Maverick Citizen

SPECIAL INVESTIGATION

Stoma patients suffer indignity and pain due to maladministration, corruption and health department uninterest

Stoma patients suffer indignity and pain due to maladministration, corruption and health department uninterest

A Daily Maverick investigation has revealed the shocking and undignified ways in which stoma patients are being treated in the public health sector. Because of shortages of colostomy pouches, some patients have resorted to using plastic bags glued and taped to their abdomens.

Living with a stoma, a small opening in the abdomen which is used to remove body waste such as faeces and urine into a collection bag, called a colostomy, urostomy or ileostomy pouch, is difficult at the best of times. The operation that results in a stoma is life-changing and people who have undergone it often face stigma and discrimination afterwards. It is not something that is talked about, and as a result ostomates, people who have a stoma, often live with shame and fear, ostracised by friends and even family — despite the fact that a positive and productive life is fully possible.

This makes the medical care and support of ostomates all the more important. 

However, in September 2022, reports surfaced that Chris Hani Baragwanath Academic Hospital (CHBAH) had run out of colostomy bags, causing indignity and suffering among patients. The shortage appeared to have been “resolved” after the threat of litigation by the NGO SECTION27 and after intervention by the Gauteng Department of Health (GDoH). 

But 10 months later, according to patients and doctors, the situation has not got any better.

Recently, Daily Maverick was contacted by several senior health workers, who described the situation facing ostomates in Gauteng as a result of continued shortages of pouches and lack of access to specialist care in public health facilities.

The indignity ostomates are still subject to is painful to describe.

For example, Daily Maverick has seen pictures, taken in March, of a patient with plastic bags glued and taped on to his abdomen; another was fitted with a urostomy pouch, when what is needed is a colostomy pouch (the former is for urine, the latter for poo).

Ill-fitting bags leak and cause great discomfort. One nurse we talked to spoke of some ostomates committing suicide, after being rejected by their families and losing jobs.

In a lengthy interview, a woman in her mid-thirties described how after having a colostomy at CHBAH, she was discharged within days without being educated and supported on the basics of how to care for herself. “I had to do it on my own… it’s so hard,” she said.

She says she was given just one colostomy pouch for a month: “Imagine being given just one piece of toilet paper for a month. This is where we poop in.”

The woman, who says she’s “waiting for the end”, decries the lack of compassion and care shown by surgeons and nurses alike.

“I’ve been told they have no bags, and we must do what we can. There were no bags until two weeks ago. Even now, five bags for a month is not enough. I can’t handle it. If I have to reuse the same bag for a month, you won’t see me in public.”

“The problem is that within the government system, there’s no way to get answers. We have to take what’s dished out to us.”

“I can’t go on,” she said in a conversation in which her pain and trauma were constantly on the surface. 

‘Don’t mention my name’ 

Daily Maverick was informed by several people that after the recent increase in complaints about shortages of pouches in Johannesburg, a lengthy meeting was held on 21 June at Helen Joseph Hospital (HJH) to address the crisis. After the meeting, one of the people present, who had advocated for the patients, was warned by his family to back off or he would “end up like [murdered Gauteng Department of Health whistle-blower] Babita Deokaran”. He was told that corruption in the GDoH is “much bigger than you think; it goes from bottom to top and through the top”.

stoma

The effect of state patients not receiving pouching systems. (Photo: Supplied)

The senior health worker who told us this admitted that she too was scared, but seeing the state of her patients had compelled her to speak out.

“I had a harrowing week last week, I battled to sit through it,” she said, her voice breaking mid-sentence.

To verify these allegations, we contacted a senior doctor at CHBAH. She asked not to be named, but said that she had been told the shortages had been sorted out after being exposed in the media last year. She said the shortages (again) were caused by who gets the tender and companies that act as middlemen, but have neither the capacity nor the knowledge to supply the product.

This was confirmed by two other people we spoke to, who alleged that electrical companies had obtained tenders, acting as middlemen between manufacturers and patients.

The doctor also pointed to a problem with “putting people with no experience and training into running the [stoma] programme”.

Several people alleged corruption. A patient said she had contacted Coloplast, a company that supplies pouches, which told her that they had delivered pouches to CHBAH even though they had not been paid. “So where are they?” the patient asked.

However, the senior doctor we spoke to said that corruption was unlikely to be the cause in this instance, as colostomy pouches were not the type of medical products that normally “go walkies” from the hospital, in contrast to “transport ventilators, oxygen regulators”, items for which there’s a market in the private health sector.

In her view, the CHBAH management and procurement department were genuinely trying to improve purchasing systems, but “the stumbling block is in Commissioner Street [the head office of the GDoH]”. 

Patients and health workers still speak out 

Daily Maverick also spoke to Faizel Jacobs, the founder and coordinator of the South African Society of Stomates (Sass), which does pioneering work in providing education, support and expert informed advocacy to improve care for ostomates in the public health system. It recently published an Ostomates Survival Guide.

Jacobs, too, confirmed that there is once again a serious problem in Gauteng and that he had spoken to a patient who is suicidal. However, he said that with the exception of the Western Cape, there was a shortage of pouches in all provinces.

“The Eastern Cape is a shambles,” he said, citing allegations of some nurses selling colostomy pouches. “If you want more bags, buy me a pizza”, one patient was told.

In an interview I conducted with a doctor and a stoma nurse at a hospital in the Eastern Cape, these allegations were confirmed.

They told how while their hospitals used to get supplies from the central depot, without any notice this became a facility responsibility, leaving facilities “scrambling”, “battling” and faced with cumbersome and time-consuming purchasing procedures. In some instances, their hospital boards were approached for permission for more expensive pouches to be purchased from the private sector.

Both said that rural and district hospitals refer their patients to the few health facilities that supply pouches, adding to the patients’ already unaffordable transport costs. 

“Every day the Department of Health preaches that people should not have to walk far to health facilities,” yet the nurse described how some patients from rural villages like Lusikisiki first travel to Mthatha hospital, sleep on benches there, then the next day get a bus to a hospital in East London, collect their pouches, and then repeat the journey on return to their homes. 

“It takes them three to four days; they have to borrow money.” 

The nurse confirmed that the impact of not having pouches for her patients was “traumatic”, telling how she had seen patients “using plastic bags, patients whose skin is eroded, or using cloth or nappies tied around their waists”.

Because of the shortages, she lamented that a child patient couldn’t go to school to write exams and people are “even more neglected by their families because of the smell”.

“Our people are suffering,” she said, adding that sometimes the hospital (which both the doctor and the nurse said also suffers from medicine stockouts) doesn’t even have powder for the sores that develop around the stoma. Maverick Citizen has seen photographs of these sores. 

Inequality and indignity 

Is there a glimmer of hope? 

According to Jacobs, in Gauteng at least there are positive signs that hospitals “are trying” and that recently constructive meetings have been held at CHBAH and HJH.

However, while recognising the greater will in Gauteng to address shortages, he spoke of the systemic failures to recognise the needs of tens of thousands of stoma patients for professional care and support, which makes their suffering and stigma even worse.

For example, Jacobs said, the public health system has no reliable data on the number of ostomates, making planning and budgeting impossible. Numbers are based on product consumption, but consumption is based on the availability of pouches and not the need, and hence numbers are inaccurate and underestimated.

“Patients in the private sector can get up t0 60 pouches a month, but in the state sector as little as two a month.

“It is important to keep in mind that the number of pouches issued to a patient is dependent on many factors which include, but are not limited to, type of stoma, frequency of output, if the ostomate needs a one-piece or a two-piece pouching system and the peristomal skin condition, to name a few.” 

He decried the fact that there are no standard treatment protocols or care guidelines, meaning care is haphazard and inconsistent. Very few people in the public sector are trained in stoma care, and the whole framework of care is wrong. 

For example, Jacobs said, ostomates are often discharged from hospital not even knowing what type of stoma they have (colostomy, ileostomy or urostomy) and because of the shortages of pouching systems, they are not always shown how to apply their pouching system correctly. 

“Once home, pouches are reapplied incorrectly, which results in leaks, irritated and burnt skin, which results in ostomates suffering the indignity and humiliation of constantly smelling of excrement. Shortages also mean that nurses in the public sector are providing pouches to ostomates based on what is available and not what is needed and working on the assumption that the pouching systems are interchangeable. You cannot apply an ileostomy pouching system to a colostomy patient.” 

Health department responses 

The lack of a standardised approach to stoma care is borne out in an internal memo from the GDoH, dated 5 December 2022, responding to questions asked in the Gauteng legislature by DA MPL Jack Bloom. The memo reveals that different hospitals provide patients with different amounts of pouches per month, with CHBAH stating that “patients are issued with less quantities when contractors are not able to deliver the total ordered stock.

“Patients are educated on how to prolong usage so that what is issued can last for the period,” the memo says blandly.

In addition, several hospitals report having no dedicated stoma nurses.

stoma

The effect of state patients not receiving pouching systems. (Photo: Supplied)

However, in response to our questions, Motalatale Modiba, the spokesperson for the GDoH, told us that while there are more than 3,000 stoma patients in Gauteng (a figure we believe is an underestimate), with one-quarter attending CHBAH, the “majority of our facilities providing this service have adequate provisions”.

Modiba says only, “Dr George Mukhari Academic Hospital and Kalafong Provincial Tertiary Hospital reported running low on stoma pouches, which means that patients have to come back frequently for collection of pouches.” 

He denied there was a problem at CHBAH, while admitting that “due to non-payment of suppliers in April, patients were issued with five pouches instead of the regular 10. This meant that patients had to come back frequently for collection of pouches. As indicated, the problem has been resolved. They source suppliers from the Central Supplier Database.”

Asked about protocols for the supply of pouches and patient care, Modiba said: “The number of pouches issued is based on the complexity of the patient’s condition. Some patients require more pouches than others do. Less complicated cases require fewer bags inbetween follow-up visits.”

At a national level, Foster Mohale, the spokesperson for the National Department of Health said: “The department is not aware of the shortage of colostomy bags in public healthcare facilities around the country. The department has reached out to provinces to check if there is a shortage in order to intervene. Although there is no reported shortage of colostomy bags, the department always advises the authorities at facilities to check the stock levels of medicines and therapeutics to prevent shortage.”

Asked to comment on this response, SASS’s Jacobs said: “Why am I not surprised by their response? Patients tell a different story. 

“Furthermore, this response speaks to the fact that the three types of stomas are seen as one and the same thing. Each one is a different beast and as any ostomate living with an ileostomy will tell you, this type of stoma is probably the most angry of the three. Their pouching systems need to be emptied between six to eight times per day.” 

Last words: Appeals for sensitivity and respect for dignity 

In South Africa, the SA Human Rights Commission points out that everyone has a constitutional right to dignity and access to healthcare services. Yet it’s clear that this right is being violated for ostomates, and that the responsible government officials are insensitive and oblivious to people’s needs for care.

The patient I spoke to in Gauteng appealed for compassion and understanding.

“It’s inhumane how we are treated. I’ve lost my self-esteem because they haven’t given me enough to go on. They don’t care because they are not walking in our shoes. We just want someone to listen.”

Through her tears, she asked me to find out why the surgeons and nurses she encountered “had become robots? Why have they lost compassion and care? I would like to help them, because if we can’t assist them they can’t assist us. ” 

In the words of the Eastern Cape nurse, “The people at the top don’t know how important stoma bags are. They need greater awareness. Diseases like HIV and TB have awareness, but because this affects a small proportion of the population, [ostomates] are neglected.” 

People who are unsympathetic should understand, “It could be you tomorrow. It could be cancer, or a car accident or being stabbed… nobody knows about tomorrow.”

“We are not disabled, but this is debilitating us,” said Jacobs. “If you search the internet for standards of care for any of the cancers, TB, HIV, diabetes you will find a Department of Health-endorsed protocol of treatment or treatment plan. There is no such thing for our ostomy community. We are just not that ‘fashionable’.

“Not even in the days of apartheid did people suffer as badly as this,” said the stoma nurse who first contacted Daily Maverick to raise the alarm. On the basis of our investigation, it’s hard to disagree. DM 

For more information on ostomy or for support, contact The South African Society of Stomates (Sass), a non-profit organisation formed by Ostomates across southern Africa to facilitate a “holistic” approach to ostomy patient care by bridging the gap between the private and public sectors while advocating for the rights of fellow ostomates throughout the country: [email protected]

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