"Non-diagnosis"

We have visited Princess Margaret Hospital (PMH) for over 3 years in an attempt to get medical assistance for my child. We think my child may have a rare issue that requires specialist advice but we are continually dismissed - 'lost' in the system and my child is denied access. My child is too sick to function normally and too well for the hospital to offer assistance.

We have presented in emergency several times and have been admitted once for a longer stay and had out patient care.

We are still struggling to be taken seriously. I have lodged a complaint, but after doing my own research the likelihood of a parent continually presenting to a hospital over several visits for the same complaint and it being taken seriously is almost zero.

If I research and use medical terminology in an attempt to understand my child's issue, as nobody else is, I am flagged.

If I get emotional, I am flagged.

If I don't do anything, my child gets chronically ill.

I need a referral to a specialist in genetics or metabolism and I cannot get one without evidence. I cannot get evidence without seeing the PMH specialists. There are no private specialists that can assist us in WA. This will be the second time we will are being forced to use medical services in other states just to be able to get help for my child.

It's taken so long, as the research and information we are using is from Google. We are having to do it ourselves. I am not a doctor or a nurse and it should not be this way.