AIIMS initiative: For kids with autism and epilepsy, helpline offers a ray of hopehttps://indianexpress.com/article/delhi/aiims-initiative-for-kids-with-autism-and-epilepsy-helpline-offers-a-ray-of-hope-5146877/

AIIMS initiative: For kids with autism and epilepsy, helpline offers a ray of hope

A 2011 study by the International Clinical Epidemiology Network (INCLEN), on the prevalence of such disorders in children between the ages of two to nine, had found the number to be as high as 12.1% — with 23.7 million children estimated to have such disorders.

AIIMS had said it has ramps/lifts in all their buildings; specially designed toilets for handicapped in all buildings and provision for walking aids; and wheelchairs in all buildings. (Express photo/File)
Before the helpline was started, three studies were conducted — which compared telephonic follow up; face-to-face consultation; and the “accuracy of identification of critical clinical events in four months to 18 years of age” between paediatric neurology nurses and paediatric neurology residents.  (Express photo/File)

A round-the-clock, toll-free helpline for information on children with neuro-developmental problems was launched at AIIMS last week by Union Minister of State for Health, Anupriya Patel.  Three studies and years of research paved the way for the helpline, which is already fielding over 100 calls per day. The helpline (1800-11-7776) is managed by a team of four trained nurse counsellors, working under the supervision of resident doctors and faculty of the AIIMS paediatric department.

“The idea was for any parent or caregiver to be able to access free and accurate information. We are getting between 100 and 130 calls a day from across the country,” said professor of paediatric neurology, Sheffali Gulati.
Neurological disorders — including epilepsy, autism and developmental delay — are among the most common illnesses which paediatricians encounter, and which require long-term management.

An official explained, “The child neurology division at AIIMS caters to children from across the country and even patients from abroad. Even if we discount the travel expenses in such cases, we have often found that many of these visits are for small queries that can be resolved over the phone. We wanted to provide a reliable 24×7 service, where parents could get accurate information, while also reducing the burden on the hospital.”

A 2011 study by the International Clinical Epidemiology Network (INCLEN), on the prevalence of such disorders in children between the ages of two to nine, had found the number to be as high as 12.1% — with 23.7 million children estimated to have such disorders.

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Gulati added, “Over the years, more than half of the patients seeking paediatric consultations have neuro-developmental disorders. There are multiple social and demographic factors which are at play, and which can have a negative impact on a child’s neuro-development.”

Before the helpline was started, three studies were conducted — which compared telephonic follow up; face-to-face consultation; and the “accuracy of identification of critical clinical events in four months to 18 years of age” between paediatric neurology nurses and paediatric neurology residents. “The idea was to ensure that the system would be fool-proof,” said Gulati.

The service also makes a digital registry of all queries, which are then reviewed every six months to prepare a future plan of action. “In cases of any acute medical condition, whether emergent or not, the parents or caregivers will be guided about domiciliary care, while being asked to contact the nearest medical facility,” said an official.
Based on the information provided via telephone, doctors will decide whether a face-to-face consultation is required, the official added.

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