Opinion

I’m passionate about organ transplants in Australia and I reckon you should be as well.

Australia has had a terrible history of underperformance when it comes to organ and tissue transplants when compared with most other developed countries.

It has simply been un-Australian. The bottom line is that lives have been lost unnecessarily.

Fortunately there are early signs we’re starting to turn that disgraceful underperformance around. But a lot more needs to be done. A lot more. And each and everyone of you has a role to play.

I’m the first to admit progress has been slower than we would have liked. I would have loved for there to have been a silver bullet but that’s just plain unrealistic.

Establishing and staffing a new National Authority from scratch, which will be sustainable, takes time. Getting each individual State health department to sign up and unify their different cultures takes time. Safeguarding taxpayer’s money also means you need to progress carefully.

There were 309 deceased donations in Australia in 2010. This is the highest result ever achieved in Australia. The 2010 total exceeds the totals for both 2008 (259) and 2009 (247). In percentage terms, the 2010 results exceed 2008 results by 19.3 per cent (2008 was the previous highest donation year in Australia) and 2009 results by 25.1 per cent.

It’s a good start but you hope it would be like that considering a new co-ordinated system has been put in place and a lot of money spent on it.

I always like to benchmark against the world leading countries. While we are a long way off their totals, we do stack up against their early results after they implemented their own national reforms.

. Australia's improvement in its first full year of reforms saw an increase 2.5 dpmp (donors per million people).

. the UK achieved an increase of 1.5 dpmp in its first full year of reforms;

. Spain, seen as the world leader in this sector, also achieved an increase of 2.5 dpmp.

The challenge is to now make sure we maintain a similar momentum to become the best in the world.

Just to give you a bit of history, I became interested in Organ Transplants when I was approached by a terrific community group of medical practitioners and business people called ShareLife. The group had trawled the globe to find world’s best practice in the area and mapped out a way how Australia could get there.

I was stunned at how bad we were. Australian lives were being lost needlessly because we didn’t have a co-ordinated unifying system.

To give you some idea, Spain, France and the US had double the transplant rate of Australia. If we can get to those levels the lives of 100 extra Australians a month would be saved.

It’s a mindboggling thought isn’t it. 100 Australian lives were lost because we weren’t up there with world’s best practise.

A lot is made of the waiting list for organ transplants which is at 1700 people. This is just the tip of the iceberg. Many doctors won’t even put their patients on the waiting list because they know they’ll die waiting.

Last year we made some headway in narrowing that gap and saved extra lives. But that’s not enough. There’s more to do and more lives to help.

Our donation rate is up to 13.8 dpmp but Spain is over 30 dpmp. Yes Spain took 10 years after the introduction of National Reforms to get to its current level, now it’s up to us to get there quicker.

What really struck me was we had the highest number of registered organ donors (per head of population) in the world but the lowest transplant rate. Something was happening in the middle.

I felt betrayed. I was a registered organ donor and I felt let down by a system that seemed to disrespect my goodwill.

It was heart wrenching to visit the Children’s Hospital in Melbourne during the annual Good Friday Appeal and see bubbly bright eyed kids waiting for a transplant only to be told they would probably die waiting.

I joined the ShareLife group and Sunrise became a strong campaigner for change.

There were 2 fundamental issues which became obvious;

. a hospital system with a disjointed focus on organ donation and an ineffective system of identifying registered organ donors and matching them with recipients.

. registered organ donors not discussing their decision with family. No matter whether you are a registered organ donor or not, your family has the final say on what is to done after your death. It’s important to let them know of your wishes to donate your organs.

In January 2008 I managed to catch Prime Minister Kevin Rudd for a beer and laid out the facts about our appalling history. He was stunned. As a recipient of a transplanted human heart valve, he owed his life to the generosity of someone else and their family.

The 2008 Federal Budget allocated $151 million over 4 years for the establishment of the Australian Organ and Tissue Authority.

The official start date was January 2009 and that first year was spent establishing offices, hiring staff, developing strategies and negotiating agreements with each of the States on how they had to change their systems in order to qualify for funding.

It involved establishing the new national clinical network of over 150 doctors and nurses located in 74 major hospitals around the country dedicated to improving organ and tissue donation and raising awareness about organ donation in hospitals.

I was invited to walk the talk and join the Advisory Council of the Authority and to also chair the audit committee. Unfortunately, that decision has alienated me from ShareLife. They took the view that unless ShareLife could control the Authority then they wouldn’t participate but instead would monitor and assess from the outside.

I’m still a great admirer of the people in ShareLife, and the work they do, but my philosophy is it’s better to work for change from within the system rather than from without.

For me 2009 was both frustrating and an eye opener.

I was used to being a small businessperson where if you want to make changes you just go ahead and do it.

Not so in the public sector.

I remember one of my first Advisory Committee meetings being told the biggest challenge we faced was ensuring the States didn’t pinch our funding and use it for something else. I was gobsmacked and suggested we name and shame the offenders publicly.

The health bureaucrats on the Committee were stunned, “you can’t do that, it’s just how the system operates and we need to work within it.” Bull dust and we’ve tried our hardest to make sure the funding is used properly.

On the positive side I’ve been really impressed with the financial practices of the public sector. They can be slow and tedious but the focus on fair and transparent tendering, recruitment systems, financial reporting and the role of the National Audit Office is impressive.

Like everyone else I’d always viewed public sector finance with disdain. I’ve been pleasantly surprised. It’s way more rigorous than the private sector.

Having said that Government is a big company and it’s not perfect. The Organ and Tissue Authority got in to trouble and was quite rightly chastised for cutting procedural corners in that first year.

Also the way an audit committee reports to the chief executive rather than an outside independent body still has me baffled and should be changed.

But like any new organisation mistakes have been made and the learning curve has been steep.

The States have had to be wooed, cajoled and whipped in to line with mixed success. That’s the downside of a Federation.

Results are the ultimate test. For us results are saving lives.

In the first full year of operation the results are acceptable without being brilliant. They never will be until we’re the best in the world.

All states other than South Australia, Western Australia and Northern Territory recorded their highest annual result in the past decade, with the 98 deceased donations in Victoria being the highest jurisdictional total ever recorded.

Victorians take a bow. But if you live in South Australia, Western Australia or Northern Territory you might like to ask your local member, or health minister or local hospital why aren’t they performing as well as other states in saving lives when they have similar funding.

I acknowledge the States do have a tough task because they have to reach down in to every hospital to change culture and systems. But that’s what the funding is for and the Authority is there to help.

Letting the States know we’re all watching their performance will hopefully entice them to lift their game.

We can all do our own individual bit to help as well. Sitting down with your family and explaining your wishes to become an organ donor will assist enormously when that decision has to be made.

There are some terrific fact sheets which burst the many myths surrounding organ transplants at www.donatelife.gov.au.