When 55-year-old Alex Epedun from Bukedea District was diagnosed with prostate cancer last month at Uganda Cancer Institute (UCI), he was given medicine and advised to return for surgery in October.
But Epedun and his son Gilbert Okalebo decided to stay at the UCI premises in Kampala because they did not have the money to travel back home, some 250 kilometres away, and return after a couple of weeks.
The two are among hundreds of patients and caregivers who were sleeping on verandahs and in corridors of the UCI premises.
Last week, UCI ordered all patients and their caregivers, who had been camping on the verandahs and in corridors to move to the newly constructed care home about a kilometre from the UCI premises.
Unfortunately, it was already full when Epedun got to the care home. Patients and caregivers who didn’t get space in the care home decided to sleep outside, in an area which is partially fenced and adjacent to a slum.
Epedun and his son decided to return to the waiting area opposite UCI to stay as he waits for the surgery.
“My father doesn’t want to go home. He said he will stay here. We are talking to people in charge of the care home to find us space. We can’t rent in Kampala or travel back to Bukedea and then return; it is very expensive. Even Shs10,000 is hard to find right now,” Okalebo told said on a cold Saturday morning.
Another patient, Moses Oringe from Pakwach says he is also sleeping in the waiting area.
“I am here with my wife. I started getting treatment for neck cancer last year. I have been here for four months. My next treatment is on September 7. I sold my phone because feeding is also a problem,” he said.
However, Lembanyuta Owonda, a patient with throat cancer, says he got space in the care home.
“This place is better than sleeping outside. I am here alone. I have been here for four months,” Owonda says.
Another caregiver, Nixon Odongo from Kole District, says: “I got space at the care home. If you travel back home, won’t you miss the treatment? My patient has been vomiting since the night we came to the new care home. Now they have asked me to take her to the emergency ward.”
The care home has two tents and a dilapidated house and can only accommodate 100 patients, but about 200 need shelter.
UCI has a bed capacity of only 120 patients. The institute handles around 60,000 patients annually.
Dr Nixon Niyonzima, a doctor who heads research and training at UCI, says they have limited funds to accommodate patients.
“These are cancer patients but in this case, it is social problem, not a medical problem. Ordinarily, they would be home but then we require them to come from Gulu every after two weeks to get care [which some may not afford],” he says.
The acting director of the Uganda Cancer Society, Mr Dennis Olodi, says they are engaging the UCI management on how to assist the stranded patients.
He says they were not involved when the decision to evict the patients from the UCI premises was made.
Mr Olodi says palliative care for the patients is not funded by the government.
“So, the civil society has been bridging the gap. I think this was a knee-jerk reaction after the media report but we shall meet the management to get the clear information,” he said.
However, non-governmental organisations (NGOs) that are providing accommodation for cancer patients, such as Kawempe Home Care, say they don’t have sufficient funds to accommodate everyone in need.
Dr Jackson Orem, the head of UCI, says the lack of accommodation for patients is not unique to Uganda.
“It is all over the world. Where there is a big cancer centre, you should have a big care home to accommodate patients,” he notes.
Dr Emmanuel Luyirika, the executive director of the African Palliative Care Association, says more than 400,000 patients in Uganda, beyond the confines of cancer, need palliative care which includes accommodation.
Dr Charles Ayume, the head of the parliamentary Committee on Health, says the establishment of regional cancer centres is being expedited to minimise such problems.
“It’s true that the UCI is overloaded with too many patients and this has outrun the space and the human resource. The government’s strategic direction is to decentralise cancer services to regional cancer centres in Mbale, Mbarara, Gulu and West Nile,” he says.
This is intended to address some of the accessibility and equity issues that patients who come from far are facing.
“The government will continue to support doctors willing to specialise in oncology,” Dr Ayume notes.
Dr Niyonzima says they plan to decongest UCI by strengthening and establishing regional treatment centres.
He said this year, they plan to start treating cancer patients in facilities being constructed in Mbale and Gulu.
“The first regional cancer centre to get the machines will be Gulu. It is the first custom cancer centre that was built. In the other facilities, we have been operating in buildings that were given by the regional referral hospitals [of Arua and Mbarara],” he says.
He adds: “But every regional cancer centre will have a radiotherapy machine but we will have to build the infrastructure. We have six bankers at UCI and the new radiotherapy machines are coming to equip the bankers.”
Ms Margaret Muhanga, the State minister for Primary Health Care, said the government is aware of the issues raised and is working to address them.
“Palliative care is very important in our lives. We know how important it is to be cared for,” she says.