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A patient’s plea to the Health Department: Just talk to us about ostomy care

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Faizel Jacobs is the founder and coordinator of the South African Society of Stomates.

I felt almost embarrassed when asked how we are working with our Health Department, to which I could only respond: We are either ignored or avoided. I have tried without success over the past three and a half years to speak to members of the department.

Last week, sitting at OR Tambo Airport waiting for my flight home, I reflected on the past week spent in Uganda and felt disappointed, sad, frustrated and probably a little angry. 

Some context. 

On invitation from the European Ostomy Association, I met up with ostomy associations from Iceland, Zambia and Zimbabwe to support the newly formed Uganda Ostomy Association. Over the week we held workshops with both ostomates and medical personnel who on some level are exposed to supporting patients who have a stoma. Apart from the surgeon’s knowledge about stomas, not much else is known within the caregiving sector. This is why the Uganda Ostomy Association was formed. 

At the workshops held in Kampala and Mbarara, we discussed the basics of what a stoma is, the basics of stoma care and what products are available to support ostomates.

What stood out most for me was not just the participants’ eagerness to learn, but that, unannounced, we were able to meet executive members of the health ministry. State health minister Anifa Kawooya Bangirana welcomed us to her office and after a lengthy consultation, advised several courses of action, including a visit to the Mulago National Referral Hospital to meet the deputy executive director, Dr John Sekabira.

At the Mbarara Regional Referral Hospital, the hospital director and surgical residents took us on a short tour, outlining their challenges, particularly ostomy care after surgery.

In South Africa there is the culture of trying to hide the shortcomings instead of trying to learn from them and grow.

On all three visits we arrived unannounced but we were welcomed and had long, productive discussions, paving a way for the health ministry and the Uganda Ostomy Association to work together to improve standards of care.

Speaking to the delegations from Zimbabwe and Zambia, they all have similar relationships with their own health departments. 

Read more in Daily Maverick: Stoma patients suffer indignity and pain due to maladministration, corruption and health department uninterest 

I felt almost embarrassed when asked how we are working with our Health Department, to which I could only respond: We are either ignored or avoided. I have tried over the past three and a half years to speak to members of the department, to no avail. In fact, we had one phone conversation, after which we were completely ignored – ghosted, so to speak.

Over the past year our only engagement with the department has been through the media, and that has been more them responding to concerns raised, not accepting the offer of constructive dialogue. 

What is extremely telling is that Uganda, Zambia and Zimbabwe do not have the range of ostomy supplies that we have in South Africa. Their challenges are so much worse than ours. But, while we have ostomy care products, they are not being ordered at the various state hospitals. 

Yet these countries are willing to work with their ostomy associations to try to improve the level of care for ostomates. 

In South Africa we are ignored, or inaccurate, untrue public responses are issued to the media.

Read in the Daily Maverick: Stoma patients in SA ostomy crisis demand dignified care 

In these countries, when shortcomings are highlighted, they work through them collectively and find an appropriate solution within the confines of their restrictions. Sadly, in South Africa, based on my own experiences, there is the culture of trying to hide the shortcomings instead of trying to learn from them and grow. 

At this point, I do not know what it would take to get an audience with the decision-makers at the Health Department. We need to speak to someone who is able to influence the change that is needed, someone who is willing to be vulnerable enough to accept that there are shortcomings in ostomy care and engage with all stakeholders to improve it.

I don’t know where to find this person. But if someone from the Health Department is willing to engage on the matter of ostomy care, please do; the more than 250,000 ostomates in South Africa are begging you to. We need to drive change in a positive manner. Ostomate rights are human rights and as such we have a right to have our dignity maintained. DM

Faizel Jacobs is a father, husband, cancer survivor and an ostomate. Before being diagnosed with colorectal cancer in 2016, he thrived in the corporate space as customer service/team manager for more than 20 years. After being diagnosed he was left with a permanent colostomy or stoma. A stoma is formed via a surgical procedure that creates an opening in the body for the discharge of bodily waste.

Jacobs says: “My experience has shown me that there was a serious lack of education on living with the stoma/ostomy which was impacting on the physical and mental well-being of ostomy patients across the country.” 

He started using his own experiences to raise awareness about the challenges and to promote greater understanding and support for this community. In June 2020, along with other ostomates, he formed the nonprofit South African Society of Ostomates, which provides information, education and support to people who have had ostomy surgery and engages in activism and advocacy to ensure the rights to access healthcare services for ostomates are met with dignity and care.

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