HIV care is complicated. You need comprehensive guidelines which cover most situations regarding the management of HIV. These are usually written by WHO experts with input from local specialists and the Ministry of Health. Obviously developing countries aspire to provide as good a service as they can afford. The temptation is to design the guidelines optimistically, assuming that in the ideal world, there will be more resources for health, more staff, more laboratory tests, more drugs, more psychosocial support. The buzzword is “aspirational”. This can make the guidelines unrealistic, which is disheartening for the front-line health workers who are trying to put the guidance into practice.
Monitoring and evaluation of the care provided is essential. When the patient first tests positive, we need to collect baseline data, such as past medical, sexual and social history, recording whether partners and children have been tested, the results of blood tests, etc. When the patient meets the criteria for starting anti-retroviral treatment (ART), we repeat the process. But here in Zambia, we repeat the process again every time a patient returns for review or to refill their medication, recording the information on two sides of closely printed A4. This is extremely tedious. In Swaziland, for example, the review/refill process is much less complicated, recording just the basics: weight, CD4 count if done, contraception, TB treatment if any, medication and next review date. However, there is another more complicated form to use should the patient be unwell.
The guidelines dictate the schedule of investigations. Some of the tests can be done in our clinic, others need to be done at Kamoto Hospital, or even the regional centre at Chipata. We know what tests we can do at the clinic, but we are never sure if reagents are out of stock or if analysers have broken down at Kamoto. There are special tests – CD4 count, measuring the level of immunity, and viral load, measuring the amount of virus in the blood. The CD4 count is used to decide when to start treatment – currently, patients below 500 will be offered ART. After treatment has been started, we need to know if the virus has been suppressed, so we should determine the viral load. At Kakumbi we have never managed to get a viral load result from the regional centre over the past six months.
There are multiple prompts to consider tuberculosis, which has been relatively neglected at Kakumbi recently. It is important to keep this in mind, as TB is the biggest killer of patients with HIV. (In Swaziland, TB screening is the first thing to be done when the patient comes to the clinic.)
The HIV patient records contain a section on medication – what drugs, how many to be issued, when the patient should return and whether there are “left over” tablets, suggesting the patient has not been 100% compliant. I have yet to meet a patient here who has told me that they forgot to take a tablet!
Initially, vertical programmes – where specialised health workers just dealt with one condition, such as TB or HIV – will produce the best results. But there comes a time in the HIV epidemic that the management becomes well established and almost “routine”. The patients are relatively stable and they want to have their other health problems sorted out at the same clinic visit. The comprehensive care clinic run by Medecins Sans Frontieres at Matsapha in Swaziland shows how HIV and TB care can be integrated into standard health centre services. This process is starting in Zambia.
Two years ago, on every alternate Thursday, about 200 HIV positive people would queue up outside a building on the periphery of the health centre compound, where they would be processed by a visiting specialist team from Kamoto district hospital. The team would bring with them all the medical records, paperwork and drugs in two vehicles. Last month, this all changed. Kakumbi Rural Health Centre started providing integrated care for more than a thousand people taking ART. Planning this must have been a nightmare. Where do we store the records? How do we keep a degree of confidentiality (many patients fear being stigmatised for their status) in the waiting area, when “ordinary” patients have their records in a school exercise book, and “special” patients have large files? Will we be issued enough medication to dispense three months amounts? How will we cope without additional staff?
Today was the my first day operating the new system. Of course it happened on a Monday, the busiest day of the week. The senior nurse/midwife was fully occupied with a huge family planning clinic. A fourth year medical student was attending to the out patients. I saw the patients he couldn’t deal with and started seeing the HIV positive patients. The nurse who has been trained in HIV care was not scheduled to work today, but he was public minded enough to come over and help out. Thankfully there were also a handful of volunteers who knew how the system ought to function.
We must have seen about fifty HIV patients, working through the lunch break until 2pm. They had to wait longer to be seen, but they really appreciated being asked about any other health problems they might have had. Virtually every patient I saw thanked me, even though I couldn’t solve all of their problems. For the first half a dozen patients I saw, I followed the guidelines. Asking dozens of questions about their health, using an interpreter, was dreary. In my experience, most Zambians are not hypochondriacs, but when you ask so many different questions about their symptoms, it was inevitable that people would confirm that, yes, come to think of it, they did have headaches or dizzy spells, nausea or abdominal pain. While these symptoms were not usually serious, they still needed to be evaluated and assessed.
It was taking me twenty minutes to see each patient, so the pressure was on to speed up the process without missing important details. The temptation was to ask a leading question, “You don’t have any problems, do you?” so I could rush through the consultation. But double negatives are very confusing for Zambians. They answer questions literally. For example, if I ask a healthy English patient, “You don’t have chest pain, do you?” they will reply no – meaning, no I don’t have chest pain. Healthy Zambians would answer yes to the same question – meaning, yes I don’t have chest pain.
There were some administrative glitches, too. Occasionally, the patient files were missing a continuation sheet, or the drug register was full so we needed a new drug sheet. The sheets didn’t have ready punched holes, and there was no hole punch. One of the voluntary workers had trouble working out the patient’s Body Mass Index, so I needed to use a calculator to get the figure (this is important as the Ministry of Health monitoring and evaluation team will be auditing us on BMI recording). We were running out of drugs, so instead of issuing three months’ supply, we reduced this to two months. This means we will have to see patients six times a year instead of four times, more work for us, less convenient for the patients.
Sadly, the most important information for me (patient’s weight over the past few visits, their CD4 count, any abnormal liver or renal function tests, for example) was hidden away in a mass of less useful information. There was no summary sheet where you could gather the basic data at a glance. I couldn’t see the wood for the trees.
We should have been checking the haemoglobin of new patients, but our haematocrit machine was not functioning (“It is buggered,” said Trognes, the lab tech, totally unaware of the true meaning of the word). No one knew whether the machine at Kamoto was working, but we can’t get the samples there quickly to be analysed promptly. We had no reagents to check hepatitis B status. The system for ordering TB tests on sputum was byzantine in its warped complexity. Last week we didn’t have the right blood collection tubes for some tests.
Perhaps the resources saved in delegating this work to rural health centres will be used to provide better care to patients who are severely unwell. I can see I am going to have a busy time over the next three months just trying to provide HIV care under these trying circumstances. The medical student will leave us next week. The specialist HIV nurse has to go to Lusaka to sit examinations. The nurse in charge of the clinic is still on vacation. That leaves just a nurse midwife, a health inspector, a lab technician, a pharmacy assistant, a health care assistant and me to run the clinic during the day.