“ Children’s palliative care is often seen as care for children with HIV. However, there is a large number of children with conditions other than HIV who require palliative care e.g cancer, genetic anomalies, neuro-degenerative conditions, metabolic conditions, organ failure, disabilities, severe malnutrition and many more conditions. Why do most programmes neither identify nor admit these children and what other support would be available in our communities and in this country for these children.”

I think that HIV/Aids has had so much publicity and the fact that it is seen as a disease that one can die from;it's okey for palliative care to be given there. Cancer in children also has a higher level of awareness than some of the other diseases that you mention thanks mainly to the work of CHOC, the Childhood Cancer Foundation and the fact that it is a very emotive disease. Sadly, there is no one to advocate for some of the other conditions and yet I am sure that many more children suffer from malnutrition than cancer; but because it is not as "emotive" say as HIV or cancer and it is generally not a disease of the wealthy and educated (although that is debateable as many children who are overfed the wrong foods are in fact suffering from malnutrition - they just don't know it yet!)who perhaps could know how to advocate for them, they get left behind.

Eventhough I mainly work with children infected/affected with HIV/AIDS it is of great concern that other diseases gets neglected.
What about our children suffering from the various muscle dystropy syndromes?
They seem to be the lost souls of palliative care.
Going to school is a major effort yet there is so little support for them and their families who have to watch them slowly wane away.

I agree Etricia! There is so much work to be done. I was discussing the enormity of the problems we face with my niece and she wisely said..."focus on what YOU are doing rather than the enormity of the problems as if you do it in reverse you might be tempted to run away!"At least you are out there doing something Etricia and hopefully as Paediatric Palliative Care grows, hopefully more disciplines will come on board...BUT it is going to take one small step at a time.

Its very unfair for children who are not considered for palliative care with such serious conditions. Palliative Care is for all life limiting and threatening illnesses, it shouldn't just be HIV. Education is the only key. Funding is another option to open up more institutions that could provide facililties for such conditions.

Its very unfair for children who are not considered for palliative care with such serious conditions. Palliative Care is for all life limiting and threatening illnesses, it shouldn't just be HIV. Education is the only key. Funding is another option to open up more institutions that could provide facililties for such conditions.