David Kakoza, 14, would feel weak most of the time. He had pain and swelling in the knee joints.
While writing his last test in September 2018, he fainted and was immediately rushed to a clinic in Kayunga District but was told to get better treatment.
His sister then took him to Kabugu Hospital, a nearby government hospital.
“When we went to Kabugu Hospital, my sister was told that my haemoglobin levels were very low but they suspected that I had cancer. So I was referred to Uganda Cancer Institute (UCI),” he says.
At the cancer institute, a week after tests were done, Kakoza was diagnosed with leukaemia and was admitted to the children’s ward.
“It was the last week of September when I was admitted to the ward but my sister, who is about 17 years old, was the caretaker because our mother passed on. It took me two weeks to get the first cycle of chemotherapy which affected me a great deal,” he recalls.
After three weeks of chemotherapy treatment, Kakoza needed a break and had to go home but would return later for more doses. For two weeks, however, they did go home because they did not have transport.
Kakooza’s sister had tried to ask people around if they would give them some help but she had not succeeded. One day as a social worker was walking around the ward, she approached her and she took them to Kawempe Home Care.
“While at Kawempe, we were given enough meals, a bed and transport (Shs50,000) back home, a week after,” Kakooza says.
He, after spending more than a month at the UCI, had to go and sit for his Primary Leaving Examinations. He was to return for more treatment at the beginning of December but his sister had not found time to take him back.
In January this year, he developed swollen joints again. So his sister called Kawempe Home Care management to provide transport to take him for treatment.
She went back home after knowing that the brother was safe.
Since January, Kakoza stays at Kawempe Home Care as he continues with treatment but may not be able to continue with his education because his sister does not have the money to pay for his school fees. The sister checks on him once in a while.
“I feel much better with the treatment and wish I can be a doctor to treat other people but unfortunately, I do not go to school,” Kakoza says.
According to Kyadondo Cancer Registry, about 7,000 children get cancer every year and at UCI, only 500 children were able to receive treatment in 2017.
The institute is the only comprehensive paediatric cancer treatment centre in Uganda, making it impossible for every child to get adequate services.
With limited access to specialised psychosocial support to disadvantaged children, Kawempe Home Care has taken the initiative to provide palliative care to the children.
Dr Samuel Guma, the executive director of Kawempe Home Care, refers to palliative care as a network of carers for the physical, mental and spiritual wellness of a person with a chronic illness to ensure that they are pain-free and without any worries.
The home has cared for 414 children since its inception in September 2016 and 106 of them have completed their treatment. He says some are still continuing with treatment while others passed on.
“We ensure that no child is in pain and support them to take their medicine as prescribed. We also provide meals, transport to hospital when they have to meet a doctor, a place to sleep and play therapy for children that are not good at socialising with others,” Dr Guma says.
Dr Joyce Balagadde, the head paediatric oncologist at UCI, says: “This social support intervention has helped us retain these children in care because most children are abandoned and are unable to get the required treatment.”
Dr Guma has seen many children at Kawempe Home Care and among the many sad experiences, he recalls a child who was living with albinism and then suffered skin cancer due to much exposure to the sun.
“The boy had been rejected by the father but the mother stayed strong to look after him. She would go with him in the garden to dig and would spend long hours in the sun so he got skin cancer,” he says.
He adds that by the time he was taken to the cancer institute, the mother needed a lot of money for the scans and other vital exams.
“He was put on radiotherapy for two months but the cancer had advanced and it was not helpful. He was in a lot of pain and his health kept deteriorating,” Dr Guma says.
He says the boy was given oral morphine to manage the pain but even after seven months of treatment, his cancer was incurable.
“He was then referred to Hospice Mbale where he would be given oral morphine and six months review but with less hope that he would see another day. The boy is still alive and has lived for five months since he was discharged from Kawempe Home care,” he says.
Besides children, there are some adults that get palliative care services free from Kawempe Home Care. Patients from UCI and the community are referred to the centre for psychosocial support, and pain and symptom management.
Ms Zaitun Ssali, at Palliative Care Association Uganda, says: “No cancer treatment can be effective without palliative care because they go hand-in-hand. Once a person is diagnosed with cancer, they are supposed to be enrolled on palliative care although there has always been a thought that palliative care is only supposed to be given at the end of life.”
The palliative care is usually a home care based service where nurses, doctors and the counsellors go to the home of a particular patient and give them oral morphine for pain, do wound dressing for patients with bed sores and chronic wounds that take long to heal.
According to the World Health Organisation fact sheet, palliative care is most effective when considered early in the course of the illness. Early palliative care not only improves quality of life for patients but also reduces unnecessary hospitalisation and use of healthcare services.
Recognised. Palliative care is recognised throughout the world and in May 2014, World Health Assembly passed a resolution calling upon World Health Organisation (WHO) and member states to improve access to palliative care, with an emphasis on primary healthcare, community and home-based care.
Recommendations. The WHO fact sheet, recommends that all people, irrespective of income, disease type or age, should have access to a nationally determined set of basic health services, including palliative care. Financial and social protection systems need to take into account the human right to palliative care for poor and marginalised population groups.
Challenges. Only one in 10 patients who need palliative care are able to receive it and most of them have late referrals because of the belief that such care is meant for end of life.
Funding. Most of the funds and resourcing geared towards palliative care come as foreign aid. The allocation of resources by the government is not even so some districts are lagging behind because of limited resources. Poor and inadequate logistics: transport, funds, stationary, storage facilities are challenging.