Patients at the Uganda Cancer Institute. Photo | File
Hamidah (not her real name) was last year diagnosed with stage four cancer at Uganda Cancer Institute (UCI), an advanced stage where the cancer cells have spread to an organ or a part of the body away from the original tumour.
She says despite the urgent need for treatment due to her condition, it took her two months of waiting to be started on radiotherapy, a treatment involving the use of high-energy radiation that kills cancer cells, at UCI.
The efficiency radiotherapy and how it is used varies between different cancers and how patients respond to treatment.
Some patients defeat cancer, in combination with surgery or chemotherapy. This treatment, however, only kills cancer cells in a specific area of the body or organ.
“The senior doctor referred me to radiotherapy clinic after I successfully completed chemotherapy (treatment with cancer drugs) at UCI,” she narrates her story in one of the several interviews Daily Monitor conducted with some of the stranded cancer patients at UCI.
Hamidah is not alone, there are many stranded cancer patients, surviving on what livid caretakers called “hope for a better tomorrow”.
“I went there [radiation therapy unit] and they told me to come back after three weeks. I went back to home, up country. I came back and the first thing I did was to see a senior doctor for radiotherapy and from then, I was told to go and do a treatment plan [for radiotherapy],” she adds.
The business woman, who comes from a district which is more than 400 kilometres away from the Kampala-based treatment centre, says she was again told to come back after three weeks.
She notes that she was bounced many times even after explaining the pain and other complications she had endured for months.
“I went back home. When I came back after three weeks, I thought I was going to start radiotherapy immediately. But reaching there, they told me, ‘your plan is not yet ready’, they told me to come back the following week on Monday,” she recalls as she struggles to hold back tears her caretaker attributes to emotional stress.
“Now that is when I started to stay at a UCI care home because the cost of travelling home and back along with my caretaker was high –Shs120,000 excluding related spending. I stayed here in the care home for two months without starting radiotherapy,” she reveals.
This delay got her doctor at the initial clinic where she got chemotherapy, concerned.
People flock to Uganda Cancer Institute for mass cancer screening on November 11, 2024. Photo/ Tonny Abet
We can't divulge the name of the clinic or that of the patient to prevent victimisation after sharing her experience.
“Even my senior doctor at the clinic became annoyed. The doctor said if they delay me, the disease may come back. And if they start giving you radiation when the disease is already there, it is not going to help,” she says.
Overwhelming numbers, machines breakdown
Hamidah says she later learnt from insiders at UCI that the delays were a tactic used by the personnel to handle the overwhelming numbers.
She describes the personnel at the unit as committed people who start working as early as 5am at dawn and close late at night, sometimes at 10pm.
“People are many in the radiation clinic. We only have three machines in the radiotherapy unit but there are thousands of patients lining up every single day. Now those doctors wait until they discharge others so that they fix others because patients are many. I came to realise that those people are delaying me because patients are many,” she notes.
Despite the struggles, Hamidah says she eventually completed the more than 10 rounds of radiotherapy and has been discharged. She says the doctor told her the cancer has been confined/controlled.
“I thank God that I didn’t miss any day –I was given all the rounds and I did all of them. The machine didn’t break down. Sometimes two machines will be down, only one machine will be working,” she notes.
“I'm fine but only that there are some side effects of the medicines, but with time they will go. So, I now call myself a cancer survivor because I have already reached more than one year,” she says with excitement.
Hamidah also reveals that although the government provides the most expensive medicines, she has to buy some which are not at the UCI, costing more than Shs400,000 for specified periods.
Dr Charles Ayume, the former chairperson of parliamentary Health Committee, says: "UCI can't keep up with the number of cancer cases.”
“Immediate and mid-term solution is required to regionalise oncology services in the four regions. Gulu is complete and awaits operationalisation this year. The cancer registry should go beyond Kampala to the national level for better planning,” Dr Ayume explains.
Ms Cissy Bangidde, a principal radiation therapist at UCI, recently revealed in an interview that they have normalised overtime work of around five hours which the management doesn’t compensate for.
Mr Bangidde, one of the medical scientists responsible for planning and delivering life-saving doses of radiation to treat cancer patients, says she and the other staff work overtime because of the large number of patients in urgent need of care.
According to information from the UCI Radiation Department, daily, at the radiotherapy machines, 242 patients are handled.
“That is only for treatment. For the CT scan, we are scanning 15 to 17 patients daily, Monday to Friday,” Ms Bangidde reveals, adding, “And then we also have brachytherapy treatments where we carry out treatments for cancer of the cervix patients from 10 to 12 patients per day.”
“So, on the whole, that's around 260 patients that we are handling daily [at the department]. The department handles 2,000 new cancer cases per year, not counting the re-treatments that come along the way,” she adds.
But UCI says around 7,000 new cancer patients are discovered each year through diagnosis. Around 34,000 Ugandans are estimated to develop cancer each year.
Health experts observe that numbers are projected to rise due to population increase and other factors such poor eating habits and high prevalence of infections like HIV and Human Papilloma Virus which are associated with cancer causation or risk.
Worsening situation
The concern around delays in accessing care at UCI has increased in recent years.
Following the mass cancer screening a few months ago, our reporter observed that patients were waiting even longer hours to access their medicines.
In the outpatient unit, where the majority get care, is often packed to capacity, with some patients, who are scheduled for treatment waiting from outside to also get a chance to receive the life-saving medicines [chemotherapy] administered intravenously (IV) at the unit for hours.
The medicines drip slowly into the blood, with some patients spending six or more hours at the unit undergoing non-stop treatment, usually with one or two (few) health workers, who look exhausted by the workload, running from one patient to another to handle the cancer patients.
The majority of the patients (most of them are weak) have to endure sitting for hours during the IV treatment while others who are deemed too sick are allowed to rest on about six old beds at the unit as they get the treatment.
Some of the people who turned out for free cancer screening at the Uganda Cancer Institute on November 11, 2024. Photo/Stephen Otage
The general ward for admitted patients is also usually packed to capacity, with many patients sleeping on the floor and even at the reception area due to limited space.
This exposes them to infection risks and overwhelms the limited sanitary facilities which males and females share. Some of the toilets have also broken down amid poor hygiene situation in the important area.
Bedbugs infest care home
The UCI management and well-wishers, following previous media reports that patients were sleeping on the hospital veranda, decided to chase non-admitted patients away from their main premises where the ward is located.
But the institute, that is mandated to oversee cancer care, also worked out a modality to help those who can't commute in the course of the treatment which can go on for months or years; they established a care home for this group, located about a half a kilometre away from the wards.
Initially, the care home had two temporary tents and one permanent structure but the tents have now increased to at least four.
However, the tents and the permanent house are always packed to capacity, with some sleeping on double-decker beds and some on the floor.
The space meant for 30 people often accommodate around 50.
Inside the care home, hygiene issues and bedbugs (in the permanent house) are some of the challenges.
Many patients are too sick and they have to ease themselves in buckets, this often includes vomiting --causing a build up of a stench which everyone endures --partly because that is the best the government can offer and they don't have other options.
“We have bed bugs in the main house, that is why I refused to go there, that house is old,” one of the patients at the care home told the Monitor.
“There are many issues here, when they donate food, they will only give us one cup of posho and another cup of beans; they keep the rest for themselves,” another patient at the care home claims.
With the hygiene situation and crowding at the care home, patients and caretakers are risking to sleep on veranda of the hospital, exposing themselves to malaria and other infections.
Some can also be observed sleeping under trees at the care home, especially those who fail to get accommodations.
Health minister laments
The worrying situation at UCI was echoed by the Health minister, Dr Jane Ruth Aceng as she appeared before MPs last week to seek for more funds for cancer care in the country.
"The doctors are very few and overwhelmed with work. If you stepped inside Uganda Cancer Institute today, from the door way, corridors, even near the washrooms, there are patients. In other countries, they don’t work like that. You will have one doctor attending to one or two patients in a day, these ones, see how many in a day! In huge numbers, anyone would get tired and not do exactly, what you would want to do," the minister said.
"That is why we need to train as many [oncologists] as possible, but also, we need to recruit them and also remunerate them better," she adds.
According to the 2023 report by the Office of the Auditor General (OAG), the congestion and long waiting hours was also being experienced at another treatment centre in Mbarara and that patients were sleeping on the floor.
“The bed occupancy rate was 99 percent and 201 percent for UCI main centre and Mbarara regional centre respectively. Additional beds had been provided within the wards to cater for higher numbers compared to the UCI design capacity which was 114 beds, resulting in congestion [including being placed on floors]. This exposes patients to the risk of hospital-acquired infections,” the report reads.
This bed capacity is too low when compared to the estimated number of persons with cancer, 62,000 as of 2020.
However, not all cancer patients require admission in the course of the treatment, especially when they come early for diagnosis and care.
According to the audit findings, essential medical supplies such as intravenous fluids and gloves at the UCI main centre on Mulago hill were stored in corridors of patient wards due to the absence of storage space for these supplies.
The Uganda Cancer Institute in Mulago National Referral Hospital. PHOTO | FILE
“This took up already limited space for provision of services. I also noted lack of space to store equipment that was not installed at the time of the audit. For instance, PET [Positron emission tomography] equipment was stored in the area meant for patients waiting for radiation oncology [cancer] treatment, while boxes of medicines were stored in [the] wards and at the outpatient department,” the AG report reads further.
Audit recommendations
In his recommendation, the Auditor General asked the head of UCI, Dr Jackson Orem who happens to be the Accounting Officer to “expedite the completion of the multipurpose building and the 350-bed inpatient building so that all uninstalled equipment is installed and made available for the service of patients.”
On the issue of staffing gaps, the Auditor General directed the accounting officer (UCI) to “liaise with the Ministry of Finance Planning and Economic Development to ensure operationalisation of the new staffing structure to ensure faster service delivery”.
The OAG also advised the accounting officer to “ensure that a proper needs assessment is undertaken to ensure that the planned regional centres are adequate to manage the burden of cancer in the respective regions.”
He also called for expediting “the completion of the infrastructure at the institute and satellite centres to create more capacity for managing patients.”
