A decade, and still counting

A life lived shuttling between hospitals - and between remission and recurrence

shivani

Shivani Chaturvedi | March 23, 2010




With tears in his eyes Bahadur Ram is packing his bag and getting ready to step out from the All India Institute of Medical Sciences (AIIMS). Alongwith him are Babita his daughter, Ram Narayan his son-in-law and Bijya Devi his wife. The 54 year old Bijya is lying on the stretcher outside the OPD suspected of cancer. But the AIIMS doctors have perhaps not been able to detect the ailment.

“We have been running from one government hospital to the other but none of the hospital authorities have been able to give us any satisfactory reply. We came to India's premier hospital thinking that the ailment would be detected and treatment would be carried out accordingly. But what’s the use of coming here when the doctors are not even able to know the cause of suffering of my wife,” said Bahadur.

For the past 20 days Bijya is being brought to the AIIMS in the hope that some miracle occurs and the ailment from which she is suffering since 10 years gets cured or at least Bijya could get the best treatment. “She is having acute stomach ache and also suffering from some urinary infection. The day before, she vomitted blood. The doctors asked to get CT scan from outside the hospital saying that it will take lesser time. But that was costing us Rs 8000 and we do not have so much money. So we got the scanning done at the AIIMS itself. We were also asked to buy the medicines from chemist shop outside the hospital,” said Bahadur who works as guard in some company and lives in a jhuggi in Mayapuri.

And when the CT scan reports came, the doctors replied that they were unable to detect the disease.

Since 2000, Bijya was undertreatment at some other government hospital in the city. There the doctors gave her radiation cancer treatment. Bijya got relief for the time being. But gradually her condition started declining. The doctors then referred Bijya to the AIIMS saying that symptoms of cancer have reoccurred and that they cannot do anything now.  

Bijya was then taken to the AIIMS but here too nothing really happened that could bring some relief to the family. “The doctors said due to radiation treatment it is getting difficult to detect which kind of cancer has reoccurred,” said Ram Narayan.

Bijya’s family is again planning to take here to the same government hospital where she was undertreatment for 10 years.

This is the last report in our series on the travails of patients at the AIIMS. (The first, second, third, fourth and the fifth reports are reproduced below) Have you faced trouble at this hospital? Do you know somebody who did and wish to share that with other readers? Please write in at feedback@governancenow.com.

Buying breaths, counting days

Health is wealth, or so goes the old adage. For this patient, cure and not health, comes at great costs.

Ramvati, 42, is a follow-up patient at AIIMS for over a year now. Every month she comes here from Balamgarh, Haryana, for a check-up. The doctors tell her that for the pain in her kidneys, she needs to get a dialysis.

“I have been taking medicines for a year now. But the pain hasn’t subsided,” she said.

Her medicines for a month cost more than Rs 3,000. “One strip of tablets costs Rs 700. For one month I buy two such strips,” she said.

Her 21-year-old son Kishan is the sole earner in the family who brings home Rs 4,200 a month. He works with a bus construction company and most of his earnings are spent on his mother’s medicines.

“My husband cannot work. Though he earns anywhere between Rs 50 and 100 on days he finds work, he mostly stays unwell due to old age,” said Ramvati.

Meanwhile, her son comes back to the AIIMS OPD where Ramvati is sitting on the floor with her sister-in-law. They open the food packet and Kishan starts tallying the names of the medicine strips with those written on the prescription.

Neither Ramvati nor her son is aware of the various schemes under which the patients who are not financially well-off can avail benefits. For every trip to the hospital, they spend Rs 200 only on travelling.

Despite availing treatment for over a year which has not brought her any relief, Ramvati’s trust on the institute is undeterred. She says, “AIIMS is the biggest hospital in the country. If the doctors here can’t treat me, where else will I go? I still trust AIIMS doctors.”

This is the fifth report in our series on the travails of patients at the AIIMS. (The first, second, third and fourth reports are reproduced below) Have you faced trouble at this hospital? Do you know somebody who did and wish to share that with other readers? Please write in at feedback@governancenow.com.

All that can be done

A patient's family waits for a bed, waits for a diagnosis and waits for some succour

Sushil Panwar, 45, is lying on a stretcher at the  Raj Kumari Amrit Kaur OPD in the All India Institute of Medical Sciences (AIIMS), whimpering. Pain wracks his body as he lies there, not able to move even his neck. And this Wednesday he vomited blood.

Panwar's family and other relatives stand by his side helplessly, not knowing what his disease has left their loved one thus. To add to their anguish, the doctors, as Panwar's nephew Arun says, have asked them to take him home as they have done all they coould do - for now, at least.

“About 20 to 22 medical tests have been conducted but no reports have been given. We even have got a biopsy conducted. The doctors aren’t saying anything. They are not even ready to start any treatment,” says Arun sitting besides his uncle on a wooden bench placed in the OPD. Alongwith him are two other relatives cursing the doctors who they assume are, for the better, unperturbed, or for the worse, unmoved.

Sushil is lying here since March 8. He has been brought to the AIIMS for treatment all the way from Saharanpur. For the past two months Sushil has been bed-ridden. “We came here so that he can get the best treatment but we are just being referred from one doctor to the other. No medical reports, no treatment, no medicine and no doctor for us,” said Arun.

From the first day itself, the Panwars have been spending almost Rs 7500 on each test. Moreover, due to unavailability of bed in dharamshala at the AIIMS, they have booked a room in a nearby guest house which again is heavy on their pockets.  Finding it hard to bear the expenses, two days back Panwars decided to go to Saharanpur for a day or two as the doctors had already asked them to come later after conducting medical examinations. But on Thursday noon Sushil started vomiting blood. He was rushed to the AIIMS. By evening they were in the AIIMS. Sushil was taken to the emergency. He was given an  injection and after two hours the doctors told the patient’s attendants that they can now take him home and that they have done their job.

But Arun and other relatives of Sushil are still sitting in the OPD trying to get the patient admitted.

AIIMS Medical Superintendent D.K. Sharma said, “Depending on availability of beds in the emergency we admit the patient. Otherwise, the patient’s condition is stabilised in the emergency and he is referred to other hospital. In this case similar situation might have occurred.”  Further, for patients and their attendants even a minor thing appears to be serious. But objective evaluation is done by doctors and advice is given to patients accordingly, added Sharma.

This is the fourth report in our series on the travails of patients at the AIIMS. (The first, second and third reports are reproduced below) Have you faced trouble at this hospital? Do you know somebody who did and wish to share that with other readers? Please write in at feedback@governancenow.com.

An early realisation, perhaps

Patient tries his luck elsewhere after lying outside OPD for two-and-a-half months

Three days after 84-year old Roshanlal brought his son, Bharati, to the country’s most premier hospital, AIIMS, he is still not clear why his son cannot eat anymore.

Setting ground outside AIIMS OPD is another family, amongst several others, which has come from Atrauli village in Aligarh, Uttar Pradesh. After two-and-a-half months of visiting doctors in their home town, 25-year-old Bharati’s condition did not improve.

“He has pain around his navel. Gradually he stopped eating and now he cannot even drink water,” said Birendra, Roshanlal’s neighbour who has come to Delhi to help the family.

Bharati slept cuddled on a thin mattress under the shade of a bed sheet which was tied by four corners to the railings on either side of the pavement. His dark eyes and sunk-in cheeks prominent. The clothes he was wearing appeared too big for his bony body.

Both Bharati and Roshanlal are daily wage labourers. With little to save, Roshanlal has already spent over Rs 40,000 on his son’s treatment. “Living here is proving to be very expensive. We had to spend Rs 2,000 on a taxi to bring him here,” he said sitting at his son’s feet. “We have been spending Rs 25 for two chapattis and little rice per meal,” he added.

Bharati’s sister, wife and three neighbours sat next to him; his wife’s face covered with the saree.

“The doctors are saying they will admit him after four days. They did not examine him even once,” said Birendra.

AIIMS Medical Superintendent D. K. Sharma said, “For OPD, there is a limit on the number of patients a doctor can see at a time. The patients who are follow-up cases cannot be refused so we have to keep a limit on the number of new cases a doctor can take up.”

Meanwhile, Birendra mentioned that they checked the dharamshala but there were no beds available.

Two weeks later, there was no bed sheet tied to the railings. Roshanlal and his family could not be spotted anywhere.

“They moved to Safdarjung hospital,” said one of the many living on the pavement there.

This is the third report in our series on the travails of patients at the AIIMS. (The first and second reports are reproduced below) Have you faced trouble at this hospital? Do you know somebody who did and wish to share that with other readers? Please write in at feedback@governancenow.com.

Unhealthy AIIMS

A cancer patient lies on a stetcher next to a dustbin outside the AIIMS OPD for two months

Rukhsana Khatoon has been living on a stretcher for over two months now. Her stretcher is parked behind an ambulance and next to a dustbin outside the OPD of the All India Institute of Medical Sciences (AIIMS). The urine pouch hangs on a beam of the stretcher and a black and white woolen blanket is drawn till her waist.

Rukhsana is 37 years old, a mother of two and a multiple-organ cancer patient. When the doctors in her hometown of Panipat could not treat her, her brother brought her to Delhi. She was first taken to the Guru Teg Bahadur hospital from where she was referred to the AIIMS, India's premier hospital in public sector.

“AIIMS has not admitted her yet. The doctors started her cancer medicines just two weeks ago. Before that they kept giving her pain killers,” says Rukhsana’s brother who does not wish to be named.

Her six-year-old son and 16-year-old married daughter sit with their uncle on a mat spread on the pavement.
“Her husband is epileptic and cannot even take care of himself. Where will these children go if their mother also dies?” says her brother.

The family has already spent Rs 70,000 on the tests the doctors asked them to get done again. Rukhsana’s brother unfolds two pharmacy bills, one for Rs 500 and the other for Rs 750.

“We have spent so much money already on tests that had already been done once. Now finally when the treatment has started, it is too late. The cancer has spread to other parts of the body. We have no money left. On top of all that, the guards keep shifting us from the pavement,” says her brother. “We are thinking of going home,” he adds leaning against a red wall.

Meanwhile, Rukhsana lay peacefully on the stretcher a few feet away from her family, her back towards them, oblivious of the eyes watching her.

This is the second report in our series on the travails of patients at the AIIMS. (The first report is reproduced below) Have you faced trouble at this hospital? Do you know somebody who did and wish to share that with other readers? Please write in at feedback@governancenow.com.

Looking for a bed in AIIMS? You are not really serious, are you?
Heart-wrenching story of a cancer patient, one of the many spending days and nights on footpaths outside India's premier hospital

A thin, torn blanket over a plastic sheet is spread on the pavement outside AIIMS OPD. Among the travel bags, folded bed sheets and CT scan reports lay five-year-old Shyamali. A big lump on the left side of her forehead is the reason she lay still on the mat, staring at nothing in the sky.

Shyamali has brain tumor and she has spent more than 12 weeks shifting from the hard floor of the pavement and her mother’s arms.

“The doctors refuse to admit her. They do not operate on her,” cries Usha Devi, her mother.

Mukesh Singh, Shyamali’s father who is a farmer, came to AIIMS after the doctors at his home town, Matiyari district in Bihar, refused to treat his daughter.

He has spent over a lakh on medical tests, sold two out of five acre land he owned in his village and feels that coming to Delhi was the biggest mistake he ever made in his life.

“Over 20 doctors must have examined her. They recommend tests after tests but are still not clear how to cure her. She is in terrible pain,” said Mukesh.

Without a sound, Shyamali shuts her eyes tight and opens her mouth in pain when her mother tries to open her left hand which has turned inwards in a fist. The stony expression on Shyamali’s face returns in no time as her mother gives up the effort.

“Her left hand and foot stays bent all the time. She trembles in pain throughout the day and night. People who see her everyday here on the pavement know what she is going through,” said Usha Devi.

Shyamali was given glucose through drip only once in these three months, the blue marks of the needle still fresh on her hand.

Shyamali’s mother put a syringe without a needle filled with watermelon juice in her mouth and pushed the plunger. The contents of the barrel filled Shyamali’s mouth and dripped from one corner.

“She has stopped eating now. She cannot swallow even a sip of water,” mumbled Shyamali’s grandmother lifting Shyamali’s vest, revealing her sunk-in stomach.

“I do not know what my daughter is suffering from that these doctors cannot treat. I tell them to operate on her and remove the tumor. They say she is too young. They keep giving us a later date. Why don’t they give us a clear answer? Whether they operate on her and she dies or she dies without any treatment, she is our daughter. What do they have to lose?,” said Usha Devi.

With already spending Rs.500 a day, they cannot afford a room in any of the dharamshalas at AIIMS. The authorities there ask for Rs.1200 a month.

“We have to pay money for using the toilet, for washing clothes and for bathing. We cannot cook and have to buy food every time. Now all we can do is sell ourselves,” said Usha Devi.

Mukesh has started looking for work around the hospital. He has filled up a form for a constructer worker’s job at Delhi Metro’s construction site outside AIIMS but has got no response from them.

Meanwhile, the medical superintendent at AIIMS, D.K. Sharma says, “The dharamshalas we have are more or less free of cost.” He adds, “We have limited number of beds. We have a waiting list and allot the beds as soon as they go vacant but we do not refuse to admit patients. We definitely give priority to serious cases.”

“My mother-in-law has come from the village. We called her here. We do not know for how long we’ll have Shyamali with us,” said Usha Devi caressing her five-year-old daughter in her arms.

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