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Lack of supplies and care for desperate SA stoma patients

The ongoing shortage of colostomy pouches in the public health system, where some desperate patients resort to plastic bags glued and taped to their abdomens, calls for crisis intervention.

Living with a stoma, a small opening in the abdomen which is used to remove body waste like faeces and urine into a collection bag (a colostomy, urostomy or ileostomy pouch) is difficult at the best of times, writes Mark Heywood in the Daily Maverick.

The operation leading to 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 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, say patients and doctors, the situation has not improved.

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

Photographs that were taken in March showed a patient with plastic bags glued and taped on to his abdomen; another was fitted with a urostomy pouch, when what is needed was a colostomy pouch (the former is for urine, the latter for poo).

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

One woman described how after having a colostomy at CHBAH, she was discharged within days without being educated on how to care for herself. “I had to do it on my own… it’s so hard,” she said.

She was given just one colostomy pouch for a month: “Imagine being given just one piece of toilet paper for a month.”

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

“They said 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.”

Daily Maverick was told by several people that after the recent increase in complaints about pouch shortages in Johannesburg, a meeting was held on 21 June at Helen Joseph Hospital (HJH) on the crisis.

Afterwards, 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 Babita Deokaran”.

He was told corruption in the GDoH is “much bigger than you think; it goes from bottom to top and through the top”.

A senior doctor at CHBAH said 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, who said 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 it had delivered pouches to CHBAH even though it had not been paid. “So where are they?” the patient asked.

However, the senior doctor we spoke to said 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 and 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, 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.

Jacobs, too, confirmed a serious problem in Gauteng and he had spoken to a patient who was suicidal. However, he said that apart from 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.

A doctor and a stoma nurse at a hospital in the Eastern Cape confirmed the allegations.

They said 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 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 health department 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 said the impact of not having pouches was “traumatic”, that she had seen patients “using plastic bags… 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”.

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.

Is there a glimmer of hope?

Jacobs said in Gauteng, at least, there are positive signs hospitals “are trying” and that 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.

He 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 few 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, for instance.”

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 these correctly.

“Once home, pouches are reapplied incorrectly, resulting in leaks, irritated and burnt skin, so they suffering the indignity and humiliation of constantly smelling of excrement. Shortages also mean nurses 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. But 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 numbers of pouches per month, with CHBAH saying “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.

Motalatale Modiba, spokesperson for the GDoH, told Maverick there are more than 3 000 stoma patients in Gauteng (we believe it’s an underestimate), with one-quarter attending CHBAH, and the “majority of our facilities providing this service have adequate provisions”.

Dr George Mukhari Academic Hospital and Kalafong Provincial Tertiary Hospital reported running low on stoma pouches, meaning patients have to come back frequently for collection of pouches.”

He denied there was a problem at CHBAH, but admitted that “due to non-payment of suppliers in April, patients got five pouches instead of ten. This meant they had to come back frequently to collect more. 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. Less complicated cases require fewer bags in between follow-up visits.”

At a national level, Foster Mohale, spokesperson for the National Department of Health said: “The department is not aware of the shortage of colostomy bags in public healthcare facilities. The department has reached out to provinces to check if there is a shortage… The department advises authorities at facilities to check the stock levels of medicines and therapeutics to prevent shortage.”

 

Daily Maverick article – Stoma patients suffer indignity and pain due to maladministration, corruption and health department uninterest (Open access)

 

See more from MedicalBrief archives:

 

Colostomy bag stock still erratic at Gauteng hospitals

 

Colostomy bag shortage at Gauteng hospital ‘violates human rights’

 

Stop Stockouts introduces online report facility for whistleblowers

 

 

 

 

 

 

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