Six months after Spotlight first reported on the plight of stoma patients experiencing shortages of colostomy and urostomy bags at Chris Hani Baragwanath Academic Hospital, users are still reporting shortages at various hospitals in the province, writes Thabo Molelekwa, despite authorities saying at the time that the shortages had been resolved.
Complaints have again surfaced of stoma patients at hospitals including Baragwanath, Helen Joseph, and Leratong, often not receiving the number of bags they need on a monthly basis.
Activists have also said the number of nurses who can provide stoma care in public health facilities is inadequate, with fewer than 100 for both public and private sector patients.
Because of this, and what Faizel Jacobs, an ostomate and one of the founding members of the South African Society of Ostomates (SASS) calls the “continued violation of the basic human rights of stoma patients”, the SASS now plans to lodge formal complaints with the Health Ombud in the Office of Health Standards Compliance and the Human Rights Commission.
Hard time coping
Jacobs says around 60 000 ostomates live with either a permanent or temporary stoma in South Africa.
A stoma is an opening in the abdomen that can be connected to either the digestive or urinary system to allow waste (urine or faeces) to be diverted from the body. There are three main types: urostomy (urine), an Ileostomy (from the small intestine), and a colostomy (from the large intestine). Reasons for getting a stoma range from cancer to Crohn’s disease.
Gauteng Health MEC Nomantu Nkomo-Ralehoko said there were 700 adult and 45 paediatric stoma patients by the end of last year receiving care at Baragwanath Hospital.
She said about 390 stoma patients receive treatment at Helen Joseph Hospital and about 90 at Leratong Hospital.
One patient, who asked not to be named, last week told Spotlight he was admitted to Chris Hani Baragwanath in July 2022 for diabetes-related complications. He had no idea he would be discharged with a stoma and that he and his family have a hard time coping with the state of his health.
“Because of diabetes I had to have my leg amputated,” he said, and was told that his stoma would only last six months after the procedure. In February, however, he says he was surprised to learn he would be living with a permanent stoma.
He said no one at the hospital taught him and his wife how to use the stoma pouch. He also said nurses always give him two pouches and tell them they will have to last a month.
“We don’t like how Baragwanath is treating us,” his wife said. “No one in the house knows how to handle the stoma and now we even use ice block plastics to cover the stoma, because we don’t have bags.”
He doesn’t want to return to the hospital, because he always has to fight to get his stoma pouches. “Without fighting, I wouldn’t even have those two bags.”
Another patient said when she went to Baragwanath on 27 March to collect her pouches there were none. While she had a plan for where she could get bags for herself, she wanted to find donations to help other patients at Bara on the same day and who also went without when nurses said there was no stock.
Although she managed to find some donated pouches for several of the patients, there were not enough for everyone.
By the end of last week when she went back, she still could not get the bags she needed.
Jacobs said many nurses tried to contact suppliers for donations. “Nurses are breaking their backs trying to help patients, but procurement [units] isn’t ordering.”
He said he had also liaised with several suppliers who confirmed they had received RFQs (requests for information on price, delivery, and other details), but none had been fulfilled. “Some hospitals have not had an order fulfilled at all during 2023. We are now in month four. Helen Joseph Hospital is one of them,” he added.
Patients previously told Spotlight hospitals said they were not ordering stoma products because there wasn’t enough money in the budget for the year ending in March. But there has been no improvement since the start of the new financial year.
This week Spotlight queried the provincial department’s budget for goods and services and specifically the budget for stoma products, but Gauteng Health spokesperson Motaletale Modiba said this information was not immediately available since the departmental budget votes are only tabled in May 2023.
No set protocols
Jacobs said fixing challenges with stoma care was not that complicated. “We are such a small minority in the population and are being discriminated against. (Many) clinicians have no idea what a stoma is. They may have a broad sense of it – that it’s an opening and your body’s waste goes out there. But they have no idea of the impact it has on an individual’s life,” he said.
On the clinical guidelines for how many bags stoma patients are supposed to receive monthly, Health MEC Nkomo-Ralehoko’s response showed there seems to be no set protocol followed by hospitals.
For example, at Baragwanath, the clinical guideline is to issue patients with at least 10 pouches per month. In other hospitals, like George Mukhari, the hospital said pouches were issued “according to every patient’s need”.
At Helen Joseph, they are “guided by procurement” and at Leratong there are no guidelines. At some district hospitals, like Bertha Gxowa, stoma patients only get two bags per month. The hospital said it has no set guidelines as it does do not have a stoma clinic or a nurse.
Acknowledging that stoma patients may occasionally not receive the number of stoma products they need, Nkomo-Ralehoko’s response shows that at Baragwanath, for example, patients are issued fewer bags when contracted suppliers cannot deliver ordered stock.
In such cases, “patients are educated on how to prolong usage so that what is issued can last”. Helen Joseph also cited procurement challenges and stockouts due to tenders not being awarded as reasons for the shortages.
Low stock continuing
Last year, at least 13 Gauteng hospitals, including Bara, had shortages of stoma pouches, affecting hundreds of patients.
Modiba said the standard practice is to issue 10 bags a month, “even though we know one bag should last four to five days to avoid skin irritation”.
Instead of supplying patients with 10 bags a month, however, he said some facilities supply about five bags for older patients and about eight for new patients. “This results in patients having to come back frequently if they need to use more than the issued number per month.”
Some stoma patients are prioritised as part of the healing-from-home programme in therapeutic services. Modiba said to ensure they always came back for a review, given the complications sometimes associated with living with a stoma, patients are often given the minimum required bags per month.
Earlier this month, Modiba confirmed Baragwanath had a “lower than usual” supply of colostomy and urostomy bags. In these cases, he says, patients are informed and also counselled. “Because of the low or no stock in neighbouring facilities, we also supply referred patients. Patients are informed and encouraged to return to the hospital for more if they have an urgent need.”
The department did not name the companies supplying the stoma products. “It is not always practical to stick to the same supplier. There are few suppliers in the market and fortunately, all are credible.”
Shortage of stoma nurses
The shortage of stoma nurses and skills is compounding the challenges in stoma care. According to SASS figures, there is one stoma nurse for every 600 stoma patients in both the public and private sectors.
A nurse who attended a stoma care training workshop last month told Spotlight, “We don’t have enough nurses specialising in stoma care, and training should be provided. Public hospitals lack qualified stoma nurses, so the private sector comes in to provide assistance.”
She said the pouches are customised to fit patients’ stomas and designed according to their skin type so it is important patients get the right systems, that fit them. However, she added, with the shortages, hospitals are giving patients urine pouches, which is wrong and doesn’t help at all.
“Currently, the government gets the cheapest pouches to save money but that doesn’t work, and the one-size-fits-all is also an issue. It is important to give patients enough pouches for a month and also supporting products to avoid skin irritations.”
A plan
Modiba said the Gauteng health department plans to train specialist nurses, including stoma nurse specialists.
“There is currently on-the-job training of stoma nurses through the private sector manufacturers of the medical equipment/stoma bags.” He added that there are only six stoma clinics in the province that provide stoma care, and the number of nurses trained in stoma care as short course or in-service training is nine.
The department is now “capacitating the Gauteng College of Nursing and is ensuring all nurse education institutions have the capacity to train all specialist nurses at NQF level 8”.
While nurses who specialise in stoma care often choose the private sector, he says the provincial health department is working on a plan to retain nurses working in stoma care in government facilities. “The programme on specialist training of nurses will have to be enabled by the review of the OSD (occupation-specific dispensation) to remunerate nurse educators and other specialist nurse categories to be at a level higher than they are now to attract and retain them where they are needed.”
This review of the OSD and other HR retention instruments will be done in the 2023-2024 financial year.
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