*Pam Dlamini is HIV positive
A snapshot of the state of health in Gert Sibande district in Mpumalanga is not a pretty picture. The Treatment Action Campaign (TAC) has homed in on Gert Sibande as a healthcare hot spot in need of immediate intervention and support, not only because it is one of the 11 pilot sites for the government’s National Health Insurance scheme, but also because health indicators show there are serious problems there.
According to health department statistics, Mpumalanga is the province with the second-highest HIV infection rate in the country, after KwaZulu-Natal. Gert Sibande, which is home to just over a million people, was last year named by health minister Aaron Motsoaledi as the district with the highest prevalence of HIV among pregnant women in the country: 46% of pregnant women are infected with the virus.
Medical waste stands uncollected in one of the three rooms that serve as a clinic in Embalenhe, outside Secunda.
The National Strategic Plan review report reveals clear administrative failures throughout the province. They begin with facilities that stand as white elephants, with equipment and consulting rooms that are hardly ever touched, or clinics built but never used.
Where healthcare premises are in use, they have inadequate facilities, and are in some cases unhygienic, undignified and unsafe. At these facilities patients are forced to wait outdoors for basic healthcare services, where they seldom get to see a doctor. They’re exposed to the elements for long hours every time they have an appointment and have little confidentiality or access to the care they need.
Medical staff throughout the province are hamstrung by their circumstances, or are unmotivated about their jobs and simply go through the motions instead of offering actual, effective healthcare.
Statistics aside, the real issues of health are found in the words and the stories of the people on the ground. These are stories that show just how complex the issue of health is in the province, and just how few opportunities there are for disempowered people to change their circumstances, and how authorities are letting disadvantaged communities down.
All is not well at Piet Retief
At first glance, the new hospital looks like a facility that stands proud. It’s clean, modern and operational. And strangely quiet: it’s the silence that reveals the problem.
The hospital sees about 25 to 30 patients a day. But just a few hundred metres away, where the old Piet Retief Hospital barely stands, as many as 400 patients a day queue for up to six hours to be seen by a doctor at the crumbling institution.
Patients brave rain or shine in a makeshift waiting room outside the clinic in Embalenhe.
Some arrive even earlier to try to be at the front of the queue before the doors open at 7.30am. Here the ceilings have weeping stains from leaking roofs, smashed windows stay in disrepair, linoleum in wards peels off the floors, doors lie where they came off their hinges, stacked gurneys pile up on a patch of overgrown grass and leaking pipes create permanent swamps.
Patients stand in queues; there are not enough benches or chairs for more than about the first dozen people in the queue. About 9 000 people are enrolled for antiretroviral (ARV) treatment here, at the wellness clinic.
It’s also where the national priority programmes dealing with tuberculosis (TB), sexually transmitted infections, male medical circumcision and cervical cancer screening are dealt with. Patients with multidrug-resistant TB, which is resistant to at least two TB drugs, and those sick from defaulting on their ARV treatment are hospitalised here.
Something went wrong with the statistics and the planning nine years ago when the new hospital was being built – that disconnect was between the public works department and the department of health.
The number of beds was downgraded from 240 to 179, and in reality only about 145 beds are currently usable, according to the hospital’s chief executive, Deon Swigelaar. The mess-up in the numbers means the wellness clinic could not be absorbed into the new hospital. Using the old hospital as a wellness clinic was meant to be a temporary measure, but it hasn’t turned out that way.
“We have a ticking time bomb on our hands,” says Swigelaar of the old hospital that is still running as the heart of the hospital’s services, whereas the new hospital is underutilised.
He acknowledges that the biggest failing in his five-year tenure as chief executive has been the lack of real communication between people’s needs and what is delivered to them. “The problem is that we are not asking people what they need, we are just assuming that we’re doing the right thing from head office or from sitting in our boardrooms.”
It also comes down to what Swigelaar calls a lack of administrative will, a lack of commitment to the job, bureaucracy, limited powers for administrators at a district and provincial level, a “silo” mentality within departments, and a lack of continuity in leadership.
Although many health facilities in Gert Sibande district experience a lack of essential drugs, patients discard their medication in bins at Piet Retief Hospital in Mpumalanga.
It translates into the hospital not being able to directly employ staff above a certain pay level, unfilled vacancies or people expected to assume acting capacities, and a lack of buy-in from staff to alter their work hours to accommodate things such as voluntary medical male circumcision procedures for schoolboys over weekends. Patients seen by doctors at the old hospital must collect medicines from the pharmacy at the new hospital and are then required to walk back to the old hospital to drop off their files.
“Your confidentiality does go out of the door if you are walking around with your file in your hand, and if you are ill you don’t want to be walking between the two hospitals,” says Swigelaar.
HIV is not my whole life
*Pam Dlamini is seven months pregnant, and she and her partner are both HIV positive. Knowing their statuses, their decision to have a child wasn’t taken lightly. But more than having to weigh up the pros and cons as a private decision, one of the toughest parts of their journey to pregnancy was having to work with nurses who had little understanding or empathy for their situation.
“The nurses were very unkind, they kept saying things like, ‘Why do you want to have a baby when you are both HIV positive? You are not going to live long and if you die, who will take care of these children?’ ” says Pam. “They were not caring nurses.”
Pam has two children from a previous relationship, both of whom are HIV negative. Her first contact with the virus came 10 years ago when her sister – then aged eight – was raped and contracted HIV. Pam, her sister’s primary carer, was 21.
In that same year, 2004, Pam also found out that she was HIV positive. “I never felt sick at all, so I didn’t take any medicines,” she says from her home outside Piet Retief.
After 2011, though, her health started to deteriorate. She was living in Lenasia, outside Johannesburg, and working in the city. “I went from wearing a size 42 to size 38, then size 36, and I knew something was wrong.”
Pam fell pregnant and when she miscarried months later, she decided to go back to the clinic. In 2012 she started taking ARVs, which she took for only about a year. She then moved to Mpumalanga and didn’t bother to go to a new clinic for treatment.
Last year, when Pam and her current partner decided to have a child, she suggested mutual clinic check-ups, hoping to finally disclose to him that she was HIV positive. Though she had always insisted on using condoms during sex, she had never disclosed her status to him. The results came back, showing them both to be HIV positive. She has started taking ARVs to prevent mother-to-child transmission of HIV; her child is due this winter.
Pam says living in a new place makes it difficult to find people she can trust. But she has turned to local TAC field officers who help her to deal with issues of stigma, understanding the treatment regimens as they’re worked out to suit her, and generally giving her support when she needs it.
She says she is grateful that she has no side effects from taking ARVs, and she also realises now that defaulting on her treatment was not the best decision. “I can say that I am free, the HIV is not my whole life and my life is not extra bad because of the HIV. I’m looking forward to having my baby.”
The drug default dilemma
Next to Bheki Nzuza’s desk is a large cardboard box filled with medicines – discarded antiretroviral (ARV) medicines.
He is the operations manager at Piet Retief Hospital and on a daily basis his staff find discarded medicines that patients enrolled for HIV treatment in the hospital’s wellness centre are simply not taking, and dumping in hospital bins. Many of the containers are still in their boxes with their inserts, as they were issued.
Nzuzu flips through a book in which he’s recorded the data around defaulting. The information in the entries is almost always identical.
“People come to the clinic for their check-ups, they want to know what their CD4 count [a measure of the strength of their immune systems] is and they go home with the medication that they’re given, but many of them are not taking the medicines because they don’t feel physically ill.”
Patients who don’t understand their responsibility to take medication as prescribed are a drain on resources, says Nzuzu. Worse still, patients dump pills or sell them, possibly to be used as street drugs, which is common in the province.
Although some are dumping or selling their medication, there are clinics in the district where medicine shortages are a real problem and patients sometimes are sent home without the right drugs because essential medicines aren’t received on time.
Many patients don’t have the transport money to make an extra trip to clinics when they are told there aren’t medicines for them on their scheduled check-up days.
The high default rate is one of the reasons Nzuzu is not convinced that the government’s proposal to implement a centralised chronic medicines dispensary (CCMD) service will have the desired outcomes.
Patients in Piet Retief still have to make use of the dilapidated hospital; the new one is barely used.
“It does seem like a good idea … it could help shorten queues in hospitals and you can get the medicines to locations closer to people. But it won’t work because people want to see their doctors for confidential check-ups with every visit, but are not interested in taking the medicines until they are really sick,” he says.
Nzuzu says that only 12 of the 9?000 patients enrolled in the hospital’s ARV treatment service are good candidates for CCMD. These are the patients who stick to their meds, have fixed home addresses and the means to get to a CCMD collection point on predetermined dates.
As good as it gets
A scale takes centre stage in a dusty courtyard-cum-parking lot. It would look strange except that this space is also a makeshift waiting room at a clinic in the township of Embalenhle, outside Secunda.
There are three rooms in the small clinic. One is for consultations; another is an office. The third is the foyer housing a filing cabinet and a medical refrigeration unit. There are also stacks of boxes and, stacked in a corner, buckets of sealed biohazard medical waste that have not been collected for safe disposal.
Patients are sitting on the few chairs that have been set out in the courtyard, waiting to see a nursing sister at the clinic; there is no doctor on call. Most people have brought their own lunch because they expect to be there for the better part of the morning.
Rain or shine, hot or cold, this is where the patients must wait if they want medical attention. A nursing sister stands on the step outside the clinic and shouts out the names of patients from a stack of green clinic cards. A few people push forward to retrieve their cards.
Some people have questions. They try to find a gap to get the nurse’s attention. But they’re not pushy; they know they don’t have many choices. The answers they receive are brusque. They still don’t understand, but they have been dealt with.
The TAC has received a number of reports that there has been a shortage of antiretroviral drugs at this clinic, but nobody is prepared to speak on the record or to confirm any facts for fear of victimisation.
This is service delivery. This is as good as it gets here.
* not her real name
This story was published in the latest edition of the National Strategic Plan review report that was released this week. The review is published quarterly by HIV advocacy group the Treatment Action Campaign and social justice organisation Section27. It critically evaluates the health department’s progress with achieving the goals of its National Strategic Plan for HIV, sexually transmitted infections and tuberculosis
