From a solidarity point of view, IF sees it as an obligation to look beyond borders. As an international organisation, we expand our support to those most in need in developing countries. IF's International Solidarity program in developing countries started in 1993, and is being financed through several of our member organisations from Sweden and Norway. The goal is to prevent Spina Bifida and Hydrocephalus in the first place and, for those born with the conditions, to improve the inclusion of people with Spina Bifida and/or Hydrocephalus in society and facilitate access to treatment, lifelong care and knowledge for people with Spina Bifida and/or Hydrocephalus and their families. It is an ongoing process in which IF is trying to translate the latest knowledge of the North into realistic care for the South.
Both Spina Bifida and Hydrocephalus are complex conditions asking an appropriate and adequate approach and lifelong follow-up care. To achieve this, information and training are needed. The multidisciplinary approach makes it a pars pro toto for the whole healthcare system. With the right approach people with Spina Bifida and/or Hydrocephalus can become active citizens. While healthcare delivery and service delivery in general are poor in developing countries, the situation is even worse for disability services. There is a tendency to exclude persons with disabilities because of negative attitudes, stereotypes, insufficient believe in their capabilities and unsuitable facilities/physical and social barriers, amongst other challenges. Public institutions often lack strategies to ensure that the rights and needs of persons with disabilities are met. Without correct and timely treatment, the prognosis of children with Spina Bifida and/or Hydrocephalus is very poor. Their condition worsens, secondary disabilities such as blindness and cognitive impairment develop and children risk dying. The disastrous outcome of untreated and incorrect treated children contributes to the downwards spiral where negative outcomes leads to further loss of hope and believe in the future of these children, by healthcare workers, parents and society in general. Where there is no hope and believe, health systems and governments stop looking for solutions to improve the care for children with Spina Bifida and/or Hydrocephalus. Without solutions, more children will become victims of a failing health system and end up with a poor diagnosis, confirming the image of negative outcome for children with Spina Bifida and/or Hydrocephalus.
Only when successful medical and lifelong care is provided, with positive outcomes as a result, people will start believing in the future of their children. This will gradually change the image of children with Spina Bifida and/or Hydrocephalus and reduce the current stigmatization.
IF believes in the set-up of a S.H.I.P. in each country, a Spina bifida and Hydrocephalus Interdisciplinary Program, which brings together all stakeholders in care, from the child/adult with Spina Bifida and/or Hydrocephalus and their care takers, nurses, physio- and occupational therapists, social workers, psychologists to the physicians and surgeons. All stakeholders have to work closely together to ensure the best possible care for those with Spina Bifida and/or Hydrocephalus.