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Tuberculosis and DOTS

Tuberculosis and DOTS

For decades, the country has been striving towards decreasing the burden of Tuberculosis (TB) on its population. The introduction of Directly Observed Treatment Strategy (DOTS) through the Revised National Tuberculosis Control Program (RNTCP) was expected to bring about a major change in controlling the disease. In spite of many efforts, the indicators of TB fail to impress. Failure of adherence to the DOTS program and discontinuation of the treatment is attributed as an important cause for the current state of the disease. Linda, a friend of ours describes her experience with Tuberculosis, DOTS program and importance of completing the treatment.

Government of India DOTS Program

I was down with typhoid in March 2011. During that time I noticed a swelling below my jaw, towards the left side. The swelling did not subside even after a couple of weeks.  It was diagnosed to be lymphocytes, that is TB of the lymph nodes. A particular physician advised me to get the lump removed surgically. In fact the surgery was fixed for the next day. Then the doctors at Institute of Public Health (IPH), Bangalore referred me to another doctor for second opinion. The second doctor advised me to start TB medicines under Government of India DOTS Program. So I went and got myself registered for the program in Primary Health Unit in Cox Town, Bangalore. The staff their immediately started me on medicines and assigned me to a Social Health worker close to my house. A box containing the medicines of my full course was given to the health worker. I had to go regularly to her and pick up my medicines. She wrote my name on the box and kept a complete record of the medicines issued.

Initially when started my medicines I started feeling very weak and had severe pain and tingling sensation all over the lower part of my body mostly my legs. The pain was so severe I could not even move about. The swelling also increased rapidly and I was losing weight rapidly. I was feeling really frustrated and depressed. The doctors at IPH counseled me regularly and encouraged me to continue the course. My husband and my son also were very supportive. After a couple of months the swelling started reducing. I started feeling normal and started gaining weight. I still have 5 more weeks of treatment. I feel perfectly normal and have no swelling at all.

I would like to stress that the Government DOTS Program is most effective.  I would advise people with TB to go undergo Government DOTS Program and not to private practitioners. The quality of the medicines is excellent although it is completely free of cost. I would also like to add here that to bounce back to good health, one needs to complete the entire DOTS course.

 

–          LINDA DANIEL

 

Tuberculosis and DOTS

Several Ganeshas – One platform?

Forest department officials at task to ensure uninterrupted GANESHA procession

Forest department officials at task to ensure uninterrupted GANESHA procession

The last month had been Ramadan, and many practitioners of the Islamic faith could not make it to the meeting. Now it was the turn of Ganesha, that ‘remover of all obstacles’ and what we had not forseen, was that today the idols would be taken in a procession to the nearby lake for ‘immersion’. Entry into the area found forest department staff pruning the gulmohars in front of KG Halli police station in preparation for the large trucks that would pass in the evening. A fairly skilled task, made more challenging by the continuous traffic that passes beneath.  Was this, one wondered, the BBMP team involved in the environmental health of the area?

Quite startling were the number of Ganesha idols on the main Tannery road- at least seven 12-14 foot idols with music systems in trucks; each with more than a dozen speakers piled on and blaring music at mind boggling decibels. Another potential area of intervention for environmental health? There was clearly a competitive streak with the traditional ‘aarthi’ vying with Kannada, English and of course Bollywood’s latest – “Sheela ki jawani” ! Noticeably absent were people, these main- road idols seemed to the viewer /listener to provide entertainment to passers-by.

A woman attempting to calm drunken men with a bucket of water

A woman attempting to calm drunken men with a bucket of water

Entering the side road to the Centre we found three smaller pandals , put up by families or groups; again providing music at ear shattering decibels. So we shut all doors and windows in order to hear each other (and the doctors we were trying to call on the phone) and conceded the choice of the day had been a mistake. But every time a balcony door opened we were inevitably drawn to the drama unfolding outside in the corners of the street. In one pandal, men were dancing, inebriated, uninhibited and to the embarrassment of their womenfolk. Three policemen on duty sat comfortably in chairs to the side of the pandal and watched indifferently as a woman brought a bucket of water and doused her husband in an effort to stop the display. A child was caught in the circle of dancing men and had to be pulled out, crying bitterly. Finally when a passing scooter was halted and the driver heckled, the batons came into view and raised voices were heard. At this point a CHA said “This is how the fights start, last year a man lost his hand in the brawl !” Yet 20 feet down the road, the dancing young children emitted a completely different energy, exuberance with the innocence of childhood. Everywhere, the boys danced. One wondered if the girls wanted to.

IPH team and health providers in KG Halli at a meeting

IPH team and health providers in KG Halli at a meeting

Meanwhile we strategized and waited. And after numerous phone calls , four private providers braved the  chaos on the roads,  and came to the meeting. Four more would have come, but they stayed back to treat injuries or could not come through the procession. We tried the government facilities, both had emptied of staff by midday, as transport to go home would be a nightmare. Again, despite the numbers being few, we were struck by the interest and attention these practitioners displayed to the sharing from the IPH team. The CHAs were already sounding more confident and interestingly, this time they spoke in the Dakkhini- Urdu so typical of the area! As we got a chance to interact closely with the providers, we were also able to assess individually, the probable areas of interaction that they might involve themselves in. From describing the state of the bakeries using child labour in the Vibhuthipura area to offering to help with Urdu translations of appropriate health messages, it was clear from the exchanges that the practitioners are not limiting themselves to treating colds and coughs, or examining lungs and livers. There was also the interest in the centre, how it runs and where collaboration in following up with government departments might be useful.

Luckily the Ganesha in “our” lane was sent on his journey to the waters by 2.30pm, so the meeting was conducted in relative peace. By the time we wound up and travelled home it was later than usual, the mind filled with jumbled images linked to health …….alcohol and stress , gender, the role of ritual in social inclusion, youth and political dynamics in the urban settings, being some of them.

On the ground, yet another step had been taken towards the elusive platform for ward no 30.

The end to a challenge and a new beginning for urban health Team!!

Call it the light at the end of the tunnel, or the pure relief that comes when the hoped-for, unexpected unfolds; but the urban health team experienced the adrenaline rush that goes with all this on August 8th at KG Halli’s community centre as we gathered for the first meeting with the health providers in the ward.

As the community links have strengthened over time, the household survey has moved steadily and imperceptibly into home visits, and contacts with schools and sanghas have regularised. The challenge was now to rope in the doctors in the area, both public and private providers on whom the 40 thousand odd people living there depend on for their health needs. Our initial meetings had revealed around 25 practitioners in the clinics and 4 hospitals, with a wide range of training from Allopathy to Ayurveda to Unani, and including alternative healers using natural remedies, a physiotherapist and counsellor.

Over the last two weeks we had met most of these practitioners and explained the direction our research was taking. We also invited them for a meeting at the community centre in Vinobhanagar, at the heart of ward no 30. Interestingly, we received no negative response; everyone said they would try to come, and the time was fixed for 3pm-4pm, as best suited the doctors. This, despite the fact that the fasting of Roza has begun for the predominantly Muslim community.

At the IPH  end, now started fairly intense preparations for this event. For the team it was the first time we were trying to explain our work to the doctor community. Even for the public health specialist, “action research” needs explanation, and the “platform” sounded nebulous to our own ears as we rehearsed. But the process of preparing for this meeting was such a joy and a challenge. Upen had put the skeleton of the survey results onto powerpoint, but as we progressed, discussing what we wanted to convey to the audience, the presentation came together. The red thread was kept tight by Thriveni , little details came from Amrutha , I brought in  a story for perspective  and Antu, Nagaratna, Leelavathi and Josephine brought the raw power of their field experiences, which we practised to a polished 30 minutes.

Munna came in with all the arrangements for the meeting (including the photo credits!) and by 2.30 pm we were awaiting our guests. We had already swallowed our disappointment when, over the weekend, our good friend and colleague from the UHC, Dr. Anantalakshmi had informed us that she had been transferred and could not attend. The other government centre, the CHC had also a prescheduled meeting, but Upen and I decided to make one last effort to meet Dr. Mangala, the doctor in charge. We were richly rewarded in that a young doctor Dr. Shweta was deputed to come, overcame her reservations and arrived at the meeting.

At this point, between 3 and 3.20 pm I must confess to having kittens, as we waited ….and waited….and waited. But soon, they started trickling in and by 4 pm we had seven guests, seated comfortably on the mats, and we closed the door on the pouring rain flooding the balcony, and started to share. It was remarkable how intense the meeting was, how carefully the practitioners listed to the team’s findings, and towards the end, how interactive the session became. The community workers voices had that note of passion and truth and their confidence had the audience listening. Equally remarkable were the guests, from the wisdom and hope of  Dr. Aftab , to the clinical expertise of Dr. Kulkarni, the participation was complete. Dr. Shweta stayed on well past her working hours with great attention and interest, her husband who came to pick her up was kind enough to wait until past 5 pm.  The presentation had focused on the findings of the survey, but the discussion took off, and as someone commented, we were all on the same page………….improving health care, concern for the poorest, how to share expertise and resources………..these were the topics around which the talk revolved.

Some very encouraging quotes from both the meeting and the IPH debrief later, may give you a sense of what transpired.

… “ I never thought it would happen at 3 pm……….but the meeting was much better than expected”

…. “ Even if few people came, it gave us the chance to get to know them and talk with ease”

…. “ Now that we know we have all these resources available , we can actually make health care happen for the community”

….. “ We must have meetings  like this every month, they are very informative”

….. “ It was a suuuper meeting!!”

….. “ There is lots of work ahead , but that was the point of all this, is it not?”

So where do we stand today? Surely able to answer our colleagues who have been asking with understandable impatience “Will you ever get a platform?”….in the affirmative. And ready to take the first step which is always the beginning of every journey, however long.

-Roopa Devadasan

ಬದಲಾವಣೆಗೆ ನಿಲುಕದ ಅ೦ಗನವಾಡಿ ಟೀಚರ್

ವಾರ್ಡ ಸ೦ಖ್ಯೆ ೩೦ರಲ್ಲಿ ನಾವು ಸುಮಾರು ಎರಡು ವರುಷಗಳಿ೦ದ ಕೆಲ್ಸ ಮಾಡುತ್ತಿದ್ದೇವೆ, ನಮ್ಮ ಗುರಿ ಸಮುದಾಯದ ಆರೋಗ್ಯದಲ್ಲಿ ಗುಣಮಟ್ಟ ತರುವುದಾಗಿದೆ. ಈ ವಾರ್ಡನಲ್ಲಿ ಭಾರತಮಾತ ಸ್ಲ೦ ಇದೆ, ಅಲ್ಲಿ ಒ೦ದು ಅ೦ಗನವಾಡಿ ಸಹ ಇದೆ. . ನಾವು ಕೆಲಸ ಮಾಡುವ ಸ೦ದರ್ಭದಲ್ಲಿ ಆ ಅ೦ಗನವಾಡಿಯು ಸರಿಯಾಗಿ ಕೆಲಸ ಮಾಡುತ್ತಿಲ್ಲ ಎ೦ದು ಗೊತ್ತಾಯಿತು.ಮಕ್ಕಳು ಸಹ ಆ ಕೇ೦ದ್ರಕ್ಕೆ ಸರಿಯಾಗಿ ಬರುತ್ತಿರಲ್ಲಿಲ್ಲ, ಬದಲಾಗಿ ಅಲ್ಲೆ ಪಕ್ಕದಲ್ಲೆ ಗ್ರೇಸ್ ಸ೦ಸ್ಥೆ ನಡೆಸುತ್ತಿದ್ದ ಅ೦ಗನವಾಡಿಗೆ ಮಕ್ಕಳು ಹೋಗುತ್ತಿದ್ದರು.  ಅ೦ಗನವಾಡಿ ಸಹಾಯಕಿ, ಅ೦ಗನವಾಡಿ ತೆರದು ನ೦ತರ ಅಕ್ಕಪಕ್ಕದಲ್ಲಿ ಮಾತನಾಡುತಾ ಕಾಲ ಕಳೆಯುತಿದ್ದರೆ, ಟೀಚರು ಸುಮಾರು ೧೧.೩೦ಕ್ಕೆ ಬ೦ದು ಶಾಲಾಪೂರ್ವ ಚಟುವಟಿಕೆಯನ್ನು ಮಾಡದೆ ಕೇವಲ ದಾಖಲಾತಿಗಳನ್ನು ಬರೆದು ಮನೆಗೆ ಹೋಗುತ್ತಿದ್ದರು. ಮಕ್ಕಳಿಗಾಗಲಿ, ಗರ್ಭಿಣಿಯರಿಗಾಗಲಿ ಪೌಷ್ಟಿಕ ಆಹಾರಗಳನ್ನು ಸಹ ಕೊಡುತ್ತಿರಲ್ಲಿಲ್ಲ. ಅ೦ಗನವಾಡಿಯ ಪಕ್ಕದಲ್ಲೆ ಕಸಕಡ್ಡಿ ತ೦ದು ಹಾಕುತ್ತಿದ್ದರು ಅದಕ್ಕೆ ಏನು ಕ್ರಮ ತೆಗದುಕೊ೦ಡಿಲ್ಲ. ಅ೦ಗನವಾಡಿಯೊಳಗೆ ಇರುವ ಆಹಾರಗಳು ಹೆಗ್ಣಗಳ ಪಾಲಾಗುತ್ತಿತ್ತು.

ಅ೦ಗನವಾಡಿಯು ಸಮುದಾಯದ ಅವಶ್ಯಕ ಸೌಲಭ್ಯವೆ೦ದು ನಮಗೆ ಅನಿಸಿತು ಹಾಗಾಗಿ ಇಲ್ಲಿನ ಪರಿಸ್ಥಿತಿಯನ್ನು ಬದಲಿಸಬೇಕೆ೦ದು ನಾವು ಟೀಚರೊ೦ದಿಗೆ ಸುಮಾರು ಸಲ ಮಾತನಾಡಿದೆವು, ಆದರೇನು ಅ೦ಗನವಾಡಿ ಸುಧಾರಣೆ ಆಗಲಿಲ್ಲ. ಟೀಚರು ತನ್ನ ಸಮಸ್ಯೆಯನ್ನೆ ಹೇಳುತ್ತಿದ್ದರೆ ವಿನಃ ಆ ಸ್ಲ೦ನಲ್ಲಿ ಮಕ್ಕಳು ಸೌಲಭ್ಯಗಳಿ೦ದ ಎಷ್ಟು ವ೦ಚಿತರಾಗುತ್ತಿದ್ದರೆ೦ದು ಕಿ೦ಚತು ಭಾವಿಸಿಲ್ಲ. ನಾವು ಅವರ ಸಮಸ್ಯೆಯನ್ನು ಸಹ ಅರ್ಥಮಾಡಿಕೊ೦ಡೆವು, ಆದ್ರೆ ಅವರು ಒಬ್ಬ೦ಟ್ಟಿಗರು ಮತ್ತು ವಿಧವೆ ಎನ್ನುವುದು ಬಿಟ್ಟರೆ ಬೇರೆ ಸಮಸ್ಯೆಗಳೇನು ಇರಲ್ಲಿಲ್ಲ. ಯಾವಾಗ ಅವರೊ೦ದಿಗಿನ ಮಾತು ಪ್ರಯೋಜನವಾಗಲ್ಲಿಲ್ಲ ಅವರ ಅಧಿಕಾರಿಗಳಿಗೆ ೨-೩ ಸಲ ಬರವಣಿಗೆಯ ಮುಲಕ ವಿಷಯ ಮುಟ್ಟಿಸಿದೆವು.ಅವರು ಸಹ ಯಾವುದೇ ಕ್ರಮ ತೆಗೆದುಕೊ೦ಡಿಲ್ಲ. ನ೦ತರ ಸಮುದಾಯದವರೊ೦ದಿಗೆ ಮಾತನಾಡಿದೆವು. ಸಮುದಾಯದವರೊ೦ದಿಗೆ ಮಾತನಾಡುವಾಗ ಮತ್ತೊ೦ದು ಹೊಸ ವಿಷಯ ಬೆಳಕಿಗೆ ಬ೦ತು, ಒಟ್ಟು ೪೦ ಹೆಣ್ಣು ಮಕ್ಕಳನ್ನು ಭಾಗ್ಯಲಕ್ಷ್ಮಿ ಸೌಲಭ್ಯದಿ೦ದ ವ೦ಚಿತರಾಗುವ೦ತೆ ಮಾಡಿದರು  ಈ ಭಾಗ್ಯಲಕ್ಷ್ಮಿ…. ಟೀಚರು. ಇದರ ಬಗ್ಗೆ ನಮ್ಮಲೇ ಚರ್ಚೆಗಳಾಯಿತು ಮತ್ತೊ೦ದು ಸಲ ಅ೦ಗನವಾಡಿ ಟೀಚರ ಹತ್ತಿರ ಮಾತನಾಡುವುದೆ೦ದು ನಿರ್ಧರಿಸಿ ಅವರಿಗೆ ಮತ್ತೊ೦ದು ಅವಕಾಶ ಕೊಟ್ಟೆವು. ಅವರು ಸುಧಾರಿಸುವ೦ತೆ ಕಾಣಲ್ಲಿಲ್ಲ ನಮಗೆ ಅದೆ ಸಮಯದಲ್ಲಿ ಅದೃಷ್ಟವಶಾತ ಹೊಸ ಶಿಶು ಯೋಜನ ಅಧಿಕಾರಿ ಬ೦ದಿದ್ದು ಅವರು ನಮ್ಮೊಬ್ಬ ಸಹೊದ್ಯೋಗಿಯ ಸ್ನೇಹಿತರಾಗಿದ್ದು ಒ೦ದು ರೀತಿಯಲ್ಲಿ ಸಮುದಯಕ್ಕೆ ಅನುಕೂಲವಾಯಿತು. ನಾವು ದಾಖಲಾತಿಯೊ೦ದಿಗೆ ಅವರನ್ನು ಭೇಟಿಯಾದೆವು, ಪರಿಸ್ಥಿತಿಯನ್ನು ಅವರೆ ಬ೦ದು ನೋಡಿ ನ೦ತರ ಕ್ರಮ ತೆಗದುಕ್ಕೊಳ್ಳಬೇಕೆ೦ದು ಅವರಿಗೆ ಹೇಳಿದೆವು.

ಹೇಳಿದ೦ತೆ ಅವರು ಅ೦ಗನವಾಡಿಗೆ ೧೦ ಗ೦ಟೆಗೆ ಬ೦ದರು. ಅವರಿಗೆ ಅ೦ಗನವಾಡಿಯು ಯಾವ ಸ್ಥಿತಿಯಲ್ಲಿದೆ ಎ೦ದು ತಿಳಿಯಿತು, ನ೦ತರ ಮಹಿಳೆಯರೊ೦ದಿಗೆ ಗ್ರೇಸ್ ಕೇ೦ದ್ರದಲ್ಲಿ ಸಭೆ ನಡೆಸಿದರು, ಸಮುದಾಯದೊ೦ದಿಗೆ ಮಾತನಾಡಿದರಿ೦ದ ಅ೦ಗನವಾಡಿ ಟೀಚರಿ೦ದ ಎನೆಲ್ಲಾ ಸಮಸ್ಯೆಗಳಾಗುತ್ತಿದೆ ಎ೦ಬುದು ಅವರಿಗೆ ತಿಳಿಯಿತು. ಎ೦ದಿನ೦ತೆ ಆ ದಿನವು ಟೀಚರ್ ೧೧ ಗ೦ಟೆಗೆ ನೇರವಾಗಿ ಸಭೆ ನಡೆಯುತ್ತಿದ್ದ ಗ್ರೇಸ್ ಕೇ೦ದ್ರಕ್ಕೆ ಬ೦ದರು. ಲೇಟಾಗಿ ಬ೦ದದ್ದಕ್ಕೆ ಅವರ ಅಧಿಕಾರಿ ಕಾರಣ ಕೇಳಿದರು ತಕ್ಷಣ ಉತ್ತರ ನೀಡದೆ ಸ್ವಲ್ಪ ಸಮಯದ ನ೦ತರ ತನಗೆ ಆರಾಮ ಇರಲ್ಲಿಲ್ಲ ಎ೦ದು ಹೇಳಿದರು (ಹುರುಳಿಲ್ಲದ ಉತ್ತರ). ಟೀಚರನ್ನು ನೋಡುತ್ತಿದ್ದಾಗೆ ಸಮುದಾಯದವರು ರೇಗಾಡಲು ಶುರು ಮಾಡಿದರು- “ಇಷ್ಟು ವರುಷಗಳಿ೦ದ ಅ೦ಗನವಾಡಿ ನಡೆಸುತ್ತಿದ್ದೀಯ ಯಾವುದಾದರು ಒ೦ದು ಮಗುವಿಗೆ ನಿನ್ನಿ೦ದ ಅನುಕೂಲವಾಗಿದೆ ಎ೦ದು ಹೇಳು ನೋಡೋಣ”? ಇದಕ್ಕೆ ಅವರ ಹತ್ತಿರ ಉತ್ತರವಿರಲಿಲ್ಲ. ಸುಮಾರು ಸಮಯ ಚರ್ಚೆಗಳಾಯಿತು, ಅ೦ಗನವಾಡಿ ಟೀಚರ್ ತಮ್ಮ ನಡವಳಿಕೆಯನ್ನು ಸಮರ್ಥಿಸಿಕ್ಕೊಳ್ಳಲು  ಸಮುದಾಯವರ ಮೇಲೆ ಗೂಬೆ ಕೂರಿಸುತ್ತಿದ್ದರು, ಆ ಸ್ಲ೦ನ್ ಲೀಡರ್ ಅವರನ್ನು “ನೀವು ಹೊರಗೆ ಹೋಗಿ ಇದು ನಮ್ಮ ಸಮಯ ನಿಮ್ಮ ಸರ್ ಹತ್ತಿರ್ ನಾವು ಮಾತನಾಡುತ್ತೇವೆ ಎ೦ದು ಹೇಳಿದರು”. ಸಮುದಾಯದವರು ಈ ಅ೦ಗನವಾಡಿ ಟೀಚರ ನಮ್ಗೆ ಬೇಡ ದಯವಿಟ್ಟು ಬೇರೆ ಟೀಚರನ್ನು ನಮಗೆ ಕೊಡಿ ಎ೦ದು ಒಮ್ಮಲೆ ಕೇಳಿಕೊ೦ಡರು.ಅದರ೦ತೆ ಆಗಲಿ  ಎ೦ದು ಅಧಿಕಾರಿಗಳು ಒಪ್ಪಿಕೊ೦ಡರು.

ಸಧ್ಯದಲ್ಲಿ ಒ೦ದು ಒಳ್ಳೆಯ ಟೀಚರನ್ನು ಕೊಟ್ಟಿದ್ದಾರೆ, ಆದರೆ ಅವರು ಡೆಪ್ಯುಟೇಷನ್ ಮೇಲೆ ಬ೦ದ್ದಿದ್ದಾರೆ, ಆದಾಗ್ಯು ನಾವು  ಈ ಅ೦ಗನವಾಡಿಗೆ ನಿರ೦ತರವಾದ ಟೀಚರ ಬೇಕೆ೦ದು ಅನುಸರಣೆ ಮಾಡುತ್ತಿದ್ದೇವೆ.ಅದಕ್ಕೆ ಅಧಿಕಾರಿಗಳು ಒಪ್ಪಿ ಮು೦ದಿನ ಅಭ್ಯರ್ಥಿಗಳ ಆಯ್ಕೆಯಲ್ಲಿ ಹೊಸ ಟೀಚರನ್ನು ಕೊಡುವುದಾಗಿ ಭರವಸೆ ನೀಡಿದ್ದಾರೆ.

ಹಿ೦ದಿನ ಟೀಚರ್ ಸ್ವಲ್ಪ ಮಟ್ಟಿಗೆ ತನ್ನ ನಡವಳಿಕೆಯಲ್ಲಿ ಬದಲಾವಣೆ ಮಾಡಿಕೊ೦ಡಿದ್ದರೆ ೪೦ ಹೆಣ್ಣು ಮಕ್ಕಳು ಭಾಗ್ಯಲಕ್ಷ್ಮಿ ಸೌಲಭ್ಯದಿ೦ದ ವ೦ಚಿತರಾಗುತ್ತಿರಲ್ಲಿಲ್ಲ…., ಕೊನೆ ಪಕ್ಷ ಈ ಸ್ಲ೦ನ್ ಮಕ್ಕಳು ಸಾಕ್ಷರರಾಗಿರುತ್ತಿದ್ದರು…. ಸ್ವಸಹಾಯ ಗು೦ಪು ಅಥವ ಸ್ತ್ರೀ ಶಕ್ತಿ ಗು೦ಪುಗಳಿ೦ದ ಹೆಚಿನ ಮಹಿಳೆಯರು ಆರ್ಥಿಕವಾಗಿ ಸಬಲರಾಗಿರುತ್ತಿದ್ದರು…..

-Munegowda C.M, Amrutha and UHP team

Whose life is it anyway ?

11 July began like any other Monday in KG Halli,  meant to be a quick review of the last week and a plan for the one to come, but unfolded otherwise. We were interrupted by a phone call from Bharatmata slum; and another, and a third, until it became clear that we needed to be there soon. The information was that Juliet who had gone underground since her last ANC check-up, had surfaced, and the entire community was on the alert. They had seen our team go to unusual lengths trying to track her, and wanted to help.

 So three bus stops and fifteen minutes later all five of us reached Ms. Pakyamary’s place and I met the young woman for the first time. Of indeterminate age, the right side of  her face twisted and swollen with an infected tooth, she seemed the epitome of  fear and misery. Juliet is well under five feet and looks as though a mild breeze will blow her away. Under the ‘dupatta’, the small swelling of her belly is barely visible, and surrounded by a group of loud and angry women, she was led to the small Jesus and Mary shrine nearby. A feature of this urban area are the small Christian, Hindu and Muslim shrines, where the old and infirm sometimes rest and shelter.

One more day in the field – and a million more questions

The first minutes were volatile, with the voices of many angry women creating a raucous backdrop to a highly charged scene. Ms.Pakyamary herself, a powerful local leader was loud in her accusations, asking why Juliet had “run away” and proved so elusive. She , of the soft voice became totally silent, when faced with all the questions. Finally, everyone departed, the local ladies to their chores, two team members for school permissions and two others for medicines and antibiotics for our patient. Antu and myself stayed on, and we tried to gently question and piece the story of the last two months together. Extracting information from this young woman was a huge challenge. We listened,cajoled,advised, entreated, listened some more…….. in a vain attempt to understand her actions.

It appears that this young lady is truly abandoned, she does not know where her mother is, her brothers are incommunicado (no one would admit to knowing them when enquiries were made in the area) and her equally young husband is addicted to drugs. She said her mother-in law fed her dosas this morning and told her to leave the house ……..

When faced with the question of what to do next, she seemed really clueless, at a term pregnancy with an intra –uterine growth retardation, and severe anemia, strangely uncaring but very fearful of the future. From bursting into tears and begging Antu to stay with her in hospital to stubbornly refusing to go back home, we had glimpses of a young child who has never known security and been driven by fear from one life-event to the next. She has spent much of her young life on the road, I suspect. Finally she agreed to wait there while we bearded the lion in the den…….her mother in law who had already given the team a mouthful.

This stalwart, mother of eleven children ( “I have buried five of them”) also appears of indeterminate age, albeit older than Juliet. Life is clearly an immense struggle, a drunken husband lolls on the bed, crying over the loss of the last child who was stabbed in a brawl two months ago, and her voice rings true as she describes the hard work and hunger that haunt her days as a rag picker. She is a survivor; when she speaks, I can see where the Tamil films get their salt –of-the-earth heroines from. After sometime as she repeats herself and her outrage at Juliet’s behaviour, it turns surreal and I am not sure if this is art imitating life or vice-versa. Here is a woman who has very strong ideas on “mariyadaya” –respect- and the fact that women must do their bit…… “I give her little work” she says, “not like I had to do when I was expecting my first child”……..And her eyes fill with unshed tears “ I lost one daughter, she is like another –see I have saved hundred rupees even hidden from my husband, for her delivery”….. “ But how can she go out and claim I do not care”……The ego is hurt, that despite all she has been maligned.

Finally, after much listening and some persuasion, she agrees to look after Juliet if we talk to her.

And this is where we lost the thread. We descended back to the shrine thinking we had “fixed it”. Juliet started out accepting but once her mother in law entered with the accusations, she turned the offer away. “ I will go to my Anni”……an older brother’s wife who has not featured in the story till now. A figment of her imagination? Is she clutching at straws?

And we are left wondering afresh at our definitions of health –  not merely the absence of illness, but the state of physical, mental and social well being – and their relevance in our daily work. How supremely satisfying it is to say ‘holistic care’ or ‘cradle to grave’ and then be given pause to think just because a young and very lost woman wandered into our life by becoming pregnant.

Tomorrow the team is going back to ask if she would like to deliver in an institution that might extend care in such a case as this. If they find her…………..

-Roopa Devadasan

Why Juliet is reluctant to visit Public Hospital?

Why Juliet is reluctant to visit Public Hospital?



Is Juliet’s fear of going to a health provider justified?

Are health providers sensitive to an unusual patient like Juliet ?

Let us explore the Issues further

Juliet is 13 years old and married to Narayana who is 15 years old. She lives in a congested small house in Bharathmata slum. She was detected as pregnant in the month of January by Dr.Roopa/ Dr.Thriveni . As a follow-up task Anthu and the Community Health Assistants (CHA) have been repeatedly motivating her to undergo antenatal check up (ANC) but she has never yielded to suggestions given by our team. Whenever our team visited the slum they consistently motivated her but unfortunately it was similar to watering a barren land. Somehow she would always escape from our sight. To avoid our suggestions or accompanying her to the hospital there would be an answer that she was not at home, she had gone to her mother’s place etc.

We would discuss her in our review meeting and feel helpless of being unable to motivate her. We were in dilemma whether to give up or pursue her to visit the urban health center. At that point Anthu said –“No I will take her to the hospital”.

Anthu was spurred into action, along with Josephine she took Juliet to the public health maternity home. Taking Juliet to the hospital was not an easy task. Anthu and Josephine reached Bharathmata slum at 9.45 am and waited till 11.30 am to meet Juliet and lure her into accepting to visit the hospital. Even on that day Juliet played the same tricks, unwilling to attend the hospital. After an hour of restless waiting Josephine went to her home to fetch her. She found her at home completely disconcerned about her health and need to go to the hospital. After long hour of convincing, Josephine and Anthu took her to the hospital.

When they arrived at the hospital it was 12.30 pm, past registration time and the hospital staff refused to take her in. After explaining their effort in motivating her to have ANC, the nurse agreed to allow her in. She was taken to the registration counter and later to the nurse for general check-up. Here the nurse collected general information about her family, marriage and occupation of her husband. When the nurse realized Juliet was 14 years old she made fun of her saying “What is your age, do you want a pregnancy at this age?” the rest of the staff started  laughing at this remark. In addition, while gathering this information, the tone of the nurse was authoritative and insulting, this behaviour of all the staff made Juliet feel as though she had done something wrong. When Josephine felt the situation was getting out of hand, she intervened to tell them “Please do not insult and laugh at her, with great difficulty we have brought her for ante natal check up”.

Meanwhile she had completed blood and urine test including BP and weight check-up. All the results showed her to be a high risk patient (wt is 34kg, BP100/60, HB is 8.0gm). Later she was taken to the doctor for further checkup. The young interns visiting the maternity Centre realized this was a risk pregnancy and refused to do further check-up. Juliet waited for the senior doctor, who referred her to Bowring or Ambedkar for further tests like scanning and PPTCT.

Either a teenage pregnancy, or adult pregnancy, the responsibility of the public providers requires sensitive attitude at least towards unusual patient like Juliet. An insulting attitude of the public health staff induces fear among teen agers to get ANC. My perspective is strongly supported by Juliet’s view about the hospital and its staff. She told us that she was scared of going to the hospital since she had heard that they would be rude towards teenage pregnancy.  With this attitude how can one expect the community to have trust in public health providers?

On one hand there is the community with no trust in public health services, and on the other handwe have public health providers  with de-sensitized behaviour towards the community. This is a huge challenging for us.

Not how, but we are constantly exploring the ways and means of building the trust between the community and the public health providers!!!!!!!!!!

Amrutha

Faculty

Institute of Public Health