Philani Clinic – A timeline of failure

by  Ntiski Mpulo

A few meters from the entrance to Philani Clinic in Queenstown, opposite the

Peeling paint welcomes patients

gate, is a black-walled tavern. On weekdays, it’s as quiet as a church; but on weekends, music bursts out of its dark interior, cars line the street and patrons dance between them, holding beer cans and bottles.

The gates of the clinic are not secured, so anyone from the tavern is free to wander in; there is but one security guard on the premises. This poses a significant risk to the patients and nursing staff of the clinic.

“When we work on weekends, the drunks come and harass us,” says Sister Annelise Koti. “I don’t feel safe at all.”

Traditionally, the clinic opened from 08:00 till 16:30 on weekdays. Since 2013, following a directive from then-MEC for Health Sicelo Gqobana, nurses at Philani Clinic were instructed by the sub-district manager, Nonceba Bhabha to begin working weekends and public holidays.

The nurses have been forced to work on weekends without compensation, and this is taking a toll. Four nurses have resigned or been fired since this unilateral decision was handed down from the district office, leaving only eight nurses rotating shifts to cover weekends. On any given day, there should be three nurses at the clinic; because of staff shortages, only two nurses work on weekends.

The nurses have questioned the decision to operate seven days a week, and have requested written confirmation from the district manager that this was indeed mandated by the department. A memorandum from the district manager to the superintendent-general confirms that the resolution to open the clinic on weekends was never signed.

“We requested the minutes of this meeting,” explains Sister Koti. “We also asked for a policy that we should work extended hours, and we asked that we would be paid for public holidays and weekends.”

empty chairs on the
weekend while nuirses are forced to be on duty without pay

The sub-district manager did not respond to their requests. Instead, according to Sister Koti, pressure was placed on the operational manager.

“She said we must comply, and complain later. She never gave us options for contesting this thing,” says Koti.

“We asked them to give us something in writing to cover us if anything happens,” she says. “For example, there could be a medico-legal claim against one of us, and we wanted to be covered. The department of health will deny you. They will say, ‘You asked to work weekends yourselves.’”

Nurses’ pleas fall on deaf ears 

Nurses at Philani Clinic report being subjected to victimisation from the district office. They have repeatedly asked their union representatives to intervene on their behalf, with little progress in resolving the issue.

“In 2015, when we spoke with the unions, suddenly the minutes emerged,” explains Koti. “But these did not specifically refer to Philani Clinic operating for seven days a week. They said in the minutes that they were preparing for opening 24 hours. But we said, ‘You can’t prepare for 24 hours with such old infrastructure. This is an old clinic.’”

The clinic is over 100 years old, and badly maintained. Paint peels off the wall where damp is creeping up from beneath the ground. The foundation is reportedly sinking. A memorandum from the clinic committee states that there is often no water available; the clinic is equipped with a rainwater tank, which runs empty and is not refilled. The memorandum also cites insufficient equipment, including a fax machine that has been without ink for nearly five years.

The clinic has been the site of contention in the last three years, with residents forcing it to be closed on several occasions. The reasons for the shutdown are numerous; clinic committee member Luyanda Nogemane places the blame squarely on the unresponsive stance taken by the MEC for Health, Phumla Dyantyi. He claims that Dyantyi has placed politically connected individuals at the district office, instead of people who care about the community.

On 30 November 2016 the committee wrote a letter to Dyantyi, accompanied by 68 signatures. However, the matter remains unresolved.

The community shut the clinic for a day in March 2017, then again in May and

a rubbish dump right outside the clinic.

June of that year, citing the non-payment of nurses as one of the key issues. “We took our grievances to Bisho, and met with Mr Myezo,” says Koti.

The HR manager called a senior manager at the district office and was told that the nurses had been paid. He advised them to set up a memorandum of understanding between the nurses and the district, but this has not been put in place. Instead, the district office issued notices stating that the nurses were off duty without authorisation, and began withdrawing money from their salaries – amounting to as much as R1 500 – if they did not report for duty on weekends. At that time, Eastern Cape Health Department spokesperson Sizwe Kupelo is reported to have said that payments to the nurses were not completed because the nurses had not submitted claim forms – but Sister Koti tells a different story.

“They targeted us,” says Koti. “In April they withdrew the money. The HR clerk would bring ‘leave without pay’ forms, which we refused to sign.”

Staff morale at the clinic is at an all-time low. Those who remain are burnt out. Between the three nurses on duty, they serve approximately 200 people per day; and on the weekends, when there are only two nurses on duty, there is no clerk to receive patients, so this task must also be performed by the nurses.

“We try not to let our issues affect the clients,” explains Koti. “Although clinic hours are 08:00 to 16:30, it is rare for us to leave at that time. We stay till after 6pm sometimes. We often don’t have time for lunch – forget about tea breaks.

“We want to be treated with dignity,” says Koti. “We have families too.”

 

 

Priority-Setting, Social Justice and Human Rights in the Eastern Cape

By Marije Versteeg-Mojanaga, Rural Health Advocacy Project

The stories of health care users experiences with the health system as published by Spotlight are devastating. Various factors play a role when patients’ rights are violated, such as poor planning, inadequate HR management, budget cuts, healthcare worker attitudes, medicine stock-outs, poor policy implementation, and well-intentioned policies that fail to address the rural context.

While there is often an interplay of factors ranging from national down to local issues, ultimately there can be no excuse when lives are lost and people experience great, avoidable suffering. In this articlepublication, I make some comments on the relation between systemic factors and deeply entrenched inequities, and on people’s struggles in realising their health rights at a local level in the Eastern Cape. I will focus on budgets and Human Resources for Health (HRH).

It is no secret that health overall, including in the Eastern Cape, has been deeply affected by the political and economic crisis that has shaken our country to its core. By Treasury’s own admission, as published in the South African Health Review (2017), health expenditure has flatlined since 2011/2012:

The picture gets worse if we take into account medical inflation, salary increases, new policy priorities and growing medico-legal claim pay-outs in the Eastern Cape – to the tune of R196 million in 2016 – which means that in actual fact, the budget for health has decreased.

In its annual report for 2016, EC Health points to the fact that under-spending in non-core health personnel posts in District Health Services to the amount of R84 255 000 (84 million rand!) has been used to fund the settlement of medico-legal claims – claims that are often caused by health-system failures. While savings on non-core posts complies with Treasury guidelines, having insufficient cleaners, kitchen personnel and procurement officers at the local level does ultimately affect the quality of healthcare services.

No matter how we look at it, in real terms the budget for health is decreasing; and this report shows not only how it affects access to health care, but also describes those most deeply affected – namely impoverished communities who often have no alternatives for care, besides digging deeply into personal pockets to book private taxis to facilities further away.

The stories of affected people covered by Spotlight originate from areas in the Eastern Cape that historically have been the most neglected. The map below indicates the persistent inequities affecting this province, with the red lines and dark blue areas representing the former Eastern Cape homelands; people living here today still experience the highest levels of deprivation, from material deprivation (e.g. lack of access to household items, such as a fridge or a phone), to living-environment deprivation (e.g. access to running water and electricity), educational deprivation and employment deprivation (Noble et al, 2014)[1]

Added to these indicators of vulnerability and inequity is the rural context, i.e. terrains difficult to navigate, long gravel roads to facilities, and dispersed populations, which further complicate access to health services for disadvantaged communities.

From a transformative and social justice perspective, government has an obligation to take this background into account when planning healthcare services and prioritising budgets and health personnel. This starts with allocating sufficient funds to health from total revenue. But while the Eastern Cape Department of Health might rightfully argue that its current health budget is insufficient to provide quality healthcare services immediately to all who need them, questions ought to be asked – whether the department, when implementing austerity measures, adequately protects and prioritises those communities most in need, most disadvantaged, and with the least access to resources to protect from further household shocks due to health-service rationing?

Family in OR Tambo District

In our publication, Cutting Human Resources for Health – Who Pays[1] (2017), the Rural Health Advocacy Project reports on its investigation into the impact of budget cuts on spending on human resources for health in OR Tambo District. According to the District Health Barometer (2017), OR Tambo District has the third-highest rate of teen pregnancy in the country, with 11.5% of deliveries in health facilities being to women under the age of eighteen (compared to the national average of 7.4%). This figure reflects poor levels of education and access to reproductive health services, and indicates risk of poor health outcomes for infants and children.

The maternal mortality rate of 198 (per 100 000 live births) is also substantially higher than the national average (133), reflecting poor access to health care during pregnancy, birth and postpartum. This is reinforced by the fact that only 40.7% of mothers delivering in facility record a postnatal healthcare visit within six days of birth.

Tuberculosis is rife in the district, with a reported incidence of 820 per 100 000 population, nearly 30% higher than the national rate of 593 per 100 000. Immunisation coverage in children is also well below government targets in this part of the country, with only 73.2% of all children in a sample of 470 children tracked over time in OR Tambo District being fully vaccinated at 24 months (Le Roux et al, 2017[2]).

We also tell the individual stories of people trying to navigate the health system to seek care for their loved ones; such as a grandmother from Nyandeni Sub-District in OR Tambo, who carries her 15-year old grandchild with cerebral palsy on her back to access the clinic. Soon she will no longer be able to carry his weight. Her grandson is malnourished, and he urgently needs to see a dentist and a dietician and have a change of medication. But the lack of such health cadres locally and the costs of travelling make it impossible for the grandmother to access these types of services. In essence, this means the household is left to fend for themselves.

Mother on her way to hospital

The hospital rendering care to the people of Nyandeni is Canzibe Hospital, serving a population of 143 000. For a long time, this hospital has not had adequate therapy services for the prevention and management of disability. Within a period of a year the hospital also lost six of its seven doctors – for various reasons, such as completion of community service, and doctors returning to their countries of origin. It took an intensive multi-stakeholder advocacy campaign of 10 months to have the doctor vacancies filled.

 

In the meantime a lot of harm was done, with sick patients travelling to further-away hospitals at their own cost, or deciding not to seek care at all because of the unreliability of the system and the effort and expense involved. Clinics stopped referring patients, ‘as there is no doctor available’. This in turn impacted utilisation rates, which inform budget allocations; and the unmet health need in the community increases.

Canzibe hospital today has no occupational therapists; nor does it have speech or audio-therapists, and 143 000 people rely solely on one part-time volunteer physiotherapist and one assistant. (The creation of therapy Community Service (comserve) posts for 2018 may bring some relief.) However, there is no dentist for Canzibe, and no community health workers, apart from those employed by a very well-run service delivered by an NGO – which covers only two out of 13 wards, but which demonstrate the enormous need for and impact that can made by community health workers.

The situation in Nyandeni Sub-District is just one example of many. While collaborative advocacy made a difference in this case, and helped mobilise resources for health care for this sub-district, health systems planning ought not to depend on outside advocacy. It should be based on rational, evidence-based planning tools that prioritise the most vulnerable residents in the country, first and foremost.

The release of recent organograms in the Eastern Cape makes one hold one’s breath for what more lies ahead, with smaller rural facilities facing significant downscaling; leaving a facility such as Canzibe without a CEO position, and more junior staff responsible for time-consuming and important administrative matters, such as motivating for the filling of healthcare-worker vacancies.

An analysis of rehab therapist comserve allocations further reveals very concerning inequities. In 2017, of all community service posts for therapists in the province, 30% were allocated to rural facilities, with posts for 2018 remaining disappointingly low at 31%. What is worse is that some urban facilities receive six or seven therapists, while a facility such as Isilimela Hospital – also in OR Tambo District, and serving impoverished rural communities – has no allocation at all.

To further aggravate the situation, Isilimela did have comserve therapists in 2017. Without any permanent posts and no new comserve posts, where does this leave the current patients of this catchment population? While difficult decisions need to be made when budgets shrink, we cannot take away services.

When we are faced with a financial and political crisis and a shrinking Government purse, how we set priorities matters more than ever. As a collective of citizens, communities, NGOs and other stakeholders, we can question whether health care is getting its fair share; and whether within health we are protecting the most vulnerable. We need to call for innovative solutions, such as free and reliable patient transport services; promote cost-effective measures that will improve access for the people most left out, such as investing in community healthcare workers – which, not unimportantly, also creates jobs that will lift households and communities out of systemic poverty.

But as we have seen, we must be very critical of approaches that focus primarily on utilisation rates and economies of scale, as they discriminate against historically marginalised groups. Beyond maximising health outcomes through cost-efficiencies (utilisation rates and economies of scale), the WHO urges health systems to address two other (equally important) health-system goals: 1) reducing inequities, and 2) minimising the financial burden on patients.

This means taking into account the rural location, whether or not communities can access alternative services without shifting transport costs to patients, and protecting and prioritising poor and marginalised patient groups and communities. Currently, we are performing poorly on these principles of a just health system; and the human impact is staring at us in this report.

 

 

[1] http://www.rhap.org.za/cutting-human-resources-health-pays/

[2] http://www.scielo.org.za/scielo.php?pid=S0256-95742017000100024&script=sci_arttext&tlng=pt

 

 

 

 

 

 

 

 

 

[1]www.econ3x3.org/sites/default/files/articles/Noble%20et%20al%202014%20Former%20homelands%20FINAL.pdf

Let’s make AIDS councils work

by Vuyokazi Gonyela, SECTION27

Provincial AIDS Councils (PACs) should be chaired by Premiers, and District AIDS Councils (DACs) by mayors. All councils should meet at least once a quarter – but many do not. If your DAC or PAC is not meeting, write to your Premier or mayor to urge them to organise and chair these meetings. Once we are at the meetings, it is up to us to use them to ensure we get an effective, non-corrupt response to HIV, TB and STIs in our provinces or districts.

Send an e-mail to tell us about your PAC or DAC experiences.

Seven questions to ask at your PAC

Not sure what to say at Provincial AIDS Council meetings? Here are some ideas for questions you could ask

1.    South Africa’s new NSP envisages an ambitious new HIV Counselling and Testing Campaign. When are we starting to implement this HCT campaign in our province.

Here is the relevant part of the NSP, if you want to quote it in the meeting:

“A new national HIV testing effort to find the remaining people who don’t know their status and those who become newly infected will be strategically focused on optimising testing yield. Testing will be decentralised, and expanded testing services will be delivered in and outside health facilities, e.g. in workplaces and community settings. Specific efforts will be made to close testing gaps for men, children, adolescents, young people, key and vulnerable populations, and other groups who are not currently accessing HIV testing at sufficient levels.

“The importance of at least annual HIV testing will be emphasised, especially for young people. Self-screening will be rolled out as part of the strategy to expand HIV testing, and to close testing gaps. A major push will be made to ensure 100% birth-testing of newborns exposed to HIV, and of provider-initiated counselling of mothers and testing for all children up to 18 months to identify those who have acquired HIV through breastfeeding. All children of HIV-positive parents will be tested for HIV. Every person tested for HIV will also be screened for other STIs, as well as for TB.”

2.  The new NSP says that the tracing of TB contacts must be prioritised; and that it envisages intensified TB case-finding in key populations, “including household contacts of people with TB disease, healthcare workers, inmates, and people living in informal settlements.” What are we doing to step up contact tracing and active case-finding in our province?

Here is the relevant part of the NSP, if you want to quote it in the meeting:

“Every person who is tested for HIV must also be screened for TB, as must all TB contacts. Tracing of TB contacts is especially urgent for DR-TB, and will be prioritised. This Plan envisages intensified TB case-finding in key populations, including household contacts of people with TB disease, healthcare workers, inmates, and people living in informal settlements. People with diabetes and every child contact of an adult TB patient will be screened. All patients suspected to have TB will receive appropriate diagnostics, including GeneXpert MTB/RIF as an initial diagnostic, and rapid confirmation of results.”

3.    The NSP sets important national targets. What are our provincial targets relating to reducing new HIV infections and reducing new cases of TB?

Setting provincial targets is essential if we wish to create greater accountability in our province. It also helps focus and direct the work that needs to happen in the province. Yet most provinces do not have targets. Getting your province to set ambitious and concrete targets will be an important achievement.

Some key national targets in the NSP for which we require provincial equivalents are as follows:

  • Reduce new HIV infections to under 100 000 per year by 2022.
  • Reduce TB incidence by at least 30%, from 834/100 000 population in 2015 to fewer than 584/100 000 by 2022.
  • 10 million people should receive an HIV test every year.

4.   Can the Department of Health please provide us with detailed, up-to-date statistics for our province on our progress towards the 90-90-90 targets for HIV and the 90-90-90 targets for TB?

The 90-90-90 targets for HIV and TB are at the centre of the NSP. To create local accountability, and to identify areas that need work, we should track progress against these targets within our provinces, not only at national level. As members of AIDS councils, you have a right to this information.

For HIV, the 90-90-90 targets for provinces are:

  • By 2020, 90% of all people in the province living with HIV will know their HIV status.
  • By 2020, 90% of all people in the province with diagnosed HIV infection will receive sustained antiretroviral therapy.
  • By 2020, 90% of all people in the province receiving antiretroviral therapy will have viral suppression.

For TB, the 90-90-90 targets for provinces are:

  • By 2020, 90% of vulnerable groups in the province will have been screened for TB.
  • By 2020, 90% of people in the province with TB will have been diagnosed and started on treatment.
  • By 2020, 90% of people in the province on treatment will have been successfully treated.

5. What is the status of our provincial implementation plan (PIP)?

The PIPs may sound boring, but they are the plans that must make the goals and broad strategies of the NSP a reality in the communities across our provinces. By engaging in these plans, we can help improve the HIV and TB response in our provinces. Developing these plans is some of the most important work that AIDS councils will do. Once they have been developed, adapting these plans over time and monitoring their implementation will be just as important. In short, if you are on a PAC, part of your responsibility is to know exactly what is going on with your PIP.

In addition to the above question, here are some follow-up questions you could ask:

  • Is the implementation of the PIP in our province fully costed?
  • Where is the money going to come from to implement our PIP?
  • Do we have the human resources to implement our PIP?

6.  Can the Department of Health please provide us with detailed statistics on the best- and worst-performing districts in our province?

‘Best’ and ‘worst’ can be measured in different ways. For that reason, it might be worth asking for more specific indicators of how districts are performing. Here are some examples:

  • What are the viral load coverage rates for each of the districts in our province? (Viral load coverage tells you whether all people on HIV treatment are getting viral load tests, as they are supposed to. If a district has a low viral load coverage rate, then you know there is a problem in that district, because people are not getting the tests that they are supposed to get.)
  • What are the districts in our province with the most medicine stock-outs?
  • What are the TB treatment success rates for each of the districts in our province?

Six questions to ask at your DAC

Not sure what to say at District AIDS Council meetings? Here are some ideas for questions you could ask.

1. South Africa’s new NSP envisages an ambitious new HIV Counselling and Testing Campaign. When are we starting to implement this HCT campaign in our district?

Here is the relevant part of the NSP, if you want to quote it in the meeting:

“A new national HIV testing effort to find the remaining people who don’t know their status and those who become newly infected will be strategically focused on optimising testing yield. Testing will be decentralised, and expanded testing services will be delivered in and outside health facilities, e.g. in workplaces and community settings. Specific efforts will be made to close testing gaps for men, children, adolescents, young people, key and vulnerable populations, and other groups who are not currently accessing HIV testing at sufficient levels.

“The importance of at least annual HIV testing will be emphasised, especially for young people. Self-screening will be rolled out as part of the strategy to expand HIV testing, and to close testing gaps. A major push will be made to ensure 100% birth-testing of newborns exposed to HIV, and of provider-initiated counselling of mothers and testing for all children up to 18 months, to identify those who have acquired HIV through breastfeeding. All children of HIV-positive parents will be tested for HIV. Every person tested for HIV will also be screened for other STIs, as well as for TB.”

2.  The new NSP says that the tracing of TB contacts must be prioritised; it envisages intensified TB case-finding in key populations, “including household contacts of people with TB disease, healthcare workers, inmates, and people living in informal settlements.” What are we doing to step up contact tracing and active case-finding in our province?

Here is the relevant part of the NSP, if you want to quote it in the meeting:

“Every person who is tested for HIV must also be screened for TB, as must all TB contacts. Tracing of TB contacts is especially urgent for DR-TB, and will be prioritised. This Plan envisages intensified TB case-finding in key populations, including household contacts of people with TB disease, healthcare workers, inmates, and people living in informal settlements. People with diabetes and every child contact of an adult TB patient will be screened. All patients suspected to have TB will receive appropriate diagnostics, including GeneXpert MTB/RIF as an initial diagnostic, and rapid confirmation of results.”

3.  The NSP sets important national targets. What are our district targets relating to reducing new HIV infections and reducing new cases of TB?

Setting district and provincial targets is essential if we wish to create greater accountability in our districts and provinces. It also helps focus and direct the work that needs to happen at district level. Yet most districts do not have targets. Getting your district to set ambitious and concrete targets will be an important achievement.

Some key national targets in the NSP for which we require district and provincial equivalents are as follows:

  • Reduce new HIV infections to under 100 000 per year by 2022.
  • Reduce TB incidence by at least 30%, from 834/100 000 population in 2015 to fewer than 584/100 000 by 2022.
  • 10 million people should receive an HIV test every year.

4.  Can the Department of Health please provide us with detailed, up-to-date statistics on our progress towards the 90-90-90 targets for HIV and the 90-90-90 targets for TB in our district?

The 90-90-90 targets for HIV and TB are at the centre of the NSP. To create local accountability, and to identify areas that need work, we must track progress against these targets within our districts and provinces, and not only at national level. As members of AIDS councils, you have a right to this information.

For HIV, the 90-90-90 targets for districts are:

  • By 2020, 90% of all people in the district living with HIV will know their HIV status.
  • By 2020, 90% of all people in the district with diagnosed HIV infection will receive sustained antiretroviral therapy.
  • By 2020, 90% of all people in the district receiving antiretroviral therapy will have viral suppression.

For TB, the 90-90-90 targets for districts are:

  • By 2020, 90% of vulnerable groups in the district will have been screened for TB.
  • By 2020, 90% of people in the district with TB will have been diagnosed and started on treatment.
  • By 2020, 90% of people in the district on treatment will have been successfully treated.

5.  What is the status of our provincial implementation plan (PIP)? And if we have a District Implementation Plan (DIP), what is the status of that?

The PIPs and DIPs may sound boring, but they are the plans that must make the goals and broad strategies of the NSP a reality in our communities. By engaging in these plans, we can help improve the HIV and TB response. Developing these plans is some of the most important work that AIDS councils will do. Once they have been developed, adapting these plans over time and monitoring their implementation will be just as important. In short, if you are on a DAC or PAC, part of your responsibility is to know exactly what is going on with your DIP and/or PIP.

In addition to the above question, here are some follow-up questions you could ask:

  • Is the implementation of the PIP and DIP in our district fully costed?
  • Where is the money going to come from to implement our PIP (or DIP)?
  • Do we have the human resources to implement the PIP (Or DIP)?

6.  Can the Department of Health please provide us with detailed statistics on the best- and worst-performing clinics in our district?

‘Best’ and ‘worst’ can be measured in different ways. For that reason, it might be worth asking for more specific indicators of how clinics are performing. Here are some examples :

  • What are the five clinics in our district with the lowest viral load coverage rate? (Viral load coverage tells you whether all people on HIV treatment are getting viral load tests, as they are supposed to. If a clinic has a low viral load coverage rate, then you know there is a problem at that clinic, because people are not getting the tests that they are supposed to get.)
  • What are the five clinics in our district with the most medicine stock-outs?
  • What are the five clinics in our district with the worst TB treatment success rates?

 

Funding by Faith

By Ufrieda Ho, Spotlight

Even for a woman of faith, breaking bad news is never an easy thing to do.

When Sister Krystyna Ciarcińska called a meeting for the 30 caregivers of the

Sporting their blue golf shirts are some of the Koinonia Orphans caregivers who have
changed the lives of at least 900 children in 13 villages in Uzimkhulu. From left are
Ntombovuyo Langa, Bongekile Dlamini and Gloria Tsezi. In front is Lodiwe Ndzimande.

Koinoina Orphans Project in rural Umzimkhulu, KwaZulu-Natal at the end of winter this year, she did so with a heavy heart.

“I was so sad and I didn’t know what I was going to say to them,” she says, remembering that day. In her hand was the letter from the South African Catholics Bishops Conferences (SACBC) notifying the Lourdes Mission, where Sr Krystyna is a consecrated sister of the Koinonia John the Baptist community, that funding for the two-year-old Koinonia Orphans Project she headed up, would run out by the end of September.

“Sometimes when we call special meetings it’s because we have been given unexpected donations of blankets, mattresses or something, so the caregivers were very excited. But instead I had bad news to tell them; it was terrible,” she says.

That official funding has dried up and it has been a blow. But the Lourdes Mission has fought to continue with the project even though for the past few months paying the R35 000 a month bill it costs to run the project has never been a certainty

“Prayers and providence,” says the irrepressible Sr Krystyna with a smile, at how donations have materialised. Still, she’s only too aware that the long-term sustainability of the project is in jeopardy.

The Koinonia Orphans Project has over the last two years become a vital lifeline for over 900 children registered in the project and their families from the 13 villages that surround the mission station. The 30 caregivers who receive a stipend for their service also rely heavily on this source of income.

The project that started in October 2015 focuses on supporting children in vulnerable households, many are AIDS orphans. It’s part of the Catholic Church’s response to HIV/ Aids that was officially started in the country in 2000.

Withdrawal of PEPFAR funds

The SACBC has been a beneficiary of the United States’ Pepfar (President’s Emergency Plan for Aids Relief) funding since the fund came into being officially in 2004. The shift in foreign policy under the Trump administration has however, sparked concern for critical long-term financial support from Pepfar.

According to Mrudula Smithson, director of the SACBC AIDS Office, Pepfar funding to the SACBC has been reduced by around half for the next financial year. While Smithson says they don’t disclose the actual amounts, she says their projects have been hit badly.

“We receive three streams of Pepfar funding for our projects that all focus on

The home headed by Christina
Mtolo (far right), her daughter Gloria
Mbhele (far left) and with them
Gloria’s children Anelisiwe Mbhele,
their friend Thembalethu Tshabalala,
and Gloria’s other child Senelweko.
They are one of the families that are
part of Koinonia Orphans Project.

orphaned and vulnerable children – all three have been severely affected while our target of the number of children we want to reach has increased significantly,” she says.

Smithson adds that the SACBC Aids Office programmes currently reaches 45 000 children. “We are very concerned that the small projects around the country especially now have to find their own way to fund their programmes or they’ll have to shut them down,” she says.

At this point, Pepfar will continue to fund projects in South Africa till September next year. In May, the US Embassy in Pretoria announced that Pepfar would support South Africa’s HIV/AIDS and TB programmes till September next year and would support the National Strategic Plan (NSP)’s 2017-2022 programmes for HIV, TB and Sexually Transmitted Infections. An additional U$51-million in funding was approved to support South Africa’s voluntary male medical circumcision programme. Since 2004, Pepfar has invested over U$5.6-billion in South Africa.

A million realities away from decisions made in boardrooms in capital cities, Koinonia Orphans Project caregivers must still get on with visiting families under their care.

Giving care

With basic training in nutrition, hygiene and counselling, caregivers help make sure people adhere to their medicine regimes and have food to eat, often they share from their own meagre provisions. They cook and clean, fix homesteads, and help plant food gardens. They also help register children for birth certificates and identity documents. They do school monitoring, help with homework and ensure that children have school uniforms, without which they’re not allowed to attend school.

Another prong of the Koinonia Orphans Project has been twice yearly voluntary HIV/AIDS testing and counselling days targeted at children but also reaching adults who live in communities surrounding the Lourdes Mission.

In their last testing campaign held in August they were able to test 400 people, working in collaboration with local clinics that provided the pin-prick test kits.

“Knowing their status early is important so that they can start treatment early,” says Gloria Tsezi, one of the Koinonia caregivers in the village of Moyeni.

Tsezi visit homes where the burdens facing families is heavy. At the home of Busisiwe Khambula and her three children, Tsezi looks on as Khambula cradles in her lap the head of her eldest of three children, Olwethu (18). He is severely disabled and often suffers from uncontrollable fits.

“Sometimes the clinic tells me there are no medicines for his fits, then I have to go to Rietvlei Hospital. Sometimes I just lie him down flat and wait till the fit is finished – it hurts my heart too much,” Khambula says. Transport to get to the hospital costs her R200.

Tsezi and Khambula also tell of Khambula’s allegedly abusive relationship with the mostly absent father of her children. Abuse is another load that women in this remote district of KZN must carry.

Tsezi says: “He threw away all her pots and burnt all the children’s documents so I had to help get new identity documents for the children.

“I come to look after Olwethu and the two smaller children, Jabulile and Simthanda, when Busisiwe must go out. I give Olwethu soft porridge and milk, it’s the only thing he can eat – he likes it,” she says, proudly wearing the sky-blue Koinonia golf shirts that have become the uniform of the projects’ caregivers.

A difficult life

A few villages away in Riverside, a mother tells of her trials of living with HIV and the devastation of some years ago when she found out that one of her children, an 11-year-old girl, is also HIV positive. The child has also suffered from TB, she says.

They have a vegetable garden but sometimes there isn’t enough food for a square meal – essential for those taking ARVs. Riverside was also without water for nine months this year.

In another village Tryphina Mkalane is grieving for her daughter who died just months ago. It’s added two more grandchildren under her care, bringing to five the number of young ones who live in her rondavel.

One of the children turns 18 soon. Mkalane worries she will not find a paying job. At the same time it will mean she’ll lose a social grant that goes towards paying for groceries, transport and school supplies.

“One of my other daughters is in Durban. She’s been trying to find a job for over a year now. We send her the grant money so she can pay rent in Durban,” says Mkalane, speaking through her caregiver, Lucinda Dlamini.

For Sr Krystyna, who grew up in Poland and arrived in South Africa from Spain first in 2013 then permanently since April 2014, helping to lighten people’s challenges bought on by the collision of multiple miseries has become part of her life’s work.

Every sad story breaks her heart, but not her faith. Her childhood fascination with Africa has turned into the place she now calls home. In return the community has embraced her as their own, there are even little girls bearing her name – spelt the Polish way – the mothers and the nun say with a laugh.

It was in 2010 that the arduous process of rebuilding the Lourdes Mission and their cathedral first started under invitation by the local bishop to Father Michal Wojciechowski, who now heads the Koinonia John the Baptist community in Lourdes.

The mission station and cathedral date back to 1895. They were built by Trappist monks but had been given over to neglect and abandon for decades. Brick by brick the community has worked to rebuild the twin-towered cathedral and the living quarters for the handful of nuns and brothers who keep the mission alive.

There’s still a mountain of work to be done, like restoring a burnt out convent and an adjoining boarding school.

Every day there are new needs that present at the Lourdes Mission’s doors. The sisters, brothers and Father Michal open their arms to it all: a woman and her children who have gone three days without a meal; the shattering news of a teenage suicide; someone needing help with homework or just seeking out comfort and a prayer – and of course, the on-going question of how to fund the Koinonia Orphans Project for the the long-term.

But the cathedral is a beacon of joy and spiritual light. It’s packed to capacity for Mass each Sunday, the mission’s food garden and orchards now thrive as a symbol of new hope. Funding is sorely needed here; faith in action though, grows with abundance.

BURDEN OF THE GENERATIONS

When the rain sweeps in over the hills of Umzimkhulu and the winds follow, the rolling hills turn to mud and muck. Mist and chill wrap around rondavels with little forgiveness.

Gogo Alexsia Njilo (95) calls this remote part of southern KwaZulu-Natal

95-year old Alexsia Njilo can barely look after herself and says here two teenage grandsons don’t give her much assistance.

home. On a soggy, cold afternoon, the nonagenarian tends a steel teapot warmed on burning firewood in the centre of her rondavel. In-between she shoos away chickens pecking on the dung-mud floor, also seeking the mercy of warmth. Njilo lives with two teenage grandsons here that she mumbles are no good and no help to her. They come and go as they please, she says.

“I won’t cook tonight because they will just eat all my food,” she says in Zulu, I will drink tea for my dinner, she says.

So much adds to Njilo’s hardships: maladies of old age; few opportunities or hope for young people in this remote village and little infrastructure and resources to make life easier for a family living in poverty in the Harry Gwala district. The district has been in the news of late for political killings, cases of corruption and municipal mismanagement, also lack of infrastructure and pressing needs for basic services.

Njilo’s is one of the vulnerable households under the care of the Koinonia Orphans Project, run by the small community of consecrated sisters and brothers from the Catholic Church’s Koinonia John the Baptist community, based at the Lourdes Mission in a neighbouring village.

The 95-year-old’s Koinonia caregiver is the newest and youngest in the project: 19-year-old Thembile Dzanibe, who joined them in the middle of November.

Dzanibe finished her matric in 2016 and had been looking for work ever since.

“Many young people are in the same situation as me. Here in the rural areas there are no jobs or opportunities, nobody has work, they just have to sit at home. I applied for bursaries to study but I wasn’t accepted,” she says.

Added to this she says there’s a growing drug problem and a deep-rooted crisis of alcohol abuse that often leads to violence and criminality. Teenage pregnancy is also common and HIV/AIDS continue to ravage the community.

As a born-free, Dzanibe had hopes of studying to become a teacher. She says: “Actually my dream is to open a crèche, I love children.”

But both dreams have stalled.

“I’m happy to be a caregiver this year, I think I will be able to look after Gogo and the two boys, even though I don’t know if they’ll listen to me,” she says, sitting inside Njilo’s hut.

Gogo’s face does light up to greet her young caregiver but she’s also lost to tiredness and her own thoughts.

For Bertha Mia, the co-ordinator of the Koinonia caregivers, the role that Dzanibe has committed to is a big one.

“You need patience to do this job; you also need to treat every person with dignity. You have to work hard and be honest,” says Mia.

Dzanibe nods as Mia passes on this advice.

Community caregivers take on an intimate, sometimes almost impossible task. They’re a pillar that props up the most vulnerable in society, yet as in the case of the Koinonia Orphans Project they’re also first to fall when funding dries up.

 

Spotlight Issue 4 is out today!

In this issue: A profile of Free State MEC for Health Butana Khompela; A guide to making AIDS councils work; TAC on the state of our  hospitals; Doctors blow the whistle on orthopaedic nightmare; A special focus section on healthcare in the Eastern Cape; Linda-Gail Bekker, Peter Piot and other experts on the state of the HIV and TB response on WAD 2017; Mark Heywood on state capture and the right to health; The latest TB stats; A close look at who is funding TB research; An inside look at PrEP at tertiary education facilities; and more.

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