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Showing posts with label confidentiality. Show all posts
Showing posts with label confidentiality. Show all posts

Thursday, 23 September 2010

So much for not wanting people to know…

When we first wanted to meet up with Roslan some time in July, he didn’t want us to visit him at home. It was so difficult to get him to even answer our calls or text messages, what more to allow us to visit him at home. He didn’t want our visit to cause curiosity amongst his neighbors, he said. He didn’t want them to find out that he had HIV, although we assured him we wouldn’t be mentioning anything about HIV.

We respected his wishes and arranged to meet outside, so we could arrange for financial help, particularly for his children’s schooling needs.

Since he didn’t bring along the supporting documents, we gave him the list of documents we needed and told him to bring along the photocopies of the documents on the last Tuesday of the month, when we were scheduled to go for our clinic duty in Taiping Hospital.

But on the last Tuesday of July when we planned to start our clinic duty in Taiping, the clinic was cancelled as the doctor had to go for a meeting elsewhere.

By mid-August, when a few of us arranged to visit another family in a nearby town, initially we wanted to meet up with Roslan again, to get the documents. But he never answered our calls, and neither did he reply our text messages. So we gave up since we were not supposed to visit him at home anyway.

But a few days later, a male colleague of mine who had been liaising with Roslan before this, received a text message from an unknown number. It was Roslan’s wife, saying that Roslan had died earlier in the month. My colleague then called to find out more, but the lady sounded quite distraught and didn’t really want to talk.

Sensing that she may not feel comfortable talking to a man, I took over the case. I started off by sending a text message saying who I was, then I called. Roslan’s wife, Maya, did sound like she was on the verge of crying, but she was willing to talk. Initially, when I asked if I could visit at home, she was quite reluctant. But when I asked if we could arrange to meet outside, she said she didn’t have any transport. Well yes, she has her late husband’s motorcycle, but she doesn’t have a license. The furthest she dared go on the motorcycle was to her children’s school nearby.

Maya was actually reluctant to allow me to visit her at home for the same reason her late husband refused to allow us earlier on. When I told her that I’d be going “biasa-biasa aje, naik kereta sendiri”, she finally agreed to let me visit.

I know in this case, I’d need to convince her that the visit would be discreet, so I decided to go alone. Besides, for first visits I prefer to go alone as usually I’d be able to get more info that way. When I bring another volunteer along, the new clients, especially the ladies, don’t seem to talk much.

But Maya stays in an unfamiliar territory to me, and since I couldn’t bring a friend along, I had to depend on Mrs G…

gps

Well no, Maya’s kampong is not listed in my GPS. So what I’d usually do is I’d ask for the nearest landmark, possibly a school. In Maya’s case, since she said the furthest she dared ride her motorbike was to her children’s school, then the school shouldn’t be too far away. And yes, the school is listed in my GPS, so all I had to do was set the school as my destination.

I managed to get to the school without a hitch. Then I called Maya to get further directions. Apparently, the junction I had to take was the junction right after the school, just follow that road and find her house number. Sounds easy? Well yes, quite easy… but as I was driving into the kampong, I was praying hard that there wouldn’t be any cars heading out the opposite direction! You see, it was just a small kampong road with paddy fields on my right and a big drain on my left!

I finally found a mailbox with her house number, and her house was across the big drain. Maya was already waiting in front of her house. The titi (small bridge) in front of her house was not accessible by car. Maya then showed me a bridge that was accessible by car (the width ngam-ngam just nice for the car). Reversing all the way back wasn’t easy especially on such a small road. I then saw a small piece of land a bit further up where I could make a turn, so I took a turn there, only to find out that the ground was wet and soft… and when I wanted to reverse out, only the wheels turned, but the car didn’t move! Alamak! Would I have to make a scene and get the kampong folks to help me out? Keeping my cool, I maneuvered the car by taking a different angle, and this time I managed to get the car out (phew!), drove back to the titi and then on to Maya’s house.

Then only Maya told me, “Tanah tu dulu sawah kak. Sekarang depa nak buat surau… baru semalam tambak.” Adoi! No wonder la my car almost got stuck!

Anyway, Maya, a mother of 4 girls, age ranging from 7 to 13, told me of how she and her late husband had kept their HIV status only to themselves and their close family members. When Roslan died at home almost 2 months ago, initially, the kampong folks didn’t know anything about his HIV. Roslan looked normal, no skin disease or the likes for people to suspect anything. But then came the people from the health department, in their uniforms and in the Jabatan Kesihatan van, and making their presence felt by all and sundry. They even told the family members to go out to buy clorox, for those who were bathing the body to wear apron, boots etc. And all these they did in the open. No discretion at all.

In the end, all the kampong folks found out Roslan had AIDS. And Maya had to deal with questions like “Laki engkau dulu ada main perempuan ke?” and the likes.

No wonder Maya was reluctant to let me visit earlier. She probably thought I’d appear in a similar manner. But when I appeared today, alone, and in my own private car, Maya seemed comfortable with my presence, and was even willing to talk about everything, from day one when she was first diagnosed.

Right now Maya survives on her late husband’s savings. When her husband was still alive, she had totally depended on him to pay for the family’s needs. Now that she has to handle the money herself, she’s worried how long the savings will last. I asked about their main source of income.

Kerjakan bendanglah kak. Hasil dapat 2 kali setahun. Kena bayar sewa lagi sebab bendang tu sewa kat orang. Harapkan duit jual padi sajalah. Ikan, sayur saya tak risau sangat. Sayur boleh tanam kat belakang rumah. Ikan boleh cari dalam parit depan tu. Adalah ikan sepat, ikan puyu, ikan haruan pun boleh dapat. Tapi beras kena belilah.”

Beras kena beli?” I asked.

Ye lah, padi kami jual kat taukeh tu, senang sebab benih padi selalu kami beli dari dia, hutang. Bila jual padi kat dia, dia tolaklah hutang tu.”

Dia jual beras tak bagi harga murah sikit ke?”

Harga macam jual kat orang lain jugaklah kak.”

Sigh… I guess it will be difficult for her life to improve if her family continues that way. The only thing to ensure a better future for her children will be proper, undisrupted education.

And so, that’s what I will concentrate on – to help her children with their educational needs. The family obviously qualifies for our Children Education Fund. But if possible I want to arrange for sponsorship for the girls.

Whatever it is, I’ve already broken the ice with Maya. Except for the distance, there shouldn’t be any problem visiting or communicating with Maya after this. She seemed receptive enough, although I haven’t asked her yet if she’d mind me bringing along another volunteer during my next visit.

After getting all the necessary supporting documents from Maya (to help her apply for financial aid), and after finishing a plate of mee goreng and a cup of tea Maya served for me, off I headed home. This time, there was no longer a need for the GPS. It wasn’t hard to find the expressway…

highway

Thursday, 30 April 2009

Confidentiality assured? Really?

Murni called me up this morning. I told her to call me whenever she’s in Ipoh for her hospital appointments or to get her medication. Since she stays out of Ipoh, I’d usually take the opportunity to meet up with her whenever she’s in Ipoh. This time I made sure I told her to wait for me at the waiting area in front of the Klinik Pakar. I didn’t want to go round the hospital looking for parking. That would take 15 minutes at the very least.

Today Murni came to Ipoh alone. Her husband wasn’t working today and so there was someone at home to look after her 1 year old baby. I asked if she wanted some milk powder for the little girl. We had a big box of milk powder at our center and if she didn’t mind carrying the box with her on the bus, she could take the whole box. Murni was glad to accept the offer. To her carrying bulky things in a bus is a normal thing.

While at the center, Murni also gave me the photocopies of her children’s birth certs and whatever other supporting documents to enable me to help her apply for whatever available financial assistance. I also took down details of her schooling children’s list of fees and payments that needed to be paid to the respective schools. Murni has yet to pay a single sen.

All those shouldn’t be much of a problem. What really bothered me was what happened at Murni’s house recently.

2 officers from the Pejabat Kesihatan Daerah where she stays went to visit her at home. No prior calls, no warnings whatsoever, they just went to visit her to find out how she’s doing and to ask her lots of questions. They didn’t even bother to find out if there was anybody else at home who may not know about Murni’s HIV status. None of Murni’s children know that their mother is HIV positive. Worse, when the officers went to visit, Murni’s sister-in-law was there and the officers simply asked Murni questions about her HIV without taking privacy and confidentiality into consideration. What on earth were they trying to do? It’s not like Murni has been missing any of her hospital appointments anyway! And Murni’s appointments are in Ipoh GH, not at the district hospital.

Murni got annoyed. She asked them why they were asking so many questions. It’s not like she’s a prostitute or a drug user anyway. She got the virus from her late husband! The officers said they were just doing their duty… but still, couldn’t they have practiced some discretion as to how to go about? And doesn’t their duty also include the responsibility to keep the matter private and confidential? Why did they simply terjah the patient’s home without warning and started asking her questions relating to her illness? I don't see the need!

So today at the hospital, Murni went to meet SN at the HIV clinic and told her what happened at her home. SN immediately called the Pejabat Kesihatan Daerah to ask them why they had no sensitivity at all. Sigh!

Murni also told me about her friend from her old kampong who’s also HIV+. You see, Murni actually hails from a state up north. Like Murni, her friend, N too found out about her HIV status during pregnancy. They both got the virus from their husbands.

N’s husband died when she was at the early stage of her last pregnancy. When N’s blood test results came out, somehow words spread around town that N was HIV +ve. Guess where the news came from? Yep, the staff at the district hospital where N went to get her blood test done. It’s in a small town where almost everybody seems to know each other.

To support her children after her husband’s death, N opened up a food stall. But because her town folks knew she has HIV, they refused to eat at her stall.

Murni herself found out about N not from N herself. Murni went back to her kampong to visit her married daughter, took a taxi from the bus station to her daughter’s house, and it was the taxi driver who was bad-mouthing N. The guy told Murni about N’s HIV status, and that he wouldn’t want to eat at N’s food stall as N’s saliva may tempias into the food while she cooks and whoever ate the food may get infected as well. In the first place, HIV doesn’t spread through saliva. And secondly, that taxi driver doesn’t mind eating food containing the saliva of the chef as long as the chef is not HIV positive???!! YUKKS!! Now I’m having second thoughts about eating out. Not because I’m afraid I may get infected with HIV, but because I’d start imagining the existence of other people’s saliva in the food I order. YUKKSS!! (Thanks a lot Mr Taxi Driver!!)

Anyway, listening to the taxi driver talking about an HIV+ve friend made Murni feel uneasy. Being +ve herself, Murni didn’t want to argue with the guy, for fear that he may suspect she was +ve too. So she just kept quiet and listened, reluctantly.

And oh, I didn’t finish my story about N, did I? Well, N had to close down her food stall, sold off her house and moved to another town to start afresh.

Looks like the stigma and discrimination is still very strong in this case. But my main concern is; why can’t the health personnel be more professional? Here we are, trying to convince people to go get tested, and to go for proper check-ups at the hospitals if they’re infected, promising them confidentiality, yet the health authorities themselves (like the ones who went to visit Murni at home) can’t keep things private and confidential! (Not all laa… usually those yang kepoh ni are the ones who are not directly involved with HIV cases. So bila dapat tau one HIV case, depa pulak yang kepoh lebih. Those who directly handle HIV cases are usually more trustworthy in this aspect.)

Confidentiality assured? Yeah, right! The authorities better do something about this. Don’t only train those who are directly involved in HIV cases, those in other departments too will need to keep matters like this P&C.