As an undergraduate student, I first visited Wenlock District hospital in 1978 and continued my postgraduate studies in paediatrics in Kasturba Medical College. Later, I joined as a lecturer and continued to work there as a paediatric specialist and Head of the department and subsequently retired in 2018.
Working at Wenlock and Lady Goschen hospitals gave me unique “Life experiences” which helped me remain ‘Humane’ throughout my career as a teacher. However, these experiences were often mingled with a feeling of desolation seeing the sufferings of children and pregnant mothers who came to the hospital full of hope and returned empty handed. It touched my conscience deeply and I decided to give them a helping hand to alleviate their grievances and pain.
Initial years of struggle made me feel helpless and abandoned. There were no duty days without declaring the death of their child to the unfortunate parents. Facilities available were not conducive to save lives and infrastructure for tertiary care was trivial.
Leading the initiative to improve the infrastructure along with colleagues in the department and philanthropists in the city, I struggled on. Facilities were upgraded with the establishment of a High dependency paediatric unit in Wenlock (1995) and the Neonatal intensive care unit at Lady Goshen hospital (1998). These functional units not only saved the lives of many but also provided evidence-based models to policymakers to improve public health care services for children elsewhere.
With the establishment of the Regional Advanced Paediatric Care Centre at Wenlock hospital funded by Infosys foundation and Government of Karnataka and many others, I was of the opinion that children would get the best of treatment. There was a systemic improvement in the quality of care provided to children in the government hospitals in Mangaluru. But to our dismay many a time’s patients refused treatment and left the hospital with their ailing child, often reaching their homes with a dead baby!
Analysis of the situation responsible made us realise that there were reasons for such early discharges. Incidental expenditure such as transportation cost, daily needs of the parents (and relatives) such as food and loss of earnings of the day did amount to large sums leaving them at the mercy of unscrupulous money lenders in the community. Hospital admission of the sick child had worsened their financial status forcing the unfortunate parents to take decisions to stop treatment much against their wishes making them carry a big burden of guilt throughout their life!
The Balasanjivini program started in March 2011 by the department of women and child development came as a ‘Life Line’ for such families. A unique feature of this program was that all the incidental expenditures were met and the compliance for treatment improved. Unfortunately, this program was stopped in April 2016.
Despite Balasanjivini program (and), the supply of free anticancer drugs by the government and free investigations by Kasturba Medical College, utilization of cancer treatment services at Government Wenlock hospital was unsatisfactory. Long hospital stay, frequent visits to the hospital, family maintenance expenditure resulted in debts and sale of even small personal (accumulated) wealth they owned.
Need of an NGO to provide psychological support to the entire family and meet their urgent financial needs was realised. Centre for Development, studies and Education took the initiative and started Care Child Cancer (CCC). In this program, a holistic approach was adopted by providing not only financial but also counselling and emotional support to the entire family, besides regular follow-up. This resulted in significant turnaround by parents of cancer children and treatment compliance improved, survival of cancer children reached around 70%. A small gesture by CCC was the key to the survival of many cancer affected children.
A small help from the civil society towards humanising treatment in Government hospitals will help save not only children but also many young patients who are dying for want of ‘timely’ care in spite of all facilities is the learning that emerges from this experience.
Dr. B. Shantharam Baliga,
Mangaluru – India