Mumbai charity launches centre to address paediatric palliative gap

Mumbai: Paediatric palliative care has been a long-neglected gap in Mumbai’s healthcare system. Now, Sukoon Nilaya Palliative Care Centre, a subsidiary of the charitable organisation King George V Memorial Trust in Mahalaxmi that works with the underprivileged, is stepping in to fill that void.

Cardiologist Dr Eric Borges, who is the trust’s honorary chairman, is clear about the need: “Paediatric palliative care does not exist in Mumbai. Palliative care for non-cancer patients is simply not there.”

A large percentage of children lack access to paediatric palliative care, he said. While the govt released a directive for palliative care, Dr Borges said implementation could take years.

The Sukoon Nilaya paediatric centre will admit children suffering from a wide range of serious conditions, including neurological disorders such as meningitis, stroke and cerebral palsy; respiratory conditions including asthma and bronchiectasis; kidney disease; developmental anomalies; heart conditions; gastroenterological conditions; and arthritis. They will also receive state-of-the-art rehabilitation, including physiotherapy, occupational therapy and counselling.

The centre also aims to provide caregiver support. Families will be trained to care for their children at home, while caregiver burnout will be tackled through counselling, group therapy and yoga.

The trust already runs multiple centres that help youth in rehabilitation after major illnesses or accidents. Consider an 18-year-old aspiring who hopes to join the Indian Army. He came to Sukoon Nilaya after being diagnosed with Guillain-Barré syndrome, a rare autoimmune disorder in which the immune system attacks the peripheral nerves and affects movement. Over three months, a multidisciplinary team of doctors, occupational therapists, speech therapists, nurses, a social worker and a counsellor worked together to support his physical, emotional and psychological recovery, all entirely free of charge. Today, he walks forward with his dreams intact.

Another patient, a 16-year-old student, arrived at Sukoon Nilaya after suffering multiple fractures following a fall from the fourth floor. Through rehabilitation by a team of doctors, physiotherapists, occupational therapists and counsellors, again at no cost to her family, she gradually regained her strength and mobility.

Addressing a long-held misconception, Dr Borges said palliative care has for years been incorrectly equated with end-of-life care. “But it is not,” he said firmly, adding that patients can go on to survive and live for years after receiving palliative care.

All services, including treatment, investigations and food for patients and caregivers, will be entirely free. Dr Borges said the trust has received funding from Tata Trusts and philanthropic donations. Children aged 1 to 18 are eligible, with those crossing 18 transferred to adult palliative care.