Beginning at the end of the chain..
IF looks with the families at what is needed to improve their life and how the local health system has to be improved, so that their children can reach their full potential. The advantage is that all input is used to benefit the target group directly. A realistic view of their problems is described in terms of: - where have successes been achieved? - what went wrong? - why? - what can IF do to improve the local situation? Beginning at the end of the chain, IF's International Solidarity program empowers the families and contributes to the improvement of the entire health care system. From bottom to top; from daily care to research and prevention; from CBR to neuro-paediatrics.
IF's International Solidarity program does not set up or fund a complete healthcare system for the target group but improves and empowers the existing potential. The main input is empowering support groups, training of the existing staff at all levels and sharing information and expertise. Directly and indirectly this has a positive influence on the entire care system of a region. A health system that learns to take care of people with Spina Bifida and/or Hydrocephalus is at the same time developing the capacity to solve many other medical problems.
Expertise is being improved by responding to input from parents, professionals and the persons with Spina Bifida and/or Hydrocephalus themselves. Exchange of knowledge between the different projects is the most effective and the best cost- benefit approach. Permanent feedback from ‘the end of the chain' is the main drive, guide and motor.
The objectives of IF's International Solidarity program:
To improve quality of and access to medical and lifelong care
To increase awareness and knowledge on SBH
To improve owner- & leadership of people with SBH and their caretakers
To increase preventive measures
The overall strategy to reach these goals is to complement the existing efforts, by building on what has already been achieved by parents and existing service delivery systems.
Target groups of the project:
Children, youth and adults with Spina Bifida and Hydrocephalus
(primary) caretakers of people with Spina Bifida and Hydrocephalus: parents/family
Caretakers of people with Spina Bifida: professionals
SHIP - Spina Bifida and Hydrocephalus Interdisciplinary Program
Since 2003, IF has been organising an annual African workshop with a specific focus that changes every year.
2003 Moshi, Tanzania: Management of the neurogenic bladder in children with spina bifida and spinal trauma
2004 Mbale, Uganda: Hydrocephalus, surgery and further care for the development of the child
2005 Nairobi, Kenya: Parent group work within the IF projects
2006 Nairobi, Kenya: Project Management
2007 Kampala, Uganda: Prevention (combined with the 18th annual IF conference "Tomorrow")
2008 Arusha, Tanzania: Parental hope
2009 Limuru, Kenya: Inclusive education
2010 Dar es Salaam, Tanzania: Strengthening Parent Groups
2011 Kampala, Uganda: Sailing off - Interdisciplinary care
2015 Lusaka, Zambia: Lifelong Care
With the aim to eliminate untreated hydrocephalus and its preventable causes, the CH Surgeon Training Program was set up as a partnership between IF, CURE International and the Karl Storz Company (Storz). It is designed to utilize the expertise derived from continuing research from the efforts at CURE International Children’s Hospital of Uganda (CURE Uganda) and its sister facilities, including CURE Zambia. The program trains and equips surgeons responsible for treating Hydrocephalus in developing countries.
In that practice context, shunt-dependence is more dangerous for children with Hydrocephalus because of the high probability of shunt malfunctions that require urgent attention and emergency treatment. Unlike more developed countries where the existing economy, infrastructure, and health care system can more readily support the emergency maintenance required for patients who are shunt-dependent, the lives of such children in less developed countries are threatened because of the lack of prompt access to proper neurosurgical care.
Since its opening in 2000, the CURE Uganda hospital in Mbale, Uganda, has demonstrated that, in the setting of an emerging country, more than half of all children with hydrocephalus can be adequately treated using endoscopic methods, and the likelihood of success can be determined in advance. In young infants, our experience was similar to that of others, in that ETV alone was not effective in avoiding shunt dependency for the majority. But we demonstrated that choroid plexus cauterization in combination with endoscopic third ventriculostomy (ETV/CPC) was significantly more effective than ETV alone. The ETV/CPC technique requires the use of a flexible fiberoptic endoscope in order to access the choroid plexus throughout both lateral ventricles.
The CURE International facilities in Uganda and Zambia (and soon elsewhere) provide the high volume of patients necessary to master these techniques in a relatively short time. In two or three months, a trainee can expect hands-on training in 50 to 100 ETV/CPC procedures. Serving as Sr. Medical Director for CH, Professor Dr. Benjamin C. Warf directs the training and research efforts. Dr. Warf developed the ETV/CPC technique and the methodology for its most effective use while serving as medical director for CURE Uganda for over six years. For surgeons from less developed countries, CURE International, IF and Storz will work with the trainee to acquire funding to help support their training as well as to help provide the necessary endoscopy equipment for their home institution.
The goal of the CH Surgeon Training Program is to develop a network of surgeons and hospitals throughout the world that are competent to offer this treatment option and thus avoid as much as possible the dangerous problem of shunt-dependence, especially for children in economically depressed regions. As part of this effort, each CH trained surgeon participates in supplying information to the CH database in order to expand the body of knowledge to improve on our ability to treat and prevent this common condition.
How to apply: Surgeons interested in the CH Surgeon Training Program can find the application documents here.