Accomplish’s pioneering approach to treating epilepsy in rural Uganda continues to expand, shining a light on epilepsy and bringing many children out of the shadows.
A decade ago, epilepsy often went untreated in the Rwenzori region of western Uganda, leaving children unable to attend school because of seizures and young people unable to go to work and earn a living. Worse still, epileptic seizures still carry a stigma in rural Uganda. Some people think that children with epilepsy are cursed or that epilepsy is contagious, so families tend to hide children away out of fear or shame.
The situation began to change in 2012, when Accomplish trustee Dr. Chris Harris and Clinical Officer Bwambale George from Kagando Hospital established the first rural clinics to treat children with epilepsy in the Rwenzori region. These initial clinics gave prescriptions and medication to 200 children every month. Very soon, more than 400 people had enrolled in the programme.
Education is a key part of the epilepsy clinic model. Social worker Sharon, who is part of the clinical team, has been working hard to change people’s attitudes towards epilepsy so that more parents bring their children to clinics.
As the clinics’ reputation spread, Dr. Chris wrote a programme of training for diagnosing epilepsy in children. Five other hospitals requested copies of these guidelines. The programme has also been published in international journals, alongside data from the clinics, receiving interest from many different countries.
Before the COVID-19 pandemic hit, the epilepsy programme grew from four to eight monthly clinics. The Kyaninga Child Development Centre (KCDC), one of our partner organisations in Fort Portal, Uganda, got involved with running some of the clinics. KCDC has received requests from other rural regions for epilepsy clinics, which is a huge compliment to the work of George and his team.
However, due to lockdown, the four new clinics had to shut temporarily. Uganda introduced strict travel restrictions so patients were not allowed to go to clinics (although medical teams were still permitted to travel.) Therefore it was extremely difficult for many of the children to receive their monthly supply of medication. George and his team made heroic efforts to reach their patients, for instance by delivering medication to local health centres for patients to collect. This arrangement was only possible due to the great relationships the epilepsy team has built with local healthcare providers.
Throughout the pandemic, the team has been worried about patients missing clinics. Nathaniel (not his real name), who lives in the Democratic Republic of Congo, walks for days every month across the border into Uganda to reach one of our clinics. He has made this arduous journey for years, but because of lockdown restrictions he missed two clinics. However, to the team’s huge delight, Nathaniel made it to the clinic in June. Five new children also attended that clinic, including a girl who has cerebral palsy as well as epilepsy.
We are pleased to report that all eight epilepsy clinics have now reopened, which means that approximately 800 children are receiving treatment for their epilepsy, totally changing their lives.
Accomplish’s epilepsy work is funded by grants from organisations in the UK such as the Kate Farrer Foundation, and in Uganda, such as the Kasese Mission Hospital, as well as donations from individuals. We are seeing new patients coming forward every week and would like to continue expanding our clinics to meet this demand. A monthly supply of epilepsy medication costs just £1 per child and enables people to go to school or to work, and to lead full lives.