By Annika McGinnis
“Nobody should die in pain. Nobody should live in pain. We should all die gracefully with a smile, and we should live painlessly,” she told the crowd.
It was 15th October, World Hospice and Palliative Care day, and the Senior Medical Officer at the Ministry of Health, Dr. Jacinta Sabiiti, was speaking to a crowd of health care advocates in Uganda. Unlike their usual workday attire, the groups of health workers were clad in a rainbow of matching soccer uniforms, and they were stretching and jogging in the playground field. A group of Reach Out Mbuya staff was practicing headbutts.
Then the teams cheered, and the Soccer Gala for Palliative Care began.
On Saturday, 16 palliative care organizations in Uganda came together at Old Kampala Primary School Playground in a high-energy soccer tournament to champion the need for holistic medical and psychosocial services for people with terminal or life-limiting illnesses.
The gala began with a march by the Reach Out Mbuya Talents Club brass band around downtown Kampala. Youth involved in the organizations marched hand-in-hand displaying their banners, followed by a throng of uniformed schoolchildren of Old Kampala Primary.
Reach Out Mbuya brought a team of more than a dozen staff and finished in third place after five matches, with an additional award for being the most disciplined team.
The Palliative Care holiday coincided with the October marking of World Cancer Month. Palliative care is integral to Reach Out Mbuya’s approach to HIV care, since palliative care is a holistic approach to care for those with life-limiting or terminal illnesses such as HIV or cancer. It seeks to provide relief from pain and physical symptoms through pain management drugs such as morphine, as well as care for the emotional, spiritual, social and legal stresses that often come with such illnesses. Its goal is to improve the quality of life for those with long-term illnesses and their families.
The Gala was spearheaded by the Palliative Care Association of Uganda (PCAU), an NGO established in 1999 to advocate for accessible and culturally appropriate palliative care services in Uganda.
Since palliative care’s introduction to Uganda in 2003, today more than 90% of districts have services available. Still, though the Ministry of Health mandates that all accredited health facilities provide palliative care teams and stock morphine, just 15% of Ugandans who need such care actually receive it, Sabiiti of the Ministry of Health said at the gala.
One of the issues is that services are only available at the upper-level health facilities, she said, leaving those who attend lower-level clinics without access.
She added that worldwide, more than 18 million people are dying early due to lack of ability to deal with pain. But with services, they can live long and be productive, she said.
“You can have pain, but the pain can be controlled and you can still be productive,” she said. “Let us not let our people suffer in silence when the care is available.”
Along with Reach Out Mbuya, the gala was attended by a range of palliative care organizations in Uganda, including the Institute of Hospice and Palliative Care in Africa, The AIDS Support Organization (TASO), Kawempe Home Care, the African Prisoners Project, Joint Medical Stores, the Ministry of Health, Mildmay Uganda, Makerere Palliative Care Unit, the African Palliative Care Association, and Protecting Families Against HIV/AIDS (PREFA). The Uganda Deaf Society came to cheer, and even a group of journalists formed a team to compete in the tournament.
The Reach Out Mbuya team first beat PREFA 4-9, tied with Kawempe Home Care 1-1, and beat Mildmay 2-0. In the quarter finals, ROM beat JMS 1-0, but the team finished in the semifinals, when Mulago School of Nursing beat Reach Out Mbuya in the post-game penalties. Though the teams had finished 0-0, Mulago scored 4 penalties while Reach Out Mbuya scored 3.
Mulago took the gold, while IDI achieved second place and ROM ended third. The team’s spirits were further raised when Reach Out Mbuya was awarded a trophy for the best disciplined team. This meant the team was given few red or yellow cards, acted courteously toward the referees and did not fight with the opponents, said the ROM team coach, Ofwono Opwono. He added the team respected its female members rather than treating them roughly.
The ROM Roses of Mbuya tailoring workshop also displayed handicrafts at the Gala, including original African-style dresses, shirts, shoes, and handbags. The Senior Medical Officer at the Ministry of Health, Dr. Jacinta Sabiiti, bought two dresses.
As the gala began, the Country Director of Palliative Care Association of Uganda (PCAU), Rose Kiwanuka, emphasized the universality of palliative care. The government and Ministry of Health need to reiterate their commitment to increasing its accessibility to everyone in Uganda, she said.
The Hospice and Palliative Care Day is “to celebrate those who have gone away from this world to the next world in the hands of palliative care,” she said. “It is a day when we tell the world that palliative care exists, because everyone needs palliative care.
“Palliative care should be as available as air, because even if you don’t need it now, probably one day you will need palliative care,” she said.