Motions

Health Consumers Alliance

Mr PICTON (Kaurna) (11:28): I move:

That this house—

(a) notes the vital importance of retaining an independent advocate for consumers in our healthcare system;

(b) congratulates the work of the Health Consumers Alliance over the past 16 years in representing and empowering consumers and patients in our health system;

(c) condemns the government for cutting all funding to the Health Consumers Alliance in the 2018 budget;

(d) notes that this cut will leave South Australia as the only state without an independent health consumer advocate funded by the state government; and

(e) urges the state government to immediately reverse this cruel cut and support a voice for health consumers in our state.

It is vitally important that there is a voice for patients, for consumers, for people who use the health system in South Australia. Every time the health system is discussed, obviously you hear word from the government, you hear word from the opposition, you hear word from a range of different stakeholder groups, such as doctors, nurses and other employees, but the key people we absolutely should be listening to more are the patients who use the healthcare system: the people who turn up at emergency departments, the people who need our healthcare system, the people who rely on mental health services as consumers.

We want these people to have an improved voice in our healthcare system. We must have a patient-orientated healthcare system, one which ultimately works for patients because that is what the healthcare system is completely designed to do. Obviously the number of consumers of healthcare services is so massive that it is difficult to have a union in the same way that you would for workers who are represented through such a forum.

That is why the previous government, some 16, almost 17 years ago now, helped to create the Health Consumers Alliance of South Australia to be an independent body to represent patients and consumers in South Australia, to help train up patients and consumers to help represent themselves and others and to be involved in the plethora of fora, engagements, consultations, round tables and panels that Health has as part of its engagement process.

In addition, the Health Consumers Alliance was created to make sure that at each of those meetings there is a voice for patients and consumers in those processes and to make sure that the people who are going to those bodies, panels and consultations are people who not only have experience on the front line in the healthcare system but also have had the training and backup to enable them to understand what can be a quite complex bureaucracy that they are navigating in terms of advocating their position at that whole of state or local level.

That is why it was set up as a body, that is why it was set up independently from government and that is why it was set up with a stream of government funding in the same way that so many other peak bodies are funded by the government—to enable that peak body to represent consumers. There is no other way that the Health Consumers Alliance is going to be able to facilitate enough funding. You can hardly go rattling the tin around emergency departments to do that. It is a role for government, and we know that is the case because progressively every other state has done the same thing.

There is a similar national body as well: the Consumers Health Forum of Australia. Every other state has a government-funded, independent, consumers advocacy body that is funded as a peak body by the government to represent consumers and patients in their healthcare system, which is ultimately recognised as one of the most complex things that government does and obviously the highest spending of any portfolio in the government.

That is why I was very disappointed, in fact, angered—as were so many people on this side and so many people in the community—that one of the cruel cuts nine or 10 months ago in the 2018 state budget was that the government decided without any consultation and without any discussion to cross a line through all funding given to the Health Consumers Alliance, saying that no central funding will be given to this organisation anymore.

I think that is a disgusting move. I think that was clearly done by some Treasury official who thought, 'Why do we need this body?' not somebody who understands the importance that this body has had in involving consumers and patients in our healthcare system, trying to get improvements, and trying to make sure that their voice is always listened to. We know that Health has been pleased with the performance of the Health Consumers Alliance because the health department has said that to them many times.

The health department has made sure that they have been involved in a whole range of different discussions and panels, and all the feedback they were getting was very positive about the contribution they were making. In fact, the health minister in the other place, the Hon Stephen Wade, very much praised the Health Consumers Alliance and said what a great job it was doing. The government has gone from a position of saying that this is important, saying that they are doing a good job, to now cutting the entirety of their funding—not cutting 20 per cent, not cutting 50 per cent, but cutting 100 per cent of their funding.

This leaves this organisation in a perilous state. Very sadly, they have had to let go of the vast majority of their staff. They have had to let go of their office lease where they were able to hold meetings with consumers, hold training for consumers and patients and hold confidential discussions with people about their experiences. They do not have that office floor lease anymore and they do not have nearly as many staff as they did before. They are running now on the smell of an oily rag and basically facing the sad prospect of whether they will be able to survive.

The government's line is: 'We don't need this body anymore. We don't need any central funding because we're going to have boards at the local level of LHNs. That will take care of all this. Having boards will take care of this voice.' That is absolutely absurd. It is complete rubbish. We know that those boards will comprise a whole range of people who are not necessarily health consumers at all. They are people who might have experience in corporate governance or business, but they are not health consumers. They are not trained to represent health consumers. They are on that board to run the business, not to represent consumers or to stand up and provide independent advocacy for them.

The government also says, 'Those boards will set up their own little panels of consumers. We will make sure that they talk to consumers about things.' The difference here is that the Health Consumers Alliance is an independent body. It is an independent body that is not afraid to stand up to government, not afraid to say things that might be unpleasant to government, yet what the government is proposing is that it would all just be internal to government. They would never hear any opposition or criticism from the consumers and patients within these forums because it would all be within the government.

The other big problem with what they are suggesting is that we know that so much of the health system has policies, procedures and budgets set at the statewide level. Even under what the government is proposing, an enormous amount of work is happening at the moment at the statewide level, looking at the future of our mental healthcare services; at the statewide level, looking at how our governance system is structured at the moment; at the statewide level, looking at how out-of-hospital services are being provided; at the statewide level, looking at things like drug and alcohol services. These are all being done at the statewide level.

Not to have a body involved at the statewide level representing patients and consumers is depriving them of a voice. We know that the health department still thinks that it is important because they are still asking the Health Consumers Alliance to go to a whole range of consultation forums at that central level, but we are faced with the very real prospect that this organisation might not be around for very much longer in the future if these budget cuts remain. The truth of the matter is that they just cannot operate to the extent that we need them to in South Australia without any funding from the state government.

The state government fund a whole range of different peak bodies in health, education and social services. This is one. Why were they singled out? I do not know, but it looks to me like a pattern. The government have already tried to remove the Health Consumers Alliance by cutting all their funding. They are actively considering abolishing the Mental Health Commission, another independent organisation that provides a voice for people, and in fact have endorsed an interim report recommending it. They are trying to get a bill through parliament to get rid of the Health Performance Council as well. That clause has so far been rejected by the Legislative Council, thank goodness. Hopefully, that still remains the case.

So here we have three bodies providing independent voices for our healthcare system and the government is actively seeking to remove those voices, that independence, and bring everything inside the tent in which there cannot be criticism of the government. Of course, this is the complete opposite of what the Liberals said when they were in opposition. When they were in opposition, they said that we needed more independent oversight, that we needed more independent voices about the healthcare system. Now they are in government, we see that being taken away.

The Health Consumers Alliance is just one example of that. I have met a number of people who are involved in the Health Consumers Alliance. These people have been trained by the Health Consumers Alliance and therefore gone on to train other people, bringing in other people as advocates for our healthcare system. They have been able to pursue the things that they see as important, which are not always going to be the same as those that bureaucrats or staff in the healthcare system think are important.

It is about what matters for the patient. That is ultimately what this body is there for. That is why we will keep fighting for this body. That is why I think that this motion today is essential, that this house stands up and says that this cut is not good enough, that this cut should be reversed. Sadly, in the budget we had yesterday it was not reversed. Sadly, we did not see this cut or a whole range of other cuts to the healthcare system reversed yesterday, and they will be continuing for the near future.

I hope that the government have a change of heart on this. To try to do that, we have introduced an amendment to a bill, which will probably be coming down to this house today, to seek that, as part of the Health Care Act, it should be a provision that the government should be supporting an organisation that represents consumers at the statewide level. That is something that is now supported by the Legislative Council. I hope that this house and the government support it as well because it is absolutely essential that there is a role for that central body.

If it is not them, then who is going to do it? If it is not them, then who is going to train people, find consumer advocates and help them to speak independently on behalf of patients and consumers in the healthcare system to try to improve things? If it is not that independent organisation, then nobody is going to do it. We will be much poorer for that. There will be fewer independent voices and there will be less focus on patients in the healthcare system, which is ultimately what South Australians want to make sure does not happen in the future.

I endorse the motion today. I hope that it is something the government will support. I hope that we can get the $500,000 a year cut by the government reversed and make sure that we are not left as the only state without such a body that represents patients and consumers in the healthcare system and that we try to bring about meaningful change where we can improve things for them.

The Hon. D.C. VAN HOLST PELLEKAAN (Stuart—Minister for Energy and Mining) (11:41): I move to amend the motion, as follows:

Delete all words after 'That this house' and insert the following in lieu thereof:

(a) welcomes the devolution of health governance to boards with the focus of consumer and community engagement on the local health networks' governing boards;

(b) notes that each network's governing board will have a statutory responsibility to establish a strong relationship with its local community through the development and implementation of a community engagement strategy; and

(c) acknowledges the work of the Health Consumer Alliance over the past 16 years and the opportunities it now has to become an even stronger and more independent consumer voice under the new governance arrangements.

I agree with much of what the shadow minister has just said and much of it I disagree with. It is probably fair to say that one of the most fundamental differences between the government and the opposition is the opposition's desire to centralise most things and the government's desire to work as closely as possible with people on the ground.

There is nothing about the work of the Marshall Liberal government or of the Minister for Health and Wellbeing, the Hon. Stephen Wade from the other place, that is about trying to silence a voice or in any way impede the valuable information that the consumers' health services have across the state from being heard; we just believe that we should do it in a different way. SA Health values the important contribution consumers, carers, families and the community make in improving health services.

The Marshall Liberal government is reforming the governance of SA Health. With the establishment of the local health network governing boards in July 2019, the focus and governance of consumer and community engagement will shift to the local health networks. They will establish strong relationships with local consumers and the community through the development of a local community engagement strategy. The Department for Health and Wellbeing is working collaboratively with and funding the Health Consumers Alliance of SA to develop the statewide consumer and community engagement strategic framework.

The strategic framework will ensure that consumers and the community are engaged in service planning, designing care, service measuring and evaluation. The reforms will support local decision-making, meaning that decisions about health services will be better tailored to local needs and will deliver a safe, high-quality and financially sustainable health system into the future. Each local health network will be required by the government's legislation to develop a consumer engagement strategy.

The Health Consumers Alliance are encouraged to engage with chairs of the local health network board, as the boards work to engage consumers. The government believes that the Health Consumers Alliance are well placed to play a role in this service and can become a stronger voice by more effectively engaging with a range of networks.

The government wishes to thank the Health Consumers Alliance for their commitment over the years. It is envisaged that the Health Consumers Alliance will continue to play an integral role in consumer and community engagement and advocacy in South Australia. The government believes that as they devolve management of health services to the regions it also makes sense to devolve consumer engagement to the regions far more directly.

I have no doubt that the shadow minister, just as I do, just as the Minister for Health and Wellbeing does and just as, I am sure, every member of our parliament does, wants consumers to have a strong voice with regard to engaging with the health system so that the health system can deliver the very best outcomes possible for those who are, of course, at the centre of the health system, which is those people who receive support.

We do have different opinions between the government and opposition about the best way to go about that, and we are going down the path that I have just described. It is no surprise to the opposition that we are going down this path; it was known that we planned to establish these health governance boards, these local health networks, since well before the March 2018 election. It was an election commitment that we made very clearly at the time, it is an election commitment that we are delivering on and it is an election commitment that we are delivering on because we want South Australians to receive the very best health care that they possibly can.

We understand that that, of course, includes their having a strong, capable voice to the health system with regard to what their needs are, but we do differ from the opposition in that they believe that it must be a centralised voice overwhelmingly, whereas we believe that, the closer we can get to those consumers, the closer we can engage directly with the public who consume health services—through the governance boards we are establishing in regional areas and metropolitan Adelaide specifically so that they have a more direct pathway into decision-making—and that that is a far better way to go about it.

Mr BOYER (Wright) (11:48): I rise to support the motion from the member for Kaurna. I think I can speak on behalf of probably many members of this place in saying that one of the most common requests we as members of parliament get is to assist constituents to navigate the health system. It is a behemoth, and I think all health systems around the country and around the world are like that. It is a challenge for anybody to navigate it, especially if you are ill, which is of course often the case, or elderly or, in many cases, both those things. That is why having an advocate like the Health Consumers Alliance is so important—an independent voice to distil the feedback of people who are actually using the system into policy in order to make those processes easier and better for people who are using the system into the future.

Recently, I have been called on to assist two constituents in the seat of Wright with serious issues that they have encountered in our health system, issues that I know could provide valuable insight for the Health Consumers Alliance and provide beneficial change to policy and practice. The first was the case of Mr Claus Burg—and I asked questions of the minister representing the Minister for Health in this place yesterday about that tragic case.

Mr Burg is a 70-year-old man who lives in Brahma Lodge with his devoted, Lynda. About 11 years ago, in 2008, Mr Burg was sadly diagnosed with bladder cancer. He commenced treatment at The QEH and that treatment was largely successful in containing the cancer and preventing it from spreading anywhere further in his body. Following that successful treatment, under recommendation from his doctor, Mr Burg was to continue to obtain a CAT scan every six months to monitor and detect any changes in his condition.

Last year, Mr Burg went to see a new oncologist after his previous specialist moved on from The QEH. Mr Burg was called in to discuss the results of a CT scan and was told the good news that it was all clear. Claus and Lynda were obviously ecstatic about this news and it was a huge relief for both of them. But a few months later, after he experienced some very rapid weight loss, he did the right thing and went back for a check-up, in this case to his local hospital, the Lyell McEwin Hospital.

More tests were conducted and the previous CT scans from The QEH were sought by doctors for checking. It was then that Claus was told the tragic news that his final CT scan from The QEH had been misread by that oncologist and that very visible spots on his lung and stomach, clear signs that the cancer had spread, were missed. Claus and Lynda were told that the cancer was now stage 4, terminal and inoperable. I cannot imagine being told that you are terminally ill, but being told that it was avoidable and due to a very simple error on behalf of your oncologist is gut-wrenching.

The decision Claus and Lynda were faced with at that time was whether to spend the time that Claus had left putting it behind them and enjoying the remainder of the time they had together or standing up and seeking answers about what happened and doing everything in their power to make sure that it never happens to anyone else again. Claus and Lynda courageously chose the latter option. I have helped them in that endeavour as best I can, but it has not been easy. Not even with the assistance of their member of parliament has this been an easy process, by any stretch of the imagination.

Claus first wrote to the Minister for Health seeking an investigation into what occurred around about the first week of April. I followed up that correspondence with a letter of my own to the minister on 5 April and, after no response to that or to Claus, I wrote again on 25 April. My diligent office manager called the office for the Minister for Health on 24 and 29 April and then on 8, 14, 21, 23 and 27 May to ask when a response would be forthcoming. On every occasion, we were told that the correspondence was with the department for a response.

In early June, we literally gave up hope of ever getting a response from the minister and Claus spoke to Channel 7 journalist Mark Mooney about the tragic circumstances of his case. Miraculously, the next day a letter was couriered out to Brahma Lodge from the Department for Health, but still to this day, months afterwards, there has been nothing from the Minister for Health—nothing to Claus and nothing to me—despite the minister attending a health forum in Salisbury just last week and practically driving right past their house. This is from a government that tells us that there is no need for an independent health consumers alliance.

The other case I would like to briefly mention is that of Mrs Beverly Sawlwin, a 78-year-old resident of Modbury Heights. Mrs Sawlwin received treatment for cataracts at both the old and the new Royal Adelaide hospitals over a long period of time. The treatment on her left eye had been successful, but over time her right eye deteriorated, too. It got so bad that Bev requested to be referred from the RAH to Modbury Hospital because she could no longer safely make her way into town to those appointments.

This referral was accepted, but Bev was told that it would be more than a year before she would receive an appointment, so she approached the hospital to inquire just how long the wait could be. She was told eight to nine years. In other words, 78-year-old Bev would be at least 87 years old before she received an ophthalmology appointment. Again, due to no response from the Minister for Health, an elderly consumer—a patient in the health system, to use that language—was forced to turn to their member of parliament and the media to get help.

Unfortunately, weeks after that story aired on Channel 9, Bev still does not have an appointment at Modbury Hospital and she still has not received a reply and nor have I. Following the story on Channel 9, she was called by some people from the health department and offered an appointment at the Royal Adelaide Hospital but had to remind them that she was seeking the appointment locally because she could no longer attend the Royal Adelaide Hospital due to her eyesight. You can imagine Bev's frustration.

These are just two examples, and we all know that there are many, many more. These cases need to be heard and they need to be considered. They need to be acknowledged at the highest level of decision-making to make sure the mistakes that we have seen in these cases—cases such as those of Claus and Bev—are not repeated.

This is why the previous Labor government, as the member for Kaurna mentioned in his contribution, many years ago funded the Health Consumers Alliance—to make sure consumers and patients have a voice in that decision-making. But this Marshall government has cut that funding, leaving South Australia as the only state without an independent health consumers advocate funded by the government.

I know I speak on behalf of not just Claus and Bev but many other patients and consumers who feel helpless when trying to navigate the health system when I say that I wholeheartedly support this motion from the member for Kaurna and call on the government to immediately reverse this cruel cut.

Mr PICTON (Kaurna) (11:55): I thank the member for Wright for his words. In some ways, I thank the Minister for Energy for his words. Certainly, the opposition and I will not be supporting the amendment moved by the government, which is pretty disappointing. It is just as disappointing as the government's entire approach to this issue. The government's amendment says, 'We acknowledge what great work the Health Consumers Alliance have done,' but has the gall to say, 'It will be even stronger now that we have cut all your funding.' It is like saying, 'We will let poverty set you free.'

There is no way that the Health Consumers Alliance is going to be stronger through having all its funding as a peak body cut by this government. The only result from that will be that consumers and patients will have less say in the health system and that there will be fewer independent voices in our health system. The government is going to be controlling any attempt by patients to have a say through the new structure they are putting in place. We are not going to have an outside body actually trying to identify, train and create healthcare advocates who are able to speak on their own behalf—the sorts of people the member for Wright was talking about from his electorate, who have experienced issues and want to speak up about them.

What we are going to have is a completely government-controlled process. The Health Consumers Alliance is really struggling; they are surviving on a little bit of money they have in the bank, which is not very much, and on a couple of small project grants they have at the moment. The future of that organisation is completely uncertain. That is very difficult for the government to grasp, but they need to. They say, 'We have devolved this all down to the local level,' but they have not devolved any of the funding.

We would not be moving this motion today if the government had said, 'We are not going to hold this money centrally. We are going to give it to the LHNs and they will have contracts with the Health Consumers Alliance to advocate for consumers in their local health network.' But that is not what has happened here. That money has not been devolved. That money has gone, disappeared, nowhere to be seen again.

The LHNs are already cash-strapped. We know from the budget yesterday that the LHNs have a future for the next three years in which their budgets are going to be frozen. When you account for the fact that salaries will go up, that demand will go up and that the cost of providing services will go up, it is a net reduction in healthcare services for not just the next year but the next three years in South Australia.

There is no way that those LHNs will be able to absorb this cut and find additional money to give to this organisation. It is going to disappear. The funding is going to disappear. The Health Consumers Alliance has a very dicey future unless the government stand up, admit that they got this wrong, admit that funding needs to be restored to give patients and consumers a voice, give them training, give them support and make sure that we are not the only state that does not have an organisation like this to represent patients and consumers in our healthcare system.

The driver, the mission statement of the Health Consumers Alliance, is putting consumers at the centre of our health care. What we have here is the government trying to move consumers away from the centre of our health care, remove their independence and remove their ability to independently stand up and represent themselves and have a voice through all levels of our healthcare system. They should be condemned. The opposition absolutely opposes the government's amendment and we support the motion as it originally stood.

Ayes 24

Noes 21

Majority 3