Professional Documents
Culture Documents
Conference Report
Sudan
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.
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Table of Contents 2
Abbreviation 4
Introduction 6
Executive Summary 8
Conference Sessions 15
22
Cancer Statistics in Sudan and Gezira State
23
Overview of cancer Registry Services In Sudan
24
Overview of the KBCC
28
Radiotherapy Services in Ireland: What Sudan Can Learn
34
From Dublin to Madani: The SMA initiatives in Cancer Health Care
Conference Recommendations 36
Annex 38
Appendix 1: Conference Programme 39
U of G University of Gazira
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.
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.
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
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.
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.
*Lack of access to good diagnostic facilities and good peer review systems to
avoid errors in diagnosis
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 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
4: In order to plan for the future in terms of planning services a nationwide cancer
registration programme needs to be established.
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 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:
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.
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.
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.
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
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.
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.
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.
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%.
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.
Dr. Faisal Mihaimeed: Director of Cancer Surgery, Barts Health NHS Trust,
London, UK
• 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
Figure 8: Conceptual framework for assessing access to health services (ADAY.
L.A. et al 1997)
Dr. David Weakliam; Chair of the Irish Forum for Global Health, HSE, Ireland
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
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.
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.
The outcomes of such studies should help in planning cancer services in a cost-
effective model.
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)
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).
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.
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.
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 (25-
30%) and cervix (12%). The predominantly prevailing male cancers are 17-20%
prostate, 10-12% head and neck followed by cancers of the oesophagus.
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.
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 is a university based center. Shandi University Hospital has
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.
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
Additional Sites
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.
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, one conventional x-ray, in
addition to endoscopy facilities (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
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
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 radio-
diagnosis and therapy.
The IAEA provides guidance on the assessment of radiotherapy needs and further
recommendations on setting up a radiotherapy programme1.
1
1
Setting Up a Radiotherapy Programme: Clinical, Medical Physics, Radiation
Protection and Safety Aspects:http://cancer.iaea.org/documents/Ref5-
TecDoc_1040_Design_RT_proj.pdf Planning National Radiotherapy Services: A
Practical Tool: http://www-
pub.iaea.org/MTCD/publications/PDF/Pub1462_web.pdf