We came to this country later in our careers. Over the last five years our focus has been on childhood disability, and now our clinical work, teaching and research and our learning from these areas help provide input into national health policy.
We’re still asking the same questions we were at the outset. Is our work relevant and appropriate to the people we’re serving? Is it building up the existing local services? How do we judge the outcomes and what work is most effective?
As an indication of the value placed on our work, the government has given us several awards this past year. We are now being invited to assist with training at government hospitals and rehab establishments with the blessing of the health minister and other key paediatric health professionals.
How did we get to this point? By growing relationships, building credibility, being consistent in our work and generous with our time. Part of the journey has been accepting payment, which is culturally important as work that is paid is valued.
Our data collection has found that severe neonatal jaundice has a significant impact. By improving this area alone, a particular type of disability in children could be reduced by as much as a third (more than 500 children each year!). I realised that although local people could have collected this data, they do not yet have the training to interpret it. Wisdom is needed to avoid shaming anyone as we present these findings at national forums and to local health professionals. Instead we highlight ways local professionals can reduce disability and improve longer term outcomes for those with a disability. One leading doctor said I presented difficult information, but in a nice way. Another doctor was shocked to learn this information, but it motivated him and others to work within their systems to bring about change.
I was invited to write national guidelines on disability management for people with this condition. Patience has been important. The passage of the document through all stages to approval took more than a year and involved addressing sensitivities about some local treatments. This process has resulted in deeper understandings of the importance of evidence-based medicine and the guidelines are now a Health Ministry document. The head paediatric neurologist endorses all the work I am willing to do and has asked me to assist in training his junior medical staff.
There have been some key issues in bringing about change that will have long-term impact on this country. Fostering key relationships has been crucial. Linking with existing government agencies and other NGOs has allowed many local professionals and key people to be rewarded for our work with them. Patience and respect has helped them to accept change because we have had to challenge their local thinking on therapies that are not evidence based.
We recently spent two weeks at a camp for children with disabilities. The journey took several stages: first, six hours by road to the capital, then an extended 13–hour trip in a loaded minibus over three mountain passes to our final destination. We did clinical consultations with over 100 children, their families and local medical professionals. I was able to reassure an anxious mother that her son’s condition would not deteriorate. She could give up her vigilance and let the boy be as active as she liked.
Bringing real change to this nation is what our Father is about, and we are part of that process. Matthew 5:48 (NEB) says, “There must be no limit to your goodness as your heavenly Father’s goodness knows no bounds”. Openly sharing faith is banned but bringing goodness is not and many conversations are occurring about who we are and why we are here. We like it: it is challenging but it is good.
The authors are doctors serving in a remote part of Asia.
Names have been changed.
Services and support for people with a disability and their families.
TangibleLove.org.au is a place where you can buy a gift or contribute to a project so that people in need can achieve those intangible things we all need to flourish.