Massive fund crunch has eaten into the two-year-old palliative programme that provides free symptomatic care and counselling to patients suffering from terminal diseases such as cancer, AIDS or chronic renal failure and drug-resistant tuberculosis. Palliative care, started under the Central government’s umbrella National Health Mission (NHM), faced two consecutive rejections of budget proposals formulated by the state government. As a result, the scheme faces issues such as non-payment of salary to medical officers (MO), nurses and counsellors since May 2015, shortage of higher antibiotics and painkillers, and counsellors running the programme without training.
In 2013-14, the state government presented a budgetary requirement of Rs 6.7 crore, while a reformed proposal of Rs 4.8 crore was presented in 2014-15. Both the budgets were shot down. For 2015-16, a Rs 2.9-crore budget has been forwarded, which remains pending.
At least three employees attached with the programme have recently quit over salary dues. Four months ago, Dr Shantanu Raut, MO in Amravati, quit. That post remains vacant. Two months ago, a nurse in Satara quit. The most recent resignation is of Dr R L Sathe, coordinator of this programme who had not received salary for two months.
With resignations, vacancies ride high. Four of the eight MO posts and four of the eight counsellor posts are vacant. Of the 32 posts for nurses, seven are vacant.
Nurse Mayuri Rajudhutare has been living by borrowing money from friends in Satara, hoping the government will pay her nine months’ salary arrears. Last week, after she ran out of money, she allegedly tried to commit suicide but was “saved by another nurse”. In November last year, her grandfather died a painful death due to end-stage esophagal cancer. She did not have money to buy him morphine. “The painkiller stock was limited in office. I am a palliative care nurse and I couldn’t provide him a peaceful death,” she says.
In another instance, when nurse Vaishali Pundwadkar visited Shankuntala Shinde in Waifad village near Wardha, who was suffering from pain due to an untreatable breast cancer, Pundwadkar did not have higher antibiotic Merapenem to help the septuagenarian. Metastasis (spread of cancer to other organs) required immediate hospitalisation. But there were no funds to transport her to the district hospital.
“What we did then was just console her,” says Pundwadkar. Shinde died in October last year. Medical officer Gopal Landge still regrets, “She would have lived longer on antibiotics.”
Palliative care is still in its nascent stage in India. The ambitious programme’s highlight is to not only provide symptomatic support to terminally-ill patients with regular home visits, but to also counsel their families on how to help the patient live peacefully. It currently runs in eight districts — Amravati, Satara, Washim, Wardha, Gadchiroli, Bhandara, Chandrapur and Nandurbar. Plans to expand it in four more districts have been shelved in the absence of funds.
Home visits have now reduced. Earlier, nurse Shradha Kantekar would visit homes three days a week in Satara. It has now come down to once in a fortnight. She remembers visiting Savitribai Vinayak (71), suffering from acute pain due to an untreatable cancer in uterus, for eight days. “We had very little morphine to administer. Nowadays, we borrow painkillers from public health centres. The supply under this programme has stopped,” she said.
In Satara, 100 morphine pills were locally purchased after the state supply stopped. Now, only 40 remain for 1,210 patients registered for palliative care.
Satara MO Vaishali Khandare said, “It is our motivation to help patients that is making us work for free.”
There is also lack of training for palliative care. While one session of training was given to MOs and nurses, counsellors are yet to receive hands-on training. Counsellor Vishal Laul in Wardha said a training programme for counsellors was planned at Tata Memorial Hospital, Mumbai, but it never took off. “Later, we were told we could get trained spending own money,” he said. According to him, training is required for specialised disease such as cancer of a particular organ. “Until we don’t know about that disease progression, how will we counsel the family on it,” he asks.
Sunil Narayan suffers from stomach cancer that cannot be treated. When he heard about the palliative programme, he went back to Satara from Tata hospital in Mumbai hoping to get symptomatic treatment at home. But Narayan found out nurses and counsellors had no fund for home visits. Now, he has to travel to Satara district hospital every time for medical aid, which is either painkillers or sometimes pus management, a side effect of chemotherapy.
While palliative programme is the worst hit, several other programmes in the NHM are suffering. The village Child Development Programme shut across Maharashtra after funds from the Centre stopped. Now, the tribal and women and child development ministry are lending funds to the health department to restart the programme. The non-communicable disease programme is also facing huge vacancies and funds shortage is affecting screening of patients.
There are about 17 programmes under the NHM. With change in funding pattern announced last year in October, the state government will now have to provide 40 per cent budget for all NHM programmes instead of its earlier share of 25 per cent. The Central government’s funding has reduced to 60 per cent.
State officials admit they have been struggling for funds. “We have been mailing the ministry every month since October last year to understand whether or not they will sanction funds for the palliative programme. The state government has not extended any loan to run this programme, and we cannot make any appointment until more funds come in,” said Dr Sandhya Tayde, Joint Director at Directorate of Health Services.
While officials in the Central government declined to comment, the DHS claimed it had been asked to wait until budget for palliative programme was approved for this year. Even as a hopeful Mayuri awaits her nine-month arrears, Tayde says, “The programme will have to be withdrawn if the Central government refuses to sanction the budget.”