It's been an interesting couple of days to say the least. I have come to the conclusion that the services at the hospital leave a lot to be desired. The doctors (& nurses) are very overworked and staffing levels way to low. The government really needs to step up and find a way to entice more doctors to come to Canberra.
I have found that there are very few paediatricians in Canberra (private and through the hospital). The waiting list to see a private paediatrician is up to 12 months. Its not much better through the hospital system. Christie cannot see her usual paediatrician until October! She hasnt seen him since Feb. Ridiculous. I have been advised to take her to Sydney to find a paediatrician, pain management clinic (the one here doesnt see children - this is the hospital). I have located a private pain management clinic but again the wait is until October and is very expensive. So, as there is no paediatric uroligist in Canberra i take her to see one in Sydney. The opthamologist she has to wait until september. Genetics clinic in Canberra - October. As the genetics people are the ones who travel down from sydney i am just going to take her to Westmead as i have more faith in them than any doctor here in canberra! Christie HATES the hospital and doesnt trust the nurses or doctors from her past experience. This is Australias capital City - the major public hospital, but there are practically NO services for children.
So yesterday we had an emergency appointment with an accute care paediatrician because i pretty much threw a hissy fit because they had cancelled her July appointment for no reason. I made a written complaint to the department of Health. Amazing what can happen when you make yourself known to 'the powers that be'. This particular Paediatrician (i am just going to refer to them as P cuz its too long to type it), so anyway this P told us that he didnt want to see her again as he couldnt really help her as he couldnt see her regularly. Great. The visit was pretty much a waste of everyones time.
I have been able to get Christie into the Psycology Clinic at the ANU. Its not ideal, but for now it will do. The clinic is run by the ANU and the psychologists are students who are in their last year or 2 of their degrees or whatever. They are supervised by fully qualified Psychologists. The lady who supervises Christies team is a Doctor who worked in Perths Childrens Hospital with Children who have conditions/diseases etc and suffer chronic pain. So she knows what shes doing in regards to helping Christie deal with her issues, which is fantastic. Today was our first appointment and both Christie and i are pretty happy to continue seeing them. They even see me! poor bugger lol his head will be spinning by time he is done. Todays visit was pretty much a 'get to know you, whats the issues etc' session which went for 1 1/2 hours. Pretty exhausting.
Finally, i feel we are making steps in the right direction. Now just have to finalise her Distance Ed, find a paediatrician and organise appointments at the Connective Tissue Displaysia Clinic at westmead for her to see the pain management team, physio, psychologist (its a multi-disiplinary team) and then our appointment with the Genetics Team there. Gosh i am exhausted thinking about it!
On our next trip to sydney in a couple of weeks i have decided that amoungst all of this pain and medical 'stuff' she is going through its time she had some FUN so we are thinking about going to Luna Park or at least something out of the ordinary for her.
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