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Role of patient support groups

Sometimes when all else fails, hearing it from the horse's mouth might be more convincing. Patient support groups are all about that actually – hearing about it from the person who has seen it, and more importantly, felt it all.
Whether it is prevention, making the choice of treatment, handling stress and emotional disturbances in the family, lifestyle modifications, honest and frank advice from a patient who has survived a similar condition is valuable. “In certain chronic conditions, patients will undergo tremendous stress and will often be undecided what to do next. They may speak with their specialist for one hour and still remain confused. But a mere 15-minute discussion with a survivor will make a difference,” says S. M. Chandramohan, head, Surgical Gastroenterology, Rajiv Gandhi Government General Hospital.
“We have cancer survivors, and their family members, who act as ambassadors, not just for the disease or treatment, but also about how to live on,” he adds.
Patients who had consumed acid spoke at a Suicide Prevention Day meeting in the city of the immense torture they had undergone. Never do this, the volunteers told a rapt audience comprising largely of students. Their services also come in handy when such patients, post-surgery, have to be taught how to use the feeding tube. Another instance where counselling is of immense value is in cases of a stoma – which requires a bag (for collecting motion) is to be worn outside the body. Patients think this is not worth it, that they would rather die than wear a bag, Dr. Chandramohan says.
Rama Ranganathan is a patient support group member who helps in such circumstances. Having had the procedure done years ago, she advises patients who think so, that wearing the bag is not a problem at all. “People sink into depression when they hear the news. This is when we tell them honestly, without misguiding them, about the process involved. I tell them truthfully that life is comfortable post-surgery,” she says. MOHAN Foundation was among the first few non-governmental organisations to start a support group for patients with kidney disease, and later, expanded that to include organ donation as well. The idea is to get patients talk to others about the need for dialysis, organ failure, transplantation, life after transplant, the need to adhere to the anti-rejection drug prescriptions, and to empower patients to demand for facilities, explains Sunil Shroff, of the Foundation.
Recently games were held for transplant patients, and occasions such as that are a morale booster for people who have just slipped into kidney failure or are waiting for transplantation, he says. Dr. Shroff adds, “It demonstrates how good life can be after transplantation.” 

Source - http://www.thehindu.com/news/cities/Chennai/article2013319.ece

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