Treatment decentralisation needs an injection

Decentralised drug-resistant TB (DR-TB) treatment to clinics is being rolled out across the country. Or is it? NSP Review visited a number of Eastern Cape clinics and interviewed patients and health workers. The picture that emerged was one of bureaucratic and poorly functioning referral systems, and no system to keep track of patients. (The names of the clinics and health workers have been removed to protect their identity.)

It’s an unassuming building – small and almost square – looking more like an RDP house than a busy clinic. However, the people milling about outside and sitting patiently on the verandah waiting for an open seat in the inside waiting room, are a hint that this is a clinic, and a busy one.

To reach the East London clinic’s TB section – a room no bigger than a bathroom in a middle-class house – one can walk through the waiting area, where patients are squeezed in tighter than sardines in a can, or walk around the outside to the back, where the TB patients wait, exposed to whatever the East London weather is on the day.

Health workers are cautious about giving their names when interviewed, but are happy to share details.

There is one nurse taking care of 100 TB patients and 42 DR-TB patients, most of them past defaulters for a number of reasons – long distances to the clinic, long waiting times, drug side effects, painful injections, or not having any food.

Keeping track of patients who default is a massive challenge as the clinic has no telephone. It also serves a densely populated area where finding a patient can be an impossible task, despite the help of a handful of community health workers.

Currently patients with suspected DR-TB give sputum samples that are tested using the GeneXpert. If the test is positive for DR-TB, patients are required to go to Fort Grey TB Hospital on the outskirts of East London. Patients are supposed to be transported to Fort Grey by ambulance. But, nurses smile wryly, ‘Getting an ambulance to come here and fetch a patient is almost impossible. Firstly, we don’t have a phone to contact them and then we have to just hope and pray they come.’ Patients have to repeat this exercise every month. Report to the clinic, hope an ambulance arrives, collect their medication from the hospital, and return to the clinic, where it is administered daily.

Getting ill patients admitted is another challenge. Beds are scarce and patients are placed on long waiting lists.

Nurses speak of their serious concern that colleagues are contracting TB and dying. Once TB-infected nurses leave their posts, it can take months or years to have their positions filled. The critical N95 masks that prevent nurses from being infected have not been sent to the clinic for a long time, and health workers see patients in a small, stuffy room with tiny windows offering almost zero ventilation.

‘What can we do? If we do not do this, where will patients go,’ a nurse asks.

A doctor working in the area says there has undoubtedly been an increase in DR-TB. She says that decentralising DR-TB services looks good in policy papers, but the reality is that, with thousands of patients scattered between rural villages and in densely populated informal settlements, it is almost impossible to keep track of them.

‘For decentralisation to be successful, more people – community health workers – are required on the ground, and funds [are needed] to provide a stipend to those workers.’

She adds that despite the numerous challenges, there are many committed individuals who go the extra mile for their patients. She recalls a patient at a rural clinic outside East London who was unable to walk to the clinic for his daily injections. The nurse would drive to meet the patient at an intersection, where he would administer the daily injectable drug.

These same nurses are also known to visit patients at home if they are too ill to travel to the clinic. The clinic is based far from East London – more than an hour by car. The distance sets it up for the well-known challenges: Unreliable ambulance services, and hurdles to cross to get stock when it is in short supply.

Despite this, the health workers have managed to ensure that all patients in their care are cured. The clinic serves a population of 4 500 with almost a quarter needing regular care. The health workers at the clinic alternate shifts to meet those patients who need to get to work early in the morning, ensuring they are administered their treatment, especially the injection. In one case, the nurses arranged for a patient’s supervisor, a former nurse, to administer the injection at work.

“For decentralisation to be successful, more people – community health workers – are required on the ground, and funds [are needed] to provide a stipend to those workers.”

Referring patients to Fort Grey is also a massive challenge, with doctors at the hospital only seeing new patients on Tuesdays and Thursdays. This means that if a patient needs to be admitted on a Friday, they will have to wait until Tuesday. Clinics are also often told that both Fort Grey and the other TB hospital, Nkqubela, are full. Ill patients are sent home in the hope that they will survive until they are at the top of the waiting list.

One patient said: ‘We adhered to treatment because we wanted to be cured for our children’s sake and the clinic made is easy for us.’

At another clinic outside East London nurses lamented the poor access to patient transport. ‘This means patients do not come back for reviews, and lack of transportation is a major issue. When we asked the department for a car to visit patients, they told us to get a horse,’ said one nurse.