M Suchitra/ Kochi
unique home-based palliative and chronic care movement is sweeping through Kerala. Thousands of trained citizens are volunteering two hours a week to take care of the chronically ill in villages and cities. Funding for this community-based scheme that has won WHO recognition comes in cash and kind from citizens, including schoolchildren, bus drivers, labourers and others.
The windowless room is dark and dingy, and smells of urine and medicines. For a few moments nothing is discernible. Then, the frail skinny form of 35-year-old Velayudhan lying on a cot becomes faintly visible. Velayudhan is paralysed from the waist down after a fall from a coconut tree five years ago. His twig-like arms and legs stick out from under the sheet covering him. There are sores all over his body. He is all alone in his hut, and looks depressed and gloomy.
"How do you feel today," asks Nishita, a trained nurse working with the Koilandy Palliative Care Society in Kerala's Kozhikode district, with a gentle smile. She and another volunteer, Anitha, start emptying the bedpan, dressing the sores, changing the condom catheter that allows Velayudhan to pass urine, checking the medicines on a nearby table, and dusting the bed -- all the while chatting with him affectionately.
"I can't even imagine what would have happened to me without these volunteers," says Velayudhan in a weak voice. "I would have died long ago." He says the volunteers even help feed him when his wife, a domestic helper, is away on work. According to Nishita, Velayudhan suffered from acute depression and even displayed suicidal tendencies. He recovered only after prolonged counselling by the volunteers.
The palliative movement, called the Neighbourhood Network in Palliative Care (NNPC), and started in 2001, has proved a tremendous success in Kerala's primary healthcare sector. It is a silent social revolution that's spreading fast from village to village, city to city. Participants include schoolchildren, senior citizens, labourers, doctors, farmers, housewives, and even the police.
Under this new initiative, thousands of trained volunteers from different backgrounds spend at least two hours a week on homecare visits, running out-patient clinics, organising family help, and raising funds. Besides dressing wounds and sores, they sit with patients and listen to their problems and fears. They also listen to the concerns of family members and train them in simple nursing tasks like catheterisation. All NNPC volunteer groups are supported by trained doctors and nurses.
The community-based palliative movement was an outcome of the realisation that patients with chronic and incurable diseases need long-term psychological, social and emotional attention alongside medical and nursing care. Each district is estimated to have over 20,000 bedridden patients. The existing hospital-centred services are designed mainly to look after people with acute illnesses; medical institutions alone cannot take up the responsibility of looking after chronically ill patients for very long. Moreover, even the limited services available are not accessible to most, especially the poor.
"The NNPC is an attempt to develop a sustainable, community-led service focusing on the long-term home-based total care of patients with chronic and incurable diseases," says Dr K Sureshkumar, director of the Kozhikode-based Institute of Palliative Medicine (IPM), which spearheads the movement. "The NNPC is a volunteer-driven movement that tries to empower local communities to take care of their own chronically ill patients." Doctors play only a secondary role in the movement.
Born in the early-1990s, the palliative care movement was clinic-based and served only terminally ill cancer patients until it took a major turn, in 1998, with the establishment of a palliative society at Nilambur, in Malappuram district. K M Basheer, a farmer with formal education only up to Class X, and two years experience as a volunteer in another clinic, took up the leadership. Basheer was perhaps the first non-medical person in the world to head a pain and palliative care unit.
He, along with a few friends, went around the locality identifying terminally ill patients. "There were many chronically ill people with all sorts of diseases, apart from cancer," he says. "Most of them were very poor. Prolonged treatment and huge medical bills had broken their families. We had to address the social and financial needs of the families too." Basheer and his team approached as many people as possible for assistance. Everybody was willing to help in one way or another. In just one year he had 60 trained volunteers; the following years he had many more.
With the success of the Nilambur initiative other units were opened in the district; within two years they had achieved 70% home-based palliative care.
Slowly, the movement spread to the neighbouring districts of Kozhikode and Wayanad, and further. Thousands of people volunteered their services. Following the massive community support, a network of palliative societies (the NNPC) was formally launched in 2001.
"It was a spontaneous evolution, not planned by any single individual," says Dr Mathews Numpeli, programme executive of the NNPC. "Many volunteers have much better administrative and organisational skills than the average healthcare professional."
The NNPC has now grown into a huge network of 150 palliative clinics, supported by 10,000 active trained volunteers, 85 doctors and 270 nurses who look after around 25,000 patients at any point of time. Malappuram district alone has 29 palliative care societies, 25 of which have their own clinics with paid part-time doctors, auxiliary nurses and their own homecare vehicles.
Each unit serves four to five village panchayats. Though, initially, the programme focused on patients with advanced cancer, it now includes geriatric problems, degenerative neurological disorders, chronic infectious diseases and chronic psychiatric illnesses.
Thanks to the initiative, the districts of Malappuram, Kozhikode and Wayanad all enjoy around 70% coverage in palliative care; palliative care coverage in Kerala is 20%, in the rest of the country it is just 1-2%, says Dr Anil Kumar Paleri, honorary secretary of the India Association of Palliative Care. He adds: "Under the watchful eyes of the community, the quality of palliative care has also improved." The NNPC's main problem is non-availability of full-time doctors trained in palliative care.
Since most patients are extremely poor, volunteers often have to financially support their families and provide rice, provisions, clothes, books and fees for schoolchildren. "We divide the patients into very poor, poor, middle class and well-to-do groups," says V M Ramla, who has been working as a volunteer in Malappuram district for 15 years. "The first two groups are given all sorts of support. The other two groups are usually provided only medicines, nursing care and emotional support." All services -- including doctors' consultations and medicines like morphine -- are free of cost for all sections of people.
Funding has never been a problem for the NNPC. Most funds come from the community itself through small donations. These may be Re 1 a day, or even less. Tens of thousands of ordinary people -- labourers, headload workers, autorickshaw drivers, government employees, teachers, even schoolchildren -- make small donations to keep the movement going. In Nilambur, for example, the four-person crew of each bus that enters the bus stand donates 50 paise a day. Each day, roughly Rs 500 is collected from this source alone. Employees contribute Rs 10 on salary day, students save Re 1 a month, headload workers leave whatever small change they can spare at the end of the day; even toddy shops have donation boxes!
"On an average, Malappuram district raises Rs 10 lakh every month," says Dr Mathews. "After the initiation of the NNPC there has been a ten-fold increase in funds available for palliative care."
Besides money, support comes in other forms too. Panchayats, municipalities and corporations contribute to the initiative. Individuals and shopkeepers donate rice, provisions, clothes, books and uniforms. Many families keep aside a handful of rice every day. "The Omni we use was donated by a well-wisher," says 27-year-old T K Muhammed Younus, a marketing manager by profession who heads the Koilandy Palliative Society in Kozhikode district.
"People are willing to support us because they know they are the beneficiaries," says Basheer. "They know where the money comes from and where it goes. Everything is transparent." These small donations are not only a stable and sustainable source of support, they are also feedback from the community on the functioning of the NNPC.
Recognising the importance of palliative care, the Kerala government -- in a first for any government in Asia -- came out with a palliative care policy in April 2008. The policy emphasises a community-based approach to palliative care and considers home-based care the cornerstone of palliative care services. It also highlights the need to integrate palliative care with primary healthcare.
"The government has formulated a detailed action plan," points out state health secretary Dr Viswas Mehta. "The emphasis is on training professionals and non-professionals, including volunteers, in setting up palliative care services both in the public sector and in the community, integrating palliative care into the activities of panchayats, and making essential drugs, including morphine, available."
In tune with the state policy, National Rural Health Mission (NRHM) Kerala has started a project for the development of community-based healthcare services for bedridden, elderly, and terminally ill patients. "The Rs 4 crore project is the largest palliative care project in India," explains Mohammed Saif, state manager of the palliative care component of the NRHM. "Also, this is the only palliative project under the NRHM in India." The project aims at awareness and capacity-building among local self-government officials, healthcare professionals, local politicians and students.
Kerala has already integrated the services of around 26,000 ASHAs (accredited social health activists) with the community-based palliative care units. No other state has done this so far, Viswas Mehta points out.
The success of the NNPC has motivated local self-government institutes to come forward with new initiatives. The Malappuram district panchayat has formulated a joint homecare programme with NNPC groups, called Pariraksha (protection), for all chronic and terminally ill patients in the district. The programme, implemented through primary healthcare centres (PHCs), will support 20,000 chronically ill patients, according to Salim Karuvambalam, health standing committee chairman of the district. Gram sabhas too have become more active now, and local bodies consult the NNPC whilst formulating health projects. A stage has been reached where no political party can ignore the people's health movement.
The Kerala model of palliative care has won global recognition, with the World Health Organisation (WHO) promoting it as model for developing countries.
But can the model be replicated in other parts of the country? "Adopting the same model might not work," says Dr Paleri. He points out that Kerala has achieved total literacy and has a high level of social and political consciousness. Caste-class-religious differences are minimal, compared to other states in India. But, Paleri points out, such community-based efforts could be taken as examples and new models developed for other places.