India’s healthcare system has made significant advances in specialised and tertiary care. However, for individuals living with spinal cord injuries, medical intervention is only the beginning of a far more complex and often unsupported journey.
A spinal cord injury is not just a clinical condition—it is a life-altering event that affects mobility, independence, livelihood and dignity. Yet, rehabilitation and long-term support for such patients remain among the most neglected areas of healthcare in India, particularly for those from rural and economically weaker backgrounds.
Over three decades of working with spinal cord injury survivors through the Nina Foundation, I have observed a consistent and troubling pattern. Patients receive surgery in well-equipped hospitals, but are discharged into environments that are completely unprepared for their new reality. The system focuses on treating the injury, but pays little attention to what happens after the patient returns home.
For many, especially those in rural areas, this means returning to homes with no accessible infrastructure, limited family support and little or no understanding of how to manage their condition. Basic issues—such as mobility within the house, access to toilets, prevention of bedsores, bladder and bowel management and mental health support—are rarely addressed in any structured way before discharge.
The result is predictable: avoidable complications, repeated hospitalisations, financial distress, increased mortality of young patients due to urine infections, bedsores and depression and a significant decline in quality of life.
A key reason for this gap is the fragmented nature of care. A person with spinal cord injury may consult multiple specialists—surgeons, physiotherapists, urologists, counsellors—but these interactions are rarely coordinated. There is no single, continuous framework that addresses the patient’s overall well-being in a holistic manner.
Hospitals, understandably, focus on acute care. However, the absence of structured discharge planning and community-based rehabilitation creates a vacuum that patients and families are left to navigate on their own.
This is where a more human-centred approach becomes critical.
At its core, effective rehabilitation begins with understanding the lived reality of the patient. Where does the person live? Is the house accessible? Does the family have the capacity to provide care? Are there local resources available? Without addressing these questions, even the most successful surgical outcomes can fail to translate into meaningful recovery.
Simple, practical interventions can make a significant difference. Patients and caregivers need clear, accessible information in local languages about daily care, potential complications and preventive practices. They should be connected to peer mentors—individuals who have lived with similar conditions and can offer guidance and reassurance. A directory of local resources, including rehabilitation centres, medical professionals, equipment providers and support organisations, should form a standard part of discharge protocols.
Equally important is the need for better coordination among stakeholders. Rehabilitation is not the responsibility of one professional or institution—it requires collaboration amongst a multi-disciplinary team; healthcare providers, psychologists, diagnostics, urologists, plastic surgeons, skin specialists, physiotherapists community workers, non-profits, family members, caregivers and, importantly, patients themselves.
In this context, a design-oriented management approach to problem-solving offers useful insights. Rather than focusing narrowly on the medical condition, it encourages us to look at the entire ecosystem surrounding the patient and to develop solutions that are humane, practical, context-specific and responsive to real needs.
This means shifting from a system that is provider-centric (which operates in silos) to one that is patient-centric and user focused. Finally the goal of surgery is to improve the overall human being and regain maximum mobility. Do surgeons even inform poor patients about our government schemes, which would nullify them to pay huge amounts in the hope that they will be stabilised surgically to walk again? Patients spend their entire wealth in the hope that the surgeon will do this. This leaves them with no funds for the long haul of living a life with the most devastating disability, a spinal cord injury. It requires healthcare professionals to go beyond their immediate roles and engage with the broader challenges that patients face in their daily lives.
There are already examples of such approaches making a difference. Non-profit organisations working at the grassroots level have demonstrated that even with limited resources, it is possible to improve outcomes through continuous engagement, personalised guidance and community-based support systems. However, these efforts remain scattered and insufficient relative to the scale of the problem.
What is needed is a more structured and systemic response. Hospitals must integrate rehabilitation planning into the treatment process. Policy-makers need to recognise long-term care and rehabilitation as essential components of healthcare, not optional add-ons. Training programmes should equip professionals with a more holistic understanding of disability and recovery.
Spinal cord injury is not just a medical issue—it is a social, economic and human challenge. Addressing it requires us to move beyond isolated interventions and adopt a more coordinated, empathetic and practical approach.
Ultimately, the goal is not merely survival, but enabling individuals to rebuild their lives with dignity, independence and hope. This is not the responsibility of any single sector. It is a shared responsibility—and one that demands far greater attention than it currently receives.
(Dr Ketna L. Mehta, PhD, is founder trustee of Nina Foundation, a non-profit organisation working on rehabilitation and long-term support for persons with spinal cord injuries, particularly among economically vulnerable communities. She is an author, writer, inspirational speaker and management curator as well.)
Continuing education & awareness of the family , patient , medics and Society , will help to some extent.
People should keep writing to their Representatives in parliament and to the relevant ministries , to get the Government to get protective legislations in place , making holistic care , to start with , education of each Spinal injury patient , mandatory for the medics.
Before an Operation , Surgical Consent requires giving mandatory full information to the patient , else it amounts to negligence by law. Similarly , discharging a Spinal injury patient without full information about , how to take preventive care of oneself, that education is mandatory for medics.