David Pocock (ACT, Independent) Share this | Hansard source

There is a question many Canberrans ask, and that is: why in the national capital, a city of half a million people and a region of 1.2 million people, can't we look after young Canberrans and those in the region when they go through cancer treatment? This week we have seen yet another mother in Canberra begging both levels of government to work to establish a paediatric oncology and haematology service in the ACT. The travel, the chemotherapy and the stress takes a toll. As that mother said in the media earlier this week, no child should be vomiting in a public bathroom after chemo because there is no service closer to home.

This is obviously not an isolated case. I have heard from dozens of families that have had to split their time between Canberra and Sydney about the toll that that takes on their family and on the child getting treatment. I think we can do better. We can do better as a territory and we can do better as a Commonwealth government to ensure there is a service here in the ACT. Many Canberrans rightly ask: if our health system cannot look after sick children, is the system actually working?

On a related note, I recently met with a Canberran who tragically lost a child to glioblastoma. He was just five years old. I was so struck by the courage of his mother and her fortitude in the face of the loss of a child to come and raise this issue in the hope that other families wouldn't have to go through what they as a family have been through. Too many ACT families are forced to spend their child's final days outside Canberra. Most families can't come home from Sydney for end-of-life care because the ACT system doesn't have the support in place. This Canberra mum fought hard to get her son home, but it was a struggle. There are only two paediatric palliative care nurses in the whole of the ACT and no dedicated paediatric palliative care doctor. Everything has to go through Sydney. She told me they had to wait six days for a medication patch to help with vomiting. The patch arrived the day after her son died. I think that delay says everything about the system. Those 10 days at home mattered enormously to that family and to that young boy's siblings. I don't understand how we as a territory cannot do better when it comes to looking after children and families here in the ACT. I fear that we have some of our priorities very, very wrong.

There were some welcome changes in the budget for aged care, particularly the reversal of the decision to charge people up to 200 bucks, in some cases, for a shower. That should never have happened. I really welcome Minister Butler's intervention and announcement that that was going to be the case. One of the things we also saw, though, was that there were no new Support at Home packages in the budget. At last count, there were 230,000 people on the waiting list. Now we learn in the report that the government tabled during budget lock-up to try and avoid scrutiny that there are actually 48,000 people on the assessment waiting list to then get on the waiting list for a Support at Home package. So we're perhaps close to 300,000 people now. I would love for the government to just tell us how many people are currently waiting. What we do know from the government's report, which was meant to be tabled as soon as practicable after they received it—they received it on 28 April and waited until budget lock-up to get it out there—is that it's taking 12 months to get a package and to get services going.

Meanwhile, states and territories are reporting that there are 3,300 older people in our public hospitals needing aged-care services. They probably wouldn't be there if we had a supported home system that was working. So I urge the federal government. I understand that this is complex. It's a big change. But we've got to do better, because currently we're simply shifting the costs from the Commonwealth to older Australians, to carers, to families and to state and territory governments that have hospital systems that simply cannot keep up.