Beginning at the end of the chain…
Philosophy and approach
The strength of the IF-programme is that it started from a Parents organisation. All board members and partners in the North either have spina bifida and/or hydrocephalus themselves or have a child with these conditions. They have experience in the Northern health systems delivery as patients.
Healthcare is organised starting from the ministry of a country through many structures, hospitals, security systems and different actors. This long chain of entities has the care of the patient as their main goal. But patients are at the end of the chain.
It is known that also in the North systems have many shortcomings; improvements have been made in patient care after research showed that overloaded and fragmented services resulted in unsatisfactory patient support. Feedback from parent and patient organisations on an ongoing basis is a pre-requisite for improving services. These organisations have contributed to the development of a co-ordinated holistic approach for their members.
This knowledge was and is still used in the approach and philosophy of the IF- programme for early detection, treatment and rehabilitation of children with spina bifida and hydrocephalus in developing countries. The programme starts at the end of the chain. How does the available care system respond to the daily problems of the poor patients and their families in the developing world?
What is the potential locally?
Where does the health care system fail?
What is the integration in school, the workplace and society in general like?
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 the if-programme empowers the poor 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 neuropeadiatrics.
Listening to the parents’ stories, the programme receives information on the causes of the disabilities. This is the heart of the prevention programme in which folic acid, vaccination and improving the local general health system are vital elements. The IF-programme does not set up or fund a complete health care system for their target group but improves the existing potential. The main input is empowering parents'- and patients' organisations, 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 poor patents with spina bifida and hydrocephalus is at the same time developing the capacity to solve many other medical problems. Examples of good practice: In the past 5 years the IF- programme developed several examples of good practice in co-operation with our local partners.
This has resulted in the development of:
- parent groups
- training material
- an effective CBR approach
- good surgery at low cost
- efficient pre- and post-operative care
- long-term rehabilitation and integration
- a neuro-paediatric approach
Expertise is being improved by responding to input from parents. Exchange of knowledge between the different projects is the most effective and the best cost- benefit approach. These examples of good practice need further development. Permanent feed back from ‘the end of the chain’ is the main drive, guide and motor.
This ongoing process of building-up knowledge needs scientific back-up for influencing national policies on general health care and prevention campaigns.
Therefore the IF- programme needs to initiate research on:
- Incidence and prevalence of spina bifida and hydrocephalus;
- Effects of food and living habits on the incidence of spina bifida and hydrocephalus;
- Effect of prevention campaigns;
- The potential for reducing the incidence by improving the health care system;
- Incontinence management and care for kidney deterioration in developing countries;
- Rehabilitation and integration in school, work place and society;
- Possibilities and effects of Third Ventriculostomy in developing countries.
Results of these research projects will be published in international medical and non-medical journals.
A ten year plan needs space for ongoing modification
The complexity of organising an effective care system for poor children with spina bifida and hydrocephalus demands a flexible plan that is open to ongoing modifications as conditions change.
Flexibility has been the key to the success of the programme for the past five years. For the next ten years a framework is needed that allows a differentiated approach in the regions with the possibility of sustaining and improving the existing projects and extending the programme to new projects, regions and countries.
The programme will concentrate on
- Parent involvement and empowerment of target group
- On-going evaluation involving the target group
- Consolidation and elaboration/expansion of existing projects
- Prospecting of new projects
- Exchange of information and expertise, and training on all levels
- Prevention strategies
- Research and publications