During my childhood in the 1950s and 1960s, as the child of a Railway employee, I had my earliest encounters with the healthcare system. One memorable figure was Dr. Sabbarwal, a widely respected general practitioner at the dispensary. Patients would patiently queue for their turn to see him. Medications were dispensed in liquid form with a disagreeable taste, alongside a few pills, which could itself be discouraging. In cases of serious illness requiring a doctor’s visit, Dr. Sabbarwal would often cycle his way to the railway quarters after office hours in the evening, charging a modest fee of around Rs. 2, more as a token of gratitude than a requirement.
Later in life, another doctor from the dispensary, Dr. Bose, stands out as a dedicated and skilled practitioner. He made the decision to refer my father to the Northern Railway Central Hospital when his persistent fever proved unyielding to treatment. This led to my father’s admission to the hospital for a year, during which he was confined to a plastered bed to align his backbone. Surgery was avoided at the time, leading to a prolonged recovery period marked by its own set of complications. Despite the discomfort, this experience marked my first encounter with treatment by an external consultant in a Government Hospital. While we remain unaware of the fees charged by the hospital, we appreciated the dedication and professionalism of the medical staff.
In 2004, I was blindsided by a rare immunity disorder, leading to the development of retroperitoneal fibrosis while I was employed at the Royal Danish Embassy. Initially, I sought treatment at a private hospital under a urologist who happened to be a former neighbour. Unfortunately, he lacked experience in treating this rare condition, even mishandling the biopsy process, causing me undue suffering. Despite this, I continued with his treatment for two years, enduring frequent replacements of a stent in my ureter every three months, all while juggling the demands of my job, often experiencing alarming symptoms like blood in my urine due to what appeared to be unprofessional practices by him and his team.
Thankfully, a close family friend recommended seeking a second opinion at the All-India Institute of Medical Sciences (AIIMS), with intervention from the then Secretary of the Health Ministry, who had a personal connection. Following the consultation, it became glaringly apparent to me, under the guidance of the expert urologists at AIIMS, how poorly my case had been managed thus far. Subsequently, I underwent a series of change of stent on a quarterly basis at AIIMS to address the fibrous mass entangling my ureter. They deemed open abdomen surgery for Ureterolysis too risky due to the entanglement with blood vessels, I continued to receive treatment at AIIMS, undergoing regular stent replacements until 2008 when my treating doctor relocated to the USA.
Unfortunately, the team at AIIMS overlooked my declining calcium levels, which resulted in me needing a walking aid due to bone calcium depletion from prolonged steroid usage, leading to frequent admissions and ultimately costing me my private job. Despite this, I was fortunate to secure another job, though my experiences at AIIMS over the next year were far from pleasant, with increasingly painful stent replacements that seemed lacking in professionalism. Subsequently, I sought treatment at another renowned hospital through a retired AIIMS doctor, only to face further setbacks when my condition was misdiagnosed, resulting in a severe urinary infection due to delayed stent replacement.
It was only with the assistance of family friends, who happened to be doctors themselves, that I finally found myself in capable hands at another hospital. Here, I underwent laparoscopic Ureterolysis, providing me with relief from the ordeal of regular stent replacements. My ongoing treatment involves experimentation with various immunosuppressants and intravenous infusions, as doctors now claim to have a better understanding of my condition after eighteen years, although the journey for patients like me remains one of trial and error.
I continue to receive this treatment through the government system, fortunate to be entitled to it.
The purpose of recounting this lengthy narrative is to shed light on the state of India’s medical system and the risks inherent in placing our trust in it, given its historical informality and lack of regulation. In this blog, we will explore the pros and cons of regulating healthcare to safeguard the interests of patients.
Current Status
Patient Experience
My journey through India’s healthcare system has been marked by a rollercoaster of emotions, from hope to despair, as I navigated the complexities and uncertainties of diagnosis and treatment. One can imagine the condition of a family whose main earning member was going through the labyrinth of diagnostic tests, hospital admissions, uncertainties of job, financial stress and emotional trauma. Some super-natural power provided me and my family to face all this head on for several years. In spite of physical limitations, I never let my morale down-attended to my work in spite of walking with stick, severe swelling in my feet, increased water retention in my body etc. These personal experiences underscore the need for greater empathy and understanding towards patients facing similar challenges.
Lack of Formalization
India’s healthcare industry differs significantly from that of the USA. Over time, regulations in the USA have become increasingly stringent, making it nearly impossible for ordinary citizens or visitors to directly access specialist care without a referral from a general practitioner, often resulting in lengthy wait times. The system has become so rigid that a doctor relative of mine shared an incident where a specialist in the hospital where his own father was being treated couldn’t attend to him without a referral from a general practitioner. In contrast, in India, one can typically secure an appointment with a specialist by simply paying the fee, often on the same day or within a few days.
In my view, the system in India shouldn’t be as inflexible as that of the USA, but it also shouldn’t be so flexible that it diminishes the role of general practitioners to mere conduits for specialist referrals, particularly those working in government healthcare setups.
Lack of Accountability
Forgive my ignorance if I’m mistaken, but from what I understand, doctors in India enjoy a degree of immunity against legal repercussions for any harm caused to a patient due to errors in treatment. Pursuing legal action against a doctor can be daunting and financially draining for patients, who prioritize their recovery over seeking justice. This reluctance to challenge medical professionals is compounded by the perception of the medical profession as inherently noble. However, not all practitioners uphold this nobility, as evidenced by incidents such as one shared with me from the 1980s where a doctor demanded money to close the abdomen of a patient in the middle of a surgery. There is an urgent need to hold doctors more accountable in India and ensure swift resolution of complaints.
Variation in Cost
Having benefited from my service in the Central Government and opting to join CGHS, I have been able to access treatment that would otherwise be financially unsustainable for even the upper middle class. However, insurance companies typically exclude coverage for pre-existing conditions, leaving those without insurance to endure long waits at government hospitals. Furthermore, the significant disparity in consultation fees for specialists—Rs. 350 through CGHS compared to as much as Rs. 3000 for a brief consultation per visit for private patients—raises questions about fairness. Similarly, the costs of tests skyrocket for individuals not covered by an organization or insurance system. I would have expected hospital administrations to show more consideration towards patients who pay for their treatment out of pocket. As a result, patients across different socio-economic strata, including the poor, middle class, and upper middle class, are left at a disadvantage. There is a pressing need to establish reasonable upper
limits on the costs of each type of service rendered by hospitals, including consultations, diagnostic tests, surgical procedures, and other services.
Systemic Issues
Beyond my individual experiences, it’s essential to recognize the broader systemic issues plaguing India’s healthcare system. These include inadequate infrastructure, resource shortages, and disparities in access to care based on socio-economic status and geographic location. Addressing these issues requires comprehensive reforms at both the policy and implementation levels.
Instead of giving freebees driven by vote politics, it will serve India well to spend on improving these conditions.
Cost of Medicines
Recently, government doctors have been instructed not to prescribe medicines by brand name, and a system of ‘Jan Aushadhi’ (Public Medicine) has been initiated to make medicines more affordable. This brings to mind an incident from 1976 when I sought medication from a CGHS doctor for a persistent sore throat and fever. Despite being prescribed an antibiotic, my condition worsened. Frustrated, I sought treatment from a private doctor who prescribed the same medication. When I informed him that I was already taking it, he advised me to purchase it from the market instead, which proved to be the right decision.
While I fully support the government’s initiative to make medicines affordable for all segments of society, adequate measures must be taken to ensure quality control so that substandard medicines are not dispensed to patients in need.
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