With its exceptional initiative, Aymanam tells the rest of Kerala to look at the huge gap in palliative care in the State
It was in March 2009 that Aymanam grama panchayat identified a new challenge to fight: bedsore. And, soon enough, Aymanam became one of the first local bodies in the State to take up the challenge of palliative care in a major way.
“None of us knew much about palliative care at that time, but we were sure that this was one area that the panchayat should venture into,” says panchayat president K.K. Shajimon. A random survey threw up shocking results: there were as many as 44 patients who needed palliative care, many of them bedridden for years and suffering from bedsores.
“We had no model to look up to and had to find our own way,” says Mr. Shajimon. The first step was to reach medical aid to the victims, many of them aged and staying on remote islets in the vast paddy polders of Kuttanad.
Among the patients was 42-year-old Ashokan, who had been bedridden for two decades after he fell from a tree. He was suffering from bedsore and volunteers could not even hold his back to clean him.
Things have changed and the panchayat has already provided him with a waterbed. But palliative care is not about old age or bedsores alone. And the panchayat authorities are waking up to the need for a comprehensive perspective on the issues involved — social, emotional, economic and spiritual.
Fatima is in an advanced stage of cancer, and her husband has left her. They do not have a regular income and the future of her only daughter, who has completed Plus Two, is now in the hands of the panchayat. “Till recently, people used called us to complain about lack of water, roads or electricity. Now they call us to change catheters,” Mr. Shajimon says.
More than a year into the palliative care initiative, Aymanam panchayat is slowly recognising the magnitude of the challenges involved and is in the process of establishing new linkages to address them.
At present, the palliative caregivers, including a nurse, the ward member concerned, the junior health inspector in the panchayat and two Accredited Social Health Activists (ASHA volunteers) and a few of the panchayat members, visit the patients every Thursday.
“We are following the home-based model,” says Febi Leo Mathew, secretary of Mother Palliative, an NGO, which has established a working relationship with Aymanam panchayat. Palliative care, he says, needs empowerment of the family members and close involvement of the neighbourhood. Mother Palliative is now planning special programmes to take care of the emotional issues faced by not only the patients, but also their caregivers.
The panchayat is currently reaching out to civil society organisations to help the patients with their various needs. “Many of the patients need food and we have decided to link the nearest anganwadis to our programme. We raised the funds being allocated to the anganwadis from Rs.9 lakh to Rs.11 lakh to address the problem,” says Mr. Shajimon.
With the Ettumanur Block Panchayat agreeing to provide them with an ambulance, the linkage among the various tiers of local self- government has also been established. But the programme can move forward only if costly medicines and trained hands become available at the local public health centre. This, perhaps, needs a reorientation in drug policy and launch of a massive training programme.