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Community Affairs References Committee
Palliative care in Australia

ENGWIRDA, Mrs Fiona Ann, State Council Member, Consumer Representative, Palliative Care Queensland

VORA, Associate Professor Rohan, President, Palliative Care Queensland

KRISTENSEN, Mr John-Paul, Chief Executive Officer, Palliative Care Queensland


CHAIR: Welcome. I understand information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. We have your submissions. I invite you to make an opening statement and then we will ask you some questions.

Mrs Engwirda : Firstly, I would like to say that it was very interesting listening to the previous people presenting, when much talk about palliative care is about the individual. Today I really look forward to being able to share with you more information about the individual in our life who suffered and used palliative care: our daughter, Kate. I am a mother to three beautiful children, two of whom have significant lifelong disabilities. As a result of these disabilities, as a family we provided 24-hour nursing and complex medical care management to our profoundly disabled daughter, Kate, who passed away in May 2011, aged 2½. When you have a child, no-one tells you that one in 1,000 will suffer life-limiting illness, and never did I think it would be my child. As a parent, you expect that the government and the hospital system will provide the support that is required for you to help your child.

Whilst much good work is done for acute paediatric palliative care, in comparison to the UK where there are 44 children's hospices for a population of 63 million, Australia, with a population of 23 million people, only has two children's hospices, none of which are in Queensland. Unfortunately, in Queensland there are many issues that prevent children and their families experiencing palliative care from obtaining such support services and funding which adequately support the child and their family. For our family, this meant that our child died in another state as access to such a respite facility in Queensland simply does not exist. Much of the precious time I had with Kate when she was alive was spent advocating for services, equipment and funding in a difficult and often inequitable system.

I am an educated and articulate member of the community and I cannot stress enough how difficult this process has been for me. I am concerned that other members of the community who may be isolated, may not speak English as a first language or may be marginalised with various reasons may be lost in the system when they should be supported. I acknowledge the difference that exists between disability and palliative care but also the crossover that is intrinsically linked for many children with complex medical conditions. It is my hope that by sharing our personal experiences and recommendations that I can contribute towards highlighting the need for continued change within the paediatric palliative care and disability landscapes.

Prof. Vora : I will go through some summary recommendations from Palliative Care Queensland. We will just look at the Queensland field. We are part of Palliative Care Australia, which is the national body. Today we will focus on what is happening in Queensland. Obviously, under the new health arrangements—we have talked before about the divide between the Commonwealth and the states—there are also the issues around what happens about out-of-hospital care. Within a state, you get caught up with the systems manager, the 17 health and hospital services and a statewide paediatric service that goes across the state, so it will be interesting to see how that develops and that will hopefully help with some of these issues, but what happens about the other 17?

We come from an area where the services are already really fragmented and vary hugely, even within a metro area, let alone the rest of the state. We are worried that we will have 17 totally different services developing with different priorities on palliative care. People may have to travel from one district to another if they want to have certain services, even in end-of-life care. Firstly, we asked for improved coordination of services across Queensland and the development and implementation of a state-wide service plan. We note the South Australian plan and the strategy in Victoria, and hope that with the new state government—who have, wonderfully, called an inquiry into the whole state of affairs there—we might start getting some traction. We are very hopeful that we can work with the new government on reversing some of the issues.

The second recommendation: establish a dedicated palliative care policy and development team within Queensland Health's corporate office. Who is actually dealing with the problem seems to be a moving target. Next: development and utilisation of an effective and efficient model for providing palliative care, including the care of children and young adults—the whole spectrum, right from neonates to the elderly. The next recommendation: mandated use of robust tools to collect data and measure patient outcomes. This is absolutely vital and we need to be funded to be able to do that to get some meaningful data. At the moment, each service has to try to find somewhere within it ,along with service provision, someone who is actually going to collect this data and down clinical time to do it.

The next recommendation: more equitable and transparent funding, including funding policy, and development and implementation of a funding model that recognises rising demand for palliative care services, equipment and consumables. Once again, we note with great envy and great interest the implementation of the funding strategy in Victoria. Next: quarantining a specific allocation of percentage of any national partnership agreement funds. Any funds that come from the Commonwealth, if they are just given to subacute care, are very unlikely to end up in a significant amount in palliative care.

The next one is equitable distribution of the national partnership funding. If we had talked about 25 per cent, it would have been around $81 million. At the most, we are told there was $47 million allocated. However, we are not sure about the allocation of the funding. All we can account for is probably around $30 million of the $327 million that was given for subacute funding. The Independent Hospital Pricing Authority and the National Health Performance Authority have to really work in this end-of-life sphere to purchase quality care and have transparent agreements in relation to the purchasing intent, and measure high-quality outcomes based on palliative care linked to the evidence of family and patient preferred choices. It has to be done across settings, time and be evidence based.

The next recommendation: all health service agreements between the systems manager and the hospital and health service contains a clear section on the need for the hospital and health service to develop an end-of-life strategy for the last 12 months of life and state clearly what amount of palliative care services and the quality of the palliative care services, including outcomes based on national standards, that are being purchased and measured. These need to be monitored by the systems manager.

Next: improved access to palliative care services. Twenty-four-hour community care has to be become the basic way. There is only one service in Queensland that actually provides 24-hour specialist palliative care through doctors to nurses and some allied health.

Senator BOYCE: Where is that?

Prof. Vora : That is in Brisbane. The other service is also in Brisbane that provides 24-hour care but it is only a specialist nursing service. Within that service area, we know that they have managed to get 54 per cent home death rate. In other areas, we sit around 15 to 16 per cent of home death rate of just the palliative care registered patients. That is the sort of difference that we can bring about.

The next one: improve access to specialist palliative care for regional, rural and remote patients. We know that there are subpopulations within even the metro area that do not have access. Indigenous communities for various reasons because of the lack of 24-hour community care often do not get access to that.

Next: ensuring that appropriately skilled and experienced clinicians are available when and where required; and ensuring that all cancer and advanced disease care planning meetings in any district have a palliative medicine physician attending. If one is wanting to try to drive the referral patterns and get people involved in palliative care services, we really need to be at the table when those decisions are made about care planning. The next recommendation was improved access to palliative care for children, and the funding of a children's hospice respite facility in South-East Queensland, which Fiona mentioned so beautifully before. Next was greater support for families and carers. That included improved access to counselling and bereavement support, with a designated service for children and young adults; additional respite support for families of children and young adults, as well as older people, with terminal illness; funded volunteer support programs; and adequate high-quality training for all palliative care volunteers. Once more, I refer you to the Victorian palliative care volunteers guidelines, which I think are excellent. It also included access to 24-hour support for all end-of-life care, including respite in the home.

The next recommendation was the implementation of a coordinated plan to upskill and grow the palliative care workforce and build capacity for skilled end-of-life care by generalist service providers. We also recommended: raising awareness of palliative care and end-of-life issues through the development of a state-wide community awareness campaign to educate Queenslanders about palliative care, death and dying, to promote effective decision making at the end of life. We reiterate that a state-wide end-of-life care strategy for the last 12 months of life is required, and it needs to have some times around it. The South Australian plan states that it is for 2009-16. We need time frames for these goals. Lastly, we recommend promoting the uptake of advanced care planning and advanced health directives and enduring power of attorney documents in Queensland.

Senator MOORE: Ms Engwirda, I have heard you speak a number of times, and every time you have reinforced the need. We thank you for having the courage and the passion to talk about something that has affected you so closely. Bear Cottage is the model that you talk about all the time. I have not been there and I do not think they are coming to give evidence. Do you know where they get their money from? I do not think it comes from government.

Mrs Engwirda : I believe they have a partnership with Westmead Hospital. I am not sure of the value of that/ I know that they fundraise $2 million a year through community channels s to cover the running costs. I believe the hospital covers some of the staff costs, occupational therapists, physios and so on—

Senator MOORE: All those wonderful specialist services.

Mrs Engwirda : and they cover nursing and whatnot themselves.

Senator MOORE: We will follow up on that. The idea that you put forward at a couple of places I have heard you speak is to fund a hospice in Queensland. We know Queensland governments—no matter what flavour—will say that that is going to cost, but we will follow up and try and get that. Your submission reinforced the absolute complexity and lack of coordinated information that was given to you. I just do not get it.

Mrs Engwirda : I could sit here all day and I am sure that we probably still would not get the right—

Senator MOORE: Yes.

Mrs Engwirda : The thing that has been absolutely frustrating, and what really drives me, is that it is so multifaceted. I am a pretty savvy, educated person, and it nearly broke me on a number of occasions. You are not only dealing with the 24-hour medical management of your child who is palliative. We got the diagnosis when Kate was 12 months old, but it could be at five months or five years. You do not know what you are looking for, so you are bouncing around and the child's life is dangling by a thread every day. We have two other boys, and one of them is autistic, so day-to-day living was high stress. We never had sleep; we were constantly sleep deprived. Now we are bouncing in and out of hospital and it is really tough.

On top of that, you have to negotiate with social workers and hospital staff who do not always know what is going on in the community, and there is no central organisation that knows what is happening within community organisations. There is no central point of referral. For me it meant that I had to find out what respite funding was. I had to go and google what HACC funding was and I contacted every HACC service provider in my area, which resulted in having four interviews with the four that said they had some money so that they could throw my way. So it translated to this huge, long process whereby I got 16 hours a week which I could not even use in-home overnight to get one full night's sleep.

Senator MOORE: Because of the limitations of the system.

Mrs Engwirda : Because of the limitations. If you want any equipment you have got to again negotiate through the funding packages through FaHCSIA and through DSQ and go through the whole process, which took over a year. In the end we still payed $6,000 out of pocket. We have got private health cover, so our health fund, just to give an example, and I had broken it down in here, but for the public record our health fund in the final year of Kate's life played out $189,000. That is $189,000 our health fund saved the taxpayer and I had to battle for 12 months to get a grant for a wheelchair to the tune of $6,000. And I got 16 hours of respite. I got very good at being able to find where I needed to hone my energy in order to advocate. It concerns me that somebody who is not articulate or not as savvy is going to get lost and is going to get broken. It is just so wrong.

Here is another example of a system you are baffled at with regard to bereavement services and sibling support. The community service provider that was providing sibling support to my elder son—who is the elder of two with significant disability so he has got it doubly tough, if you like—is the only one of its kind. When Kate died she no longer became a client and so they pulled the funding. So when he most needed support he was no longer able to access it. There is currently no other option to him, so we are paying privately for the privilege of having a psychologist to look after him.

In addition to the $189,000 the health fund paid out we paid out $30,000 in after-tax dollars in medical expenses. That is not including the repatriation funeral costs and burial costs associated with her dying in another state. It is a tough journey and one that I think should be noted for the record.

Mr Kristensen : In relation to your question about Bear Cottage, they have expenditure of $2.5 million a year and it is based on charity, so they can all their money through charity. It is given to New South Wales Health, the local district, which I think operates out of Manly. Manly manage their money and then pay the staff. Eighty per cent of their costs are salaries.

Senator MOORE: If the fundraising fell over they would fall over.

Mr Kristensen : Yes.

Senator MOORE: It seems to me, Mrs Engwirda, that you interacted with every person you could interact with—

Mrs Engwirda : I am like a dog with a bone, unfortunately.

Senator MOORE: My understanding of the almoner system in hospitals was that there was an expectation that the social work was case managing families and that they would be able to point you in that direction. I get the distinct impression that that did not happen with your family.

Mrs Engwirda : I think this is where it really differentiates between public and private. When you are a private patient you have different entitlements and different social workers and they just expect that you are going to get the information. If you are in the public system there is a department in our primary hospital, and I believe in the children's hospital in Brisbane this is just a new department, that has a complex care team. The complex care team's role is to manage complex patients with regard to medical and referral and that sort of thing, but unless there is an acute crisis that team does not show up. When you are on the ward for 40 weeks at a time like we were, you expected that you bounced back and forth and basically find your way.

Senator MOORE: But you did not trigger the service, is that right? Somehow, the link between your case and the services—

Mrs Engwirda : Yes, and it is very much dependent on what the social worker you get knows. This is a difficulty in that none of the service providers that I am aware of are really doing a very good job of sharing information. You have all these organisations that cover geographical areas that are doing community nursing, you have all these different HACC service providers over the top and then you have other volunteer organisations and support networks, and they are not providing information to a central point. Doctors do not know about it. Social workers do not know about it. The people who do the best job of sharing information are mums—

Senator MOORE: That is right.

Mrs Engwirda : in the tearooms.

Senator BOYCE: The self-help groups.

Mrs Engwirda : The self-help groups, the Facebook networks. What I have learnt along my journey has never been from a hospital official or a social worker; it has been from other mums.

Senator MOORE: Mr Kristensen, I want to ask you about the role that Palliative Care Queensland plays. I know that you are already very stretched in the work you do. If a family like Mrs Engwirda's were to call you up in desperation—if they found Palliative Care Queensland; that is step 1—would you be able to give them some kind of direction? Is that the kind of support you are able to give? If Mrs Engwirda said, 'This is my situation, I live in blah; help me,' would Palliative Care Queensland have the capacity to do some of that legwork that she had to do herself?

Mr Kristensen : In Queensland, we have the Palliative Care Helpline, which operates out of Karuna. So, if a person like Fiona called in, we would talk to them. That is a one-stop shop for palliative care. If there are any problems—for example, they run into a situation where they are unable to access the service because there is a barrier and they need advocacy—then they would call us. So I see our role as being more about advocacy. If there is a problem and a family needs to overcome an obstruction, then they would call me or PCQ and we would do what we could to go behind the scenes to help them as much as possible.

Senator MOORE: But the Palliative Care Helpline, which we promote all the time, would be a first step towards that?

Mr Kristensen : Yes. They have the database for Queensland. So, if Fiona was looking for HACC services or respite care services—

Senator MOORE: Or Centrelink.

Mr Kristensen : or that sort of thing, they would be able to look through that database and, hopefully, find what she needed. But I must say that that service has not been well funded either. They have operating costs per year of about $200,000, and it is very difficult to run a call centre for the whole of Queensland on $200,000.

Senator MOORE: And keep your data up to date and all those things.

Mr Kristensen : That is right. I do not think they have had a database upgrade in about 12 years.

Senator MOORE: Ouch. Mrs Engwirda, your submission said seven times, I think, that the situation would have been different if Kate had had cancer.

Mrs Engwirda : I was going to say that.

Senator MOORE: There you go.

Mrs Engwirda : This is a difficult one, because we are talking about private charities versus state services and what have you. But, if Kate had had cancer, our eldest boy, James, would have had access to sibling support programs, and we would have had access to advocacy, respite, couples counselling, bereavement support—the list goes on. There is also equipment. There are all sorts of funding pools that you can access if you have a child with cancer. With sick kids who do not have cancer, basically you go into the disability pool, along with everybody else, at DSQ. Incidentally, after the DSQ assessment of our needs, which considered our entire family's dynamics, we were still third down the list for getting any funding for emergency respite. I was told I missed out by three places.

Senator MOORE: So there were places for three people who were more desperate, under that assessment?

Mrs Engwirda : The funding ran out, and then there were three and then there was me.

I want to make the point that a parent's role in all of this is to care for their child, for their family. It should not be left to the parent to negotiate with the disability sector or to advocate to the hospital what their needs are, continually—over and over. In all of this, it is about the child, and it is very difficult for the parent in the first place, without having to advocate as well. I have made recommendations that the pathway for sharing this information—the pathway that a parent takes from getting the child admitted to the point of diagnosis, to sharing and locking them in and referring to services—should be identified. There should be some research done and funding should be given to encourage community organisations to talk to each other and to share information, because much can be done just by talking.

Prof. Vora : Can I add two things. One is to support Fiona on this because I am worried that people would suddenly think that a hotline was going to solve the problem. If you phone a hotline you still have to negotiate all the different places that they tell you about. The Victorian model of having a consortium within a region where you try to pull together the paediatric, adult, disability or whatever other services and get them talking to each other and sorting out the problems Fiona is having is absolutely vital. If you sat in Brisbane on a hotline you would have no idea what Roma offered or what Cairns had, even though you might have a list of services.

The second point I would like to make is that there has been a change in Queensland which has been great, and that is in the development of the state-wide paediatric service. With that, some NPA funds have been used fantastically to start a process of having some inpatient beds but also having some flexible funds where you can do things, such as if there really is a need for a $6,000 wheelchair. There are some flexible funds around that so that you do not have to go and negotiate for something through disability services, this and that and everything else. It is the beginning. It is miniscule in terms of the need, and that is what we still need to determine, but it is a great change. That flexible funding model is something we really need to look at. It comes out of a South Australian and a Victorian model.

Senator MOORE: The money is low, though.

Prof. Vora : The money is low, but it could be an interesting idea in relation to palliative care packages.

Mrs Engwirda : It is about a life. It is about your child. I agree they are a small percentage of the palliative care population, but these families are going through enough. They are losing a child. You are not meant to; it is not the way nature works. So I think if we can afford them every opportunity to get help along the way then it should be done, regardless of the cost.

Senator BOYCE: I would like to follow on from what Professor Vora was saying about getting information from hotlines. Mrs Engwirda, you have probably had the experience of getting the names of four or five organisations but they all said, 'Sorry, our books are full,' or 'We don't quite do what it is you need.'

Mrs Engwirda : Yes. With the introduction of DSQ's Growing Stronger program there was a change in the way people are centrally referred. It was a matter of finding what was available at any one time. I did actually speak with a service provider to the community that provides paediatric PalCare nursing in Brisbane. Basically, as it stands with the referral process, if the service provider is recorded with DSQ as having full capacity then no referrals are sent. It is up to the organisation if they become aware of an individual to then go back to DSQ and advocate for that. So it is like roundabout, roundabout, roundabout.

Senator BOYCE: On the question of a hospice in Queensland, clearly for the last decade at least we have been moving towards community based provision of services and in-home provision of services. Can you explain for the committee how you see a hospice service sitting next to in-home and community based service?

Mrs Engwirda : You have to look historically at the context, how the decentralisation of institutionalisation has occurred. The effects on the family are incredible. I alluded before to the fact that we 24/7 nursed Kate in conjunction with another child. There is no one place where I could take my child and have a full night's sleep, a place where they were properly qualified in a lovely caring environment to look after the child. It is a lot. You do not just call up any babysitter and get them to look after your child who requires palliative care. Likewise with family, it is very difficult. For us, it was about having early intervention, being referred to the service early, being able to build relationships with that service, being able to utilise it as a respite facility with support processes such as counselling, sibling support and whatnot as well as having an option for end-of-life care.

When we went to Bear Cottage, Kate was enjoying a period of quite good health. We were referred there because we were so exhausted and could not get any out-of-home respite in Queensland. We obtained funding and we went there. Kate woke up on Saturday morning and died an hour and a half later. She had a spontaneous cardiac arrest from which I tried to resuscitate her and was unsuccessful. No one expects that is going to happen on a Saturday morning when you are on holidays. But, as it turned out, it was the most beautiful place she could have chosen to close her eyes for the last time.

Bear Cottage has exactly what it needs to make the experience a beautiful one: fingerprints were taken and turned into jewellery; locks of hair were taken and tied with pink ribbon; and she was put in a beautiful cool room where my family could come and go for three days. The boys drew pictures and we all got to say everything we needed to say. When it came time for the undertaker to come and take her, Mark and I were the ones who lovingly tucked her into the coffin for the last time. That is my definition of a good death and I want that for anybody who has a child in Queensland and who chooses it. It has strengthened my grief and it has been a very powerful experience in shaping my passion for advocacy. I see that families need an institution like Bear Cottage in Queensland to help them on this journey.

Senator BOYCE: Professor Vora, you mentioned the 24-hour service in Brisbane where the home death rate is 54 per cent compared to 15 per cent in other parts of Queensland. Is that specifically because there is a 24-hour medical service available? Is that what you are saying?

Prof. Vora : It is a combination. The nurses are backed up by a palliative care physician so that they are supported. They can phone in for the on-call service. The other part is if there is a patient that has to come back into the inpatient unit, they have a connected inpatient unit where the patient can be admitted after hours. They are on a register so the admission can be brought in by senior nurses and then seen the following morning. They do come in over weekends as well and look at that. Given that sort of support, you can have a high community death rate. We know from Western Australia that Silver Chain is able to achieve that 50 to 60 per cent community death rate as well. Obviously it is dependent on patient choice. We are not going to force them to stay at home if that is not going to work out for the carers. Given that choice, and we know that a lot of people would prefer to die at home, you can do that.

Senator BOYCE: That is the point I was going to make: whilst every bit of research suggests that the majority of people would prefer to die at home, clearly it is also a cheaper system for the medical system. Are you aware of any figures or analysis on this?

Prof. Vora : There is some analysis. I am happy to provide the report I mentioned before in my presentation to the committee. It is hard to do that work. There was a palliative care funding review in the UK which was quite extensive. There came some idea around that but it is a complex way of doing it. For a lot of us, the issue almost becomes can we afford palliative care? For us, if we do not do it they end up in the acute system. They queue at emergency, they ramp at emergency and end up in an acute bed, so you are doing it anyway. It is just that you are doing it not in a very good way and it is costing a lot of money. It is hard to know how much cheaper it is. The presentation just before said we know that an acute bed in the ICU is $4,000 to $7,000 a day. If you are talking about an acute bed in a hospital it is probably around $1,000 to $1,300 a day for an acute bed. We know that a palliative care bed in Queensland is costed at about $950 a day. We know that if you go down to a step-down facility where maybe you do not have as much need for acute intervention, pain management and a whole lot of ancillary services, it is probably around $600 or $700 a day. And in a nursing home, as we heard before, maybe it is $150 to $200 a day above what is already subsidised to put in the extra care. So it all depends on where the person is.

Of course, we know that, if they are at home and looked after by a carer and want to exploit the carer and pay them nothing, it may be $60 or $100 a day—

Senator BOYCE: For them.

Prof. Vora : That is right—and then the carer gets stressed, depressed and all the issues that go around that, so how do we pull those costs in? You might do that and exploit all the carers. They get burnt out.

Senator BOYCE: Or divorced.

Prof. Vora : Or divorced. The other issue at the moment is that we have ageing populations. You have lots of palliative care pressure. You have a look at them and go, 'My goodness me; which one is the actual patient?' This is the issue. At what stage does the other person become a patient, and do they really have the ability to care? That is where it is important to bring the assessment where you assess the care unit around this patient as well. It becomes an issue like how maybe home deaths might be like home births and at times are not such a good idea.

Mr Kristensen : I point out that on page 9 of the document we submitted we have worked out the average expense incurred by a palliative care service for keeping someone at home is $63 a day. The actual cost of providing high-quality specialist palliative care 24 hours a day is unknown, but for approximately $450 a day—half the cost of a bed—a palliative care could receive adequate in-home care for at least 12 hours a day. Currently, the specialist palliative care service in Queensland on average will give $63 a day to look after someone in the home.

Mrs Engwirda : It costs more than that in medications for my daughter, let alone the costs that impacted upon us from me having to leave the workforce and from my husband having to relocate his business to home. I would like to note, too, that Bear Cottage are using a new model whereby neonates who are taking ICU beds and not expected to live are transitioned into Bear Cottage to die in a home-like environment, which is a much more pleasant experience for the parents than dying in a traumatic ICU environment. It is the same with stillborns. It is about being able to have that extended time with the child. So I think that there are other benefits of that model in the community alongside.

Senator BOYCE: You talked about the percentage of subacute care funds and wanting a silo for palliative care funds. Could you talk a little bit more about what level you see that at and what you think has been doing on? You have been saying that only about 10 per cent of the funds you can identify as actually being spent where they were meant to be spent.

Prof. Vora : When the first lot of the equivalent of NPA subacute care funds came out we knew that 99 per cent of it was spent in rehab. The next time it came out we gained probably around 10 per cent. Geriatrics, geriatric evaluation and management, and psychogeriatrics also do badly. What tends to happen is the idea is that it goes to rehab because everybody wants to get everybody better—which is fine. The problem is that not everybody does get better. So what happens to those people who do not get better? They end up taking up acute care beds. That is where they end up: in emergency and acute care beds. If we do not fund community palliative care, we do not fund consultancy liaison services and we do not have a mechanism with activity based funding at the moment to work out how to fund those—it needs to be multidisciplinary—we need to have block grant funding. To go back to Victoria again, look at the Victorian palliative care resource allocation methodology. They look at population size. They look at the socioeconomic profile, the age profile and the remoteness factor. Queensland remoteness factor is a whole different ballgame again.

Those are the things you need to look at. When you block grant someone you say, 'What is your population' and all that. If that money goes to the health and hospital service, it will be spent on something. It may be spent in subacute care, but whether or not it gets spent in palliative care is going to be an issue of the transparent service agreement between the service manager and the hospital service. That is why I am saying we need to have some ring fencing or idea about how much needs to be allocated for palliative care.

Senator BOYCE: Has Palliative Care Queensland done any work on what size the rings in the ring fence should be, so to speak? What would the structure of this be?

Mr Kristensen : The last payment of subacute funding was $327 million for Queensland. Of that, we got approximately $30 million. The time before that, Queensland was allocated $90 million for subacute and my understanding is that rehabilitation got 99 per cent of that. We believe that we need 25 per cent of the $327 million. There are four subacute areas, one of which is palliative care. We deserve at least 25 per cent. We did not get any in the last round and all we have got in this round is less than 10 per cent. It is impossible for services to keep being funded if we do not get any money federally.

Senator BOYCE: But how that is apportioned is a state decision.

Mr Kristensen : It is a state decision, yes.

Prof. Vora : And it is a question of what happens now with block grants and ongoing funding. We are hoping to work with the new government and Queensland Health to try to work out some system that is going to be fair across the whole of Queensland so that we can look at every Queenslander being able to get access. That is why I go back to the Victorian model of consortia. We have had some idea that maybe we need to divide Queensland into eight consortia. What does that look like? What does it look like around maintenance? How do you do it? The two metro areas probably have enough of a population within them to have a group of level-five or -six services just focused there. Once you move out of that you probably need to start looking at regionalised large areas that cover big areas of Queensland and pull services together around that.

Mr Kristensen : The other point is that there is this thing called palliative care program funding in Queensland, and that is an amount of money that is given from the Commonwealth to the states each year. We are unsure how much Queensland gets, but that money is given to all of the health service districts and used for home based palliative care. In talking to the services in each region, we can see that that money has never been increased—or at least no-one has ever seen an increase in that money. That means that you have populations that are growing by as much as 25 per cent a year and the money not growing to look after them. We see situations like what we have on the Sunshine Coast, where you have enough money—about $60,000 a year—to care for people in the home for 16 people at any one time. That is just not enough. Their referral rate is growing significantly, and the money has just not kept pace. So that is another amount of money. I believe that the palliative care program money comes under an agreement with the national palliative care program, but we have been unable to clarify at the federal level how much Queensland gets and how it gets it.

Senator SMITH: I have a comment. I am a new member to the committee, but I would like to say that I thought the submission was very powerful. Particularly for me it reinforced that palliative care needs do exist outside of the ageing population.

Senator FIERRAVANTI-WELLS: Professor Vora, I take you back to your comment about the block funding and its perennial problem. Under the provisions of the Productivity Commission, the entitlement system that they envisage would surely, particularly in a community palliative setting, go a long way toward addressing those issues, particularly if there were some provisions as part of that entitlement for case management.

Prof. Vora : It could do. I guess we would need to have a look at and see what system You have the MBS item system for Medicare. There are a whole lot of gaps in that as to how you fund allied health, how you fund coordination of services—it is a range of things. GPs face exactly the same problem. Their phone calls and coordination of services are not funded; it is your patient in front of you at the time. Of course, in palliative care it is not just the patient in front of you; it is the family in front of you or the family that cares for the patient that needs to somehow be in that.

Senator FIERRAVANTI-WELLS: Have you done some work in relation to how you would see that portion of the Productivity Commission rolled out in a palliative care setting?

Prof. Vora : No, we have not.

Senator FIERRAVANTI-WELLS: If you have any thoughts, we would certainly welcome them.

Prof. Vora : We have had some work going on around item numbers for palliative care that would be available—this is just for the doctors—for home visiting, out-of-hours visiting, family support and things like that. We need to then look at a system that would allow for the OT to visit, the social worker to continue visiting to brief and support afterwards and all those things.

Senator FIERRAVANTI-WELLS: If you have some thoughts on that, I would certainly welcome them.

CHAIR: I have one last question. It seems to me, on hearing the evidence and from very recent personal experience, that having to reach out for the help all the time is yet another burden that the family has to bear.

Mrs Engwirda : Absolutely.

CHAIR: If somebody could ring or visit and say: 'These are the services that are available. We've booked you in,' it seems to me a more supportive—

Mrs Engwirda : I had a thought about how that might work. You might have a group or individuals who are registered under the FaHCSIA service for growing stronger or helping children with autism package who become, in effect, like case workers who would be paid for by FaHCSIA dollars to go in to support the family but act like a liaison. They would take them the DSQ forms and help them fill out the 70 pages. They would refer them to the hospital complex care management team. They would help them access grants for wheelchairs and fill out the forms. They would help them lock in with the local respite services. That decentralisation of services and information is not happening. If you look at the new disability section of the government website, it is not very good. There is not a lot there. It is not being utilised. Even HACK is not a service which is actively promoted. Even on the CRCC hotline I get random phone calls almost weekly from mothers and fathers in hospital who do not even know that phone number. They are supposed to act as that service, but it is not known about.

CHAIR: What if whatever your first point of contact is gave you the checklist?

Mrs Engwirda : There should be a checklist. I think there should be a division of a checklist to ensure that we have a process whereby the social worker says: 'Have you registered with DSQ? Yes you have. Have you registered with Centrelink? Yes you have. Have you been referred to this person? Okay, good. You haven't done this? All right; go here,' so it is a fail-safe mechanism to ensure that people do not miss out or get lost in the system.

CHAIR: Thank you. I think we have given you a little bit of homework, haven't we?

Prof. Vora : You have.

CHAIR: If you could get that back to us in a couple of weeks, that would be really appreciated.

Senator MOORE: I have one question. Professor, you said in your previous evidence that we had developed an assessment model for the end-of-life process. You said that it was not just on data of how many people died; it was on the quality of life, it was on the quality of death, it was all those things. Who are 'we' and can you send that to us?

Prof. Vora : Yes. On the Gold Coast we have developed a mortality review process around expected deaths. We will be presenting at the health roundtable at the end of August; but, yes, we can get that.

Senator MOORE: Fantastic. I was not sure who 'we' was, but it was the Gold Coast palliative care.

Prof. Vora : Gold Coast palliative care and part of the end-of-life strategy that we will be doing.

Senator MOORE: It would be great if we could get a copy of that. It would be really useful.

CHAIR: Thank you for sharing your story with us. I know it must be painful.

Mrs Engwirda : My pleasure. If I can help in any other way, I would be more than happy to.

CHAIR: Thank you.