India: Award and involving the community in the provision of palliative care
The Pain and Palliative Care Society (PPCS), Kozhikode has won the Indiavision ‘Person of the year 2007’ award. There were eight nominations for the final round this year. The jury, chaired by Sri MT Vasudevan Nair, was unanimous in selecting the Pain and the Palliative Care Society for the award.
The Pain and Palliative Care Society (PPCS) was formed in 1993 by a group of doctors and social activists in Calicut. The aim was to improve the quality of life of people living with incurable diseases through palliative care.
The Pain and Palliative Care Society started a palliative care clinic, in Calicut Medical College Hospital in December 1993, to offer symptom relief and emotional support for incurably ill patients. Later, a limited home care program was also started..
In the next few years, PPCS facilitated the initiation of similar palliative care clinics in many places, starting with Manjeri (Malappuram). All these palliative care clinics were doctor led, with the help from a few volunteers from the community.
The problems of patients with advanced diseases are complex. Physical problems like pain are only a part of the wider issues causing extreme misery in such people. Many of them are in need of enormous psychological and social support. A doctor or a hospital, or a health care institution, will not be capable of offering the holistic care that such patients need. The only possible answer to this problem is to involve the local community in the care of the patient and family. This realization has led the palliative care groups in Malabar to initiate a community owned movement in the care of the incurably ill, terminally ill, elderly and bed ridden patients in the region. This has been named the Neighbourhood Network in Palliative Care (NNPC).
Community owned programs:
The Pain and Palliative Care Society is internationally recognized today for the lead role it has played in the initiation of the successful community based palliative care program (NNPC) in Kerala and its further development through the Institute of Palliative Medicine.
NNPC was formally launched in 2001 as a joint venture of four. Since then, this community initiative has changed the life of thousands of patients with chronic and incurable illness. Active interactions with patients, family and volunteers from the community has also resulted, over time, in the replacement of a rather hierarchical doctor-led structure in palliative care in Northern Kerala with a network of community volunteer-led autonomous initiatives. Under the program, people who can spare at least two hours per week to care for the sick in their area are enrolled in a structured training program (16 hours of interactive theory sessions plus four clinical days under supervision). On successful completion of this ‘‘entry point’’ training (which includes an evaluation at the end), the volunteers are encouraged to form groups of 10 -15 community volunteers and to identify the problems of the chronically ill people in their area and to organize appropriate interventions. These NNPC groups are supported by trained doctors and nurses. NNPC groups usually work closely with the existing Palliative Care (PC) facilities in their area, or build such facilities on their own. Volunteers from these groups make regular home visits to follow up on the patients seen by the PC team. They identify and address a variety of nonmedical issues, including financial problems and patients in need of care; they organize programs to create awareness in the community, and raise funds for PC activities. Community volunteers act as the link between the patients in the community and the health care providers in the institution. NNPC does not aim to replace health care professionals with volunteers. Instead, what is being attempted is to supplement the efforts of trained doctors and nurses in psychosocial and spiritual support by trained volunteers in the community. The 64 palliative care units with more than 4000 volunteers spread over the seven northern districts in Kerala now look after more than 7000 patients at any point of time. Similar initiatives are now being formed in Alleppey and Kollam districts in the south. Patients include those with advanced cancers, people with old age problems, people bed ridden with spinal injury, those with kidney diseases, and people with chronic psychiatric illness. The majority of the patients and the community volunteers are from the lower socioeconomic strata of the society. The activity is particularly strong in Wayanad, Kozhikode and Malappuram districts.
Relevance:
The Pain and Palliative Care Society, through its activities in facilitating NNPC has proved that a combination of community participation and purposeful government programs can make good quality care a reality for thousands of people with chronic and incurable illness. This successful model of social interventions in health care has also shown that Keralites are still capable of organizing themselves on a platform of social justice to take care of the marginalized members of the society.