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Nobody to care for the caregivers

Bindu Shajan Perappadan
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Adequate labour laws still elude trained homecare attendants in this very nascent and unorganised industry

“It is no secret that after basic treatment at hospital, doctors often advise that cancer patients be looked after in a more comfortable and secure environment — at home. But homecare is demanding for both the patient and the caregiver. It requires families to cope with many challenges of maintaining the patient’s personal hygiene, delivery of medication, meal preparation, helping with home/hospital errands and basic nursing care. This is where the struggle begins,” says 46-year-old Kartar Singh of Dilshad Garden, who was diagnosed with brain tumour this past January and is currently receiving treatment at home.

Physically very weak and in need of constant care for his daily chores, Mr. Singh, who was the sole earning member of the family, is now dependent on financial help from friends to ‘stay afloat’.

Worse, it has now fallen on his young wife to take care of him and their daughter, run hospital errands and ensure that he gets good care at home.

“What we desperately require is a trained home healthcare attendant — an able-bodied and medically-trained person to look after a cancer patient like me at home,” says Mr. Singh.

But either such trained caregivers are not easy to come by or are very expensive.

“The shortage and high cost associated with homecare providers is a major hindrance for patients like me.”

And this sentiment is echoed by many.

“The city today is faced with an acute shortage of doctors and nurses, and we acknowledge that there is a growing demand for home care attendants who are an integral part of medical care giving,” says a senior health official, adding that the Health Department had therefore proposed a short course for attendants where basic nursing care will be taught along with the work of a dietician, physiotherapist and nurse to attendants for chronic patients.

“The situation is worse in case of homecare attendants. The industry is still in its nascent stage. Trained attendants are required to undertake the day-to-day care of patients at home. This sort of care can help reduce subsequent follow-up visits and readmissions and also improve the quality of life of the patient,” says a senior health official.

In the absence of any major government initiative to churn out trained homecare attendants, several non-government organisations and private groups have cautiously started entering the industry.

K.V. Hamza of non-government organisation DNipCare, which is working for long term, bedridden and terminally-ill patients, including cancer and geriatric patients, says: “We work with patients and families who need medical care and financial assistance. Stay-home patients take a toll on the family in terms of ensuring that they are looked after and cared for regularly. In the absence of trained and affordable homecare attendants, family members double-up as caregivers and sometimes this means loss of family income and education and compromises with the quality of life.”

“A majority of homecare attendants available in the Capital have come in through various NGOs and private players. Financial security provided by various government-run job guarantee schemes, including the Mahatma Gandhi National Rural Employment Guarantee Scheme, has resulted in fewer persons coming in for the profession which is very labour intensive and takes a toll on the caregiver — mentally and emotionally. Migration to other ‘more paying’ countries, where dignity of labour is assured, is another major drain,” adds a private player in the industry operating from West Delhi.

Caregivers complain about the absence of adequate labour law cover. “There is till no lobby demanding for homecare workers’ basic labour rights. With homecare required for the elderly, terminally-ill patients, those recovering from surgery and others, this is a fast growing and still a very exploitative industry that needs to be immediately regulated for standardisation of working environment and quality service,” says Kalu Ram, a homecare attendant who previously worked as a ward boy in one of the private hospitals in the Capital.

He added that the government has to step in and fix minimum wages and work hours for the workers.

“Some of us make less money than a security guard or unskilled labour. Also, we work without any vacation, assured monetary flow and medical coverage. Those in the private sector have some security net, but others are practically left to fend for themselves. As of now, there is nobody to care for the caregivers.”


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