Treating the hardest to reach: reaching the final trachoma cases in Namutumba District, Uganda

10 April 2017

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Rosi Jack, Communications Manager for CBM UK, reports on a recent visit to Uganda, where she met the team reaching the final cases of people suffering from trachoma in their area.

In Namutumba District in eastern Uganda, people no longer live with the threat of catching trachoma, a painful, blinding eye infection. Thanks to years of concerted action by the Ugandan health authorities, supported by The Queen Elizabeth Diamond Jubilee Trust and members of the International Coalition for Trachoma Control (ICTC) including CBM, people are no longer at risk of catching the infection. It used to threaten children in particular, as the infection is highly contagious and easily passed between family members and friends.

“We don’t see examples of children with trachoma now,” explains James Murambwe, who has been part of the District Eye Health Team for 10 years. “Now we only see old people with complications of trachoma in this district.”

The final challenge in Namutumba has been to reach the last people still living with the devastating long-term consequences of repeated trachoma infection – people such as Nasani, a grandfather in his 80s. Nasani has had sight problems because of trachoma since 2008. Trachoma causes the eyelashes to grow inwards so they rub against the cornea, and these effects forced him to retire early from his job as a teacher. “The eyelashes were touching my eye,” he explains. “I was not able to see the blackboard or read the books.”

With his poor sight, constant pain and watering in his eyes, Nasani struggles to look after himself. Like most people in this rural area, he used to grow his own beans, maize and potatoes, but now he relies on his grown-up daughters to look after him. This has had an impact on the whole family – Nasani’s daughter used to earn money buying fish at landing sites and selling it, but now there isn’t time as she needs to care for her father.

I met Nasani outside his two-room brick hut. Nearby, one of CBM’s Ugandan partner hospitals is running a three-day outreach camp, set up in a local health centre to treat patients such as him, funded by The Queen Elizabeth Diamond Jubilee Trust. Patients suffering from the advanced effects of trachoma – known as trachoma trichiasis (TT) – can undergo a simple operation under local anaesthetic to flip their eyelid and stop their lashes scratching the eye.  It cannot repair the scratching that has already occurred, but it does prevent it getting worse.  And without the pain and watering, the patient is able to see again. Treatment is free and patients are collected from their home and dropped back the same day.

Yet despite Nasani’s current difficulties and the huge benefits of treatment, he has been very reluctant to have surgery. Local Village Health Team volunteer Isabirye Mugulwa has visited regularly to explain to Nasani and his family that the surgery will relieve his pain and improve his sight, and without it he will go completely blind.

“I tried to convince him several times,” explains Isabirye. “At first he refused. The main issue is fear. People think that after the operation they will no longer be able to see. So I had to convince him, to give him examples of some of his neighbours, people he knows, who have had the operation.”

Training and supporting Village Health Team volunteers such as Isabirye has been vital for tackling trachoma in Namutumba and other districts in Uganda. Volunteers work in their own communities to identify people with conditions such as trachoma and inform them about treatment that is available. Crucially, they are trusted by friends and neighbours, who help people overcome their fear of treatment. While most people find the idea of eye surgery daunting, this apprehension is compounded in areas where many people have never visited a hospital or had an operation. Fear is a huge barrier, especially among the elderly.

Village Health Team volunteers work closely with the district eye health team, including Ophthalmic Clinical Officer James Murambwe, referring all patients with eye problems to them for diagnosis and treatment. James also regularly encounters patients who are reluctant to have surgery. “There is fear – fear of surgery. That is the main problem,” he explains. “They sometimes misinterpret that when you are taken for surgery you might be left blind.”

James has met Nasani several times, and is with us today to encourage Nasani to come to the outreach clinic for treatment. After a final eye examination, Nasani agrees to come with us for surgery. James leads him to the waiting 4×4, which is used to collect patients with trachoma who need a sight-saving operation. There is no road to Nasani’s house, just a narrow, bumpy mud path, so a less rugged vehicle would have no hope of getting here.

Fortunately, project driver Edmund is used to such roads – and much worse. He has driven patients to and from outreach camps all over this region and in other parts of Uganda. There are few cars on local roads here; most people get around by walking or taking a moped taxi from the nearest village. So transport to and from the outreach camp for surgery is vital to ensure patients – mostly elderly and all with low vision – can be taken for treatment.

A short while later, we arrive at Nsinze health centre, where a temporary operating theatre has been set up to carry out TT surgery. After a final eye examination and a general health check by nurse Janet, Nasani finally has the procedure he needs to stop his eye lashes scratching his cornea, putting an end to nearly 10 years of pain and sight problems.

The next day, we return to Nasani’s house with Village Health Worker Isabirye, so that James can remove his bandages and check that the surgery has been successful. Nasani can’t see much today because of the antibiotic ointment that James uses to prevent infection, but the family gather round to express their gratitude.

Nasani is hopeful that soon he will be able to see clearly and be able to look after himself, growing crops such as maize and beans. Isabirye is delighted that Nasani has finally agreed to the operation and that life will be easier now for the whole family.“I feel happy, of course”, he explains. “They have been suffering a lot. But now things will be better for them here because Nasani can carry out his [household] duties. Now that he’s had the operation, he will be comfortable.”

Surgery to treat trachoma trichiasis takes less than 15 minutes. But for many patients, surgery marks the end of months of visits, gentle persuasion and reassurance by the village health and district eye health teams. Thanks to the concerted efforts of the team in Uganda and supporters who enable this work to happen, Nasani and others like him can now live free from pain, able to see more clearly, visit friends and neighbours and care for themselves. Trachoma trichiasis has now been eliminated in this area of Uganda – it’s amazing what teamwork can achieve.

Picture above: Isabirye Mugulwa with Nasani at his home. The Village Health Team volunteer has worked closely with Nasani and his family to help him overcome his fear of surgery. ©CBM/Trenchard