20/02/14 - something has to change

After yesterday's debacle with ENT, I got pretty fired up. The current system of care for our cleft kids in Tasmania just isn't good enough. Problems are being missed and intervention isn't happening when it needs to, and something needs to change.

I started doing some research in to the systems in place in other states, and Tasmania is years and years behind. Other states have clinic based care, where you can walk in and see all the different specialists you need to see at the same place. Other states have a coordinator who manages the different appointments, so that us as parents don't have to try and remember who we need to call while we are worried and stressed. 

I spent a lot of time reading medical journals, and I found out that roughly 16% of kids who have coordinated care report problems that aren't being addressed. The figure rises to 75% for those with a care system like ours. That's just not acceptable.

So, rather than sit here and complain to myself, m going to do something about it. I'm putting together a full report, with my research and real experiences, and I'm going to beg the tasmanian government to make the changes that need to happen. My daughter, and the hundreds of other cleft kids in Tasmania, deserve better.