Hit Hard

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Without phones, internet and transport, thousands of seriously ailing patients were the silent sufferers of the post-August lockdown, reports Aaqib Hyder

CRPF checking the medical documents of a woman during restrictions in old city of Srinagar. KL Image by Bilal Bahadur

CRPF checking the medical documents of a woman during restrictions in old city of Srinagar. KL Image by Bilal Bahadur

When Sara Begum, 58, a resident of Kreeri (Baramulla) complained of extreme headache, nausea and dizziness, her husband expected the worst. She had skipped her twice-a-day hypertension pills because the drug was out of stock locally. Lack of transport prevented the family from fetching the same from the nearest chemist, living 6 km away.

Begum is a chronic hypertension patient with several other disorders which ultimately lead to kidney failure. She is on multiple medications for the last many years.

It was late evening and wait was the only option. “I am not rich enough to own a car and asking a neighbour or relative to lend transport seemed inappropriate as there was a lot of risk,” Sara’s husband, Ahmad said, giving his second name only.

Next morning, after walking for half a dozen kilometres, the couple reached a hospital. Immediately, she was referred to SKIMS. Referring patients suffering from small ailments is a general practice in rural healthcare as the hospitals invariably lack basic facilities. “It is another tragedy that we have to go all the way to Srinagar to treat minor ailments. It makes the ailment worse,” Ahmad said

Since the public transport was off the roads (it is now resuming), the couple lacked the option of getting any help from home. There was no way to even communicate back home as the phone services were switched off. After switching multiple rides, they somehow managed to reach Srinagar. When they reached SKIMS Soura, Begum’s condition had worsened. Her blood pressure had skyrocketing and she was barely conscious and getting delirious.

“Her blood pressure was 240/120 which is alarmingly high and we were just wondering how is she even alive,” the doctor on duty, who attended her, said wishing not to be named. “Situations like this are very rare.”

After half a dozen pills and injections, the doctors were able to get her blood pressure out of the danger limit. Doctors retained her for an overnight observation, scheduled her for a kidney check-up and discharged her.  She didn’t show up for the appointment, later.

“I wonder if she is even alive now,” the doctor said. “It is sad that in today’s time when people around the world are improving the already sophisticated patient care, people have to struggle for the very basic things here.”

Hundreds of patients, mostly rural, are suffering on daily basis due to non-availability of public transport, communication gag, though partially restored and internet blockade. A large number of patients who were getting online consultations, counselling and treatment from non-local or overseas doctors are in a state of fix since August 5.

Mohammad Maqbool, 51, who is fighting several psychiatric disorders for the last four years, was getting regular treatment from a British psychiatrist through online counselling sessions. In last one year, he was very responsive to the treatment and had recovered considerably. The internet gag since August has pushed him back.

“My father was totally cut off from his doctor for more than three months,” Junaid, his elder son, said. “After missing several weekly counselling sessions, he turned violent and stopped eating altogether. He skipped meals for five days in one go.”

Growing weaker and violent, the family decided to take him to a hospital or visit a doctor, but he refused that too. “We had to sedate him before taking him to a hospital where he was admitted and eventually stabilized. There was no other way. It was family’s worst nightmare,” Junaid said.

In psychiatric cases, the doctor-patient familiarity is a difficult relation to evolve. Patient takes a lot of time to repose his trust into doctor. Changing the relationship is very difficult and time consuming. Patients like Maqbool are having a tough time in contacting doctors, ordering medicines and getting tests done online. As a new doctor is now treating his father, Junaid keeps his fingers crossed.

Things were no different for Ifra Jan, 13, a resident of Bijbehara, who has been suffering from kidney failure for last two years. In the wake of abrogation of Article 370, she missed two dialysis appointments. As she started showing worrying symptoms, her mother took her along and they trekked around 12 kms to reach a dialysis centre in Janglat Mandi, Anantnag.

“I couldn’t watch my kid suffer anymore,” Jan’s mother, Shakeela said. “Our feet were swollen and aching but at least she got the dialysis before her condition would have gotten out of hand.”

Despite getting a lift from a private vehicle on their way back home, Jan fell ill for a week complaining of pain in legs all along. Moreover, getting medicines for Jan has been quite difficult for her mother. Jan’s father, family’s sole bread winner, is a professional labourer who had no work. They are already in dire straits, financially.

“Last three months were extremely difficult for us. We often borrowed money from relatives and friends to buy medicines and other things for Ifra, but we can’t do that forever,” Shakeela said.

Under Ayushman Bharat Scheme, financially weak patients, admitted in a state-run hospital get a special card ‘Golden card’ which helps them get free medicines and diagnostic tests done worth Rs 1980, a day. Most of the beneficiaries of the scheme are critical care patients who need dialysis, therapies and costly treatments and tests on a frequent basis. Moreover, cancer patients in particular can even get reimbursed for costly surgeries through golden cards. The scheme almost covers every cost of critical care patients.

“I need three dialysis a week and a number of medicines which could cost me an unaffordable amount on a regular basis,” Abdul Aziz, who is suffering from kidney failure, said. “Golden card was the only reason that kept me from borrowing from others,” he said while heaving a deep sigh.

Unfortunately, the card works only with an active internet connection. Government has now started registration of Ayushman beneficiaries’ offline from early October but beneficiaries maintain that there was no such provision for first few months. They said that the offline paperwork has added to their inconvenience and everyone is not able to avail the service. With internet services still down for more than three months now, patients say that they are unable to avail the service smoothly like they used to during free internet access.

“For first few months, there was no offline registration for any patient. Despite having limited resources we had to go for paid treatment,” Aziz said while waiting for his turn outside dialysis unit in SKIMS. “We had to manage money at a time when everything was under lockdown for months.”

When contacted, an official working for Ayushman Bharat scheme admitted that for first two months the key health scheme was defunct. He, however, claimed that the patient suffering was put to an end by starting offline registration.

“We started the offline registration of Ayushman beneficiaries from early October and patients are availing it now. Now patients have to go through some paperwork instead of online mode but at least they are getting the benefits of scheme now,” an Ayushman Bharat official at SHMS hospital, said. “Although the flow of patients that come to avail the health scheme has reduced marginally due to the prevailing situation but we are working very hard to reach every patient in need.”

Although post-paid connections were restored on October 14, patient-doctor and doctor-doctor communications are still affected badly resulting in a lot of problems, at times possibilities of fatal damage. The fact that people were unable to call for emergency help or ambulance for months, reflects how bad the situation is as far as patient care is concerned. More than three months on, there is no promising hope of normalcy in sight.

(Some names have been changed on request.)

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