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The Sudanese Medical Association (SMA) UK & Ireland

Oncology Services in Sudan: Realities and
Ambitions

Conference Report

December 17th , 2012
Medani, Gezira State,
Sudan

A joint conference of the Sudanese
Medical Association (UK & Ireland) and
the National Cancer Institute in Medani,
Sudan in collaboration with the
Sudanese Oncology Society
Suggested Citation:
Ahmed M., Ali Z., El Higaya E., Ibrahim N., Flavin A. and Abuidris D.O. (2013). Oncology
Services in Sudan: Realities and Ambitions, Conference Report. Sudanese Medical Association UK
& Ireland.

©Sudanese Medical Association UK & Ireland 2013
All rights reserved. Requests for permission to reproduce or translate SMA UK & Ireland
publications (whether for sale or for non-commercial distribution) should be addressed to SMA UK
& Ireland, at the below address.
The mention of specific names, organizations, companies or of certain manufacturers’ products does
not imply that they are endorsed or recommended by SMA UK & Ireland in preference to others of a
similar nature that are not mentioned. Errors and omissions are expected. The names of proprietary
products are distinguished by initial capital letters.
All reasonable precautions have been taken by SMA UK & Ireland to verify the information
contained in this publication. However, the published material is being distributed without warranty
of any kind, either expressed or implied. The responsibility for the interpretation and use of the
material lies with the reader. In no event shall SMA UK & Ireland be liable for damages arising
from its use. Information concerning this publication can be obtained from:
Sudanese Medical Association (SMA) UK and Ireland
No.9 Ros Caoin, Roscam. Galway,
Ireland
Or
P O Box 80. Morden Surrey. SM4 9AS. UK
Copies of this publication can be ordered from:www.sma-ukandireland.org/info@sma-

ukandireland.org

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Oncology Services in Sudan : Realities and Ambitions

December 2012
TABLE OF CONTENTS
Table of Contents

2

Abbreviation

4

List of Tables and Figures

5

Introduction

6

Executive Summary
Conference Sessions

8
15

Overview of the NCI

16

Overview of the Rick

19

Overview of Shandi Oncology Centre

20
22

Cancer Statistics in Sudan and Gezira State
23
Overview of cancer Registry Services In Sudan
24
Overview of the KBCC
Cancer Diagnostic in Sudan

24

Advocacy: Cancer Survivors Group

26

Development of a National Cancer Centre Model: Standards and
Challenges

27

Radiotherapy Services in Ireland: What Sudan Can Learn
Developing Cancer Strategy in Under-resourced
Challenges and Opportunities

2

Oncology Services in Sudan : Realities and Ambitions

Health System:

28
30

December 2012
Sudan –Ireland Collaboration:
The Potential of Institutional
Partnership to Improve Health Services
From Dublin to Madani: The SMA initiatives in Cancer Health Care

32

34

Conference Recommendations

36

Annex
Appendix 1: Conference Programme

38
39

Appendix 3: Photo Gallery

42

Appendix 2: IAEA Recommendations

46

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Oncology Services in Sudan : Realities and Ambitions

December 2012
ABBREVIATIONS
Sudanese Medical Association
SMA
National Cancer Institute
NCI
Radiation and Isotopes Centre in Khartoum
RICK
International Agency for Research on Cancer
IARC
International Atomic Energy Agency
IAEA
WHO

World Health Organisation

U of G

University of Gazira

GCR

Gezira Cancer Registry

SJH

St James’s Hospital , Ireland

NCHD
HLA
KBCC

Non Consultant Hospital Doctor
Human Leukocyte Antigen
Khartoum Breast Care Centre

RCSI

RCPI

4

Royal College of Surgeons Ireland

Royal College of physicians Ireland

Oncology Services in Sudan : Realities and Ambitions

December 2012
LIST OF TABLES AND FIGURES
Figure 1

Gezira University established 1975.

Figure 2

Map showing the seven localities of Gezira state.

Table 1

Incidence rate of the total number of cancer cases in 2008

Table2

Number of cancer cases treated at Shandi Centre of Nuclear
Medicine and Oncology (2009-2012)

Figure 3

Departments of Shandi Centre of Nuclear Medicine and
Oncology

Figure 4

Contributing data sources to National Cancer Registry

Figure 5

National cancer registry common cancers percentages
(overall and by gender)

Figure 6

Khartoum Breast Care Centre, KBCC

Figure 7

Principles of Irish Oncology Services planning

Figure 8

Conceptual framework for assessing access to health
services (ADAY. L.A. et al 1997)

Figure 9

The six building blocks of health systems

Figure 10

Focus areas for future Sudan-Ireland collaboration.

Figure 11

Initial steps in starting a new partnership

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Oncology Services in Sudan : Realities and Ambitions

December 2012
INTRODUCTION
Sudan is experiencing a growing cancer epidemic with major
challenges throughout the spectrum of screening, diagnosis, treatment and followup. Some of the serious challenges in this field include high incidence of advanced,
difficult-to-treat disease at presentation, high cancer burden, limited resources
and an unequal distribution of services in a big country like Sudan.
This conference attempts to evaluate oncology services in Sudan examining all
public and private oncology centres currently operating in the country. This
comprehensive review will involve present realities, gaps in the services and future
plans.
The conference also discussed international models of oncology service
provision in the Republic of Ireland and the United Kingdom with special
emphasis on governance and quality management in the development of oncology
centres. The need to create and maintain external links for standards setting and
accreditation purposes were also highlighted. The conference was held on 17th
December 2012 in Madani Heart Centre, Gezira State, Sudan.
Sudanese Medical association (SMA):
The Sudanese Medical Association- SMA (UK&I) is an independent, nongovernmental academic organization. It was founded in February 2010 and held its
inaugural meeting in the Central Middlesex Hospital. This was attended by
Sudanese healthcare professionals based in the UK and Ireland.
The Association is aiming to be an agent of change and voice of reason by
representing the public face of Sudanese medicine and bringing healthcare
professionals together in working partnership. Membership is open to all healthcare
professionals including clinicians, dentists, nurses, pharmacists and allied healthcare
scientists. Members are committed to upholding professional values away from
political or personal motivations. Their judgment on arising issues is influenced
only by the need to develop efficient healthcare for the people of Sudan.
National cancer Institute (NCI) in Gezira state:

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Oncology Services in Sudan : Realities and Ambitions

December 2012
The National Cancer Institute (NCI) is a potential centre of excellence
established in 1992 by the University of Gezira (U of G) (Figure-1) in Wad Madani,
Sudan. U of G is a community oriented university established in 1975 with a main
objective of rural development. University of Gezira is located in the centre of
Sudan in the Gezira State, the most densely populated State after the capital
Khartoum.

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Oncology Services in Sudan : Realities and Ambitions

December 2012
EXCEUTIVE SUMMARY

The conference was organised by the Sudanese Medical Association (SMA UK &
Ireland) and the national Cancer Institute, Madani (NCI) in recognition of the
rapidly rising cancer incidence in Sudan in recent years. The objective was to
assess the current situation in the country in relation to cancer and plan for the
future learning from international experience. All the important components of
cancer control including registration, prevention, screening and early detection as
well as diagnosis and treatment were addressed.
National Presentations: An overview was provided by the Sudanese speakers on
the history of the service in Sudan, the current situation, the issue of cancer
registration, gaps in the services and future plans and aspirations.
An overview of the current situation and future plans for NCI were presented by
Dr Elhaj. He spoke of the dramatic rise in cancer cases in Sudan since 1999 and
highlighted the national issues related to diagnosis of cancer particularly the lack
of diagnostic facilities. The lack of access of cancer patients to radiotherapy is also
an issue with just one cobalt machine for a population of 4 million catering for
approximately 1300 new patients seen annually. Despite these difficulties the
centre has been at the forefront of epidemiological research and has been involved
in many training workshops with international collaborators. The hospital has
established a regional cancer registry with the support of IARC. Currently in
association with the University of Gezira MSc programmes in Molecular Biology,
Medical Physics and Nuclear Medicine Technology are provided. Plans for the
future include more inpatient beds, establishing surgical oncology, upgrading
radiotherapy equipment, training of staff and strengthening research.

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Oncology Services in Sudan : Realities and Ambitions

December 2012
Dr Sedik Mustafa provided an overview of the RICK. The centre has witnessed the
huge rise in cancer incidence in Sudan. When it opened in 1967, 250 patients per
year were seen and treated compared with 7500 in 2011. The staff is well trained,
most having trained in Europe and kept up to date with regional training courses
provided by IAEA and other organisations. There is a lack of radiotherapy
equipment as the centre has only 2 cobalts and 2 linacs to deal with this volume of
patients. A big issue is a lack of ongoing maintenance of equipment which is
crucial to prevent linac downtime. Another issue identified is brain drain of
healthcare professionals
Dr Nabeel Mohamed provided an overview of services in Shandi centre. This
opened in 2009 and has an early detection programme, outpatient chemotherapy
facilities, a nuclear medicine section which has facilities for treatment of thyroid
cancers. Currently patients go to the RICK for radiotherapy although the plan is to
have a cobalt machine with simulator and treatment planning system (TPS) as well
as brachytherapy facilities in the near future. An overview was given of cancer
registration in Sudan by Drs Dafaalla Omer Abuidris (NCI) and Dr Ahmed Hashim
(NCR Khartoum).
Cancer registration was initiated in NCI in 2006 as the first attempt to create a
population based registry in Sudan. The NCI provides most of the data and Dr
Abuidris highlighted the challenges obtaining data from general hospitals as well
as the issues around death certification with many patients who die from cancer
dying at home rather than in hospital. The data collected demonstrates that the
commonest cancers in Sudan are breast, haematological malignancies and prostate
cancer.
Dr Hashim spoke of the National Cancer Registry NCR in Khartoum. This has
been re-established in 2009. The NCR is a population based register in Khartoum
state, the largest state in Sudan. Training has been provided for staff in the
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Oncology Services in Sudan : Realities and Ambitions

December 2012
registries with support from international partners. A big issue is the lack of
understanding by policy makers of the importance of cancer registration in terms
of planning for the current and future needs of a country in relation to cancer
control.
Dr Wafaa Elhadi provided an overview of the facilities in the Breast Care Centre
Khartoum. This is a not for profit institute which opened in 2010 and focuses on
diagnosis and treatment of breast cancer. Surgical and chemotherapy treatments are
available. The numbers of patients treated here is gradually increasing.
Professor Ahmed MohaMadani presented an overview of the situation regarding
pathological diagnosis of cancer in Sudan. He focussed on the importance of
accurate diagnosis to the appropriate treatment of cancer. He dealt with the need
for investment in pathology so that immunohistochemistry and cytogenetics as
well as cytology and frozen section are available for therapeutic and prognostic
information. He highlighted the importance of both internal and external quality
assurance in pathology. Currently in Sudan accreditation of pathology laboratories
is voluntary but his view was that standards would be improved by mandatory
accreditation and external peer review.
Mr Ahmed Abuzaid, a cancer survivor presented some of the issues patients have
with access to treatment, overcrowded services. He was positive however about the
fact that treatments are free in the public centres.
The main challenges identified by the local speakers were:
*Lack of a good registration systems for cancer cases
*Lack of access to good diagnostic facilities and good peer review systems to
avoid errors in diagnosis
*Lack of access to radiotherapy due to machine shortage and lack of any
radiotherapy in certain parts of the country
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Oncology Services in Sudan : Realities and Ambitions

December 2012
*Lack of maintenance of radiotherapy equipment.
*Brain drain of healthcare staff
The International speakers discussed international models of service delivery and
how Sudan could learn from experience elsewhere in relation to developing a
sustainable service into the future. The need to create and maintain sustainable
external links for setting of standards and developing a quality service was
highlighted.

Mr Ian Carter, Senior Health manager, HSE Ireland discussed the development of
a National Cancer Control Programme (NCCP) from a health manager’s
perspective. He spoke of the importance of planning the development of the
service. The allocation of funding and resources in his view were critical to
success. He highlighted the need to focus on the entire population using evidence
based strategies for all aspects of cancer control from registration to palliative care.
He spoke of the challenges that had been faced in Ireland in the past with a
fragmented service and evidence of poor outcome in comparison with European
neighbours.

Centralization of services had been implemented following the

recommendations of the NCCP with cancer centres capable of providing full range
of diagnostic and therapeutic facilities as well as ancillary services needed by
cancer patients such as physiotherapy, dietetics etc.. He emphasized the importance
of maintaining standards within the programme by means of internal and external
quality assurance.
Dr Aileen Flavin, a Consultant Radiation Oncologist spoke on the development of
Oncology services in Ireland and what Sudan might learn from Irish experience.
The outcome of cancer patients in Ireland had been poor in comparison with other
EU countries for many years. In response to this a National Plan for Radiation
Oncology (NPRO) and a National Cancer Control Programme were published in
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Oncology Services in Sudan : Realities and Ambitions

December 2012
2006. Recommendations have since been implemented that have made dramatic
changes to the delivery of cancer services in Ireland. Improvements in cancer
survival have been seen in parallel with these changes. The national nature of the
programme which looked at the needs of the population as a whole has been
integral to its success. Political support was critical as funds were allocated and
ring-fenced for cancer. Strong leadership was needed and the appointment of a
director of the NCCP drove many of the changes that were needed to implement
the programme.
Dr Faisel Mihaimeed, Director of Cancer Surgery in St Barts Hospital, London,
UK provided an overview of the global burden of cancer with a focus on the
situation in low income countries

where cancer incidence is dramatically

increasing. He spoke of the disparity between Africa and the developed world in
relation to survival of cancer patients particularly

childhood cancers. He

discussed some of the reasons for this including lack of access to radiotherapy
treatment. He spoke of the particular challenges encountered in countries like
Sudan with inadequate registration of cancer cases, lack of awareness of cancer
symptoms due to lack of education of the population, lack of trained personnel to
deal with cancer due to “brain drain” as well as limited access to diagnostic and
treatment facilities. In his view prioritizing cancer prevention is the most important
priority in cancer control in Sudan given the lack of access to diagnostics and
treatment.
Dr David Weakliam, Head of the Irish Forum for Global Health, HSE, Ireland
presented on Sudan-Ireland collaboration and the potential of institutional
partnerships to improve health services. He spoke of the history of Irish-Sudanese
co-operation with Irish involvement in humanitarian programmes in Sudan and
Sudanese healthcare professionals working in the Irish healthcare system. He
highlighted the potential of institutional partnerships to improve healthcare in both
countries. The rapidly increasing incidence of cancer in Sudan in his view made it
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Oncology Services in Sudan : Realities and Ambitions

December 2012
an important disease to focus on. He discussed the principles of Irish Aid which
are built on namely partnership, public ownership and transparency, effectiveness
and quality assurance, coherence with a particular focus on creating long term
programme sustainability. He discussed the factors that lead to effective
institutional partnerships with a shared vision being a critical factor. Other factors
leading to successful partnerships included the importance of partners getting to
know each other, developing incrementally and clear communication between
partners. He discussed European Esther Alliance of which Ireland is a member of
whose goal it is to improve health in developing countries.
Finally Dr Mohamed Ahmed, Vice-president of the SMA spoke on the SMA
initiatives in Cancer Control. He provided an overview of the St James Hospital
(SJH) initiative supported by the SMA that aims to build capacity through training
of individuals. He spoke of the potential of an institutional partnership as per
ESTHER alliance model to twin SJH with the NCI. He identified potential sources
of support for this project including the Irish Cancer Society (ICS) as well as the
Irish Forum for Global Health (HSE)
Recommendations from the conference
1: There is an urgent need to provide specialized cancer treatment centres which
incorporate the three modalities of cancer treatment( surgery, radiotherapy and
chemotherapy) to serve the wider population of Sudan particularly areas remote
from Khartoum
2: Funding for establishing these needs to be allocated and ring fenced
3: A strategy needs to be developed to train, employ and retain appropriate cancer
healthcare professionals.
4: In order to plan for the future in terms of planning services a nationwide cancer
registration programme needs to be established.
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Oncology Services in Sudan : Realities and Ambitions

December 2012
5: Support should be provided from MOH to establish sustainable institutional
links between NCI and overseas institutions such as SJH for training of cancer
healthcare professionals as well as maintaining standards.

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Oncology Services in Sudan : Realities and Ambitions

December 2012
Conference sessions

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Oncology Services in Sudan : Realities and Ambitions

December 2012
Overview of the NCI, Madani

Dr. Ahmed Elhaj , NCI Madani
In his presentation in the conference; Dr. Elhaj gave an overview about NCI
which was established in 1995 to meet the community needs in the fields of
Oncology, Nuclear Medicine and Molecular Biology. It is one of the clinical and
research medical institutes of the University of Gezira. The institute has six
departments including departments of Nuclear Medicine, Oncology, Molecular
Biology, Medical Physics and Engineering, Diagnostic Imaging and department of
Medical Laboratories.
NCI was established with the following vision:
1- Treatment and prevention of cancer.
2- Use of modern technologies of nuclear, molecular and imaging diagnostics.
3- Research in endemic diseases and cancer.
4- Training of Sudanese and African doctors, scientists, technologists and
researchers.
NCI has a large network of connections with international organizations and
with many similar local, regional and international institutes. This network
includes institutes form; Africa (Egypt, South Africa, Zimbabwe); Asia (Syria,
Jordan, Pakistan, India); and Europe (Italy, France, U.K., Germany, Sweden). NCI
has established relations with the International Agency for Research on Cancer
(IARC). IARC is one of the WHO agencies based in Lyon, France. NCI
Collaborated with IARC in establishing a population-based Gezira Cancer
Registry. NCI has a long standing collaboration with the International Atomic
Energy Agency (IAEA) of the United Nations. The IAEA has kindly provided NCI
with technical support in terms of technology transfer and capacity building of the
human resources of the institute. As a result, NCI has played a significant role in
technology transfer for the service of the community, and is now recognized as a
referral centre for advanced diagnostic methods in nuclear medicine, molecular
biology and medical imaging not only in Sudan but in the whole East African
region. It has been recognized as a central laboratory for HLA typing for Sudan
which enabled NCI to provide the service to other African countries as well.
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December 2012
Figure 1: Gezira University established 1975.
NCI has designed training programmes for short courses as well as full
degrees. The areas covered so far are; molecular biology, nuclear medicine
technology and medical physics. Three post graduate programmes are approved by
the University of Gezira. These include the following:
1- MSc/PhD in Molecular Biology.
2- MSc in Medical Physics.
3- MSc in Nuclear Medicine Technology.
NCI staff has developed a good expertise in various epidemiological research
of cancer illnesses as well as tropical diseases such as Malaria and Schistosomiasis.
Environmental and genetic determinants of several diseases were the focus of a
number of studies. NCI researchers are extending this knowledge to conduct
epidemiological cancer studies taking into account the potential impact of
infectious diseases on cancer aetiology. In the last five years, NCI has organized a
number of workshops and conferences. Notably, is the conference of the CRTC,
which was held in Madani, Sudan in June 2004. The theme of the conference was:
"CRTC: an Initiative for Cancer Prevention and Advancement of Health Research
in Sub-Saharan Africa". The NCI has also organised short training courses on
recent advances in haematological malignancies in collaboration with consultants
from Queen Elisabeth hospital in the UK. NCI has established the Gezira Cancer
Registry (GCR) with the support of IARC which provided the necessary soft ware
and training for the registry personnel.
Cancer in Gezira state:
In Sudan, diagnosis of cancer is only performed in Khartoum and Gezira due
to the huge shortage in diagnostic facilities. Cancer treatment is generally
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Oncology Services in Sudan : Realities and Ambitions

December 2012
expensive, and most of the patients cannot afford such costs in a health system that
predominantly relies on its finance on out-of pocket payments. Cancer has now
become among the top ten killer diseases in Sudan. Among females, breast cancer
is on the top of the list (34.5%) followed by cervical cancer (14.3%). Among
males, prostate cancer is the top killer. Twenty-fold increase in numbers of
reported cases was observed since the first cancer centre was established in
Khartoum in 1967. National Health Insurance covers only investigations and
surgical procedures for limited number of cancer patients. The Government of
Sudan supports the poor people through social support fund which is currently
covering the chemotherapy cost only. However, public budget is clearly inadequate
for cancer prevention and other treatment modalities, medical supplies and for
provision of sufficient human resources.

Figure 2: Map showing the seven localities of Gezira state.
The total number of patients who attended NCI so far exceeded 20,000 with
about 1300 new patients annually. It covers seven localities in Gezira state as
shown in figure-2 with details of cancer cases and population from the year 2008
in table-1. Future development plans for NCI include; building of 110 bedded
wards, establishing surgical oncology service, strengthening of research
capabilities of the institute, manpower development and the improvement of the
existing facilities for cancer treatment.

Locality

Populatin

NO of cancer cases

El Kamleen

401930

66

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Oncology Services in Sudan : Realities and Ambitions

Incidence
rate
13

December 2012
El hasahisa

606389

509

84

El managil

906216

193

21

Madani El kubra

423865

1226

289

Janub Elgezira

555250

866

156e

Sharg Elgazira

463154

327

71

Total

3575280

3265

673

Table 1: Incidence rate of the total number of cancer cases in 2008

Overview of the Service Provision in radiation & Isotope centre,
Khartoum (RICK)
Dr. Sediek M. Mostafa, Radiation and Isotopes Centre, Khartoum (RICK)
The Radiation and Isotopes Centre in Khartoum (RICK) was established in
1967 as the first cancer treatment centre in Sudan. The number of new cases seen
in RICK jumped from 250 in 1967 to 7500 cases in 2011. As a result of this
increasing pressure, there was more demand for more specialized centres for
cancer treatment. The NCI Madani was established in 1995. The two centers
(Marawi & Shandi) have building constructed and equipments contracted but
awaiting supply, installation and commissioning. There are planned centers for ElFashir (Darfur), El-Obied (Kordofan) and Gedarif. Funding has been secured for
the former of these centres.
During 1960s and 1970s, RICK’s radiotherapists, nuclear medicine physicians,
physicists, engineers, technologists and nurses were trained in Europe. Further
training and techniques updating are generally offered through courses, with IAEA
experts, scientific visits and CME courses. Brain drain of expensively trained
qualified staff remains to be a major problem facing RICK. Equipment
maintenance is another important challenge and despite the emergency funding
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Oncology Services in Sudan : Realities and Ambitions

December 2012
from the government, RICK is still in urgent need for $900,000 to update all
current equipments and replacing deteriorated components and out dated software.

Overview of Shendi Oncology Centre
Dr. Nabeel Mohamed, Shandi Centre of Nuclear Medicine and Oncology,
University of Shandi.
Shandi Centre of Nuclear Medicine and Oncology commenced providing
services in September 2009 as the third oncology centre in Sudan, after
considerable efforts from local community leaders, university directors and
political support. The hospital building which consists of four complexes is under
construction since January 2010 figure-3. It consists of four complexes. As shown
in table-2 the centre had treated nearly 500 cases since establishment in 2009.

Tumor Type
Breast
Prostate
Thyroid
Cervix
Nasopharynx
Osophagus
Rectum
Brain
A.L.L
HCC
RCC
Lung
Total

Number
Patients
112
85
73
57
38
32
22
15
11
7
4
3
459

of

Table2: Number of cancer cases treated at Shandi Centre of Nuclear
Medicine and Oncology (2009-2012)

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Oncology Services in Sudan : Realities and Ambitions

December 2012
The centre provides different health services for people living in River Nile state
through the following five departments as shown in figure-4:

Figure 3: Departments of Shandi Centre of Nuclear Medicine and Oncology
1. Oncology Department (clinic): Started in 2009 bi-weekly referring clinic.
Patients were referred to Khartoum Centre (RICK) to receive radiotherapy.
2. Early Detection Unit: Started in June 2010, mainly breast and uterine cervix
cancers. It consists of: Laboratory, Ultrasound machine and Minor Theater for
biopsy.
3. Chemotherapy Unit: Started in May 2010. It consists of a hall of 10
chemotherapy beds and pharmacy for preparation and dispensing of doses for
patients.
4. Nuclear Medicine Department: Started in March 2010. It consists of imaging
unit with Single Head SPECT Gamma Camera (MEDISO). This department has a
rradioactive Iodine unit with four isolated rooms.
5. Radiotherapy Department: It consists of Cobalt 60, Conventional Simulator,
TPS, and mould room.

Cancer Statistics in Sudan, Gezira State
Dr. Dafaalla Omer Abuidris, Dean, NCI, Madani
Hospital-based registry gives only rough estimation. There is huge potential to
lose record of many cancer patients in Sudan as some are unable to reach the
scarce cancer centres due to economical or accessibility reasons, others may die
before referral and many may not be diagnosed at all due to cost of diagnostic
21

Oncology Services in Sudan : Realities and Ambitions

December 2012
process and referral system deficiencies. Some patients may be diagnosed but
decline referral and may seek alternative medicine pathways due to cultural beliefs.
Gezira cancer registry (GCR) was established in 2006 as the first attempt to
create a population-based cancer registry in Sudan. Sources of data includes:
Oncology hospitals (NCI & RICK), main general hospitals in Gezira, main state
and private pathology labs and expert reports. The contribution is so far
predominated by the hosting location in NCI as shown in Figure-6. The weight of
data provided by NCI in the cancer registry represents more than half of the data.
There is significant difficulty obtaining data from general hospitals. Moreover,
information on mortality is difficult to trace as most patients with cancer die at
home in the absence of structured palliative and terminal care institutions and
hospices. One of the possible future solutions is to establish regional registries.
This requires provision of sufficient budget and human resources. Ongoing work in
registry will improve the quality of data and mortality can become easy to estimate
through use of advanced telecommunication technologies.

Figure 4: Contributing data sources to National Cancer Registry
As shown in Figure-7 findings from the five-year registry report in Sudan
(2011) showed that total number of cases is 5762, of which 3177 were females.
The most common tumor was breast cancer (1012) which constituted 17.6% of all
cancers and just more than 30% of female cancers. Hematological cancers were the
second commonest. The second commonest solid tumor was prostate (368) which
constituted 14.3% of all male cancers.

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Oncology Services in Sudan : Realities and Ambitions

December 2012
Figure 5 National cancer registry common cancers percentages (overall and
by gender)

Overview of the Cancer Registry Services in Sudan
Dr. Ahmed Hashim, Cancer Registry in Khartoum

The first national cancer registry started in 1967 in Khartoum with data
collected through the department of Pathology in the Faculty of Medicine,
University of Khartoum. This cancer registry functioned well until the early 1980s
when it stopped due to lack of funds. Cancer registry unit was launched at the NCI
in 2006, and the National Cancer Registry (NCR) was re-established in 2009 as
there was a necessity for cancer registries in all 17 states as a prerequisite for the
national cancer control programme. The NCR is a population-based registration in
Khartoum State as the biggest state and the capital of the Sudan. The main
objective of the NCR is to develop a system that will facilitate all the steps and
processes of creating and maintaining local and regional cancer registries and
pooling them into a single central and accessible system. Reporting sources
includes passive case finding through hospitals and Radiotherapy centers that
employed registry officers to report cases with cancer & send the data to NCR.
Active case finding is done through data obtained from private clinics and
pathology laboratories that allow the registry officers to identify and access
relevant data during routine visits. In April 2010 a dedicated building was allocated
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Oncology Services in Sudan : Realities and Ambitions

December 2012
for national cancer registry and may health facilities in Khartoum state were
surveyed & focal points for these facilities were designated for registration of
cancer cases. Subsequently a universal registration form was designed & piloted
and registration booklets were distributed to private health facilities.
Training was provided for statisticians in Khartoum, River Nile, Northern
Kordofan and Northern states. Further training was also provided for registry cadre
in France, England and South Africa in cancer registration. A new branch of cancer
registry was established in Northern state.
The building of a comprehensive cancer registry is faced with many problems
including poor awareness of policy makers in Sudan about the importance of
cancer registration, the lack of funding for expanding cancer registration in remote
states; the poor capacity of cancer diagnosis in remote states e.g. lacks of standard
pathology services and the lack of funding for surveys and screening of cancer.
The future plans aim to achieve the following targets including training of human
recourses (data management staff, registration officers, medical registrars).
establishment of information networking with regional and international
organizations, cancer registries and databases, expansion of cancer registry in all
other states, production of regular biannual report, development of standardized
pathology reporting system and improvement of cancer registry information
system.

Overview of the services in Breast Care Centre , Khartoum
Dr. Wafaa N Elhadi;
KBCC started in October 2010 and it is not-for-profit institution. There has been a
significant increase in number of patients served by Khartoum Breast cancer centre
(KBCC). This is clearly reflected in the increased number of patients who received
chemotherapy (164 in 2011 compared to 330 in 2012). During 2012, a total of
2789 new patients were seen, investigated and provided with treatment compared
to 1814 in 2011.

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Oncology Services in Sudan : Realities and Ambitions

December 2012
Figure 6: Khartoum Breast Care Centre, KBCC

Cancer Diagnostics in Sudan
Prof. Ahmed MohaMadani ,Gezira University
Regional reference laboratories are needed (one in each state). Intermediate
laboratories (at least 50 km apart) and all highly specialised tests are done in
regional laboratories. The private sector is definitely providing great help. The
laboratory services needs accreditation which is so far voluntary but essential. It is
better to seek international recognition and accreditation. It involves regular visits
and subsequent certification with reaccreditation is done periodically (every 3-4
years). The cost is a main barrier and needs national and international support.
Laboratory techniques relevant to cancer care that need equipment, training and
standardisation were discussed including cheap and quick tests as cytology which
is needs a lot of experience and frozen section that needs special equipment ready
to provide intra-operative assistance to expensive tests as Cytogentics that needs
especial training and equipment, is becoming essential for accurate classification
for prognostic and therapeutic decisions. Immunohistochemistry tests were also
discussed with their two types including tests performed to determine cell
differentiation and used for diagnostic purposes and tests that are not related to
morphology but are used for prognostic and predictive purposes as (HER2/neu,
ER/PR).

Advocacy : Cancer Survivors Group
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Oncology Services in Sudan : Realities and Ambitions

December 2012
Mr. Ahmed Abuzaid
Mr. Abuzaid explored the difficulties faced by Cancer patients in Sudan such
as access to services, waiting times and overcrowded services. He also illustrated
the benefits that patients receive such as free radiotherapy and chemotherapy
interventions in public oncology centres in Sudan. Mr. Abuzaid showed a
documentary film of recovery stories of a number of patients with cancer in Sudan.

Development of a National Cancer Centre Model: Standards and
Challenges
Mr. Ian Carter, Senior Health Manager, Health Services Executive (HSE),
Ireland
Mr. Carter started his talk by the description of a model for a National
Cancer System that addresses issues including National Control planning, Funding
and resource allocation, overall systematic design (top down, focus on population
as whole, adoption of evidence-based strategies for prevention, early detection,
diagnosis, treatment and palliation, selection of treatment options with their cost
implications comparing efficiency and effectiveness of different modalities,
establishing a National data registry that can help in subsequent outcome and
performance evaluation and Impact analysis through a National clinical audit
programme.

26

Oncology Services in Sudan : Realities and Ambitions

December 2012
Mr. Carter also discussed guidelines for establishing a model that should
adopt a population-based health system approach that recognises and addresses
inequalities with emphasis on health promotion, prevention and early detection. It
should recognize key areas of focused interventions as tobacco control, and
addresses the provision of population based and opportunistic screening
programmes adopting simple, safe, precise, validated & cheap tests with prompt
linkage to a treatment pathway if test was positive through a system that provides
effective treatment and interventions with multimodality coordination of Surgery,
Chemotherapy and Radiation Oncology. Optimally, the service setting should
allow for analytical ability through randomised trials to detect effectiveness of
interventions.
In Ireland Oncology services structural reform requirements generally entail that
hospital cancer centres to have internal capacity and capability to satisfy
population base of 500,000 with provision of full range of general medical and
surgical services including pathology, laboratory, radiology, critical surgical
subspecialty services, medical oncology, curative and palliative therapies working
within multidisciplinary teams. It should also provide a full range supporting staff
as Full Range Palliative and Specialist Nurses, Dietetic, Physiotherapy Services,
Counselling Services, Clinical and Compounding Pharmaceutical Services, Social
Work Services. It should be able to provide training facilities for specialty training
for health professions and research facilities including clinical trials. It should have
the capacity to measure adherence and compliance with treatment protocols;
maintain satisfactory quality assurance process, active engagement in accreditation
a close linkage with higher education institutions and an effective linkage with
Primary Care. Future collaboration can cover the following areas
•

International Cooperation, collaboration and partnership.

•

Comparison and evaluation of incidence & treatment outcomes.

•
Quality Assurance Collaboration, licensing, accreditation and external
validation.
•

Research partnership and education and learning opportunities.

Radiotherapy Services in Ireland: What Sudan might learn from
Ireland

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Oncology Services in Sudan : Realities and Ambitions

December 2012
Dr. Aileen Flavin; Consultant in Radiation Oncology, Cork University
Hospital, HSE, Ireland
Dr. Flavin started her presentation by giving an overview of the main seven
principles on which Oncology services development plans were based in Ireland
shown in figure 8. She described the transformational plan of cancer service
development that focussed on the establishment of four supra-regional centres
including two in the capital Dublin, one in Cork city in the south and a fourth in
Galway city in the west. Each centre will have access to all three modalities of
treatment (surgical, medical and radiation Oncology) in multidisciplinary care with
access to acute services. Regarding the radiotherapy component each centre should
have at least four radiotherapy treatment Linac units with a total of just below 40
Linacs in the country whole country serving a population with over four millions.
The current Radiation Oncology services in Ireland are provided by 28 Radiation
Oncologists treating 29,745 patients per year achieving a 5-year survival rate of
about 55%.

Figure 7: Principles of Irish Oncology Services planning

The National Plan for Radiation Oncology in Ireland (NPRO) 2006
recommended to have a national network of six facilities providing services under
28

Oncology Services in Sudan : Realities and Ambitions

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four large centres: two in Dublin and one in each of Cork and Galway with two
integrated satellite centres in Waterford and Limerick (managed by Cork and
Galway, respectively). Patients in the North-West region can have their care
affiliated to Belfast in North Ireland. Since the publication of NPRO in 2006
access has improved and national approach and collaboration in many areas such
as prostate brachytherapy and stereotactic radiotherapy has been developed with
collaboration with research: Radiotherapy trials portfolio and in 2012, National
Guidelines radiotherapy was developed for common tumours.
Dr. Flavin showed that although Ireland has a good cancer registry, cancer
outcome in Ireland is worse than European neighbours and radiotherapy services in
Ireland are under-utilised with some difficulties in access and lack of
multidisciplinary working in some centres. Private centres in Ireland are not
completely integrated in the national network so far. She then proposed potential
areas that can be adopted by Sudan from Irish experience including the necessity
for a national approach in the context of national cancer control plan. She flagged
the concern improving radiotherapy may not have a major impact as high
percentage of cancers would be advanced at the time of diagnosis. It is essential to
have a functioning updated National Cancer Registry that helps in knowing extent
of the problem to aid planning for future services with appropriate infrastructure
with particular attention to equal access. The assistance of IAEA and WHO should
be sought in developing a national cancer control plan for which the WHO
document (Developing a National Cancer Control Plan) is an important resource.

Developing Cancer Strategy in the under resourced Health
System: Challenges & Opportunities
Dr. Faisal Mihaimeed: Director of Cancer Surgery, Barts Health NHS Trust,
London, UK
Dr. Mihaimeed gave an overview of global cancer burden accounting for
12.5% of all deaths worldwide with more cancer attributed deaths than those die as
result of HIV/AIDS + TB + Malaria combined with the expectation of annual
incidence of 15 million new cases every year diagnosed globally by 2020. 70% of
the newly diagnosed cases will be in developing countries, where governments are
least prepared to address the growing cancer burden. Survival rates in developing
countries (such as Sudan) are often less than half those of more developed
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Oncology Services in Sudan : Realities and Ambitions

December 2012
countries. Over one third of cancer deaths are due to preventable causes such as
viral infection, poor nutrition and widespread tobacco use. In Africa, on average
5% of childhood cancers are cured, compared to nearly an 80% cure rate in the
developed world.
Life-saving radiotherapy is available in only 21 of Africa’s 54 countries, or to less
than 20% of the population of Africa. The combined effects of cancer, poverty,
deprivation and infectious diseases in many African countries, hinder the
development of a sustainable population and consequently a sustainable future.
Efforts to improve these poor cancer-related indicators in developing countries
are faced with considerable challenges including:
1 Inadequate data collection and registration of diagnostic and therapeutic
procedures and outcomes.
2 Lack of awareness and education in a population with significant illiteracy rates
needs to be carefully addressed. Efforts need to be made to get the message that
cancer can be treated if it is discovered and treated early.
3 Human resources shortage is one of the major challenges confronting cancer
services with massive brain drain and frequent immigration to the neighbouring
Gulf States with attractive irresistible financial reward.
4 Limited access to technology necessary for accurate diagnosis and effective
therapy and even secure data storage and analysis.
In this complicated environment to establish new up-to-date services facing
these challenges that are deeply rooted and difficult to overcome in a context of
poor socioeconomic status, prioritizing cancer prevention activities may be of
greater importance than countries well equipped to address the complexities of
providing a comprehensive cancer care service from early detection, diagnosis,
treatment, follow up and even terminal care. Preventive measures include:
• Improving awareness
• Encouraging people to adopt of healthy lifestyles
• Smoking control interventions as smoking is the single largest preventable risk
factor for cancer.
• Excessive alcohol consumption is strongly linked to an increased risk of several
cancers.
• Vaccination is now available specifically for cervical cancer.
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Oncology Services in Sudan : Realities and Ambitions

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Figure 8: Conceptual framework for assessing access to health services (ADAY.
L.A. et al 1997)

Sudan-Ireland collaboration: the potential of institutional
partnerships to improve health services
Dr. David Weakliam; Chair of the Irish Forum for Global Health, HSE, Ireland
Dr. Weakliam started his presentation by the stressing the importance of a
functioning health systems that is essential to deliver health services and
interventions and the need for capacity building of key health institutions as a
critical element in developing cancer services. He suggested that there are
opportunities for Sudan-Ireland collaboration to provide an example for a NorthSouth institutional partnership as an effective means to build the capacity of health
institutions in developing countries. He described the six building blocks of a
health system shown in Figure-9.

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Oncology Services in Sudan : Realities and Ambitions

December 2012
Figure 9: The six building blocks of health systems

Dr. Weakliam discussed the opportunity for partnership with Sudan in the
development of cancer services with emphasis on the need for leadership
involvement and commitment as vital prerequisite, supporting the national
strategy, provision of prevention and early detection services, diagnosis and
treatment facilities and palliative care. He also addressed need for partnership in
organisation and management aspects and sharing learning on best practice
particularly from model centres of excellence that can provide guidelines,
protocols and tools for information to be nationally used in satellite branch centres.
He described eight areas of focus for the potential future collaboration as shown in
figure-10. And described initial steps required when building a new partnership as
shown in figure-11

Figure 10: Focus areas for future Sudan-Ireland collaboration

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Oncology Services in Sudan : Realities and Ambitions

December 2012
Figure 11: Initial steps in starting a new partnership

From Dublin to Madani: The SMA initiatives in Cancer Health
Care
Dr. Mohamed Ahmed; Vice president of the SMA Ireland
Dr. Ahmed gave an overview of St. James’ Hospital (SJH) Initiative that aims to
build institutional capacity through training of individuals. SJH could assist in
providing guidance in many areas including identification of strengths, planning to
improve provision and utilisation of resources, accreditation cycle through training,
support and peer review, mutual visits and placements for Sudan health
professionals in SJH, providing a twinning model similar to the European
ESTHER Alliance model that Ireland joined in Feb 2012 and provides institutional
capacity building activities through twinning between hospitals of the North and
hospitals in developing countries. The twinning should meet certain criteria and
allows provision of some funding. This conference is a platform to create such
links for the future twinning between the Oncology divisions in SJH-Ireland &
NCI, Madani-Sudan. Potential support can be sought through the Irish Cancer
society. Irish Cancer Society is a charity organization and a strong advocate for
improving Irish cancer services. It is the main provider of cancer information for
prevention, detection, treatment and support in Ireland. It provides large numbers
of information leaflets & booklets in simple language. The SMA UK & Ireland got
Irish cancer Society permission to translate all of their Cancer info material into
Arabic. Translated booklets and leaflets will be available in Sudan in both
33

Oncology Services in Sudan : Realities and Ambitions

December 2012
electronic and paper formats. The Irish Forum for Global health will provide
logistic & advisory support to the project in Ireland.

34

Oncology Services in Sudan : Realities and Ambitions

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CONFERENCE RECOMENDATIONS
There is an urgent need to provide more specialised cancer treatment centres (with
3 modalities of treatment) to serve the wider population of Sudan especially in
areas distant from Khartoum such as Kordofan, Darfur and East of Sudan.
Funding for establishing such centres should be provided and ring fenced.
Human resources policy to train, employ and retain health professionals in the area
of cancer treatment.
A nationwide cancer registry programme should be established in Sudan in view of
the current fragmented registry services in Khartoum and Madani.
The National Cancer Registry should undertake epidemiological studies
investigating prevalence and burden of cancer diseases.
The outcomes of such studies should help in planning cancer services in a costeffective model.
Sudan is developing a national cancer control strategy and this provides an
appropriate framework for collaboration. Support provided by Irish institutions
should be in line with Sudan's national strategy.
There are good reasons to establish a direct institutional link with the NCI. It
already serves a large population base. It is well placed to develop services with
the new hospital being built, good institutional leadership, committed doctors and
strong community/political support. Its throughput is less that of RICK so there is
plenty of scope to expand services. In order to achieve better outcomes there is a
need to shift from late treatment/palliation to early detection and treatment.
While there are many institutions in Ireland which could provide support it makes
sense for NCI to establish a strong link with one institution, i.e. SJH. Through this
link connections can be made with other centres and organisations as indicated
(e.g. National Cancer Control Programme, Cancer Registry)

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Oncology Services in Sudan : Realities and Ambitions

December 2012
It is appropriate to focus initially on oncology services. However opportunities to
support the full range of services should also be considered over time - i.e.
including prevention, early detection and palliative care.

In order to develop an appropriate programme to support services development at
NCI, it would be important for senior clinical staff to visit and get exposure to
cancer centres and services in Ireland. SJH (Ian Carter) has offered this invitation
and will further communicate with NCI. We should be mindful that Sudan will not
exactly follow the Ireland model - for instance nursing and AHP staff play a more
limited role in Sudan and it will take some time to strengthen their role and
develop a multidisciplinary team approach. Through a visit to Ireland, NCI
clinicians will get insights into what can be strengthened in Sudan and a
programme can be tailored accordingly.
An institutional linkage with SJH offers the potential for a range of service quality
improvement measures, from individual training to institutional accreditation. Up
skilling of existing staff is a priority as the IAEA report identified that current
staffing levels are adequate. Training could include short visits to learn a
particular skill (few weeks - month) or longer for more formal training
programmes (e.g. certified nursing course).
Access to specialist training for doctors in oncology/radiation oncology is not
feasible due to the very limited places in Ireland. An option worth exploring is
whether Sudanese doctors could be facilitated to fill vacant service posts on a time
bound contract and get some recognition for experience and participation in
training activities. There would be a reciprocal benefit to Ireland through the
filling of vacant NCHD posts. This would require discussion with the HSE and the
respective training bodies (RCSI, RCPI and Sudan Medical Specialisation Board).
Something similar has been tried in the UK.

36

Oncology Services in Sudan : Realities and Ambitions

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Annex

37

Oncology Services in Sudan : Realities and Ambitions

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Conference Programme

38

Oncology Services in Sudan : Realities and Ambitions

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39

Oncology Services in Sudan : Realities and Ambitions

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40

Oncology Services in Sudan : Realities and Ambitions

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Photo Gallery

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Oncology Services in Sudan : Realities and Ambitions

December 2012
Meeting with the Minister of Health in Gezira State

Meeting with NCI Clinical Team

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Oncology Services in Sudan : Realities and Ambitions

December 2012
Meeting with the Vice President of University of Gezira

One of the conference sessions

43

Oncology Services in Sudan : Realities and Ambitions

December 2012
One of the conference sessions

The visit to NCI, Madani

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Oncology Services in Sudan : Realities and Ambitions

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IEA Report

45

Oncology Services in Sudan : Realities and Ambitions

December 2012
Diagnosis and Treatment of Cancer in Sudan: IAEA Report

Diagnosis and treatment of cancer in Sudan is managed primarily at three centres,
including the Radiation and Isotopes Center Khartoum (RICK), National Cancer
Institute and Shandi Cancer Center. There are some cancer-related services
provided at secondary and tertiary hospitals, and notably less at the primary
level. The referral system for cancer in Sudan is also noted to be weak.

Efforts are being made by the government to scale up cancer services at the
primary health care level, notably in prevention and early detection. A pilot study
is being undertaken from 2012-2013 to integrate cancer services in seven states
into primary health care. Training Tools, provision of supplies and training
courses are included in this plan.

Under its Cancer Advisory Committee within the Federal Ministry of Health,
two standard case management protocols for breast and prostate cancer have been
established. However, it was noted that these have not yet been widely distributed
due to lack of funds for publication
and distribution.

Encouragingly, interest on the part of investors to establish and strengthen
health facilities has been demonstrated recently. For instance, an extension of
RICK (opening of the Amil, or ‘Hope’ Tower) was made possible three years ago
through a US $6.7 million grant from the Islamic Development Bank. Many of
these projects are responsible for inviting foreign experts for short periods of
time to Sudan. However, a challenge facing Sudan is the often dramatic currency
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Oncology Services in Sudan : Realities and Ambitions

December 2012
fluctuations that serve as an obstacle to investors.

Most

cancer-related

services

are

available

for

free

or

are

relatively

inexpensive. Missing diagnostic investigations are referred to private centers,
which can be up to 300 times more expensive. Some tests have a waiting list of
up to three weeks. Of the approximately 10 000 new cancer patients diagnosed in
Sudan every year, RICK receives an estimated 7 000 – 8
000 patients while another 1 300 are seen in NCI.

As earlier mentioned, there are published treatment protocols for breast and
prostate cancers. However, these protocols are not widely distributed to
oncologists, and as result, recommendations are often not followed.

Radiation and Isotopes Centre Khartoum (RICK)

RICK is the main referral center, treating the largest number of cancer cases
in Sudan. Almost fifty per cent of female cancers seen at RICK are breast (2530%) and cervix (12%). The predominantly prevailing male cancers are 17-20%
prostate, 10-12% head and neck followed by cancers of the oesophagus.

Instituted in 1967, RICK recently underwent an expansion due to a grant
provided by the Islamic Development Bank (IDB). The Amil Tower (‘hope’ in
Arabic) is connected to RICK and was instituted three years ago. There are 100
beds for patients. The department of radiation oncology has four external
beam machines (two linear accelerators, two Co 60). The external beam
machines work in three shifts starting from 6:00 a.m. to 2:00 a.m. for the Co-60
machines (shifts begin at 8:00 a.m. for the linear accelerator). On a typical day,
47

Oncology Services in Sudan : Realities and Ambitions

December 2012
190 - 200 patients are treated on all machines. The waiting period ranges from
one day to three months depending on curative or palliative intent. Seventy per
cent of patients are treated with palliative intent and the remaining thirty per
cent curative. The department has one HDR brachytherapy BEBIG machine. Staff
at RICK stated that repair and maintaining uptime of radiotherapy equipment
is a challenge. As there is neither a maintenance contract nor budget for
maintenance of equipment, machines can sometimes be out of order for several
months at a time leading to insufficient radiotherapy provided to cancer patients.

A quality assurance programme for radiotherapy is in place at RICK.The staff is
comprised of 25 radiation oncologists, 65 radiation technologists, 10 medical
physicists and 10 biomedical maintenance engineers.

With regards to nuclear medicine, RICK is equipped with a SPECT gamma
camera, a radioiodine facility, isolation rooms, and staffed with four nuclear
medicine specialists and 16 nuclear medicine technologists. In diagnostic
radiology, RICK has two conventional X-ray machines, an ultra-sonography
machine, CT machine, three radiologists and five technologists.

There are an estimated 500 paediatric cancer cases per year in Sudan, of which 40
percent are treated at RICK. There are fourteen paediatric beds available, and
another eight were being prepared to be opened at the time of the mission.
Roughly 30 paediatric patients are seen per day. For chemotherapy, eighty beds
are available for male and female patients. Chemo radiation is being used for 25
patients daily. Overall, 140 - 150 patients receive chemotherapy daily. Cancer
patients requiring surgery are referred and undertake procedures outside RICK.
The clinical pharmacy started in 2007.
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National Cancer Institute (NCI)
The NCI at the University of Gezira (formerly the Institute of Nuclear Medicine
Molecular Biology and Oncology – INMO) has been in operation for thirteen
years and provides cancer services. The NCI is based in Wad Madani, roughly
three hours from Khartoum. NCI features two buildings, one of which is
currently undergoing a US $18 million construction for expansion of the
hospital. The new building will be comprised of five floors and 120 beds. Once
completed, the centre will have capabilities in chemotherapy, surgery, radiation,
operation theatres, palliative care and iodine therapy (as a part of nuclear
medicine). The centre also has a hospital-based cancer registry which seeks to
cover the four million people living within Gezira State (of the 30 million total
population of Sudan, as per 2008 census), in addition to surrounding states. The
radiology department is equipped with one MRI scan investigating 20 patients
per day and one ultrasound machine testing 25 patients daily. Conventional
radiology is also available. The radiology staff includes two specialists and six
radiographers.
The nuclear medicine department is equipped with one gamma camera and one
SPECT. The staff is comprised of two specialists, four radiographers, two
pharmacy technicians and one radiopharmacist.

NCI also has a well-equipped molecular laboratory with four machines for tissue
typing, used primarily for renal transplant, liver transplant and dialysis. The
laboratory has also analyzed tumour markers and hormone profiles. There is
one pathology laboratory that conducts routine pathology studies (including
blood studies). Six staff members work in the laboratory.

Regarding radiotherapy, the centre is equipped with one Co-60 machine operating
daily from 8:00 a.m. to 6:00 p.m. which treats sixty patients daily. The waiting
49

Oncology Services in Sudan : Realities and Ambitions

December 2012
list is one week for patients beginning radiation therapy. Treatment and dose
schedules are radical and curative for fifty per cent of patients and palliative for
the remaining half. The centre does not have a brachytherapy machine and a
request to the IAEA has been put forth for a high-dose rate brachytherapy
machine. An old LDR machine has not been functional for the past ten years.
According to 2011 data, the centre treats an estimated 1 300 patients per year with
radiation.

Much like RICK, staff at NCI noted difficulties in keeping equipment up and
running on a consistent basis. There are no budgets or maintenance contracts in
place for the majority of equipment at NCI. There are no trained service
engineers on staff at NCI who are able to repair any out of service equipment
and obtaining maintenance from abroad under the present circumstances remains a
challenge. A quality assurance programme for radiotherapy is established at NCI.
The centre is equipped with 15 dedicated chemotherapy beds. Chemotherapy is
provided at no cost to the patient and an average of 25 patients is seen daily. NCI
presently has 47 inpatient beds for males and females. The centre has two
paediatric oncologists who are treating one hundred patients annually.

For male and female patients receiving treatment at NCI, a 50-bed boarding
house is made available for longer-term stays and is located in the vicinity of the
hospital. The house hosts a kitchen for patients and families staying at the
facility, and offers patients (who sometimes travel from neighbouring countries) a
chance to finish treatment while remaining on site.

Shandi Cancer Centre

Shandi Cancer Centre is a university based center. Shandi University Hospital has
50

Oncology Services in Sudan : Realities and Ambitions

December 2012
one clinic, the ‘older’ Shandi Centre, which treats an estimated 375 new
cancer cases per year (an estimated 75 of these cases are referred from RICK).
Diagnosis services (except for nuclear medicine) are located in the hospital
campus. Hematology, parasitology, microbiology and histopathology laboratories
(no immunohistochemistry) are well equipped and staffed.

Radiology services include conventional X-ray, ultrasound and CT scan; a
radiologist and three technologists make up the staff. There is neither a
mammography unit in the hospital nor a colposcopy unit.

The nuclear medicine service is located in the cancer unit. The facility is
equipped with a gamma camera and staffed by two technologists, one medical
physicist and one nuclear medicine physician (currently training in Egypt). A
very small number of cases are seen, since only one Technetium99 generator per
month is procured from Turkey.

Surgery is mostly performed at the surgical departments of the hospital or in
Khartoum and then sent for chemotherapy and follow up in Shandi. The center
has a chemotherapy service that is run by one clinical oncologist who travels
from Khartoum once per week, typically examining 30 patients per visit. The
service is a day care service with 15 beds and a centralized area for
chemotherapy preparation (with a laminar flux cabin). One clinical pharmacist
and three nurses treat 10-12 patients per day. There is currently no radiotherapy
service at the center. Two oncologists are currently in training.

Though not yet ready to receive cancer patients, the Shandi Cancer Center has a
new campus under construction. Consisting of five buildings, the new centre is
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Oncology Services in Sudan : Realities and Ambitions

December 2012
about to open. In the new facility (located outside of the university hospital
campus), the main building will host radiotherapy and chemotherapy services.
Radiotherapy equipment has already been procured and consists of one
“Equinox” cobalt therapy unit, one conventional simulator, a 2D treatment
planning system (TPS) and a brachytherapy unit (with cobalt sources). Staff for
this service will be available when the centre opens, and will be comprised
of two clinical oncologists, two medical physicists, and two RTTs. A nuclear
medicine service will also be added to the treatment facility. The new center will
have two inpatient wards, a day care unit for oncology ambulatory treatment and
radiology department.

Additional Sites

Khartoum Teaching Dental Hospital is a government hospital that treats
250 patients annually with head and neck cancers. Most head and neck cancers
that present at the hospital are late-stage cancers among men aged 31-40 and are
referred to RICK for radiation and chemotherapy. Cases requiring surgery are
seen by three head and neck surgeons who perform complex resections and
reconstructions at the hospital. The hospital has four operating rooms and 50
beds. In 2006, 155 cancer patients were seen at the hospital. Two- hundred and
fifty were seen in 2011, and raise of awareness among the population about ‘the
bad disease’ (as cancers is sometimes referred to among the general population) is
seen as the cause.

Rabat University has an ambitious plan to construct a US $14 million cancer
center in Khartoum. To date, land has been secured for the project though lack of
funding has delayed the project.

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Oncology Services in Sudan : Realities and Ambitions

December 2012
Khartoum Breast Center is a privately owned, state of the art breast centre that
commenced operations last year. Staff from the centre claimed that they suffer
from currency fluctuations and few patients, since many nationals who can afford
treatment prefer travelling abroad.

The breast center in Khartoum Hospital opened in 2005 which has four
surgeons and four medical oncologists as staff. Most cases are advanced and
require mastectomy and/orchemotherapy. Reconstruction has been recently
introduced. There is currently a five months delay for treatment, and treatment is
not free for patients. There is no MRI capability. They refer mammography to
private centers.

Royal Care Private Centre is a private multi-specialization hospital. The
surgical department is made up of three general surgeons, one vascular
surgeon and one neurosurgeon. There is one clinical oncologist on staff
taking care of chemotherapy for referred cancer patients. Royal Care has a
clinical p harmacy department. The hospital demonstrated interest in acquiring
radiation oncology facilities. The oncologist informed the team that Royal Care’s
plan was for one linear accelerator, one planning system and one CT simulator.
Bunkers for two machines have been designated in the basement.

Alneelin Diagnostic Clinic is a private facility with nuclear medicine and radio
diagnostic capabilities. The centre has a SPECT Single Head Gamma camera,
one MRI scan, one CT Scanner, one Mammography machine, one ultrasound
(alone), one ultrasound with Doppler facility,
addition

to

endoscopy

facilities

one

conventional

x-ray,

in

(Including Gastroenterology, cystoscopy,

echo cardiography, EEG, ECG, lithotripsy and blood studies). The centre works
in two shifts and some services are available for 24 hours per day, seven day per
53

Oncology Services in Sudan : Realities and Ambitions

December 2012
week. The staff included seven doctors on permanent staff and seven working on
a Shift basis.
Khartoum Maternity Hospital is the oldest and largest women’s hospital in
Sudan. The hospital has one gynecologist oncologist on staff. The hospital gives
special attention to the early detection of cervical cancer.

3.7 Assessing Sudan’s Radiotherapy Needs

When devising a radiotherapy plan, it is advised that the plan be designed in
phases based on the quantity and complexity of the equipment and the human
resources needed. The plan specific for radiotherapy should be integrated within
the larger National Cancer Control Plan. According to GLOBOCAN 2008 data,
there are 21 860 new cancer cases in Sudan per year. As it is recognized that
60% of patients will require radiotherapy during the course of treatment,
approximately 13 116 cancer patients will need treatment annually.

Sudan presently has two linear accelerators and three Co-60 machines in working
order for a population of 30 million. However, these machines are present in
only two centres in two adjacent states (Khartoum and Gezira) and do not cover
the whole population. The impact team endorses the government’s plan to develop
five new centres with additional machines to meet the radiotherapy needs of
Sudan.

Since one radiotherapy machine can treat an estimated 500 patients per year, it
is foreseen that 26 radiotherapy units would be required to serve the needs of
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Oncology Services in Sudan : Realities and Ambitions

December 2012
cancer patients in Sudan. However, the requirement of 26 teletherapy units is
made on the assumption that all patients with cancer in Sudan would seek
treatment. At present, the number of patients in Sudan seeking treatment with
radiotherapy (and other interventions) is expected to be less than those expressed
by
•

GLOBOCAN

estimates

due

to

the

following

reasons:

Access, whether geographic or economic. Given the large distances that

patients must travel across Sudan to seek treatment, many patients may not have
the financial means to support transportation costs. Further, patients and families
must have sufficient financial resources to arrange for accommodation and
other requirements for the duration of treatment in Khartoum or Wad Madani;
•

Sub–prescription of treatment, often attributable to the lack of specialized

knowledge by doctors in charge a patient’s treatment; and
•

Overcapacity of radiotherapy treatment centres. Often, overloaded

radiotherapy centres cannot accommodate a large influx of patient demand, or
must delay treatment for

patients who present at late stages of disease. As per

IAEA staffing recommendations (one radiation oncologist per 250-300 new
patients), radiation oncologist staff is adequate in both RICK and NCI (25
radiation oncologists for 7000+ patients at RICK and three oncologists at NCI for
1300 patients), though a continuous professional development program needs to
be instituted so that trained staff can be retained. The number of radiation therapy
technologists is adequate as per IAEA recommendations. Given the IAEA
guidance on medical physicist staffing (one medical physicist per 400
patients), the current 15 working in Sudan would need to be coplemented to
meet a recommended 21. Staffing requirements would need to be reassessed
given the planned expansion of radiotherapy services in the country.
With respect to training and human resource development, a training programme
for radiation Oncologists was started in 2002 and is under the Medical Council.
Currently, 34 radiations Oncology registrars are under training; of those, nine
are in their final year. Fifteen such Students have graduated from the programme
55

Oncology Services in Sudan : Realities and Ambitions

December 2012
in the last five years. Medical physicists also receive training and obtain a Master’s
of Science Degree. The radiation therapy technologist course is offered and is of
four years duration. Under the programme, training is conducted in both radiodiagnosis and therapy.

The IAEA provides guidance on the assessment of radiotherapy needs and further
recommendations on setting up a radiotherapy programme1.

1 Setting Up a Radiotherapy Programme: Clinical, Medical Physics, Radiation
1
Protection

and

Safety

Aspects:http://cancer.iaea.org/documents/Ref5-

TecDoc_1040_Design_RT_proj.pdf Planning National Radiotherapy Services: A
Practical

Tool:

pub.iaea.org/MTCD/publications/PDF/Pub1462_web.pdf

http://www-

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Oncology services in sudan

  • 1. The Sudanese Medical Association (SMA) UK & Ireland Oncology Services in Sudan: Realities and Ambitions Conference Report December 17th , 2012 Medani, Gezira State, Sudan A joint conference of the Sudanese Medical Association (UK & Ireland) and the National Cancer Institute in Medani, Sudan in collaboration with the Sudanese Oncology Society
  • 2. Suggested Citation: Ahmed M., Ali Z., El Higaya E., Ibrahim N., Flavin A. and Abuidris D.O. (2013). Oncology Services in Sudan: Realities and Ambitions, Conference Report. Sudanese Medical Association UK & Ireland. ©Sudanese Medical Association UK & Ireland 2013 All rights reserved. Requests for permission to reproduce or translate SMA UK & Ireland publications (whether for sale or for non-commercial distribution) should be addressed to SMA UK & Ireland, at the below address. The mention of specific names, organizations, companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by SMA UK & Ireland in preference to others of a similar nature that are not mentioned. Errors and omissions are expected. The names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by SMA UK & Ireland to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall SMA UK & Ireland be liable for damages arising from its use. Information concerning this publication can be obtained from: Sudanese Medical Association (SMA) UK and Ireland No.9 Ros Caoin, Roscam. Galway, Ireland Or P O Box 80. Morden Surrey. SM4 9AS. UK Copies of this publication can be ordered from:www.sma-ukandireland.org/info@sma- ukandireland.org 1 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 3. TABLE OF CONTENTS Table of Contents 2 Abbreviation 4 List of Tables and Figures 5 Introduction 6 Executive Summary Conference Sessions 8 15 Overview of the NCI 16 Overview of the Rick 19 Overview of Shandi Oncology Centre 20 22 Cancer Statistics in Sudan and Gezira State 23 Overview of cancer Registry Services In Sudan 24 Overview of the KBCC Cancer Diagnostic in Sudan 24 Advocacy: Cancer Survivors Group 26 Development of a National Cancer Centre Model: Standards and Challenges 27 Radiotherapy Services in Ireland: What Sudan Can Learn Developing Cancer Strategy in Under-resourced Challenges and Opportunities 2 Oncology Services in Sudan : Realities and Ambitions Health System: 28 30 December 2012
  • 4. Sudan –Ireland Collaboration: The Potential of Institutional Partnership to Improve Health Services From Dublin to Madani: The SMA initiatives in Cancer Health Care 32 34 Conference Recommendations 36 Annex Appendix 1: Conference Programme 38 39 Appendix 3: Photo Gallery 42 Appendix 2: IAEA Recommendations 46 3 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 5. ABBREVIATIONS Sudanese Medical Association SMA National Cancer Institute NCI Radiation and Isotopes Centre in Khartoum RICK International Agency for Research on Cancer IARC International Atomic Energy Agency IAEA WHO World Health Organisation U of G University of Gazira GCR Gezira Cancer Registry SJH St James’s Hospital , Ireland NCHD HLA KBCC Non Consultant Hospital Doctor Human Leukocyte Antigen Khartoum Breast Care Centre RCSI RCPI 4 Royal College of Surgeons Ireland Royal College of physicians Ireland Oncology Services in Sudan : Realities and Ambitions December 2012
  • 6. LIST OF TABLES AND FIGURES Figure 1 Gezira University established 1975. Figure 2 Map showing the seven localities of Gezira state. Table 1 Incidence rate of the total number of cancer cases in 2008 Table2 Number of cancer cases treated at Shandi Centre of Nuclear Medicine and Oncology (2009-2012) Figure 3 Departments of Shandi Centre of Nuclear Medicine and Oncology Figure 4 Contributing data sources to National Cancer Registry Figure 5 National cancer registry common cancers percentages (overall and by gender) Figure 6 Khartoum Breast Care Centre, KBCC Figure 7 Principles of Irish Oncology Services planning Figure 8 Conceptual framework for assessing access to health services (ADAY. L.A. et al 1997) Figure 9 The six building blocks of health systems Figure 10 Focus areas for future Sudan-Ireland collaboration. Figure 11 Initial steps in starting a new partnership 5 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 7. INTRODUCTION Sudan is experiencing a growing cancer epidemic with major challenges throughout the spectrum of screening, diagnosis, treatment and followup. Some of the serious challenges in this field include high incidence of advanced, difficult-to-treat disease at presentation, high cancer burden, limited resources and an unequal distribution of services in a big country like Sudan. This conference attempts to evaluate oncology services in Sudan examining all public and private oncology centres currently operating in the country. This comprehensive review will involve present realities, gaps in the services and future plans. The conference also discussed international models of oncology service provision in the Republic of Ireland and the United Kingdom with special emphasis on governance and quality management in the development of oncology centres. The need to create and maintain external links for standards setting and accreditation purposes were also highlighted. The conference was held on 17th December 2012 in Madani Heart Centre, Gezira State, Sudan. Sudanese Medical association (SMA): The Sudanese Medical Association- SMA (UK&I) is an independent, nongovernmental academic organization. It was founded in February 2010 and held its inaugural meeting in the Central Middlesex Hospital. This was attended by Sudanese healthcare professionals based in the UK and Ireland. The Association is aiming to be an agent of change and voice of reason by representing the public face of Sudanese medicine and bringing healthcare professionals together in working partnership. Membership is open to all healthcare professionals including clinicians, dentists, nurses, pharmacists and allied healthcare scientists. Members are committed to upholding professional values away from political or personal motivations. Their judgment on arising issues is influenced only by the need to develop efficient healthcare for the people of Sudan. National cancer Institute (NCI) in Gezira state: 6 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 8. The National Cancer Institute (NCI) is a potential centre of excellence established in 1992 by the University of Gezira (U of G) (Figure-1) in Wad Madani, Sudan. U of G is a community oriented university established in 1975 with a main objective of rural development. University of Gezira is located in the centre of Sudan in the Gezira State, the most densely populated State after the capital Khartoum. 7 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 9. EXCEUTIVE SUMMARY The conference was organised by the Sudanese Medical Association (SMA UK & Ireland) and the national Cancer Institute, Madani (NCI) in recognition of the rapidly rising cancer incidence in Sudan in recent years. The objective was to assess the current situation in the country in relation to cancer and plan for the future learning from international experience. All the important components of cancer control including registration, prevention, screening and early detection as well as diagnosis and treatment were addressed. National Presentations: An overview was provided by the Sudanese speakers on the history of the service in Sudan, the current situation, the issue of cancer registration, gaps in the services and future plans and aspirations. An overview of the current situation and future plans for NCI were presented by Dr Elhaj. He spoke of the dramatic rise in cancer cases in Sudan since 1999 and highlighted the national issues related to diagnosis of cancer particularly the lack of diagnostic facilities. The lack of access of cancer patients to radiotherapy is also an issue with just one cobalt machine for a population of 4 million catering for approximately 1300 new patients seen annually. Despite these difficulties the centre has been at the forefront of epidemiological research and has been involved in many training workshops with international collaborators. The hospital has established a regional cancer registry with the support of IARC. Currently in association with the University of Gezira MSc programmes in Molecular Biology, Medical Physics and Nuclear Medicine Technology are provided. Plans for the future include more inpatient beds, establishing surgical oncology, upgrading radiotherapy equipment, training of staff and strengthening research. 8 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 10. Dr Sedik Mustafa provided an overview of the RICK. The centre has witnessed the huge rise in cancer incidence in Sudan. When it opened in 1967, 250 patients per year were seen and treated compared with 7500 in 2011. The staff is well trained, most having trained in Europe and kept up to date with regional training courses provided by IAEA and other organisations. There is a lack of radiotherapy equipment as the centre has only 2 cobalts and 2 linacs to deal with this volume of patients. A big issue is a lack of ongoing maintenance of equipment which is crucial to prevent linac downtime. Another issue identified is brain drain of healthcare professionals Dr Nabeel Mohamed provided an overview of services in Shandi centre. This opened in 2009 and has an early detection programme, outpatient chemotherapy facilities, a nuclear medicine section which has facilities for treatment of thyroid cancers. Currently patients go to the RICK for radiotherapy although the plan is to have a cobalt machine with simulator and treatment planning system (TPS) as well as brachytherapy facilities in the near future. An overview was given of cancer registration in Sudan by Drs Dafaalla Omer Abuidris (NCI) and Dr Ahmed Hashim (NCR Khartoum). Cancer registration was initiated in NCI in 2006 as the first attempt to create a population based registry in Sudan. The NCI provides most of the data and Dr Abuidris highlighted the challenges obtaining data from general hospitals as well as the issues around death certification with many patients who die from cancer dying at home rather than in hospital. The data collected demonstrates that the commonest cancers in Sudan are breast, haematological malignancies and prostate cancer. Dr Hashim spoke of the National Cancer Registry NCR in Khartoum. This has been re-established in 2009. The NCR is a population based register in Khartoum state, the largest state in Sudan. Training has been provided for staff in the 9 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 11. registries with support from international partners. A big issue is the lack of understanding by policy makers of the importance of cancer registration in terms of planning for the current and future needs of a country in relation to cancer control. Dr Wafaa Elhadi provided an overview of the facilities in the Breast Care Centre Khartoum. This is a not for profit institute which opened in 2010 and focuses on diagnosis and treatment of breast cancer. Surgical and chemotherapy treatments are available. The numbers of patients treated here is gradually increasing. Professor Ahmed MohaMadani presented an overview of the situation regarding pathological diagnosis of cancer in Sudan. He focussed on the importance of accurate diagnosis to the appropriate treatment of cancer. He dealt with the need for investment in pathology so that immunohistochemistry and cytogenetics as well as cytology and frozen section are available for therapeutic and prognostic information. He highlighted the importance of both internal and external quality assurance in pathology. Currently in Sudan accreditation of pathology laboratories is voluntary but his view was that standards would be improved by mandatory accreditation and external peer review. Mr Ahmed Abuzaid, a cancer survivor presented some of the issues patients have with access to treatment, overcrowded services. He was positive however about the fact that treatments are free in the public centres. The main challenges identified by the local speakers were: *Lack of a good registration systems for cancer cases *Lack of access to good diagnostic facilities and good peer review systems to avoid errors in diagnosis *Lack of access to radiotherapy due to machine shortage and lack of any radiotherapy in certain parts of the country 10 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 12. *Lack of maintenance of radiotherapy equipment. *Brain drain of healthcare staff The International speakers discussed international models of service delivery and how Sudan could learn from experience elsewhere in relation to developing a sustainable service into the future. The need to create and maintain sustainable external links for setting of standards and developing a quality service was highlighted. Mr Ian Carter, Senior Health manager, HSE Ireland discussed the development of a National Cancer Control Programme (NCCP) from a health manager’s perspective. He spoke of the importance of planning the development of the service. The allocation of funding and resources in his view were critical to success. He highlighted the need to focus on the entire population using evidence based strategies for all aspects of cancer control from registration to palliative care. He spoke of the challenges that had been faced in Ireland in the past with a fragmented service and evidence of poor outcome in comparison with European neighbours. Centralization of services had been implemented following the recommendations of the NCCP with cancer centres capable of providing full range of diagnostic and therapeutic facilities as well as ancillary services needed by cancer patients such as physiotherapy, dietetics etc.. He emphasized the importance of maintaining standards within the programme by means of internal and external quality assurance. Dr Aileen Flavin, a Consultant Radiation Oncologist spoke on the development of Oncology services in Ireland and what Sudan might learn from Irish experience. The outcome of cancer patients in Ireland had been poor in comparison with other EU countries for many years. In response to this a National Plan for Radiation Oncology (NPRO) and a National Cancer Control Programme were published in 11 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 13. 2006. Recommendations have since been implemented that have made dramatic changes to the delivery of cancer services in Ireland. Improvements in cancer survival have been seen in parallel with these changes. The national nature of the programme which looked at the needs of the population as a whole has been integral to its success. Political support was critical as funds were allocated and ring-fenced for cancer. Strong leadership was needed and the appointment of a director of the NCCP drove many of the changes that were needed to implement the programme. Dr Faisel Mihaimeed, Director of Cancer Surgery in St Barts Hospital, London, UK provided an overview of the global burden of cancer with a focus on the situation in low income countries where cancer incidence is dramatically increasing. He spoke of the disparity between Africa and the developed world in relation to survival of cancer patients particularly childhood cancers. He discussed some of the reasons for this including lack of access to radiotherapy treatment. He spoke of the particular challenges encountered in countries like Sudan with inadequate registration of cancer cases, lack of awareness of cancer symptoms due to lack of education of the population, lack of trained personnel to deal with cancer due to “brain drain” as well as limited access to diagnostic and treatment facilities. In his view prioritizing cancer prevention is the most important priority in cancer control in Sudan given the lack of access to diagnostics and treatment. Dr David Weakliam, Head of the Irish Forum for Global Health, HSE, Ireland presented on Sudan-Ireland collaboration and the potential of institutional partnerships to improve health services. He spoke of the history of Irish-Sudanese co-operation with Irish involvement in humanitarian programmes in Sudan and Sudanese healthcare professionals working in the Irish healthcare system. He highlighted the potential of institutional partnerships to improve healthcare in both countries. The rapidly increasing incidence of cancer in Sudan in his view made it 12 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 14. an important disease to focus on. He discussed the principles of Irish Aid which are built on namely partnership, public ownership and transparency, effectiveness and quality assurance, coherence with a particular focus on creating long term programme sustainability. He discussed the factors that lead to effective institutional partnerships with a shared vision being a critical factor. Other factors leading to successful partnerships included the importance of partners getting to know each other, developing incrementally and clear communication between partners. He discussed European Esther Alliance of which Ireland is a member of whose goal it is to improve health in developing countries. Finally Dr Mohamed Ahmed, Vice-president of the SMA spoke on the SMA initiatives in Cancer Control. He provided an overview of the St James Hospital (SJH) initiative supported by the SMA that aims to build capacity through training of individuals. He spoke of the potential of an institutional partnership as per ESTHER alliance model to twin SJH with the NCI. He identified potential sources of support for this project including the Irish Cancer Society (ICS) as well as the Irish Forum for Global Health (HSE) Recommendations from the conference 1: There is an urgent need to provide specialized cancer treatment centres which incorporate the three modalities of cancer treatment( surgery, radiotherapy and chemotherapy) to serve the wider population of Sudan particularly areas remote from Khartoum 2: Funding for establishing these needs to be allocated and ring fenced 3: A strategy needs to be developed to train, employ and retain appropriate cancer healthcare professionals. 4: In order to plan for the future in terms of planning services a nationwide cancer registration programme needs to be established. 13 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 15. 5: Support should be provided from MOH to establish sustainable institutional links between NCI and overseas institutions such as SJH for training of cancer healthcare professionals as well as maintaining standards. 14 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 16. Conference sessions 15 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 17. Overview of the NCI, Madani Dr. Ahmed Elhaj , NCI Madani In his presentation in the conference; Dr. Elhaj gave an overview about NCI which was established in 1995 to meet the community needs in the fields of Oncology, Nuclear Medicine and Molecular Biology. It is one of the clinical and research medical institutes of the University of Gezira. The institute has six departments including departments of Nuclear Medicine, Oncology, Molecular Biology, Medical Physics and Engineering, Diagnostic Imaging and department of Medical Laboratories. NCI was established with the following vision: 1- Treatment and prevention of cancer. 2- Use of modern technologies of nuclear, molecular and imaging diagnostics. 3- Research in endemic diseases and cancer. 4- Training of Sudanese and African doctors, scientists, technologists and researchers. NCI has a large network of connections with international organizations and with many similar local, regional and international institutes. This network includes institutes form; Africa (Egypt, South Africa, Zimbabwe); Asia (Syria, Jordan, Pakistan, India); and Europe (Italy, France, U.K., Germany, Sweden). NCI has established relations with the International Agency for Research on Cancer (IARC). IARC is one of the WHO agencies based in Lyon, France. NCI Collaborated with IARC in establishing a population-based Gezira Cancer Registry. NCI has a long standing collaboration with the International Atomic Energy Agency (IAEA) of the United Nations. The IAEA has kindly provided NCI with technical support in terms of technology transfer and capacity building of the human resources of the institute. As a result, NCI has played a significant role in technology transfer for the service of the community, and is now recognized as a referral centre for advanced diagnostic methods in nuclear medicine, molecular biology and medical imaging not only in Sudan but in the whole East African region. It has been recognized as a central laboratory for HLA typing for Sudan which enabled NCI to provide the service to other African countries as well. 16 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 18. Figure 1: Gezira University established 1975. NCI has designed training programmes for short courses as well as full degrees. The areas covered so far are; molecular biology, nuclear medicine technology and medical physics. Three post graduate programmes are approved by the University of Gezira. These include the following: 1- MSc/PhD in Molecular Biology. 2- MSc in Medical Physics. 3- MSc in Nuclear Medicine Technology. NCI staff has developed a good expertise in various epidemiological research of cancer illnesses as well as tropical diseases such as Malaria and Schistosomiasis. Environmental and genetic determinants of several diseases were the focus of a number of studies. NCI researchers are extending this knowledge to conduct epidemiological cancer studies taking into account the potential impact of infectious diseases on cancer aetiology. In the last five years, NCI has organized a number of workshops and conferences. Notably, is the conference of the CRTC, which was held in Madani, Sudan in June 2004. The theme of the conference was: "CRTC: an Initiative for Cancer Prevention and Advancement of Health Research in Sub-Saharan Africa". The NCI has also organised short training courses on recent advances in haematological malignancies in collaboration with consultants from Queen Elisabeth hospital in the UK. NCI has established the Gezira Cancer Registry (GCR) with the support of IARC which provided the necessary soft ware and training for the registry personnel. Cancer in Gezira state: In Sudan, diagnosis of cancer is only performed in Khartoum and Gezira due to the huge shortage in diagnostic facilities. Cancer treatment is generally 17 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 19. expensive, and most of the patients cannot afford such costs in a health system that predominantly relies on its finance on out-of pocket payments. Cancer has now become among the top ten killer diseases in Sudan. Among females, breast cancer is on the top of the list (34.5%) followed by cervical cancer (14.3%). Among males, prostate cancer is the top killer. Twenty-fold increase in numbers of reported cases was observed since the first cancer centre was established in Khartoum in 1967. National Health Insurance covers only investigations and surgical procedures for limited number of cancer patients. The Government of Sudan supports the poor people through social support fund which is currently covering the chemotherapy cost only. However, public budget is clearly inadequate for cancer prevention and other treatment modalities, medical supplies and for provision of sufficient human resources. Figure 2: Map showing the seven localities of Gezira state. The total number of patients who attended NCI so far exceeded 20,000 with about 1300 new patients annually. It covers seven localities in Gezira state as shown in figure-2 with details of cancer cases and population from the year 2008 in table-1. Future development plans for NCI include; building of 110 bedded wards, establishing surgical oncology service, strengthening of research capabilities of the institute, manpower development and the improvement of the existing facilities for cancer treatment. Locality Populatin NO of cancer cases El Kamleen 401930 66 18 Oncology Services in Sudan : Realities and Ambitions Incidence rate 13 December 2012
  • 20. El hasahisa 606389 509 84 El managil 906216 193 21 Madani El kubra 423865 1226 289 Janub Elgezira 555250 866 156e Sharg Elgazira 463154 327 71 Total 3575280 3265 673 Table 1: Incidence rate of the total number of cancer cases in 2008 Overview of the Service Provision in radiation & Isotope centre, Khartoum (RICK) Dr. Sediek M. Mostafa, Radiation and Isotopes Centre, Khartoum (RICK) The Radiation and Isotopes Centre in Khartoum (RICK) was established in 1967 as the first cancer treatment centre in Sudan. The number of new cases seen in RICK jumped from 250 in 1967 to 7500 cases in 2011. As a result of this increasing pressure, there was more demand for more specialized centres for cancer treatment. The NCI Madani was established in 1995. The two centers (Marawi & Shandi) have building constructed and equipments contracted but awaiting supply, installation and commissioning. There are planned centers for ElFashir (Darfur), El-Obied (Kordofan) and Gedarif. Funding has been secured for the former of these centres. During 1960s and 1970s, RICK’s radiotherapists, nuclear medicine physicians, physicists, engineers, technologists and nurses were trained in Europe. Further training and techniques updating are generally offered through courses, with IAEA experts, scientific visits and CME courses. Brain drain of expensively trained qualified staff remains to be a major problem facing RICK. Equipment maintenance is another important challenge and despite the emergency funding 19 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 21. from the government, RICK is still in urgent need for $900,000 to update all current equipments and replacing deteriorated components and out dated software. Overview of Shendi Oncology Centre Dr. Nabeel Mohamed, Shandi Centre of Nuclear Medicine and Oncology, University of Shandi. Shandi Centre of Nuclear Medicine and Oncology commenced providing services in September 2009 as the third oncology centre in Sudan, after considerable efforts from local community leaders, university directors and political support. The hospital building which consists of four complexes is under construction since January 2010 figure-3. It consists of four complexes. As shown in table-2 the centre had treated nearly 500 cases since establishment in 2009. Tumor Type Breast Prostate Thyroid Cervix Nasopharynx Osophagus Rectum Brain A.L.L HCC RCC Lung Total Number Patients 112 85 73 57 38 32 22 15 11 7 4 3 459 of Table2: Number of cancer cases treated at Shandi Centre of Nuclear Medicine and Oncology (2009-2012) 20 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 22. The centre provides different health services for people living in River Nile state through the following five departments as shown in figure-4: Figure 3: Departments of Shandi Centre of Nuclear Medicine and Oncology 1. Oncology Department (clinic): Started in 2009 bi-weekly referring clinic. Patients were referred to Khartoum Centre (RICK) to receive radiotherapy. 2. Early Detection Unit: Started in June 2010, mainly breast and uterine cervix cancers. It consists of: Laboratory, Ultrasound machine and Minor Theater for biopsy. 3. Chemotherapy Unit: Started in May 2010. It consists of a hall of 10 chemotherapy beds and pharmacy for preparation and dispensing of doses for patients. 4. Nuclear Medicine Department: Started in March 2010. It consists of imaging unit with Single Head SPECT Gamma Camera (MEDISO). This department has a rradioactive Iodine unit with four isolated rooms. 5. Radiotherapy Department: It consists of Cobalt 60, Conventional Simulator, TPS, and mould room. Cancer Statistics in Sudan, Gezira State Dr. Dafaalla Omer Abuidris, Dean, NCI, Madani Hospital-based registry gives only rough estimation. There is huge potential to lose record of many cancer patients in Sudan as some are unable to reach the scarce cancer centres due to economical or accessibility reasons, others may die before referral and many may not be diagnosed at all due to cost of diagnostic 21 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 23. process and referral system deficiencies. Some patients may be diagnosed but decline referral and may seek alternative medicine pathways due to cultural beliefs. Gezira cancer registry (GCR) was established in 2006 as the first attempt to create a population-based cancer registry in Sudan. Sources of data includes: Oncology hospitals (NCI & RICK), main general hospitals in Gezira, main state and private pathology labs and expert reports. The contribution is so far predominated by the hosting location in NCI as shown in Figure-6. The weight of data provided by NCI in the cancer registry represents more than half of the data. There is significant difficulty obtaining data from general hospitals. Moreover, information on mortality is difficult to trace as most patients with cancer die at home in the absence of structured palliative and terminal care institutions and hospices. One of the possible future solutions is to establish regional registries. This requires provision of sufficient budget and human resources. Ongoing work in registry will improve the quality of data and mortality can become easy to estimate through use of advanced telecommunication technologies. Figure 4: Contributing data sources to National Cancer Registry As shown in Figure-7 findings from the five-year registry report in Sudan (2011) showed that total number of cases is 5762, of which 3177 were females. The most common tumor was breast cancer (1012) which constituted 17.6% of all cancers and just more than 30% of female cancers. Hematological cancers were the second commonest. The second commonest solid tumor was prostate (368) which constituted 14.3% of all male cancers. 22 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 24. Figure 5 National cancer registry common cancers percentages (overall and by gender) Overview of the Cancer Registry Services in Sudan Dr. Ahmed Hashim, Cancer Registry in Khartoum The first national cancer registry started in 1967 in Khartoum with data collected through the department of Pathology in the Faculty of Medicine, University of Khartoum. This cancer registry functioned well until the early 1980s when it stopped due to lack of funds. Cancer registry unit was launched at the NCI in 2006, and the National Cancer Registry (NCR) was re-established in 2009 as there was a necessity for cancer registries in all 17 states as a prerequisite for the national cancer control programme. The NCR is a population-based registration in Khartoum State as the biggest state and the capital of the Sudan. The main objective of the NCR is to develop a system that will facilitate all the steps and processes of creating and maintaining local and regional cancer registries and pooling them into a single central and accessible system. Reporting sources includes passive case finding through hospitals and Radiotherapy centers that employed registry officers to report cases with cancer & send the data to NCR. Active case finding is done through data obtained from private clinics and pathology laboratories that allow the registry officers to identify and access relevant data during routine visits. In April 2010 a dedicated building was allocated 23 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 25. for national cancer registry and may health facilities in Khartoum state were surveyed & focal points for these facilities were designated for registration of cancer cases. Subsequently a universal registration form was designed & piloted and registration booklets were distributed to private health facilities. Training was provided for statisticians in Khartoum, River Nile, Northern Kordofan and Northern states. Further training was also provided for registry cadre in France, England and South Africa in cancer registration. A new branch of cancer registry was established in Northern state. The building of a comprehensive cancer registry is faced with many problems including poor awareness of policy makers in Sudan about the importance of cancer registration, the lack of funding for expanding cancer registration in remote states; the poor capacity of cancer diagnosis in remote states e.g. lacks of standard pathology services and the lack of funding for surveys and screening of cancer. The future plans aim to achieve the following targets including training of human recourses (data management staff, registration officers, medical registrars). establishment of information networking with regional and international organizations, cancer registries and databases, expansion of cancer registry in all other states, production of regular biannual report, development of standardized pathology reporting system and improvement of cancer registry information system. Overview of the services in Breast Care Centre , Khartoum Dr. Wafaa N Elhadi; KBCC started in October 2010 and it is not-for-profit institution. There has been a significant increase in number of patients served by Khartoum Breast cancer centre (KBCC). This is clearly reflected in the increased number of patients who received chemotherapy (164 in 2011 compared to 330 in 2012). During 2012, a total of 2789 new patients were seen, investigated and provided with treatment compared to 1814 in 2011. 24 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 26. Figure 6: Khartoum Breast Care Centre, KBCC Cancer Diagnostics in Sudan Prof. Ahmed MohaMadani ,Gezira University Regional reference laboratories are needed (one in each state). Intermediate laboratories (at least 50 km apart) and all highly specialised tests are done in regional laboratories. The private sector is definitely providing great help. The laboratory services needs accreditation which is so far voluntary but essential. It is better to seek international recognition and accreditation. It involves regular visits and subsequent certification with reaccreditation is done periodically (every 3-4 years). The cost is a main barrier and needs national and international support. Laboratory techniques relevant to cancer care that need equipment, training and standardisation were discussed including cheap and quick tests as cytology which is needs a lot of experience and frozen section that needs special equipment ready to provide intra-operative assistance to expensive tests as Cytogentics that needs especial training and equipment, is becoming essential for accurate classification for prognostic and therapeutic decisions. Immunohistochemistry tests were also discussed with their two types including tests performed to determine cell differentiation and used for diagnostic purposes and tests that are not related to morphology but are used for prognostic and predictive purposes as (HER2/neu, ER/PR). Advocacy : Cancer Survivors Group 25 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 27. Mr. Ahmed Abuzaid Mr. Abuzaid explored the difficulties faced by Cancer patients in Sudan such as access to services, waiting times and overcrowded services. He also illustrated the benefits that patients receive such as free radiotherapy and chemotherapy interventions in public oncology centres in Sudan. Mr. Abuzaid showed a documentary film of recovery stories of a number of patients with cancer in Sudan. Development of a National Cancer Centre Model: Standards and Challenges Mr. Ian Carter, Senior Health Manager, Health Services Executive (HSE), Ireland Mr. Carter started his talk by the description of a model for a National Cancer System that addresses issues including National Control planning, Funding and resource allocation, overall systematic design (top down, focus on population as whole, adoption of evidence-based strategies for prevention, early detection, diagnosis, treatment and palliation, selection of treatment options with their cost implications comparing efficiency and effectiveness of different modalities, establishing a National data registry that can help in subsequent outcome and performance evaluation and Impact analysis through a National clinical audit programme. 26 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 28. Mr. Carter also discussed guidelines for establishing a model that should adopt a population-based health system approach that recognises and addresses inequalities with emphasis on health promotion, prevention and early detection. It should recognize key areas of focused interventions as tobacco control, and addresses the provision of population based and opportunistic screening programmes adopting simple, safe, precise, validated & cheap tests with prompt linkage to a treatment pathway if test was positive through a system that provides effective treatment and interventions with multimodality coordination of Surgery, Chemotherapy and Radiation Oncology. Optimally, the service setting should allow for analytical ability through randomised trials to detect effectiveness of interventions. In Ireland Oncology services structural reform requirements generally entail that hospital cancer centres to have internal capacity and capability to satisfy population base of 500,000 with provision of full range of general medical and surgical services including pathology, laboratory, radiology, critical surgical subspecialty services, medical oncology, curative and palliative therapies working within multidisciplinary teams. It should also provide a full range supporting staff as Full Range Palliative and Specialist Nurses, Dietetic, Physiotherapy Services, Counselling Services, Clinical and Compounding Pharmaceutical Services, Social Work Services. It should be able to provide training facilities for specialty training for health professions and research facilities including clinical trials. It should have the capacity to measure adherence and compliance with treatment protocols; maintain satisfactory quality assurance process, active engagement in accreditation a close linkage with higher education institutions and an effective linkage with Primary Care. Future collaboration can cover the following areas • International Cooperation, collaboration and partnership. • Comparison and evaluation of incidence & treatment outcomes. • Quality Assurance Collaboration, licensing, accreditation and external validation. • Research partnership and education and learning opportunities. Radiotherapy Services in Ireland: What Sudan might learn from Ireland 27 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 29. Dr. Aileen Flavin; Consultant in Radiation Oncology, Cork University Hospital, HSE, Ireland Dr. Flavin started her presentation by giving an overview of the main seven principles on which Oncology services development plans were based in Ireland shown in figure 8. She described the transformational plan of cancer service development that focussed on the establishment of four supra-regional centres including two in the capital Dublin, one in Cork city in the south and a fourth in Galway city in the west. Each centre will have access to all three modalities of treatment (surgical, medical and radiation Oncology) in multidisciplinary care with access to acute services. Regarding the radiotherapy component each centre should have at least four radiotherapy treatment Linac units with a total of just below 40 Linacs in the country whole country serving a population with over four millions. The current Radiation Oncology services in Ireland are provided by 28 Radiation Oncologists treating 29,745 patients per year achieving a 5-year survival rate of about 55%. Figure 7: Principles of Irish Oncology Services planning The National Plan for Radiation Oncology in Ireland (NPRO) 2006 recommended to have a national network of six facilities providing services under 28 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 30. four large centres: two in Dublin and one in each of Cork and Galway with two integrated satellite centres in Waterford and Limerick (managed by Cork and Galway, respectively). Patients in the North-West region can have their care affiliated to Belfast in North Ireland. Since the publication of NPRO in 2006 access has improved and national approach and collaboration in many areas such as prostate brachytherapy and stereotactic radiotherapy has been developed with collaboration with research: Radiotherapy trials portfolio and in 2012, National Guidelines radiotherapy was developed for common tumours. Dr. Flavin showed that although Ireland has a good cancer registry, cancer outcome in Ireland is worse than European neighbours and radiotherapy services in Ireland are under-utilised with some difficulties in access and lack of multidisciplinary working in some centres. Private centres in Ireland are not completely integrated in the national network so far. She then proposed potential areas that can be adopted by Sudan from Irish experience including the necessity for a national approach in the context of national cancer control plan. She flagged the concern improving radiotherapy may not have a major impact as high percentage of cancers would be advanced at the time of diagnosis. It is essential to have a functioning updated National Cancer Registry that helps in knowing extent of the problem to aid planning for future services with appropriate infrastructure with particular attention to equal access. The assistance of IAEA and WHO should be sought in developing a national cancer control plan for which the WHO document (Developing a National Cancer Control Plan) is an important resource. Developing Cancer Strategy in the under resourced Health System: Challenges & Opportunities Dr. Faisal Mihaimeed: Director of Cancer Surgery, Barts Health NHS Trust, London, UK Dr. Mihaimeed gave an overview of global cancer burden accounting for 12.5% of all deaths worldwide with more cancer attributed deaths than those die as result of HIV/AIDS + TB + Malaria combined with the expectation of annual incidence of 15 million new cases every year diagnosed globally by 2020. 70% of the newly diagnosed cases will be in developing countries, where governments are least prepared to address the growing cancer burden. Survival rates in developing countries (such as Sudan) are often less than half those of more developed 29 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 31. countries. Over one third of cancer deaths are due to preventable causes such as viral infection, poor nutrition and widespread tobacco use. In Africa, on average 5% of childhood cancers are cured, compared to nearly an 80% cure rate in the developed world. Life-saving radiotherapy is available in only 21 of Africa’s 54 countries, or to less than 20% of the population of Africa. The combined effects of cancer, poverty, deprivation and infectious diseases in many African countries, hinder the development of a sustainable population and consequently a sustainable future. Efforts to improve these poor cancer-related indicators in developing countries are faced with considerable challenges including: 1 Inadequate data collection and registration of diagnostic and therapeutic procedures and outcomes. 2 Lack of awareness and education in a population with significant illiteracy rates needs to be carefully addressed. Efforts need to be made to get the message that cancer can be treated if it is discovered and treated early. 3 Human resources shortage is one of the major challenges confronting cancer services with massive brain drain and frequent immigration to the neighbouring Gulf States with attractive irresistible financial reward. 4 Limited access to technology necessary for accurate diagnosis and effective therapy and even secure data storage and analysis. In this complicated environment to establish new up-to-date services facing these challenges that are deeply rooted and difficult to overcome in a context of poor socioeconomic status, prioritizing cancer prevention activities may be of greater importance than countries well equipped to address the complexities of providing a comprehensive cancer care service from early detection, diagnosis, treatment, follow up and even terminal care. Preventive measures include: • Improving awareness • Encouraging people to adopt of healthy lifestyles • Smoking control interventions as smoking is the single largest preventable risk factor for cancer. • Excessive alcohol consumption is strongly linked to an increased risk of several cancers. • Vaccination is now available specifically for cervical cancer. 30 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 32. Figure 8: Conceptual framework for assessing access to health services (ADAY. L.A. et al 1997) Sudan-Ireland collaboration: the potential of institutional partnerships to improve health services Dr. David Weakliam; Chair of the Irish Forum for Global Health, HSE, Ireland Dr. Weakliam started his presentation by the stressing the importance of a functioning health systems that is essential to deliver health services and interventions and the need for capacity building of key health institutions as a critical element in developing cancer services. He suggested that there are opportunities for Sudan-Ireland collaboration to provide an example for a NorthSouth institutional partnership as an effective means to build the capacity of health institutions in developing countries. He described the six building blocks of a health system shown in Figure-9. 31 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 33. Figure 9: The six building blocks of health systems Dr. Weakliam discussed the opportunity for partnership with Sudan in the development of cancer services with emphasis on the need for leadership involvement and commitment as vital prerequisite, supporting the national strategy, provision of prevention and early detection services, diagnosis and treatment facilities and palliative care. He also addressed need for partnership in organisation and management aspects and sharing learning on best practice particularly from model centres of excellence that can provide guidelines, protocols and tools for information to be nationally used in satellite branch centres. He described eight areas of focus for the potential future collaboration as shown in figure-10. And described initial steps required when building a new partnership as shown in figure-11 Figure 10: Focus areas for future Sudan-Ireland collaboration 32 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 34. Figure 11: Initial steps in starting a new partnership From Dublin to Madani: The SMA initiatives in Cancer Health Care Dr. Mohamed Ahmed; Vice president of the SMA Ireland Dr. Ahmed gave an overview of St. James’ Hospital (SJH) Initiative that aims to build institutional capacity through training of individuals. SJH could assist in providing guidance in many areas including identification of strengths, planning to improve provision and utilisation of resources, accreditation cycle through training, support and peer review, mutual visits and placements for Sudan health professionals in SJH, providing a twinning model similar to the European ESTHER Alliance model that Ireland joined in Feb 2012 and provides institutional capacity building activities through twinning between hospitals of the North and hospitals in developing countries. The twinning should meet certain criteria and allows provision of some funding. This conference is a platform to create such links for the future twinning between the Oncology divisions in SJH-Ireland & NCI, Madani-Sudan. Potential support can be sought through the Irish Cancer society. Irish Cancer Society is a charity organization and a strong advocate for improving Irish cancer services. It is the main provider of cancer information for prevention, detection, treatment and support in Ireland. It provides large numbers of information leaflets & booklets in simple language. The SMA UK & Ireland got Irish cancer Society permission to translate all of their Cancer info material into Arabic. Translated booklets and leaflets will be available in Sudan in both 33 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 35. electronic and paper formats. The Irish Forum for Global health will provide logistic & advisory support to the project in Ireland. 34 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 36. CONFERENCE RECOMENDATIONS There is an urgent need to provide more specialised cancer treatment centres (with 3 modalities of treatment) to serve the wider population of Sudan especially in areas distant from Khartoum such as Kordofan, Darfur and East of Sudan. Funding for establishing such centres should be provided and ring fenced. Human resources policy to train, employ and retain health professionals in the area of cancer treatment. A nationwide cancer registry programme should be established in Sudan in view of the current fragmented registry services in Khartoum and Madani. The National Cancer Registry should undertake epidemiological studies investigating prevalence and burden of cancer diseases. The outcomes of such studies should help in planning cancer services in a costeffective model. Sudan is developing a national cancer control strategy and this provides an appropriate framework for collaboration. Support provided by Irish institutions should be in line with Sudan's national strategy. There are good reasons to establish a direct institutional link with the NCI. It already serves a large population base. It is well placed to develop services with the new hospital being built, good institutional leadership, committed doctors and strong community/political support. Its throughput is less that of RICK so there is plenty of scope to expand services. In order to achieve better outcomes there is a need to shift from late treatment/palliation to early detection and treatment. While there are many institutions in Ireland which could provide support it makes sense for NCI to establish a strong link with one institution, i.e. SJH. Through this link connections can be made with other centres and organisations as indicated (e.g. National Cancer Control Programme, Cancer Registry) 35 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 37. It is appropriate to focus initially on oncology services. However opportunities to support the full range of services should also be considered over time - i.e. including prevention, early detection and palliative care. In order to develop an appropriate programme to support services development at NCI, it would be important for senior clinical staff to visit and get exposure to cancer centres and services in Ireland. SJH (Ian Carter) has offered this invitation and will further communicate with NCI. We should be mindful that Sudan will not exactly follow the Ireland model - for instance nursing and AHP staff play a more limited role in Sudan and it will take some time to strengthen their role and develop a multidisciplinary team approach. Through a visit to Ireland, NCI clinicians will get insights into what can be strengthened in Sudan and a programme can be tailored accordingly. An institutional linkage with SJH offers the potential for a range of service quality improvement measures, from individual training to institutional accreditation. Up skilling of existing staff is a priority as the IAEA report identified that current staffing levels are adequate. Training could include short visits to learn a particular skill (few weeks - month) or longer for more formal training programmes (e.g. certified nursing course). Access to specialist training for doctors in oncology/radiation oncology is not feasible due to the very limited places in Ireland. An option worth exploring is whether Sudanese doctors could be facilitated to fill vacant service posts on a time bound contract and get some recognition for experience and participation in training activities. There would be a reciprocal benefit to Ireland through the filling of vacant NCHD posts. This would require discussion with the HSE and the respective training bodies (RCSI, RCPI and Sudan Medical Specialisation Board). Something similar has been tried in the UK. 36 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 38. Annex 37 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 39. Conference Programme 38 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 40. 39 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 41. 40 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 42. Photo Gallery 41 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 43. Meeting with the Minister of Health in Gezira State Meeting with NCI Clinical Team 42 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 44. Meeting with the Vice President of University of Gezira One of the conference sessions 43 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 45. One of the conference sessions The visit to NCI, Madani 44 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 46. IEA Report 45 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 47. Diagnosis and Treatment of Cancer in Sudan: IAEA Report Diagnosis and treatment of cancer in Sudan is managed primarily at three centres, including the Radiation and Isotopes Center Khartoum (RICK), National Cancer Institute and Shandi Cancer Center. There are some cancer-related services provided at secondary and tertiary hospitals, and notably less at the primary level. The referral system for cancer in Sudan is also noted to be weak. Efforts are being made by the government to scale up cancer services at the primary health care level, notably in prevention and early detection. A pilot study is being undertaken from 2012-2013 to integrate cancer services in seven states into primary health care. Training Tools, provision of supplies and training courses are included in this plan. Under its Cancer Advisory Committee within the Federal Ministry of Health, two standard case management protocols for breast and prostate cancer have been established. However, it was noted that these have not yet been widely distributed due to lack of funds for publication and distribution. Encouragingly, interest on the part of investors to establish and strengthen health facilities has been demonstrated recently. For instance, an extension of RICK (opening of the Amil, or ‘Hope’ Tower) was made possible three years ago through a US $6.7 million grant from the Islamic Development Bank. Many of these projects are responsible for inviting foreign experts for short periods of time to Sudan. However, a challenge facing Sudan is the often dramatic currency 46 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 48. fluctuations that serve as an obstacle to investors. Most cancer-related services are available for free or are relatively inexpensive. Missing diagnostic investigations are referred to private centers, which can be up to 300 times more expensive. Some tests have a waiting list of up to three weeks. Of the approximately 10 000 new cancer patients diagnosed in Sudan every year, RICK receives an estimated 7 000 – 8 000 patients while another 1 300 are seen in NCI. As earlier mentioned, there are published treatment protocols for breast and prostate cancers. However, these protocols are not widely distributed to oncologists, and as result, recommendations are often not followed. Radiation and Isotopes Centre Khartoum (RICK) RICK is the main referral center, treating the largest number of cancer cases in Sudan. Almost fifty per cent of female cancers seen at RICK are breast (2530%) and cervix (12%). The predominantly prevailing male cancers are 17-20% prostate, 10-12% head and neck followed by cancers of the oesophagus. Instituted in 1967, RICK recently underwent an expansion due to a grant provided by the Islamic Development Bank (IDB). The Amil Tower (‘hope’ in Arabic) is connected to RICK and was instituted three years ago. There are 100 beds for patients. The department of radiation oncology has four external beam machines (two linear accelerators, two Co 60). The external beam machines work in three shifts starting from 6:00 a.m. to 2:00 a.m. for the Co-60 machines (shifts begin at 8:00 a.m. for the linear accelerator). On a typical day, 47 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 49. 190 - 200 patients are treated on all machines. The waiting period ranges from one day to three months depending on curative or palliative intent. Seventy per cent of patients are treated with palliative intent and the remaining thirty per cent curative. The department has one HDR brachytherapy BEBIG machine. Staff at RICK stated that repair and maintaining uptime of radiotherapy equipment is a challenge. As there is neither a maintenance contract nor budget for maintenance of equipment, machines can sometimes be out of order for several months at a time leading to insufficient radiotherapy provided to cancer patients. A quality assurance programme for radiotherapy is in place at RICK.The staff is comprised of 25 radiation oncologists, 65 radiation technologists, 10 medical physicists and 10 biomedical maintenance engineers. With regards to nuclear medicine, RICK is equipped with a SPECT gamma camera, a radioiodine facility, isolation rooms, and staffed with four nuclear medicine specialists and 16 nuclear medicine technologists. In diagnostic radiology, RICK has two conventional X-ray machines, an ultra-sonography machine, CT machine, three radiologists and five technologists. There are an estimated 500 paediatric cancer cases per year in Sudan, of which 40 percent are treated at RICK. There are fourteen paediatric beds available, and another eight were being prepared to be opened at the time of the mission. Roughly 30 paediatric patients are seen per day. For chemotherapy, eighty beds are available for male and female patients. Chemo radiation is being used for 25 patients daily. Overall, 140 - 150 patients receive chemotherapy daily. Cancer patients requiring surgery are referred and undertake procedures outside RICK. The clinical pharmacy started in 2007. 48 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 50. National Cancer Institute (NCI) The NCI at the University of Gezira (formerly the Institute of Nuclear Medicine Molecular Biology and Oncology – INMO) has been in operation for thirteen years and provides cancer services. The NCI is based in Wad Madani, roughly three hours from Khartoum. NCI features two buildings, one of which is currently undergoing a US $18 million construction for expansion of the hospital. The new building will be comprised of five floors and 120 beds. Once completed, the centre will have capabilities in chemotherapy, surgery, radiation, operation theatres, palliative care and iodine therapy (as a part of nuclear medicine). The centre also has a hospital-based cancer registry which seeks to cover the four million people living within Gezira State (of the 30 million total population of Sudan, as per 2008 census), in addition to surrounding states. The radiology department is equipped with one MRI scan investigating 20 patients per day and one ultrasound machine testing 25 patients daily. Conventional radiology is also available. The radiology staff includes two specialists and six radiographers. The nuclear medicine department is equipped with one gamma camera and one SPECT. The staff is comprised of two specialists, four radiographers, two pharmacy technicians and one radiopharmacist. NCI also has a well-equipped molecular laboratory with four machines for tissue typing, used primarily for renal transplant, liver transplant and dialysis. The laboratory has also analyzed tumour markers and hormone profiles. There is one pathology laboratory that conducts routine pathology studies (including blood studies). Six staff members work in the laboratory. Regarding radiotherapy, the centre is equipped with one Co-60 machine operating daily from 8:00 a.m. to 6:00 p.m. which treats sixty patients daily. The waiting 49 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 51. list is one week for patients beginning radiation therapy. Treatment and dose schedules are radical and curative for fifty per cent of patients and palliative for the remaining half. The centre does not have a brachytherapy machine and a request to the IAEA has been put forth for a high-dose rate brachytherapy machine. An old LDR machine has not been functional for the past ten years. According to 2011 data, the centre treats an estimated 1 300 patients per year with radiation. Much like RICK, staff at NCI noted difficulties in keeping equipment up and running on a consistent basis. There are no budgets or maintenance contracts in place for the majority of equipment at NCI. There are no trained service engineers on staff at NCI who are able to repair any out of service equipment and obtaining maintenance from abroad under the present circumstances remains a challenge. A quality assurance programme for radiotherapy is established at NCI. The centre is equipped with 15 dedicated chemotherapy beds. Chemotherapy is provided at no cost to the patient and an average of 25 patients is seen daily. NCI presently has 47 inpatient beds for males and females. The centre has two paediatric oncologists who are treating one hundred patients annually. For male and female patients receiving treatment at NCI, a 50-bed boarding house is made available for longer-term stays and is located in the vicinity of the hospital. The house hosts a kitchen for patients and families staying at the facility, and offers patients (who sometimes travel from neighbouring countries) a chance to finish treatment while remaining on site. Shandi Cancer Centre Shandi Cancer Centre is a university based center. Shandi University Hospital has 50 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 52. one clinic, the ‘older’ Shandi Centre, which treats an estimated 375 new cancer cases per year (an estimated 75 of these cases are referred from RICK). Diagnosis services (except for nuclear medicine) are located in the hospital campus. Hematology, parasitology, microbiology and histopathology laboratories (no immunohistochemistry) are well equipped and staffed. Radiology services include conventional X-ray, ultrasound and CT scan; a radiologist and three technologists make up the staff. There is neither a mammography unit in the hospital nor a colposcopy unit. The nuclear medicine service is located in the cancer unit. The facility is equipped with a gamma camera and staffed by two technologists, one medical physicist and one nuclear medicine physician (currently training in Egypt). A very small number of cases are seen, since only one Technetium99 generator per month is procured from Turkey. Surgery is mostly performed at the surgical departments of the hospital or in Khartoum and then sent for chemotherapy and follow up in Shandi. The center has a chemotherapy service that is run by one clinical oncologist who travels from Khartoum once per week, typically examining 30 patients per visit. The service is a day care service with 15 beds and a centralized area for chemotherapy preparation (with a laminar flux cabin). One clinical pharmacist and three nurses treat 10-12 patients per day. There is currently no radiotherapy service at the center. Two oncologists are currently in training. Though not yet ready to receive cancer patients, the Shandi Cancer Center has a new campus under construction. Consisting of five buildings, the new centre is 51 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 53. about to open. In the new facility (located outside of the university hospital campus), the main building will host radiotherapy and chemotherapy services. Radiotherapy equipment has already been procured and consists of one “Equinox” cobalt therapy unit, one conventional simulator, a 2D treatment planning system (TPS) and a brachytherapy unit (with cobalt sources). Staff for this service will be available when the centre opens, and will be comprised of two clinical oncologists, two medical physicists, and two RTTs. A nuclear medicine service will also be added to the treatment facility. The new center will have two inpatient wards, a day care unit for oncology ambulatory treatment and radiology department. Additional Sites Khartoum Teaching Dental Hospital is a government hospital that treats 250 patients annually with head and neck cancers. Most head and neck cancers that present at the hospital are late-stage cancers among men aged 31-40 and are referred to RICK for radiation and chemotherapy. Cases requiring surgery are seen by three head and neck surgeons who perform complex resections and reconstructions at the hospital. The hospital has four operating rooms and 50 beds. In 2006, 155 cancer patients were seen at the hospital. Two- hundred and fifty were seen in 2011, and raise of awareness among the population about ‘the bad disease’ (as cancers is sometimes referred to among the general population) is seen as the cause. Rabat University has an ambitious plan to construct a US $14 million cancer center in Khartoum. To date, land has been secured for the project though lack of funding has delayed the project. 52 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 54. Khartoum Breast Center is a privately owned, state of the art breast centre that commenced operations last year. Staff from the centre claimed that they suffer from currency fluctuations and few patients, since many nationals who can afford treatment prefer travelling abroad. The breast center in Khartoum Hospital opened in 2005 which has four surgeons and four medical oncologists as staff. Most cases are advanced and require mastectomy and/orchemotherapy. Reconstruction has been recently introduced. There is currently a five months delay for treatment, and treatment is not free for patients. There is no MRI capability. They refer mammography to private centers. Royal Care Private Centre is a private multi-specialization hospital. The surgical department is made up of three general surgeons, one vascular surgeon and one neurosurgeon. There is one clinical oncologist on staff taking care of chemotherapy for referred cancer patients. Royal Care has a clinical p harmacy department. The hospital demonstrated interest in acquiring radiation oncology facilities. The oncologist informed the team that Royal Care’s plan was for one linear accelerator, one planning system and one CT simulator. Bunkers for two machines have been designated in the basement. Alneelin Diagnostic Clinic is a private facility with nuclear medicine and radio diagnostic capabilities. The centre has a SPECT Single Head Gamma camera, one MRI scan, one CT Scanner, one Mammography machine, one ultrasound (alone), one ultrasound with Doppler facility, addition to endoscopy facilities one conventional x-ray, in (Including Gastroenterology, cystoscopy, echo cardiography, EEG, ECG, lithotripsy and blood studies). The centre works in two shifts and some services are available for 24 hours per day, seven day per 53 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 55. week. The staff included seven doctors on permanent staff and seven working on a Shift basis. Khartoum Maternity Hospital is the oldest and largest women’s hospital in Sudan. The hospital has one gynecologist oncologist on staff. The hospital gives special attention to the early detection of cervical cancer. 3.7 Assessing Sudan’s Radiotherapy Needs When devising a radiotherapy plan, it is advised that the plan be designed in phases based on the quantity and complexity of the equipment and the human resources needed. The plan specific for radiotherapy should be integrated within the larger National Cancer Control Plan. According to GLOBOCAN 2008 data, there are 21 860 new cancer cases in Sudan per year. As it is recognized that 60% of patients will require radiotherapy during the course of treatment, approximately 13 116 cancer patients will need treatment annually. Sudan presently has two linear accelerators and three Co-60 machines in working order for a population of 30 million. However, these machines are present in only two centres in two adjacent states (Khartoum and Gezira) and do not cover the whole population. The impact team endorses the government’s plan to develop five new centres with additional machines to meet the radiotherapy needs of Sudan. Since one radiotherapy machine can treat an estimated 500 patients per year, it is foreseen that 26 radiotherapy units would be required to serve the needs of 54 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 56. cancer patients in Sudan. However, the requirement of 26 teletherapy units is made on the assumption that all patients with cancer in Sudan would seek treatment. At present, the number of patients in Sudan seeking treatment with radiotherapy (and other interventions) is expected to be less than those expressed by • GLOBOCAN estimates due to the following reasons: Access, whether geographic or economic. Given the large distances that patients must travel across Sudan to seek treatment, many patients may not have the financial means to support transportation costs. Further, patients and families must have sufficient financial resources to arrange for accommodation and other requirements for the duration of treatment in Khartoum or Wad Madani; • Sub–prescription of treatment, often attributable to the lack of specialized knowledge by doctors in charge a patient’s treatment; and • Overcapacity of radiotherapy treatment centres. Often, overloaded radiotherapy centres cannot accommodate a large influx of patient demand, or must delay treatment for patients who present at late stages of disease. As per IAEA staffing recommendations (one radiation oncologist per 250-300 new patients), radiation oncologist staff is adequate in both RICK and NCI (25 radiation oncologists for 7000+ patients at RICK and three oncologists at NCI for 1300 patients), though a continuous professional development program needs to be instituted so that trained staff can be retained. The number of radiation therapy technologists is adequate as per IAEA recommendations. Given the IAEA guidance on medical physicist staffing (one medical physicist per 400 patients), the current 15 working in Sudan would need to be coplemented to meet a recommended 21. Staffing requirements would need to be reassessed given the planned expansion of radiotherapy services in the country. With respect to training and human resource development, a training programme for radiation Oncologists was started in 2002 and is under the Medical Council. Currently, 34 radiations Oncology registrars are under training; of those, nine are in their final year. Fifteen such Students have graduated from the programme 55 Oncology Services in Sudan : Realities and Ambitions December 2012
  • 57. in the last five years. Medical physicists also receive training and obtain a Master’s of Science Degree. The radiation therapy technologist course is offered and is of four years duration. Under the programme, training is conducted in both radiodiagnosis and therapy. The IAEA provides guidance on the assessment of radiotherapy needs and further recommendations on setting up a radiotherapy programme1. 1 Setting Up a Radiotherapy Programme: Clinical, Medical Physics, Radiation 1 Protection and Safety Aspects:http://cancer.iaea.org/documents/Ref5- TecDoc_1040_Design_RT_proj.pdf Planning National Radiotherapy Services: A Practical Tool: pub.iaea.org/MTCD/publications/PDF/Pub1462_web.pdf http://www-