DIABETES | ‘My father was never taught how to use insulin safely’

By Tholakele Mbonani, Health-e News

Managing a chronic condition like diabetes requires clear guidance, but a lack of adequate patient education in local clinics is turning routine daily treatments into dangerous hazards. More than four million South Africans are living with diabetes – a condition characterised by high levels of sugar in the blood. It can be treated with drugs and managed through healthy eating and exercise. But if it’s not managed well, it can be life-threatening. 

Diabetes is now the leading cause of natural death in South Africa, but patients do not always receive sufficient hands-on training or practical instructions on how to use their medication safely – or what to do in an emergency. As community journalist Tholakele Mbonani discovered, the consequences can be frightening for patients and their families.

For many people living with diabetes, insulin is a lifeline. But for my father, Sipho Mhlanga, a 63-year-old resident of Duduza on Gauteng’s East Rand, managing his insulin is the most frightening part of living with the disease. He has never been given training or ongoing education on how to administer his medication correctly. 

“When we go to the clinic, they give us medication and tell us how much to inject and how many times a day. But nobody really sits down with us to teach us how to inject ourselves properly. They just give us the medication and expect us to know what to do,” he says.

After a seizure that led to hospitalisation in 2023, a doctor asked how he measured and administered his insulin. My father explained that whenever he had a seizure or felt dizzy, he would inject himself with insulin. The doctor explained that he was overdosing on insulin and advised him to stick to his prescribed schedule of injecting in the mornings and at night.

“I thought I was doing the right thing because I was taking my insulin the way I understood I was supposed to. It was only when I ended up in hospital that I realised I did not understand everything about the dosage and how dangerous it could be.”

My father believed he was helping himself when he felt unwell, but he did not understand the risks of taking additional insulin. Like many other diabetes patients we know, he felt inadequately equipped to manage his condition safely once he left the clinic.

Living with a lifelong condition

He was diagnosed with Type 2 diabetes in 2020, and life has not been the same since. What started as a condition requiring medication and lifestyle changes has become a daily struggle, not only for him but for our entire family. 

There are things we often take for granted, like taking a bath, walking around the house or going about our day without worrying about what could go wrong. For my father, these are no longer things he can do without caution.

Last year, he had a seizure while bathing. Since then, he has stopped using the bathtub and washes himself using a basin. It might seem like a small adjustment, but it shows how much independence he has lost.

He injects insulin twice a day, in the morning and at night. His blood sugar levels sometimes rise too high or drop dangerously low. We have watched him experience seizures, become disoriented and struggle to communicate. At times, his body stiffens, leaving him seemingly unaware of what is happening around him.

My dad used to get seizures a few times a year. Lately he has had one almost once a month. When he has a seizure, I call an ambulance and he is taken to the hospital, where they monitor him for 24 hours. Sometimes they monitor him for longer. After that he is discharged and sent home. We are never advised what to do when seizures occur or how to recognise the warning signs. We are also never advised what to do while waiting for the ambulance. 

My father also lives with hypertension. His seizures started before doctors discovered a brain tumour in March this year, but the cause of the seizures has not yet been established.

Watching someone you love go through that is frightening. You never know how serious the next episode will be.

What should happen at the clinic?

His experience raised a question for us: how many patients are expected to manage insulin at home without fully understanding the risks?

Pamela Jwili, a registered nurse working at a nurse-led diabetes education and wellness practice in Boksburg, says patients need practical training, not simply instructions about how many units of insulin to inject.

“Prescribing insulin is only one part of treatment. Preparing the person to use it safely at home is equally important,” she says.

Jwili says healthcare workers should demonstrate the injection process and ask patients to show it back to them – a technique called the Teach-Back Method. Mistakes should not automatically be blamed on patients, she adds, because unclear instructions and inadequate follow-up can contribute to errors.

Community lifelines

When my father has a seizure, there are moments when I genuinely do not know what to do. During these frightening episodes, I turn to his friends and our neighbours, particularly Refiloe Mabuza, his longtime friend and our neighbour, who has become an important part of our support system.

During one such incident in 2023, Refiloe helped me position him safely while we called an ambulance. She also shared what she knew about his medication and daily routine, things I was still learning to understand. His other friends, some of whom also live with diabetes, often step in to help too.

However, despite being someone we rely on during emergencies, Refiloe admits that she, too, has never formally learnt how to administer medication or respond to diabetes-related emergencies.

“I never received any formal training on how to administer diabetes medication. Everything I know, I learned from my mother, who later died from diabetes. Even at the clinic, nobody showed me how to administer the medication properly. They only told me how often it should be taken and what foods we should eat. But the recommended diet is expensive, and we cannot always afford it,” she says.

“When Sipho gets sick, I just do what I think is right because nobody ever taught me how to handle these emergencies.”

Lifesaving care at home

I live with my father and am his primary caregiver, but he often attends clinic appointments alone because I am at work. I am not there when his treatment is explained. He goes monthly, but sometimes they give him enough medication to last at least two months.

When he comes home, I depend on what he tells me. I know when something is wrong, but recognising an emergency and knowing how to respond are two different things.

Jwili says caregivers need emergency training. She says a person having a seizure or unable to swallow safely needs immediate medical help and food or drinks must not be given by mouth.

My father tests his blood sugar twice a day using a glucometer. He had to pay R250 for a replacement machine after being told his previous one was outdated. He also spends R200 a month on testing strips, which last him about 25 days. When he recently asked the clinic for another replacement machine, he was told there was no stock.

Dr Patrick Ngassa Piotie, Chairperson of Diabetes Alliance and Extraordinary Lecturer at the School of Health Systems and Public Health at the University of Pretoria, says overcrowded clinics, limited counselling time and shortages of monitoring supplies leave people managing insulin without enough support.

“Managing diabetes without access to a glucose meter and test strips is like driving a car without being able to see the speedometer,” he says.

He points to lessons from the Tshwane Insulin Project, which paired clinic care with home visits by Community Health Workers (CHWs) and telehealth support for clinicians. Trained CHWs can reinforce education, identify problems and communicate glucose readings to healthcare professionals. Piotie stresses that Insulin adjustments must remain under clinical supervision and an appropriate protocol.

It makes me wonder how different things could be if families received help before the next emergency, rather than learning through fear.

When people talk about diabetes, the conversation often centres on food, medication and blood sugar levels. What we do not always talk about is what happens behind closed doors: the daughter calling a neighbour because she does not know how to help her father. The friends who step in because they understand the condition. The constant fear that another seizure could happen when nobody is around.

For my father, diabetes has changed his life far beyond two injections a day. For us, it has meant learning to live with uncertainty.

As Jwili puts it, “People living with diabetes should not be sent home with insulin and left to work out the rest alone.”

I could not agree more. Families need knowledge and support too, so that when the next emergency comes, we are not left relying on guesswork.

Sipho Mhlanga was admitted to Pholosong Regional Hospital after suffering another seizure at his home in Duduza on Tuesday, 3 November. He was still receiving treatment at the time of publication.

Source: Read the original report at Health-e News.