TB patients have 'family ties'
2012-04-07 15:02
Cape Town - The pain of death from tuberculosis affects dedicated caregivers as if the patients are family members, particularly in vulnerable communities.
"It's very heart sore to me when I work with them and I know that in a week or a month, I won't be with them anymore," community TB case worker Betty Jansen told News24.
She is a community DOT [Directly Observed Therapy] worker in a shack-dwelling settlement in Strandfontein, about 30km outside Cape Town.
The area has a high rate of TB and HIV cases, complicated by low compliance and a lack of interest by officials from the department of health and social development.
Jansen is an unpaid worker who is emotionally affected by the deaths of those in her care.
Family life
"I spend more time with them when I see that they're about to die," she said.
Family life for patients in the community is lacking because most are from the rural areas and caregivers become extended family.
"The majority of us are foreigners [from the rural areas]. Many us of don't have family here and that's why we are so close with each other," said Jansen.
On a News24 tour of the area, clear evidence of poverty was visible, including health threats like open toilets close to communal water taps.
Jansen pointed out shacks that are marked to be razed once patients with TB have died. She has to ensure that patients have a meal and that they take their medication.
"There are many of them [TB patients] that I really have to look after and stand behind to make sure they take their medication."
She said that there is no visible help from the department of social development officials and Jansen has to ensure that patients are transported to hospital when required.
Stress
"The only help we get is the clinic. When the clinic refers a patient, I must see that that person and myself have taxi fare and if someone dies, I must ask the community: There's no coffin, there's no family, there's nothing. So I must run around to get that person buried."
Her stress is exacerbated by patients who consume alcohol and refuse to comply with their medical programme. The TB treatment takes about six months, but if a patient is negligent with the medication, the disease can progress to more dangerous forms.
"And when the patient at the day hospital that he has HIV, he drinks a lot. Even it's a person who drinks a bit; on that day he drinks extra. He has this idea in his head 'I'm going to die' so he does whatever he wants.
"I'm sitting with this problem that the day hospital and clinic staff only come out to do the tests when they feel like it and what happens is the person who needs it, doesn't get it, because he hides away. What I do is get them out of their homes and send them for the tests," Jansen said.
She has appealed to government departments for help, but said that they have not helped in material ways, despite promises to do so.
"The health department never comes out here to help people. Even when I've called them, they say 'We're coming', but they never do."
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