PMB claim refusals for special needs

Please note that my son's condition falls under pmb code 513A - Neuromyopathies not otherwise specified. Treatment under PMB list that you have on your site says (Initial diagnosis, initiation of medical management, therapy for acute complications and exacerbations) yet when we claimed in 2020 for the neurologist visit and test for the initial diagnosis although vague our claim was denied due to the condition not being specific enough. Along with that claim pmb form for his the****utic treatment (occupational, physio and speech the******) was denied and reason given was that the condition wasn't pmb... Later when we reached out to health touch we were told that the wrong code was used but they could give us the correct code.

So again everything was out of pocket. In the mean time due to our sacrifices my son's condition improved dramatically (because therapy is part of the treatment plan) so much so that in 2022 his physio said that he must get a standing frame as part of his treatment since his development slowed and wasn't progressing. So we app**** to pmb for the frame. We got denied, we then appealed and got denied again. When asking for the reason we were told a standing frame wasn't a treatment and to placate us we got offered to have an assessment for a buggy paid for (in no uncertain terms were we told that discovery doesn't agree to pay for the buggy, just the assessment)

The only thing discovery had covered was cost of ventilator, oxygen and consumables. Although in 2022 twice were we contacted by suppliers that oxygen wasn't paid and more fighting had to ensue. We have also had problems with the number of traches& mic keys medical aid is willing to pay for per year. Traches need to be replaced 2 at a time whenever sizes change. In 2021 my son's size changed 3 times that year but we are only offered two per year. Mic keys need yo be changed every 6 months with a spare on hand incase it bursts but we are only allowed by the medical aid. Now here is a quick explanation why a spare is needed for both. In the case of a trache, a clean spare needs to be on hand in case of a blockage, or in case the trache tears or breaks to allow the patient to be able to interchange them. A trache also needs to be changed once or twice a day. In the case of ventilated patients that needs to happen quickly so you need to have two or more.
In the case of mic keys or any feeding tubes for that matter. The time frame you have to replace a mic key that broke, rupture or fell out is 20mins, after that the hole closes up and the patient will need to get another surgery to have it reinserted... Perhaps when making decisions such as this you need to consult with a specialist since it would help save money.

As a mother of a full care special needs child (medical and physical needs) it is disgusting that we have to fight to our death to have anything paid for and we are met with so much resistance and no help that eventually we just give up and pay out of pocket.

This makes it difficult to give our children what they need when they need it.
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