Ghosted by the Eastern Cape Health Department — how bureaucratic silence is destroying stoma patient dignity

In July 2023, Daily Maverick journalist Mark Heywood exposed the national crisis facing stoma patients – people across South Africa forced to use plastic bags and masking tape because hospitals had failed to supply them.

Two years later, that story has not changed, except for one thing: civil society is stepping up.

When doors closed, dignity demanded entry

When Asanda contacted the South African Society of Stomates (SASS), describing how she was using a plastic bag – the same type used for fruit and vegetables – sealed with electrical tape to fashion a stoma pouch, we reached out, via the Cancer Alliance, to Dr Rolene Wagner, the Eastern Cape health head. She immediately convened a meeting with her team to address this crisis and other concerns raised by partner civil society organisations.

Following that engagement, SASS presented a practical, no-cost proposal to support the Eastern Cape Health Department sustainably. The proposal included:

• 250kg of ostomy supplies for immediate deployment;
• Free nurse training to correctly script and manage ostomy patients;
• Ongoing mentorship by a qualified stoma nurse specialist; and
• Free access to the SASSLink App to better track patients and forecast product needs.

Weeks later, neither Wagner nor her team have responded to calls, texts or emails.

The cruel irony of collaboration

Nonprofits like SASS attend meetings, serve on task teams and deliver detailed proposals – only to be met with silence. Many ostomy patients still receive incorrectly prescribed pouches, resulting in leakage within hours. And when only five pouches a month are issued, what are patients supposed to do?

Asanda’s story is one of desperation – not ingenuity.

The cost of failure – in rands and in dignity

Every incorrect prescription and wasted box represents avoidable waste. Millions of rands are lost, yet the human cost is greater. Ostomy patients are stripped of dignity daily. Many stop eating to reduce stoma output, landing in hospital dehydrated and malnourished – preventable admissions costing more than the correct pouch ever would.

And when they seek medical help, patients face empty pharmacies, chemotherapy drug shortages and overcrowded wards with too few nurses.

Poverty by policy

SASS data shows 70% of ostomates are unemployed and 80% are between the ages of 25 and 55. People who should be contributing to families and communities are instead trapped in dependency – a direct consequence of system failure.

Where the system leaks – and patients bleed

Poorly fitted pouches cause leaks, infections and peristomal wounds – chronic, painful and preventable. These conditions limit mobility, destroy confidence and confine people to their homes. They may be invisible in budgets, but they are written on the bodies of the forgotten.

Accountability starts at the top

SASS is offering solutions, compassion and expertise at no cost. All we ask is communication, collaboration and respect.

The Batho Pele (“People First”) Principles promise transparency and courtesy in public service. But until they are lived – until officials are held accountable – dignity will remain a privilege, not a right.

If government officials were required to use the same hospitals as citizens, maybe “People First” would finally mean something again.

Until then, it’s not Batho Pele. It’s Batho Last. DM

Faizel Jacobs is founder and general manager of the South African Society of Stomates, championing dignity and care for ostomy patients. He drives initiatives to improve access to supplies, train nurses and implement digital solutions that strengthen South Africa’s public health system. He serves on the executive committee of the Cancer Alliance and has been appointed to serve on the Ministerial Advisory Committee for Cancer Prevention and Control as a patient representative.