An NGOs Journey in PPC, Pain Relief, and Palliative Care Society, Hyderabad

Pain Relief and Palliative Care Society (PRPCS) is a registered charitable society established in the year 2007 with a vision to spread Palliative Care and End of Life Care for patients living and suffering from incurable diseases like cancer. Today, PRPCS is one of the largest NGOs for palliative care in the region offering extensive home care service in the city and a 30-bed hospice facility for patients with life-limiting illnesses and supporting similar programs in other regions like Kurnool and Puttaparthy, all entirely free of cost. The organization has played a significant role as a knowledge partner to the Government of Telangana in establishing the district-based palliative care program in the state.

PRPCS is well known for its pioneering efforts in the field of pediatric palliative care (PPC). It has a unique and comprehensive PPC program embedded in the government tertiary cancer and children’s hospital and extending to the community. All the children admitted and receiving treatment in the government cancer hospital are also seen by the palliative care team consisting of PPC consultant, nurses, and a counselor. This is indeed a unique initiative and probably the very first time that both the oncology and palliative care team work together to take care of all physical, emotional, and psychological needs of the patients and the caregivers.

The presence of a dedicated PPC team in the government tertiary children’s hospital is a first step into the unexplored territory in India of providing non-cancer palliative to children and neonatal and perinatal palliative care.

The continuum of care in the community is ensured by means of a dedicated child’s palliative home care program. All these children with cancer as well as with non-cancer conditions are seen at home by qualified professionals when they are not able to travel to hospital. Medicines and equipment required to maintain a better quality of life are provided free of cost. The family is taught to feed and take care of these children. These families who were earlier directionless on how to manage, feel very grateful when the team of doctors, nurses, and counselors provide a structured approach to care for their loved ones till the very end. For the families it is difficult to take care of the siblings of these patients. Many times they too drop out of school and are neglected. With intervention by the team and coordination with other NGOs, many of these issues are addressed and better options are provided.

Pediatric Hospice called ‘Mandara Hospice’ is another such unique initiative. This is a 12-bed dedicated pediatric hospice facility in Hyderabad where children and their families get compassionate end-of-life care in serene and calm surroundings which is very different from the busy, overcrowded ward of a tertiary cancer hospital. The calm, serene surroundings help in providing the comfort required for these patients who are at the end of life. Giving them food of their choice, providing play and recreation with the help of play therapists, and counseling help by a highly skilled pediatric counselor and the support of a highly specialized pediatric medical team provide children and their family a protective cocoon to make their end of life experience free of pain and suffering and of peace and dignity.

PRPCS is one of the nodal centers in the country and for the Southeast Asian region for training, capacity building, advocacy, and research in palliative care. The one-year PPC fellowship offered by the PRPCS and pediatric ECHO training is very popular and sought after endorsed by the Royal College of Pediatric and Child Health (RCPCH).

Behind these achievements lie extraordinary stories of hope, courage, love, and compassion. Palliative care is a nascent branch of medicine yet to take roots in India. Our present health system both in Government and private sectors has no place for care of terminally ill end stage patients suffering from cancer etc. These patients will not go back to their previous lives and have to deal with the ultimate reality of life ending in the near future. PRPCS today is one of India’s largest palliative care service providers trying to bridge this gap by providing this service to such patients. No words can effectively describe and capture the dedication and selfless service of doctors, nurses, social workers, physiotherapists, and so many others in the organization who work tirelessly and reach out to the patients and their caregivers for providing care, comfort, and dignity in the last stages of their lives.