Ostomy care: the orphan child of the South African healthcare system

by Faizel Jacobs and Kholofelo Mphahlele

I recall meeting a woman who said to me: “I wish I met you six months ago. Back then, the surgeon told my husband that this surgery will change your life. He was not kidding. For six months my husband tried to commit suicide; last week I buried him.”

Section 27(1)(a) of the South African Constitution states that everyone has the right to have access to healthcare services, including reproductive health care. Section 27(2) mandates that the state must take reasonable legislative and other measures, within its available resources, to achieve the progressive realisation of each of these rights.

However, this is not the lived experience of many ostomates.

The South African Society of Ostomates (SASS) is 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.

SASS highlights the egregious lack of support for the ostomy community within the public healthcare system. Ostomates continue to face insurmountable challenges due to the scarcity of qualified stoma nurses, the unavailability of essential ostomy products, incorrectly prescribed pouching systems as a result of the lack of qualified healthcare workers, and the interference of procurement into scripting of these medical appliances. This often has negative physical and mental health consequences.

An ostomate is a person who has undergone ostomy surgery, a procedure that creates an opening in the body to divert the flow of waste or urine from the digestive or urinary system. This opening, called a stoma, allows bodily waste to be collected in an external pouching system rather than passing through the natural route. Ostomy surgery is typically performed when a portion of the digestive or urinary tract needs to be bypassed or removed due to disease, injury, or other medical conditions such as cancer, inflammatory bowel disease, or trauma. Ostomates may have different types of ostomies, including colostomies (where the colon is brought to the surface of the abdomen), ileostomies (where the small intestine is brought to the surface), or urostomies (where the urinary tract is diverted to the surface). Living with an ostomy can present various challenges, and ostomates often require specialised care, support, and access to specific products to manage their condition effectively and maintain their quality of life.

It is also important to note that an ostomate’s pouching system is prescribed to their individual needs and therefore, there is no such thing as a universal pouch. Much like a pair of spectacles, a pouching system is prescribed based on the patient’s unique circumstances and factors such as stoma type, disease, age, and body profile, to name but a few. These factors need to be taken into consideration when prescribing a pouching solution that will offer the ostomate the dignity, care, and security to live a full and productive life in society.

The shortage of qualified stoma nurses represents a critical gap in our healthcare infrastructure. These specialised professionals play a vital role in providing personalised care, education, and support to ostomates. However, the severe scarcity leaves many ostomates without the necessary guidance and assistance, exacerbating feelings of isolation and vulnerability.

The lack of access to essential ostomy products compounds the challenges faced by the ostomy community. A properly fitted pouching system is indispensable for maintaining hygiene, preventing complications, and enabling ostomates to lead normal, productive, and active lives in society. The chronic shortage of these products leaves ostomates without the necessary basics to manage their condition effectively, rendering them disabled and unable to perform simple day-to-day functions.

The neglect extends beyond the individual to impact the broader economy and strain the national budget. The investment made in performing stoma surgeries tantamount to wasteful expenditure when ostomates are denied access to essential products post-surgery, forcing them onto disability grants and placing an additional burden on our already fragile financial resources.

At an Ostomy Awareness workshop held at Livingstone Hospital in the Eastern Cape on April 11, this was a poignant reminder of the dire situation facing ostomates in South Africa. Ostomate Ricardo Arnold aptly summed up the sentiments of many when he stated: “The healthcare system in South Africa is not geared to support the ostomate. We are abandoned!”

Under the current circumstances, the public healthcare facilities struggle to support the ostomy community.

Can the National Health Insurance (NHI) provide adequate attention to the plight of ostomates and provide funding to the needs of well over 250 000 ostomates in South Africa?

The Health Department’s abandonment of ostomates, particularly in the public sector, represents a violation of the patients’ rights charter and undermines the principle of continuity of care. Ostomates are left to fend for themselves, unable to access the products and support necessary to lead fulfilling lives, including the ability to work and contribute to society.

On Wednesday, May 15, the day the NHI Bill was enacted, an article was posted in “The Citizen” speaking of how stoma bag shortages are gripping hospitals in KwaZulu-Natal.

The reality on the ground is that for NHI to be a lived reality for ostomates, there needs to be enough supplies of ostomy appliances in the country. Public hospitals and clinics need to order the right product and not limit quantity as this is crippling the ostomate community, both physically and emotionally.

The plight of the ostomate must be fought relentlessly and urgently so ostomates can stop being humiliated, ostracised from family and community, debilitated by the inability to move, and even worse, driven to suicide.

World Ostomy Month celebrated in October globally: a great time to start improving the level of care

High-quality and respectful health care and education are crucial to prevent further debilitating conditions for ostomates. With World Ostomy Month celebrated globally in October, it is a perfect time to emphasise that more must be done. Educational programmes for nursing professionals and the establishment of reliable succession plans are necessary to provide the South African ostomy community with adequate specialised nurses.

The rights envisioned and set out in the Constitution of South Africa provide for all people and includes the continuity of such care. With this constitutional guidance, ostomates should have access to the most suitable ostomy product to meet their specific and individual needs. It is time that the vision and rights enshrined become a reality, so that all ostomates can have access to inclusive specialised stoma care, support, education, and guidance in the public healthcare system without limitations.

We urge the Department of Health to contact the SASS to collaborate on improving the level of care for ostomates. Your attention to this urgent matter is greatly appreciated. We look forward to your positive response and collaboration.

* Faizel Jacobs is the Founder & General Manager of The South African Society of Ostomates (SASS).

* Kholofelo Mphahlele is the Paralegal at Section 27.

** The views expressed here are not necessarily those of Independent Media.

Cape Argus

Do you have something on your mind; or want to comment on the big stories of the day? We would love to hear from you. Please send your letters to arglet@inl.co.za.

All letters to be considered for publication, must contain full names, addresses and contact details (not for publication)