Life-changing Epilepsy clinics in Uganda

All of us at the FP clinics – I am talking to parents about epilepsy and answering their questions!

I had been working at Kagando Hospital for nearly 4 months when the head of one of our partner organisations came to my house one evening.  It had been a horrendously busy day in the hospital and at the end of a particularly tough month.  This was not the first time he had visited me and I really struggled with his visits, not because he was unreasonable or difficult, but because they often highlighted the overwhelming need in the community, much of which we were shielded from in the hospital.  After the wonderful welcoming rituals of Uganda were observed, we got down to business.  He started by asking whether I had thought more about his suggestion of going into the community to treat epilepsy.  Not for the first time, I told him that I did not think it would be very productive as we only saw one or two patients every month in the free epilepsy clinics at the hospital.  He said that he knew of many families that were struggling to access care. He told me of the myths and superstitions that fogged the community and how scared people were of travelling to the hospital as a result.  His ask was simple: ‘come and see’.  This was the fourth time he had asked and I did not have the heart to say no.  We booked an afternoon and I said I would drive us to a school where we would meet everyone he could find with epilepsy.

The next week we met in the afternoon with another member of the partner organisation on a Tuesday.  I had been up most of the night with a very unwell baby and I got into the car and drove to the school.  The journey took nearly an hour and involved driving along ‘roads’ that would be better described as small gaps between trees.  As we approached the school I saw maybe 50 children playing outside and assumed that the school day was still ongoing.  I asked where we would see the kids with epilepsy but I was told that all these children had epilepsy and were waiting to see me.

I was woefully underprepared.  I had no paper, no pen and I had told my family I would be back in an hour or so.  I bought a school work book from a child and we got to work seeing all the children.  We started the clinic at 3pm and I saw the last patient at nearly 8pm.  They all waited patiently.  I could not believe the histories that I was being told.  There were children from all ages who had epilepsy for all sorts of reasons.  It was overwhelming.  We started the majority on medication for the first time but the longest part of each consultation was spent explaining what epilepsy was, that it was likely to need life long treatment and that the effects of the treatment would not be instant.

Parents and older children being educated about epilepsy

We all left exhausted but equally excited as it seemed that we could really make such a difference.  The need was enormous and completely unmet. Very quickly, George (who was a clinical officer at Kagando) came to help.  The partner organisation arranged 4 clinics spread over 2 days each month, a model borrowed from the very successful HIV projects around Africa.  As George and I came to the first of 2 clinics we could barely reach the health centre for all the people.  We saw one hundred and seventy people.  They had all heard about the clinics thanks to the wonderful community work of our partners, and our experts were able to provide essential education to a huge number while they waited to see one of us in the clinic. I was so excited and then immediately frightened!  How would we pay for all this?  I made a panicked plea to my fellow trustees in Accomplish who rallied around the clinic and committed to funding the work.

People waiting to be seen

In those early days I met Thembo (name altered).  He was 13 years and had his first seizure at age 7 years.  He had never received treatment and I remember clearly how frightened he was at that first clinic.  He had been taken out of school, beaten and given hallucinogenic herbal medicines on many occasions, often forced on him by local witch doctors.  He spoke very quietly and George spent a long time talking with him and reassuring him.  Thanks to the wonderful work that the partners were doing in the community, he was back in school in a month and was seizure free.  Five years after the start of the clinics, I was visiting Uganda and able to join George who was now leading the clinics.  He introduced me to this same young man who was now 18 years.  George patiently translated as he told me that he had come to the clinics, gone back into school, had got a job and was now getting married.  These kind of stories are now so frequent that we have had to alter our guidelines to include advice around pregnancy, driving and a multitude of other activities that are only possible as George and the team give so many people their lives back.

Young boy who walks for 4 hours to reach the clinic from Congo.  He is now much older!

As the clinics grew and the success became so clear, these clinics moved from under trees in grassy fields to village halls and health centres with medical professionals and community leaders wanting to play active roles in providing care to these clinics.  Still now, we see new patients coming to these clinics that have been running for nearly 15 years.  The contrast between the frightened parents and children coming for the first time, and those that have been coming for years, full of confidence, is a continuing reminder as to the importance of these clinics.  George and the team have become well known in the communities as they have pulled people from the water when a flood in Kasese swept away homes in the night before a clinic was due to take place.  They have trekked long distances by foot to reach the clinics when bridges have been washed away.  They have been invaluable during COVID lockdowns when food shortages were so frequent.  They are part of the communities they serve.

Pharmacy team making up medications to dispense

The gap between those who need epilepsy treatment and those that receive it is huge and nowhere more so than in Uganda.  As most funding for healthcare in Uganda comes from abroad and is woefully small, there just are not the resources for the government to meet the need.  We have recently replicated these clinics in another area of Uganda, Fort Portal.  Using the same model of Education, Diagnosis and Treatment, these new clinics have been equally successful and are growing at a rapid rate. 

Picture from the clinic door at the Bwera clinic – those hills are in Congo.

With this growth comes a need for funding and we desperately need your help. It costs just £2 a month to provide a child with epilepsy medication. If 100 people were to give just £2 a month we could fund the medication to enable another clinic to run. Could you and your friends be part of this and help us change more children's lives enabling them to grow up without fear and stigma?