Nicola has spent the largest part of her life as an inpatient at the hospital. It has been something that my family has struggled with from the onset.
We moved to Brisbane while I was pregnant with the intention of my husband going back to his former employer, which was a good, family friendly work place... a must given that we were about to have our third child in under as many years.
He lost his job in February this year after having too much time off work to care for our older children while I've been in the hospital with Nicola's repeated admissions...
But trying to make the medical staff understand the impact that this has on our lives has been nigh on impossible, to the point that we've just given up and put all our energy into the fight for her health care, a battle that was constantly being waged anyway.
After we were given her diagnosis, at our first paediatric consultation several weeks later, we had an extended meeting with the new paediatric consultant, as our original consultant was on maternity leave.
This was shortly after I wrote an extremely lengthy email to several high up persons to express my concern and unhappiness at the quality of the care she has received.
When we started this consultation, my husband and I sat down and took our time to explain our concerns... how we felt that our last paediatrician didn't listen to us and that our concerns were never considered, and that Nicola's care had been so far substandard that we didn't consider it to rate on the scale at all... and also the fact that they had REALLY dropped the ball with her diagnosis... that we were so angry and hurt by the way we had been informed of her condition and the fact that we were left on our own with no information, no support and nothing...
Of course, then and there, she said all the right things and made all the right gestures and promises...
Two weeks later she refused to sign the paperwork for us to travel. She told us that the risk of 'contracting seasonal respiratory viruses' was too high so she would not sign our medical clearance.
We dealt with that, we sorted that out... then today we've got a copy of Nicola's medical file to take to the conference with us.
Right in the front is a letter that this 'woman' has written and cc'd to every other department involved in Nicola's care as well as the local GP that *I* see and in it, amongst other anger intensifying comments, she states that we are 'hostile' and that our anger at the botched care our daughter has received is simply a 'severe grief reaction misdirected at medical and nursing staff'.
How the hell can she say that our anger over their screw up's is misdirected grief?
We've been angry since before the diagnosis, this is just the first time we've actually been able to get someone to listen to our concerns!
I've sent an email tonight to the director of the hospital asking to have a new paediatric consultant assigned to Nicola's care. I need a doctor that I can trust dealing with my daughter, not a self righteous megalomaniac with a holier than thou superiority complex!
But still... soooooo angry I could cry!