my black folder (delhi summer illness 1)

Since i have lost much of the two months to an extended illness — and since my original reason for getting into public health was unsatisfactory doctor-patient relationships and inadequate assistance helping patients navigate hospital and health systems — it seems to make sense to write about observations and frustrations i had seeking treatment in delhi. i offer this up in the spirit of participant-observation research — not seeking sympathy but trying to point out what is currently not/working. i definitely welcome stories from others seeking health-care in india or elsewhere in the comments: this is a conversation that requires much more attention and probably research.

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There are three disclaimers. First, i am an extremely privileged patient in Delhi and attend one of the (arguably) best private hospital chains in town. So my case should be taken as something of a ‘best case’ in terms of how i am treated and my experience navigating the system. Second, being sick has made me incredibly grumpy. Third, we are still not entirely sure what i had/have. Given the on-going outbreak of chikungunya in Delhi and my symptom set, this is a plausible guess — but in full disclosure, the test for this and multiple other viruses were negative. While many people in Delhi seem satisfied with being diagnosed with ‘a viral,’ not knowing what i have is hugely frustrating.

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Whatever i have, ‘joint pain’ does not do justice to the experience — i have had what i would classify as joint aches or pains in the past and this weren’t it. Overnight-onset arthritis begins to get to the point: too painful to walk properly thanks to weak and angry feet, ankle & knee joints; too stiff and painful to make a fist around a bottle of water and elbows too weak to support the bottle anyway; etc. Suffice it to say, rapid aging it isn’t much fun:

giphyLC.gif

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While this whole illness narrative begins a month back, this blog’s story starts today, as i am preparing to go spend a bit of recovery time with my parents in TX and get a second opinion in the process. My mom is scouting for a rheumatologist there (thanks, mom!). She wondered if i could just have my doctor here in Delhi just fax over my notes so far (because the new doc wants to review them before accepting me?). Well, no.

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Which brings me to my black folder. There is no patient filing system that stays at the hospital for me here in Delhi, though i presume the hospital tracks some sort of information linked to my mobile number in the computers at which people are always tapping (they are very capable of sending via emails the status of my reports or texting to quiz me on my satisfaction).

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Each visit generates quite a bit of paper for which i am responsible, making me in a very tangible way the curator of my health history. i find this slightly stressful and, again, unlike a lot of patients, i can read and comprehend the vast majority of what is in my file (handwriting aside), can sort through and put it in date order, and so on.

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At a minimum in a visit to my hospital, there will be the consultation fee receipt, the consultation notes + script and the receipt for medicines purchased. But, likely, there will also be an additional receipt for diagnostic tests to be rendered and then, at some point, the results of that test, whether it is a printout, a scan, an xray, etc. i have to carry all of these. These papers should be ready at all times. For example, vital signs are recorded on my consultation receipt for imperfectly clear reasons. The receipt is then taken out of my possession (ack! i need to photo that for insurance claims!) to be laid before the doctor, who sometimes notes down my vitals on a fresh notepad before beginning the consultation scribbling. More paper.

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For awhile, one pretends that the soothing seafoam-green envelope proffered by the hospital/clinic along with one set of test results will suffice for the burgeoning ream of paper. But any sort of ongoing illness puts that rapidly to rest. Your makeshift, portable medical record is suddenly and literally coming apart at the seams when you have an extended illness episode, along with your feeling of being able to present your case to another doctor (or to the same doctor, since they have nothing else to which to refer back).

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Now i have upgraded fro a tattered folder to one of those report-type folders with the plastic sleeves built-in — the kind with a tab on each sleeve, which i have labelled with the month. Each month contains all the the august sleeve is pree-tty full but it is doing the job nevertheless. Mostly.

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Over the course of this illness, i have worked to keep everything as organized in this folder as possible as a way of imposing some order on the multiple visits, the multiplying symptoms, the confusing test results and their implications for yet more tests. When your fingers aren’t working properly (or more generally when you are feeling like crap), it isn’t very fun to sort through these papers and supple-ly sliding them into the slippery plastic sleeve. It also isn’t particularly fun to clutch this increasingly sweaty folder while you try to navigate your way through jostling patients, especially when your standard elbows-out strategy has been rendered impossible. Hospitals, as i contend in future posts and as others have said before me, aren’t very easy places to be sick. And, at least in Delhi, to be without a chaperone/Moses.

And, .

But one does carry one’s plastic folder to place before the doctor: see, i am a good patient. A conscientious patient. You can tell because my files are in order that i will probably try to follow your prescriptions and that i get what is going on here. And that this whole thing has been ‘going on’ far too long. We can both see that, right?

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i can’t pinch my fingers properly to pull the sheets out for you but here, this is the August sleeve. You can just pull them out and… sure, spread them all over the desk. Gah, this is the same feeling as when you had the immigration officer with your finger marking the visa page and they insist on closing the passport booklet and then casting you disgusted glances when s/he can’t find your visa. But worse.

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Yes, i could point(-ish) you to what you’re asking about… but rifling through will work eventually as well. Taking a call while you’re looking and while i’m sitting here will definitely help as well. Oh, you’re done? Then, sure, sweep everything back into a haphazard pile and then just… OK, bypass the plastic sleeve. Just close the cover over the whole mess. That’s cool. i just spent 3 minutes explaining how painful it was to work my fingers and i assume you were listening because you prescribed multiple blood-tests and several medications of questionable necessity. You even took notes. Including those notes, altogether, that’s four more pieces of paper i am going to acquire in the next hour. To add to that mess you just made of my medical history. To clutch-ish until i get home and then sort the whole damn thing again after the next painkiller to show the next half-interested doctor that i am a good patient, it’s just that the illness isn’t going away.

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Look, it’s all here in my folder. Dammit. The folder tied the whole thing together.

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14 thoughts on “my black folder (delhi summer illness 1)

  1. Aunt Janet says:

    Not to discourage you but the American medical system has all the same problems. And some Americans claim we have the best health care in the world.

    I already described to you my “rogue virus” experience. Claire could tell you about her medical problems of a few years ago. “We can’t get no satisfaction…”

    No medical professional looks at the whole picture anymore. Each specialist looks at only the numbers that apply to the specialty. So the patient is left searching the Internet trying to put it all together. Ask Sunny if his liver specialist noticed his high blood sugar numbers. When his diabetes was discovered by him and controlled, his liver numbers became normal. Ask my sister Joanne. Did the retina specialist notice her high eye pressure numbers? No, I told her to be checked for glaucoma, which she has, when I heard them.

    C’est la vie?????

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    • i agree, this is very much a ‘doctor’ problem and perhaps particularly ‘doctor-in-a-capitated-payment-system’ problem. it would be good if someone helped train doctors to better think about the implications of their suggestions — is 2 weeks rest even possible, e.g.?

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  2. sallyanne says:

    Heather I feel so bad for you. I strongly believe all patients need a surrogate . When one is so ill, it is hard to complete paperwork and search out alternative care etc etc. Simply the reason you need to come home. Your parents can then be your surrogates and support. love you 🙂

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    • thanks! home in a week. but, yes, as a more systemtic response, hospital systems need more surrogates available as well. many people have strong, local family support systems in india but hardly everyone.

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  3. Indrani says:

    Sounds very much like mononucleosis . I had it first few months I moved to TX. 3 doctors including ER failed to catch and kept pumping me with penicillin. EBR virus reacts to antibiotics and all the lymph glands on the body swell up and appear as nodules -clear give away for the virus. Hope you get better soon whatever it is!! Maybe we can catch up once you are here?

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    • it would be great to catch-up in the woodlands! i had mono when i was much younger — which i think lowers the chances that i’d get it again but, then again, i am quite lucky in that way. about a week after the severe pain started, i did suddenly get a full body rash, a fever, and my neck lymph glands were out in full force. so… it may be something else to check for! that said, i have heard (but have not confirmed) that mono does not thrive in india. perhaps you know more?

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  4. srandhawa says:

    Your article pointed out what has been frustrating for me as a patient too! The entire problem stems from a basic deficiency. Indian hospitals do not have an Electronic Medical Record System like the US. The problem is funds. Computers do not make up any part of our training at all during medical school. This is because the govt medical colleges we are trained in do not have the funds for the same. Getting basic medical equipment is the first priority. So when doctors leave medical school and start practicing in big private hospitals like Max, which have the infrastructure for an EMR system, they still do not implement or follow it because it is alien to them.

    Here is my perspective as an Indian doc having been exposed to American systems. EMR systems are a basic necessity and hospitals and doctors don’t get it here partly because medical practice is still individual doctor oriented rather than hospital systems oriented as in the US. Second problem is funds. Barring the big private hospitals, the others just don’t have the money for basic things, let alone computers and staff to maintain and train people.

    Here is something that frustrated me about EMR systems in the US. When i went to Cornell, i had to train for a few weeks to understand how their EMR system worked. Then, when I reached UAB, it was back to square one coz UAB had a totally different EMR system. Well, thats the physician perspective. From a patients perspective, if you consulted a doctor under one health system in the US and then went over to the other doc in another health system, your patient records will not be transmitted electronically because:
    1)no centralized EMR system in place all over the country
    2) HIPAA loopholes
    So patients have to ask their physicians to send their records over and when a patient would be coming to UAB from elsewhere we would receive bundles of paperwork and no easy way of going through it on a computer or electronically coz there just is no provision. The more I asked questions as to why there wasnt a uniform single EMR system across the country, the answer was simple- EMR companies have vested interested as do hospitals systems that helps them financially in keeping closed systems.

    Ultimately the patient suffers. Here it is way worse than abroad. My maid’s husband went to the same hospital in two separate visits to get the exact same test done just because he did not carry his old consultation record along. Ridiculous and unacceptable! Here is a poor man taking days off from work to go visit a doctor and he is being penalised just because of something that should be the doctor/hospital’s responsibility. I wish hospitals and the medical schools here be shown the futility, drawbacks and the economics of compromising on training and implementing EMR systems.

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    • Thank you so much for sharing! it’s great to have the perspective of someone who has studied & practiced in both the US and India!!! The story about your maid’s husband is upsetting — it is really hard to keep track of all of those papers!!!!

      It does seem like in India, the rise of digital identity may offer a way forward, thought i don’t know how this would interact with HIPPA? Or, admittedly, if HIPPA in India (or a counterpart) functions similarly?

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    • thanks RS! the point is really, though, that lots of people having chikungunya right now and probably aren’t having a better time of it. the systems needs to change to really accommodate (sick) people.

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