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Health and Peace Recovery: Situation Report on Nodding Syndrome Case Management

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This report is a follow up on the developments associated with Nodding Syndrome (NS) in northern Uganda. It serves as a catalyst in advocacy for sufficient response to the plight of NS patients in post conflict northern Uganda. It calls for the establishment of conditions that canmeet the basic needs and aspirations of the victims as was observed in the International Scientific Meeting on Nodding Syndrome in August 2012 in Kampala. Though the report is limited to developments associated with Nodding Syndrome disease in Kitgum district, it serves as a reminder to concerned stakeholders that the NS remains a challenge and needs an adequate response.

This report entails a summary of key issues, responses and challenges noted in the response to NS in the region. It draws on the case management progress reports compiled by Kitgum district local government which has been enriched by Refugee Law Project’s continued engagement with the affected communities in Kitgum, Pader, Lamwo and Gulu districts in understanding the dynamics associated with the Nodding Syndrome and the recovery of the affected victims.

The Refugee Law Project has been on the forefront of articulating conflict issues associated with Nodding Syndrome in post conflict northern Uganda. The first highlight was on the 22nd of January, 2012 when the RLP team visited Tumangu village in Lamit Parish, Akwang Sub County Kitgum district. The briefing note that was produced influenced concerned stakeholders to act. This report draws on our recent visit, to Kitgum from the 12th to the 14th January, 2013.

The visit aimed at analyzing progress already made in the fight against the Nodding Syndrome. During the visit, the team interacted with a total of 66 respondents (28 females). These included; a doctor in charge of Kitgum General Hospital, community members, village health teams, elders and the office of the Chairman LCV of Kitgum. The analysis in this report is complemented by data from Kitgum general hospital and Kitgum District Local Government.

Following the first International Scientific meeting on NS held between July-August 2012, in Kampala, Uganda several commitments where pledged by different stakeholders. Key recommendation was formation and activation of a National Task Force. This report sheds light on what has so far been done in response to the Nodding Syndrome as well as the current concerns of NS victims. Also this report helps policy makers to rethink and reframe policy responses in light of the Nodding Syndrome in conflict sensitive context. Undoubtedly, the health sector and the status of the health of post conflict constituents have a great correlation towards contributing to sustainable livelihood, peace recovery and a fight against poverty age 4 of 14

reduction. The promotion of good health is strongly called for in the Millennium Development Goals (MDGs) and Uganda is a signatory to this commitment. Though there are recognizable efforts towards improving service delivery in the health sector and realization of the MDGs. NS is one of the factors threatening the attainment of MDGs in post conflict communities such as northern Uganda.

The Nodding Syndrome is largely recognized as a threat to families and households of affected victims in the districts of Pader, Kitgum, Lamwo and Gulu. In response to curb the ailment, the government of Uganda with support from development partners established treatment centres in Kitgum General Hospital, Atanga HC III and Gulu Regional Referral Hospital. The Ministry of health also carried out aerial spraying in a bid to get rid-of the black flies suspected of spreading or causing Onchocerciasis. The health Ministry has been relying on epilepsy drugs to control and manage the conditions associated with NS. Through the Office of the Prime Minister (OPM), patients have been feeding on fortified foods which are said to have helped in boosting their immunity.

Despite the above commitments by the Government of Uganda in responding to the problem of Nodding Syndrome, there are still challenges being faced. As a result, critics have condemned government for its slow and sluggish response to the disease. Regardless of the numerous and extensive investigations, the cause of NS is yet to be known – implying that the patients will have to remain on treatment and monitoring for unknown period of time. This has instilled anxiety and feeling of hopelessness in the affected children and their families.