Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1694848090099.pdf (Uganda)
THE REPUBLIC OF UGANDA MINISTRY OF HEALTH TA P N NODDING SYNDROME IN NORTHERN UGANDA Hon.

Sarah Opendi Minister of state for Health - General Duties MARCH 14,2018 MINISTERIAL STATEMENT TO PARLIAMENT ON THE NODDING ROME IN NORTHERN UGANDA Rt.

Hon.

Speaker, Hon.

Members, During yesterday's sitting, Hon.


Franca Akello raised the issue of the children suffering from Nodding Syndrome and specifically to parliament's earlier recommendations on the same discussed last year following the report of the Committee on Gender, labour and social development.

I was therefore tasked to present a statement on the Nodding Syndrome that has affected communities in the districts of Kitgum, Pader and Omoro and Lamwo.

WHAT IS NODDING SYNDROME?


Nodding Syndrome is a severe neurological disorder that manifests as seizures, head nodding, cognitive impairment, multiple disabilities and affects children.

A child is said to have nodding syndrome if: 1.

The child develops involuntary drops of the head to the chest at a frequency of 5 to 20 times per minute on two or more occasions in a previously normal child 2.

Age of onset is between 3 and 18 years 3.


Has other neurological problems in addition to the above for example cognitive decline, behavioral problems or seizures or neurological abnormalities 4.

There may be stunting or wasting or severe malnutrition.

5.

Brain imaging shows varying degrees of brain damage ranging from mild moderate to severe.

These signs and symptoms can be identified and graded by a trained health worker.
o Many a time cases of epilepsy and other conditions that affect the nervous system- like febrile illnesses, inborn abnormalities or autism have been wrongly labelled as Nodding Syndrome.
Please allow me highlight a few differences; Epilepsy affects all ages, patients do not have head nodding, they exhibit moderate to severe disability and brain damage is not common, and sometimes may be inherited whereas Nodding Syndrome affects only children, is characterized by head nodding, seizures, moderate to severe disability, brain damage is common and cannot be inherited.
Following research, Nodding Syndrome has been characterized in five stages depending on the severity: Stage one presents with no significant disability, while stage two is charucterized by slight disability, but patients are able to look after themselves without assistance.

These form 21% of the cases in Northern Uganda.

Stage three and four are characterized by moderate to severe disability, varied cognitive function and children may require help with walking.
These form 74% of the cases in Northern Uganda.

Stage five which is the most severe stage presents with severe disability, and these are mostly bed ridden children.

They form 5o/o of the cases in Northern Uganda.

Rt.

Hon.

Speaker, I would also like to mention that in all stages, there is some degree of brain damage and this increases in magnitude depending on the stage.

All cases in stage 5 and a few in stage 4 require rehabilitation.
According to our statistics, as of December 2Ol7,Patients who fall in stage 5 are currently as follows; 8 cases in Kitgum, 20 cases in pader, 5 in Amuru, I in Lamwo and 20 in Omoro, giving a total of 59 cases.

Trained Specialists from Gulu Regional Referral Hospital have been following these cases in addition to regular visits by health workers from the affected districts.
Our technical team led by Dr. Opar Bernard and Dr. Richard Idro have continued to carry out surveillance with support from the district surveillance focal persons.

e THE BURDEN The burden of the Nodding Syndrome by District currently stands at; 806 in Pader, 544 in Kitgum 339 in Lamwo, 60 in Gulu and323 in Omoro, 58 in Amuru, and 13 in Lfua, making atotal of 2,143 cases to date.

The total number of deaths to date stands at 137.


Overall, there have been no deaths registered in Oyam, Lira and Gulu districts. '

Amuru district has registered 4 deaths which occurred between 2016 and 2017, ' Lamwo district has registered 10 deaths which occurred between 2012 and 2017 . '

Kitgum district has registered 33 deaths, most of which occurred between 2012 and 2014.

In 2015 Kitgum district lost 3 cases, 4 in 2016 and I in August 2017.
Kitgum General Hospital being a referral center, receives very ill patients who usually arrive in the late stages and severely ill. .

Omoro district registered 9 deaths between 2015 and 2017 . '

While Pader district has registered 81 deaths to date of which 6 were at health facility and the rest in the community.

(2012 - 6 deaths, 2013- 11 deaths, 2014- 23 deaths, 2015- 29 deaths, 2016- 9 deaths, 2017- 2 deaths and 2018 -1).

This current death occurred two weeks ago.


The patient had relatively improved but unfortunately he drowned in the river where he had gone to play.

The common causes of deaths are infections following severe burns, severe malnutrition, aspirations following continuous seizures (Status Epilepticus) and drowning when left unattended.
UPDATE ON RESPONSE TO NODDING SYNDROME IN NORTHERN UGANDA Government's intervention on Nodding Syndrome commenced in 2012 with establishment of an inter-ministerial committee coordinated by the Office of the Prime Minister under the Department of Relief, Disaster Preparedness and Refugees.

Various Ministries, Departments and Agencies were assigned roles according to their mandates, strategies were developed and interventions commenced in the affected districts.

The roles were assigned as follows; .


Office of the Prime Minister, Department of Relief Disaster Preparedness and Refugees - Overall coordination and provision of food.

.

Ministry of Gender Labor and Social Development - Psychosocial o Ministry of Education and sports - Special education needs .
Ministry of Agriculture Animal Industries and Fisheries Food support and social development production, provision of seeds and ploughing equipment o Ministry of ICT and National Guidance (OPM) - Publicize and create general awareness on the Nodding syndrome.
The committee assigned Ministry of Health the roles of; clinical management of cases, provision of therapeutic feeding for the severely ill and malnourished in a health facility set up, strengthening surveillance at community and health facility levels, conducting research into nodding syndrome to ascertain the cause, mode of transmission and treatment and vector control.

MINISTRY OF HEALTH INTERVENTION .

The Ministry of Health has provided clinical care to patients with Nodding syndrome and Epilepsy.
Currently, medicines are provided to 20 Health facilities in the affected districts, directly from National Medical Stores, and this is fuither decentralized to an additional 13 Health center IIs in highly affected parishes.

.

We continue to carry out outreaches to take services closer to those who live far away from the facilities D o Carry out community surveillance under the Integrated Disease Surveillance and Response on Nodding syndrome and other disease conditions in the districts.
o Continuing with bi- annual ground river dosing in the affected districts o Bi- annual distribution of lvemectin to kill the baby worrns that cause River Blindness .

The Ministry of Health has, and continues to undertake research to further understand Nodding Syndrome.

FUNDING TO THE DISTRICTS To date a total of 1,851,891,500 Ug.
shs has been transferred to the 6 districts of Kitgum, Lamwo, Gulu, Pader, Amuru and oyam and 2 Regional Referrals Hospitals of Gulu and Lira for the management of nodding syndrome.

These funds are for; .

Fuel for the outreach vehicles .

Vehicle maintenance .

Allowances for health workers for outreaches .

Community surveillance .

Search for those lost to follow up .

Provision of food, in the case of Kitgum Hospital.

To date 1,614,496,500 Ug.

shs.

has been utilized.


However, accountability for the funds has been poor with over 237,396,000 Ug.

Shs not appropriately accounted for.

Kitgum district is the biggest defaulter with over 109,31 1,860 million shillings not appropriately accounted for, followed by Lamwo district.

One hundred and thirty-three million Ug.

Shs (133,000,000) was approved this Financial Year 2017118 for management of Nodding syndrome.

73, 730,000 Ug.
73, 730,000 Ug.

Shs has already been processed for transfer to the beneficiary districts.

PLAN Rt.

Hon.

Speaker, the Ministry of Health plans to; o Continue with comprehensive case management and increase the number of health facilities receiving the medicines in the affected districts to take services closer to the people.

.

Continue with vector control activities and distribution of the drug that kills the baby worms (Ivemectin) .
The Ministry plans to integrate Nodding Syndrome activities into other health service interventions like immunization and other outreaches .

Exploring mechanisms of social integration through networking and collaboration with other sectors - Ministry of Gender, Labour and Social Development, Ministry of Agriculture, Animal Industry and Fisheries; and Office of the Prime Minister.
o Ministry of Health has initiated the process of taking over the rehabilitation centers left by Hope for Humans by requesting the district leaders to receive the facilities.

The Hon.

Minister of Health has already communicated this in writing to the district chairpersons of Kitgum and Omoro.

.

The Ministry of Health shall complete the Doxycyclin Nodding Syndrome research and implement the findings.
Ministry of Health would like to reiterate its firm commitment in managing the medical component of Nodding Syndrome as well as conclude on the much required research.

FOR GOD AND MY COUNTRY Hon.

Sarah Opendi Minister of State for General Duties 14th March 2018 @