"I start to forget which specialist does what. We have the cardiologist, the neurologist, the nephrologist for his kidneys, a gastroenterologist for his liver," Amelia Fangmeier pauses. "Oh and now we have an allergist - we just found out he is allergic to one of his medications."
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Amelia Fangmeier is the mother of a very sick little boy. Her son, Jagger has autosomal recessive polycystic kidney disease with congenital hepatic fibrosis of the liver. The rare genetic disease Jagger suffers from is aggressive. Most children do not survive past three weeks, but Jagger turns five next month.
"Jagger's liver is shutting down. There are signs he is progressing to liver failure and he needs iron infusions so we are always in and out of the hospital and when things get especially tough and he gets really sick we have to visit the doctor almost weekly," she says.
Without a kidney and liver transplant Jagger's disease will eventually kill him.
Jagger is one of 1500 Australians waiting for the organ they need to save their lives. But despite millions of dollars being poured into improving transplant rates, improvements have been small, and the community of people involved in organ donations has been fractured by highly charged and bitter debates.
Last year 40 per cent of affected families refused to give consent to allow their relatives' organs to be donated, contributing to a three per cent drop in the number of donors from the previous year.
And worse, many doctors are not using the best evidence-based methods for asking families for their loved ones to become donors that have been shown to drastically increase the likelihood those families will utter that most important word: yes.
Former prime minister Kevin Rudd, himself the recipient of a life-saving heart valve, in 2008 set the goal of Australia becoming a "world leader" in organ donation by 2012. However, even though there has been a relative increase in the number of people who have received transplants from living and deceased donors – 56.3 transplants per million in 2008 to 59 transplants in 2014 – this 4.6 per cent increase has cost more than $250 million, according to Australia's largest not-for-profit organ donation lobby group, ShareLife.
"This means that an investment of a quarter of a billion dollars has resulted in a very small increase in the number of actual transplants. Both the donation rate and the transplantation rate have been going backwards for two years," said Brian Myerson, the Director of ShareLife.
He argues that despite an unprecedented investment in reform over the past six years Australia's organ donation rate still remains shamefully low.
"Over 1000 Australians miss out on lifesaving transplants every year because of mismanagement and a failure of leadership at the national level."
"Australians, particularly those waiting for transplants, need to know that Australia's low donation rate is not a result of people failing to discuss organ donation with their families. It is the system that is failing them."
However, chief executive of the Organ and Tissue Authority Yael Cass says international experience shows that improving the donation rate is difficult and slow work.
"Spain and Croatia lead the world in organ donation but if you look at what they have achieved you will realise it took both those nations 10 years to reach sustained growth in their donation rate. The same applies for Australia," she said.
"A reform agenda of this magnitude takes time to achieve its full potential and we have seen significant growth in the number of donors and number of transplants over the past six years."
Although there were fewer individual donors in 2014, the number of organs transplanted increased to a record 1193, representing a 39 per cent increase in the number of organs transplanted in Australia since 2009.
2014's three per cent decline was not uniform, she points out.
"There was only a drop in three states. In the other five states and territories the donation rate remained steady, or actually rose."
Improving the quality of the organ donation conversation between a doctor and a patient's family has taken centre court in the government's latest push to boost the donation rate.
The Organ and Tissue Authority have been pushing specialist, intensive care hospital staff to undergo training in the collaborative requesting mode, which involves a intensive care doctor and a DonateLife trained requester working together.
A recent 15-hospital trial in Australia showed it has a 70 per cent success rate when used by health professionals. However, in 2014 only one in four hospital staff used the collaborative requesting model and only 47 per cent of families allowed their relatives' organs to be donated.
"We are seeking to implement it over the next two years and for fellows of the college of intensive care medicine the training is now mandatory," Cass said.
The authority is anticipating a rise in donation rates over the next two years as the model is rolled out across the country.
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However, Cass points out that while 2014 may have seen a drop, over the past five years of reform, Australia's increase in donors per million population (an increase of 41 per cent) compares well with growth achieved in the UK (41 per cent) and Spain (52 per cent) in their respective first five years of reform.
Jon and Michelle Seccull are all too familiar with the agonising conversation donor families face when unexpectedly confronted with the tragic death of a loved one.
"It was in late 2011 and we were living in a little property that had a train line nearby," said Mr Seccull. "My son Ethan loved watching the trains going past, and he decided to climb the back fence."
Ethan was clipped by the train as he tried to wave to it. He was airlifted to hospital in a critical condition.
"The surgeons worked gallantly. After two hours they delivered the news that Ethan would not recover from his brain injury. My wife and I looked at each other and said, 'there is nothing we wouldn't do to help save Ethan, to give him a chance to live.'"
Ethan was three years old when his parents made the heartbreaking decision to turn his life support off.
"We thought if that was Ethan laying there dying because his kidneys had failed, we would have accepted someone else's kidney to save him straight away. It would be selfish to think you would take an organ, but not be prepared to give it."
"We couldn't get our miracle, but through Ethan we could give others theirs."
Ethan was able to donate two heart valves and both his kidneys, saving the lives of two other desperately ill children and an adult male.
"People just won't have the conversation because it is too 'awkward' and it's like we all have some crazy attachment to our organs," Jagger's mother Amelia said.
"If you went out onto the street and asked people whether they'd be the recipient of an organ I can guarantee 99 per cent of people would say yes. So if you're willing to receive an organ, should you not also be willing to become an organ donor?"
