methodological and desk review evaluation

NORWEGIAN ASSOCIATION FOR SPINA BIFIDA AND HYDROCEPHALUS (RHF)

INTERNATIONAL FEDERATION FOR SPINA BIFIDA AND HYDROCEPHALUS (IF)

Methodological and Desk Review Evaluation of the RHF and IF Supported Regional Programme for Early Intervention, Treatment and Rehabilitation of Children with Spina Bifida and/or Hydrocephalus in the Eastern, Central and

Southern Africa Region (1998-2009)

F I N A L R EPORT May 2009

Nyonga Rugumayo Amundsen Santa Vusia I. Kayonga

Dr. Finn Sommer

Final Report RHF/IF Evaluation May 2009 - NCG Norway 2

PREFACE This Report is entitled: Methodological and Desk Review Evaluation of the RHF (Norwegian Association for Spina bifida and Hydrocephalus) and IF (International Federation for Spina bifida and Hydrocephalus) supported Programme for Early Intervention, Treatment and Rehabilitation of Children with Spina Bifida and/or Hydrocephalus in East, Central and Southern Africa (1998-2009).

Also hereafter referred to as “the assignment”. Nordic Consulting Group (also referred to as “the Consultant”) undertook the assignment in Norway, Belgium and Uganda during March – May 2009. This Report contains an outline of the background and context of the assignment, and an overview of the RHF/IF Regional Programme, together with the Team’s assessment regarding the relevance; effectiveness and sustainability of the Programme (refer to Terms of Reference, Annex 1). The Team presents an analysis of the Programme implementation, successes and added value, including which challenges influenced the Programme implementation, identifies lessons learned and makes recommendations to be considered for future RHF/IF programmes. The team of Consultants comprised of: Nyonga Rugumayo Amundsen, Team leader, Nordic Consulting Group (NCG) Norway Santa Vusia I Kayonga, Team member, Nordic Consulting Group (NCG) Uganda Resource persons: Dr Finn Sommer, Consultant and former Head of the Paediatric Neurological Department, The National Hospital (Rikshospitalet) and Mike Fergus of Nordic Consulting Group. The Evaluation Team would like to thank RHF and IF for providing the opportunity to undertake the assignment, the various organizations in Uganda and the RHF/IF partners in Kenya, Tanzania, Sudan, Zambia, Malawi and various individuals for their collaboration and gift of their time in connection with the assignment. In particular, the Consultants would like to thank Kate Kanya and Dr Finn Sommer for their valuable input and contribution and the driver Frank who drove them safely to Mbale and back. The Evaluation Team would like to offer a special thanks to Els De Clercq of IF, Eli Skattebu of RHF, Brian Nsubuga of CURE Children’s Hospital and Collin Mugabi of Katalemwa for providing access to their database and for their professional and timely responses to our requests for information. The views expressed in the Report are those of the Consultants and do not necessarily reflect the views of RHF and IF, nor the authorities in Norway. Nyonga Rugumayo Amundsen Santa Vusia I. Kayonga Dr Finn Sommer Oslo and Kampala, May 2009


LIST OF ACRONYMS AND ABBREVIATIONS ASBAHU Association for Spina Bifida and Hydrocephalus in Uganda

CBM Christian Blind Mission

CBR Community Based Rehabilitation

CCBRT Comprehensive Community Based Rehabilitation

CCHU Cure Childrens’ Hospital Uganda

CIC Clean Intermittent Catheterisation

COMBRA Community Based Rehabilitation Alliance

CT scan Computed Tomography Scan

DPOs Disabled People’s Organizations

ETV Endoscopic Third Ventriculostomy

HC Hydrocephalus

KCH Katalemwa Chesire Home

KCMC Kilimanjaro Christian Medical Centre

RHF Norwegian Association for Spina Bifida and Hydrocephalus

IF/IFSBH International Federation for Spina Bifida and Hydrocephalus

IMF International Monetary Fund

NABP Norwegian Association of the Blind and Partially Sighted

Norad Norwegian Agency for Development Cooperation

NCG Nordic Consulting Group

NFU Norwegian Association for Persons with Developmental Disabilities

NHF Norwegian Association for the Disabled

NGOs Non-governmental Organizations

NOK Norwegian kroner

NTDs Neural tube defects

MOLGSD Ministry of Labour Gender and Social Development

MOUs Memorandums of Understanding

PAYE Pay As You Earn


PRSPs Poverty Reduction Strategy Papers

SB Spina Bifida

SBHAK Spina Bifida and Hydrocephalus Association in Kenya

SHIA Swedish Organisations' of Persons with Disabilities International Aid Association

TOR Terms of Reference

TSHS Tanzania Shillings

UNDP United Nations Development Programme

UN United Nations

UShs Uganda Shillings

WHO World Health Organization


TABLE OF CONTENTS

Preface..................................................................................................................................................... 2 Table of Contents ..................................................................................................................................... 5 1. Executive Summary ............................................................................................................................. 6 2. Introduction ........................................................................................................................................ 10 3. Programme Description ..................................................................................................................... 19 4. Evaluation Methodology..................................................................................................................... 37 5. Lessons Learned, Conclusions and Recommendations..................................................................... 60 Annex 1 – Terms of Reference............................................................................................................... 64 Annex 2 – Country Study Plan for Belgium and Uganda........................................................................ 71 Annex 3: Consultations and Interviews in Norway, Belgium and Uganda .............................................. 73 Annex 4 – Bibliography .......................................................................................................................... 76 Annex 5 – Tables.................................................................................................................................... 77


1. EXECUTIVE SUMMARY Introduction The RHF/IF Programme is implemented by RHF/IF-network partners in the six African countries of Kenya, Malawi, Sudan, Tanzania, Uganda and Zambia. The partners are local NGOs and international NGOs involved in the treatment and rehabilitation of children with Spina Bifida and Hydrocephalus. The RHF/IF Regional Programme has been implemented with the support of Norad and Atlas Alliance during this 10 year period. This timeframe refers to the period during which the Programme was introduced and the goals and objectives were defined and refined. To date, the Programme has received NOK 15,310,055.

Evaluation Objectives The Evaluation aims broadly at assessing the relevance, effectiveness and sustainability of the RHF/IF supported Regional Programme. Specifically, the Evaluation assesses:

i. The working methods of RHF/IF ii. The medical impact of the program on the target group (children and young persons with

Spina Bifida and/or Hydrocephalus) iii. The support to and impact on parent groups, how RHF and IF contribute to achievement of

the Program objectives agreed upon with the local partners in the South. iv. The choice of working methods, roles and responsibilities of all stakeholders v. The value added of RHF and IF as donors and partners.

Evaluation Approach and Methodology The Evaluation was divided into four phases. These being: desk study review, country study, Analysis and Reporting for both the Draft Report and Final Report. The Evaluation team used a variety of data collection methods according to the practical possibilities i.e. Desk studies and literature reviews of crucial documents, structured interviews of key informants and structured observations: a web based survey, key informant interviews, focus group discussions and self administered questionnaires. In addition, telephone interviews were also carried out. Background The treatment and rehabilitation of children and youth with Spina Bifida and Hydrocephalus is a highly specialized field requiring training of health personnel i.e. neurosurgeons, paediatricians, nurses, social workers and others. The RHF/IF Regional Programme represents pioneer work in the six African countries it is active in. There was no information and still inadequate information on prevalence of the conditions. In relation to other disabilities, Spina Bifida and Hydrocephalus have been largely ignored, and the focus has been mainly on physical disabilities. The absence of expertise and services was an impetus to start the partnerships. The provision of specialised treatment and rehabilitation supports parents in coping with the burden of bringing up a child with hydrocephalus and or Spina Bifida, supporting the child’s inclusion in society and improving their prospects in life. For the medical and other workers, the support enables improved expertise as well as provides opportunity to implement best practices in handling Spina Bifida and hydrocephalus medically as well as being conscious of and supporting the social aspects (management at family level) which is critical for the medical intervention to be continuously meaningful. It should be mentioned at the outset that the support provided by RHF/IF is not in isolation but complements work not only by the partner organisation but their partners in turn. For instance, inclusion at education and other social services level is made more possible because of the capacity to manage attendant disabilities. Organisations like Lillianefonds may provide support towards education amongst others, thereby providing holistic support to the child and family. IF Child Help Belgium is not part of the RHF/IF Programme, but may be utilized to support linkages with other organisations.


Main Evaluation Findings Relevance: The RHF/IF Regional Programme is of profound relevance to the target groups-children and/or youth with Spina Bifida and Hydrocephalus, their parents and families and the primary caregivers. It is also in line with the policies of the six partner countries that have Disability Acts, as part of their legislature. Effectiveness: The RHF/IF programme as has attained or contributed to the attainment of many of its objectives as well as the collective objectives with its partners. Knowledge on Spina bifida and hydrocephalus has improved, referral is getting much better to partners who can address SBHC medically and in terms of rehabilitation, more interest has been generated amongst medical workers on Hydrocephalus and Spina Bifida, a multi-sectoral approach to management of the two conditions is widely accepted by the partners and actively pursued helped through support to the salaries of critical professionals and equipment and supplies needed for medical intervention and management. Several strides have been made by the partners which illustrates the level of effectiveness: • In 2003 there were 15 RHF / IF Programme personnel in the six countries. By 2008, there were a

total of 28 Programme staff in all countries. • Production of publications: leaflets on Spina Bifida and Hydrocephalus are given to all partners

and what’s more the partners report and provide examples on their use. All partners use them. • CIC and bowel management leaflets were produced disseminated and are used by health

workers and help caregivers. • Parent groups: In 1998, there were no parent groups specifically on Spina Bifida and

Hydrocephalus, now in 2008 there are parent groups in all six partner countries • Programme objective was 200 children per year and therefore 2000 for the period of the

Programme. This has been achieved although not uniformly distributed across the countries. Numbers reached by partners/various services:

2008 Cumulative Figures: Total patients since start of programme:

Partner organisation

Hydrocephalus Spina Bifida Total

CCHU 2383 646 3029 OURS 165 79 244 CURE Zambia

259 80 339

Bethany relief and Rehabilitation Kijabe

1433 1753 3186

Khartoum CH 95 71 166 Katalemwa 292 104 396 Blantyre ---- ---- 162 CCBRT Moshi

93 69

CCBRT Dar 180[1]Overall Total 2008

7630


Sustainability • RHF/IF programme is largely dependent on Norad for funding since its start. Both organizations are

seeking to increase the numbers of funders.

• Involvement of local partners in the organisation of the yearly workshops and other training initiatives improves capacity to sustain their individual projects. Management of projects by the partners has provided an opportunity to incorporate aspects of the programme as part of the organisations’ overall programmes.

• Training of professionals is an important sustainability initiative much as it is necessary for implementation of medical intervention and management of the conditions.

• Parents groups are an important way of ensuring sustainability in terms of access to medical intervention, inclusion and management of the disabilities associated.

Main Programme Challenges • Partnerships despite MOUs may not always be optimal e.g. when there are conflicts within the

partner organizations.

• Despite linking up to partners who are part of the health system, it is unclear that information regarding Spina Bifida and Hydrocephalus is adequately collected.

• High staff turn over is a problem in the projects, sometimes without clear reasons as to why the staff have left. RHF/IF has next to no control over staff because ‘most salaries are paid by the partners not RHF/IF.

• The numbers in need of support are many but not all are reached.

• Poverty affects capacity to reach services particularly due to unaffordable transport costs.

• Parent groups are still not widespread and not able to reach all interested parents.

• Inadequacies in collecting information on Spina Bifida and Hydrocephalus through the national health management information systems so the actual magnitude is not known. Spina Bifida and Hydrocephalus is not yet a mainstream concern otherwise it would be taken up in all messages and surveys from or by the Ministries in charge of Health.

• Training of health personnel provides inadequate information on the two conditions in the case study country (Uganda), and this is also reflected in the other countries

• Isolation, stigmatisation (by communities) and abandonment (by fathers) and exclusion from education is still commonplace.

• Long distances affect effectiveness of outreach to homes/parents and management of urinary and bowel incontinence.

• Not all countries have overall coordination mechanisms for Spina Bifida and Hydrocephalus as do they for other types of disabilities.

• Involvement of youth with Spina Bifida and Hydrocephalus in activities is still at a low level. Main Lessons Learned • Intervention by NGOs in the provision of specialised expertise such as early intervention, treatment

and rehabilitation of children with Spina Bifida and Hydrocephalus can have a very great impact in countries where access to these services is almost non-existent.

• Teamwork with partners who have the relevant expertise as shown by the RHF/IF partners and links to the health system can prove very productive in implementation and follow-up of patients with Spina Bifida and Hydrocephalus.

• A focus on local partners /locally established organisations including universities for capacity building and research is important for effectiveness.

• Focus on professional development of local staff at different levels builds capacity at these levels.


• Focus on capacity building of local staff and on exchange between partners with a view to learn from each other’s best practices and develop synergies helps towards building ‘winning partnerships and networks.

• Important to link information and referral and strengthen linkages to the CBR process, as a best practice for management of disability, considering its holistic focus on the child and its environment as well as the opportunities to access services.

Main Recommendations to the Programme • MOUs at various levels is a good practice and should be continued,

• Use a wide network of Health centres/units of partners such as AVSI (an international NGO) in Uganda to expand information and link professionals to the training component.

• RHF needs to continue to improve its visibility in order to encourage other use organizations further. RHF/IF should make an effort to continue to improve visibility with Norad and the Norwegian embassies at country level in order to explore national level opportunities.

• Include schools and local governments as an additional target. For instance Katalemwa probably offers a good starting point as may CCBRT Moshi.

• Focus on youth as advocates and to improve awareness and as a sustainability factor.

• RHF/IF should revive the Africa newsletter as a means of informing a wider audience of the on-going activities in the South. This could be managed by the IF Child Help Africa office

• Sustainability needs building grassroots capacity through parent groups. RHF/IF should maintain this focus and perhaps link up with IF Child Help office in Uganda with a specific role in following up and strengthening these groups.

• Continue to popularize the use of neuro-endoscope amongst neuro-surgeons (training programme while ensuring that Ventriculo- Peritoneal shunts are replaced by personnel who are properly trained and in facilities that have capacity to manage or be responsive to complications that may arise as is done with iPATH.

• CIC and Bowel management should be taught in all facilities where Spina Bifida is managed.

• Widespread education on PREVENTIVE measures (targeting schools) i.e. pre-conception use of folic acid; hygiene on umbilical stumps should be focused on by all partners.

• Focus on advocacy for people with Spina Bifida and Hydrocephalus to enhance attitude change and government support as well as support of other Disabled Peoples Organizations.


2. INTRODUCTION This is the Final Report of the Methodological and Desk Review Evaluation of the RHF (Norwegian Asssociation for Spina Bifida and Hydrocephalus) and IF (International Federation for Spina Bifida and Hydrocephalus) supported Programme for Early Intervention, Treatment and Rehabilitation of Children with Spina Bifida and Hydrocephalus in the East, Central and Southern Africa Region (1998-2009). The Programme is implemented by RHF/IF partners in the six African countries of Kenya, Uganda, Tanzania, Malawi, Sudan and Zambia.

The RHF/IF Regional Programme has been receiving annual funding since 1998 as part of its long-term agreement with Norwegian Agency for Development Cooperation (Norad) and Altas Alliance. The amount of support totals NOK 15,310,055. An important aspect of this Evaluation is to draw lessons from the partnerships in order to serve as a basis for decisions regarding future work and strategies of RHF’s and IF’s engagement in the South. It will therefore be useful at the outset to present some general facts about disability in Africa and Spina Bifida and Hydrocephalus in order to provide the context of the Evaluation.

This document comprises of the following chapters:

• Chapter 1: Provides the Executive Summary for the Evaluation • Chapter 2: Presents an overview of the Evaluation Context • Chapter 3: Presents an overview of the Programme Description • Chapter 4: Provides the Evaluation Methodology and Main Findings • Chapter 5: Outlines Lessons Learned, Conclusions and Recommendations

The Annexes provide Terms of Reference (Annex 1), Country Study Plan (Annex 2), List of people consulted and/or interviewed (Annex 3), Bibliography (Annex 4) and Tables (Annex 5).

2.1 The Evaluation Context According to WHO, approximately 600 million people live with disabilities of various types in the world. The number is increasing due to various causes such as the rise of chronic diseases, injuries, car accidents, falls, violence and ageing. 80% of this total population live in low-income countries, and owing to poverty have limited or no access to basic services, including rehabilitation facilities.1

Lack of health care, illnesses and injuries often lead to lasting disabilities. For the same reason, existing disabilities easily deteriorate, or new disabilities are added. The causes of disability include communicable diseases (e.g. meningitis, tuberculosis, and measles), poor perinatal care, malnutrition/associated vitamin deficiencies and neural tube defects.2 Children with disabilities living in poor countries are especially vulnerable. Fewer attend school and approximately 50% of the 120 million children who do not go to school, have a disability. The majority of these are girls3.

1 www.who.int, Oct 2006 2 WHO Afro site on Community Based Rehabilitation: http://www.afro.who.int/dpr/cbr.html 3 Norad’s policy on inclusion of disability in development cooperation 2002

http://www.who.int/


In Africa, disability is a major public health problem. According to estimates, there are approximately 35 million disabled people, which would be ca. 7% of the total African population. About 75% - 80% of disabled people in the African Region are found in rural areas, where services for prevention and rehabilitation are either limited or unavailable4.

The countries in which the programme runs are typically areas plagued by poverty and disease with service delivery in appalling state. They are characterised by no or few specialist health personnel and even where these exist, the facilities for them to work may be quite limited. Of the 177 countries assessed for the Human Development Index (HDI) in UNDP’s “Human Development Report for 2007/2008, Malawi ranked 174 or third last, followed by Zambia which was ranked 165, Tanzania 159, Uganda 154, Kenya 152, and North Sudan ranked 147 or highest within the group of partner countries. Norway was ranked number 2 (refer to Table 1 below).

While service delivery in general and health service delivery is poor in these countries, the situation is several times worse for services for disabilities, especially related to neurological conditions and severe disabilities. There is a tendency for disability to exclude the persons concerned from the rest of the community because of negative attitudes, unsuitable facilities or physical and social barriers amongst other challenges. Public institutions often do not have strategies for dealing with disability and ensuring that the rights and needs of persons with disabilities are met.

The treatment and rehabilitation of children and youth with Spina Bifida and Hydrocephalus is a highly specialized field requiring training of health personnel i.e. neurosurgeons, paediatricians, nurses, social workers and others. The RHF/IF Regional Programme represents pioneer work in the six African countries that it has been active in, since there was no information and still inadequate information on prevalence of the conditions and that it was invisible due to practices related to it. In relation to the other disabilities, Spina Bifida and Hydrocephalus has been largely ignored, and the focus has been mainly on physical disabilities. This is most likely due to the absence of expertise and specialised treatment and rehabilitation that would act as a support to assist parents in coping with the burden of bringing up a child and the child’s inclusion in society.

According to the Poverty Reduction Strategy Papers (PRSP’s) 5 of the different RHF/IF Programme countries that receive support, people with disabilities are considered a priority target group. The RHF/IF programme partner countries have a developed policies based on the UN convention on the Rights of Persons with Disabilities. In short, the Convention calls for national CBR programmes as a preferred strategy for rehabilitation, and it emphasizes roles and responsibility between relevant authority units, civil society, organisations for the disabled and for international actors.

4 WHO Afro site on Community Based Rehabilitation: http://www.afro.who.int/dpr/cbr.html 5 Poverty Reduction Strategy Papers (PRSPs) are prepared by governments in low-income countries through a participatory process. This process involves national stakeholders, donor partners, including the IMF and the World Bank. Source: http://www.imf.org/external/np/exr/facts/prsp.htm


Table 1: Human Development Index for the six RHF/IF partner countries was based on the following four variables6

Country

Average life expectancy at birth (years)

Adult literacy for persons over 15 years

Gross education enrolment ratio primary, secondary, tertiary

GDP per Capita (PPP in USD)

Rank (out of 177 countries)

Kenya 52.1 73.6 60.6 1240 152/177

Malawi 46.3 64.1 63.1 667 174/177

Uganda 49.7 66.8 63.0 1454 154/177

North Sudan 57.4 60.9 37.3 2083 147/177

Tanzania 51.0 69.4 50.4 744 159/177

Zambia 40.5 68.0 60.5 1023 165/177

2.2 Spina Bifida and Hydrocephalus One to two in a thousand live born children have Spina Bifida and 80% of them develop Hydrocephalus in most parts of the world7. Hydrocephalus can cause severe disabilities such as mental retardation, epileptic fits and blindness. The majority of these disabilities could have been avoided if appropriate and adequate information, medical treatment and rehabilitation could have been available at an early stage of diagnosis.

2.2.1 Spina Bifida Spina bifida comes from the word for ‘split spine’ in Latin. It is one of a class of serious birth defects, called neural tube defects (NTDs). This involves damage to the bony spine and the nervous tissue of the spinal cord. Some vertebrae of the spine fail to close properly during development and the spinal cord’s nerves fail to develop normally. This defect occurs between day 22 to 24 after the mother becomes pregnant. The exposed spinal cord’s nerves can be further subjected to more damage. Spina bifida occurs in varying degrees such that nerve signals to most parts of the body located below the “split spine” are damaged resulting in a wide range of muscles, organs and bodily functions being affected. Some of the consequences of Spina Bifida vary from minor to severe difficulties with mobility of legs and feet – inability to walk and reduced and/or lack of skin sensitivity which can result in proneness to pressure sores and burns; bone problems, poor bladder and bowel control resulting in some degree of urinary and faecal incontinence. These consequences can be described as giving rise to some forms of disability.

6 UNDP Human Development Report, 2007/2008, New York 7 M. Miles (2002) Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society 17: 643-658,

There is no cure for Spina bifida, however vitamin folate (folic acid) can prevent up to 70% of Spina Bifida cases if taken daily one month before conception and daily throughout pregnancy. The recommended dosage is 400 mg8. Additionally, foods naturally rich in folate – asparagus, spinach, oranges, bananas and legumes are recommended in the diet of the mother. Spina Bifida can occur at any place along the spine. However, surviving babies are generally affected lower down the spine because, at higher levels, the survival rate is low. The exact cause is not completely understood, but it appears that a combination of genetic and environmental factors is responsible. Detection In most developing countries, access to good quality ultrasound is limited, hence the strong emphasis on taking folic acid. In most developed countries, more than 90 per cent of cases of Spina Bifida are usually detected using ultrasound at 18 weeks of pregnancy. If present, specialist gynaecological care occurs until birth. If first detected at birth, there will be a large soft lump or lesion on the back (refer to Fig.1). The large lump or lesion contains spinal cord nerves and tissue. Exposed nerves must be surgically placed gently back under the skin within 24 hours.

Fig. 1: Illustrates Spina bifida in an infant. 9 Fig. 2: CT scan of brain with hydrocephalus (left) and normal brain10

2.2.2 Hydrocephalus Hydrocephalus comes from the Greek words hydro" meaning water, and "cephalus" meaning head, and this condition is sometimes known as "water on the brain “(refer to Fig. 2). Hydrocephalus affects most children born with Spina Bifida, however there are other causes of Hydrocephalus. Hydrocephalus occurs when the production of the cerebrospinal fluid is greater than the absorption or when the drainage pathways become blocked. The condition can be present at birth, in premature babies, children and adults. It can be due to meningitis

8 www.if-global.be

9 Source for figure 1: Wikepedia.com 10 Source for figure 2: Wikepedia.com


http://www.if-global.be/


infections of membranes covering brain, this infection may block drainage pathways resulting in hydrocephalus; can occur at any age. Tumours can also result in poor drainage of the fluid. Hydrocephalus is much more common in Africa due to post-natal infections (Dr Warf). Detection and treatment The symptoms of Hydrocephalus can be observed by measuring the size of a baby’s head. If the head is growing too quickly, then a doctor should be contacted. Other signs are large veins on scalp and the baby appears to look downwards, drowsiness, fits and vomiting. In some conditions, no treatment is required, while in others treatment is short-term. Medication sometimes can be used to treat hydrocephalus for a short period. Surgical treatment is the usual course of action by the insertion of a shunt to drain excess fluid from the brain and prevent the condition from worsening. A shunt is a small plastic tube that passes from the brain under the skin to the abdomen, remaining completely inside the body. It allows the head and brain to grow normally when well functioning. Additionally, in addition to shunting, ETV (Endoscopic Third Ventriculosomy) is an alternative surgical intervention that was further developed by Dr Warf, a renowned neurosurgeon during his tenure at CURE Children’s Hospital in Uganda. ETV involves making with an endoscope a natural by-pass of the fluid in the head, thus eliminating the use of a shunt. This procedure has shown good results and is considered more appropriate for use in resource-poor settings. The ETV is a surgical intervention that is also used at The National Hospital in Norway alongside shunting11. An important aspect of follow up of the patients is rehabilitation which is described below. Rehabilitation Rehabilitation is an important aspect of follow up from the treatment. In broad terms, it is the process that aims at enabling people with disabilities to reach their physical, intellectual and/or social functional levels. Rehabilitation provides people with disabilities with the tools to change their lives in order to become more independent in society (refer to Box 1). It also includes ways to provide and restore functions or compensate for the loss or absence of a function e.g. a prosthetic limb. In undertaking rehabilitation of patients with Spina Bifida and/or Hydrocephalus, medical rehabilitation workers need to make a number of assessments such as: presence or absence of movements in legs, absence of feeling in legs, assessments of contractures and deformities, and equipment aids for mobility12.

11 Source: Dr Finn Sommer (personal communication) 12 Source: WHO 1996, “Promoting the Development of Infants and Young Children with Spina Bifida and Hydrocephalus”


Box 1: Glossary of terms 1. Disability: is a summary of many different functional limitations occurring in any population globally.

Medical or mental illnesses may leave one disabled physically, intellectually or lead to sensory impairment.

2. Primary prevention: describes action aimed to prevent the occurrence of impairments such as physical, intellectual impairments. There are two types of prevention: primary prevention and secondary prevention

3. Secondary prevention: May include various interventions such as primary health care, prenatal and postnatal care, and prevention of disability brought about by environmental pollution or armed conflict.

4. Rehabilitation describes the intervention aimed at enabling persons with disabilities to achieve and maintain a number of functional levels such as their optimal physical, intellectual and social functions. The intervention provides persons with disabilities with tools to enable a higher level of independence. It may also include interventions to provide and/or restore functions or compensate for the loss or absence of a function through assistive devices, mobility training etc. Rehabilitation also involves addressing social barriers that cause disability.

5. Shunt: is a small plastic tube that passes from the brain under the skin to the abdomen. 6. Endoscopic Third Ventriculosomy (ETV): is an alternative surgical procedure that involves drainage

of the brain without a shunt i.e. making with an endoscope a natural bypass of the fluid in the head

It should be noted that treatment and rehabilitation of Hydrocephalus is less complicated than is the treatment of Spina Bifida. This is mainly because Spina Bifida has more disabilities linked to the bladder, bowel and motoric development.

2.3 Norwegian Association for Spina Bifida and Hydrocephalus (RHF) The Norwegian Association for Spina Bifida and Hydrocephalus (RHF) was founded in 1973 by a small parent group and has developed to become the national organization for the two disabilities and their families. It has active local chapters in almost every county in Norway, and has its headquarters in Oslo, Norway. Since 1998 both RHF and IF have been involved in the joint Regional Programme pertaining to Early intervention, Treatment and Rehabilitation of children with Spina bifida and Hydrocephalus in six African countries.

RHF started as a small parent group of volunteers, and has since developed to a strong user organization which improves and influences the services for the target group in Norway. As a parent and user organization, RHF has contributed to improved treatment and healthcare for children and adults with Spina Bifida and/or Hydrocephalus and inclusion of their members in society.

The strategy of RHF’s international solidarity work is to use this potential and capacity in strengthening and building parents groups and organizations in the countries that receive support through the programme. RHF sees peer support as an important key in the development of the RHF/IF Regional Programme. In Norway, RHF is a volunteer-based organization with 1 part-time employee for the RHF/IF Regional Programme. RHF is a member of Altas Alliance which is a foundation of NGOs working with disability in countries in the South. RHF became a member of Atlas Alliance in 2000. Additionally, a representative from RHF is a permanent member on the IF board. RHF relies on membership fees and donations.


2.4 International Federation for Spina Bifida and Hydrocephalus (IF) The International Federation for Spina Bifida and Hydrocephalus (IF) is the global knowledge network on Spina Bifida and Hydrocephalus, as the worlwide umbrella organisation of these two disabilities and their families. RHF was one of the founding members of the International Federation for Spina Bifida and Hydrocephalus in 1979. It has a membership comprising of 35 regional and national umbrella organizations for Spina Bifida and Hydrocephalus. IF has contacts with regional and national organizations in over 50 countries across all continents.

The mission of IF is to improve the quality of life for people with Spina Bifida and/or Hydrocephalus throughout the world and to decrease the prevalence of Spina Bifida and Hydrocephalus by primary prevention. IF’s approach to fulfilling its mission is by spreading knowledge, keeping updated on medical and scientific developments on the treatment of Spina Bifida and Hydrocephalus, providing a stimulating environment for exchange and contact between parents and persons with Spina Bifida and Hydrocephalus. IF holds the Consultative Status with the United Nations and the Participatory Status at the Council of Europe. It has a working relationship with the World Health Organisation and holds a board position at the European Disability Forum. IF has its headquarters in Brussels, Belgium.

The international solidarity work is steered by a group of experienced volunteers and staff from both RHF and IF. The Steering Group consults and involves experts and professionals on different specific areas such as neurosurgery, nutrition and project management. IF has its headquarters in Brussels, Belgium. Most of its funding comes from donors e.g. Norad, SHIA, donations and membership dues. IF has a Project Manager who works 100% on development work.

2.5 Solidarity in South The RHF/IF Regional Programme started as a pilot project in 1998 in four African countries, Tanzania, Kenya, Uganda and Zambia and has since expanded its projects and partners to six African countries i.e. Malawi and Sudan. The main donors are Norad and Atlas Alliance. Other donors include SHIA of Sweden. IF has had activities in Vietnam. All collaborating partners are located in Africa for the RHF/IF Programme. Since the vision of the Regional Programme is to build on existing health service delivery systems, all partners chosen by RHF and IF focus care about treatment and rehabilitation of children with Spina Bifida and Hydrocephalus and social inclusion of the patients and their families.

The partners were chosen via RHF/IF networks and also after field visits to these countries. The RHF/IF Regional Programme was pioneering work in the countries of choice. In the partner countries the situation is also such that there is little or no information on the prevalence of Spina Bifida and Hydrocephalus. Therefore, an important aspect of the early treatment RHF/IF Programme involved the identification of children with Spina Bifida and Hydrocephalus by the partner organizations.

The partners that the RHF/IF has been cooperating with are local NGOs backed by larger international NGOs that work with treatment and rehabilitation of children with disabilities in general. Through the partnership with RHF/IF, these organizations have integrated the treatment and rehabilitation of children with Spina Bifida and Hydrocephalus into their portfolios. These organizations are both community based organizations and referral hospitals.


2.6 Partners in South A brief outline of each of the selected partners for the RHF/IF supported Regional Programme is provided below. It should be noted that the larger international NGOs that back the partners are: Christian Blind Mission (CBM), CURE Children’s Hospital, Bethany Relief and Rehabilitation and Leonard Cheshire Home. Lilianefonds Mediators Network is a partner in the network that deals directly with the RHF/IF Programme partners in the South. It should be noted that the two International NGOs mentioned in the Report i.e. IF Child Help Belgium and AVSI are not part of the RHF/IF Regional programme, although there are links to RHF/IF Programme in Uganda.

In Chapter 3, we describe the RHF/IF Regional programme activities and partners in more detail. However, a brief description of each partner is provided below.

The RHF/IF Regional Programme partners are:

• Tanzania: CCBRT Disability Hospital, Dar es Salaam • Tanzania: CCBRT Community Rehabilitation and KCMC Kilimanjaro, Moshi • Uganda: Katalemwa Chesire Home, Kampala • Uganda: CURE Children’s Hospital of Uganda, Mbale • Kenya: Bethany Kids at Kijabe Hospital, Kijabe • Malawi: Queen Elisabeth General Hospital, Blantyre • Sudan: Chesire Homes Khartoum, Khartoum • Zambia: Chesire Homes CBR, Lusaka

Tanzania: CCBRT Disability Hospital and CBM (international NGO) in Dar es Salaam Comprehensive Community Based Rehabilitation in Tanzania is a private NGO registered under Tanzanian Societies Act in 1994 in Dar es Salaam. CCBRT provides physical rehabilitation through medical care at the CCBRT Disability Hospital. It has a special ward for Spina bifida and Hydrocephalus sponsored by IF. Its goal is to contribute to provision of accessible and affordable services for persons with disability in Tanzania. The collaboration with IF started in 1998. Tanzania: CCBRT Community Rehabilitation and KCMC Kilimanjaro in Moshi The CCBRT Community Rehabilitation Kilimanjaro is located in Moshi, Tanzania. It enables social inclusion i.e. people with disabilities are encouraged to take care of themselves, become personally as independent as possible, improve their social relationships, take part in the activities of the communities and contribute towards their own and their family’s livelihood. It prepares and refers children who need surgery to CCBRT in Dar es Salaam. For medical care CCBRT collaborates with Kilimanjaro Christian Medical Centre (KCMC) in Moshi. KCMC is a referral covering 6 districts in Arusha. The collaboration with IF started in 1998. Uganda: Katalemwa Cheshire Homes of Kampala and CBM (International NGO) Katalemwa Cheshire Home is a disability rehabilitation centre in Kampala. Children with Spina Bifida and Hydrocephalus are identified, referred to CURE Children’s Hospital in Mbale for surgery and followed up after necessary surgery. Katalemwa is an expert in technical aids, producing wheelchairs, sitting aids etc.


Other expertise Katalemwa has is in bringing parents together, teaching and empowering them. The organization signed an MOU with IF in 1998. Uganda: CURE Children’s Hospital of Uganda (CCHU) in Mbale(International NGO) The CURE Children’s Hospital of Uganda has become the referral hospital for Spina Bifida and Hydrocephalus in Uganda. It works closely with other health centres in Uganda for referral and follow-up of children. The hospital provides world class expertise on neurosurgical care for children with Spina Bifida and Hydrocephalus. It has also become an expert on alternative surgery of Hydrocephalus with ETV, making with an endoscope a natural bypass of the fluid in the head. CURE Children’s Hospital, signed an MOU with IF in 2000. Kenya: Bethany Kids at Kijabe Hospital at Kijabe and Bethany Relief and Rehabilitation International (International NGO) Bethany Kids at the Kijabe hospital is the children’s ward of Kijabe Hospital. It has a 46 bed capacity and has become the referral hospital for neurological patients. It has outreach clinics as far north as with the border with Somalia. It is a specialised neuro-clinic with a multi-disciplinary approach follows up on neurogenic bowel and bladder disorders. 90% of their patients have Spina Bifida and Hydrocephalus. Bethany Kids took over from the collaboration with AIC Bethany Crippled Children’s Center of Kenya which had been collaborating with IF since 1999.The hospital started its collaboration with IF in 2005. Malawi: Queen Elisabeth General Hospital in Blantyre Queen Elisabeth General Hospital aspires to be the centre of excellence of tertiary health care through the provision of specialised services e.g. neurosurgery to children with Spina Bifida and Hydrocephalus. The hospital collaborates with district hospitals where clinical officers are trained to insert shunts. The hospital is responsible for neurological care and follow-up of the children. The collaboration with IF started in 2000. Sudan: Cheshire Homes Khartoum in Khartoum CBM (International NGO), Leonard Cheshire Home Khartoum Cheshire Home is a rehabilitation centre for children with physical disability. It is a registered NGO in Sudan and established in 1974. It has an in-patients and out-patients department, and 50 children can be lodged when recommended by volunteer doctors. Services provided to the patients are: physiotherapy, surgery, speech therapy, hydrotherapy, orthopaedic workshops, clinic, schooling and Community Based Rehabilitation. The collaboration between IF and Cheshire Homes started in 2004. Zambia: Cheshire Homes CBR of Lusaka, CBM (International NGO) and Beit CURE Hospital The Cheshire Homes CBR is a rehabilitation centre for children with physical disabilities. Cheshire Homes CBR collaborated with the University Teaching Hospital in Lusaka for neurosurgery. The collaboration IF started in 2000 and in 2008, Beit CURE Hospital took over and started providing paediatric orthopaedic surgery and neurosurgery.


3. PROGRAMME DESCRIPTION 3.1 What the RHF/IF supported Regional Programme 13 is all about In this section, the Consultants provide an overview about the Regional Programme as stated in the Project outline(s). This includes its objectives, the stakeholders, partners and activities related to Regional RHF/IF Programme, Programme management and reporting and Progress to date.

Introduction

The treatment and rehabilitation of children and youth with Spina Bifida and Hydrocephalus is a highly specialized field requiring training of health personnel i.e. neurosurgeons, paediatricians, nurses, social workers and others. The RHF/IF Regional Programme represents pioneer work in the six African countries that it has been active in, since there was no information and there is still inadequate information on prevalence of the conditions.

Initial activities related to the RHF/IF Regional Programme started in 1996. The previous IF President and current IF President received a mandate from the IF Board to conduct a consultancy visit to four countries and local organizations in East Africa. The purpose of this field study was to provide the IF Board with advice on the best possible strategies to achieve its goals i.e. to ‘prevent Spina Bifida and Hydrocephalus as much as possible, and to improve the lives of persons with these impairments and their families by organising appropriate training, surgery and rehabilitation through existing medical, therapeutic and community based services in the different partner countries14’ As a result of the consultancy visit in 1996, RHF/IF went ahead and applied for support from Norad to start a pilot project in initially in Tanzania, Uganda and Kenya.

An important aspect of the Regional Programme is to identify the children with Spina Bifida and Hydrocephalus, since this information has been lacking in the six partner countries. It should be noted that Spina Bifida and Hydrocephalus cannot be cured but require specialised life-long treatment and rehabilitation.

The Regional Programme later evolved and began collaboration with different partners. The projects and collaboration began at different times and following steps specific to the capacities, needs and mandates of the organisation’s RHF/IF partners with. For instance, partnership with Katalemwa Cheshire Home began in 1998, while partnership with CURE Children’s Hospital Uganda started in 2000. Partnerships have developed over the years and these have been formalised in MOUs which stipulate the interests and responsibilities of RHF/IF and the partner institutions.

RHF/IF focuses on the client and the quality of life of the child (and adult) with Spina Bifida and Hydrocephalus within the family and community context. The focus on parents / care givers and the quality of life of the children after surgery is ‘client focussed’. This is one of the areas in which RHF has its strength in the partnership. Parent and user groups are an important element of support to the families and to ensure that there is continued good practice at the family level. The user groups ideally act as a buttress for the families.

13 Slight variations in the name of the project since it begun, reflecting its evolution and certainty in its scope e.g. in 2001 annual report, it was referred to as Early intervention, Rehabilitation and Follow up of Persons with Hydrocephalus and Spina Bifida in four locations in Eastern Africa, and elsewhere in Developing countries.. 14 Extracted from the 2005 Annual report


Parent groups are an important element in continuation of management due to the support they can potentially and do give. More recently, RHF/IF has signed MOUs with OURS in Mbarara as an expansion of its activities in Uganda.

The main objectives of the Regional Programme are outlined below:

Knowledge on treatment and care: To ensure that knowledge regarding the Improving of the basic local conditions for the treatment and rehabilitation of children with Spina Bifida and Hydrocephalus, is available thus ensuring the best possible medical care and rehabilitation in each specific country and situation, and ensuring sustainable and affordable health care for the target group Training and research:

• Increasing knowledge on the diagnosis and building expertise on care and rehabilitation through training and research, facilitating training and exchange, developing training material and information packages, spreading the knowledge gained in developing countries worldwide.

• Supporting the development of democratic user groups in civil society (parent and

user groups) This involves supporting the development of user groups in developing countries, and empowering these groups through peer work, trainings, exchanges and the development and use of teaching materials.

• Increasing the expertise on inclusion of people with Spina Bifida and

Hydrocephalus:

• This applies to all aspects of society in developing countries i.e. school and in the communities

• Decreasing the incidence of the diagnosis through primary prevention and research

15

The stakeholders for the RHF/IF supported Regional Programme are:

• Children and youth with Spina bifida and/or Hydrocephalus in the selected RHF and IF partner countries

• The children’s primary caretakers – parents and family in the RHF and IF in the selected partner countries

• Professional/medical caregivers of the child and/or youth in the RHF and IF in the selected partner countries

3.2 RHF/IF Regional Programme partners and activities The RHF/IF Regional Programme is supported by Norad and Atlas Alliance. This support has covered the period from 1998 to present. The Regional Programme is implemented by RHF/IF’s collaborating partners in the six African countries as mentioned earlier (refer to

15 Taken from Project Outline document 1998, Annual Report 2005


Section 2.6). In this section, the RHF/IF partner activities are outlined in relation to the Regional Programme. Introduction: Through the MOUs signed between the partners in the South, the roles of RHF/IF and the partners are regulated. In the MOUs, RHF/IF’s vision is to provide appropriate, specialised affordable services to patients with Spina Bifida and Hydrocephalus, even to poor families in rural areas. To this end, RHF/IF agree to the role of donor i.e. mobilizing funds via partners and donor networks, provision of medical supplies and equipment that are not readily available in partner countries for free (includes shunts, oxybutonine capsules). The partners agree to ensure that patients with Spina bifida and Hydrocephalus regardless of status, religion and otherwise receive appropriate treatment, with specified budgets that include activities such as training of staff, surgeries, support to parent groups. The budgets are reviewed annually and MOUs renewed according to performance.

Tanzania: CCBRT Disability Hospital in Dar es Salaam RHF/IF Regional Programme activities: The collaboration with IF started in 1998. Previous activities related to the RHF/IF Regional Programme at CCBRT Disability Hospital included training of local professionals to insert shunts and Research on NTDs (neural tube disorders). For various reasons, the disability hospital in Dar had deteriorating relations and difficulties with RH/IF project (2007 report), prompting a search for other partnerships in which surgery could be done. Part of the problem appears to have been the cost of treating children with SBHC. This difficulty illustrates the need to develop very specific protocols of working together and to clarify in clear terms the elements of partnership as was done by the project in terms of the application format but without specific MOUs until more recently. It also illustrates the need for overall policy. In terms of RHF/IF project staff, in 2003, there was 1 pediatrician and 1 Spina Bifida nurse. By 2008, there was 1 nurse midwife, 1 nursing officer and 1 parent trainer16. For 2006, in order to reach more children from rural areas, mobile clinics were arranged 3 times a month in 4 districts. All mothers received folic acid, 107 children followed CIC and bowel management17.

Another problem has been high staff turn over after a lot of investment in specialized training in CCBRT in Dar and even in Moshi. In addition, a doctors’ strike disrupted services at one point. It is significant that problems with management in this hospital were also a challenge.

Tanzania: CCBRT Community Rehabilitation, Kilimanjaro in Moshi RHF/IF Regional Programme activities. KCMC is a referral centre covering 6 districts in Arusha. The collaboration with IF started in 1998. RH/IF Regional Programme in Tanzania in relation to early intervention, treatment and rehabilitation of children with SB and or HC has focussed on the community based rehabilitation model in two areas, Dar es Salaam, which has a disability hospital and in Moshi area with an NGO based partner (Comprehensive Community Based Rehabilitation Tanzania CCBRT). Just as in Malawi, early intervention by the first 5 years of the project (2002) included training of local professionals to insert shunts18.

16 IF secretariat 17 Narrative report to IF for Dar, 2006 18 Supervised by a visiting neurosurgeon


In terms of RHF/IF project staff, in 2003, there was 1 pediatrician and 1 physiotherapist. In 2008, there were 2 pediatricians, 1 Spina Bifida nurse and 1 physiotherapist as a result of project expansion. The programme in Tanzania has included research on NTDs, development of parent groups (emphasised by 2002). Tanzania has been lauded as the area with best practice in terms of involvement and participation of parents. Associations are registered in both Dar and Moshi, with inspiring examples of parents helping each other out and participating in training, especially in CIC and bowel management. This is an area that is very important for parents and for children living with the effects of SBHC. In 2006 alone, there were 7 parent meetings organized and teenagers with Spina Bifida elected on Parents group committee19. It is noted that by 2008 the capacity to carry out ETVs had been developed in Tanzania. Moshi was considered a training centre for the management of the neurogenic bladder, even as early as 2002.

Uganda: Katalemwa Cheshire Homes of Kampala RHF/IF Regional Programme activities The organization signed an MOU with IF in 1998.20The strategic plan of Katalemwa developed about 2 years ago21 now covers all kinds of children with disabilities and there is a focus on care and treatment, for instance, to alleviate pain that children may be in. The RH/IF intervention which included supporting professionals to provide specific care was important in focussing attention on children with Spina Bifida and Hydrocephalus… ‘ the numbers have increased now because of the partnership with IF…support in terms of resources has enabled us to reach out and parents often lead us to other children’. This development identifies well the importance of the RHF model which focuses attention on parents (and other caregivers at the home) as the centre of support to clients with Spina Bifida and Hydrocephalus. In terms of the RHF/IF project staff, in 2003, there was 1 social worker and the programme expanded to include 1 nurse and 1 financial administrator by 2008. Resources are also used to provide transport to CURE for surgery while some drugs are also provided to parents to ‘prevent further infections’. The strategy pursued now focuses on formation of Parent learning committees22 at Parish level so parents can come together to learn and support each other, currently focussing on 5 districts. Information is disseminated through meetings, pamphlets and outreach sessions. This supports an education strategy to enable parents follow important procedures (management).

The RHF/IF support has been crucial in training and access to information and other forums that support skills development. CHK has attended conferences that focus on care and treatment, organised by RHF/IF and which bring parents together and empowers them … ‘parent to parent’ focus.

In terms of the RHF/IF Project, in 2003, 179 children with Spina Bifida and Hydrocephalus were supported at Katalemwa, while in 2008 there were 464 children supported. The rehabilitation activities expanded and collaboration with OURS in Western Uganda was started in 2008. For parent workshops and training, in 2003 there 46 workshops and training and in 2008, the number increased to 198.

19 Narrative report to IF, 2006 20 IF Secretariat 21 Key informant interview CHK 22 CHK has secured funds (from CORDAID)


Uganda: Mbale, CURE Children’s Hospital of Uganda (CCHU) RHF/IF Regional Programme activities CURE Children’s Hospital, signed an MOU with IF in 2001.As early as 2002, CURE hospital was acting as a teaching hospital and organising teaching programmes focussing on Post graduate training of surgeons; medical officer training and continuing Nursing Education23. In terms of RHF/IF project staff, there was 1 social worker, and by 2008, there were 3 social workers, 1 Spina Bifida nurse and 1 Public Relations officer (data from narrative reports to IF). The intervention by Dr Warf in starting a neurosurgical fellowship in ETV has had wide reaching positive impacts across the region. In 2002, a long term objective in this area was to utilise the ‘wealth of experience in ETV’ in Mbale in a clinical fellowship for training of neurosurgeons across the continent so that children could benefit from the advantages of the technique in managing HC. Subsequently, a number of exchanges have been made with various hospitals and universities, although not all institutions have been cooperative in sending surgeons to CURE Mbale. The project started in Uganda in 2001. The services of Dr Warf directly at CCHU ended although he continued to serve as a consultant. Dr Warf ensured that there was a local successor to continue his work within neurosurgery. His successor is Dr Mugamba, a Ugandan neurosurgeon. Mbale has continued to be a referral hospital for Spina Bifida and Hydrocephalus in Uganda, and developed linkages for referral with CHK24. The outreach clinics and follow up collaboration with Katalemwa has continued and other partners e.g. OURS in Mbarara. In terms of information provision, most health professionals and lay people know that in cases of particularly Hydrocephalus and Spina Bifida, CCHU Mbale is the place to refer to.

According to data received from CURE Mbale, between 2000 and 2009, a total of 3581 cases of Spina Bifida and Hydrocephalus have been treated.

Uganda: OURS in Mbarara RHF/IF Regional Programme activities The MOU between IF and OURS was signed in 2008 as part of the expansion of RHF/IF’s activities in South Western Uganda. OURS is located in Mbarara. Partnership with OURS supports improvement in referral and follow up of surgical intervention by CURE Children’s Hospital, while Katalemwa provides pre and post operative care and training.25 This partnership is important as part of a system of improved and sustainable service delivery and promotion of the rights of children and adults living with the effects of Spina Bifida and Hydrocephalus and those of their families.

23 Progress report 2002 24 2007 Progress Report; Several interviews with parents and staff of both CURE and Katalemwa as well as other reports confirmed this. 25 Reference to Evaluation of the Project by Eva Elisabeth Naess and Dr Carla Verpoorten in the report of February 2007


Kenya: Kijabe, Bethany Kids at Kijabe Hospital RHF/IF Regional Programme activities Bethany Kids at the Kijabe hospital is the children’s ward of Kijabe Hospital. It has a 46 bed capacity and has become the referral hospital for neurological patients. It has outreach clinics as far north as with the border with Somalia. It is a specialised neuro-clinic with a multi-disciplinary approach and its follows up on neurogenic bowel and bladder disorders. 90% of their patients have Spina Bifida and Hydrocephalus. Bethany Kids took over from the collaboration with AIC Bethany Crippled Children’s Center of Kenya which had been collaborating with IF since 1999.The hospital started its collaboration with IF in 2005. Kijabe has become the referral hospital for Spina Bifida and Hydrocephalus in Kenya. Children, parents and professionals are trained in this well functioning hospital.

The activities mainly hinged on the provision of equipment for surgery by RHF/IF and implementation of the CIC programme, and capacity building of parent groups. The 2004 Bethany plan requested Bethany to identify and evaluate children who need medical care through mobile clinics, provide in-patient care to approximately 300 inpatients and to facilitate education and outreach programs. The specific goals of the Bethany 2004 plan included:

• Surgical implantation of shunts for Hydrocephalus patients • Implementation of CIC programme • Capacity building of parent groups, empowerment and awareness • Prevention • Special request

Results Shunt surgery: In 2004, Bethany completed 138 surgical VP shut placement procedures to implant or revise shunts in children. Implementation of CIC programme: The main goal of the CIC programme was to provide evaluation and training for Spina Bifida patients. The need is to determine if there is any retention of urine, bladder infection, reflux or kidney failure.

In 2004 Bethany admitted 139 Spina Bifida inpatients for treatment. 113 of these patients received at least one ultrasound in order to determine the condition of bladder and bowels as well as determining if there was any retention of urine. All of these patients also received laboratory tests in order to determine is there was any infection present and/or liver failure. Finally the parents of all of these patients received personal education and training.

For capacity building parent groups, empowerment and awareness, in 2004 Bethany staff completed 146 total clinics in 9 locations around Kenya. In these clinics, IF funded staff saw over 675 patients. Bethany nurse educator staff facilitated education and outreach activities at the mobile clinic locations and organized the implementation of a formal Spina Bifida and Hydrocephalus Association support group in Nairobi. In 2006, 467 children with Spina Bifida and Hydrocephalus were operated at Kijabe. For parent meetings, 31 meetings took place with the 4 parent groups in locations that include Mombasa, Nairobi and Naivasha (Source: Progress reports to IF). Prevention – Bethany purchased approximately 70,000 folic acid tablets which were distributed at clinic locations and to patient parents/guardians at discharge from the hospital. 843 mothers received folic acid in 2006. Special request – Bethany organized, paid and forwarded to IF some local customized materials per IF request.


Bethany was able to achieve all of the original, planned goals of the funding during 2004.The greatest new programme achievement of 2004 was the organization and implementation of a parent support group meeting in Nairobi by the two IF funded nurses. The Bethany nurses acted as facilitators with the officials of the group being parents themselves. There are now 16 active members. The group is in the final stages of formal registration as a non-profit organization in Kenya. The name of the group is the Spina Bifida and Hydrocephalus Association in Kenya (SBHAK). Since the work load has grown tremendously, a fourth Spina Bifida nurse has been appointed. Each of the nurses has a different role: community liaison, assistance and management of Spina Bifida and Hydrocephalus patients and one supervisor nurse (Source: IF Interim report 2006 and IF).

Zambia: Cheshire Homes CBR of Lusaka RHF/IF Regional Programme activities The Cheshire Home is a rehabilitation centre for children with physical disabilities. Cheshire Homes CBR collaborated with the University Teaching Hospital in Lusaka for neurosurgery. The collaboration with IF started in 2000 and in 2008, Beit CURE Hospital took over and started providing paediatric orthopaedic surgery and neurosurgery. In the initial agreement with CBR, Chhabra shunts were sent to the University Teaching Hospital (UTH). CURE took over the collaboration with CBR mainly because RHF/IF and have had a good and successful working relationship with CURE Children’s Hospital in Uganda. Also there appeared to be no coordination regarding referral or follow up of patients with Spina Bifida and Hydrocephalus. Referral of patients seemed to be mainly through the paediatric clinic. Other reasons for discontinuing the activities with CBR were that follow up was difficult for many of the patients with shunts because of the large size of the country, with Lusaka being the only centre for managing hydrocephalus26. Dr Warf expressed concerns regarding varied capabilities of the paediatric surgeons in terms of shunt operations and recommendations to change shunt type to Chhabra shunts (cheaper and just as effective as more expensive ones). He also expressed concerns regarding data collection that was inconsistent and recommended measures to improve this. He recommended that IF funds a SBHC nurse (or possibly clinical officer or physiotherapist) for UTH. In 2007, during the project visit to Zambia, the following took place:

The CURE Hospital has a full-time orthopaedic and neurosurgeon and one Spina Bifida nurse. Both the Spina Bifida nurse and a representative from CBR attended a workshop on Bowel management in Kampala (May 2007, and extra training on Spina Bifida follow up and CIC in Kijabe (August 2007).

The Cure Hospital planned out-reach clinics: two in the Copper belt region, 3 in the Southern provinces, and one in Kabuwa. World Vision is a main partner to host the out-reach clinics, well as other partners. Out reach clinics are served by doctors and nurses. Cure plans to teach Nurses in hospitals where out-reach clinics take place to ensure good care of the local target group.

26 Report from Site visit to Lusaka, by Dr Warf 2004


The hospital is well equipped with a mobile ultra sound machine, ETV equipment with one flexible scope and high standard post operative care equipment for 3 beds.

Cooperation with Lilianefonds has started and they are already funding some patients. They have a mediator on the spot. IF will advise the Lilianefonds in the Netherlands to anticipate care to this new facility by increasing the funds for Zambia. In 2007, ETV was being considered as an option for children with Spina Bifida and/or Hydrocephalus, owing to a higher risk of shunt infection in resource-poor settings. One of the neurosurgeons Dr. Sichzya, is willing to train the other health personnel.

According to the Project Report (2007), collaboration between UTH and CURE Hospital remains good mainly because the neurosurgeon at CURE is working at both hospitals. He is fully paid by CURE Hospital. RHF/IF is the main donor in Spina Bifida and Hydrocephalus related activities.

Sudan: Cheshire Homes Khartoum RHF/IF Regional Programme Khartoum Cheshire Home is a rehabilitation centre for children with physical disability. The collaboration between RHF/IF and Cheshire Homes in Khartoum first began with a field trip in 2002, which later resulted in an MOU in 2004. Most of Cheshire Home’s work is on disabled children in general and the Spina Bifida and Hydrocephalus component is catered for by RHF/IF. The focus of the project in Sudan is to gain expertise in training and teaching parents and children about Spina Bifida and Hydrocephalus, providing information about CIC and neurogenic bladder management. The training of parents and co-workers involved prevention and awareness-raising for young mothers and girls to use folic acid before conception, and discussions about the occurrence of spina- bifida and hydrocephalus were addressed. Surgery follow up, monitoring of shunts, special care of children, introduction to CIC for new clients and training packages for co-workers and parents were provided in 2004.

For the Parent’s Monthly meetings, issues such as prevention of Spina Bifida and Hydrocephalus were discussed with young mothers, girls and the emphasis being on the use of folic acid before conception. Parents were encouraged to participate in these meetings and sharing their experience with the others. By the end of 2004, 30 families were involved in the parents group (Spina Bifida Association) CIC was introduced to the new clients and old patients were monitored. There were 30 children on CIC oxybutonine and 11 orthopaedic surgeries (Operational report 2004). There was training provided in cleaning of children to prevent bed sores.

In terms of achievements, children from poor families were able to receive financial assistance to cover surgery, medicines and transport for travelling to meetings or consultation. There was good follow-up on capacity building of parents and health personnel. There was also increased awareness in families and other collaborating NGOs refer cases to Khartoum Cheshire Homes27.

In terms of RHF/IF Project staff, since 2004, there has been 1 Spina Bifida nurse and 1 Project coordinator. The number of project staff remained the same in 2008.

27 Operational Report to IF from Sudan, 2004


Although, there were management conflicts which resulted in the person leaving the position linked to the project (Source: narrative reports and IF).

Malawi: Queen Elisabeth General Hospital RHF/IF Programme activities: The collaboration between RHF/IF in Malawi began in 2000 year); with the partner organisation Queen Elisabeth Central Hospital (QECH) which is a teaching hospital. The focus of the project in Malawi is prevention, identification, intervention, rehabilitation, education and training28. Activities included training of clinical officers (under the supervision of a neurosurgeon29) thus developing expertise to insert shunts30, which is significant in that Malawi (as of 2007 Annual report) had no neurosurgeons to perform this procedure and an expatriate doctor was the only one who could do it, making access to clients that much more difficult. This training and others of the kind ultimately improve access to early intervention; research, in which QECH kept a register of all congenital anomalies in order to establish the incidence of SBHC. This was a first attempt in the region according to programme reports from 2001.

In 2002, 35 shunt operations were carried out. Just as in Uganda, Malawi has a disability policy that seeks to fully integrate Persons with disabilities focussing on health, treatment, rehabilitation and education, while the RHF/IF project provides surgical care, pre and post operative care and training in CIC and bowel management31. Hydrocephalus is considered very common and attributable to meningitis / ventriculitis in infancy (finding attributed to Dr. Warf in 2007 Annual report). The participation in such a programme was therefore very important for Malawi and with significant effects, especially considering that Dr. Borgstein who was carrying out the surgeries had to hand over the coordination of the project.

In 2006, 11 children were following CIC bowel management and training (Narrative report to IF, 2006) Conclusion: In this section, we have shown that the projects in the six countries started at different time points in different settings in terms of the type of health systems available and available personnel. We have also seen that there has been a steady increase in the number of surgeries, number of children identified with Spina Bifida and Hydrocephalus, number of personnel trained and parent groups formed and supported. In all of the partner countries, Disability policies are in place and the projects can be placed in this context. More specifically for each country:

Specifically for each country: Uganda:

• Uganda: CURE Children’s Hospital became the centre for excellence and referral for neurosurgery in Uganda.

• Uganda: Katelemwa has become an expert on rehabilitation and parent groups

28 2007 Application 29 2001 Report 30 Training of 1 clinical officer resulted in him performing 25 shunt operations according to 2001 programme report, which influenced further training of clinical officers. 31 2007 annual report


The Constitution of Uganda formulates the rights of persons with disabilities among which is Education, Medical care and Rehabilitation and Support services. Through the project in Mbale, patients have been given direct surgical care and follow-up. The project in Katalemwa provides pre- and post operative care and training. Contacts with other organisations (OURS, Mbarara; AVSI that is linked to IF Child Help Belgium is primarily in North Uganda) are initiated to improve the follow-up after the surgery. Kenya:

• Kenya: Kijabe became a referral hospital for neurosurgery and training in Kenya The proposed National plan of Action aims at improving and promoting participation, equality and empowerment of people with disabilities in Kenya. The project in Kijabe, Kenya provides surgery and extensive follow-up. Kijabe has become the referral hospital for Spina Bifida and Hydrocephalus in Kenya. Children, parents and professionals are trained in this well functioning hospital. Tanzania:

• Tanzania: Moshi became an expert on parent groups In 2000 the Tanzanian Government adopted PRSP, but this was changed in 2005 to National Strategy for Growth and reduction of Poverty (NSGRP).Employment prospects for workers with disabilities are limited by initial barriers that they may have faced as children and young adults in acquiring a good basic education, vocational skills training in higher education. The Continence Management trainings, both in Dar es Salaam and Moshi, allow children to get the proper education and training to empower them later in life. Children with Spina Bifida and Hydrocephalus can also benefit from on-going work on inclusion education in Tanzania and Zanzibar. Sudan:

• Sudan: Khartoum became an expert on continence training and parent groups There are two specific instruments in favour of disabled persons, one being the Act on Welfare and Rehabilitation of Disabled Persons. In this regard, Khartoum Cheshire Homes provides referral to treatment, rehabilitation and training of children, parents and professionals. Malawi:

• Malawi: Focuses on shunting and training of Clinical Officers and shunt insertion In Malawi, the aim of the national disability policy is to fully integrate persons with disabilities in all aspects of life. Priority areas among others are: Health, Treatment and, Rehabilitation, and education. As shown, the project in Blantyre provides surgical care, pre- and post operative care and training in continence care (both CIC and bowel management). Zambia:

• Zambia: is building its capacity for ETV surgery The officially recognized disability policy in Zambia is expressed in law and in guidelines adopted by a national disability council. The project in 2007 provided with medical material for treatment of children with Spina Bifida and Hydrocephalus. Collaboration with the new Cure Beit Hospital, brings more expertise to Zambia (also a skilled neurosurgeon fully equipped for ETV (source: RHF Annual Report to Atlas Alliance 2007).


Table 2: Status cooperation with RHF/IF – partner projects (Source: IF, Belgium)

Country Start cooperation Name partner Renewed MoU Date signature

Tanzania – Dar es Salaam

Start cooperation 1998 ART-CBR Program (CCBRT)

2001 shift to CCBRT Disability hospital

20/2/2009

Tanzania – Moshi Start cooperation 1998 CBR Kilimanjaro (CCBRT)

Dar es salaam

Kenya Start cooperation 1998 APDK, Association for the Physically Disabled in Kenya

1999 shift to AIC Bethany Crippled Children’s Center of Kenya

13/12/1999

2005 shift to Bethany Kids at Kijabe Hospital

3/2/2009

Uganda – Kampala Start cooperation 1998 Cheshire Homes Katalemwa

3/2/2009

Uganda- Mbale Start cooperation 2000 CCHU

4/2/2009

Uganda – Mbarara Start cooperation 2008 OURS

31/1/2009

Malawi - Blantyre Start cooperation 2000 Queen Elisabeth General Hospital

Zambia – Lusaka Start cooperation 2000 Cheshire Homes CBR, Lusaka

2008 shift to Beit CURE hospital

1/2/2009

Sudan – Khartoum Start cooperation 2004 Cheshire Homes Khartoum

30/1/2009

3.3 RHF/ IF Programme Management and Reporting This section summarizes most of the literature referring to programme management and reporting, received by the Consultants. The Consultants have had access to crucial documents such as Annual reports (1998-2008), Management reports, Progress reports, from IF and IF Program partners, Evaluation reports (external evaluations 2002 and 2006 and internal evaluation 2005), and reports.

IF General Board Structure IF is registered as an international NGO according to Belgian Law. The Executive Board is elected biannually at the General Meeting, although the General Meeting is held every year. These meetings are held in different countries.


External auditors control and approve the organization’s financial statements. There are 9 board members with the following positions: President, Vice President, Treasurer, and 6 other board members. In addition, there are 3 staff members. Within the organization, there is a Development Cooperation Working Group under the Regional Programme. Structure of Development Cooperation Working Group Within IF, there is a Development Cooperation Working Group which comprises of the IF Board including the President and Vice President of IF, the IF Project Manager for Development Cooperation, Consultants/Experts, RHF representative, including other donor representatives.

RHF General Board Structure RHF is a registered Association in Norway, according to Norwegian law. The RHF Board structure consists of nine members equally divided amongst people with Spina Bifida and/or Hydrocephalus and parents whose children have the disabilities. In addition to the board, RHF has 5 different working committees. These being: The Contact Person Committee, The Information Committee, The Habilitation Committee, The International Committee, and The Teenage and Adult Committee. The International Committee is involved with international development cooperation. It is also responsible for the activities in developing countries in collaboration with IF and Atlas Alliance. These activities include conferences, lectures about various sides of Spina Bifida and Hydrocephalus, international policies and discussions. Roles of the IF Development Cooperation Working Group President of IF – represents the final authority (Board). The Project Manager keeps regular contact with donors and other stakeholders, approves annual budget and represents the IF Africa Programme within the IF Board and General Meeting. The Project Manager is also responsible for supervision and prospecting new projects; for planning and budgeting of the overall project in collaboration with IF, providing advice, supervision and control of the projects, follow up of activities and accounting of projects and providing advice to the IF board. The Project Manager reports to the General Manager and Development Cooperation Working Group. National Spina Bifida and Hydrocephalus Co-funding Organization (RHF) The organization collaborates with IF to produce applications for donor funding. It has contact with the donor, and controls the accounting, function and reporting to donors. It assists in support of parent groups in the projects, contributes towards supervision and evaluation – making their expertise and knowledge available to the projects. IF Project Manager: The IF Project Manager is under the final authority of the IF Board which is represented by the President. The tasks include central administration of all planning and reporting, checks approval of funds from projects, prepares dossiers to donors, including project descriptions. The Administrator coordinates reporting to donors and central accounting. Consultants or Experts: Consultants or Experts are people whose professional skills can be utilized on a temporary basis by the President of the Board or by the IF Development Cooperation Working Group on a voluntary basis. If sent on a mission, costs are covered. The role of the consultants is to


provide advice, training and evaluation in the projects. The Consultants or Experts report to the Development Cooperation Working Group or Project Manager. Financial Management and Reporting Financial management system requirements for grantee organizations of IF are addressed in the Memorandum of Understanding (MOUs) between IF and Grantee Organisations. Grantee organizations are expected to have certain systems, policies, and procedures in place for managing their own funds, equipment, and personnel. A system of clear roles and responsibilities are expected to be defined in each grantee organization, and should include the financial management systems. These systems include, but are not limited to, accounting, internal controls, and budgetary controls.

The MOUs looked at highlight the rationale, objectives, duties of IF and the engagement of the partner organisation in both administrative and financial terms.

International Federation for Hydrocephalus and Spina Bifida (IF) The IF budget has a specific format that it follows. The MOUs stipulate an annual budget signed between IF and the partner organization. IF provides specific formats for their reports which are provided bi-annually. Remittances to the partner organizations are made in two disbursements; the first is released after the submission of the annual (end of year) report and the second disbursement after the submission of the 1st Bi-annual report which is approved by IF. IF funds have a different account (Euro account for receiving the grant and the partner country’s currency account for operations). IF emphasizes that the final accounts reports are sent converted into Euros. IF funds are audited separately the copy of the audit report is then attached to When the annual budget is less than 10.000 €, no separate account or audits are required. Original invoices and receipts must then be sent directly to the IF office. The approved budget is to be disbursed in 3 parts: 40% after approval of the annual budget, 40% after the half yearly revision. The balance will be paid after receiving and accepting the final report and with the first instalment of the next year.

1. The project sends in a financial report AND a narrative report on a bi-annual basis, with the following deadlines:

a. Deadline 1st report: 1 August of that financial year b. Deadline final report: 1 February of that financial year

2. Financial reporting: a. The IF partners use the attached a financial management form for financial

reporting and explanatory notes. Budget revisions requests are possible when the IF partner sends the bi-annual report. The proposed new budget is specified.

b. Accompanying with the report, the project is expected to send an invoice for the expenditures made in the reporting period. Original receipts will remain at the project.

c. Narrative reporting: IF provides a narrative form for narrative reporting and this reporting takes place twice a year.

Non-compliance by the partner organisations to the requirements stipulated in the budget, management and financial procedures, results in the transfer of funds halted, until the required documentation is received by IF.


3.4 Progress to Date It should be noted that Regional Programme on treatment and rehabilitation of children with Spina Bifida and Hydrocephalus in six African countries has been supported by Norad in Norway and SHIA in Sweden, only for Tanzania. Norad is the main donor for the RHF/IF Regional Programme followed by SHIA. According to IF Annual Report for 200732, Norad provided 84% of the funding for development cooperation and SHIA provided 16%. The Regional Programme received the amount of NOK 15,310,055 from the period 1998 to present from both Norad and Atlas Alliance (refer to Table 3). Table 3: RHF/IF Regional Programme overview of funding from Norad and Atlas Alliance during period 1998 to 2007 Year Donor Amount in NOK

1998 Norad & NABP 454,231 1999 Norad & NABP 934,000 2000 Norad & Atlas Alliance 1,061,400 2001 Norad & Atlas Alliance 1,079,775 2002 Norad & Atlas Alliance 1,895,832 2003 Norad & Atlas Alliance 1,786937 2004 Norad & Atlas Alliance 1,986,292 2005 Norad & Atlas Alliance 2,035,194 2006 Norad & Atlas Alliance 2,035,194 2007 Norad & Atlas Allianse 2,041,200

Total 15,310,055 Source: Annual reports to Norad and Atlas Alliance (1998-2007) Note: Atlas Alliance contributes to approx. 10% of the funding while Norad provides the remaining 90% The RHF/IF Regional Programme can be divided into three phases starting in 1998 up to present. These phases being: PHASE I: From period 1998-2002 During this pilot phase, both RHF/IF collaborated with The Norwegian Association of the Blind and Partially Sighted (NABP) the reason mainly being due to blindness being one of the effects of Spina bifida and/or Hydrocephalus. During this phase IF entered partnerships with partners and in Kenya, Tanzania, Uganda, and Malawi and signed MOUs (refer to Table 2, Section 3.2). In 1998, the pilot project received NOK 454,231 from Norad. The Pilot project’s goal was to support and facilitate operations for a total of 1000 patients during the five year period i.e. 200 patients per year for all the projects.33 These partners being: 1. Tanzania: CCBRT Moshi 2. Tanzania: CCBRT Dar es Salaam 3. Uganda: Cure Hospital in Mbale 4. Uganda: Katalemwa Cheshire Homes for Rehabilitation 5. Kenya: Kijabe and Bethany Kids 6. Zambia: CCBRT

32 IF Annual Report 2007 entitled: ”Tomorrow” 33 Approved budgets by IF (2001-2008)


In 1999, the amount of support to the RHF/IF almost doubled to NOK 934,000 from 1998. The amount of support increased progressively (refer to Table 3), and the Programme focused on empowerment of parents and newly establish parent groups. There was a consolidation in the existing 7 projects (according to Narrative report to Norad 2002)34 . Both ETV training, and CIC training were started, improved follow up, distribution of folic acid to target group, education via leaflets (parents, professionals, nurses, social workers, and protocols (neurosurgeons, paediatricians, nurses) and videos. Monitoring and Evaluation All programme partners were obliged to keep an updated file on all children in the program – medical and follow up. The partners have submitted budget applications and filed reports generally on schedule and submitted annual plans. RHF/IF have in turn also submitted budget plans and reports to Norad and Atlas Alliance and maintained the necessary deadlines. RHF has improved its capacity in terms of development cooperation since joining Atlas Alliance. RHF/IF carried out an external evaluation in 2002 for the first 5 years of the Regional Programme. The general conclusion was that there was a profound need for the services that the RHF/IF Regional Programme for Early detection, Treatment and Rehabilitation of Children with Spina Bifida and Hydrocephalus was providing as this expertise was unavailable prior to this intervention. According to the evaluators, patients were previously standing in line for assistance. Also all elements in the treatment and rehabilitation of Spina Bifida and Hydrocephalus had improved with some projects better excelling in certain areas than others. For instance, some partners were better at CIC, while others were strong with training of health personnel. The evaluation emphasized the importance of exchange of experts between centres was already taking place e.g. workshops in June 1999, training session in March 200135.The total expenditure for this phase was NOK 5,425,238. PHASE II: From period 2003-2006 IF started a collaboration with Sudan (MOU meetings in 2004). Norad largely funded this phase and Atlas Alliance as well. RHF joined Atlas Alliance in 2000 in an effort to further improve its capacity. Joining Atlas Alliance, which is a foundation of Norwegian disability organizations working with projects with partners in the South, meant access to courses and like-minded organizations. No further partners were added. RHF/IF carried out an external evaluation of the Regional Programme in 2006, and the conclusion was that there was a lack of information at different levels. For instance, there was a lack of information at different such as at the parents’ level, at the level of the professionals and local service providers. There were also problems with follow-up of patients with Spina Bifida and Hydrocephalus. There was a big loss in follow-up of patients due to high transport costs to hospitals, and a also cut-back on support to follow-up undertaken by social workers to rural areas. In terms of prevention and folic acid, there was a lack of written information and general misunderstandings on the part of the target group. With regard to schooling and social inclusion, this was an area of concern for most parents. The total expenditure for this phase was NOK 7,843,617.

34 Narrative report to Norad 2002 35 IF External Evaluation in 2002


Table 4: Showing funding disbursed from RHF/IF to partners during period 2001-2008

Partner Funds from RHF/IF in Euros

CCBRT in Dar es Salaam 121,489 CCBRT in Moshi 98,648 Bethany’s in Kijabe 179,017.82 Katalemwa in Kampala 100,834.14 CCHU in Mbale 110,011 QEGH in Blantyre 115,335 CBR in Lusaka 3,492.14 Khartoum CH 33,929.12 Total 762,756.22

*Source: Budget reports from partners to IF The total amount of funding disbursed to the partners by IF during the period of 2001-2008 is 762,756.22 Euros or NOK 6,841,923.29 (assuming current rate for 1 euro = 8.97 NOK)

PHASE III: From 2007-2009 During phase III, the RHF/IF programme continued to receive funding from Norad and Atlas Alliance based upon performance each year. According to documentation, MOUs were renewed (refer to Table 2). In 2007, RHF/IF visited the projects in Mbale, Kampala, Kijabe, Dar es Salaam, Lusaka and Blantyre. 36 During this phase, one more partner has been added to the list of partners in Uganda -the partner being OURS in 2008. Sustainability with regard to funding and has been an aspect that RHF and IF have been concerned about and steps to address this aspect are being taken. As of 2009, the total expenditure for this phase is NOK 2,041,200. Knowledge on treatment and care - objective 1 To ensure that knowledge regarding the Improving of the basic local conditions for the treatment and rehabilitation of children with Spina Bifida and Hydrocephalus is accessible, thus ensuring the best possible medical care and rehabilitation in each specific country and situation, and ensuring sustainable and affordable health care for the target group The RHF/IF Programme had access to staff whose salaries were covered by the RHF/IF programme, while other staff had their salaries covered by the partner NGOs. The role of the RHF/IF staff was to provide expertise pertaining to Spina Bifida and Hydrocephalus where appropriate. From 2003-2008, the RHF/IF programme started out with a few staff and as the programme evolved and expanded, more staff were added.

Conclusion: The number of RHF/IF programme staff started out with a total of 15 staff in 2003, and by 2008 had a total of 28 programme staff in all the six countries due to the capacity building support of local personnel.

Treatment of children with Spina Bifida and Hydrocephalus – objective 2 The RHF/IF had the goal of treating 200 children with Spina Bifida and Hydrocephalus per year over a period of the first five years. During the course of the implementation of the RHF/IF Programme there was an increase in the number of children being treated for Spina

36 Annual report to Atlas Alliance, 2008


Bifida and/or Hydrocephalus, number of parent groups, and preventive interventions (folic acid to women of child-bearing age). Below is a sample of activities from all partners. CURE Mbale Hospital According to CURE Mbale Hospital, between 2000 and 2009, there was total of 3581 children who were operated on for Spina Bifida and Hydrocephalus. Katalemwa Cheshire Homes In terms of the RHF/IF Project, in 2003, 179 children with Spina Bifida and Hydrocephalus were supported at Katalemwa, while in 2008 there were 464 children supported. The rehabilitation activities expanded and collaboration with OURS in Western Uganda was started in 2008. For parent workshops and training, in 2003 there 46 workshops and training and in 2008, the number increased to 198. Moshi Associations are registered in both Dar and Moshi, with inspiring examples of parents helping each other out and participating in training, especially in CIC and bowel management. This is an area that is very important for parents and for children living with the effects of SBHC. In 2006 alone, there were 7 parent meetings organized and teenagers with Spina Bifida elected on Parents group committee. For social inclusion, 2 children started school due to continence training. Khartoum Cheshire Homes By the end of 2004, 30 families were involved in the parents group (Spina Bifida Association) CIC was introduced to the new clients and old patients were monitored. There were 30 children on CIC oxybutinone and 11 orthopaedic surgeries on the foot (Operational report 2004) Kijabe at Bethany Kids In 2006, 467 children with Spina Bifida and Hydrocephalus were operated at Kijabe. For parent meetings, 31 meetings took place with the 4 parent groups located in Mombasa, Nairobi, Naivasha and Joyform. Prevention – Bethany purchased approximately 70,000 folic acid tablets which were distributed at clinic locations and to patient parents/guardians at discharge from the hospital. 843 mothers received folic acid in 2006. CCBRT Dar es Salaam For 2006, in order to reach more children from rural areas, mobile clinics were arranged 3 times a month in 4 districts. All mothers received folic acid, 107 children followed CIC and bowel management37. Queen Elisabeth National Hospital There are no neurosurgeons in Malawi, expatriates only, thus Clinical officers are trained in placement of shunts. In 2002, 35 shunt operations were carried out and in 2006, 11 children attended CIC and Bowel management training.

37 Narrative report to IF for Dar, 2006


Training and research – objectives 3 and 4 The focus on medical intervention has seen the implementation of a number of workshops for professionals (Table 5). The Endoscopic Third Ventriculostomy (ETV) procedure has had good results and is considered more appropriate because it does not require as constant a process of monitoring as the shunts so that life threatening failures are all but eliminated.

Table 5: Training/ Capacity building events

� Year and where

� Who � Type of training

� 2001 � Neurosurgeons and neuro paediatricians of all local projects

� Endoscopic Third Ventrilocustomy (ETV) Workshop

� 2001 � Field workers ; Parents � Special education day with messages and exchange of knowledge and information on SBHC

� 2001 Kijabe and Mbale

� Nurses (2 in Kijabe, 1 in Mbale)

� Taking care of Children with Spina Bifida in Hospital

� First initiatives for meetings of parents started

� 2001 Kampala

� 1 social worker

� Mothers

� Home based follow up of children with SB&HC

� Teaching nutrition, prevention, hygiene; general information on SBHC

� 2002 in Mbale

� …. � Efficacy of ETV as a Primary Treatment for Hydrocephalus in a Developing country

� Comparison of Long term outcomes using the Codman Microprecision Shunt vs the Chabra Shunt

� Post ETV Comprehensive Head Wrapping in infants with open cranial sutures

� Training and assessing Competence in ETV among Non-Neurosurgeons

� Evaluation of simple Urodynamic assessment and prophylactic CIC in a Developing country


4. EVALUATION METHODOLOGY In this section, the Consultant presents the Approach and Methodology used during the Evaluation. This includes the overall objectives of the Evaluation, the phases of the Evaluation, the Approach and Methodology and Findings.

The purpose of the methodological and desk review evaluation of the RHF and IF supported regional Program for Early Intervention, Treatment and Rehabilitation of children with Spina Bifida and/or Hydrocephalus is to assess the relevance, effectiveness and sustainability of the Regional program in the various countries i.e. Uganda, Kenya, Malawi, Sudan, Tanzania and Zambia.

According to the Terms of Reference (Annex 1), the Consultant will review how the organizations RHF and IF contribute to achieving Programme objectives that are agreed upon with the local partners in the South. The specific focus will be on the working methods, roles and responsibilities of all stakeholders and the value added of RHF and IF as donors and partners. The Evaluation will assess the working methods of both organizations and also gain a view on the medical impact of the program on the target group and also the support to parent groups. An important aspect of this Evaluation will be to draw lessons from the Lessons learned in order to serve as a basis for decisions regarding future work and strategies of RHF’s and IF’s engagement in the South. Consultations in Belgium and the Country study in Uganda were undertaken from 20 April to 8 May 2009 (Annex 2).

4.1 Approach The Evaluation was implemented in four phases:

Phase I: Methodological and Desk Review

Phase II: Country Study in Belgium and Uganda

Phase III: Analysis and reporting Draft Final Report

Phase IV: Feedback and Final Report

Phase I - Methodological and desk review: End March – 20 April 2009 In order to gain an overview of the Regional Program activities in all six countries of operation listed, the Evaluation Team undertook a desk study review of the crucial documentation from IF and RHF. Evaluation instruments were designed to target RF and IF partners, and staff and volunteers, parents who have children with Spina bifida and/or Hydrocephalus and parent groups for the five countries. The approach and methodology for the Country study in Uganda was elaborated upon. Consultations were carried out in Oslo with the Board Chairperson, and the Development Cooperation Committee of RHF, Atlas Alliance’s Deputy Director and Political Advisor, and a an Advisor in Norad.


Phase II – Consultations in Belgium and Country Study in Uganda: from 20 April to 8 May 2009 The Team Leader met with the IF Project Manager and President of IF in Belgium for further consultations. In Uganda, the Evaluation Team conducted interviews with various stakeholders and key informants linked to the Regional Programme. This was in order to gain insights into the different stakeholders own assessment and perspectives of the Programme and their experiences i.e. partnerships and linkages that have developed and how these linkages work, strengths and weaknesses of the partnerships and value-added and ability to network and cooperate with partners in Europe and the South. The Evaluation Team conducted interviews with various stakeholders and key informants linked to the Regional Programme. The Team visited IF partners: Katalemwa Cheshire Homes of Kampala and CURE Children’s Hospital in Mbale, IF Child Help Belgium staff, Ministry of Gender, Labor and Social Services, Norad, AVSI and had a discussion with Benedictine CBR programme (refer to Annex 2 for details). The purpose of the field study was to assess the Programme, goals and objectives from the partner’s perspective. A sample of parents with children who have Spina Bifida and Hydrocephalus and a parent group were interviewed, alongside other community based structures the Programme will have linked up with. Phase III - Analysis and reporting: 9 May to 31 May 2009 Following the Country study, the data was analyzed and interpreted and the Draft Final report submitted to RHF and IF for comments. Phase IV – Feedback and Final Report: June 2009 Following feedback from RHF and IF, the Final Report was completed and presented to Norad.

4.2 Methodology The Evaluation team used a variety of data collection methods according to the practical possibilities as provided below:

• Desk studies and literature reviews of crucial documents provided by IF, RH, IF partners and bibliography covering the period of 1998-2008/9. This includes long-term plans, annual project plans, reports, printed materials, activity reports, Evaluation instruments/questionnaires targeting various stakeholders were developed and used both in the web-based surveys and field surveys.

• Web-based surveys and e-mail questionnaires: The Evaluation team used a combination of web-based surveys and e-mail questionnaires targeting IF partners in the Programme - management, medical staff and a sample of parent groups in Kenya, Malawi, Tanzania, Sudan, Uganda and Zambia. The database of contacts was provided IF.

• Structured interviews of key informants (including IF partners i.e. Katalemwa Cheshire Homes in Kampala, CURE Childrens’ Hospital - medical and management staff, a sample of parents and parents groups, government officials, representatives of other NGOs (CURE, CBM) using questionnaires.


• Focus group discussion: During the field study, the Evaluation Team had a focus group discussion with a parent group at Katalemwa Cheshire Homes.

• Structured observations:

The Evaluation Team visited the laboratories, operating theatres and premises at CURE Childrens’ Hospital in Mbale. At Katalemwa Cheshire Homes in Kampala, the Evaluation Team visited the mobility aids workshop and physiotherapy room, in addition, the opportunity to observe a clinic in progress at Katalemwa with medical doctors from CURE. This is CURE’s outreach in Katalemwa which is one aspect of the collaboration between the two partners.

4.3 Main Findings

4.3.1 Introduction This section sets out the Consultant’s main findings and analysis in accordance with the requirements of the Terms of Reference. We thus examine the criteria of: Programme relevance, effectiveness, impact and sustainability of the RHF/IF supported Programme and the overall assessment including challenges influencing Programme implementation. Background information on the partnership for Spina Bifida and Hydrocephalus indicated a number of reasons for late or no treatment. These reasons included lack of awareness, guilt, negative responses like hiding children away, inadequate information and action protocol with regards to referrals by health professionals so parents are left at a loss since patients are not referred to specialised hospitals. Care is quite expensive and transport costs are very high to get to the places where medical and other interventions can be accessed. In addition to all these, there is a dearth of neurosurgeons in all the countries in which the Programme is being implemented.

4.3.2 Programme Relevance Programme relevance: is defined as to which extent a development intervention conforms to the needs and priorities of target groups and the policies of recipient countries and donors.

The Programme is profoundly relevant to the needs and priorities of the target group (children with Spina Bifida and Hydrocephalus, their parents and primary caregivers, and to the professionals working in neurosurgery for Spina Bifida and Hydrocephalus. Furthermore, the RHF/IF supported Programme is also in line with the Disability policies in the six partner countries and that of Norad’s policy on inclusion of disabled people in international development (refer to Section 3.2). The programme was set up with a number of broad aims which include improving the quality of health care services and follow up of children with Spina Bifida and or Hydrocephalus up to the family level; improving the quality of life of the affected children by supplying shunts, educating parents and health professionals, improving the level of knowledge at the community level about treatment and prevention of SBHC and therefore reducing the incidence of children ‘born with the diagnosis’ and finally helping to establish parent groups in each project area.


This last aspect is expanded over the years to include development of the groups and their active involvement in a number of activities all aimed at providing better support to children and their parents as well as addressing issues of inclusion at the community level.

In assessing the importance and relevance of the work done by RHF/IF supported Programme in Eastern, Central and southern Africa as well as Sudan, we need to ask ourselves, how many children with Spina bifida and Hydrocephalus would have died without this support? Indications from the literature is that on average, 7538% of children with (Hydrocephalus) would die by the age of 9 without intervention; yet this intervention was hardly forthcoming and its quality and effectiveness was questionable before the project in many of these areas. We also need to examine how children survive and live in a meaningful state within their families as a result of interventions supported by the project interventions within the full support of the partnership.

Many professionals have had training and mentoring, enabling them to alleviate some of the life threatening as well as more difficult aspects of living with the effects of Hydrocephalus and Spina Bifida provided through or as a result of the partnership or as a complementary aspect of the partnership. Information about services which is a focus of the partnerships, though far from adequate has enabled many more families to have lifesaving information provided in time to take decisions regarding children affected by the condition instead of resignation and basically waiting for children to die while coping with practical difficulties as best they can. It is also important to examine the negative attitudes and practices and how these are being addressed practically and through information generally and specific to parents and care givers. How many homes have been / are being broken, livelihoods shattered due to lack of knowledge about how to cope and now, how many more children are able to enjoy their lives in their families together with peers? How many abandoned single mothers are identifying ways of coping with the support of their peers and project interventions? The lack of access to services is also addressed through the project.

In terms of social inclusion, many children with Hydrocephalus and Spina Bifida have / had no access to formal school and there are no or limited alternative routes for them to access education. Reasons are varied, including mobility / accessibility of the school physical and learning environment, poverty amidst high costs of treatment and management, the effects of the disabilities associated with Spina Bifida and Hydrocephalus, mainly bowel and urine incontinence for Spina Bifida. Social inclusion for the children therefore cannot be an undertaking of their families alone but need multi-disciplinary efforts at different levels, including local governments. An effort is being made in this regard to reach out to local authorities, through parents groups and also to partner with other organisations e.g. NFU, within the Atlas Alliance family but this though promising is very much in its infancy. Nevertheless it is a relevant step to address the increasing need for education now that the medical aspects are increasingly being addressed for many children.

The Programme addresses the negative attitudes, provides information and practical support to parents and caregivers, including professionals, for instance, CCHU sends letters to health professionals about referrals and appeals to them to treat children with HC for common infections instead of sending them to Mbale and thus risking their lives through delay when these infections, such as malaria, could be treated like for any other children.

The partnerships have enabled a wider access to supportive services for instance; surgeries for needy children are sometimes paid for by other ‘partners of the partners’ e.g. Katalemwa

38 Application document


and Lillianefonds partnership for surgeries and other support such as education within their wider collaboration for children with disabilities. It would appear therefore that a complementary network has been developed and is still emerging that has at its centre, the child with Spina Bifida and Hydrocephalus and his/her family. The RHF/IF Regional Programme managed to adapt as the needs became clearer, for instance, Mbale CURE hospital moved from a process that was mostly medical to ‘total care where knowledge and training became more important’ with a realisation that ‘parent involvement’ was ‘the best guarantee of success’.

4.3.3 Programme Effectiveness Programme effectiveness: is defined as the extent to which a development intervention has achieved its objectives taking their relative importance into account. The effectiveness of the programme can be addressed in terms of how well it achieves the objectives it set out to address. This can be looked at in terms of early intervention, prevention and management of Spina Bifida and Hydrocephalus as well as social inclusion aspects. The RHF/IF Programme has a holistic approach, meant to support the clients both medically socially as well as influence the environment in which they live. Prevention Prevention by the RHF/IF Programme can be viewed from two aspects, the first being prevention of the occurrence or recurrence of Spina Bifida and Hydrocephalus. Actions here include information about proper nutrition, supplementation of diets with folic acid and improvement of conditions to stop infections during birth, including raising awareness about harmful practices. The second aspect of prevention is connected to timely and appropriate management to prevent further complications medically. Indeed a third level of prevention could be identified in terms of social aspects, i.e. prevention of social exclusion, prevention of infections through appropriate management of the complications related to Spina Bifida and Hydrocephalus.

The RHF/IF programme handles prevention through the dissemination of information, done by its partners; through mass media e.g. CURE has a communications drive, through leaflets and sensitisation sessions, as done by Cheshire Home Katalemwa, and through word of mouth at the outreach sessions and by parents, also through parent groups. Parents of children who have received medical and other care are important advocates for the second aspect of prevention, in collaboration with a spectrum of medical and other personnel, including surgeons, nurses, social workers, occupational and physiotherapists, orthopaedic technicians and other actors such as funding institutions which support the work of the partner organisations.

Early Identification The First 5 Years: Landmarks in the partnership between RHF/IF and projects/ partners in the 6 countries (Evaluation from 2002)

At the Health/Partner Facilities:

Improved conditions for surgical and other medical care: protocols for treatment at a number of levels to all projects

Introduction of Endoscopic Third Ventriculostomy as alternative treatment for Hydrocephalus in developing countries

TVS equipment installed in Mbale in 2000

Improved care and lower infection rates

Training technical staff led to increased numbers of children assisted and shorter waiting lists

Better knowledge on the prevalence/incidence of the diagnosis

Spina Bifida nurses coordinate work related to child and families

Education via leaflets (to parents, mid level professionals, nurses, social workers), protocols (neuro)surgeons, paediatricians, nurses) and videos (general use)

Improved training for professionals at all levels

A protocol for Neurogenic bladder management implemented in all projects.

Awareness about the available treatments among nurses and local health services and hospitals

Distribution of folic acid to target group as a practice

nt Setting up of user and paregroups

ss in the North through Awarenevideo

d number of children Increaseand families assisted

ild Better follow up of the chthrough the structures of the CBR/outreach programmes.

Establishment of 2 new officially registered parent organisations (in Dar Es Salaam and Moshi) and meetings of groups parents in other projects

Early identification of Spina Bifida and Hydrocephalus is crucial for proper management of the conditions and to improve medical effectiveness. Early identification is dependent on information and knowledge. First line actors in this includes the midwives, nurses and other health workers; ordinary community members, the parents, Organisations that provide support services, such as Katalemwa and CURE during outreach programmes and ordinary community members. The Evaluation Team found that information is filtering through about Spina Bifida and Hydrocephalus and the services that are available for medical and other intervention. This is attested to by the numbers of children who are being referred to CURE, Katalemwa and OURS. The increasing reduction in age at first contact with doctors is also a good sign of the effectiveness of the information network when it comes to treatment. It would be true to say that the network of information for early identification is working a lot better than that for prevention.

Medical Intervention The partnership between RHF/IF and CURE international particularly the involvement of the IF consultant Dr. Ben Warf enabled growth in this area. The partnership with CURE International supported specific medical interventions by providing equipment and supplies that enabled much needed operations on children with Spina Bifida and Hydrocephalus in particular. This, in the backdrop of difficulties and delays experienced in the government hospitals, not least of which was the dearth of neurosurgeons to provide support, the availability of theatre space and supplies and costs of the operation. Many more children with Spina Bifida and Hydrocephalus and other neurological conditions have been operated upon. The partnership with CURE international is ongoing in Uganda (Mbale) and Zambia. It has provided hope to several families (see text box 2).


Programme Objectives – medically related interventions and rehabilitation

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apacity Development and Research ocus of the partnership has also been on developmen

he families of children with SBHC to support their devife. Capacity development is supported in the area of tell as in after care management. Through the projectynergies have been developed to improve capacity inut surgeries with successful rates. Another element oetter evaluation of medical conditions, enabling reducurgeries.

xchange and training programmes have led to develoountries evaluated and within various institutions in thevels. The RHF/IF partnership for instance with CURE specific focus and development of a centre of excelley counselling and guidance to family caregivers. It alsultidisciplinary team. Training has continued to be a c

kills were gained in medical management of HC/SB. Turgeons for 6 months) is credited with development oTV/CPC, fenestration of cysts and in multiple comiopsies, retrieve left in shunts and in his case, ‘TR

he benefits are not only for surgeons in Uganda but as immediate and has seen a number of strides i.e. impf the two conditions. Other training programmes wereurses and social workers who responded to the quesffectively to work with children with Spina Bifida and Hating together with appropriateness of course materia methodology.

raining programmes run at CCHU and that its staff hahe content adequate. In addition to training, there is oraining for the benefit of the children and the organizaTV and then provision of the materials for the surgeooctors who are not neurosurgeons to perform life savtherwise would have very dire circumstances. The traf people, for instance the nurses and social workers a

9 Response, CCHU Mbale

43

: Photo of oxybutonine capsule (incontinence

t capacity of health professionals and elopment and improve the quality of raining in the medical procedures as and through the partnerships, these developing countries to carry f capacity is early diagnosis as well as tion in the incidence of unnecessary

pment of expertise across the ese countries at different professional hospital, enabled the development of nce for surgical intervention supported o supported the development of a ritical aspect of the partnership. New he (i-PATH training programme for

f skills related to; doing ‘ETV, partment hydrocephalus, do AIN other doctors’39’.

cross the region. Application of skills rovement in the medical management also rated highly by for instance, the tionnaire. The capacity to use skills ydrocephalus gained the highest

ls, so training is generally effective as

s attended to is therefore effective and pportunity and support to utilize tion. A good example is the training in ns to use. The training has enabled ing shunt implants for children who ining is also relevant for other groups s well as parents are trained in a


critical aspect that affects inclusion and acceptability of children with SB. The partnership with regard to training has been described as excellent partnership with IF40’.

• Management of urine and stool incontinence • CIC, bowel management • Training nurses as trainers is critical • Training and organising parent groups

Parent and User Groups RHF/IF focuses on the client and the quality of life of the child (and adult) with SBHC within the family and community context. The focus on parents / care givers and the quality of life of the children after surgery is ‘client focussed’ and one of the areas in which RHF has a strength and a big part of its focus in the partnership. Parent and user groups are an important element of support to the families and to ensure that there is continued good practice at the family level. The user groups ideally act as a buttress for the families. Parent groups are an important element in continuation of management due to the support they can potentially and do give. They are also a way of accessing further information other indirect support that improves the livelihoods of families with children with Spina Bifida and Hydrocephalus through trainings, access to resources, lobbying for services and respect of the rights of their children, especially in terms of inclusion. Parent groups representatives in Tanzania, Zambia, Kenya, Sudan and Uganda (by focus group discussion) received both a web-based questionnaire and e-mail based questionnaires. In total 9 persons were contacted and 8/9 responded to the survey. Contacts with parents groups in Malawi did not exist. It is likely due to the fact that the programme in Malawi has not progressed as far as that of Uganda and other partner countries.

The cumulative figures for the RHF/IF Programme in 2007 and 2008 are tabulated below (Tables 6 and 7). The Evaluation Team acknowledges the use of information from databases generously provided by CURE Children’s Hospital and Katalemwa Chesire Homes.

Table 6: 2007 Cumulative figures - Total Patients since the start of the RHF/IF programme


Blantyre Malawi 459 153 612

CURE CHU 1785 559 2344

Bethany Kids Kijabe 1096 1110 2206

Khartoum ----- --- ----

Khartoum CH41 156 89 -----

CCBRT Dar 170 56 226

Overall Total 2007 5,388

40 Key informant interview with a staff of CURE hospital 41 These figures are for pre and post operation follow up, their surgery was done in Mbale so the figures for CCHU includes this group

Table 7: 2008 Cumulative Figures - Total patients since start of RHF/IF programme


CCHU 2383 646 3029

OURS 165 79 244

CURE Zambia 259 80 339

Bethany relief and Rehabilitation Kijabe 1433 1753 3186

Khartoum CH 95 71 166

Katalemwa 292 104 396

Blantyre ---- ---- 162

CCBRT Moshi 93 69

CCBRT Dar 18042

Overall Total 2008 7630

Conclusion: On the whole, the Programme has been effective and far exceeded its objectives of treating 200 patients per year with Spina Bifida and Hydrocephalus annually. For instance both Bethany Kids and CCHU had the total number of patients 3186 and 3029 patients respectively since the start of the programme; while the other partners had considerably lower figures. The RHF/IF programme has created a niche for the integrated treatment and rehabilitation of children with Spina Bifida and Hydrocephalus that was previously non-existent in the partner countries. According to literature and interviews, the age of the patients on first contact with treatment has decreased also showing effectiveness of the Programme.

4.3.4 Programme Impact Programme Impact: is defined as the totality of the effects of a development intervention, positive and negative, intended or unintended. Expected positive impacts Better quality of life for clients by arresting deterioration into various disabilities associated with the conditions. The programme has also been empowering parents and children because it provides the tools by which they can take control of their lives and enables especially parents to have the space to get on with other aspects of life.

As mentioned by one of the key informants in Mbale (and also in the annual reports), a focus on surgical care for children with SBHC has been widened to include rehabilitation and total care of the child. The significance of this is the long term influence on the practices at the health facilities (hospitals partnering with the project). User groups / associations are now

42 Only operations otherwise in 2008, 24 children with SB and HC were supported in schools and 101 were followed up through home visits


looked at by the different partners as an important group to include. The parents themselves are able to discuss and implement activities that will support their membership, and extend a helping hand to each other.

Results from the web based survey indicate several of the respondents observed and appreciate some of the procedures introduced as very important. The most important rating was given to the introduction of bladder and bowel management for Spina Bifida clients and the process of forming support groups through parents to encourage prevention, early treatment (through sensitisation). Although financial support from RHF/IF was considered important, it is significant that what is rated quite highly is the ‘rehabilitative trainings for parents and guardians of children with SB and HC, particularly those with incontinence problems, which promotes social inclusion and acceptance of the child by the people around them.

The stimulation of children, bowel and bladder management and counselling is quite empowering to the parents. Setting up of parent groups is also critical, however, it should be observed that effective outreach to parents especially those far from the partner organisations is still in infancy and difficult logistically. IF’s focus on long-term improvement in the status of the child and their inclusion in society, coupled with support by the personnel to enable outreach to clients, is a strategy that has had long lasting effect. This focus is now taken up and self sustaining for instance the CIC and bowel management are part of focussing on the quality of life of the individual and the family.

The reduced age of contact for Spina Bifida and Hydrocephalus is an important impact of the project that has an effect on the medical management of the conditions. According to CURE children used to come in at around 8 – 15 years but now they can come in at 2 weeks to 1 month (Photos 1 and 243). Mortality rates are going down attributed partly to ETV. Parents have become the advocates to other parents while the outreach programmes make it easier to reach more parents (refer to Box 2).

Unexpected positive impact Pioneering and ground-breaking work in the introduction of the ETV technique to developing countries by Dr. Warf during his tenure at CURE Mbale Children’s Hospital. His activities resulted in publications regarding his studies and also improved the expertise of neurosurgeons both in Uganda and between the partners in the South, and Mbale CURE Childrens’ Hospital.


Photo 1: Shows child with Photo 2: Same child after surgery at Hydrocephalus CURE Children’s Hospital, Mbale

43 Photographs kindly provided by CURE Children’s Hospital, Mbale


Box 2: Case studies with parent groups Focus group discussion with Parents group in Uganda: The focus group discussion with the parent group at Katalemwa Cheshire Homes involved several representatives of the board. The group has been meeting informally since 2002 but has now formalised its existence through a constitution. Its major concern is medical support for children, access to rights such as education; facilities and capacity for inclusion of children. The group is interested too in promoting “Training of the Trainers” as a way of reaching out to other parents. It addresses issues of nutrition. There are 11 members on the committee. The group supports members e.g. contribution of funds for trips to hospital, moral support and encouragement e.g. to take children to school. The group has been very useful to help parents manage. Benefits of being in a group accrue to the children too such as meeting with peers, accessing inclusive education, information on nutrition. The challenge the group has is that there are over 400 clients at Katalemwa yet hard to make smaller groups. Membership fee payment is a problem for most people (only 32 were paid up). The group depends on Katalemwa’s programmes in order to meet with members because they do not have funds. KCH facilitates their learning by sometimes paying for resource persons. They think fortification could be done by putting the supplement in sugar or salt (if its viable). One of the most important issues the group was happy about was CIC because some members had seen the benefits. In some cases different family members are involved in catheterisation e.g. mother at home, then big brother at school or self catheterisation. With the use of Oxybutiline some parents report some feeling in the child therefore potential to control urine or know when to go for catheterisation. The parent group was grappling with financial problems. As with other areas, few youth are involved in the groups.

On the whole, the general impression gained by the Evaluation Team was that the formation of a parents group was a great source of emotional support and encouragement. It was a meeting place where people cared about each other given that the majority of the members of the parent group interviewed came from difficult circumstances mostly related to poverty and exclusion by their communities.

Parent groups in partner countries: For the parent groups in Tanzania, Zambia, Sudan and Kenya, the overall view was that these parent groups functioned as a place of solace, fellowship and learning for the parents. Here parents learned how to manage CIC and bowel management. The respondents said that they attended meetings and seminars and were becoming more accepting of their children’s condition. The main challenges were the transport costs involved in travelling to the meetings, and lack of follow-up by means of communication for reminders to attend meetings. The main recommendations made were that there should more awareness regarding the treatment and survival of children with Spina Bifida and Hydrocephalus to the general public. Staff at hospitals should not stigmatize these children as this could lead to loss of life and/or further disability.

For the disability people’s organizations one of the respondents was of the opinion that these organizations should be a voice for both the children and their parents. According to another one of the respondents, the single most important contribution that the Regional Programme had provided with regard to management of Spina Bifida and Hydrocephalus at user level was funds for children and their families in Sudan. In one case, one of the helpers in a parent group was requested to leave by the parents possibly due to conflict-related matters. On the whole, parents remained in the group as long as possible but mostly left if the child died.

Conclusions: The programme has had a profound impact on both the children with Spina Bifida and Hydrocephalus and their families, and on the health personnel. At the start of the Programme, there were no parent groups and now there are parent groups in all six countries. In some countries, the parent groups have progressed further than others. However, Parent groups are still weak and require guidance and motivation, and are largely dependent on the partner organisation. Pioneering and ground-breaking work in the use of ETV at CCHU has shown that this technique is also suitable for resource-poor settings in addition to shunting. This has resulted in the technique being introduced to most of the partner countries.


4.3.5 Programme Sustainability Programme sustainability: is defined as the continuation or longevity of benefits from a development intervention after the cessation of developmental assistance

Based on the findings from the Country Study and literature reviewed, by the Evaluation Team regarding sustainability, the following inferences can be made regarding sustainability:

• Programme sustainability is a matter of grave concern, not only to RHF/IF but also to its partners and parents as well as other persons involved in disability support. This is particularly so because of the delicate nature of Spina Bifida and Hydrocephalus which requires lifelong care and the fact that the prevalence has not yet gone down. It also relates to overall protection of rights of persons with disabilities.

• A number of countries have a good policy environment with regard to support to disability, such as Uganda, Malawi, Kenya, Sudan, Tanzania and Zambia (refer to Section 3).A favourable policy environment is the first level of sustainability. It is observed that even within the disability movement, Spina Bifida and Hydrocephalus are marginalised disabilities with limited services. They are also associated with a lot of superstition and a prevalence of broken families and therefore single parenthood (mostly motherhood) and poverty44. A number of practices that buttress sustainability are promoted although challenges also abound.

• RHF/IF are heavily dependent on funding from Norad – according to the IF annual report of 2007, Norad provided 84% of its funding requirements.

• Fundraising activities towards other donors are being implemented and IF has been receiving funding from the Swedish SHIA since 2003. There is a need to intensify efforts in this area of getting other donors interested.

• A focus on local partners or locally established organisations including universities for capacity building and research. A constant look out for potential partners and small initial first steps (testing the waters/ easing into partnersip) with partners such as providing shunts and supplies initially rather than going straight into partnership enables certainty and is an approach that has worked.

• Focus on professional development of local staff at different levels, a critical mass of professionals interested in SBHC professionally right from the beginning, which has led to ‘export’ of the training programme to some institutions e.g. Mbarara University. The training programme is a lynchpin of the partnerships and is focused on and continually expanded, drawing widely beyond the 6 countries. RHF/IF has maintained contact with experts (Dr. Warf who left CCHU) and sources a number of these to provide input at various levels in terms of capacity building but also programme advice.

• Focus on capacity building of local staff and on exchange between partners with a view to learn from each other’s best practices and develop synergies in their work as well.

• Focus on user groups as a way of improving care but also as a strategy to lobby and advocate for rights and for services. Parents are encouraged to take a critical

44 Poverty can be looked at from two angles, as an underlying cause of the condition (access to proper care and medication as well as nutrition and as a result of SBHC when mothers are constrained in their capacity to eke a living and provide a livelihood for their family because of the associated care needs and sometimes stigma.


and participative role in planning and evaluation of services by the project45, and in the proper management of the child’s needs such as continence management. Sustainability of this is reinforced through training, information provision and encouragement by groups. An important element of sustainability is involvement of local government institutions in providing support, a model followed by a number of partners, including CHK. In Mbale, CCHU is changing its focus to include outreach to parents while Tanzania CCBRT (mostly Moshi) has strong parents groups that provide support and ‘heart’ to other parents. This also includes exchange between parents groups at yearly workshops including between ‘north’ and ‘south’.

• Comprehensive self evaluation procedures are followed twice a year enabling identification of bottlenecks and providing space for improvement

• RHF/IF are very clear on the project inputs and expectations of partners. The RHF/IF programme tries to influence partners to change approaches, meaning dependence is reduced and further resources are mobilised by the partners.

• An effort is being made to register IF Child Help Belgium in the region (Uganda). It is not part of the RHF/IF Programme but could be used to support linkages with other organisations. For instance focusing on information development and dissemination, communication, lobbying and advocacy

• The evaluators observed a lot of dedication amongst the staff working with children at the facilities visited, including making changes in career paths in order to pursue work in this area. This in itself is an indicator that these staff will continue to work with SBHC affected children, regardless of the input from RH/IF.

• Flexibility to pay salaries for staff considered essential enables the programme to support service provision to those areas identified as critical for the good management of SBHC, be it medically, physically or psychosocially.

• The view point of the partners, RHF and IF’s contribution to the Programme has resulted in impacts that are clearly felt, despite outreach findings. Parent groups are still weak and require guidance and motivation – still dependent on the partner organisation to a large extent. A focus on youth development as a strategy for sustainability of user groups is not really nurtured.

Conclusions: Sustainability remains a matter of grave concern to RHF/IF, parents, partners and other concerned parties, since treatment and rehabilitation of Spina Bifida and Hydrocephalus patients requires lifelong care. RHF/IF are taking steps to address this aspect for instance by fundraising activities towards other donors in addition to Norad which has been the main donor for the since 1998. Continued training of health personnel and support to parent groups is important. 4.3.6 Overall assessment

The section provides an overview of the specific evaluation issues and questions covering partners operations, main strengths and weaknesses of partner projects and partnerships, Programme management and transparency of the financial system.

How do the partner projects as centres operate to provide treatment and what are the staff working conditions?

The partner NGOs listed in the previous section (Section 3) provide medical treatment and rehabilitation to the children with Spina Bifida and Hydrocephalus. This involves diagnosis of

45 This included a focus on parents’ views during this evaluation.


the condition of Spina Bifida and/or Hydrocephalus at a hospital by health personnel. The child and its parents are referred to the hospitals specialising in neurosurgery by form of referral letter.

For instance, children with Spina Bifida and Hydrocephalus are referred to CURE Childrens’ Hospital, which functions as the main referral hospital for neurosurgery using the ETV technique and for Spina Bifida and/or Hydrocephalus. For follow-up after surgery and rehabilitation, the children and their parents are referred to Katelemwa Cheshire. There is a wide variety of locations from which referrals are made to CCHU. Using data obtained from CURE Children’s Hospital database (Appendix 5), one could see there were over 240 referrals. This includes all regions of the country, with some making more referrals than others e.g. Tororo, Gulu districts make a lot of referrals to the hospital. There are also a number of other locations like South Sudan, Kenya, Mauritius, Nairobi, West Pokot, Teso area of Kenya, Juba, Yei Ituri, Dar es salaam, Yei, Congo Kakamega, Kijabe, Busia Kenya, Mumias, Bungoma, Bunia etc. The institutions making these referrals range from government health centres, to homes, private medical centres, charity organisations, missionary institutions, a few disabled peoples organisations, Hospitals outside the country etc.

A similar set up is seen in Zambia, Malawi, Kenya and Tanzania. Provision of treatment is usually accompanied by visits to the child and caretakers home by the social workers.

Staff working conditions: According to the documentation reviewed, RHF/IF programme would link itself to previously existing primary health care systems, and the staff would be funded from other sources. So in most cases personnel or staff working on the IF/RHF programme would be “volunteers” being funded by other sources, and also specific RHF/IF Programme staff to complement the activities of the partners. Since 2003 the specific Programmme personnel have received salaries in all six partner countries.

The partnership model The partnership model promoted under the programme seeks to complement and support the partners to better provide services to children with Spina Bifida and Hydrocephalus within the services that they provide. Formal agreements made with the different projects outline the responsibilities of each of the partners. The partnership model enables each of the partners to provide support in their areas of competence as well as ensuring main responsibility by the partner organisation. This model has worked well in most cases, in that partners have included children with SBHC as part of their overall outreach to other clients and there is an increased number of parents seeking help for their child. The partnerships focus on building local expertise from within the countries and support is provided in terms of top up of salaries for specific personnel (often nurses, surgeons, social workers, physio/occupational therapists) or in some cases full salaries so these staff are employed where previously they were not. An interesting aspect is implemented in Tanzania where parents who are active and knowledgeable are used to reach out to other parents, such as in CIC and other services. This is an effective way of using the parent groups as outreach and at the same time enables the building of ownership.

Collaboration between RHF and Atlas Alliance In 2000, RHF joined Atlas Alliance. The motivation for joining Atlas Alliance was to work with like-minded organizations and to improve its capacity. Initially, RHF were of the opinion that Atlas Alliance’s management viewed them as “amateurs”, due their lack of background in international development. Despite RHF’s keen attempts to improve, they felt sidelined. When new management took over in Atlas Alliance, the relationship to Atlas Alliance improved and RHF felt they were being taken seriously and given the opportunity to improve their capacity.


As a member of Atlas Alliance, RHF had the opportunity to take courses and work with a mentor organization that was already working on projects in international development. The mentor organization is called NFU and RHF was invited to visit NFU’s partners for courses in Zanzibar. An MOU exists between the two organizations. Altas Alliance channels the funding from Norad to RHF. Conclusion: the consultants are of the opinion that the relationship is built on mutual respect and RHF has followed up on its reporting and activities. RHF has also shown a capacity to adapt and grow with expectations by upgrading its capacity through its interactions with Altas Alliance and other member organizations.

Collaboration between RHF and IF According to RHF, there is an almost daily contact with the IF Project Manager. This has been confirmed by IF. RHF has a representative on the IF board. IF also has links with a several advisors/experts for the projects in the South: These experts/advisors are used as a form of Quality assurance for IF’s partners activities e.g. for lectures and literature reviews. The Consultants posed the question– is RHF’s contribution to the Regional Programme being overshadowed by IF? According to RHF, it has not wanted to be that visible, but could this be beneficial in the long run? While in the field, the Consultants noted that not all key informants interviewed were aware of RHF and its contribution to the Regional Programme, however, most of the informants had heard of IF.

For major strategic planning and decisions, RHF is the main partner. Both organizations have committees specifically working with international development (refer to Section 3.3

On the issue of visibility, the Evaluation Team also noted that the RHF website had not been updated of late.

Conclusion: The Evaluation Team is of the view that the relationship has been long-term and both parties are very committed to improving the lives of children with Spina Bifida and Hydrocephalus. However, RHF needs to be more visible in terms of its contribution to the RHF/IF Regional Programme.

Management at the overall level Other than an overall coordination mechanism, each of the partners has their own management systems that cater to the needs of the organisation. The team was able to establish that team management methods were prevalent, with a focus on multidisciplinary expertise to deliver holistic services, supported by IF/RHF through salaries, training and guidance on work with users / parents. The field visit in Uganda noted that in Katalemwa, committees were established to take decisions in specific areas i.e. information, hospitality, programme, finance and administration committees. Outreach is also done in teams with specific expertise so that various needs are able to be met for instance CHK in their outreach teams move with orthopaedic technicians, social workers etc. The finance and administration arrangements are based on that of the organisations. RHF/IF has shown care not to unduly ‘interfere’ with the management systems of its partners but rather to enhance and enable capacity to address aspects of care, prevention and early treatment of SBHC and rehabilitation. Other than a few requirements for purposes of monitoring resource utilisation in broad terms, the systems of the organisation are used. RHF/IF promotes specific practices in its dealings with partners. These include specific applications, auditing, adherence to protocols and reports. The project report format used is comprehensive and enables detailed information and provision of evidence such as attachments of materials developed.


For instance, all partners use IF shunt leaflets to involve the parents. The annual reports require a description of protocols, which helps to focus on the right way of doing things and identify and address any challenges. All projects are supported to have social workers, Spina Bifida nurses. Information is disaggregated by gender, but it appears not much is done to analyse and use it as part of the management information system.

Assessment - Monitoring and evaluation: Visits and evaluations are very important for problem identification and solving. RHF/IF has both ensured that medical experts and other experts who are (volunteers and staff) in both organizations go on visits to the partner countries (refer to Section 3.3). Both organizations have committees that specifically work with international development. The IF Project Manager is under the final authority of the IF Board who is represented by the President. The tasks include central administration of all planning and reporting, checks approval of funds from projects, prepares dossiers to donors, including project descriptions. The Project Manager coordinates reporting to donors and central accounting. According to documentation reviewed, RHF/IF has been consistent in its reporting to both Norad and Atlas Alliance, preparation of dossiers, applications and financial reports. The coordination of the RHF/IF Programme has largely worked well given the work load involved. Assessment - working methods in relation to partners and target group Methods of communication with partners have been largely been by e-mail and evaluation visits by RHF/IF. The partners submit bi-annual reports on activities (operations, financial and management reports). The format is provided by IF. This has largely worked well, except in the case of Sudan owing mainly to language barriers. Assessment -Relevance and usefulness of training According to the field study in Uganda and respondents from Kenya, Tanzania, Zambia, Malawi and Sudan, the training to parent groups and partners was very relevant and beneficial. One of partners noted there was a need for leadership and management training of parent groups. The Consultants noted there was a gap in this area. Another respondent said the knowledge gained training from IF’s training had assisted in the formation of 5 parent groups. Furthermore, the ground-breaking research in Mbale by Dr Warf and his team has had wider implications within the region – allowing for South-South capacity building activities.

Assessment – Value Added of RHF and IF as partners and donors RHF and IF add value in two ways: i) Funding to partner projects and ii) Knowledge based activities related to the RHF/IF Regional Programme. According to literature reviewed, interviews with stakeholders in Uganda and responses from informants in Kenya, Sudan, Tanzania, Malawi and Zambia, the support from RHF and IF has been vital to the pioneer work related to treatment and rehabilitation of children with Spina Bifida and Hydrocephalus in these countries.

The parent groups expressed their gratitude to RHF/IF as partners and donors for the opportunity to gain knowledge, exchange experiences with other parents and health personnel in their respective countries. The parent groups have functioned as arenas for emotional support to many parents and their children who would otherwise suffer from ostracization in many cases.


Both RHF and IF have dedicated, committed and experienced volunteers who have a genuine interest in building the capacity of their partners in the South and bringing Spina Bifida and Hydrocephalus high on the agenda of the collaborating partners. RHF being a strong user organisation brings its expertise on working with parents and parents groups and shares with other parents groups. IF spreads knowledge about Spina Bifida and Hydrocephalus and the follows the latest medical and scientific findings in the field. It also mobilizes resources from other donors.

RHF and IF have used their partners’ expertise within medical treatment and rehabilitation of children with Spina Bifida and Hydrocephalus, and linkages to the health systems and have leveraged this in order to achieve the objectives of Regional Programme. Donors RHF and IF receive funding from Norad via Altas Alliance (refer to Section 3.4). RHF and IF are not major donors for the partner NGOs in the South, as these NGOs already receive funding from other sources. For instance Katalemwa Cheshire Home’s main donor is CBM (Christian Blind Mission) which accounts for 65% of its funding, while RHF and IF account for approximately 3-4% of grant funding. However, RHF and IF are critical donors in that their main contribution is activities linked to the RHF/IF Regional Programme treatment and rehabilitation of children with Spina Bifida and Hydrocephalus. Through the partners, RHF and IF have worked to limit costs and they have been successful in putting Spina Bifida and Hydrocephalus high on the agenda of their collaborating partners. Conclusion: On the whole, RHF and IF have added value both as donors and partners. However, the challenge is to continue to sustain the above in all partner countries.

Assessment - Human Resource Development For the RHF/IF Regional Programme, the strategy to enhance capacity building and organizational sustainability was for most of the work to be done by staff of participating partners covered by the budget of the partners. From the partners end, the following personnel are available: paediatrician(s), neuro-surgeon(s), anaesthetists, junior medical staff and other hospital staffs, physiotherapist(s), administrators, social workers and a project manager. The only paid staff by RHF/IF programme work to solve additional needs to ensure correct treatment and rehabilitation. The personnel attend conferences and seminars to keep skills updated. According to reports, as a result of capacity building of local personnel, the number of RHF/IF programme staff started out with a total of 15 staff in 2003, and by 2008 had a total of 28 programme staff in all the six countries, which is almost double. Expatriate staff with relevant expertise is made available only for short periods of training and evaluation. Conclusion: The Capacity building of partners’ staff has worked well on the whole so far and this has been confirmed by partners contacted. RHF/IF have been both fortunate to have had dedicated and committed staff and have also been proactive in building their capacity.

IF’s regional employees As previously mentioned (Chapters 2 and 3), the employees of IF Child Help Belgium in Uganda are not paid by the RHF/IF programme, but could contribute to the programme for instance by supporting linkages to other organizations and communication.


Transparency and accountability of the financial system, record-keeping, accounting and external audits

It is very difficult and ambitious within the scope of this brief review to undertake an assessment of the transparency and accountability of financial systems of six projects in six countries. However, the Consultant has examined the literature/reports received from all six projects and these are set out below.

The evaluation of the financial systems aims at assessing the transparency and the accountability of the financial system, including record-keeping, accounting, external audits. (This is about a properly kept and transparent system, rather than the question of correct accounting, which should be assessed by a certified auditor46).

It was with this background that RHF/IF has since 1998 collaborated with non-governmental organisations in Uganda and the five other partner countries through Memorandum Of Understanding (MOUs). The MOUs signed with partners spell out the roles and responsibilities of both parties. The documents have guided the roles and responsibilities of the parties to achieve the objectives of the umbrella organisation.

Financial management system requirements for grantee organizations of IF are addressed in the Memorandum of Understanding (MOUs) between IF and Grantee Organisations. Grantee organizations are expected to have certain systems, policies, and procedures in place for managing their own funds, equipment, and personnel. A system of clear roles and responsibilities should be defined in each grantee organization, and should include the financial management systems. These systems include, but are not limited to, accounting, internal controls, and budgetary controls.

The MOUs looked at highlight the rationale, objectives, duties of IF and the engagement of the partner organisation both administrative and financial terms. The financial systems of the two organisations sampled (KCH and CURE) vary in terms of their operations.

Katalemwa Cheshire Home for rehabilitation Services (KCH) KCH is a non-governmental development organization in Uganda established in 1971. It is a legally registered NGO under the NGO Board and is involved in the rehabilitation of children with physical disability with a vision of becoming an International Organisation. The organization is therefore a legal entity operating as per the laws and regulations of Uganda.

The organisation’s Articles and Memorandum is currently being revised by the Director and once ready will be presented to the board for discussion and possibly approval.

KCH’s mandate is to rehabilitate children between the ages of 0 – 18 years and to offer support to their families in developing their potential to address the underlying causes and challenges of disability problems. KCH’s programme focuses on medical and social rehabilitation through innovative community based approaches with emphasis on direct service delivery.

46 Refer to Terms of Reference


The organization is supported by a number of donors to run their activities and fulfil their mission. The following donors have directly contributed to the funds through grants that run the organisation. These being: CBM, AVSI, IFSBH, IS, Lillian Foundation, Cordaid, Comprehensive Cleft Care, SLF and Hope for the Children. KCH is run by a board of trustees made up of ten members including the Executive Director as an ex-officio. The board of trustees is elected at an Annual General Meeting (AGM) held annually. From the board of trustees are member of 2 sub-committees; Finance and Development sub-committee and Human resource sub-committee. Finance and Development Sub-committee The Finance sub-committee is composed of 4 – 5 members. The committee is chaired by the Treasure of the board of trustees, 2 other members of the board, Barclays Bank Manager and the Director/Accountant as ex-officio. The sub-committee is responsible of all matters concerning finances of the organisation. Officially the sub-committee sits quarterly and reports to the Annual General Meeting. However, the committee can also convene whenever there are urgent issues to address. The committee has therefore put in place a number of rules and regulations that control all the finances of the organization and which apply to all grants irrespective of donors. All donors have specific requirements in terms of applying for funds, reporting, and accountability which KCH adheres to. Some donors have specific information that they require to appear in their reports and have gone ahead to give specific formats for their reports. International Federation for Hydrocephalus and Spina Bifida (IF) IF budget has a specific format that it follows. The MOUs stipulate an annual budget signed between IF and KCH. IF provides specific formats for their reports which are provided bi-annually. Remittances to KCH are made in two disbursements; the first is released after the submission of the annual (end of year) report and the second disbursement after the submission of the 1st Bi-annual report which is approved by IF. IF funds have a different account (Euro account for receiving the grant and a shilling account for operations). IF emphasizes that the final accounts reports are sent converted into Euros. IF funds are audited separately the copy of the audit report is then attached to the overall organization’s annual audit report. Accounting Procedures: The organization has a draft Accounting Manual which has not yet been approved. The draft contains most of the accounting procedures that are currently practiced.

Requisitions: The procedure followed for a requisition depends on the amount requested. But for whatever amount is requested, Requisition Forms and Closing Stock forms have to be filled. The closing stocks forms are pre-requisite to ensure that the item requested for are running out and there is need to re-stock.

However if the expenditure needs an explanation, then a memo is generated which usually originate from different groups, the groups include Finance, Hospitality ant the Programme. Memos generated are taken to team/group leaders who endorse the expenditure and sent to the director for approval. After the director’s approval, the request is sent to accounts for re-examination and thereafter preparation of payment. A voucher is prepared and taken back to the director for her signature depending on the amount requested.


If the amount involved is Ushs. 10,000/- and below, the accountant and any team leader can approve in the absence of the director.

Payment cheques are prepared and sent to the board members for their signatures. 2 board members and the director are signatories to the accounts, however, at any one time there should be at least 2 signatories.

If the amount requested is higher than UShs. 100,000/-, 3 Proforma invoices are required but if the supplier is someone who has supplied before, only 1 proforma will be required. Receipts from donors: After the approval of budgets by the donors, the funds are transferred to directly the organisation’s account. Once the funds are on the account, acknowledgement of receipt is sent to specific donors, sometimes original receipts are sent to specific donors.

Receipts from clients: Funds from clients and other partners are also receipted and there is a need to balance the accounts at the end of the day. Clients sometimes pay in cash and some pay by cheques. Banking is done at least twice a week.

Budgeting Process: Preparing an annual budget is a participatory process. This is done at the beginning of the year. Different teams may specific budgets, subsequently all the teams come together to make a consolidated budgeted which is presented to the Finance Sub Committee for further discussion. The final budget is then presented to the board for approval.

Activities are encouraged to be implemented according to the budget but sometimes there are deviations. If the item was not included in the budgeted and the expenditure is substantial, a communication is made to the board for approval. Occasionally, budgets are revised and donors are informed about the revision, depending on their (donors) decision, sometimes a positive or a negative response is given.

Stock: Stock cards are used all the departments. These are used to track items in and out of the stores. In the food and drug stores apart from the stock cards, analysis books are used. The store keeper has to ensure that whatever items are available in the stores are enough to cover the period between procurement and delivery. Once the goods are delivered, the stores keepers signs a delivery note and payments are prepared according to the invoice/goods delivered. Assets: The organisation has an asset register. All the assets are owned by the organization despite their origin. The assets are not engraved but plans are underway to label them. Staff Pay Roll: The organization employs about 37 staff members. A staff pay roll is prepared by the accounts department every month. Taxes are deducted from the gross pay and what is reflected on the pay slip is net of all deductions. The staff are encouraged to open accounts in 3 banks (Barclays, Centenary and Post Bank) through which their payments are made. Taxes: The organization does not withhold taxes and are not VAT registered. PAYE is deducted from the employees who are legible for deductions and the organization also registered their employees for NSSF.


End of Year Audit and Evaluation Annual audits of the organisation’s consolidated accounts are carried out by certified auditors which is a requirement by all donors. Some of the donors whose accounts are audited individually have their audit reports forwarded to them as an obligation on the part of the organization. The organization also carries out an evaluation of their activities. This is done by the staff not by external evaluators. The evaluation is done against the workplans and budgets and is done on a quarterly basis. A partners’ meeting is held once in a year, in these meetings the organization is given feedback on their operations and it is also another way of evaluation. Conclusion: The evaluation concentrated on the issue of proper keeping and the transparency of the system, rather than the question of correct accounting and book-keeping, in view of the financial management system employed by Katalemwa Cheshire Homes, the systems appear to be thorough and transparent. The checks and balance systems put in place ensure that the financial management and accounting procedures hold steadfast. CURE Children's Hospital of Uganda CURE is a registered not-for-profit NGO with the government of Uganda and a licensed hospital with the Ugandan Ministry of Health. As a branch under CURE International, CURE operates under their organizational By-Laws and Constitution. This Constitution has been passed and approved by the local board of governors. Specific Donor Requirements: Donors have different reporting requirements. The organisation reports as requested by individual donors. Accounting Procedures: CURE International has a Finance Manual. Annual budgets are prepared and reviewed on a regular basis. The organization adheres to the tax administration; a monthly pay roll is prepared and mandatory taxes for example PAYE and NSSF are deducted from the staff emoluments. The organization is VAT exempt on some items, as per Ugandan law.

Assets: The organization has a Fixed Assets Register and owns 100% of the hospital's assets

Audits: The organization carries out an annual audit (by Ugandan firm). CURE International also employs an annual audit (by US-based firm).

Conclusion: The financial management system used by CURE Children’s Hospital appears to be thorough and transparent.

Assessment Norad RHF and IF have met the administrative conditions laid down in their contract with Norad i.e. Annual budget reports, annual narrative reports, evaluations and auditing with external auditors. On the whole, both organizations have followed up on their Programme goals and received annual funding based on performance.


Constraints and Challenges × The RHF/IF Early Intervention, Treatment and Rehabilitation of Children with SBHC

programme is dependent on partnerships and this is a strength in that there is flexibility and innovation in outreach to clients as well as opportunity to influence resource flows to this cause. However, dependence on partnerships is also an area of uncertainty, despite the MOUs signed. For instance, in Tanzania, initially the activities started with Mhimbili, but then changed to CCBRT disability hospital after a period of time.

× In Uganda, initial work with ASBAHU was sullied by lack of transparency of the partner

and outright corruption 47 leading to difficulties for the programme, in addition to the loss of support suffered by clients. This episode appears to have created a longstanding difficulty in developing the capacity for comprehensive support mechanisms for the management of SBHC, including referrals. The partnerships are therefore the strength of the programme but can also be its Achilles heel if not well managed. MOUs as mentioned above are one of the ways to improve the management of the partnerships.

× The RHF/IF Regional Programme depends a lot on capacity to link up to the health

system and to have access to health management information. The challenge here is it not clear that information on Spina Bifida Hydrocephalus is adequately collected. However, what is clear is that incidence and prevalence is not known. This is vital information that could support resource mobilisation if made available or even determine what strategies would be used.

× In Uganda, Mulago national referral hospital is an important player in managing health

issues in the country, yet there is limited active interaction and work with the hospital, which is the main national teaching hospital. This is a critical problem because it has been highlighted over and again that health personnel have limited information on SBHC management, let alone its prevention, to the extent that outreach to communities and health information and messages do not have SBHC embedded. It affects access to medical services, even for ailments that would normally be treated at health centres because health personnel due to prejudice or lack of information and fear tend to refer these children to the (specialist) health facility, often over long distances and thus risk their lives due to delays in accessing widely available medical support48.

× High staff turn over is a problem in the projects, sometimes without clear reasons as to

why the staff have left. RHF/IF has next to no control over staff because ‘most salaries are paid by the partners not RHF/IF49’ IF paid the salaries of several key staff in the partner countries. For instance in 2008, the amount of 59,934.00 Euros was paid50

× The need is great, the work is demanding and resources are limited. Long term

commitment is often challenging, even for parents and more so for health workers who sometimes lose track of clients who ‘fall beneath the radar’ by not coming back to the facility. Follow up is also affected by resource constraints and access to medical and other support is affected by the long distances of travel exacerbated by poverty in all the countries. The costs associated with the condition never let up yet management can be

47 Information from Key informant interviews pieced together 48 Key informant interviews in CHK and CCHU 49 Project Evaluation Report 2002 50 Source: IF secretariat


very demanding. Know how, care of children and sustaining a livelihood is challenging…there are few resources to support livelihoods. Inclusion would be an important way of addressing time and resource constraints but the social environment in all countries is still at its infancy in managing inclusion in education, skills training and daily life activities.

× Prevention and information dissemination on this is still very limited and does not have all

the support of the relevant authorities and even civil society in general. × Negative Cultural beliefs and attitudes of communities, including some professional staff,

leading to marginalisation and ostracisation of children and families. Inclusion therefore is a problem especially outside the home.

× Management information systems and the use and tracking of trends are still weak and

this aspect needs to be strengthened. × Lack of information, superstitions, preconceived ideas about the capacities of children

with SBHC affects the level of support, resource allocation and inclusion, especially in education.

× Organising of parents and user groups is challenged by the distances involved between

different parent. Efforts to integrate parents to join other user groups being explored e.g. Katalemwa but the path is not yet quite clear. In Tanzania a number of parents groups are involved for instance in supporting inclusive education. Efforts are being made to partner with NFU to explore opportunities for inclusion of these children, however, a lot depends on the capacity of the parents and other care givers to management incontinence, mobility and the capacity of the schools to implement a barrier reduced inclusive learning, social and physical environment in the schools. Nevertheless the need is great.

× Management of parent groups is still challenged by various expectations including lack of

capacity to address some practical challenges related to income generation and sources of livelihoods. Poverty therefore continues to be a problem. Also there are gaps in capacity of parent groups in the area of management and leadership.


5. LESSONS LEARNED, CONCLUSIONS AND RECOMMENDATIONS

5.1 Lessons Learned and Conclusions

1. In terms of comprehensiveness, there are elements that could be improved to support prevention and early intervention; for instance, although a focus on folic acid is emphasised, it was noted that for some countries such as Uganda51 (and Malawi) HC has been attributed to infections after birth to a large extent (76%) yet there is limited focus on birthing practices and the environment. More information and research is needed in this area, including a focus on conditions in health faciilities where young babies are taken. It may thus be necessary to tailor messages and preventive interventions closer to the actual underlying causes for each country while also indicating the general reasons for prevalence. For Uganda’s case, it means the conditions in the hospitals are a major risk factor, as is childbirth outside the hospitals. Midwives would therefore be a major target. A somewhat controversial group that nevertheless has to be factored in since they play such an important role in births are the traditional birth attendants and their practices that could perhaps be improved through information provision or other programme interventions and partnerships. They are also an important group for early intervention / detection.

2. Focus on professional development of local staff at different levels According to the key informants, the building a critical mass of professionals interested in Spina Bifida Hydrocephalus professionally right from the beginning, is an approach that has proved useful and should be further developed. Already, the ‘export’ of the training programme for instance in Mbale has taken place to some institutions e.g. Mbarara University. The training has enabled increase in numbers of professionals who can do the shunting procedures even where there are no neuro surgeons. The services provided thus are critical, e.g. Malawi depends on Medical officers trained in the procedures. The exchange programmes across countries enables partners learn from each other.

3. Focus on user groups as a way of improving care but also as a strategy to lobby and advocate for rights and for services improves care. Parents are encouraged to take a critical and participative role in planning and evaluation of services by the project52, and in the proper management of the child’s needs such as continence management.

4. In terms of partnerships, RHF/IF has been able to develop strategic partnerships with likeminded organisations who in turn have the capacity to continue to address and enhance the initial objectives of the partnership related to prevention, early intervention and rehabilitation of children with SBHC thus supporting sustainability in the long run where existing service providers put SBHC on their priority lists, encourage the formation of parent groups, and participate actively in the capacity building and exchanges between institutions. Different partners bring to the table different capabilities and resource opportunities. The partners come together at the yearly conferences where they can discuss how to enhance their overall objectives

51 Quote of Dr. Ben Warf’s article in the 2007 Application. 52 This included a focus on parents’ views during this evaluation.


concerning children and persons living with SB/HC and their families. 5. The concern with inclusion of children living with the effects of Spina Bifida and

Hydrocephalus at community and services level is very real. Despite favourable policy and involvement of parents; there are major difficulties faced, such as the dearth of special needs teachers (SNETS) and/or inclusive schools (in terms of the learning, social and physical environment) to name one area. The initiative started in Tanzania and Zanzibar, to link up with other organisations in the Atlas Alliance family is commendable, basing on the expertise and the contacts and resources/networks in these countries. It may be useful for RHF/IF to pursue such alliances comprehensively for each of the countries i.e. inclusive education with NFU and parent groups with NHF. These models could be expanded in each of the countries gradually, even if it is not directly with the same organisations. It is the principles and strategies that count and thereafter, identifying other organisations with the same interests in each of these countries while drawing lessons and best practice from the ‘specialist’ Atlas Alliance organisation.

6. So far, focus on sensitisation is on communities in general but not schools or planning committees at local government level. In Tanzania, there is a system of parents groups in some localities being involved in the committees at the local level, especially those linked to schools (ref. experience of NFU). Perhaps this could be explored and schools and local governments become a target for sensitisation and community action. RHF/IF needs to network on issues of inclusive education, skills training / vocational training but also alternative opportunities for education.

7. RHF/IF needs to focus on its main areas of comparative expertise while linking with

others through advocacy and lobbying to support achievement of objectives that dovetail with its interests e.g. fortification of staple foods as part of their information dissemination role. Its main area of work includes sensitisation on Spina Bifida and Hydrocephalus, treatment and support to parent groups; support to research as an important aspect of ETV focus in developing countries, including identifying other organisations to support this research to buttress the work of CURE hospital and ultimately improve the medical success of the procedure across the region 53).

8. CIC and bowel management training is significant in changing the prospects of life

for children living with the effects of Spina Bifida and/or Hydrocephalus. It has led to transformation in the quality of life of children and their families and opened up opportunities such as benefitting from inclusive education.

9. Best practice supported by IF/RHF is training and payment of Spina Bifida nurses to

support parents both in hospitals and as part of outreach, involvement of parents in practical training and as trainers or ‘motivators’ themselves. This goes for the other specialist professionals employed to work with children and parents, such as occupational and physiotherapists, social workers, complemented by orthopaedic technicians without whom comprehensvie support could not be provided to these children.

10. IF needs to target for information dissemination, organisations with a national outreach. This could include ministries and departments responsible for disability and perhaps education. There is a gap in terms of information as an empowering process for early intervention and then later the status and situation of the family that has a direct influence on the quality of life of the people concerned.

53 Quote of Dr. Ben Warf’s article in the 2007 Application


11. Multidisciplinary care is good practice in all the projects and provides a better chance at comprehensive management.

12. Important to link information and referral and strengthen linkages to the CBR process, as a best practice for management of disability, considering its holistic focus on the child and its environment as well as the opportunities to access.

13. A focus on local partners /locally established organisations including universities for capacity building and research enables sustainability and a focus on expertise. Universities are an important target in terms of training health personnel and passing messages on prevention, early detection and holistic management of SBHC. In addition, an exchange between partners enables learning from each other and popularising best practices amongst partners.

5.2 Recommendations 1. We recommnd that IF use the wide network of Health centres or units of partners

such as AVSI in Uganda to expand information and link professionals to the training component.

2. We recommend that RHF needs to improve its visibility in order to encourage user

organisations further. RHF/IF should make an effort to improve visibity with Norad and the Norwegian embassies at country level in order to explore national level opportunities such as additional funds; and lobbying for specific support. The influencing and advocacy role of RHF would be helped by higher visibility of RHF in its own right.

3. We recommend that schools and local governments be included as an additional

target. Katalemwa probably offers a good starting point as may CCBRT Moshi.

4. We recommd a focus on the youth as advocates and to the improve the awareness and sustainabilty factor.

5. We recommend that RHF/IF should revive the Africa newsletter as a means of

informing a wider audience of the on-going activities in the South. With its linkages to IF Child Help Belgium, RHF/IF could work with this office.

6. Sustainability needs building grassroots capacity through parents groups. We

recommend that RHF/IF should maintain this focus and perhaps link up with the IF Child Help Belgium in Uganda with a specific role in following up and strengthening these groups.

7. We recommend that the use of Neuro-endoscope be popularised amongst Neuro-

surgeons (training programmes) while ensuring that Ventriculo-Peritoneal shunts are placed by personnel who are properly trained and in facilities with capacity to manage or be responsive to complications that may arise.

8. We recommend that CIC and Bowel management should be taught in all facilities

where Spina Bifida is managed.

9. We recommend widespread education on preventive measures (Targeting schools) i.e. folic acid (pre- conception use); hygiene on umbilical stumps should be focussed on by all partners.


10. We recommend focus on advocacy for people with Spina Bifida and Hydrocephalus

to enhance attitude change and government support as well as the support of other Disabled Peoples Organisations.

11. We recommend provision of information to mothers for early detection and also prevention, and strengthening linkages with antenatal clinics and also with CBR programmes54. Hospitals may not be accessible enough yet a lot could be done at the community level towards (re)facilitation.

54 This issue came up time and again. In a KII at COMBRA it was observed that antenatal clinics were crucial in reaching out to women as is CBR, therefore the linkage with Community Development Officers found in every district and sub county is important. In addition, health visitors are an important group that has not been well identified but who could provide useful linkages.

ANNEX I – TERMS OF REFERENCE

TERMS OF REFERENCE

• Evaluation title

Methodological and desk review evaluation of the RHF and IF supported regional Program for Early intervention, treatment and rehabilitation of children with Spina Bifida and/or Hydrocephalus in the East, Central and Southern Africa (1998-2009)

• Background This evaluation aims at assessing the relevance, effectiveness and sustainability of the programme supported by RHF and IF. The evaluation should not only assess the working methods of RHF and IF, but also get a view on the impact of the programme on the target group, assessing the results of the programme. By impact on the target group, we mean both the medical impact of the programme, but also the support to parent groups.

Further, the evaluation aims to review how RHF and IF contributes to achieving project objectives that are agreed with the local partners in the South - with a specific focus on choice of working methods, roles and responsibilities of all stakeholders and the value added of RHF and IF as donors and partners.

Spina Bifida and Hydrocephalus

Spina Bifida is one of a group of birth defects known as Neural Tube Defects (NTDs), which occurs within the first 25 days of pregnancy and affects 1 to 2 in every 1000 live births. In addition to an obvious gap in the skin covering the spine, the vertebrae and the nervous system are damaged, leading to some degree of paralysis. Most children and adults have problems with bowel and bladder control. Spina Bifida occurs as the result of lack of absorption of folic acid before and during the first weeks of the pregnancy: food quality can influence this, though other preventative measures may also be necessary. Spina Bifida cannot be cured, though medical interventions mean that many people with Spina Bifida now live into old age and have a good quality of life. More than 85% of children with Spina Bifida also have Hydrocephalus



Hydrocephalus is the result of too much cerebrospinal fluid (CSF), the fluid that circulates in the cavities (ventricles) inside the brain, causing an increase of pressure within the skull. Normally there is a balance between the production and the absorption of CSF. If the drainage pathways are obstructed, which is the case when hydrocephalus develops, the fluid accumulates in the brain ventricles resulting in compression of the surrounding tissue. In babies and infants the head can enlarge but if the pressure is longstanding the brain is damaged. Drainage of the fluid with a device called a shunt or a natural bypass (ETV) is needed.

There are many other causes of Hydrocephalus besides obstruction of the normal CSF pathways caused by abnormal brain anatomy as is the case with Spina Bifida. Among others, it can also be the result of meningitis, tumours, cysts, trauma or intracranial bleeding which occurs more frequently following premature birth.

Spina Bifida and Hydrocephalus are two complex disabilities asking right and adequate approach and a long life care. To achieve that, information and training are needed. The multidisciplinary approach makes it a pars pro toto for the whole health care system: if a hospital is able to care for a child with Spina Bifida and Hydrocephalus in a qualitative way, it can probably handle most things. With the right approach people with Spina Bifida and Hydrocephalus can become an active part of society. Therefore it is of utmost importance to sensitise and invest in qualitative care and training. Parents of children with Spina Bifida and Hydrocephalus are probably the most important partners; this has proven in the North and will be proven in the South. Therefore they are key persons in the programme.

RHF (Norwegian Association for Spina Bifida and Hydrocephalus)

The Norwegian Association for Spina Bifida and Hydrocephalus (Ryggmargsbrokk- og hydrocephalusforeningen RHF) is the national organization for these 2 disabilities and their families. RHF has been founded in 1973 and has active local groups in almost every county of Norway. Since 1998, RHF is involved in the South, through the joint program with IF

RHF started as a small parent group and has developed to a strong user organization which improves and influences the services for the target group in Norway. As parent and user organization, RHF has contributed to improved treatment and healthcare for children and adults with Spina Bifida and/or Hydrocephalus and inclusion of their members in society. The strategy of RHF’s international solidarity work, is to use this potential and capacity in strengthening and building parents groups and organizations in the countries that receive support through the programme. RHF sees peer support as important key in the development of the programme.

IF (International Federation for Spina Bifida and Hydrocephalus)

The International Federation for Spina Bifida and Hydrocephalus (IF) is the global knowledge network on Spina Bifida and Hydrocephalus, as the worlwide umbrella organisation of these two disabilities and their families.

The mission of the IF-network is to improve the quality of life for people with Spina Bifida and/or Hydrocephalus throughout the world and to decrease the prevalence of Spina Bifida and Hydrocephalus by primary prevention. The most important way to fulfil that mission is to spread knowledge, follow the medical and scientific evolutions on treatmnet of Spina Bifida and/or Hydrocephalus, stimulate exchange and encourage contact between parents and people with Spina Bifida and/or Hydrocephalus.

RHF is an important part of the IF-Network, as RHF was one of the founding members of the International Federation for Spina Bifida and Hydrocephalus in 1979 and has always been represented in the Board.

The IF-network holds the Consultative Status with the United Nations and the Participatory Status at the Council of Europe. It has a working relationship with the World Health Organisation and holds a board position at the European Disability Forum.


The work for international solidarity is steered by a group of experienced volunteers and staff from both RHF and the IF network. The steering group consults and involves experts and professionals on different specific areas.

Solidarity in South:

The goal of RHF’s and IF’s work for international solidarity is survival of children with spina bifida and/or Hydrocephalus and a better life situation for people with Spina Bifida and/or Hydrocephalus and their families in developing countries.

The main objectives of the program are:

• Knowledge on treatment and care: Improving the basic local conditions for the treatment and rehabilitation of children with Spina Bifida and Hydrocephalus, thus ensuring the best possible medical care and rehabilitation in each specific country and situation, and ensuring sustainable and affordable health care for the target group

• Training and research: Increasing knowledge on the diagnosis and build expertise on care and rehabilitation through training and research, facilitating training and exchange, developing training material and information packages, spreading the knowledge gained in developing countries worldwide

• Supporting the development of democratic user groups in civil society (parent and user groups) in developing countries, and empower these groups through peer work, trainings, exchanges and the development of material,

• Iincreasing the expertise on inclusion of people with Spina Bifida and Hydrocephalus in all aspects of society in developing countries,

• Decreasing the incidence of the diagnosis through primary prevention

Stakeholders and partners

The stakeholders of the program are:

• Children and youngsters with Spina Bifida and/or Hydrocephalus, • Their primary caretakers, being the parents and family, • Professional/medical caregivers of the child

The program selected several good experts in East, Central and Southern Africa and shares its expertise and knowledge. The vision of the program is to complement the existing efforts, by building on what has already been achieved by existing service delivery systems. All partners care about treatment and rehabilitation of children with Spina Bifida and Hydrocephalus and aim to include them in society. All partners are local NGO’s, backed up by larger national and international NGO’s.

The selected partners are:

• Tanzania: CCBRT Disability Hospital in Dar es Salaam Comprehensive Community Based Rehabilitation Tanzania is a private Non-Governmental Tanzanian Society established in Dar es Salaam in 1994 with the goal of contributing towards poverty alleviation by responding to the lack of accessible and affordable services for disabled people in Tanzania. CCBRT provides physical rehabilitation through medical care at the CCBRT disability hospital.

• Tanzania: CCBRT Community Rehabilitation Kilimanjaro in Moshi CCBRT Community Rehabilitation Kilimanjaro offers rehabilitation and preventive services for the disabled in their local communities. CCBRT Community Rehabilitation Kilimanjaro covers a total population of 1,700,000 including Moshi (rural and urban areas), Mwanga, Hai, Arumeru and Karatu districts in Arusha. For medical care, CCBRT Community Rehabilitation Kilimanjaro cooperates with Kilimanjaro Christian


Medical Centre (KCMC) on Moshi. KCMC is a referral hospital and covers the following districts: Moshi Rural, Moshi Urban, Mwanga and Hai and Arumeru and Karatu districts in Arusha.

• Kenya: Bethany Children’s Hospital in Kijabe Bethany Kids at Kijabe Hospital is the children’s ward of Kijabe hospital. It has a 46 bed capacity and has become the referral hospital in Kenya for neurological patients. The hospital has 13 outreach clinics as far as Dadaab (North of Kenya, border with Somalia).90% of their patients have Spina Bifida and Hydrocephalus.

• Uganda: Katalemwa Cheshire Homes of Kampala in Kampala Katalemwa Cheshire Home is a disability rehabilitation centre in Kampala. Spina Bifida and Hydrocephalus children are identified and prepared for necessary surgery. After the surgery, the centre provides follow-up. Katalemwa Cheshire Home is the expert in technical aids, producing wheelchairs, sitting aids etc….

• Uganda: CURE Children's Hospital of Uganda (CCHU) in Mbale The CURE Children’s Hospital of Uganda has become the referral hospital for Spina Bifida and Hydrocephalus in Uganda. It works closely together with other centres in Uganda for referral and follow up of children. Focus has been on treatment of and research on Hydrocephalus. CCHU became the expert on alternative surgery of Hydrocephalus with ETV, making with an endoscope a natural bypass of the fluid in the head.

• Malawi: Queen Elisabeth General Hospital in Blantyre The mission of Queen Elizabeth Central Hospital is to be the centre of excellence for tertiary health care through the provision of specialized health services to the people who are referred from the district and private hospitals in the country. Queen Elizabeth Central Hospital also aims to provide an environment conducive to learning, teaching and research from which it shall benefit. QEGH cooperates with district hospitals where clinical officers are being trained to insert shunts, but the central hospital for neurosurgical care and follow up of the children.

• Zambia: Cheshire Homes CBR of Lusaka and the CURE Zambia Hospital The programme started its cooperation with Cheshire Homes CBR of Lusaka. The Cheshire home is a rehabilitation centre for children with a physical disability. Cheshire Homes CBR cooperated with the University Teaching Hospital (UTH) for neurosurgery. In 2006, the CURE Zambia Hospital started providing pediatric Orthopaedic Surgery and Neurosurgery and took over the partnership. The CURE hospital still cooperates with Cheshire Homes CBR for referral and rehabilitation.

• Sudan: Cheshire Homes Khartoum in Khartoum Khartoum Cheshire Home is a rehabilitation centre for children with a physical disability. It was established in 1974 and is registered in Sudan as NGO. There are two main departments at Khartoum Cheshire Home: in-patients and out-patients. 50 children can be lodged at the Home when recommended by volunteer doctors. Khartoum Cheshire Home provides physiotherapy, surgery, speech therapy, hydrotherapy, orthopaedic workshops, clinics, schooling and community based rehabilitation.

• Objectives of the evaluation The overall objective of this evaluation is to assess the relevance, effectiveness and sustainability of the programme supported by RHF and IF. Important is to get also a view on the impact of the programme on the target group, assessing the results of the programme. By impact on the target group, we mean both the medical impact of the programme, but also the support to parent groups.


Further, the evaluation aims to review how RHF and IF contributes to achieving project objectives that are agreed with the local partners in the South - with a specific focus on underlying working methods, roles and responsibilities of all stakeholders and the value added of RHF and IF as donors and partners. The evaluation should consider the output of the programme with respect to input of human resources and available financial resources.

Based on the findings, the evaluation should give input to improvements of the programme in order to ensure achievements of agreed project goals and expected results.

This evaluation should give a view on how RHF/IF can conduct its program in the most professional way and will involve research of partner organisations to see whether RHF/IF’s methods can be improved.

This should be evaluated with respect to the partners’ objective views of the usefulness of the partnership and with respect to human resources, available financial resources and the Norwegian government’s criteria on administration and consultancy.

The selected time frame to be assessed (1998-2008) refers to the first 10 years of the long term agreement RHF and IF have with Atlas and Norad. The time frame refers to the period where the program was introduced and the goals and objectives were defined and refined.

The review, together with other documentations and considerations, is expected to provide information, recommendations and lessons learnt in order to serve as a basis for decisions regarding future work and strategies of RHF’s and IF’s engagement in the South.

Specific evaluation issues and questions

1) What are the identified outcomes of treatment that can be attributed to the project? 2) How do the partner projects as centres operate to provide treatment, and what are

the staff working conditions? 3) What are strengths and weaknesses of different project components? 4) Assess the project organisation and management, including decision-making

processes, human resources (staff and volunteers), project administrative system and the monitoring and evaluation processes.

5) Assess the transparency and the accountability of the financial system, including record-keeping, accounting, external audits. (This is about a properly kept and transparent system, rather than the question of correct accounting, which should be assessed by a certified auditor).

6) Assess process of development of an information system for treatment and follow up of children with spina bifida and/or Hydrocephalus.

7) Identify which project components are important for the long-term vision to improve the quality of life of the beneficiaries, and discuss these aspects, especially in relation to the patient evaluation report and recommendations.

8) Assess aspects of ownership. 9) Assess strengths and weaknesses in the partnerships

• Scope and focus The evaluators shall elucidate and analyze the areas indicated below:

• Assess the relevance and clarity of the objectives of the program and the strategies and working methods for reaching these objectives

• Assess the extent to which the objectives and expected results have been achieved • Assess the project structure within RHF and IF in relation to these organisations’

capacity to follow up and contribute to the programme. • Assess how the relations and cooperation between partners influence the outcome of

the programme. In specific, the evaluators shall assess:


1. the effectiveness and adequacy in relation to the planning, implementation and follow-up of the activities, both between RHF, IF and the partners in the South

2. the effectiveness of the financial systems, reporting and other follow-up mechanisms, administrative routines and other institutional aspects ,

3. the working methods in relation to partners and target group, including lines and methods of communications, relevance and usefulness of training, as well as the transfer of knowledge/competence to its partner organisations.

4. the relevance and effectiveness of the tools and methods used in training and follow up of the projects,

5. IF’s capacity in regards to reporting and other follow-up routines (human resources, financially, efficiency),

6. IF’s local/regional employees and their specific role.

Further, the evaluation should:

• Assess whether the program target group is involved through the project implementation • Assess the role, relevance and impact of peer support in the program and the benefits of this peer support strategy • Assess the level of local ownership and sustainability of the programme and to identify the factors that might be in the way of sustainability.

The evaluator may further raise other issue of relevance and interest for RHF and IF. If such an issue should constitute a major deviation from the scope of work according to these Terms of Reference, a prior approval is required of such alterations by RHF and IF .

• Methodology The methodology applied in this evaluation shall include desk reviews of policy and project documents including quarterly/ annual reports, visiting reports, work plans and activity reports. Interviews can be conducted with RHF, IF, partners projects and subject advisors. Further, the evaluation will include a field visit to one selected partner.

(a) Desk review and consultation: The team will carry out its task based on studies of relevant documents such as long-term plans, annual project plans, strategies, project documents, reports, printed materials and budgets. The team shall interview/consult key actors, including representatives of the steering group for international solidarity, RHF and IF staff, volunteers and advisors, representatives of other NGOs and representatives of selected target groups of the program.

(b) Sampling through field visit: A crucial part of the evaluation will be a field visit to the selected projects. The aim of the field study is to assess the program, goals and objectives from the perspective of the partner. Additionally, the evaluation should include a questionnaire to all others partners of the program.

The review should, although independent of RHF and IF, be implemented in close cooperation with the organisation. RHF and IF shall be invited to provide opinions and comments in the course of preparing the report. RHF and IF will welcome any alternative suggestions that the consultant might present in the tender document on approaches and methods to be applied in performing the assignment.


• Time schedule and evaluation team The consultant team should have:

• knowledge and experience of special education and disability, • documented experience of evaluations of non-governmental organizations engaged

in international development work Africa, • knowledge in interviewing and survey skills as well as participatory methods and

techniques, • good knowledge of the involved African countries • good understanding of organisational development and disability issues, • good command of the English language, • preferably understanding of development work of disabled people’s organisations

(DPOs)

The consultant team should not consist of more than 2 persons.

The evaluation shall be completed before 1th of may 2009.

It is estimated that the maximum time needed for the review is 6 to 7 full time weeks, inclusive of travel days.

• Reporting and debriefing A draft report should be presented to RHF and IF before 1th of April 2009. IF and RHF should comment on the report within 10 days of its submission. After having received comments and remarks from IF and RHF, the final report should be prepared and presented before 1th of may 2009.

The structure of the final report, which is to be written in concise and accessible English should include:

(a) an executive summary not exceeding 2 pages, (b) major recommendations, challenges and opportunities for the program, including the

gender component. (c) relate the recommendations to the policy/development approach of RHF and IF, (d) draw conclusions and state the relevant and priority areas which can be facilitated by IF

and RHF’s support.

The report should not exceed 40 pages (excluding appendices). The evaluators will also complete a summary form for publishing of the final report on Norad’s database for evaluations

• References/ documents available An overview of:

- Formal applications and reports - Project visits, trainings and evaluation visits - Working meetings, strategic planning and internal reports - Material resulted from identified needs


ANNEX 2 – COUNTRY STUDY PLAN FOR BELGIUM AND UGANDA Day 1 Monday 20 April 2009 Arrival of Team Leader in

Belgium – meetings with IF in Brussels and Antwerp

Set the pace for the evaluation and comprehensive list of partners

Day 2 Tuesday 21 April 2009

Arrival of Team Leader in Uganda in the evening

Day 3 Wednesday 22 April 2009

Meeting with team for debriefing and review of field work

Confirmation and brief and review field work arrangements

Policy level issues

Current plans and strategies in the sectors with relation to children with SB/HC

Information on further contacts and activities

Linkage to CBR and other government programmes

Issues of inclusion in education (policy and practice)

Medical aspects and management of SB/HC in the country

Day 4 Thursday 23 April 2009

Planning day Set up of Management issues

Support received and areas of emphasis

Systems developed to track information and finances

Developments in the management of SB/HC / overview and trends over the last 10 years

Challenges and gaps

Added value of the project to the work of the organization and the quality of life of the clients of the organization

Day 5 Friday 24 April 2009 Interviews in Kampala

Key respondent COMBRA;

Key respondent – Katalemwa Cheshire Homes of Kampala

Parent/former IF Board member– Aloysius B

Interviews with parents at Katalemwa

Views and experience of parents and users on services in general, the project and its added value

Overview of support services and linkage to DPOs in the country

Policy issues and linkage with government

Added value of the project to the development of care and management of SB/HC e.g. medical aspects, care and support of SB/HC; quality of life of clients

Day 6 Saturday 25 April 2009

Team meeting and preparation for field visit to

Confirm meetings for the next week


Mbale Review documents from the field visits in Kampala

Discuss emerging issues from the visit in Kampala

Discuss and review the web based questionnaires

Send out the web based questionnaires

Day 7 Sunday 26 April 2009 Leave for Mbale in morning – travel day

Day 8 Monday 27 April 2009 Interviews in Mbale –CURE hospital staff

History and Medical aspects

Level of outreach current; changes in practice; trends in accessing; issues of follow up…systems, practical outreach; effectiveness of the programme; outreach; staff development and human resource capacity issues in general; management issues

Day 9 Tuesday 28 April 2009

Interviews at CURE Hospital, Mbale with social worker

Interview with Director of CBM (IF Partner), Mbale

Day 10 Wednesday 29 April 2009

Return to Kampala

Interview with AVSI (IF Partner)

Day 11 Thursday 30 April 2009

Interviews in Kampala

Katalemwa parents group

Katelemwa Management staff

Day 12 Friday 1 May 2009 Public Holiday in Uganda

Day 13 Monday 5 May 2009 Meeting with Ministry of Gender, Labour and Social Development

Departure of Team Leader

Day 14 Thursday 8 May 2009 Meeting with Norad Team Member Santa Vusia


ANNEX 3: CONSULTATIONS AND INTERVEIWS IN NORWAY, BELGIUM AND UGANDA Date Organization Interviewee Telephone

Interview In-person Interview

E-mail

16 April 2009 Atlas Alliance, Norway Berte Stenberg

x

16 April 2009 Atlas Alliance, Norway Trine Riis Hansen

16 April 2009 Norwegian Associaton for Spina bifida and Hydrocephalus (RHF), Norway

Eli Skattebu

x

16 April 2009 Norwegian Associaton for Spina bifida and Hydrocephalus (RHF), Norway

Runa Schøyen

x

16 April 2009 Norwegian Associaton for Spina Bifida and Hydrocephalus (RHF), Norway

Ann -Eli Spiten

x

16 April 2009 Norwegian Agency for Development Cooperation (Norad)

Vibeke Sørum x

21April 2009 International Federation for Spina bifida and Hydrocephalus (IF)

Els De Clercq x

21April 2009 International Federation for Spina bifida and Hydrocephalus (IF)

Pierre Mertens

x

24April 2009 COMBRA, Uganda Barbara Saketi

x

24 April 2009 CURE Head office, Uganda

Sam Baguma x

24 April 2009 CURE Head office, Uganda

Peter Sagabo x

24 April 2009 Katalemwa Cheshire Home, Uganda

Connie Tinka x

24 April 2009 Hydrocephalus parent/former IF board member, Uganda

Aloysius Bakkidde

x

24 April 2009 Katalemwa / CURE Neuro clinic

Various parents of children with SB/HC

X

24 April 2009 IF Child Help Belgium, Kampala

Rebecca Sangabo and Olivia Nakato

X

27 April 2009 CURE Children’s Hospital, Mbale

Derek Johnson

X


Date Organization Interviewee Telephone Interview

In-person Interview

E-mail

27 April 2009 CURE Children’s Hospital, Mbale, Uganda

John Mugamba

X


Brian Nsubuga

X


Nurses: Florence Kilankwani and Elaisha Okaisu

X

28 April 2009 CURE Children’s Hospital Mbale, Uganda

Rebecca, Social Worker

X

28 April 2009 CBM, Mbale Charles Howard

X

29 April 2009 AVSI, Uganda

Femke Bannink Mbazzi

X

30 April 2009 Katalemwa Chesire Home, Kampala

Parents group

X

5 May 2009 Ministry of Gender, Labour and Social Development, Kampala

Beatrice Kaggya, National Coordinator CBR

X

6 May 2009 Norad / Norwegian Embassy

Adrianna In Charge NGOs

X


List of parents interviewed at Katalemwa Cheshire Homes, Kampala on 24 April 2009 15 parents were interviewed and their names are withheld

No Gender Marital status Status of child Number of

children 1 Female Married Hydrocephalus 5 2 Female Married Hydrocephalus 1 3 Female Married Hydrocephalus 1 4 Female Married Hydrocephalus 1 5 Female Married Hydrocephalus 1

6 Female Married Hydrocephalus attending normal school 1

7 Female Married Hydrocephalus shunt - 2 children 2 8 Female Married Hydrocephalus 1 9 Female Married Spina Bifida 1 10 Female Married Hydrocephalus 2 11 Female Widow Hydrocephalus 5 12 Female Widow Hydrocephalus 1 13 Female single ETV 3 14 Female Married Hydrocephalus 2 15 Female Married Hydrocephalus 6 16 Female Married other 4

Partner respondents Uganda, Malawi, Tanzania, Sudan and Kenya

AVSI, Kampala, Uganda

CCBRT Dar es Salaam, Tanzania

IF Child Help Belgium, Kampala, Uganda

Khartoum Cheshire Homes, Sudan

Kijabe at Bethany kids, Kenya

OURS Mbarara, Uganda

Queen Elisabeth General Hospital, Malawi

Parents and/or parent groups in Kenya, Uganda, Sudan, Tanzania, Zambia and Malawi


ANNEX 4 – BIBLIOGRAPHY 1. WHO website: www.who.int, Oct 2006 2. Norad guidelines for inclusion of disability in development, 2002 3. WHO Afro site on Community Based Rehabilitation: http://www.afro.who.int/dpr/cbr.html

4. UNDP Human Development Report, 2007/2008, New York 5. M. Miles (2002) Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society 17: 643-658, 6. IF website: www.if-global.be7. Source: http://www.imf.org/external/np/exr/facts/prsp.htm 8. Source for figure 1: Wikepedia.com 9. Source for figure 2: Wikepedia.com 10. Source: Dr Finn Sommer (personal communication) 11. Source: WHO 1996, “Promoting the Development of Infants and Young Children with Spina Bifida and Hydrocephalus” 12. Programme documents including applications, visiting reports, assessments, annual reports, evaluations, proposals, budgets etc for all the years under review. (1998-2009)

http://www.who.int/

http://www.afro.who.int/dpr/cbr.html

http://www.if-global.be/


ANNEX 5 – TABLES Assumptions for Currency exchange rate: 1 Euros = 8.97 NOK and 1 USD = 6.41 NOK Total amount received from RHF/IF from 2001-2008 by Dar es Salaam is 121 489, 50 Euros (1,089,756.33 NOK)

Year Institution Contribution from RHF/IF in Euros

2001 Dar 21113 2002 Dar 14269 2003 Dar 15490 2004 Dar 22340 2005 Dar 19000 2006 Dar 20035,50 2007 Dar 0 2008 Dar 9242 Total 121489.50

Total amount received from RHF/IF from 2001-2008 by partner in Moshi is 98,648 Euros (884,872.56 NOK)


2001 Moshi 21235

2002 Moshi 11900 2003 Moshi 9925 2004 Moshi 8440 2005 Moshi 10368 2006 Moshi 8876 2007 Moshi 15606 2008 Moshi 12298 Total 98648

Total amount received from RHF/IF from 2001-2008 for Katalemwa Cheshire Homes is 100,834.14 Euros (904,482 NOK)


2001 Kampala 10295

2002 Kampala 12201

2003 Kampala 7129 2004 Kampala 12128 2005 Kampala 15340,77 2006 Kampala 14081,45 2007 Kampala 14553 2008 Kampala 15105,92 Total 100834.14


Total amount received from RHF/IF from 2001-2008 for Mbale Cure Childrens’ Hospital in Mbale is 110,011 Euros (986,799 NOK)


2001 Mbale 3400

2002 Mbale 7450

2003 Mbale 10509 2004 Mbale 18265 2005 Mbale 26737 2006 Mbale 24950 2007 Mbale 18700 2008 Mbale 12298,00 Total 110011

Total amount of funding received from RHF/IF from 2001-2008 for Queen Elisabeth General Hospital in Blantyre, Malawi is 115,355 Euros (1,034,734.35 NOK)


2001 Blantyre 5850

2002 Blantyre 15250

2003 Blantyre 20530 2004 Blantyre 16450 2005 Blantyre 20850 2006 Blantyre 13280 2007 Blantyre 11550 2008 Blantyre 11575 Total 115335

Total amount of funding received from RHF/IF from 2004-2008 for Khartoum Cheshire Home in Sudan is 33,929.12 Euros (304,344.20 NOK)

Year Institution Contribution from RHF/IF in

Euros 2001 2002 2003 2004 Khartoum 3000 2005 9805 2006 10199,12 2007 10925 2008 12.925,00

33929.12

The amount of funding received from RHF/IF from 2001-2008 for Kijabe in Kenya is 179,017.82 Euros (1,605,789.84 NOK)

The amount of funding received from RHF/IF from 2001-2008 in Lusaka is 3492.14 Euros (31,324.49 NOK)

Year Institution Contribution from RHF/IF Euros

2001 Kijabe 1580

2002 Kijabe 8700

2003 Kijabe 15290 2004 Kijabe 9590 2005 Kijabe 15229 2006 Kijabe 65490 2007 Kijabe 31134 2008 Kijabe 32004,82

Total 179017.82


2001 Lusaka 665 2002 Lusaka 780 2003 Lusaka 7,14 2004 Lusaka 0 2005 Lusaka 1240 2006 Lusaka 0 2007 Lusaka 800 2008 Lusaka 3492,14 Total 3492.14



RHF/IF Programme staff in partner countries between 2003-2008 project functions Year Year Year Year Year Year 2003 2004 2005 2006 2007 2008Dar es Salaam pediatrician 1 1 1 1 1 1 spina bifida nurse 1 2 2 1 Social worker 1 1 Nurse midwife 1 1 Parent trainer 1 nursing officer 1 1Moshi pediatrician 1 1 1 2 2 2 physiotherapist 1 1 1 1 1 1 Spina bifida nurse 1 1 1Kampala social worker 1 1 1 1 1 1 Nurse 1 1 Financial administrator 1Mbale clinical officer 1 1 social workers 1 1 1 3 3 3 Research Ass. 1 1 1 1 1 1 PR officer 1 1 Spina bifida nurse 1 1 1 1 1Kijabe neuro-nurse 1 1 3 4 4 neuro-nurse 1 1 data entry clerk 1 1 Social worker 2 2 1Blantyre neuro-nurse 1 1 1 2 1 1 salary compensation 4 CO's 4 4 1 Clinical officer 2 3 2 Social worker 1 Assistant nurse 1 clinical officer + coordinator 1 4 1 1 Khartoum Spina bifida nurse 1 1 1 1 Project coordinator 1 1 1 1 Lusaka Spina Bifida nurse 1 Project Coordinator 1

Adapted from IF


Table: Showing locations in Uganda sending referrals to Cure Children’s Hospital and various organizations that have referred patients to the CCHU from 2004-2009.

Locations across the region referring to CCHU

Various organizations that have referred patients to the CCHU from 2004 – 200955

Adisababa A.I.C. Kijabe Hospital Adjumani Ageteraine Nursing Home Amagoro Ahamadiya Muslim Mission Amolatar AIC Bethany Kijabe Amuria amai Amuro Amudat Hospital Amuru Anyara Health Center Angurai Apac Hospital Apac APDK RAHAB Arua Apetae Parish Beni Arua Regional Hospital Budaka ASBAHU Bududa Atutur Hospital Bugidu AVSI - Gulu Bugiri AYPC Nakapiripirit Bugoma bismillah medical centre Bukanga Budaka Rehabilitation Centre Bukedea Bufumbo H/C Bukwa Bugiri Hospital Bulisa Bugiri Regional Hospital Bundibugyo Bugobero Dispensary Bungoma BuKhalu HC 3 Bunia Zaire Buluba Hospital Bushenyi Bunawona Clinic Jinja Busia Bungoma hospital Busia (Kenya) Busiu HC 4 Butaleja Busolwe Hospital C.A.M.P Butebo H/C IV Cheptais Butiru Cheshire Home Congo Butiru Cheshire Home Dar-es salam Butiru Cheshire Home Dodoma Butiru Chrisco Hospital Dokolo Butiru Chrisco Hospital Entebbe Buwizibwera HC4 Fort Portal Buyukwe Hospital Gulu Case medical centre Hoima CBM Tororo Ibanda CBM-Kumi Ongino

55 Several organisations were not provided so not captured in the data base.


Iganga CCBRT- Dar es Salaam Isingiro Cheptais Health centre Ituri CHERUB Jei CHERUB Mukono Jinja Christian Children's Fund Juba CME-BENI Kaabong Dabani Kabale Dabani Health Centre IV Kabarole Dokolo Health Center Kaberamaido Dr. Byarugaba Kabong Fort Portal Hospital-Buhinga Kajabe Gadumire H/C Kajado General Clinic Iganga Kakamega Gulu Regional Ref Hospital Kalangala Hoima Hospital Kaliro Iganga Hospital Kampala InterAid Uganda Kamuli J.O.Y Hospice Kamwenge K.C.M.C Moshi Tanzania Kandushi Kabale Refferal Hospital Kanungu Kadic Hospital Bukoto Kapchorwa Kagadi Hospital Kasese kagando Hospital Katakwi Kamuli Mission Hospital Kayuga Kanginma Health Centre Kayunga Kapchorwa Hospital Kenya Kaproron HC IV Kibale Katakwi HC 4 Kiboga Katalemwa Cheshire Home Kigali, Rwanda Kenyata International Hospital Kilifi Kiboga Hospital Kirihura Kibuku Health Centre Kirundo/Rwanda Kibuli Hospital Kisoro kibuli Muslim Hospital Kisoro Kitgum Kisumu Kitgum Hospital Kitgum Kololo Hospital Koboko Kuluva Hospital Kotido Kumi Hospital Kumi Kumi Hospital - Ongino Kumihouitty Kumi Medical Centre Kwilu kyere HC Kyenjojo Kytotera Medical Centre Lira Lacor Hospital-Gulu Luwero Liliane Foundation Lyantonde Liliane Foundation-CURE


Magwi Lira Clinic Malaba Lira Hospital Manafa Lira Medical centre Manafwa Lwala Hospital Masaka Madera Cheshire Home Masindi Madera Dispensary Mauritius Portious Magada H C Mayom Magale Health Centre Mayuge Maracha Hospital Mbale Masafu Hospital Mbarara Masaka Regional Hospital Mityana Masindi Hospital Moroto Matany Hospital

Moroto Mbale Parents' Clinic-Royal Children's Hospital

Moshi Mbale People's Clinic Moyo Mbale Regional Hospital Mpigi Mbarara University Hospital Mt. Elgon Mbehenyi Health Unit Mubende Mengo Hospital Mubende Mother Kevin Spiritual Centre Bugiri Mukono MSF - Clinic Pader Mukono MSF Aloi Nairobi Mulago Hospital Nakapiripirit Nagongera H/C IV Nakasongola Namutamba HC Namutumba Nebbi Hospital Nebbi New Town Clinic-Mbale Ntungamo ngeta H/c Ntungamo Ngora Hospital Nyamagoo Nkokonjeru Cheshire Home Nyamira North Kigezi Project-Pat Gilmer Osureti Norwegian People's Aid Sudan Oyam Nsambya Hospital Pader Ntwetwe HC Pallisa Nyondo Health Centre Rakai Otuboi Health Center Rukungiri OURS Sembabule Owing H/C Siaya PAG Sironko PAG Mission Healthy Centre Siyaya R and J Medicare Bugiri Tanga Rubaga Hospital Teso - Kenya Sanyu Medical Centre Thyolo Savana Sunrise Clinic Tororo SDDPU


Wakiso Self West Pokoto Sereere Health Center Yayunga Sironko E.A.R.S. Yei Soroti Hospital Yeyi Sos Children's Villages in Uganda

Yumbe Southern Sudan Program ( Norwegian peoples aid)

St Anthony's Hospital Tororo St Benedict's Health Centre St Joseph's Hospital Kitigum St Margaret's Clinic State House Nakasero T.C.C.B.R.S The Nairobi Hospital The Peoples Medical Centre Tororo The Peoples' Nursing Home Tororo Hospital U.T.R.O UCBRP USDC Hoima USDC Luwero USRATUNA UTRO Hospital Wakiso District Council Watoto Child Care Ministry Welcome Home Children's Home Wesunile White Cross Clinic World Harvest Mission Zam-Zam Medical Centre

Note: It should be noted that the organizations and the locations are separate and not aligned logically, but placed in the same table.

methodological and desk review evaluation

Documents