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PARLIAMENT OFUGANDA
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1OTII PARLIAMENT
REPORT OF THE PARLIAMENTARY DELEGATION TO OMORO, PADER AND KITGUM DISTRICTS IN NORTHERN UGANDA ON A FACT FINDING MISSION ON THE SITUATION AND MANAGEMENT OF NODDING SYNDROME.
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Office of thc Clcrk to Parliamcnt )
March,2018
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Table of Contents
General Observations and Findin9s...... 5-15
Recommendations...... 13-14
List of Annexures
t. Composition of the Delegation Minute of Meetings Situational Report on Nodding Syndronrc in Omoro district submitted by the LCV Chairperson, Omoro District. iv. Contprehensive Report on Nodding Syndrorne Situation in Pader District submitted by the LCV Chairpers on, P ader dis tr ict. v Report by CANTAS Gulu on the project "lntegrated Support to mitigate the suffering of 600 households affected by nodding syndrorne in Northern Uganda. " yl. List of death since 20I 2 to date together with causes. vii. Accountability by Pader DLG on the expenditure of UGX 40, 56200/: viii. Proposed work plan for 2018 of Pader DLG on Nodding Syndrome Outreach ix. List of Children with Nodding Syndrome defiled or raped in Awere sub county,
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1. PREFACE
Rt. Hon. Speaker,
1. On behalf of a Delegation composed of Members of Parliament from different regions and political divide and pursuant to our critical role as representatives of the people of Uganda who voted us with the responsibility to look into their needs and to make their concerns heard in Parliament. In addition, the Rules of Procedure empowers us to discuss various issues of national and international importance. It is therefore my privilege to present to the House, the Report of this Delegation on its fact finding mission into the management of the Nodding Syndrome in Northern
Uganda. ll The investigations were necessitated by the halfhearted, lackluster and contradictory responses to this House by the Minister of Finance, Planning and Economic Development and the Minister of Health on the availability of the funds needed for the management of the nodding syndrome in Omoro, Pader and Kitgum districts.
I ll. Following the responses by the two Ministers, serious concerns were raised by Members and the public, through the media, on the capacity and the political will of the Government to handle this crisis. The concerned Members therefore constituted themselves into a Delegation which was endorsed by your Honorable Office and we resolved to conduct investigations into the matter with a view to recommend measures that will conclusively eliminate the nodding syndrome out of Uganda.
2. Executivc Summary
i. This report is in response to the continuing presence of nodding syndrome in Uganda and the deteriorating conditions of the patients and their families. Despite the fact that several commitments have been made by the Government since 2072, the plight of Nodding Syndrome patients in post conflict northern Uganda is deteriorating
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ll. The Report therefore serves as a call to the Government to act with sufficient determination and vigor against Nodding syndrome. The Government should fulfil its
core obligation to the citizens by providing basic medical services to the population.
This report entails a summary of key observations, f,rndings and recommendation noted in
the response to Nodding Syndrome in the region.
iv. It draws on the case management progress reports compiled from Kitgum, Pader, and Omoro district local governments following the engagement with the affected communities in Kitgum, Pader, and Omoro districts in understanding the dynamics associated with the Nodding Syndrome, support from the Central Government and the recovery of the affected victims.
v It states among others that the Government's intervention has been lackadaisical and ineffective. The only special centre for nodding syndrome had been operated by Hope for Humans Care Centre. However, despite of the fact that the centre has since been closed by the founders, the Ministry of Health is reluctant to take over the running of the centre.
vl The impact of the closure of Hope centre has led to poor management of the severe cases. Reports show that 2 deaths have occurred in Omoro with more cases relapging in the communities.
vll. Whereas the Government denies the existence of new cases of Nodding syndrome in the region, it was established that no comprehensive clinical investigations were conducted
on those new cases.
vlll. It was further noted that there has been a funding gap which has impaired the capacity of Local Governments to manage Nodding Syndrome. The Local Government receive all the monies for Nodding syndrome.
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The Report also took notes of prevalence of rape and defilement of teenage girls suffering from nodding syndrome and the few prosecutions of offenders.
3. Terms of Reference
The Delegation established the following terms of reference:-
l. Conduct an on spot check on the situation and condition of the victims and families; ii. Inquire into how nodding disease has been managed since the outbreak; ll1. Inquire into the mode and adequacy of government intervention and funding; iv. Inquire into the utilization of the funds; v. Establish the capacity of the Local Governments to handle the crisis; vi. Establish whether there are emerging new cases of nodding syndrome and what mechanisms have been put in place to handle them; vll Inquire into the adequacies of the facilities available for managing the victims and their families; and vlll Make recommendations to the House with respect to the observations made.
4. Stakeholders
The Delegation held a total of ten (10) Meetings and took both oral and written evidence from the following,
i. Areas Representatives in Parliament. ii. The LC V Chairpersons of Pader, Omoro and Kitgum districts;
lll The Chief Administrative Officers of Pader, Omoro and Kitgum districts; iv The Resident District Commissioners of Pader, Omoro and Kitgum districts, The LCIII Chairpersons of Odek, (Omoro) Awere, Atanga, Lagile (Pader) and Labongo- Amida (Kitgum) sub counties; vi. The LCV District Councilors for Awere, Atanga and Odek;
vii. The Omoro district Nodding disease Focal Person; viii. The District Health Inspectors of Pader, Omoro, and Kitgum, ix. The Former Nodding Disease Coordinator for Gulu and Pader districts;
x. Coordinator nodding syndrome task force Kitgum district; Dr. Akena Godfrey xi. Mr. Okello David, Program Manager CARITAS Gulu (Social Services and
); and -5- xll. Selected representatives of over 1000 victims together with their families and caretakers
5. General Findings and Obscrvations
Having held meetings, undeflaken fact finding visits and considered submissions from the Local Leaders, victims and their families, the delegation observed that;
5.1. Lukervarm approach and intcrvention by thc Ministry of I-Icalth
There has been a general failure and commitment by the Ministry of Health in systematically managing the outbreak of nodding syndrome. This is evident from the lack of coordination in the supervision of the crisis, poor response to the issues raised on the floor of this August House regarding nodding syndrome and the failure by the Minister to visit the affected areas since the outbreak.
ii. The Delegation established that with the exception of Hope for Humans care centres in Odek in Omoro district and Tamango in Kitgum which have since been closed, there is no specialized rehabilitation centre for nodding syndrome. The Government was offered land in Pader district which is the epic centre of the disease to establish a rehabilitation centre. However, up-to-date, no action has taken place leaving the children and families in vulnerable state.
iii. The existing health centres III's and II's which are being used to cater for the diagnosis and treatment of nodding diseases are over strained in terms of capacity and resources. They have few qualified staff to attend to both nodding cases and
other diseases.
iv. The Delegation learnt that there are instances of intermittent and irregular supply of essential drugs and medicines for patients with nodding syndrome. In Omoro district, the District Health Educator, Mr. Ojok Celestino informed the delegation that the irregular supply of drugs has occasioned relapse in the treatment of the victims who had fairly recovered during their stay at a centre operated by for lluntons Core Centre. Despite several calls district on /.,, -6- of the Ministry following the closure of the care centre, the Ministry did not take
this as a matter of urgent importance.
v. The same situation was also noted in Okidi Health Centre III in Labongo-Amida Sub County where the Government through the National Medical Stores delivered only 30 packs of Sodium Valproate expected to last for 2 months despite the high number of patients receiving treatment at the centre.
vi. The Delegation fuither observed that when there are also stock out of Sodium Valproate, a lower dosage is administered to the patients. This was reported to
have no significant impact on the patients.
vii. According to evidence submitted by the District Taskforce Teams on nodding syndrome, the Ministry of health has not followed up on the situation of the patients hence obtaining and relying on inaccurate and unverified data regarding
number of cases recorded and deaths from the disease.
5.2. Number of paticnts, dcaths and new cases reported.
A significant number of children still suffer from nodding syndrome in the region.
From the data obtained from the Nodding syndrome coordinators/Focal Persons in Omoro, Pader and Kitigum districts, the delegation established that Omoro district has 220 patients in the communities, 2 deaths reported since 2012 and 62
suspected new cases of nodding syndrome;
ii. Pader district recorded 2247 cases and 81 deaths since 2012. The Delegation noted with deep concern that most deaths go unrecorded, unverified and with no postmortem conducted. The district officials mainly rely on speculations and third parly information regarding deaths. This is an indication of poor handling of crlsls iii. Kitgum district has 583 registered patients with nodding syndrome. However, this number has slightly decreased to 267 patients as of April 2016 due to; rampant
deaths (57 deaths in Akwang, 58 recorded deaths in Okidi, 68 deaths in Kitigum Matidi and 20 reported deaths in Kitigum Municipality), disappearances and transfer of some patients to other districts.
iv. The Delegation took exception of the Minister of Health refutation of new cases of
nodding syndrome without a comprehensive clinical investigation.
v. We observed children as young as two months exhibiting clear symptoms of nodding disease. Several parents and victims testified to the Delegation of having
acquired symptoms of nodding disease as late as January 2018. At Atanga Health Centre III, the delegation found the following with newly acquired symptoms.
NAME PLACE OF RESIDENCE AGE YEAR THAT SYMPTOMS DEVIILOPED
Aryemo Scovia, Atanga sub-county t4 September,20lT
Onencan Boniface Anga-Gura sub-county r6 2017
Opwoya Phillips Atanga sub-county 9 March, 2018
Otim Simon Atanga sub-county t4 December,20l7 Kinyera Francis Laguti sub-county l0 September,20ll Opio Emmy Anga-Gura sub-county l4 January,2018
Opio George Atanga sub-county 9 November,2017
Okwera Derrick Laguti sub-county 7 February, 2018
Ojok Denis Anga-Gura sub-county 2 February,20l8
Kornakech Francis Atanga sub-county t7 January,2018
VI At Bolo parish, Awere sub-county, Pader district, the delegation registered over 20
new cases. The District Nodding Syndrome Coordinator admitted that no clinical
diagnosi s was conducted on the new cases. It was at the resolve of on
-8- /t the District Officials promised to conduct a clinical investigation in the coming
week.
vii. Whereas the Delegation concedes that it is not competent to conclude on these new cases, it found the omissions by the Ministry of Health to conduct clinical investigation, a clear manifestation of professional negligence and neglect of responsibility.
viii. The Delegation also noted that there is a weak mechanism for identifying, reporting
and diagnosis of new cases of the Syndrome.
5.3. Funding from the Ccntral Government
The Delegation further established that since the outbreak in 2012 and for the period to 2016, the Government has expended approximately UGX 157 Million to Pader
district, UGX l2 Million to Omoro district as operational funds with clear guidelines on use; a total of UGX 245 Million to Kitgum district from financial year 201412015 (UGX 75 million),201512016 (UGX 5l million),201612017(UGX 119 Million). The funds were to be utilized for; supplementary feeding of severally malnourished children, outreach programme by Health Workers, follow up patients, surveillance of new cases, and support for VHTs, Radio talk shows, security and political coordination by the Resident District Commissioners.
ll It was established that these funds were not only insufficient to address the crisis but
also were majorly utilized as operational and administrative expenses leaving little or
nothing for the victims and their families.
lll The relief food items, ox ploughs and seeds distributed by the Office of the Prime
Minister have been irregular and inadequate with many households missing; this has affected their farming productivity; a situation that curtails the ability of the households to provide basic needs to children with nodding lv Despite the good intention and support from Local and International NGOs, the Delegation was appalled by the directive from the Minister of Health to the district health authorities not to receive any support/assistance from any other sources other than government. This Delegation found this a very callous action from a senior Government official and should be condemned by the House.
In addition, allegation of misappropriation and diversion of funds appropriated to the ministry for nodding syndrome were cited during interactions with local leaders.
These cases involved the UGX 3.8 Billion and UGX 50 Million for identifying cases of nodding syndrome, and UGX 100 Million for opening and clearing gardens for affected households. The delegation could not establish whether these monies were received and utilized for the intended purpose. The district leadership of Pader and Omoro denied receiving these funds. This calls for a special audit.
5.4. Capacity of Local Govcrnments to manage the nodding syndrome
The Delegation established that despite being best positioned to work with household affected by nodding syndrome, the local governments are not adequately funded and equipped to manage the disease. With the limited resources, the bulk of which are spent on operational and administrative costs, the Local government's taskforce for nodding syndrome cannot respond to the crisis, nor monitor and manage the patients well.
ii. The District Taskforce teams only conduct field visits occasionally depending on the availability of logistics; something which seldomly is available all the times.
iii. The delegation found that most Local Governments lacked adequate trained health workers on nodding syndrome. At Atanga Health Centre III which is a treatment centre for nodding syndrome in Pader district, the delegation found only one Nursing Officer and one Nursing Assistant at the station handling both patients with nodding syndrome and other diseases. This was also the case at Bolo Health Centre III in Awere Sub County in Pader district iv. The district of Pader which has the highest number of patients with nodding syndrome in the Acholi sub region has a staffing gap of 47oh in the health department. This has significantly affected the management of nodding syndrome.
v. The few trained health workers are supplemented by the support of the Village Health Teams (VHTs) and social workers who also lack the requisite professional
expertise.
vi. The same situation was noted in Kitigum General Hospital which acts as marn referral for cases of nodding syndrome from lower health centre. The hospital facilities are not suitable for the care for the nodding patients. The Hall that was formerly used as shelter by "Night Commuters" during the LRA war was allocated to house both patients of nodding syndrome and mental ward patients.
vii. In all the health centres from Atanga, to Bolo, Okidi and Kitgum General Hospital, the delegation observed that both male and female patients share the same wards
with no privacy for the patients and their caretakers.
viii. The Delegation noted with concern, the failure by the Ministry of health to provide ambulances to the districts. The Delegation was shocked to learn that in the whole of Acholi sub region; only one ambulance was provided by the Ministry which has even been withdrawn for carrying out research leaving the Health centres in Omoro, Atanga, Bolo and others without an ambulance. The few motorcycles
used for monitoring were all grounded.
5.5. Lack of intcgratcd intcr-agcncy/ministerial coordination and planning
i. The Delegation also cited the lack of integrated inter-agency/ministerial coordination and planning in the managing of nodding syndrome, with each ministry and agency working on its own. The uncoordinated intervention has
occasioned wastage of resources and lack accountability
1 \,' t' ' N, ii. It was observed that a multi-pronged strategy in managing nodding syndrome involving educational support, nutritional support, psychosocial support, ffid health and medical support is best suited in approaching the crisis.
5.6. The dire humanitarian conditions of affected houscholds
Lastly the Delegation observed the dire humanitarian catastrophic conditions of the victims and families. Several members of the delegation broke into tears seeing the appalling conditions and traumatic suffering of the families and caretakers. Members physically observed the conditions of head nodding, seizures, stunted growth/malnutrition, and deterioration of cognitive abilities and severe injuries
through seizure-associated accidents.
ii. The communities have registered low productivity from farming and other income generating activities, The women who are the one mostly involved in the care of children suffering from nodding syndrome cannot engage in income generating
activities owing to the constant care required for a nodding child. This has worsened the level of poverty in the affected households.
iii. The Delegation was informed by CARITAS Gulu, an emergency relief and development arm of the Archdiocese of Gulu, that out of the 1000 households prof,rled frorn 2013 to 20151"2000 children are affected by nodding syndrome in
the parishes of Atanga and Awere sub counties.
5.7. Prevalcncc of defilcment and rape of victims
The Delegation noted the prevalence of sexual abuse and exploitation of teenage girls suffering fi'om nodding syndrome. The Delegation heard and witnessed some of the young pregnant patients of nodding syndrome and young mothers with nodding syndrome at Odek, Atanga and Bolo sub counties. Mr. David Okello, the
Q^ Program Manager of Caritas, informed the delegation that the centre registered
over 10 such cases since 2014 with only successful prosecution.
ll. In Awere sub-county, 44 cases of sexual assault against the victims of nodding
syndrome have been recorded so far; rape and defilement have been reported but offenders often go scot free with only 4 successful prosecution. Victims identified by the delegation were Arach Scovia, Ama lucky, Atino Joyce, Ajok Scovia, Lakica Prossy, Atim Mary, and Ajok Irene in Pader district.
6. RECOMMENDATIONS
The Delegation made the following recommendations:-
t. Since there are treatments available for nodding syndrome, proper clinical care of patients is primarily supportive. Patients with confirmed nodding syndrome should be cared for in a setting capable of safeguarding intensive and frequent monitoring. The Government
through the Ministry of Health should as a matter of urgency; a) Upgrade and enhance the existing facilities at Atanga, Awere, Laguti, Lapul, Angagura, Puranga, Aswa Ranch, Kilak,Angole, Lagile, Bolo,Lapuocwida,
Paibwor and Wipolo and other health centres for proper diagnosis and preliminary
handling of reported cases of nodding syndrome;
b) Establish a regional referral and rehabilitation centre for comprehensive and intensive management of children with nodding syndrome; c) Through the District Local Government, re-open and takeover the management of Hope for Humans Care Centres in Odek sub county, Omoro District and Tomango in Kitgum district.
d) Provide psychosocial support services for both the patient and their family; e) Provide special considerations for pregnant victims and mothers Pregnant women with nodding syndrome; The Minister of Health should recognize the gravity of the nodding syndrome and have it
prioritized in its activities as an emergency situation;
111 The Government should conduct a verification exercise with a view of establishing accurate data on the patients suffering from nodding syndrome, number of deaths and households affected by nodding syndrome;
IV The Government should urgently secure and allocate funding to the Local Govemments in accordance with their respective approved plans for management of nodding syndrome;
v Immediately take all necessary measures to ensure the physical and psychological integrity of all victims, families and caretakers in the region through the provision of basic
necessities including sufficient food and nutritional supplement and provide access to
basic services including special needs education;
Provide direct support to the farming productivity and access to income generating
activities of women and caretakers of households affected by Nodding Syndrome; vll Recruit and deploy more trained medical personnel to the affected districts;
vlll The Office of the Auditor General should conduct a special audit of all funds appropriated for managing nodding syndrome;
All stakeholders in the Justice, Law and Order Sector should expeditiously address the
issue of access to justice for nodding victims of sexual offences;
X Support the efforts of all national and local stakeholders to ensure the full restoration of normalcy in the lives of communities affected by nodding syndrome;
xl Guarantee the full cooperation of all government with local governments in managing nodding syndrome.
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7. CONCLUSION
RT. Hon. Speaker,
i. The Nodding Syndrome is not only an embarrassment to the nation but also a threat to families and households of affected victims in Acholi region sub region.
11. The Delegation would wish to inform the House that the people have been drained and their hopes have been shattered beyond repair. They are desperate for a lasting solution to this problem.
The Government is perceived to have neglected them. They are sick and tired of empty promises, tactful and rhetoric talks over nodding syndrome. Their only hope and confident lies in this August House.
1V We reiterate the voices of the people to the government that now is the time for action. The problem cannot wait for tomorrow. Kick nodding syndrome out of Uganda now.
Secure and allocate funds to the victims and their families now.
I beg to move
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-15- 't J COMPOSITION OF THE DETEGATION TO OMORO, PADER AND KITGUM DISTRICTS (NORTHERN UGANDA) ON AN OVERSTGHT V|SIT ON THE MANAGEMENT OF NODDING DISEASE SYNDROME. 2I SI IO 24IH MARCH, 20I8.
NAME SIGNATURE ,,,.1 I Hon. Abolo Dovid Ngoro county
<___-- 2 Hon. Aogon Silos Kumi municipolity
3 Hon. Orot lsmoel Konyum county
4 Hon. Ongiertho Jor Emmonuel Jonom County
5 Aruu county ac Hon. Odongo Otto <.
I 6 Hon Okin P.P Ojoro Chuo West Constituency 7 Hon.Wolusowoko Jomes Bunyole West County r- I Hon. Bigirwo Nyendoho Noroh District Womon Representotive, Buliiso ,, 9 Hon.Nombeshe John Boptist Monjiyo county M 10 Hon. Anguro Fredrick Tororo South Constituency @:14 11 Olonyo Gilbert Kilok South County
72 Achiro Lucy Otim Aruu North County MINUTES OF THE MEETING HELD AT KITGUM DISTRICT HEADQUARTERS ON 22ND MARCH,2OIS
AGENDA: l. Proyer 2. Communicotion from the nodding syndrome tosk force coordinotor; Dr. Akeno Geoffrey 3. communicotion from district heolth officer 4. Communicotion from the district choirmon 5. Communicotion from the leoder of opposition 6. Response to the choirmon's stotement by members of the delegotion MEMBERS PRESENT See ottendonce list ottoched otlrgIinlzola Proyer Prayer The opening proyer wos led by o district officiol
ot2lleIir.l20l8 Communicolion from lhe nodding syndrome Communication losk force coordinolor; Dr. Akeno Geoffrey From the He welcomed oll members ond nodding communicoted os follows; He briefed the syndrome task members on the bockground of nodding force syndrome citing thot the first cose wos coordinator reported in 20,l2 bul the crisis intensified in 2013. He further noted thot in 1950s nodding
7 syndrome wos reported in South Sudon, D ports of Comeron ond northern Tonzonio ond he indicoted thot such coses in the obove mentioned countries ore no more. He eloboroted thot so for kitgum hod registered 583 coses of nodding syndrome ond thot kitgum hospitol wos being used the link centre for treotment by other districts in the region ond the hospitol is used for referrol, treotment ond in potient monogement; he noted thot the government hos been providing mossive support in the monogement of the syndrome through provision of drugs, funds to the district. He reported thot the district hos only received UGX 245 million since finonciol yeor 2014115 to 201612017 ond thot this olwoys come with mondotory guidelines on how to use it. He observed thot it's the nodding coses thot hove eventuolly converted into epilepsy. He reported thot 267 coses hove been recorded os of April, 2016 o decreose due to deoths, disoppeoronces, improvement of some potients. OSllgflin,l2OLA communicolion from districl heollh officer; Communication Dr. Alex Olwelo reported thot ; from district i. Notionol medicol stores delivers timely health officer ii. Nodding syndrome is ossocioted with
2 river blindness iii. More heolth workers ore being troined ond new guidelines for such troining ore being put up to ensure professionolism. iv. Money is not enough to coter for the increose in potients v. Troining of VHTs is needed to bridge the gop vi. Community outreoch is done 3 times o week ond l0 heolth workers do the outreoch. Communicolion from lhe dislricl choirmon o,4l][Iin l2O18 He welcomed the members thonked Communication ond them for from the showing unity in the fight of nodding district syndrome however he expressed chairman disoppointment of the obrupt visit by the members citing thot if he wos informed he would hove prepored comprehensive reports on the motter. He reported thot oll the money received by the district wos properly occounted for. He further indicoted thot they ore doing oll thot they con do with the limited resources ot their disposol.
05/Min/2018 Communicotion From leoder of opposition Communication Hon. Winnie kiuo thonked the members for From leader of their potriotic indulgence in the issues oppositlon concerning Ugondons; she mode clorificotion to the district choirmon thot porlioment hos mondote to corry obrupt visits os to ensure
3 productivity ond complionce by locol a governments. She emphosized the need for unity ond non- portison politics on this foct finding mission so os to ensure progress in the fight ogoinst nodding syndrome. She expressed sympothy to the fomilies of the victims of nodding syndrome, promising to do whotever is in her power to ensure proper government. She further noted thot becouse it's o foct finding mission, communicoting of the trip moy be interpreted os o move to prepore or stoge focts.
Response from members of lhe delegolion lo oT lMinlzota Response from lhe choirmon's slotemenl; members of the l. Hon. OKIN P.P OJARA ossured the delegation to choirmon thot their visit is to find the truth the chairman's obout monogement of the nodding statement syndrome ond not to ombush him or his odministrotion. 2. Hon. Okot lsmoil emphosized the need for such visits ond colled upon the officiols to provide unfettered cooperotion for the good of children in the north. Thot such visit is o symbol to show thot the nodding syndrome is no longer o problem of the north but o problem for the whole country ond internotionolly.
4 a O8/Min/zOtA Closing remorks Closing Hon. Gilbert Oulonyo proised the delegotion remarks for their perseveronce ond thonked the coordinotors of nodding syndrome for their efforts in the fight. He olso noted thot they will endeovor to put the informotion gotten to streomline government intervention ond ossistonce. Hon. Winnie kizo thonked the medio for being port of the struggle ond oll heolth workers in the field helping the victims. Hon Okin P.P Ojoro stoted thot it's becouse of the time constroint ond other obligotions the teom hos thot the meeting is short but he encouroged the district teom to send ony relevont informotion ond promised to use such informotion for the betterment of the people. The meeting wos ended.
5 ATTENDANCE LIST FOR MEMBERS ON THE OVERSIGHT DELEGATION TO KITGUM DISTRICT 22ND MARCH 2O1B
NUMBER. NAME I HON. WINNE KIZZA 2 HON. OCHEN JULIUS 3 HON.AOL BETTY OCAN 4 HON.OLANYA GILBERT 5 HON.OYET SIMON 6 HON.ATIM BEATRICE 7 HON. SIZOMU GERSHOM B HON. AKELLO FRANCA JUDITH I HON. OKIN P.P OJARA 10. HON. OROT ISMAIL il. 12. HON. ANGORA FREDRICK
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MINUTES OF THE MEETING HELD AT PADER
DISTRICT HEADQUARTERS ON 22ND MARCH,2OIS
MEMBERS PRESENT; I. CHAIRPERSON 2. VICE CHAIRPERSON 3. DISTRICT SPEAKER 4. FORMER COORDINATOR NODDING SYNDROME GULU AND PADER DISTRICT 5. DISIRICT HEALTH INSPECTOR 6, SECRETARY FOR HEALTH 7. LC V choirperson MEMBERS PRESENT, ATTENDANCE LIST IS 01/Min/2018: ATTACHED
PRAYER 02lMinl2018: lntroduction of the delegotion Hon. Abolo Dovid gove o bock ground to the visit. Thot motters orose from the floor over controdictory communicotion by the minister of finonce ond the minister of heolth over the ovoilobility of funds for nodding syndrome' They come here on beholf of porlioment to inquire obout the situotion of the crisis whether we need funding under the supplementory budget or the next budget.
03/Min/2018 Communicolion From lhe choirmon He reported thot Poder is the most offected district in Acholi; . The district hos 2287 coses of nodding
1 syndrome ond hos recorded Bl deo ths . Thot there is inodequote support from the government . The 3 districts shore the some ombulonce . The von "ombulonce " is grounded becouse of mechonicol Problems; a Government pledged to upgrode Atongo heolth centre lll to o centre for nodding syndrome but nothing hos been done; o The district does not hove o centre for nodding syndrome potients to coter for rehobilitotion ond recovery a The closure of the centre I Omoro olso greotly offected Poder district becouse most of the victims come bock home.
o There is limited intervention bY government ond this hos resulted into less coses of improvement.
a He highlighted thot the centre in Odek wos only toking core of 30-50 potients yet the number of victims is grossing 2274.
a Atongo experiences irregulor supply of drugs.
a Reported thot the fomilies lock o source of livelihood. . He noted thot there ore rompont coses of defilement of underoge girls. . The district hos not registered ony new
COSES . Thot in 20l2here wos only one centre. o There is high coses of defilement'
2 ? He Recommended; l. Thot the government should support the fomilies ond victims of nodding syndrome' 2. Thot the government should build nodding syndrome rehobilitotion centres 3. Recognition of villoge heolth workers who hove exhibited couroge ond broveness in the fight of nodding diseose. 04/Minl20l8:Communicqlion From secrelory heqlth She stoted thot the heolth centre storted operotions in 2012 ond it operoted till 2013' However the stoff wos loter redeployed' she
highlighted ; i. The centre does not hove copocity to treot ii. The vehicles ond motorcycles ore oll grounded iii. The centre locks focilitotion of fuel iv. The centre is ovenrrhelmed by the huge number of coses. v. The chollenges in providing for the reproductive heolth concerns of the nodding victims. Closing remorks: he proised the officiols for coming ond providing insightful informotion thot will help to encouroge government to intervene' She closed the meeting.
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*e nu}*1 MINUTES OF THE MEETING HELD AT ATANGA HEALTH CENTRE lII IN ATANGA TOWN COUNCIL,
PADER DISTRICT ON 22ND MAR
MEMBERS PRESENT;
I. LC III CHAIRPERSON 2. LC V COUNCILLOR
3. DISTRICT SPEAKER ,PADER DISTRICT 4. WOMAN MEMBER OF PARLIAMENT; HON. ACIRO LUCY OTIM
MEMBERS PRESENT, ATTENDANCE LIST IS ATTACHED O1/Min/2018: PRAYER by the LC V councilor
02/Min/2018: lntroduction of the delegotion Hon. Abolo Dovid gove o bock ground to the visit. Thot motters orose from the floor over controdictory communicotion by the minister of finonce ond the minister of heolth over the ovoilobility of funds for nodding syndrome. They come here on beholf of porlioment to inquire obout the situotion of the crisis whether we need funding under the supplementory budget or the next budget.
03/Min/2018: Communicotion From the LC ill choirmon He reported thot Poder is the most offected district in Acholi; o Thot there is inodequote support from the
1, government , . The 3 districts shore the some ombulonce . The von "ombulonce " is grounded becouse of mechonicol problems; . Government pledged to upgrode Atongo heolth centre lll to o centre for nodding syndrome but nothing hos been done; . The district does not hove o centre for nodding syndrome potients to coter for rehobilitotion ond recovery . Ihe closure of the centre I Omoro olso greotly offected Poder district becouse most of the victims come bock home. . There is limited intervention by government ond this hos resulted into less coses of improvement. o He highlighted thot the centre in Odek wos only toking core of 30-50 potients yet
the number of victims is grossing 2274. o Atongo experiences irregulor supply of drugs. . Reported thot the fomilies lock o source of livelihood. o He noted thot there ore rompont coses of defilement of underoge girls. . He highlighted thot the district does not hove o chief mogistrote. He Recommended; l. Thot the government should support the fomilies ond victims of nodding syndrome. 2. Thot the government should build nodding
2 syndrome rehobilitotion centres 3. Recognition of villoge heolth workers who hove exhibited couroge ond broveness in the fight of nodding diseose. 04/Min/2018:Communicolion From the nursing officer Alongo heolth cenlre lll She stoted thot the heolth centre storted operotions in 2012 ond it operoted till 20.l3. However the stoff wos loter redeployed. she highlighted ; i. The centre does not hove copocity to treot ii. The vehicles ond motorcycles ore oll grounded iii. The centre locks focilitotion of fuel iv. The centre is ovenruhelmed by the huge number of coses. v. The chollenges in providing for the reproductive heolth concerns of the nodding victims. Closing remorks: Hon. Aciro Lucy proised the officiols for coming ond providing insightful informotion thot will help to encouroge government to intervene. She closed the meeting.
3 ATTENDANCE LIST FOR MEMBERS ON THE OVERSIGHT DELEGATION TO OMORO DISTRICT 2IST MARCH,2O1B.
NUMBER. NAME I HON. ABALA DAVID 2 HON.ONDONGO OTTO 3 HON.ONGIETHO EMMA 4 HON. BIGIRWA NORAH 5 HON.NAMBESHE JOHN BAPTIST 6 HON.OKOT PETER 7 HON. AOGON SYLAS
!**+-1 )* t'tr,tgc^ \'ta^ MINUTES OF THE MEETING HELD AT OMORO
DISTRICT HEADQUARTERS ON 2ISTMARCH. 20I8. AGENDA: l. Proyer MEMBERS PRESENT; l. LC lV CHAIRPERSON: DOUGLAS OKAO 2. CHIEF ADMINSTRATIVE OFFICER. 3. DISTRICT COORDINATOR NODDING SYNDROME: OJOK CELESTINO 4. DISTRICT SENIOR HEALTH EDUCATOR:
AGUMA PETER 5. DISTRICT ENGINEER: OBWOYA PATRICK 6. RESIDENT DISTRICT COMMISSIONER Delegotion: MEMBERS ATTENDACE LIST lS ATTACHED. 0l/min/2018: PRAYER by the district Chief odministrotive Officer
02lminl2O18: lntroduction of the delegotion Hon. Abolo Dovid gove o bock ground to the visit. Thot motters orose from the floor over controdictory communicotion by the minister of finonce ond the minister of heolth over the ovoilobility of funds for nodding syndrome. They come here on beholf of porlioment to inquire obout the situotion of the crisis whether we need funding under the supplementory budget or the next budget.
L 93/Min/2018 Communicolion From the districl choirmon District choirmon Okoo Douglos highlighted thot the first cose wos reported in 2012 ond there ore 62 new suspected coses but there is no clinicol comprehensive study conducted on the 62 new coses. He expressed disoppointment on the stotements by the Minister. The district never benefited from the 3.8 billion ollegedly given. The district never received the UGX 150 million thot wos ollegedly eormorked for opening up gordens ond for identificotion of nodding syndrome potients. He further noted thot whot the office of the Prime Minister delivered wos not exclusively for nodding syndrome victims but for the whole community. He reported thot Odek heolth centre lll wos used to receive drugs on beholf of Hope for Humons centre. He noted thot the government os no centre in Omoro district thot oll centres were estoblished by NGOs ond this only confirms the neglect by the ministry of this crisis. He further highlighted thot; i. Regulor supply of drugs to the heolth centers. ii. The minister of heolth troined 25 heolth workers. He further noted the chollenges resulting from the closure of the Hope For Humons centre; i. ond this hos resulted into 2 deoths of the potients, ii. increosing coses of relopse of former
2 potients of the centre , iii. inodequote funding to the district only UGX 12.4 million ovoiloble ond it hos been occounted for, iv. no ombulonces to tronsport the sick, lock of speciol needs educotion centers he recommended; i. ollocotion of 20 million to the district to open up the centre ii. regulor ond prompt distribution of funds iii. provision of oxen ond ploughs to support the fomilies of persons with nodding syndrome iv. Upgroding of the centre into integroted speciol needs centre.
04lMin12018 ln reply Hon. Wolusowoko Jomes expressed Reoclions from disoppointment ond onguish of the woy the members of the Ministry wos neglecting its duty to sick children in delegotion Omoro district; he proposed for the immediote re opening of the hope for humons centre ond the provision of the ombulonce by porliomentory commission to help in logistics. He further ordered for the immediote explonotion of the whereobouts of 3.8 billion shillings. Hon Gilbert Olonyoh on o point of clorificotion requested thot the choir to clorify where UGX 150 morked for identificotion of nodding potients wos obsorbed. The members proposed o forensic oudit by the ouditor generol
3 The members expressed their disoppointment on the lock of on ombulonce citing thot emergencies connot be postponed therefore there is urgent need to rectify this problem. They olso highlighted the need to strengthen outreoch progroms ond livelihood support to the fomilies of the victims. The delegotion olso urged the government to promote ond ensure inter-ministeriol intervention in the motter. O5/Min/2018 Closing remorks Closing remorks Hon. Gilbert Oulonyo proised the delegotion for their perseveronce ond thonked the coordinotors of nodding syndrome for their efforts in the fight. He olso noted thot they will endeovor to put the informotion gotten to streomline government intervention ond ossistonce. Hon Okin P.P Ojoro stoted thot it's becouse of the time constroint ond other obligotions the teom hos thot the meeting is short but he encouroged the district teom to send ony relevont informotion ond promised to use such informotion for the betterment of the people. The meeting wos ended.
4 ATTENDANCE LIST FOR MEMBERS ON THE OVERSIGHT DELEGATION TO OMORO DISTRICT 2] ST MARCH , 2018.
NUMBER. NAME I HON. ABALA DAV]D 2 HON.WINNIE KIZZA 3 HON.ONGIETHO EMMA 4 HON. BIGIRWA NORAH 5 HON.NAMBESHE JOHN BAPTIST 6 HON.OKOT PETER 7 HON. AOGON SYLAS B HON.OROT ISMAIL I HON. AKELLO FRANCA .l0. HON. ATIM BEATRICE I HON.OKIN P.P OJARA 12. HON.OLANYA GILBERT 13. HON.ANGORA FREDRICK 14. HON.AOL BETTY OCAN 15. HON.SIZOMU GERSHOM 16. HON. WALUSWAKA JAMES 17. HON. OKOT PETER tB. HON.OCHEN JULIUS
Se*^"&^"1 YJ )utt.t,ho^ h'
OMORO DISTRICT LOCAL GOVERNMENT OFFICE OF THE DISTRICT CHAIRPERSON Telephone: +256 -7 82925451 P .O BOX 252, GULU - UGANDA. ln any correspondence on this Subiect p/eas e q u ote C R/ODLG/354/3 Date:21st March, 2018
The Chairperson, Select Committee of Parliament
SIT'UATIONAL REPORT ON NODDING SYNDROME CLIENTS IN OMORO DiSTRICT
Gsocl l{ealth end Prosperity!
I on beliaif of Omoro District Local Government, have the pleasure to warmly welcome you arjcj ',he Members of select committee of Parliament to Omoro on this 21st day o1' l'1arch 20iBl Certainly, We are in pain as our children are sick with Nodding Syndrome and some have died as I will indicate shortly but We believe your coming to share our pain and tears is part of the solution to this plight. This report is an overview of Nodcling Syr:drome situation in Omoro and recommencjations to save lives.
As you at'e aware, Omoro District was curved out of Gulu and became operational with effect from i't July 2016. It comprises of 7 sub counties, 29 parishes and 149 villages. Howeter, m'--rre administrative units have been created and become operational by 1t: July 20i8.
The irrsl c;se of Nodding Syndrome (in Gulu and Ornoro) was reported on the 12t March 2072 ii Aronro-wanglobo,Lamola parish in Odek Sub County and other places in Gulu. Until ;itid December 2017, Hope for Humans Care centre was supporting an average of 30 Nodding Syndrome clie^ts on full time admission annually. This Centre closed down prematurely and the needy clients are suffering at their homes with litUe or no care. Currently Omoro has about 220 clients in the communities of Odek sub- county, The health sector is investigating reported 2 suspected new cases of Nodding Syndrome. Since 2012 todate clients have died in Omoro.
INTERVENTIONS
1. Ministry of Health through National Medical Store (NMS) regularly supplies Nodding Syndrome medicines and supplies to Odek HCIII to manage Nodding Syndrome Clients. I
2.Ministr-y of Health lras tiairrcd 2-5 health workers of Omoro todate in management of Nodding Syndrome.
3,Active Case Search. This activity is carri:d out by the VHTs and social workers within the affected sub-county, Odr:k. Rumors about the cases are followed up and screened to ensure no missed opportunities.
4.Psychosocial Support to both the Parents and affected Children. This was mainly done by Hope for Humans social workers.
5.Public education about the Nodding Syndrome which is largely of unknown condition to minimize segregation of the families of the affected children,
6, Several formal reports and proposals on sustainability plans have been submitted to Office of the Prime Minister and other line Ministries. For the last 5 days the MoH under guidance of CPM, is closely and jointly working with the DHOs to fine-tune an emergency response plan on Nodding Syndrome.
ACHIEVEM E NTS
1. Thity two of these children have gone back to formal schools with four girls who got vocational training at St.Monica School, Gulu.
2.Through Office of Prime Minister an assoftment of food items, blanket, Twenty seven Cattles (under the re stocking programme) to the affected families and sewing machines have been provided to Nodding Syndrome Program.
3. Strateglc plans have been cieveloped and submitted to Office of Prime Minister (oPM).
CHALLENGES
1. The premature clcsure of the Hope for Humans Care Centre following the withdrawal of support by the key funder,Dr.Suzzane Gazda from USA has led to poor management of the severe cases. Reports shorv that two (2) deaths have occurred with more cases relapsing in the communities.
2. Inadequate funding which to support the District. Since the inception of Omoro District, We have received operational funds only once (about shs.12M) and have duiy and fully accounted for to the Ministry. t
3. No Amburance to transport the very sick chirdren is a chailenge. 4'From the lessons learned in the management of these cases, it has medication plus been seen that the nutritional component plays great a role in the management and recovery of the clients support in terms ' of food and other nutritional supplements have been minimal to this program. 5'lnadequate special Knowledge of the teachers to handle the cases who have returned to formal school. = +)-^brR\,r^n)- d- q;e-orrr n 1' central Government should urgently mobilize funds to support immediate re-opening of the treatment centre to save lives of the severe clients. A budget of 20 million per month to support operational cost apart from medicines and medical proposed, supplies has been 2' Ministry of health should disburse funds regularly and prompgy and to support outreach other operations costs to Nodding syndrome program. 3' secure some oxen plough and and other appropriate sources livelihood of a more sustainable to the Nodding Syndrome households 4' The centre should be transformed into an Integrated speciat Needs Education with medical wing centre with budget support to sustain it. we pray for your quick and necessarry action to save lives, restore aveft further death and dignity of our suffering Nodding clients and survivors as well as enhance their livelihood . DI$T RIC e P $0il * Okello Douglas peter, Lo CAL GOvERN ENT DISTRICT CHAIRPE RSON/DISTRICT NODDING SYNDROME TASKFORCE Copied to: Rt' Hon' Deputy Speaker of Parliament/ Member of parliament, Hon. Members parriament, Omoro of Serect committee of parriament Resident District Commissioner, Omoro Chief Administrative Officer, Omoro District Health Officer, Omoro 1 \ '(.) sF \. \J -' PADER DISTRICT LOCAL GOVERNMENT #F;s 6ffi$ Telegram: DISTRICT HEALTH OFFICE E-m aii: paderd i strictl ocal gove rn m ent(Ogm ai1. com P. O. BOX I Our Ref: PADER Your Ref Date'. 21.t March 2018 I Comprehensi ve Report on Nodding Syndrome Situation in the District 2OL7 ;\\ \,Lrur,6"-;+/ l-a-L Background j !r[.1 ]-aut f cases. i Nodding syndrome \ /as launched on the 26th May 2OL2 by H.E the President of Uganda in Angagura primary school. The task force for the district also started vigorous rvork fori nodding syndrome.with the focal person based at the district head-quarter in DHOs' office. Task force team for Nodding Syndrome The district havei a active task force members that sits every months though their sitting *..",interrupted due to political seasons that we went through iri I the last financia[ year. The task force is chaired by district chairman. The t members sat onljr once last financial year 2017-2O18, minutes available. This is due to over corhmitment of the district chairperson in the new office. 1 I Human resource and infrastructures for nodding syndrome Number of healdh staff were trained on nodding syndrome management and are in the following treatment centers; Awere, Atanga, Laguti, Lapul, Angagura, furinga and Kitak HC IIIs and Angole, Lagile, Bolo, Lapulocwida, A$wa ranch, Amilobo, Paibwor and Wipolo HC IIs' Total of 55 I more heaith *o.i...s were trained on nodding syndrome in the last budget sent on 17th June 2OL6. Find the list in the Annex 2. The trend in patient's Performance Generally, majority of the registered patients (2247 (M 1257, F 990)) have improved greatly in the recent years. However, some fractions are not doing well and they negd fulltime support from their families. i More than halve lof these patients are epileptic 1391 (M 764, F 627\. Those that fbatures of both nodding and epilepsy are 321 (M 185, F 136) presented with 't and Nodding Syndrome alone are 535 (M 308, F 227). Approximately 1850 of these entire patients both male and female in 2:l proportion have fully recovered to a level of being self reliance (they need iittle or no additional support for their d.ay today activities from their families), some are in schools while others arelstable at home. About 22O patients in 2:1 (M:F) proportion need their family' support in handling some of their day to day cores i.e. giving them medication, putting food in front of them as well as bathing, while about 177 are total depbndant to the family support because they cannot do anything on their own. All,these patients are on fulltime medication. i Recently we rea[ized that patients who were once presented with nodding syndrome are presenting with clear epiieptic features (recurrent seizures or fits charactertzed. byjacking and lost of consciousness) number estimated as 557 patients (M 371, F 186). These are the patients that are experiencing burns and drowning in, water most of the time. Some patients have registered drug failure hence their conditions failed to improve and they are the minority (I77), Note: 2 1. In the affedted homes where there is epilepsy you definitely get nodding "yrrd.o.rr..t 2. Since o.r, ilo.rrrectin coverage increased to above gO ohin April 2015, we have not registered new nodding syndrome case. The last case was registered on the 15n March 2015. 3. The numbdr of children that have improved and in school are not well established / 4. Active surveillance is going on daily. \<_' 6' Financial Suppol', Pader district recpived fund Ugx: 45,500,000/= (Forty five million, five hundred thousand onty) ofi the 17ft of Sept 2075.The fund was meant for 1st quarter FY 2OI5l 2016. The fund was used profitably in validating the numbers of the affected children and the household and repair of the grounded vehicles and motor cycle for nodding syndrome program. Since the automobiles had taken long without seryice, the cost of their service was high as a lot of things including tyres needed new one. Another fund was thcn released for nodding syndrome on the 17th June 2016 meant for that quarter (April, May and June 2016) total to USp 35,934,5OO1--. However we spent the funi in the first and second quarter of FY 2016/ 2017. All this funds were fully accounted for as required I I Consumables i i Drugs and supplies for nodding syndrome program are in the following facilities in the district; Awere, Atanga, Laguti, Lapul, Angagura, puranga and Kilak HC IIIs and Angole, Lagile, Bolo, Lapulocwida, Aswa ranch, Amilobo, Paibwor and Wipolo HC IIs. These conpumables stocks are at varying levels at these facilities and since their stock levels keep changing everyday, their record is not included in this report. I Outreaches progrhms, static treatment, follow-up, admission and referrals are some of the actiyities and services implemented under nodding syndrome. There used to be lood supply from OPM (Office of the Prime Minister) where the 3 -'4'" j',:r-! @F frl iI ir last supply was received in November 2O13 total of 50 bags X 100 kg beans rli of -1, t and 100 bags X 1100 kg of maize flour However, we received again on26th July 2017 relief food quantified as 200 bags of 50 kg of rice, p0 boxes of fortified food, 50 bags of 100 kg of rnaize flour and 30 bags of 100 i kgs of beans. It was distributed to nodding synd.rome and epileptic familie F in the affected sub counties. The distribution of the food started on the L Sth, 26th and 27h August 2077. The following sub counties i benefited; Acholibur, Atanga, Laguti, Awere and Angagura while Lapul, pader and Puranga. Challenges , overwhelm with the health center cores. I room for inaccuracy in data. i unclear fafhers causing more burdens to already burdened households. Some are i facing peer influence hence not willing to continue with medication resulting to escaiaded seizure attack and death. misguiding the initial nodding syndrome program and idea. improving; however they were admitted in the rehabilitation centre base in Omoro district (Annex 1). I activities rate have reduced greatly. (ectivities such as out-reaches, up i fottow of lost q.mong to foltowt- others). Admitted bhildren at rehabilitation center in Omoro district were I dischargedihome due to funding challenges, and these children condition might regress if no care is given. 4 i I Proposed Way forward i 'I Trained all[staff on nodding syndrome to reduce workload District should include nodding syndrome in the District Development Plan to aliow district full participation and ownership materially and financially. There is urgent need to ascertain the numbers of the children that have recovered f3irly well and in school, those that are at home and those that I have challenges in their day today lives to give fair planning figure and allocation of resources. There is need to conduct need assessment to this affected household to allow development of the targeted program for the family. (suraeg as just stqrted to qfcertqin this) I There is nged to d.evelop a separate program for epileptic patients sincg their numbers overshoots that of nodding syndrome. This shall allow for I a fare buddetY for nodding syndrome that is accommodative. There is need to develop holistic care for worse affected children to rehabilitat{ them in the effort to improve their condition. In this regard we need rehabilitation center constructed in Pader since it has the highest number of patients. t 1; I l : J { Api na // Ag \, :t t Pader zr HA,r;rirg dr ffi p;:.R D I STR] C'T LI.I;A t.' 6c)\TT' I t 5 +fi#f+s4rr , [. .'i} r ' *r G't,' i jl"r, Annex 1 Human Odek' List of Children hro* Pader that were Admitted at Hope for omoro District L7 Jan 2oL7 and discharged or 29th Dec 2oL7 I I Alanyo VickY Amony VickY, 17 Yrs, AY'rvert, Alice. 13 yrs, Langole B, Bc5lo, Pucota, AlanYo Ajok Agnes, Labwot SaraPina (Min oding) Angagura Sub CountY 17 yrs,Paikat Akidi, Angole, Awere Sub CountY Odong Nickson. Awere Sub Coun ,{ Akanyo Paikat Vicky, 16 Yrs Paikat Akidi, Akello Brenda, 14 Yrs, Akello Nancy 12 old AYom Nickson Yrs Angole, Kibalo Kenneth. Awere akidi, Angole, Odong Central, Bolo, Onono James. Sub County Awere S/C Awere Sub Coun Atimango Obic, Larvino Margret, 15 Yrs Grace Juklebi West, Bolo, A,dio BettY. Angole 19 yrs, Aremo Alice, Juklebi t George. Awere Sub Awere Sub CountY Okot West, Bolo. Awere Sub Count County Ocungikuma Odong,Moris, 16 Charles, 19 Yrs Juklebi Central, Bo1o, Okello James Awere Sub CountY. 6 o I s, 15 yrs, AYom o d, 17 yrs ,l o D ,l yrs, Langole Central, Bolo. Ogaba Santo Ayweri, Pucota, Abalo Grace B, Bolo, Odoch James' Awere (NS) S/C. (NS+) Awere S/C. Angagura S/C (NS) Apiyo NancY lo Sarah, 15 Yrs, Avom Okot David 18 years, AYom, Bolo, Akello central, Bolo, OPiYo John 17yrs, LaPulocwida, Oqatte, Scovia. Awere S/C (EpilepsY) Awere S/C (NS) Rptto Hellen. Atanga S/C' (Ns+1 , .h' Aj o n ca I 6 yrs Bolo Nyeko Patrick, 15 Yrs, Langole 17 yrs, Juklebi agweng Ojok CharIe Mackey B, Bolo, SaraPina Labwot central, Bolo, ocitti PhiliPs Awere S/C (Min Oding) Awere S/C (NS+1 Awere S/C (NS) t ll i .) i 7 't l i { i ar -f) l' Annex 3 I Nodding Syndrome Data Up to July 2OL7 I[odding_ Nodding + Epilepsy Total F M F M F M t45 133 432 An 34 30 56 34 8 J 1B 0 1 5 I I 5 1 138 492 Atan 29 21 82 7t 10 4 2l ol- 0 6 I 103 292 23 14 26 22 104 ti I q 0 I 0 0 0 277 195 833 Awere zds 153 0 0 0 9 5 3 0 0 1 17 77 Lapul 6 6 l4 6 28 0 0 0 0 0 0 0 2 2t B 40 Pader (Kilak) 2 1 6 0 2 0 0 1 0 1 20 39 Puran 5 2 0 0 12 0 0 0 0 0 0 0 26 13 42 Acolibur 1 o 1 1 1 0 0 0 0 0 1 627 2247 Alive Total 3q8 227 185 136 764 I .) 8 52 Total Death 5 4 13 20 odding SummarY e Total M F M F 493 363 764 627 2247 I l i t I 8 \ , Prrdcr DLG Notlding Sl,ndrorrrc Iiund rvorth tlgx 40,562,000/: (Fourty nrillion livc ltundrc Vchrclc/ SN I Fr,,,il Allo."l'on Allou'lncc/ Frrtl NIotor cvcle Scrvc. I 2,592.000 2 592 000 264,000 264 000 Fuel r 680 000 Vehrcle Serurccs/ Tvrcs 2 500.000 2 500 000 7,O36,000 250 000 250.000 Fucl 150.000 3 50.000 600 0rxl 3 riln' o.n.w Rn.D^',d 250.000 250 000 Frrel 3 50.000 r50 000 Strh Tolal 600.000 4 I 51 000 I 53.000 300 000 300.000 I 00.000 100.000 roo 000 I OO OOn Statronarv 50 000 50.000 701.000 5 tlorrr visit to rvorsclv rff?clcd ch'l(l'cn Allorvanccs R50 000 850 000 875 000 875.000 S'rh Torrl 1.725.000 6 SuDDor I lo \/tlTs 6 000.000 6.000.000 l.unch Allowance 1 000 000 I OOO OOO All^w,o..( D'srr,.r Offi .,,1( I 44 000 I 44.000 Frrel Drstrrcr Ofiicr.rls 280.000 2E0.000 Srh Tot.rl 9,42..000 1 Sur!ror I to Pr obrlroil Offic. I 728 000 l.?28.000 Fuel for vehrcle/ Motorbrke 960.000 960 000 Slatrooary 240.000 240 000 2.928.000 t Di\tIcl Coor rlitr.rlror Omce 50 000 50 000 288.000 288.000 Fuel l.050,000 I 050 000 ? 50 000 250 000 50 000 50.000 Sub Tolil I (tt nno 9 Silnlrrn.illIa fr.d'ilo Fcedrnp olreverelv n,alnounsh chrldren 2.900.000 2.900.000 tfl e^^',1,',rti^" . n'fF Pol'l'.rl illonrlo'rilo L60 00d I 760 000 264 000 264 000 r 416 000 | .4 I 6.000 Sub Totnl 2.9{0.000 h L260.000 I.:60.000 ) 64 000 164 000 Frel I 4t6000 I 416000 SIb Tot^l 2,9.10,000 940.000 940.000 ?6r' 000 764 000 Fuel I I04 000 I r04 000 Suh Torrl 2.108-000 ,l Coor (l,rrrlrotr IlTrclrnos 450.000 d 50 000 900 000 900 000 ShtronaN 3.420.000 3 420 000 SIb Totrl d 770 000 40.562.000 29.S52.000 s90.000 2.500 000 4.250.000 3.670-000 I -ffia. l'z\l)l,ltt l)lS'l'lllCT LOCAL GO\/EII.NMENT w0 I( I'I,AN II0I{ NODI)ING SYNDROME OUTREACH 20IIt ?ffi Dltc of Budgct Outrcrch Sub C [r nt], ()rrlle:rch Si(c SN l'cam I Fucl Fucl Allowances (SDA) Total (Litres) Ila tc Total A\\/EI{E I I ]oloirttra,crr t 3 onle x 17.000 x I 5 1.000 l0 5000 50.000 Ilol r rl,trvcr r,l 3 rrple x 17.000 x I 51.000 10 5000 50,000 Ilol txr nrvcn u 3 pple x 17,000 x I 5 r.000 IO s000 50.000 r 53,000 1s0,000 LAPUL I(ovo litlour I)S 3 pplcx 17.000x1 I 53.000 5 5000 2s.000 Lrrliorrrc'l'(' 3nplex 17.000x3 l 53.000 7 5000 3 5,000 306.000 60.000 ATANGA I'urrrrrii l'S 5 pplex 17.000x I 8s.000 20 3400 63.000 I.acor 5 oole x 17.000 x I 85,000 20 3400 68,000 Wral AruLr Fall PS 3 nple x 17.000 x I s r,000 I5 3400 5 1.000 Burlobo 3 pple x 17,000 x I 5 r.000 20 3400 68,000 Aruu Fall PS 3 pple x 17,000 x I 51.000 r5 3400 51.000 Burlobo 3 pple x 17,000 x I s r.000 20 3400 (r8,000 Aruu Fall PS 3nplexl7.000xl 5 r,000 l5 3400 51.000 Burlobo 3 pnlc x 17.000 x I 5 r,000 20 3400 68.000 306.000 357,000 LACU'TI c La ierrg 5pplexl7.000xl 8 5,000 20 34()0 68.000 pple Acutomer 5 x 17.000 x I 8 5.000 25 3400 85.000 La pple teng 5 x 17.000 x I 8 s,000 20 14 00 (r 8.000 Acutonrer 5 onle x 17.000 x I 85.000 25 3400 85,000 pple Lateng 5 x 17.000 x I 85,000 20 3400 68.000 Actrtorner 5 pple x 17,000 I x 8s.000 25 34 00 8 s.000 5 l 0.000 4 59,000 r pple KILAK Orrqany 3 x 17.000 x 3 I 53.000 30 5000 150,0(xt I 2, I 93,000 I,536,(X)0 I Total allorvances = 2,193,000/: Total Fuel = I,536,000/= Distant in l N @ ! o o @ 6 { o o @ @ ! o o @ o o @ ! o I Ut U o A \] \] N o\ o @ z o I o o 7 > P o o o o o o fr 2( o tr i' { z a E' o E' o o o o o o O o 4Z rd o p 9 o E 6 x F o. x o r 7i i' o o r o o x (, I I 7i o o- 9 I l, D' 3 x o o 7l D o o o o o ,l o o a) o r D D o o D ,( F o o I 5 o ! o p n G o o o N o ,q ,a A) o o x p I )f p D .J N = tr o N o N t. n o U) il D n CN a U) n o C- F (- o= ID 5 ID >: o U) ID ID F a a a a x a g a o o A) iH a I N c0 p o o l) + @ ID o o a o U) "o E' o a g t' fr () o o o 'o p B P p TD ao 5 tr 5 o tD o o A) o A) A' x a n) o A' 4 I o n p 3 o o o o o o o 0) o. e o 6- a o o I o F) h 6 o o it o c0 o A) o A) o o D 5. 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F D E' F - s rc t I o !, t 5 o I I r D r : o a r d C' I o ID o N ,a ID ID o o o 1 g x A) ID o o I rc t o o o o n tr- ,q o ID o ID rc o o p !) q) o p D' n E t $ o o I 5 E o Ia ,e o !, I ID o o o 5 p n 5 ,c o x ,a rc t0 n o o o 3 D 5 a I o G o o o o o o ,a o o @ o o l0 I o 6 s. t & o g. 0) o o z p o. o o o !, D p o F .0 o Fl. c0 t0 c0 ! z @ @ z x rD p € 0) s z z o x X tr z o o o ! x TD cd z z z w CD iu o E ,e o ,a 0) E' ,a n ! p) o o z X z z T ID o h o o )! I o o o n n n o !, L F n t, a a o 3 D ,q q) !) A) o x o o o o I tr r} 7 v o o o o p o 0) o o D 0) o o o o ( a E F n 8 8 o 5 o 8 o o x o 6 d o o s o o o 6 6 l, d o s o o 5. o o o o o 5 o t) t) J- 6' o A' $ d It ,a 5 o 0) o o o o 5 o o o o o o F{, 0) A) o, -0 a L q"o oo rc g I I D F ID E p E' D r ,. 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N Ito u o o o N Ol + { UI UI Or 5 A Ul (! + $ lu co (, $ N 5 o) (/l (.) \o \] n o o o @ A co cr1 H o ,a o o fl K 1' 11 a, 3 t1 \) iq ij j1 .4 n o x N (- rJ o o C- a, o L q) 2 Fr s N N N N N N) o o N p o o d N N N N N N N N e3' o o O o o o o N \) o o o o o o o o dL N { o co + + \o CX oo P- { \] o { N N o O r+ o o o o o o @ o q 6 o o o o o o o @ @ @ o a o U Dr o o A rt o o 6 G o o G A @ @ q o o o 6 o o a @ o @ a o E ,q !E' o o o o o o o a a o o o o o E o N N O O O (, (! \) (, ur N N N N \o o\ o) + N (n @ N \l N N N @ N N N (, N \| ? -.1 Co o N + -{ N \o o\ (n -.1 (n (- z o \o co + co N (n U N D N N) N N t\) N N N o @ n N l\) N N N) N N l\) N N N) to N N N N N N) N N F' t\) N N N i\J o =D o A) UF 3 o o o o o o o o o o R N N o N Be U1 (rl (n U1 UI (.rl ul (n (,,l go I A s s + + 5 $ A s + A $ + 5 + A + A + + O (! (! U) (j (! (, (, (j (, c! N \) N N N N C a :E t, C a c a C C a o a a q o @ a U) g o o, D o t o o 3 c C C c c C C o P- s' s tr o s g s A) ! F' 5 o !) 5 !) p r o 7i D o a u s o E a) a I o x o x lD @ 2r ,r 7f x x )f x 2r t ! n 5 a o 4 ID o @ A) x x I r x o o c a o c o o o o o o I I 5 j D D o o o o o o o o o o I f, c, A' I t (5 N A) D f, 5 f. I t) { 1 tt a I 1 0, { { o R. t U f 6 tr j u J { j t { o o o o o J =o o a o { u z t, D o A' € o ID A) E A) o c d o FJ o ) o o I o o o I r i @ o o o o o o o () o .) c) o o o o o o o o o o o o o o o o o o o o o o o o o o o o o c) > o o o o o o o o o o o o o o o o o 5 s o o o !, o o o o o o o o o o o o o o o o o o o o o o o o E ts I E :, 5 ts 6' 5 I 3 I I 3 3 a E E 3 5 ts 3 ts 3 ,a 5 5 I f ID E ts s n 5 & 5 tr L a L tr I 3 3 D E E E I 3 E UF L L I E tr + a (J E a [[ x I 7. q, 1. o ; o i ? i a_ c, 1. E 2" oq = 2 { c s ,\ @ ! ! ! ! ! ! o { 6 o o o o 6 @ @ o 6 o A or N l\) (, \o ul o o ll 6 $ (! tqtl lo lJ x P € x o p o r !) o r lB l: o x ot c0 p ls l 0) U a p o 0) o !, c. o a o € A' z a oz o a s. ,! t) o o o o o D o o 6 A' rD x o o ID= I 0 o N tI o 2f x E G o F o - td a U 6 9) A' o 0) q o ID a. o. o o o o 6 E E' ! o o E' tr U ID o A) r t' o A) o o o )l w F w o o{ { { I o o o o o ffi I'F ql N cll N N \o N (, { 5 (, $ @ \o CJ (n o o\ (r ol o @ o o o o 6 I'l= o ? 3 z ? T' l=l- =, ? 3 3 = * * N o + :1 + N) N N) N N N P + o o + * N o o o I * N { 5 o) { ro N ..t ..1 e * o * co o\ ..1 o o o o o o o 6 @ o o o o o o o o o o o o @ o o o o o o 5 o \l u N N N N \o \o L \l tu J ,a t\) l\) to t\) o o N N lo N 6 ! \t o\ o o o o o o o\ Ul CN (,l (,l o o U\ o ol (/1 o o (,| (I| (n U a CA Or !, 5 G o a C !, A) 5 1 o ts f, d D s' ox o x. I ( E E { { 6 o 0) D D o 6 t I o lo o lo o o lr u IE I I t- ffi CARITAS GULU (SOCIAL SERVICES N4 AND DEVELOPMENT) GULU ARCHDIOCES] ( AN P O. Box 389, GULU - UGANDA ffi T el. +25 6 (0) 7 72 309607 7 04 309607 Fax. 047 I 32744 Introduction CARITAS Gulu Archdiocese is the Emergency Relief and Development arm of the Catholic Church in the Archdiocese of Gulu. It is a commission with a pastoral obligation to offer charity and hope to the most disadvantaged members of society. CARITAS Gulu has branch offlrces in Kitgum and Pader Districts; but also intervenes in the districts of Amuru, Lamwo, Omoro, Nwoya and Agago. Caritas Gulu has been in operation for over 25 years since its founding as the Social Services Department of the diocese. Through the Church network and structures, As a Faith Based organization, Caritas Gulu has become one of the largest local charities in the region and owes its strength to the personality of its head, the Archbishop of Gulu Archdiocese, and the team of dedicated stafl all working within a well-developed programme implementation structure. Caritas Gulu Archdiocese is a legal entity with the Archbishop at its head supported by the Board of Directors (BOD) and managed by the Director and the Senior Management Team. Our Vision :A peaceful and prosperous society where self-reliance, love and care for the vulnerable prevail. Our Mission: To promote peace, social justice, and integrated development in line with Christian values. Our Mandate CARITAS Gulu as a commission within the Catholic Church has the mandate to: . Provide social services through the social Services Department . Support development efforts through the development and Livelihoods Department . Offer relief and rehabilitation services through the Emergency and Relief Department to the most vulnerable people in target communities, for holistic and sustainable integral development of the human person. : '" - .1," ,i .i ^ l l March 26,2018 Page 2 Social Services Department: The social services department at Caritas Gulu Archdiocese intervenes in social protection especially for the most vulnerable categories of members of the community. Currently, we work with older persons to ensure that their rights are protected; the women through women empowefinent to reduce on Gender Based Violence and the children to Child rights protection. For the purpose of this report, we shall present the situation, challenges and recommendation on the child protection project with specific note on children affected by Nodding Syndrome: Caritas Intervention on Households and Children affected by Nodding Syndrome: In 2013, Caritas Gulu piloted a project to support households and children affected by Nodding Syndrome. The pilot phase was in Paibwo and Lapyem Parishes in Laguti Sub County, Burlobo parish in Angagura Sub County and bolo Parish is Awere sub County. ( Most affected areas). From 2014 to 2015 Caritas implemented a project: INTEGRATED SUPPORT TO MITIGATE THE SUFFERING OF 600 HOUSEHOLDS AFFECTED BY NODDING SYNDROME IN NORTHERN UGANDA. The Project Goal was to contribute to the mitigation of the suffering caused by the Nodding Syndrome to the communities in Acholi Sub region. The purpose of the project was to Contribute to improved living condition of households affected by the Nodding Syndrome We planned to establish and strengthen the Social support structures within the communities so that they develop mechanisms to respond to the NS epidemics on their own. From 2016 to date, we shifted the focus of our intervention to target not only children with Nodding Syndrome but, every vulnerable child in all the 9 parishes of Atanga and Awere Sub counties. Achievements (2013 -2015): o With the different activities implemented, there has been a remarkable increase in community knowledge on Nodding Syndrome and Management of the children affected by the Nodding Syndrome. . Reduced level of stigma and myths about the NS that was disintegrating most of the families. o Community social support systems and structures were created and strengthened to support households affected by the NS. o We profiled over 1,000 households with over 2,000 children affected by Nodding Syndrome in the areas ofour operations. March 26, 2018 Page 3 o Through the over 30 Village Savings and Lending Associations (VSLA) groups that were formed, trained and supported with capitals, majority of the households experienced improvement in household income through engaging in savings and investment in petty businesses and purchase of domestic animals for the families. o We were also able to reawaken the district Nodding syndrome Task force and support the medical personnel in carrying out outreaches and awareness creation on Nodding Syndrome. Good Practices, Challenges and Recommendation: Drawing from our years of experience in working with children affected by Nodding Syndrome; 1. We recommend Government to recruit, train and adequately support the health workers in terms of good remuneration and transport means at the different Health centers in the sub counties (Angagura, Atanga, Laguti, Awere and Lapul) affected by the NS in Pader District for us to meaningfully mitigate the suffering of the children and their caretakers. With regular and constant drug supplies for the children, we observed reduction in the number of seizures attacks that they normally go through compared to when they are not taking their medication. There is need for the Government therefore to ensure constant and continuous supply of drugs for the children to the different health unit points. Important to note is that, the drugs need to be availed at the nearest Health Units in the different parishes to make it easily accessible by the children. 2. We appeal to the government to deploy a chief magistrate in Pader to help prosecute defilers and that will help to deter those other men harboring evil thoughts against these children in the community.With the absence of a chief magistrate in Pader, defilers have gone on rampage with impunity. For the last two years alone, we have received over 100 cases of defilement for girls affected by NS. On average, we received 6 cases every month from the sub counties we are working in. Only 4 cases have been able to been conclusively prosecuted (pepertrators convicted). The rest are either still under investigation, suspects are at large or, the complainant have lost interest in the case. The biggest and most frustrating concern here is the absence of a sitting chief magistrate in Pader. Although the district has been granted a magisterial area, Pader still relies on the magistrate from Kitgum who serves; Kitgum, Lamwo, Pader and Agago districts. As a result, many of that, many of the suspects and perpetrators are out on bail a concept which the local man and woman on the ground does not understand very easily and these criminals take such advantage to make the community believe that they are untouchable, they can defile any girl child and nothing will be done to them. And as a result, communities are getting discouraged from reporting defilement cases on the I March 26,2018 Page 4 ground that, even if they report, nothing will be done to the suspects. Instead they resort to negotiation and getting pays and compensation from the families of the perpetrators as low as 100,000 (hundred thousand shillings) or a goat to which they say is better than nothing. 3. We recommend that, the government should open up more police outposts, deploy and equippe up police outposts in some of the remote parishes to help curb down on the crimes (Bolo in Awere, Lapul Ocwida in Atanga Lapyem in Laguti and Burlobo in Angagura Sub counties). The police are ill equipped and in adequately supported in terms of means of transport to effect arrest, and carry out investigation, fuel and money for stationery. This has also affected the quality of the investigation reports they submit to the state attorney for prosecution. 4. Government should provide a direct support to the households affected by the Nodding Syndrome. This can be done as individual households or in groups of about 5 members per group. And these has to be support that economically empowers the households and uplights their means of livelihoods. The govemment suggestion of supply of blankets, mattress and food stuff has never worked before and will not work for various reasons. These support are not sustainable and sinks our people deeper in to the bottomless pit of dependency syndrome and to remain beggars, a disease that needs to be fought and eradicated. 5. Government needs to strengthen and support the Child Protection Committees (CPC)/ Parasocial workers (PSW) and the Village Health Teams (VHT) who are the unsung heroes at the fore front fighting for the rights and welfare of these neglected children. 6. We recommend that government constructs and equip rehabilitation centers in each of the affected sub counties of Angagura, Atanga, Lapula, Laguti and Awere. Experience has also shown that once these children are properly taken care of in terms of feeding, medication and other therapeutic activities, their condition improves faster. And this can best be done when they are at a rehabilitation center managed by professionals and well-motivated personnel. 7. And lastly As a development arm of the Catholic Church, Caritas needs to be supported by the Government and donors so as to continue supporting the households and children affected by the Nodding syndrome . Conclusively, Nodding Syndrome is real with a very devastating soci-economic impact on the affected communities in Northern Uganda. It has received the least attention from the government compared to Government response to some of health related problems in the other parts of the March 26, 2018 Page 5 country. Research have been carried out with no clear cause and treatment on sight. And this makes management of the conditions the only available means to alleviate the sufferings. We feel sad when some government officials make reckless statements on the suffereing of these innocent children and above all when the money that should have benefitted the families and children and misused! Whereas the medical personel continue with the research, appropriate action needs to be taken to support the households in the management of these cases. It will be unfare to conclude this report without recognizing the fincial support we get from Caritas Germany and the Germany Government for the child protection project. On behalf of the children, we are very appreciative to the German people. Compiled By: Okello David Programe Manager/ Branch Adminsitrator Caritas Gulu Archdiocese Tel:0772883074 / @ @ ! 6 p N o ! o o @ @ ! o 6 ! 6 o @ @ ! 6 \ ql N o ! { N o o\ o 6 + z o > z t x o o r''l> o o O o N X r o 5 E' 9 { o F o P E' X a o _o O o o o o o o o o 12 o ,i o o o h 7l 6 ,( r !) o o r x o E' d 1' e )o I E E o o x o o o o G o tr o )l p x a) o E p q) 9) rc ID x x o o o o g p) n o o o o )q =p ,r o cr 5 o x p)t F o 7i p ,l rD a D @ ID ,c o o D) A) E o ; pa E lD 5 { 0) U x o o a U) pa 0) a p il a a F ,f (- a g U) o !) s o t N E a n o o a o !o a o o U o a o N 'o s' fH N o F o A' o o o 'E A) 3 x P a p ao o I E F) 3 o , N D a L N o 9) o @ o o o N t, A' o o p F o o U I s s. o 6 I o o -t E a 0) ,( o A) o rJ p !) 5 o il o f,' o o p e * U o 0) o o o I, I o N o a o = o E a x a I r o P o. o E" z o o o ? o o x o o o o (-,) o c o o o I r ! o E' a a o E' E' F a E' O P o c, n o { o G o r o D ? o. lJ o n F F 7r r o t o o E' 7i g o il x I 3 1 o o o tr D o o o 5 ID p o o c G o 4 F p D D) o o p "t) o 4 a ID o o ,a o D o 6 u, I a I D D I d o o= ID o ,a o p z o p p C. o ^. p F' c I ,q n a o o C) a t0 r- o D o o o N N D A) o iD I n c) I AJ 5 a U) p FJ ! i 3 o o o D f p o 4 6 o o 5 A) s E 5 o o o o B ) a L il D F o I o I I 1 3 I I 4 I D o s o (- (- s o ,a o o 5 3 o o (- = o o n o h 2i r o o o : p p t. e o o :0 @ -l 6 - EO o > TD -l o L @ c! 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E x E' o lo lo D b ( o (- o l3 l3 o a (- a o sx p D o o i"t o o s >lrlL dlo lc 6 E' a RIgIE g r o o ID x ;lo ig o G o Ill; to o{ G I la o o x l> IED c0 c0 EO tr ,a o o fq 5" o o o 6 o s G { { { o o o o{ e I ; o ; 6 p o N t\) (,rr N Ul (/) (! { 5 5 s @ \o (n q N \o o o C, o \o o O ? z 3 i, 3 3 r, ? -t) = = = * * +* N tl N N) N N \) t o N N N { + (n o + o o o \o -.1 o o o * co I + o\ .\] -{ o o @ o o o 6 @ a o o o a o o o @ o b o o 0 o o' o o o o o o ll' @ { N N o (! \o { \] o \o o 6 f ,a N N t\) N L o o o N N N N) @ ..1 o o o\ o ol (, Cl Ol ql (/| Ul (,l a (, (n tj UI (n U) o a^ cn 0) o a o o ,i 6' f o no -l o { 9. p d { o B o { I o { D ii A) o I 5 o A) o oto o o lo lo o o I 3ll l9 o 3 ; lt I clc ti E 3 5 13 l5 c l,e o t' t. ffiF o N) \o oo { o\ (Jr 5 lJ) NJ \o 6 { o\ (Jr s UJ NJ ls's o - - FU X ri X L FU Lr X -l Lf ? \z o ln ln o tn o X o a \ EU X n F n X o Frt z o o z - - z rr o z r< (, t- o - o N 7 U) o o lr'J o Lr l-r z o e rn o C o (nln o -l td FO Lr o a X - ED C z z F -J X z F o X o Ir] ln o - t- z rn o z o z - ED o a o 6 ln F ln LlJ 2 2 2 F a ln ln F ln ln - a l.l NJ N) { o\ \ { { { Lh o\ { @ N.) \) Ul o\ o\ (Jr { m { { o 4 rq o q< L{ O li,/ - - - O - - - - N F o L ED -l -l -l F X X 7( F X *l o o o -l -l l.r rn F t- t- ar ? E] L I,J o o - - 7 z 7 F fr FEI x u] rn t 1.i rn E] ln o -l -l I F - ED EO EE EE - o EU @ r! z rt r. rn o o F 3 a rn rd ln LIJ ln rn E1 ln a (A ll -l (n z (n (r) z a i -l -.1 -l -J -l -l N F -l z - - U z lil EE ED ED ED E! ED ED EU EU ED E! ED ED ED IJ o z o o o o z z z N a - - - o l- - rr - t- t- rr l-. - t- - - - o t o o o o o o o o o q!.( z - l- - ln rn- ln ln E F ?o = oN) NJ N) N) N) N) t9 NJ t9 tJ NJ N oNJ N) N) NJ N) NJ NJ N) H o\ \) ! ! o\ \) o\ oo o\ Ulr UA F { { { { { { { { 5I l! N) b '^l o - (.,r t! a o qo z il ? ItJ o F r! t5 ED n o Lr ln r< h EU N IJ n X U X z z tn F o o z EJ ? trJ F o Lrl rIJ F I -l r< rr o F o -.1 F z rr X E o ln z f- E! ts z z Lr o - q.r EE ? o I q.,r \) o E1 ln ED ln ln ? 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FO Ftr FU EE n 7{ X n X o FO rn rn o rn ln o F X X o z - - z - rr- o -l o o o z oz - - - (A (u F o o F a z a E! z F EU ln o o -l -l ln EE z ln rn rd - H z rn rn z rn z U) F z 7 (n s o F - o rr z o a o tn -J (r) o - f- t-l ri rrl El rn -l n n 7 F ln rr F - z w z o F - o 2 rn ln E] fjl t.) o\ { \) u) Lh { NJ (]) 5 (,Il (rt (,l { { o\ { o\ { o\ s { i i - - FU FO li - - - - Lr Lr o n X -l z X z -rl X -.1 -.1 7 o n o -l -l -l n o o X X r< o r. - o 2 2 2 z - 7 A X X o o -l rr -l lI] E] - rn ln Fir FTi rn EU EE rn rn 14 ED o rn o (A X - o - (t) rn rn ln X ln a a rr z H LIJ -l .l rn ln -l z N z =(u F -J -l (A a F i -.1 -l *l -l -l F F o - r- ri N F ED EU Ed ED EU ED EU z z z z z z z z o o o z o o o - - r. - O o o o o - tr - - - X X X o o o o \J o o r. - - - rr l. t- - rr 1.i X X n rn rn E] E] rn ln LI] rn L N) NJ NJ N.) N) N) NJ N) NJ tJ oN) N) N) NJ N) N) tJ NJ N) N) NJ (/t s ! ! \) N) U) 5 o\ { { { { { o\ o\ \) { o\ { t- r< X o X Li X - X U X @ L F o o o o rn o E] X N EI rrl - X rr z z z t- l. -l z ln z z F z z - \ t- -l rr 7 Li - o o - +1 o EE E! r{ o ln a o o E] a O H o -J (A >Jr - o o (rJ o - rn o -l a rn Ltl tn Z -l o z -l o F F o o z - F E z -l a F -l - frl o -l ED i F F rn ln rJi 2 o i 2 z (Ao rn F o FI z o ln LTJ F o rn z- ln a 5 5 5 s u) N) \J X z n r.L 1.' o - 2 -J ts F vLll zrn 2 z rn s o\ o\ - - X - n X l. o i F o F - - - o lr,l - rr - F] L1J F] NJ N.) NJ \) { \) X EN ln l- -l z o- o EO -l z F X U) o o X z t THE PARLIAMENT OF UGANDA rEl Parliament House, P. O. Box 7178, Kampala, Uganda. Telephone: 0 41 4- 37 7 000 I 37 7 180 I 37 7 | 8l I 37 7 182 Facsimile: 0 41 4- 3 423 64 Plot Nos. 16 - 18 Parliament Avenue MffOFNE MIUC OFUilDA In any correspondence on this subject please quote No QUESTION GUIDE FOR THE COMMITTEE ON NODDING SYNDROME FAMILY AND CHILDREN 1. Estabiish the total number of children (disaggregated) and household affected by nodding syndrome? 2. What is the nature of the vulnerability of the children and the households? 3. Determine the level of physical, psychological, social protection and care of children affected by the nodding syndrome? 4. Any future hope of recovery (number of recovered and are at school and what is the performance at school)? 5. What kind of support should be given to the family to sustain the care and protection given to the children of nodding syndrome? 6. How useful was the NGOS intervention on the issue of nodding? 7. Comment about the issue of family based care and centre based care which ones would you recommend? B. What would you advise parliament to do? DISTRICT OFF'ICIALS Who is in charge of the nodding disease in your district here? Can you describe your work on a daily basis for the children affected by nodding? fl 111 How much money have you received so far from the central government for nodding disease intervention? 1V Can you show us the guideline given on how you should use the money? v How much money goes direct to the family of the children affected by nodding syndrome? v1 Do you feel the funding has been adequate? vl1 Have you had any challenges as far as drugs are concerned for the nodding syndrome? v111. Have the children been receiving medication as prescribed and timely? ix. Tell us about your outreach programmmes in terms of follow up children in the community? x. Do you have adequate logistics on issues of follow up? xi. Comment about the state and functionality of government centres established? xii. Comment about the issue of family based care and centre based care which ones would you recommend? xiii. What can parliament do to improve the situation of the nodding syndrome?