This is the third time in two months that I have risen to speak about Palliative Care Tasmania and the dire future facing them. Even though my petition was tabled in the parliament last sitting week, I continue to receive signatures on the electronic petition despite no longer asking for them. Over a thousand Tasmanians are now calling on the Turnbull government to extend Palliative Care Tasmania’s funding.
Since the last time I spoke on this issue I have received a response from the Minister for Health and Aged Care, Minister Ley, to my letter of 5 August. The minister’s letter points out that the entire Better Access to Palliative Care Program, through which Palliative Care Tasmania delivered one component, was funded through the Tasmanian Health Assistance Package. The minister says that the Tasmanian Health Assistance Package is not an ongoing program, although some initiatives have been extended past 30 June 2016 to allow for expenditure of unspent funds within existing allocations. For example, Palliative Care Tasmania had their funding extended to 30 September 2016.
I am pleased that the minister was able to get these facts right, because she failed dismally when her office was quoted in response to an article in Hobart’s Mercury newspaper on 20 September. A spokesperson for the minister said that Palliative Care Tasmania received $63.2 million funding over four years from 2012—that is wrong. As a matter of fact, this was the funding provided by the previous Labor government to the entire Better Access to Palliative Care Program, of which Palliative Care Tasmania received $2.67 million. The spokesperson went on to say that their funding agreement was extended to September this year in order to give them more time to achieve their outputs. I hate to tell you this, but that is wrong again. As a matter of fact, Palliative Care Tasmania had well exceeded their targets.
The minister’s letter is disappointing for a few reasons. Firstly, it says that there are no opportunities to receive additional funding under the Tasmanian Health Assistance Package. That much is clear. I understand that the Tasmanian Health Assistance Package was a one-off program. But surely that could not stop the Turnbull government from looking at the program delivered by Palliative Care Tasmania’s community education program on its own merits? After all, this is what Labor committed to before the last election. We committed to spending $2.3 million to fund the program for a further three years and to evaluate it for a national rollout.
We made that commitment recognising the incredible contribution this community education program has had to improved outcomes for palliative care patients, their families and their carers. Together with other aspects of the Better Access to Palliative Care program, this program has resulted 26 per cent of Tasmanians being able to die at home in accordance with their wishes, compared with the national average of 14 per cent. This is well short of the 70 per cent who wish to die at home, but certainly is a significant improvement.
I mentioned earlier that Palliative Care Tasmania had well exceeded their targets. They had a contract to educate 1,000 Tasmanians, yet they managed to educate more than 13,000. This is a more than a 1,200 per cent improvement on their target, while still underspending their allocated funds enough to extend the program another three months. During that three month extension, Palliative Care Tasmania will have delivered another 35 education sessions—and they have a waiting list.
So while Minister Ley is telling me, in her response to my letter, that there are no opportunities for Palliative Care Tasmania to receive further funding, she has said nothing to acknowledge the excellent outcomes this program has achieved, nothing to acknowledge the vastly improved end-of-life experience that hundreds of Tasmanians have had as a result of this program and nothing to acknowledge the potential savings to the Tasmanian acute healthcare system from having more palliative care services delivered in the home rather than in hospital.
To give you an idea of why this organisation is so greatly valued, just the other day, I attended a fundraising event at a local residential care facility called Oakdale Lodge. While I was there, I was talking to the CEO of the organisation that runs Oakdale Lodge, and we got onto the subject of palliative care. Through this conversation, I found out that Liviende Veranto, the organisation, had received funding from Palliative Care Tasmania for a research project to look into the palliative care needs of people with disability and life limiting illnesses. Liviende Veranto conducted a series of consultations with people with disability, their families and disability service providers. Until this project was undertaken, very little was known about the palliative care needs of people with disability in Tasmania.
What they found, through their research, was that there was a need for more conversations with people with disability about death, dying and grief, and about their end of life care needs. There was a need for more training of disability care sector workers about how to have those conversations. At the same time as expressing a need to be heard about end of life care, the project participants also expressed how empowering it was to be listened to when it came to their wishes. This one project has had a profound impact on the way we approach palliative care for people with disability in Tasmania, and this is just one of more than 70 projects that have received grants from Palliative Care Tasmania.
I mentioned there are a few things that are disappointing about the minister’s response to my letter. One is the failure by the minister to acknowledge the amazing outcomes Palliative Care Tasmania has been able to achieve. Another is the minister’s assertion that there are no further opportunities for funding under the Tasmanian Health Assistance Package, and the Turnbull government’s refusal to look at this program on its merits. I am also very disappointed that the minister points to the National Palliative Care Strategy as if it will fill the gap left by the closure of Palliative Care Tasmania’s community education program. It will not.
But the fourth and final thing I find disappointing is that there is a huge, gaping contradiction in the minister’s response. The minister mentions that the Better Access to Palliative Care Project is being evaluated for its ‘appropriateness, effectiveness, efficiency and impact’ and that this evaluation is expected to be completed in December. If the door is open to extending funding to some aspects of the BAPC program, then why not Palliative Care Tasmania? After all, the BAPC program is an integrated package, of which Palliative Care Tasmania’s services are a key component. Surely the minister’s statement that there are no opportunities for further funding also apply to the remainder of the BAPC program? And, if this is the case, why bother with an evaluation at all? And what if the evaluation confirms my belief that the BAPC program, including Palliative Care Tasmania’s community education program, is delivering in spades? Is the government simply going to ignore it?
I am going to quote from an editorial that was published in Hobart’s Mercury, which said of the pending closure of Palliative Care Tasmania:
In a world where talking about death and dying remains somewhat taboo, the education, information and advocacy services provided by Palliative Care Tasmania are critical. The vacuum created by its demise will undoubtedly suck in other care providers that are already stretched for resources.
Palliative Care Tasmania, thankfully, has been able to survive beyond the end of September, and might—just might—be able to stretch their funding until the end of the year. But in order to do so they have had to close their main office, cut the hours of all their staff and sell a vehicle.
The minister’s and the government’s response to this issue just goes to show that they do not understand or appreciate how much Palliative Care Tasmania’s community education program is valued by Tasmanians. So I challenge the minister to come down to Tasmania and talk to the staff at Palliative Care Tasmania, and to talk to all the organisations that have benefited from their services. Minister, look the staff of Palliative Care Tasmania in the eye and tell them that their organisation—their jobs—are not worth saving, or that they do not carry out a most important service. Talk to stakeholders like Council on the Ageing, Aged and Community Services Tasmania or Liviende Veranto. Explain to the 1,000 Tasmanians who have signed my petition, or the 13,000 Tasmanians that this program has helped educate, why you have failed to understand what this service means to them. Explain it to the hundreds of people whose terminally ill friends and family members have had a better end-of-life experience because of Palliative Care Tasmania. Have the guts to tell those people that the services provided by Palliative Care Tasmania do not merit further funding.
The minister’s failure to acknowledge the excellent work that Palliative Care Tasmania is doing—and her refusal to even consider an extension of funding based on the merits of this program—shows a lack of understanding about what this organisation has delivered, and a callous disregard for the palliative care needs of the people of Tasmania. I will continue to fight for this program because, unlike Minister Ley, I understand the importance of the outcomes it is delivering for end-of-life care in Tasmania.