VAIDHYA NATHAN
When Raghu Naidu stepped into his fields to till the land, there was much amazement and some amusement. He was no ordinary farmer. Wearing full-length calipers, he used his crutches adroitly to manoeuver in the slushy and loose sand and plough his fields. This was not a one-off. He had been at it for more than 25 years.
Naidu's exemplary life as a farmer despite a spinal cord injury rested firmly at the Mary Verghese Institute of Rehabilitation (popularly know as just Rehab in the Bagayam campus of Christian Medical College, Vellore). Therapists, doctors and social workers had visited his village, understood his requirements and then proceeded to train him to be able to take care of his lands.
Nestling in a verdant setting, India's first rehabilitation centre for spinal cord injury can be easily mistaken for a resort. Once you step in, the life-changing work done here by the team on a 24x7, 365 days basis, dawns on you in a no-frills setting. Service fills the air and it is always service with a smile, be it doctors, nurses, therapists, social workers, assistive devices staff or the support crew.
Underpinning the service is the unconditional acceptance. Dr. Suranjan Bhattacharjee, a specialist in Physical Medicine and Rehabilitation (PMR) and now Director of CMC, Vellore, explains the concept: “There has to be an unconditional acceptance of whoever comes for healing. We must treat each person who comes for healing as an embodiment of the divine. We must be human about mistakes that may happen. We must bring sensitivity back, as, when a society becomes insensitive to its own pain, it starts to feed on itself.”
Nothing exemplifies this more than a touching example from 1990. The old guard at Rehab recalls fondly how Dr. Bhattacharjee restored a dog that had been picked up from a gutter outside the campus, that had suffered a spinal cord injury and ensured that it lived comfortably. Unconditional acceptance means it matters not, to this day, even if a person does not have the monetary resources to support his/her programme at Rehab.
It was here that Raghu Naidu picked up the pieces of his life in the mid-eighties. As did Bharathrajan, a former athlete, who went through a protracted phase of depression. His occupational therapist, Shobha, spent long years chatting with him and slowly drawing him out of his predicament. In this endeavour, she was going beyond the call of her duty; a fairly routine occurrence at Rehab over the years.
Bharathrajan today works in the police department and has two children. His daughter sports the name of his occupational therapist in a gesture of love and gratitude. Several thousand have passed through the portals of Rehab and the PMR since the basic steps set by Dr. Sarvapalli Radhakrishnan, the then President of India, in 1963. A visionary, Dr. Mary Verghese was the bedrock for these path-breaking initiatives, from her wheelchair.
Using a completely need-based approach with the patient at the forefront, meant that Rehab was emerging as a different setting right from its early years. A comprehensive approach means that patients get quality care for a variety of issues under one roof – an important part in rehabilitation of a spinal cord injured person, given the constraints in mobility and the multiple physical challenges.
When Manoj, aged six, arrived at Rehab in August 2010, his smile grabbed attention, as Team Rehab set out to map his rehabilitation and likely outcome. A holistic approach that takes care of the physical (strength, mobility and activities of daily living), psychological, social and economic aspects is central to the care offered here.
Given his high level of injury, the initial thinking was that Manoj might not be able to walk again. The team decided to keep the approach flexible and observe how he evolved as the rehabilitation proceeded. Manoj picked up the bits with gusto with his physiotherapist and occupational therapist. He was soon walking using a walker. Given his age, it was no surprise that the wheelchair was almost a plaything for him, as he taught tricks to his older peers at Rehab.
Manoj's family came from an economically disadvantaged background. So at every stage, this aspect was taken in cognisance with the team of social workers who were the anchors for his rehabilitation program. Today, Manoj is in school with the support of community-based groups. His rehabilitation was not just about him, but his dad, too, as his uplift is critical to Manoj's future. Here too CBR and bank support have acted as a boost.
Dr. George Tharion, Head of the PMR Department in CMC Vellore, stresses the teamwork ethic:
“A key factor to how Rehab has evolved is the team. Rehab is about a group of people with varied skills working together for a common cause. In Rehab, everybody is willing to run the extra mile to work as a team. Collective wisdom and interaction has strengthened what we do. As you work collectively, it means astronomical strength. Strength does not add but grows in geometric proportion when people work together.”
According to Dr. Tharion, the teamwork assumes greater importance as Rehab requires a flexible approach. “It is not a place where you can go and put protocols. The same problem may have to be managed differently and tailored to suit the needs of different people.”
To be in Rehab is to be in a mini-India, cutting a swathe through religion, caste, language and differences in educational, work, social and economic backgrounds. They are all left behind, as families and friends rally in a manner that inspires confidence in the support system for persons undergoing rehabilitation. You get a good idea of what makes India tick. The beautiful chapel inside Rehab is practically a multi-religion pray spot.
Many like Manoj, who come from economically disadvantaged backgrounds, get free treatment and/or support from sources identified by the social workers. There is a simplicity about the place that may lull you into a view that outcomes may not be significant. But that is as far as you can go from the truth.
Even as Rehab has widened its ambit of work to care for persons with brain injury, stroke victims and children with special needs, this simplicity has been retained in it entirety. Quality rehabilitation is about touch, smile, understanding and interaction, which you get in abundance, and less about fancy, expensive devices. This has been a key factor in ensuring Rehab's services are within reach for one and all.
Dr. Tharion emphasises that keeping costs down is a constant task. “Even when we expanded, we found that the cost has to be low to improve reach. The dream was also, that we are able to provide the best care at the lowest possible cost. It is always a challenge to get relevant, not necessarily high-end technology, at the lowest cost. Money can buy many things, but does not mean reach. Our facility had to be accessible and available.”
There are many lessons to be learnt just by observing what is happening to others around at Rehab. You will find somebody lying in a split mattress or prone in a trolley for many months due to bedsores. You will see how constrained and time-consuming the process is for them. You know that avoiding bedsores is the cornerstone of your life, as only then can you sit, stand, walk, work and be active in the community.
Suddenly the importance of all the precautionary steps that the nurses and therapists have been telling you becomes all too clear. There is a constant learning process for other issues that persons with spinal cord injury face, especially in the areas of bladder and bowel management. Constantly broken Tamil, Hindi, Bengali, and English are deployed to augment the learning process.
In the midst of growth and change, the ethos set by Dr Mary Verghese has been nurtured carefully, as that is what makes Rehab flow smoothly amidst acute day-to-day challenges.
Looking ahead, Dr. Tharion feels there is much scope for enhanced community-based activity, use of emerging technology to help augment what especially persons with high level spinal-cord injury could do and in helping in the development of quality centres in other parts of India.
He also strongly believes that the emphasis on walking as the rehabilitation goal will remain.
“The emphasis on making patients walk still holds true, as we found many years ago that patients who were rehabilitated only on a wheelchair had more complications if they are sent home, especially in the villages. Architectural barriers are enormous even today. We found that persons who walked even a short distance survived more and their social acceptance and success was much better as they were able to go out more from one point to another.”
At Rehab, patients gather in the expansive verdant spaces abutting the State highway or around the pond that is at the centre of the facility in the evenings. There, they share their experiences or even just hang around, bonds build that provide strength and confidence. Every time they pass by the montage of Dr. Mary Verghese, there is an additional dose of inspiration.
Every time patients see a person completing the rehabilitation program and going home, hope springs eternal and rests in first hand evidence that restoration is possible from the wrecked state in which most come. Few would have imagined the difference Rehab would make to their quality of life. This, in a nutshell, is the core of this world-class centre offering service with a smile.
The author is co-founder of Spinal Care India.
DR.MARY VERGHESE: ‘Innate ability to inspire’
DR. SURANJAN BHATTACHARJEE, Director of Christian Medical College, Vellore, knew Dr. Mary Verghese – a paraplegic due to a road accident in 1954 and the first specialist in Physical Medicine & Rehabilitation (PMR) in India – in a variety of roles as a student, intern, doctor, friend, and as the person who carried forward her pioneering work. His reflections:
If Dr. Mary Verghese were not courageous and brave, PMR centre in Bagayam would not have happened.
She had vision. She was able to recognise that perhaps even this accident had a purpose, way of helping others and a belief that she was not doing this alone.
She had perseverance. She had for most part, lived in America. There for her eating, dressing and all other activities of daily living would have been western. She had to adapt herself. She did so, with great determination.
In those early days, her example was so outstanding, that she drew a lot of support by inspiring others.
The magical part of this work was that she never had to tell patients that life is possible after a spinal cord injury. They could see she was diagnosing, treating and also operating on them from a wheelchair.
She set up the Indian Association for Physical Medicine & Rehabilitation by roping in professionals from Kolkatta, Kerala, Bombay, Delhi and Vellore and was its first president .
Dr. Mary Verghese also realised that she had to help allied health professionals. She trained her first occupational therapist and a physical therapist and trained volunteers to do a variety of tasks.
She recognised that there was a need for a postgraduate program in this specialty for medical professions and set up the Diploma in PMR in CMC. Her own experience in struggling with physical challenges gave authenticity to the plans she made for Rehab.
We were lucky that the PMR department and Rehab were started by somebody, who was not just intelligent, brave, persevering, visionary and skilled with her hands, but who also knew what patients needed and made them available.
She was also particular about costs, “We cannot be expensive”, she emphasised.
Her courage is the most abiding memory. She was a lady, and in the fifties when she had her accident, women were becoming more independent. But still had a restricted role in society. She took on a leadership role despite her physical disability and did so well. She had the ability to inspire.
PREMIER REHABILITATION CENTRES
INDIAN SPINAL INJURIES CENTRE(ISCI)
HARVINDER SINGH CHHABA
MAJOR HPS AHLUWALIA is the Chairman of Indian Spinal Injuries Centre (ISIC). He is also the brain behind it. He was in the first Indian team that scaled Mount Everest on 29th May 1965, but became a tetraplegic due to a war injury exactly four months later during the IndoPak war. It was perhaps during his rehabilitation at Stoke Mandeville Hospital in the UK, that he dreamt of recreating similar facilities in India. He has had a distinguished career and has had several major achievements, which include authoring 14 books, and tenures as Chairman, Rehabilitation Council of India and President, Indian Mountaineering Foundation, leading the Central Asia Cultural Expedition tracing the Marco Polo Silk Route through intricate parts of China and more. DR. H S CHHABRA, Medical Director of ISIC, interviews him on his unending drive to contribute to the society.
What made you think of establishing Indian Spinal Injuries Centre (ISIC)?
Four months after climbing Mount Everest, I was severely wounded in the Indo-Pak war. The scenario of spinal cord injury management had not evolved in India at that time. No one could even tell the difference between quadriplegia and paraplegia, let alone its treatment. The general perception then, was to keep the patient on maximum bed rest with minimal movement of any limbs – the exact opposite of what was actually beneficial! There was no attempt to rehabilitate a person, or to care for the person’s emotional well-being! Bed sores and Urinary Tract Infections were rampant and mostly taken for granted. I was moved from one hospital to another as doctors were baffled by the extent of my injury.
After struggling for two and a half years in various hospitals, we heard of Stoke Mandeville Hospital in the UK. This hospital in Aylesbury, was specially designed to cater to Second World War patients and had a long waiting list. With the help of friends and the Government of India, I was finally sent to Stoke Mandeville Hospital for treatment. I arrived broken in body, but not in spirit. I was determined to rebuild my life, against all odds.
It was a life changing experience for me! Over the years, I visited Stoke Mandeville Hospital many times for my checkups. Every visit reinforced my conviction that India desperately needed a centre like this. Sir Ludwig Guttman, the founder chairman of Stoke Mandeville Hospital inspired me to follow my dream, while Dr.Walsh, his successor and my physician, motivated and helped me design and establish my dream project. I was really fortunate to get financial assistance from the Government of India and the Government of Italy.
What do you think were the biggest challenges you faced when establishing ISIC?
Perhaps the biggest challenge that I faced while establishing ISIC was to convince those at the helm of affairs that somebody who was not a medical professional, who was him self a wheelchair user could dream of building a medical facility. In fact I was blamed for trying to "build a castle in the desert.”
The other challenge was to convince people that a spinal injury centre was required and that it could be financially viable. ISIC is one of the very few spinal injury centres in the world that is not dependent on the insurance or the government and has, not only been able to break even, but also save enough to meet its expansion plans and replace its equipment.
Finding motivated and committed personnel and training them adequately in spinal injury management was another big challenge. There were hardly any trained personnel in spinal cord injury management in India and no training facility.
What has been the role played by ISIC in establishing rehabilitation services for SCI in India?
Indian Spinal Injuries Centre began as a dream in my heart – a dream of offering people with disabilities a new hope for a better life. My dream was to build a world class spinal injuries hospital with complete facilities for medical, surgical and rehabilitative care. At that time, there wasn't a single such hospital in India!
Today, the Indian Spinal Injuries Centre is a landmark healthcare institute on par with the best in the world. We continuously strive to make a difference, upgrade quality and bring about awareness of health and disability conditions amongst our patients and society. ISIC is one of the most advanced Spine, Orthopedic and Neuromuscular surgical centres in India. It provides comprehensive medical care of the highest international standards and conducts some of the most advanced surgeries performed anywhere in the world. It has revolutionised the diagnosis, treatment and rehabilitation of patients with spinal cord injuries.
The Centre provides state of the art facilities for the care of all types of spinal ailments. It has a dedicated team of trained and acclaimed spine surgeons, supported by cutting edge medical and surgical technology.
At ISIC, serving the needs of society and of people with disabilities in particular, has been a part of our corporate culture. From the very beginning, our vision was beyond merely setting up a hospital. Our aim was to build a more inclusive society; to bring people with disabilities into mainstream life; provide them with the best medical and surgical treatment anywhere in the world, rehabilitate them with a complete regimen to help them lead a better, more fulfilled life.
We take pride in introducing the true essence of the term 'Rehabilitation and SCI Management' to Indians and making it accessible to one and all in the country. The rehabilitation department is considered the core element of our hospital. It offers complete facilities of physiotherapy, occupational
therapy, wheelchair training skills, assistive technology, prosthetics and orthotics, vocational training, dancing and sports therapy. Our solar heated hydrotherapy unit is considered our unique selling point as it is the only one of its kind in India and the largest in Asia.
The centre has also played a major role in the field of education and human resource development in the field of spinal injuries. The ISIC Institute of Rehab Sciences runs various prestigious education programs including fellowship in Spine Surgery, Post Graduation in Orthopaedics, Rheumatology, Anesthesia and Hospital Management as well as Masters in Physiotherapy, Occupational Therapy and Prosthetics & Orthotics. The Institute was the first in India to offer Masters in Prosthetics & Orthotics and second in India for fellowship in the Spine Surgery Program.
ISIC has also played an extensive role in the field of research for spinal cord injuries. It has not only pioneered various clinical research programs but has also set up basic research facilities. It has successfully conducted and published the first Indian Council of Medical Research approved trial in the country in the field of stem cells for human spinal cord injuries.
As spinal cord injury is more prevalent in weaker sections of society, we reserve 10% of our total bed strength for patients who belong to below the poverty line category. There is no discrimination between the services provided to persons who receive free care and those who pay full fees.
The ISIC model is economically sustainable, equitable and replicable; it has also become a popular brand name in rehabilitation programmes at both national and international levels. We take pride in rehabilitating thousands of persons with spinal injury every year.
In recent years, we at ISIC, have begun to play an active role in raising awareness on the rights of people with disabilities to safeguard their interests, prevent unfair discrimination and ensure justice for them. We are also fighting to ensure representation on any committee that is formed to look into legislation for persons with disabilities, in a spirit of 'nothing about us, without us.’
What do you think are the main reasons for the success of Indian Spinal Injuries Centre?
I attribute the success of our institute to three main factors; first of all, the inspiration from Mount Everest to always reach for the highest; secondly, the extraordinary dedication and hard work of our exemplary team of medical specialists and all our staff, who continue to help us maintain the highest standards; and thirdly, the strength and courage I see every day, in the eyes of our patients – some of whom have travelled half way across the world. They are life's real heroes – people who continue to teach us, that there is no such thing as disability. The only barriers are those that exist in the mind.
What plans does ISIC have, to further develop rehabilitation services in India?
Indian society is undergoing a significant and valuable re-assessment of its understanding of disability. There is a paradigm shift in our approach: from a medico-social model to a rights-based approach towards persons with disabilities. While the old paradigm viewed persons with disabilities as “defective and in need of fixing”, the new paradigm perceives disability as a “natural and normal human experience.” The
focus now is on adjusting the environment and not the person. ISIC has played, and will continue to play, a leading role in advocacy in this field.
The 12th Five Year Plan foresees the establishment of 20 additional Spinal Injuries Centres across India, based on the ISIC model. ISIC would hopefully play a leading role in it as it has done in the setting up of Regional Rehabilitation Centres at Bareilly, Jabalpur, Mohali and Cuttack. Of course ISIC will continue its work in the field of human resource development and research in the field of spinal injuries.
Through the setting up of Spinal Cord Society, ISIC has facilitated knowledge sharing amongst medical and paramedical professionals all over India. We are now in the final stages of launching the South-Asian Council on Spinal Cord Injury (SCSCI) as a new initiative.
What is the source of inspiration for all your achievements in life?
My life has been a long journey of extreme ups and downs…of hope and despair and of aspirations and achievements. Every experience has taught me a valuable lesson and helped me shape my philosophy of life but my main source of inspiration has been "The Everest.” I would want to recount here an event which perhaps had the most affect in moulding a positive philosophy in life. It was the last leg of our climb to Mount Everest. The morning of 25th May dawned bright, but chilly. There had been a big avalanche over Camp III. I rushed outside. It was a frightful sight. The camp, with its colorful tents - luckily unoccupied at the time - had been completely wiped out. While there was no loss of life, we had lost something as precious. The cylinders of life-sustaining oxygen, which we had so carefully conserved and stored in the camp, had been buried under the avalanche. With them too, it seemed, had been buried the hopes of our summit party reaching the top.
The leader had no option but to call off the final assault, as without oxygen, it was doomed to failure. A search seemed pointless, as who'd ever heard of bottles being dug out from under six feet of snow? But we did not want to give up and persuaded the team leader to allow us to try recovering the cylinders even though it seemed an impossible task.
After six hours of digging, worn out and depressed, we could not go on like this much longer. For renewed hope we turned to God: the Sherpas, a religious lot, were already praying. Before long, to our utter surprise my axe hit an oxygen cylinder. A few more whacks in the thick snow and we soon located another and yet another. What a moment of supreme happiness! It was at this stage that I felt a fierce determination flow into me – nothing could stop us from reaching the summit.
People look on you as a role model. What is it that you have learnt in life and would want to share with people?
As I look back at life, it is nothing but power of the mind that matters the most. Each man carries within himself his own mountain, with its own cliffs, crevasses – fearful, sheer and unfathomed, which he must climb to attain a fuller knowledge of himself. The physical act of climbing a mountain has a kinship with the ascent of that inward spiritual mountain which every man has to climb sometime or the other.
Scaling Mount Everest and setting up ISIC have taught me a powerful truth:
Life is all about conquering the other summit – the summit of the mind.
PREMIER REHABILITATION CENTRES
The MILITARY HOSPITAL, Kirkee
GENERAL KULDIP SALGOTRA
The Indian armed forces have a well planned comprehensive management plan for all spinal cord injured persons. The plan covers everything – from injury to full rehabilitation. The initial treatment is done at designated neurosurgical centres spread all over India. These centres are located at Srinagar, Udhampur, Chandigarh, Delhi, Lucknow, Calcutta, Pune, Mumbai and Bangalore. After the initial management at these centres, which includes surgical stabilisation of spine, those with paraplegia/ quadriplegia are transferred to Military Hospital Kirkee, for further treatment and rehabilitation. Following the full rehabilitation of the patients, they also have the option of joining paraplegic rehabilitation centre, Kirkee, Pune as permanent members.
Established as a 400-bedded hospital on January 7, 1949, the Military Hospital, Kirkee is one of the largest and best equipped spinal cord injury centres not only in India, but in whole of South East Asia.
The 30-bedded spinal cord injury centre was inaugurated on November 13, 1968, with the transfer of 20 persons with
paraplegia from Command Hospital (Southern Command). The Paraplegic Rehabilitation Centre for paraplegics of all the three defence services was set up near the Military Hospital, Kirkee, Pune in 1974. The facility has been expanded twice since then, and currently has 109 beds, including 83 single and 26 married quarters. The present strength of this spinal cord injury centre is 80 beds. A dedicated team of orthopaedic surgeons, affiliated neurosurgeons, urologists, trained nursing officers and other paramedical staff makes it a full-fledged spinal cord injury rehab centre. Major physiotherapy centre and occupational therapy centre provide the necessary back up facilities for physiotherapy and occupational therapy, which are very essential for the final rehabilitation of spinal cord injury patients. In India, this Centre holds the record of having managed the maximum number of persons with spinal cord injury. This Centre has pioneered the management of spinal cord injury patients and rendered yeoman services to thousands of people.
After the medical and rehabilitative treatment at Military Hospital Kirkee, there are those who require extended rehabilitation services to prevent other complications. Thus, the Paraplegic Rehabilitation Centre for paraplegics, of all the three defence services was set up near the Military Hospital, Kirkee in 1974.
The centre has an indoor sports complex that provides facilities for table tennis, throw ball, badminton and a stage with PA equipment for entertainment programmes and conferences. The area for outdoor sports has a covered basket ball-cum-tennis court and facilities for providing field and track events.
Subsequently, there is aftercare and medical aid including free boarding, lodging and financial rehabilitation to such paraplegics/tetraplegics of three defence services after they are discharged from Military Hospital, Kirkee.
PSYCHOLOGICAL ASPECTS & COPING MECHANISMS
Spinal cord injury is a devastating and life-changing experience that can happen to anyone at any time. The extent of the impact that this has on the person and his/her family depends on several factors like personality of the individual, the extent of physical incapacitation, socio-economic status, age, etc.
The sudden and unexpected onset of the disability also comes as a big shock to the affected persons, and it is natural that they start counting their losses first and start living in the past. They begin questioning the medical team; barraging them with all their doubts on their physical status. Therefore, extreme caution must be exercised in revealing the right facts to them at this stage.
“I was driving my bike, enjoying a pleasant conversation with my friend. The excitement made me rev-up the accelerator. I never noticed the speed. Speed had always thrilled me. By the time I realised that I was speeding towards a truck, it was too late and I was almost underneath it and soon became unconscious. Three days later, when I woke up, I was lying in a hospital bed. I saw my mother's swollen, tearful face. Suddenly, I felt a shooting pain in my back. I tried to move. I realised that my legs were like logs of wood - too heavy to lift. I asked the nurse when I would be able to move on my own. The prolonged silence made me very angry. I started yelling. This continued for a few days. Slowly I realised that I have to remain this way for a long time, probably throughout my life. I started thinking that I had spoilt not only my life but that of my family members also. At that moment, I questioned God: “Oh God, please tell me what crime I've committed that you punish me like this. Please take away this sinner. I don't want to live anymore.”
Situations and reactions as these occur to everyone who has suffered spinal cord injury. The physical pain, the agony, the level of dependence and the financial losses make them think so. During the process of coping, they go through different mental states.
In this sensitive phase of spinal cord injury, the person and family are in the dark. They experience a very big shock and a sense of helplessness. This grief can be interpreted as depression. Before developing into depression however, the person goes through feelings of loss, fear, insecurity, guilt, anger and anxiety. The anger towards oneself and towards the others around can result in aggressive behaviour. They start believing that the doctors treating them are responsible for their disability. They do not want to cooperate with the professionals and sometimes use harsh words to insult them. If the anger is towards the self, they withdraw from food, physical hygiene, etc. They sometimes go to the extent of harming themselves with self inflicted wounds. At this stage, the person has to be taught Anger Management. Various techniques to express anger can be useful at this stage. Trauma counselling also can be useful in order to deal with the fear and the feeling of loss.
The person may start questioning the team for the period of time required for recovery. Along with that begins self- questioning and questioning God. As the team can't answer the questions directly or can't commit to a time span, he/she begins to lose faith in them. The search for cure starts at this point. They approach every astrologer, quack or even those who practice black magic. This not only ends in great financial losses but also adds to the level of depression. Reality can be revealed to some extent depending on the patient's and the family's condition. Support from the peer group is very useful at this stage. The counsellor has to encourage the patient to express his/her emotions. A good atmosphere has to be maintained for catharsis.
Many spinal cord injury persons expressed that, when they were in the hospital, they thought they were the only ones in this world to be in such a tragic situation and this thought created a feeling of jealousy towards other people who are able to walk and
move on their own. Jealousy also results in developing self-pity. Sibling rivalry can reach its peak and result in various attention-seeking behaviours. Behaviour modification techniques can be helpful for the patient.
These feelings of fear, anxiety and insecurity tend to increase during the transition period from hospital to rehabilitation centre. This manifests as Irritable Bowel Syndrome, severe aches and pains, sleeplessness, loss of appetite, aggressive behaviour and so on. At times like these, various Stress Management Techniques have to be used to ease out these negative emotions. Relatives can be invited to attend the various therapy sessions or group activities so that they can be briefed about the rehabilitation programme.
The patient transferred to the rehabilitation centre without proper preparation may come with a lot of unrealistic expectations about recovery. spinal cord injury persons always expect a miracle in their life and expect 100% recovery. Most of the cases expressed that they saw themselves walking in their dreams. At the rehabilitation centre, they are suddenly exposed to a group of people with the same problems. The sudden realisation that it is incurable and one has to live with disability is too much. This gives way to defence mechanisms such as denial. The “why me?” question nags him/her. “Am I a big sinner, that God has punished me?” This can lead to withdrawals from communication, hygiene and sleep disorders and has to be dealt with extreme sensitivity. They have to be helped to use the right coping mechanisms. Relaxation, meditation and yoga are used to relieve stress and deal with problems in realistic ways.
Teenage spinal cord injury persons also feel ashamed at becoming wheelchair users. This is the age for hero-worship and positive peer group influence all round. The fear of non-acceptance by peers and negative body image can force them into refusing the use of a wheelchair, which in turn can result in denying oneself the use of assistive devices in the ambulatory stage. Here, positive reassurances can help the person make better adjustments.
Various sexuality issues also have to be counselled along with the spouse. Marital disharmony and rejection by the spouse can cause severe depression or suicidal tendencies.
The spinal cord injury person also needs help in socialisation and inclusion within the community and society.
A spinal cord injured person thus goes through various stages of shock, denial, repression, anger, anxiety, depression, bargaining and finally, adaptation. Counselling, therefore, has to be begun right at the ICU itself. One has to be helped to realise oneself, develop self confidence and a positive self image, to accept and enjoy the right to live and right to choose appropriate methods for his/her integration into a new world. All the team members have to be informed and their participation has to be ensured for complete and successful rehabilitation.
RAMPS? OR CRAMPS!
Ten super examples of (c) ramps that people on wheels have to put up with which may bring on a grin or grimace on your face.
Spinal cord is the main life line of nerves; the communicating column between the brain and the rest of our body. Our nerves make our diaphragm and intercostal muscles of respiration work, our hands and legs move, make us feel the different senses of touch, pain, pressure, temperature, joint position, control our bladder and bowel and sex function. Injury to the spinal cord (which is well protected inside the vertebral column of 33 vertebrae), causes paralysis/weakness of arms, trunk, lower limbs, breathing difficulty, loss of sensations; the bladder and bowel control is affected, temperature regulation and sexual function are affected.
If all four limbs are affected, the person is referred to as having tetraplegia or quadriplegia.
When the thoracic and lumbar spinal cord is affected, affecting the trunk and both lower limbs, but not the upper limbs, the condition is known as paraplegia.
In India, there are over 10,000 people who acquire spinal cord injury each year. About 8,000 of them have paraplegia and an estimated 2,000 have tetraplegia.
Management of spinal cord injury is multi disciplinary team work, requiring the intervention of the SCI emergency medical team, the spine surgeon, the neuro surgeon, intensivists, nurses, physiotherapists, occupational therapists, urologists, plastic surgeons, counsellors, the orthotists, assistive technology specialists, the family and the care-givers.
Here, the role of a physiotherapist is extremely
vital. Physiotherapists are concerned with the restoration of functions: the movement skills needed for daily living in the indoors and the outdoors and whilst travelling. Physiotherapists work for the optimisation of movement skills, since total restoration of function is not possible.
The physiotherapist becomes a friend, a guide and motivator and a catalyst, instilling positive optimism both with the SCI person and with family and carers, thus enhancing and giving assurance on the quality of life. The physiotherapist, along with everyone concerned, sets collectively realistic goals that can be achieved.
Thus, the physiotherapist is involved in the entire process of this optimisation/restoration of functions right from the intensive care unit, to the step down to the ward and the physiotherapy department where the active rehab begins. Physiotherapy happens at all levels – at home, in the community, leisure and sports, commuting, inclusion at school, college, work place and so on.