Stoma patients battling SA’s ostomy crisis demand access to dignified healthcare

Ostomates gathered at Helen Joseph Hospital for a workshop to commemorate World Ostomy Day. (Photo: Lerato Mutsila)

By Lerato Mutsila

19 Oct 2023

Living with a stoma is challenging at the best of times. It gets harder when patients have to fight tooth and nail for access to dignified care. Now, ostomates have gathered at Helen Joseph Hospital to demand a minimum standard of care – a right enshrined in the Constitution.

‘A pouching system and good ostomy care is the barrier between ostomates living active, dignified lives and living life as a disabled person. But ostomy care is in crisis, and we have created a new breed of disabled person.”

These were the words of Faizel Jacobs, an ostomate (a person living with a stoma) and the general manager of the South African Society of Stomates (Sass), during his organisation’s World Ostomy Day Workshop at Helen Joseph Hospital on Thursday, 11 October.

World Ostomy Day is usually celebrated on 2 October, but the hospital’s dining hall was filled with ostomates, healthcare workers and allies who gathered to discuss the lived experiences of ostomates and spark a conversation about setting a minimum standard of care for people with stomas.

A stoma is a temporary or permanent opening in the abdomen connected to the digestive or urinary system – a life-saving procedure that allows patients to pass urine or faeces into a prosthetic called a pouch or an ostomy bag.

When I was told that I could only get two bags for the month, it meant I had to limit what I ate so that my stomach would not work so much.

Jacobs said the workshop is the first patient-driven gathering to demand adequate and dignified ostomy care from the public sector.

The ostomate community and the society’s demands are: The inclusion of ostomates in the decision-making processes for the provision of medical products and services, for ostomates to be afforded a national minimum standard of care and for more nurses to be trained to offer that care.

The problem

Jacobs said the challenges faced by ostomates include a lack of access to products that make living with a stoma manageable.

While stoma patients with medical aid can afford halfway-decent healthcare in the private sector, the challenge often arises for those who depend on the public healthcare system.

stoma Non-ostomates at the World Ostomy Day Workshop wear pouching systems, stepping into the lived experience of ostomates. (Photo: Lerato)

Pouching system shortages, reported earlier this year, resulted in stoma patients not receiving enough bags to get through the month.

In a Daily Maverick investigation, the Gauteng health department said the issue had been resolved, but patients tell a different story.

The pouching system I used then is very different from the system I use now. But when you go to the hospital or clinic and tell them this is what I need, the response is, sorry for you, you’ll take what you get.

An ostomate at the workshop described how her life was altered when a public hospital reduced her supply of pouches. “When I was told that I could only get two bags for the month, it meant that I could not go to work,” she said. “It meant I had to limit what I ate so that my stomach would not work so much. On average, I empty [into the pouch] five times a day, so that is how many times I go to the loo. So, I used to limit what I ate. I started eating once a day. And I started getting depressed.

“To us as ostomates, [not having a pouch means] falling into depression. It means hiding away from society. It means basically not living life as you are used to,” the woman added.

The challenges, however, go beyond pouch shortages and include public hospitals only offering a specific type of ostomy bag, which frequently doesn’t suit patients’ individual needs.

Jacobs said the procurement departments at several public hospitals, which are responsible for sourcing patient products and medication, often approach ostomy care with a one-size-fits-all mentality. But the reality couldn’t be more different.

“I have had my stoma for seven years,” he said. “My body and my needs have changed since then. The pouching system I used then is very different from the system I use now. But when you go to the hospital or clinic and tell them this is what I need, the response is, sorry for you, you’ll take what you get.”

This is where the call for ostomates to be included in decision-making processes comes from. Jacobs insisted that because ostomates have the lived experience of dealing with their stomas, they know exactly what product best suits their needs.

The procurement department of Helen Joseph Hospital was invited to join the workshop, but was noticeably absent, which Jacobs said speaks to how they regard ostomy care.

This tied into the matter of a minimum standard of care. Jacobs said: “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.”

In 2022, when DA health spokesperson Jack Bloom asked the Gauteng health department about the standards of ostomy care, it was revealed that there were no standard guidelines across government hospitals in the province.

In light of this and the many other challenges, Jacobs believes ostomy care in South Africa has crumbled. In addition, more than 60,000 people are living with stomas in South Africa (though Jacobs estimates the number is much higher), but there are fewer than 100 nurses (mainly in the private sector) who are trained to offer appropriate and adequate care.

Sass’ Survival Guide (the only comprehensive educational tool available to teach stoma patients about the care they deserve) describes a specialised stoma nurse as an ostomate’s guide and teacher throughout their stoma journey. However, a survey by the society revealed a lack of access to this essential service.

When we don’t give [stoma patients] the care, the education, and we don’t provide them with the products, we turn them into cripples.

Of the people surveyed, 47% said a nurse had not examined their stomach and peristomal skin since they were discharged from the hospital.

Also, stoma patients are often released without any support or information on treating them.

The lack of consistent care from qualified nurses results in many patients experiencing a large range of complications, from skin problems and irritation to stoma leaks, bleeding, and retracted and prolapsed stomas. These affect quality of life and compound the challenges ostomates already face.

Stomal therapy nurse Sister Jane Hole said ostomates’ vulnerability to complications necessitates consistent and high-quality care, including access to nurses specifically trained in treating stomas.

Hole told workshop attendees that when a person without a stoma wants to relieve themselves, they simply go to the toilet, but for ostomates the reality is very different – they carry their toilets (ostomy bags) around on their abdomen.

“When we don’t give [stoma patients] the care, the education, and we don’t provide them with the products, we turn them into cripples,” Hope said.

This reality was revealed in the Sass survey too: “65% of respondents said they could not go to work. Do you know what the kicker about this is? They’re not disabled in a traditional sense, they are disabled because they don’t have a pouching system or they don’t have a working pouching system.”

About the importance of continual care, from pre to post-surgery, Hole said: “The diagnosis is devastating, number one. The surgery is mutilating, leaving stoma patients incontinent. They do not have control over how the stoma functions. What they do have, if you teach them, walk the journey with them, make sure they have the correct pouching system and follow up with them, is a different form of control. You’re empowering them to look after themselves and have the correct products for the stoma, and that could be why they go back into society.”

Ostomates at Helen Joseph Hospital for a workshop to mark World Ostomy Day. (Photo: Lerato Mutsila)

The way forward

Kholofelo Mphahlele, a paralegal at SECTION27, used the Patient Rights Charter, which explains how to use section 27 of the Constitution for how ostomates can demand the dignified minimum standard of care they are entitled to.

Section 27 1a says: “Everyone has the right to have access to healthcare services, including reproductive healthcare.” Mphahlele said this right does not exclude ostomy care, and everybody under this umbrella should be treated with dignity.

While the Patient Rights Charter is extensive, Mphahlele focused on three aspects of it: Participation in decision-making, access to healthcare and continuity of care.

She said ostomates across South Africa have the right to demand products that best suit their needs and make living with the stoma manageable. Access to healthcare should not be limited to medical facilities such as clinics and hospitals, and health workers should be doing home visits to ensure no single patient slips out of the system.

Regarding continuity of care, Mphahlele said care needs to go beyond the physical: “Patients need pre-surgery counselling, post-counselling and continuous care. I think, for the most part, we usually look at the medical aspect, but no one ever talks about the need for additional psychosocial services. There needs to be constant psychosocial support for patients, too.

“The responsibility of the Department of Health is protecting, promoting and fulfilling the rights of the people of South Africa to the progressive realisation of the right to access healthcare services,” she said, quoting the charter.

The point was that the type of care the ostomate community was calling for is a right enshrined in the Constitution, but ostomates need to become their own advocates.

“We need to keep talking and talking about the problem, because if it’s not in [their] face, it will be forgotten. The movement grows by talking, and talking, sometimes screaming!” Mphahlele said.

Read more in Daily Maverick: The ethical dilemma some surgeons in public healthcare face – save lives or prevent indignity and humiliation

Jacobs acknowledged the importance of ostomates advocating for adequate and dignified healthcare – the workshop was part of that advocacy – but stressed that the intimate nature of their challenges makes it hard for people living with stomas to speak out.

“One of our biggest problems, because of the personal nature, because of how vulnerable you need to become, there’s not many people who are confident enough to do it. There are not many people who are confident to leave home because they don’t have a pouching system,” he said. DM

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The problem

The way forward