Thursday, April 19, 2012

HIV: The Care And The Caregiver (3)

If I you are finding these series of posts monotonous, dreary and tedious then I am doing a good job because apart from frightening, that is exactly how it felt then.
 I do not know if that is how it is done in all public hospitals but at the Lagos Island Maternity a doctor had to book you for surgery, on the day his consultant is billed to be in the theatre.That done, I was given a list of things I needed to buy for the operation, and this was everything! From the packs of 'drip' (intravenous drugs) to the anaesthetic, to the syringes and needles, rubber gloves, cotton wool, etc. The pharmacy handed all these to me in a large cardboard box and I felt like I was staring fate in the face. The nurses in the ward also required that I buy a whole carton (consisting of about 12 100ml bottles of bleach) which would be used as antiseptic for cleaning in the theatre.

I never went into surgery and the reason why, and the delivery are documented here.The only thing I can add is that at some point in the labour room, due to my medication history, the medical staff were not quite sure what drugs to put me on but they still gave me some ARVs intravenously, ( I believe it was Nevaripine and AZT but really I cannot remember much that happened inside the labour room apart from the pain and the 'work'.) My baby was also given a single dose of nevaripine at birth and then she continued on Zidovudine for 6 weeks.

I have taken the pains to describe the experience as objectively and as detached as I can be, because I want to impress that, for someone coming from ignorance to this point, it was quite a helpful experience. I will advise any expectant mother diagnosed with HIV to as early as possible register at the LIMH. That said, though, since we are talking healthcare, I would also advise that she register in a private hospital as well, as there are some specific practices that on the short run could prove counter-productive to the good work being done there. If you noticed, I highlighted a few phrases and clauses over these series, those are the things I intend to point out.

Let's begin with proper enlightenment and the attitudes to HIV. Just to set the background, I work in the media; therefore I have seen and heard most -if not all- of the publicity campaigns related to HIV/ AIDS. Why then did that not help to enlighten me? How could I have fallen victim to a greedy doctor? The answer is in the nature of the publicity/ awareness campaigns both to the public and to those in medicare. Hepatitis B, for instance is potentially more deadly than HIV. Gonorrhea is sexually transmitted. And people with hypertension and some forms of diabetes are on drugs for life, like those on ARVs. But you can easily walk into any hospital and be treated for all of these other illnesses without anyone raising an eyebrow..So why is HIV given such a bad name? The answer I have come up with is that pushing out the message that HIV is such a scary, fatal and all-round terrible illness is actually beneficial, economically, to some people. It is this fear and stigmatization that my previous doctor was trading in, believing- and for the most part rightly too- that people who could afford the personal attention would not take the chance and try the public options. But he is not alone. The AVRs he was dispensing, are supposed to be controlled drugs, but he was getting them from a source! He definitely was not buying them from a pharmacist, so it's an issue with many aspects.My take on this requires a whole post so I wont go much further for now.

Another practice I felt quite uncomfortable with in the LIMH, was the tedious registration process. In this situation, I speak both from the perspective of a pregnant woman, and that of a person diagnosed with HIV. If my experiences are anything to go by, quite a few women would come into that hospital as a last resort, having been rejected by family and friends and hospitals after the dreaded diagnosis. How does a bureaucratic registration process help them? And who can they turn to for a blood donation? I even had two people try to give blood for me but they said the first had a low PCV and the other was recovering from an illness or something. So if I did not know that senior executive what would I have done?
The other clog in the wheel during registration was their unwillingness to record me with a maiden name! In this day and age why is it so hard to understand that a woman can have a child without being married? Everywhere it was ' your husband' and so on. Even  when I had given birth, the lady at the office where I got my notification of birth certificate, was insisting on writing my surname as  the same as my daughter's saying she would get into trouble if she didn't! As a  matter of fact she still did and so I tossed the notification aside as the mother, a Mrs Joie ----, does not exist. It was the same thing with the birth certificate. It's just crazy! In a cosmopolitan state like Lagos, where even in government you have single mothers, I do not understand how such backwardness still exists.  I am emphasizing this because these are the sort of things that could send people into the arms of quacks.

It's also quite off-putting that in a hospital that cares solely for pregnant women- women with an uncomfortable and notorious habit of peeing every second- no attempt has been made for proper restroom facilities. LIMH like most public hospitals is filled to overflowing and has a constant flow of human traffic, mostly pregnant women. However, the toilet facilities for out-patients, is appalling, to say the least. The only available toilets are a set of 4 'cubicles' in the inner room of a shop that seemed more like a storage room for crates of coca-cola products, bags of 'pure water' and cases of bottled water, loaves of bread and other knick-knacks. You paid 10 naira and were ushered into the place or asked to wait for the next available 'opening'. Behind the worn-down swivel door, that seperated the shop from the toilets, the floor leading to the cubicles was flooded with water from a perpetually open tap,and was overcrowded with all sorts of pails, jerrycans, cups and every vessel for carrying liquids imaginable.As if that was not enough, depending on the time of the day you came in, you would see all sorts of people, these water hawkers who pushed wheelbarrows of jerrycans in the streets,security guards who probably wanted a bath,  muslims about to perform their ablution, or vistors/helpers to those in the labour ward - rarely ever pregnant women- fetching water or waiting to fetch. Apparently, the place also doubled or tripled as a place for buying water, and they sold to everyone who could come into the gates;  and that would be EVERYONE. You wade through that crowd and into the cubicles, which were also flooded, so bad that their doors, eaten badly by mold, made whoever was inside visible up to mid-calf. The broken down toilets with their open tanks could not be flushed so you were expected to use one of the pails or whatever to flush the toilets. Oh! and beside the toilets was a bathroom, mostly for the same people fetching the water. The funny thing is that the place was not dirty. You could see through the flood, the ground was swept and all that, but that did not make it any less disgusting. Why can toilets not be built for pregnant women that are decent and hygienic?

And now, the piece de resistance. I have deliberately saved this for last. It is one of the downsides of medicare in Nigeria, and I call it the Doctor God Syndrome. I mentioned earlier that my previous doctor was dispensing what he claimed were ARVs to me without telling me what  he was giving me and I didn't ask. It is quite a common practice in Nigeria for the doctors to treat their patients somewhat contemptuously or patronisingly. This manifests in several ways; during consultation the doctor barely has time to listen to you and scribbles away without telling you his observations and/or thoughts, he prescribes drugs and/or therapy but does not bother to explain them or inform you of them and he acts like you are a bother or a nuisance. The reason for this behaviour , in my view, is not far-fetched.
Historically, doctors and those in the medical profession have always been revered in Nigeria: doctors, more. Nigerians, especially those born in the 60s downwards, are like Jews. For them there are 'noble' professions; Medicine, Law, Engineering. So the doctor is the closest to God and a symbol of life by their standards. I am not exaggerating here, in those days it was a pride and a huge sense of accomplishment for a parent to have a medical doctor as a child. This reverence, gradually became the norm.( Just last week, when I went to the hospital for my malaria, I had to severely scold the doctor I met. It's actually my daughter's hospital but for non-gynaecological issues I go there. The doctor was neither courteous nor warm, and this would be the third time I am noticing this. When I told him my complaints, and he wrote his faint mumble 'query malaria' was the only sign that he knew I was still in the room. He wrote some tests down that he wanted me to do, I was about to ask him about it, when he raised his voice and told me to go to the lab before the person in charge went off. Hmmm. Let's just say I told him where to get off and advised him on a change of career. And I did not say this with love.)
 Another reason, is the high level of  illiteracy in the country. An uneducated person does not, cannot, ask questions, because he/she will not even understand the answers and only wants to get better. Public hospitals are full of such patients, and so the doctors tend to just treat them like statistics rather than people. This was why my LIMH doctor took a liking to me because I was not the regular patient he was used to. I remember one day, in the consulting room he shared with some other resident, the marked difference between how he treated me, and how the other (lady) doctor treated her patient. She was all frowns, had no greeting for her patient, just told her to lie down. And when she(the patient) dropped her bag on a chair so she could do that, rudely told her to pick it up. When the lady lay down, the resident shouted 'lie down properly', whatever that meant. At the end of the day, all she did was measure her fundal height and ask if her drugs were finished. To say I was disgusted would be putting it mildly.
A third reason, which is all my own theory, is that because of the nature of their jobs, doctors have to learn to become detached from their patients. Maybe in doing so, they inadvertently develop a thick skin. Nigeria is not an easy place to be a caregiver, and Lagos, more especially. The doctors are dealing with the same economic issues as the patients, and they still have to be nice to the scores and scores of people they see everyday. But that's just an excuse.

The ramifications of this sort of behaviour from doctors and medical staff are obvious and far-reaching. What if I was a wealthy illiterate with enough money to get a Caesarean done? I would probably have ended my life and that of the child in the first hospital ! Not to mention how drastically wrong my treatment for HIV would have gone. And then the invisible consultants who never see their patients. Is that wise? I remember a lady who had a ruptured uterus in the same labour room as I was, at the same time. I heard they were prepping her for surgery by about 7pm. It was then about 2 or 3pm, and the lady was groaning in pain. I also recall another act of impatience a doctor exhibited with me. Apparently, I had suffered a tear in labour so I needed to be stitched. I was given general anesthesia prior to this because my placenta could not be expelled and it had to be manually evacuated.I therefore woke up to the pain of someone stitching my vagina! In my drugged state i was wincing and jerking and this nitwit actually slapped me hard, twice on my legs saying he had other patients to deal with and my reactions were slowing him down.
I have heard that one of the reasons there are centers and clinics dedicated to the treatment and prevention of HIV is to be able to keep track of the statistics; those who have the illness, those who are being treated, those who have died,etc.However, the way people are treated in these centres and clinics as illustrated above, can go a long way to providing the right or wrong information/ data . This was one of the reasons I decided to look further for my treatment needs. Apart from the fact that I also noticed that after the birth of the baby, the hospital really were not equipped to handle anything more.

Next Stop,  Lagos University Teaching Hosital (LUTH)






7 comments:

  1. i'm glad you're writing all these stories down...they are simultaneously fascinating, depressing, disgusting--the part about the toilets, i mean--heartbreaking, and riveting.
    i'm amazed you are in one piece after all this...and with a healthy child, too. it's a testament to your persistence and grace that you emerged and are willing to share your tale. the system is broken but you didn't let it break you. sorry if this is corny. i am a little bit weepy after reading your post.

    ReplyDelete
    Replies
    1. I couldn't read the part about the toilet. It was too much. I'm amazed and not in a good way.

      Delete
  2. Aww, Asha, you don't sound corny at all. It was all of those things you mentioned and more. And this is even a system that is trying to do things right! But I take no praise for the way things turned out. It's definitely God's work. That I know for sure. I'm happy you see the need for me to write them as well.

    ReplyDelete
  3. OMG! WOW! WOW! Only i can say is thank God i am not going to med school in Nigeria. In my school, they DRILL into your head the importance of treating your patients well, listening and generally having good bed side manners and more than anything professionalism. I cannot even begin to imagine these doctors having this kind of attitude here, they will end up with no patients to treat or worse still fired.

    Now i believe what my friend was saying that a Nigerian doctor, here in America slapped a non-compliant patient. My first words were "does he think he's in Nigeria". It all makes sense now. He probably went to school and practiced in Nigeria before coming here. What a mess.

    I can't even begin to imagine. I'm so sorry you had to go through all of this. It's crazy. I should look into doing an away rotation in Nigeria. Maybe i will stop being so shocked at certain things.

    You mentioned something that caught my attention because it is the subject of my project proposal, why with all the awareness do people not practice what they know. Also, the fact that you said the awareness campaign in Nigeria is based on fear and stigmatization was mentioned in that book i told you about "The Secret". Things need to change. It's kind of depressing. Everything is.

    ReplyDelete
  4. hey MS,

    In fairness to them, doctors here, are nowhere as well-paid as your American colleagues. (If what I read about American doctors is anything to go by.)And they have to deal with lack of infrastructure, equipment and facilities as well. Not to mention that they are overworked. So these are the sort of issues you are likely to see on the medical perspective.
    Yes, the sensitization campaigns around HIV need to change. I read yesterday that the governor of Lagos state, along with Kenneth Kaunda of Zambia and several other prominent personalities were going on a 10-mile walk for HIV/ AIDS awareness. The advert also mentioned that Kenneth Kaunda lost his son to the disease. While they made use of the 'fear' tactic, I still think they are taking a step in the right direction as someone popular is identifying with this disease, in his own way. But Lagos state, though,is exceptional. They are doing a laudable job in medicare for people with HIV. You'll understand why I say so in my next post.

    ReplyDelete
    Replies
    1. To be honest, i don't know the struggles doctors in Nigeria face but i still think it's inexcusable for a doctor to hit a patient because she's in pain and he has other patients to get to. Yes, Dr. in America do get paid well. I do have a good number of Doctor friends in Nigeria, this is something i will be discussing with them.

      Great campaign effort. I think rather than fear they should focus on education. People still have a lot of misconceptions about the disease even here in America. When i worked in a psych hospital before med school, a 20yr who just found out he was positive tried to kill himself and was brought him. We got talking later and he told me he got it from his boyfriend. I asked him if he knew the boyfriend was positive and he said yes. So why didn't he use protection? They had been dating for over a year so he thot he wouldn't get it anymore. I was shocked. He is one of the main reasons why i got so interested in HIV awareness and prevention.

      Delete
  5. Oh, for sure there was no excuse for that doctor. He's just lucky my delirium and bewilderment got the better of me.
    Crazy story about the guy though. But young people tend to think they are invincible.

    ReplyDelete