The theme of this year’s World Hospice and Palliative Care Day is ‘Hidden Lives, Hidden Patients‘. The lives that are hidden in the developing world do not exactly follow the pattern of those in the western world. Take the case of paraplegics, for example. The west has a system for their care and rehabilitation, which is totally lacking in, say, India. Typically, following a road accident, a fall from a tree or from a construction site, a young man in his twenties becomes paraplegic. He gets an initial expensive treatment including several MRIs and a surgery, which often overnight convert a family to the ‘below poverty line’ category. In a few weeks, they are asked to go back home with a urinary catheter, with an advice to come back to change it in three weeks.
This is not the average patient who comes to a western hospice. The palliative care stream in Kerala, by and large, have chosen to include them in the purview of palliative care. Often we see them with huge, deep pressure sores. Even when the acute urinary infection is controlled and pressure sore is attended to, they are limited to confinement within four walls, because despite a wheelchair being available, no one teaches how to mobilise them. Hardly any home is barrier-free. Though there are side-walks for the roads, there is no slope at intersections, so wheelchairs cannot be manoeuvred into them. No one cares for zebra signs. There are no special facilities for the disabled.
On July 22, five people on wheelchair – one person with quadriplegia and four with paraplegia – got together with government officials, doctors and social activists to discuss how Trivandrum city can be made wheelchair friendly. The discussions were illuminating. We shall prepare the proceedings so that whatever is planned can be shared with the rest of India.
Big Strides Needed for Safer Steps: report by Archana Ravi in The New Indian Express
Action plan soon for wheelchair friendly city: report by The Times of India