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SELECT COMMITTEE ON MENTAL HEALTH - 07/07/2005 - Mental Health

CHAIR (Senator Allison) —Welcome. This is the fifth hearing of the Senate Select Committee on Mental Health. The inquiry was referred to the committee by the Senate on 8 March this year, for report by 6 October. Witnesses are reminded of the notes they have received on parliamentary privilege and the protection of official witnesses. Further copies are available from the secretariat. Witnesses are also reminded that the giving of false or misleading evidence to the committee may constitute a contempt of the Senate. The committee prefers all evidence to be given in public but, under the Senate’s resolutions, witnesses have the right to request to be heard in camera. It is important that witnesses give notice of that intention to the committee. The committee has received your submission, which is numbered 284. Do you wish to make any alterations or additions to the document?

Prof. McGorry —There are no additions or alterations but I would highlight one or two things if that is possible.

CHAIR —Certainly. I invite you to make a brief opening statement. I am not sure how many of you wish to do so, but we will go to questions after that has been done.

Prof. McGorry —Firstly, we all appreciate very much the opportunity to give evidence before this inquiry. We passionately believe that this is a vital public health area of Australian health care that has been neglected. I am sure you have heard many stories, evidence and submissions on that. We would like to highlight some of the ways forward and to emphasise that it will be possible to achieve very significant advances in outcomes for people with mental health problems and disorders in the very near future. It is possible to achieve that now. There is enough knowledge and evidence available to dramatically improve the care of the mentally ill in Australia.

One of the ways we think this can be achieved is through a focus on young people. We have highlighted the reasons for this in the submission. Just to restate them: young people between the ages of 12 and 25 are the peak age group for the incidence and prevalence of mental disorders in Australia and around the world. In the absence of proven effective ways to prevent mental disorders, the best option in that situation, as we see in other parts of the health system, is early intervention. As we see with cancer and heart disease, it is accepted as an article of faith and it is backed up by evidence. Increasingly so, that is the case with mental health. We see a big gap between the evidence and the logic and the implementation in Australia. This has created a lot of the evidence for early intervention in mental health. We see a tremendous delay in implementing this evidence around the country.

We know that in health care generally there is about a 14-year delay between the production of evidence and implementation in the real world. It is probably longer with mental health. It has certainly been the case with the early psychosis intervention reform. This evidence has been around for a significant period of time and still is not properly implemented anywhere in Australia apart from the north-west of Melbourne. We are concerned to ensure that another generation of young people does not go by the board and does not get sacrificed by this delay in implementing things that we already know will work.

I am sure you have heard this from a number of submissions but what we see in mental health care in Australia is too little, too late. The services that are provided at the state level are tightly targeted at people with end stage illnesses, severe chronic illnesses or in very acute, high-risk situations—they may be acutely suicidal, aggressive or behaviourally disturbed. So the care is reserved, in a sense, at a state level for that group of patients. The whole concept is to intervene early and prevent people from getting to that high-conflict stage—where they almost have to force their way into care—which can be avoided, but the current model of care and resource levels at a state level are impeding that. There is a resistance to this mind-set.

There is certainly resistance to further reforming mental health structures and practices. We have encountered this in a very difficult way at both state and federal levels. There is a reluctance to embrace the logic and the evidence around focusing services on adolescents and young adults as a cultural group of young people. As we know, adolescence has lengthened as a period of transition over the past few decades—it now extends from the early teens up to the mid-twenties. That almost perfectly mirrors the onset period for mental disorders. It is a phase of life which is very sensitive to the onset of a mental health problem. We see significant vocational and social impacts of developing a mental health problem, especially if it is neglected or not treated. All of this could be tackled if there were a will and, I suppose, energy and momentum for further reform.

The evidence base is there to address it. What is required is a different structure, a different mind-set and probably different skills in the work force. Different work practices obviously need to be brought into play too. Our main message is that this is an achievable goal. We do not have to wait for the cure for schizophrenia to be discovered or for the cause of schizophrenia or bipolar disorder to be unearthed. There is a lot we can do. We have never had more effective treatments in psychiatry than we have these days. They are just not funded and supported by the community.

You have probably heard a lot of evidence from the different professional groups. The professional groups have been marginalised and divided on these issues but that does not have to be the case. These problems can be overcome. We want to try to give an optimistic message—one that requires tremendous national momentum as well as momentum from the community if it is to be translated into reality. We do not want to see another generation of young people left on the scrap heap.

I will come back to these in my closing comments but there are five recommendations we would like to make. The first is that mental health literacy and mental health first aid programs should be available throughout the Australian community so the whole community is more knowledgeable and more able to deal with the milder end of the spectrum in the early stages. Just as people do first aid courses for physical injury, the community can be trained in those sorts of approaches. It is possible, through the work of Tony Jorm, for this to be done on a mental health basis as well.

The second level is the primary care level. We think there is a missing element in this structure, called enhanced primary care, where groups of general practitioners, supported by specialist psychiatrists, drug and alcohol workers and vocational counsellors, could be brought together in local communities and regions. That would lead to a more specialised model of care for young people short of the specialist mental health systems, something that is a bit more accessible and acceptable in terms of a youth health model. This is obviously being considered by the federal government at the moment under the new policy. That is a missing element which does not exist at the moment and perhaps explains why young people have such poor access to primary care.

The third level is restructuring the specialist mental health services to ensure that we have a youth stream of care so that we do not have a child and adolescent service on the one hand and an adult service on the other, neither of which can meet the needs of this age group. This would be a new stream of care, analogous to aged psychiatry for old people, for the adolescent and young adult group.

The fourth point of reform would be the integration of drug and alcohol services with mental health services. Basically, there is such a tremendous overlap between these two sets of conditions that it makes no sense at all to have separate streams of drug and alcohol services and mental health services. It is a recipe for fragmented care and very poor quality care, which I am sure you have heard from many submissions.

Finally, we think that the National Suicide Prevention Strategy needs to be significantly overhauled. It has lost its way. It is focused on diffuse population based strategies without really any measurable outcomes. Population based methods can work—such as reduction of the means of suicide and mental health first aid, as I mentioned—but the sorts of things that have been supported over recent years have been pretty ineffective and certainly fall well short of the mark and they are not evidenced based. The mentally ill and people with emerging mental illness have been virtually neglected in the National Suicide Prevention Strategy. This view would be supported by a number of people—for example, those who collaborated on an article in the Medical Journal of Australia recently which made this point. The five things that I have mentioned are concrete things that could be done to really progress things.

CHAIR —Does anyone else wish to add to that statement?

Dr Chanen —Not at this stage.

CHAIR —First of all, thank you for hosting us at ORYGEN this morning. It was very informative and very useful for us to be able to talk with young people. I will start with our first term of reference. It asks about the extent to which the National Mental Health Strategy has been successful and implemented. Do the five points you have given us suggest that the strategy should be rewritten? Is the strategy responsible for what you describe as a focus on acute care, which is a very expensive and harmful approach to mental illness, ignoring particularly young people and early intervention and prevention? Can you comment on the strategy? Do you think that is the problem? Is that what is driving state governments down this path?

Prof. McGorry —I think the strategy has totally lost its way. The first National Mental Health Strategy was world leading. It tried to get rid of the old 19th century style institutions and replace them with a community based model of care. It was properly funded. It had money which went to the states but which was tied money, so certain things had to be done for the money to be allocated, such as the setting up of crisis teams and CAT teams. That was quite successful. That first wave of reform led to significant improvements and quality of care for people around Australia.

The second strategy was less well funded. It was much more diffuse in its aims and it moved on to new goals before the first set of goals had been bedded down. We have seen a total loss of reform momentum, so much so that the third strategy was a totally emasculated document, with a whole lot of diffuse, vague statements which everyone would support in principle but with no real practical strategies or goals set. Having some knowledge of how it was watered down, it was profoundly disappointing for people like me who wanted to see another wave of reform which would have made the first strategy work a lot better.

These days, you see that people doubt the wisdom of the deinstitutionalisation approach because it was so poorly followed through in terms of the second wave of reform and further investment. So you see people questioning it. There is no reason to question that original decision to dismantle the old institutions, but certainly there has been a failure of public policy in that it has not been properly supported into successive waves of reform to drive it home. Hopefully, that is what we are seeing in this process. We hope that it will be the way of regenerating commitment to both reform and restructuring. I think it has been very disappointing. The fact that the reform has died has let the state governments off the hook, in my opinion. They have colluded. We have certainly seen state directors of mental health colluding with the federal bureaucracy, almost stalling and just sitting back resting on their laurels, especially in the last five years.

CHAIR —And yet we are told that Victoria is leading the way on mental health services in this country.

Prof. McGorry —It is like Botswana being superior to Swaziland, in my opinion.

Senator HUMPHRIES —Professor McGorry, thank you for a very interesting visit this morning. You mentioned in your submission that if a person receives treatment at an early stage of their mental illness there are excellent prospects for a happy and healthy life. It has been a bit hard to pin down just what difference early intervention makes in quantifiable terms. Do you have any data regarding just how much the disease burden is reduced by virtue of the sorts of interventions that you provide at ORYGEN?

Prof. McGorry —There have been two large-scale randomised controlled trials of system reform based around this early intervention idea which have been published in the last 12 months, with probably close to 700 patients randomised in these studies. You see something like a 25 per cent improvement in outcome at around the 18-month to two-year mark.

Senator HUMPHRIES —Did you say 700 per cent?

Prof. McGorry —Twenty-five per cent. It is probably a substantial improvement in social outcomes. The symptomatic outcome from treating people early is very good. About 90 per cent of young people, even those with a severe illness like first episode psychosis or schizophrenia, will make a remission of their symptoms. So treatment is extremely effective at that symptomatic level. What is less effective is the social recovery. More specialised early intervention programs with recovery programs are needed, as well as the detection part of it, to ensure that that occurs. We know that social recovery lags behind the symptom recovery. Even in our service, at the moment only 50 per cent of those young people who make a remission will make a social recovery. There is recent data from the US showing that, with enhanced programs of recovery, you can get that up to 90 per cent as well. So 90 per cent of people return to work or school if there are additional inputs in the program. The evidence base is showing that, even with the most severe forms of illness, the vast majority of patients can make a full recovery both symptomatically and socially.

Senator HUMPHRIES —Without social recovery, presumably there is a greater chance of people falling back into a state of ill health?

Prof. McGorry —Not only that but, perhaps from your point of interest, there is a much greater chance of them ending up on the disability support pension. There is a big economic component, apart from the human side of things. These illnesses affect young people at the prime of their lives—in their late teens, early twenties—and if they do disable them at that point and they do not make a social and functional recovery then they are looking at decades on welfare and support, such as the DSP. We estimate that this can be substantially reduced by not only more proactive treatment and earlier detection but also much more comprehensive care in the first few years after the onset of the illness. The first five years would be the optimum period to provide the resources. What we see around the country is the resources being provided after maybe five or 10 years of illness. Only then do the patients get access to proper programs, and the bus has already left.

Senator HUMPHRIES —You mentioned that you are not getting political reception for the argument that early intervention and involvement in dealing with these problems is going to have a major social benefit and that you are frustrated by that fact. Can I put to you two things that seem to me, as a politician, to work against you. I would like to get your reaction to these things. One is that, clearly, with the huge burden of mental illness in the community—for example, depression has the highest incidence in the community and is the disease with the largest burden—so much of it is dealt with privately. People self-medicate or they curl up on the floor at home and never present to public hospitals or whatever to deal with it. If you start to grapple with the problem and provide services, you will open a floodgate of people pouring through the door wanting those services who do not access any at the moment.

The second problem is that I suspect some policy makers have a sense that recovery in mental illness does not mean cure; it means maintenance of a person on a reasonable level of control in their lives. Policy makers have a sense that you do not actually get people out of a schizophrenia or bipolar disorder; you simply help them cope with it. You need to demonstrate that, with a funding boost of the order that you are talking about, you will actually significantly reduce the disease burden—that you can measure this and make a big difference. What is your reaction to those two points?

Prof. McGorry —The first point was the floodgate argument. I completely agree with you. In talking to politicians and bureaucrats, we picked up very quickly the concern about that. The first point to make is about the value statement there. That argument is more difficult to sustain, say, in heart disease. There would not be a resistance to meeting unmet need if people were experiencing chest pain and might be suffering from a heart attack. We are dealing with the same kind of life-threatening conditions in young people as occur in middle-aged people with heart disease, and yet that argument is not used in that area. Nevertheless, we did make an effort to quantify what you are talking about. On the basis of the National Mental Health Survey we estimate that, in our catchment area of one million people, 50,000 young people in our age range would be suffering from a mental health problem or disorder in any one year. At the moment, we are treating 800 per year. So there is a huge mismatch. It is a real floodgate scenario.

Despite large-scale public awareness programs, a completely open access system of referral, web sites and all sorts of publicity—through which we have seen a 50 per cent increase in referrals over the last three years—there are still only 2,000 people presenting with severe problems who need help. We are still turning away 60 per cent of those young people, and we are very worried about that. But the problem is not going to overwhelm budgets. Budgets may need a 50 per cent to 100 per cent increase. That sounds like a lot, but it is not of the order that you might derive from epidemiological surveys. It is something that is affordable. I can quote Norman Sartorius, a former head of WHO and the World Psychiatric Association, who said that communities in a developed world can afford proper mental health care and that it is a lack of will that is the problem, not the actual money. The money is there; it is a question of the will. Could you remind me what the second point was?

Senator HUMPHRIES —The second point was about demonstrating that you can actually cure people or, if you cannot cure people, that it is worth helping them maintain a level of competence and activity in the community.

Prof. McGorry —Because the public system has been targeted at people in the end stages of illness, you get the impression that you cannot cure people with mental health problems or disorders. That is actually not the case. A substantial proportion of people with mild to moderate disorders are essentially curable. Even people at the moderate to severe end of the spectrum—for example, people with psychoses or bipolar disorder—can still spend a lot more of their lives in a normal mental health state and normal functional state with proper care. We see this all the time with the young people we treat. They might have episodes of illness but, for perhaps 90 per cent of the year, they are fine, happy, have a good quality of life and are functioning well. One could use an analogy with asthma. You might not cure asthma—there is a vulnerability to having episodes of asthma, the risk of which can be reduced by treatment—but the impact of the actual episodes can be reduced by more adequate quality of treatment. So it is the same situation.

An editorial in a recent issue of Archives of General Psychiatry made the point that mental disorders are the chronic illnesses of the young. In a sense, you are dealing with something that is an ongoing vulnerability in many people. But that is still not an argument against treating it. The burden of the disease can definitely be reduced, and some of the studies I referred to that have been published in recent years show how much it can be reduced. It is quite encouraging.

Prof. Yung —I have a point about the floodgates argument. Not everybody who has a mental illness needs specialist tertiary care. About 25 per cent of young people have depression at any one point. Not all of those will need to go to a specialist mental health service. But the tragedy is that, of the ones who do present to a service like ours, more than half of them do not get treated because we are not resourced to treat them. They are young people who have the guts to go to a mental health service, through various different routes, and then are turned away. And, as we heard before, a quarter of those people have tried suicide in the last 12 months and yet still cannot get a service. So I think we need to pay attention to adequately resourcing services for the people who do present.

Dr Chanen —Also, the pessimism about recovery that you are referring to is generated by people working in clinical services. There is a very famous paper about the clinician’s illusion: if you only ever see people who do not recover, you will think that that is the natural outcome of a disorder. In fact, people who get well and have functional recovery do not come back to services, so clinicians do not tend to see them. But clinicians tend to be pessimistic because of course they end up with an ever-diminishing number of people who have a severe chronic disorder. At the moment, we are turning away people whom we are having to triage. We are having to triage the more suicidal from the less suicidal—not the suicidal from the non-suicidal—in order to provide a service to prevent those terrible outcomes, and we are unable to provide a service to even that smaller group at the most severe end of the spectrum to prevent those pessimistic outcomes.

Senator MOORE —I am torn between being optimistic and very depressed by this whole process. I have so many questions, but I will try to limit them to two. After talking with your group, I have a tremendous sense that something positive is happening, that something can happen and that change is possible. But it is a very small light in all this darkness. Your submission focused on the fact that your services are being offered in one health area in one geographic part of one state in the country. Have you given any thought to what the funding implications would be to provide the kinds of services that you are offering at a national level? You have spoken about increasing the numbers in Victoria, but these needs are everywhere, so I would like to get some information on that.

Prof. McGorry —We have prepared two submissions on that subject. One was a federal submission in the lead-up to the last election. We costed the implementation of this model at $300 million nationally and, at state level, at $40 to $50 million within Victoria.

Senator MOORE —Can you provide us with that information?

Prof. McGorry —Yes, we can certainly forward that to you.

Senator MOORE —That would be useful.

Prof. McGorry —Other countries have picked up our model and disseminated it much more effectively than we have in Victoria or elsewhere in Australia. A lot of lip-service has been paid to it and there have been piecemeal attempts to pick it up. Finally, Victoria is starting to pick it up, to some extent. But it is limited to psychosis. It is not applied to the full range of disorders and, as we discussed this morning, young people do not fit neatly into clear-cut baskets of diagnoses. They have multiple problems; quite often, they are ambiguous. Their need for care should be the criterion for getting a service, not what diagnostic group they happen to be in. There has been tremendous resistance in Victoria and in some other parts of Australia to this idea, particularly because it involves a restructure of the service structure from child and adolescent, adult, and aged—that is, a three-tier structure. We are arguing for a four-tier structure.

When I think back to when I started psychiatry, there was a one-tier structure at that point. Old people, for example, were all herded into acute in-patient units—85-year-olds with 25-year-olds. Now we have a stream of care which better meets the needs of old people. We are arguing for a stream of care that meets the needs of young people in a prompt and timely way, and that has been resisted, at a state level in particular but nationally as well. Other countries are much more open to looking at these issues. In Britain they are spending $70 million on 50 new early intervention teams across the country—a much more ambitious and well-supported system of reform. It is disappointing that in your own country you do not get the sort of support that should be there. We could have been way ahead by now.

Senator MOORE —My second question leads directly on from that. You are operating within a system that is not sharing the work you are doing. You spoke this morning about referring people whom you cannot treat because you do not have the capacity. There are also the people you are working with who may have interaction with the other parts of the service. What does that do to the work you are doing? You have people you are working with and when they get too old for your service you have to refer them to other parts of the mental health services in Victoria. You also have people you are currently working with through your various processes who may have to go into another part of the service and back again. I would like some information on what impact that has when someone is used to getting the kinds of services they are getting through your area and then are not.

Prof. McGorry —You heard some of the consumers talk about that experience and what it was like. The international standard for this is three years of care following onset. It should probably be five. In fact, the other services that are being supported in other parts of Victoria are resourced to provide three years of care. We are resourced to provide only 18 months, which we believe is far too short. You heard what the experience of transition was like. Our suicide rates within the program are lower than the state average compared with other services while they are with us but when we discharge them back to the other services the suicide rates go right back up again. The experience is extremely adverse in the rest of the system for these patients, and I presume it is similar for patients who have never had the experience of this more youth specific service. We have been researching these questions and we are worried. We believe we should be able to treat people for a longer period of time and with more intensive sorts of treatments but it is extremely difficult to obtain support at a state level.

Dr Chanen —One of the explicit aims of some of the programs—and I run a program for early intervention for severe personality disorder—is to divert people from the adult mental health system because of the iatrogenic, that is, the medically induced, complications that attend that disorder. The very few people we do hand over who are obviously at the most severe end of the spectrum and who have not responded to treatment we dread doing because it is inevitably associated with a decline in their functioning.

Dr Lubman —With reference to linking with other services, one of the initiatives that we have really been trying to push is closer liaison with the youth drug and alcohol services in our region. We have a number of initiatives which we are working on very closely in partnership in addressing young people’s needs. For example, we have completed a number of studies showing that around 70 per cent of young people presenting to drug and alcohol services have a lifetime history of a mental health disorder. There are high rates of mental illness in other drug and alcohol populations but in every other part of the system they are ineligible to access mental health care. In fact, if you present to traditional mental health services with a full blown drug and alcohol problem they will tell you to go away because they will blame the mental health disorder on the drug and alcohol use. It is quite frustrating for our partners because the partners we are working with also service other regions of Melbourne. They have very good service from us in terms of trying to offer a rapid and integrated response to people with both comorbid mental health and substance use problems, but if they live outside our geographic region they get told to go away and there really is nothing to offer them.

Prof. McGorry —I will make one comment about substance abuse: in terms of reducing the burden of disease caused by drugs and alcohol, 50 per cent of that could be reduced through early and proactive treatment of mental disorders in young people. It has been calculated by the well-known American epidemiologist Ron Kessler that 50 per cent of substance use disorders are explained by unrecognised and untreated mental disorders in young people.

CHAIR —This issue came up yesterday or the day before. I was not able to give a reference to that figure but I did attempt to quote it, so I am glad you have done that, Professor McGorry. Dr Chanen, can you go a bit further in what you have just talked about and describe in more detail the difference between the service you provide and the adult service that someone who has been in your system—or not in your system for that matter—would get? How different would those two experiences be?

Dr Chanen —From a professional point of view, the experience is explained in part by the culture in the services. As members of the committee have commented, there is a sense of optimism in the service that we provide. The kinds of things that we can do include an open, rapid response to problems, an openness to being available, a collaborative relationship with the patient and the provision of outpatient treatment that integrates both case management and psychological treatments. We are one of the few places where psychological treatments are widely available and are implemented, and there is ample evidence to show that those treatments should be implemented. But when I teach trainee psychiatrists and ask them if psychological treatments are available in their service, they inevitably say that they are available in very few of the services or, if they are available, they are available in very limited form.

So people will get a very high quality of case management of collaborative treatment and then, when it comes to the end of that very brief 18-month period, handing them over is a very mixed bag. There are clearly some very good practitioners in the adult system, but the culture of the system militates against any kind of preventive work, so people get turned away because they are not sick enough. The kinds of people that we could actually discharge to the adult system have to be really very severely unwell and you have to make a very strong case for those people to be taken on in the adult system. If not, there is nothing else to refer those people to. Young people will not access private practitioners in any systematic way. Private practitioners are reluctant to take young people on, because they are not reliable attendees and a practitioner’s income obviously depends upon the young person turning up. There is a very limited range of people that we can actually hand on to adult mental health services, and that really is restricted to the people that Professor McGorry has referred to—the chronic, severe psychotic patients. Everybody else really has very limited access. Some of the very severely personality disordered people can be handed on and the quality of care is very variable for those people across the state.

There is a culture within mental health services of pessimism toward those patients—the kind of expectation that Senator Humphries referred to of nonrecovery and chronicity—such that, once these people are in the adult system, the pessimism is pervasive and demoralising. The iatrogenic harm that is done by that is enormous, whereas in fact the research suggests that the natural history of, for example, severe personality disorders is toward recovery, not toward chronicity. But, as I said, if you only ever see those people that keep turning up, you would imagine that this is a hopeless situation. There are ample studies now that show that these disorders are treatable, yet there is a tremendous reluctance to take those people on for treatment, and they have extremely high rates of morbidity and mortality—a mortality rate around the same as that of psychosis at about 10 per cent.

Senator SCULLION —Thank you very much, not only for the very informative trip this morning but also for a very comprehensive and visionary submission. It seems, not only from my visit this morning but also from your submission, that a very important part of the process you provide for young people is the recognition of the value of the social support network—I think they were the sorts of terms that were used this morning. Can you tell me about the family participation program and the platform team. I know we will be speaking to the platform team a little later, but I wonder if you could just tell us what sorts of supports you need to give to those particular aspects of your process, both in financial terms and in human resource terms. What sort of training is required? What sort of support do you give those two essential items?

Ms Albiston —The social recovery and the family participation?

Senator SCULLION —Basically the whole social support network you have in place, with the family participation and the support platform.

Ms Albiston —Group programs are certainly part of the treatment modalities that we use. I mentioned those this morning. I think it is important to note that with the increasing focus on individual case management, which is to be applauded, there has been a decline in the use of group programs throughout mental health services. We find that the provision of group programs is absolutely fundamental for young people. Young people learn, grow and develop through peer support. We know that for most young people, following the onset of any sort of mental health disorder across any of the diagnostic categories, one of the first things that happen is that they withdraw from a lot of their peer support groups, from their vocational activities and from their families. We often have families saying, ‘My daughter sits in her room in front of her computer all day and won’t speak to anybody’—to that degree. So the capacity to enable young people to experience a sense of belonging to a peer group and to continue to work on those developmental tasks that are vital for all young people—things like developing a sense of personal identity, a sense of independence, a sense of responsibility and all of those sorts of things—are very important tasks, I think, for a youth mental health service. We certainly use the group program modality to do that.

We also provide group programs that are very closely related to the client goals. We run a menu of group programs, if you like. So it is not that you come every day, all day and sit around and drink cups of coffee and chat; it is very much focused on where those young people want to get to. The most common sorts of goals that they talk about are having relationships with other young people. Sometimes they will come in and say, ‘I really need a girlfriend’—which we cannot help with. It is that style of thing where they are really feeling that loss of a peer support group. We can use the format of groups to make sure that there are some informal social groups where people can test their social skills. They often have very low self-esteem at that point in time. They wonder if they are of any worth to other young people or if they can feel comfortable with others. Social anxiety is extremely high in our young people, so this gives them a chance in a fairly non-threatening way to work on some of those problems that have resulted because of the onset of illness.

Other group programs look at specific areas such as vocational training and planning—those sorts of things. Creative expression is very important. Young people often find it difficult to talk about what is going on for them but can express themselves through other means. Psychological interventions often work very well in a group program format—particularly psychoeducation, where someone might come in after the onset of an illness, not quite understand it but then hear from other people in their group about what it was like for them and what has helped them overcome the illness. I think group programs, particularly for youth mental health services, are a very important component.

The family participation project has been going on for a few years. It is not funded in any great sense. We struggled to find the funding for a part-time person—Margaret, whom you met this morning. When you think about it, families are often the ones dealing with the issues for the young person. We might see someone in a couple of groups a week and we might do some face-to-face individual work with them, but it really is the family environment that they spend most of their time in, given the age of our young people. We have really tried to focus on what the families need in order to participate in the treatment and the care of that young person so that they fully understand what is going on. We also try to provide them with the emotional support that they need, through contact with other families and carers who have been through a similar situation.

As you heard Sue describe this morning, she was absolutely dumbfounded when her daughter experienced her first episode of psychosis. A lot of emotional support needs to be provided early on. Then as parents are trying to understand what is happening with their child, they need to be given the appropriate information. We run family education and information sessions. They are more about the initial stuff around how we see psychosis, because our view of psychosis is quite different. We talk about it being episodic and we talk about recovery. We describe to parents what we expect regarding psychosis, and we have tried a similar model with some of the other diagnostic groups for the young people that we see—depression and eating disorders. We also have family support groups which are more discussion groups for helping people get through it, if you like—more broad based support. They always include some information gathering but certainly provide a lot of emotional support—not from staff to families and carers but from carers themselves—so that they can support each other within the group format and outside.

We are also trying to find a way to provide contact—from our carer consultants, if you like—to families as early as possible. Phoning families in the first few weeks following admission to our service is also very important. But, again, it is not something that we have ample funding to provide. We would really like to be able to employ carer consultants. Given that this is about the onset of illness, we really need to be able to work with the families as early as possible so that the impact of that onset does not reverberate forever within that family.

Senator SCULLION —We have heard a common theme through the hearings. It has been asserted, and I certainly think this, that being part of mental health is borderline and that it often crosses the border, in terms of human rights abuses. I heard from my new friends this morning that a standard welcome to the adult mental health process is for someone to sit on you and put a needle in your bum, but I do not see that in your organisation. I do not get that feeling from your organisation at any level or from some of your consumers. Do you have any particular standards that you try to work to? You have said: ‘These are standards that we employ. There are articulated standards about how we treat our clients or our customers.’ Is there any particular training? Obviously you have an ethos there but is it an articulated ethos?

Prof. McGorry —Senator Scullion, I am glad you brought this up. This is one of the things which horrified me when I first started work in psychiatry. One of the reasons I did not do psychiatry straightaway is that I knew this kind of thing was standard. This goes back 20-odd years ago. It is very distressing to see that it is still a hallmark of the system—not only that, but it is not happening in the institutions any more; it is happening in our emergency departments all around Australia. There are stories of people being shackled and injected without even being spoken to properly. It is an absolutely disgraceful human rights situation. It would not be tolerated in any other area. It is a vital thing to address and I have no doubt it can be addressed.

You cannot completely eliminate coercion from psychiatry, because of the need to have mental health acts and involuntary treatment, but it can certainly be minimised. It stems completely from having a philosophy, which is enshrined in mental health acts around the country, for the least restrictive environment. So much lip-service is paid to that rhetoric that it is just not funny. It has to be believed and valued at all levels of the organisation that that is the way to go: that you treat people with respect, that you really have great affinity with your patients and that you identify with being in that situation yourself. Those sorts of mind-sets and emotional connections to the patient have to be there. Often in mental health settings they are not there because of the demoralised nature of the work, the underfunding and all the things you have been hearing about. It is not necessarily the staff’s fault, but it is hard to maintain the morale and a philosophy of that type in a neglected public sector practice. I think it stems from believing in that value system and having leadership that believe in it and live it themselves. There are skills related to it. I have seen standards being worked on for 10 years in psychiatry and we are really not very much—

Senator SCULLION —I was more interested in the standards of your organisation.

Prof. McGorry —Okay. I think it is something that you can put in black-and-white measures, such as measures of how much seclusion you are using, how much involuntary—

Senator SCULLION —Have you actually done that?

Prof. McGorry —Yes. We have always had levels of seclusion below the rest of the system. We monitor that. We monitor the involvement of police in admissions, which I have also seen rise back up from a period, say, five or six years ago when that was at a much lower level across the system. We see it as a failure if the police are involved in an admission, because it gives a bad message to the young person in terms of their entry into the service. Obviously we try our best to keep people out of emergency departments, where emergency physicians are in charge of the care of the patient and will overrule the mental health staff. There are practical things that can be done, but your own mental health service has to be imbued with this kind of philosophy and feeling for the patient. If coercion is involved then there have to be strategies to help the patient and the staff deal with what has actually happened, because it can be quite difficult managing some of these young people in that setting.

Andrew and I did a study about 15 years ago. We measured levels of post-traumatic stress disorder in patients who had been through these coercive sorts of experiences and found levels of about 40 per cent of post-traumatic stress in the patients. As you can imagine, such people are already psychologically compromised when they go through this. We have talked this morning about the case histories of people and I mentioned a patient that we treated in the EPPIC part of ORYGEN. On his first four or five admissions or episodes of care he had no insight at all; he had not realised that there was a need for care. He had been involuntarily hospitalised and had been quite distressed by that, despite our best efforts. Probably a year or so after he was transferred to the local area mental health service he, for the very first time, sought help.

Senator SCULLION —Would you go back and describe to me what actually happened after he had been four or five times to you? So he was still in denial, then he realised that he needed some help and he went to the hospital—and then what happened?

Prof. McGorry —This patient was obviously a bit of a slow learner but he was a very good person and when he was well he was a tremendous artist and a wonderful person. But he was a slow learner and it took him four or five goes at it before he got the hang of it and then he actually sought help for the first time. He was becoming manic and got himself to the emergency department with his parents. He was kept waiting for five hours and eventually said, in an angry tone of voice, ‘What have you got to do around here to get some assistance—commit suicide or something?’ At that point the emergency department staff seized him, shackled him and injected him.

Senator SCULLION —That is a pretty mean bit of detention, isn’t it?

Prof. McGorry —The whole insight process—the learning experience of seeking help—was completely shattered by that sort of response.

Senator SCULLION —That was obviously non-consensual. So there were no discussions about any of that?

Prof. McGorry —No. His parents witnessed this, so it was not just his account of the event available. This is happening all around Australia every day.

Dr Chanen —I will add something about the training issue and ORYGEN. The training of all case managers is, firstly, around early warning and early detection of relapse to prevent this kind of situation arising. Also, the training emphasises collaboration, which I think is not emphasised in the adult mental health system: it is a ‘doing to’ rather than a ‘doing with’ culture where one orders people and takes control of the situation, rather than actually asking them what their needs are. It has always struck me in my work in emergency departments that as soon as you ask people what they want you can defuse situations very quickly. There are times when it is unavoidable, of course, but teaching a collaborative treatment approach is vital to this. The reason it is not there in the adult system concerns a hangover from the translation of that institutional culture into the community care culture, such that the culture carriers in that environment are still those people from the days of the old institutions who were used to this coercive kind of environment. But it can be changed.

Prof. McGorry —The other thing—and Dan just reminded me of this—is that the clinical practice guidelines for the treatment of schizophrenia and also the international early psychosis treatment guidelines are another way of influencing clinical practice. Evidence based guidelines were written and we convened a process nationally and made sure that some of these things were written into the treatment guidelines for schizophrenia, which were published by the college of psychiatrists earlier this year. So at least some of these principles are there. If people choose not to adhere to them, that is a separate issue.

Prof. Yung —As Pat was saying, we have the Australian clinical guidelines for the management of schizophrenia and early psychosis in particular. The early psychosis guidelines were first published several years ago, but they do not seem to have penetrated even the neighbouring suburbs. I was working at St Vincent’s Hospital a few years ago, having come from EPPIC. I went to see what the management of early psychosis was like in that environment. I did a brief audit in which I found that even the published guidelines were not being followed and that police were being involved in about 40 per cent of the hospital’s admissions, so about 40 per cent of the young people presenting there were actually coming in shackled. Intramuscular treatment—the injection in the bum, as Senator Scullion described it—was very common. The involuntary treatment was way more common than in EPPIC. I can provide you with a paper which we have published with that data in it, showing that even in the neighbouring suburbs those clinical guidelines were not being followed.

Prof. McGorry —To be fair to the state government, they are starting to introduce that approach to care for early psychosis, not for the rest of the mental health problems of young people, across the state but it is still too little, too late, too slow.

Dr Chanen —And an artefact of that coercive environment is, of course, that there is an increased need for beds. There is a kind of sentimental attachment to the old days when we had more beds, because we were more coercive and we could utilise those beds. In a collaborative environment the need for beds decreases, not increases.

Senator SCULLION —There are four things I want you to supply on notice: the published guidelines, the report that you collaborated on when Dr Chanen was 15, any training guides that you alluded to, and any standards that you have articulated.

Ms Albiston —We certainly have sets of clinical guidelines for our service and we also have manuals that are published and distributed. All of those things would be useful.

Senator SCULLION —If you could table those we would really appreciate it.

Dr Lubman —Can I raise the issue of morale within the wider psychiatric work force. One of the things that Andrew has already alluded to is that within our environment we offer a whole range of evidence based approaches where people are trained and supported, and so people feel optimistic and confident in being able to engage with people and work with them on their issues in a very collaborative sense.

Unfortunately, in other areas in mental health in which I have worked in this state, there is a very generic model of mental health care which reduces the level of competence in the staff so that people are not aware of many of the interventions that are available for adequately treating mental health problems. That leads to this issue of people being scared of being overwhelmed by the need in the community that everybody talks about and putting up walls to stop people getting in. Unlike our service, which is very much based on early intervention—getting people in early, treating them effectively and working with them through the crisis—in other areas of mental health it is very much a brick wall. To get in, you basically have to come in in crisis, and that is not the time to really be engaging with people and working effectively. That creates a lot of trauma and psychological damage that leads to ongoing morbidity for the individual presenting at the service.

Prof. McGorry —We probably ought to say that there are one or two other examples in Victoria where the service system is functioning well. They are characterised by the features that Dan just mentioned: specialised expertise, good funding and enough beds. The equity in allocation of services is variable. Some services are relatively well resourced, but the average level of resources and genericisation varies. There is resistance at the policy level to supporting specialisation in psychiatry. That is one of the things that went by the board over the last 10 to 15 years. There is this attitude that you have to bring every part of the system up to a certain minimum standard before you can support the sort of specialisation that Dan is talking about.

CHAIR —Were you describing a private sector service?

Prof. McGorry —No, there are some public sector services in Victoria that you could say are doing a good job. I think everyone is doing their best. That is another point. We are probably very critical of other services, but we do not blame people. We understand that it is very difficult. We have some advantages in our setting. Even though I suppose we would say we are neglected by the Department of Human Services on the clinical side, we have a lot of research resources which allow us to attract high-quality people to work in the service, so we can have a better impact and better morale. I think some of our colleagues in other parts of the state do not have that advantage.

Senator FORSHAW —There could be a million questions. Thank you for the opportunity to visit the facility at Parkville this morning. When we were there you mentioned that you have an in-patient facility at Footscray. Can you quickly tell us about that?

Prof. McGorry —There is a 16-bed in-patient unit. It was located at Parkville until about a year or so ago but was rebuilt at Footscray in a very good quality fabric, purpose-built environment. Unfortunately, the geographical separation causes us significant problems. This is part of this policy of co-locating in-patient units with general hospitals.

Senator FORSHAW —So it is part of a public hospital, is it?

Prof. McGorry —Yes. It is co-located.

Senator FORSHAW —In terms of early prevention—and of course early prevention requires early detection—one of the areas in which there has been an attempt to improve that is through GPs, the Better Outcomes in Mental Health program and so on. You have made some comments in your submission about referrals from GPs. Could you expand upon any ideas you have about how we can improve the capacity of general practitioners to pick up the signs. I understand that there are a myriad of issues—for instance, whether or not young people are less likely to visit an older GP than older people would be; they may not want to communicate the issues and so on. But it seems that GPs are still very often the front line, if you like, whether it is in private practice or even at the A&E at hospitals.

Prof. McGorry —GPs have definitely got a role to play in early detection. Every GP, you could say, would have it. But, in terms of referrals, only about 10 to 15 per cent of the patients that we get referred come via GPs. So, as you say, young people quite often do not have great connection with GPs. There is a whole range of other primary care structures that they do have contact with, like school counsellors and so on—other pathways to care. Obviously general practice is, as you say, the cornerstone of the Australian health care system, so it has got to be an element in there.

In terms of providing treatment and intervention: we get calls every day of the week from GPs who have tried something simple and are really at the end of their expertise, even though many of them have actually been trained in mental health interventions now. They are looking for something more specialised. They certainly cannot get that from the standard public mental health system, in terms of young people. They cannot get access to that. So there is a need for two things, we think, which I mentioned at the beginning. First of all is an enhanced system of primary care, and probably the prototype for that would be would have been the clockwork model in Geelong, which you may have heard of, where a central venue, a youth-orientated venue, was established in the centre of the town and sessional GPs come in and do sessions. They are interested in working with young people, they are confident and they are trained. It was and still is a strong resource to deal with primary care. Young people feel comfortable going there: they are understood, and there are other youth-orientated services nearby. It is around this idea of the youth precinct. It is not just services; other youth activities are also available in that precinct. So that is something a little bit above standard general practice. Obviously we are arguing—and we have argued extensively for this—that the public mental health system needs to be structured in a congruent way.

Senator FORSHAW —I assume that, if that sort of service were more widely available and more effective, it would actually take the pressure off organisations like yours and the psychiatric hospitals. Because, if it is one in four that may experience a mental illness in a year, it is not necessarily going to be one in four that ultimately goes on to develop a full-blown mental illness for the rest of their life, is it?

Dr Chanen —It would take the pressure off in one way, in that it would provide an avenue for treatment of that group of people who do not need a specialist service. But the sheer weight of numbers of people needing a specialist service would still be there. So in a sense we would see it not as taking the pressure off but as adding another tier to treatment. We get 2,000 referrals a year. The data that Professor Yung has presented attests to the fact that those people need a tertiary type of psychiatric service. But we can only see about 800 of those. There is then another group that would benefit from that enhanced primary care model.

Senator FORSHAW —That is the one I am talking about.

Prof. McGorry —I think you do have a point, though: if you have an enhanced—in other words, semi-specialised—thing in the middle, with other resources like drug and alcohol counsellors and vocational counsellors, you will go a long way towards reducing the pressure on services like ours, but not completely, as Andrew said.

Prof. Yung —There is also the follow-up of these people. One thing that we can do is actually link them in with GPs, so that there are some people who, when they do have to be discharged from our service, can then be managed by GPs—ideally with ongoing support. So it is not just the front end; it is also the back end.

Senator FORSHAW —And that could be with other health professionals—psychologists or whatever. I have another question, and you may want to, if you could, provide me with some more detailed information on this. It is the specific issue of the role of family history of mental illness in early detection. We know that so many other chronic illnesses can be detected early if there is regular screening, whether it for breast cancer, colon cancer or whatever the complaint is. That obviously is probably a lot easier for most people than it is if there is a history of mental illness—depression or schizophrenia—in a family. People do not say: ‘Hang on, I’d better put my hand up. I may not be feeling that I’ve got an illness, but there is the potential for it.’ But I have heard evidence that there are genetic factors involved and family history can play a part. You might want to make a comment about that. I think people would run a mile away from some sort of national screening system and I am not suggesting that, but do you know what I am getting at? There is no doubt that it can run in families.

Prof. Yung —We certainly would not advocate a national screening system.

Senator FORSHAW —I am not suggesting you would, and I do not want anybody to misinterpret my remarks, but, at the same time, I understand there has been research work done over many years looking for genetic factors.

Prof. McGorry —Perhaps I could say something first and then get Alison to talk about this, because her work is very relevant to this. We know, from the latest issue of Archives of General Psychiatry, that in fact one in two people across the whole of the lifespan will develop a mental health problem at some point. It is just like physical health problems. You are going to get it at some point; there is a fifty-fifty chance of anyone developing an episode of depression or mental health problem or disorder. In that case the broad family history may not be that much use, but certainly, like any other set of illnesses, genetic vulnerability does play a part, but there are gene-environment interactions.

Senator FORSHAW —I am talking about where there have been one or two members with intensive—

Prof. Yung —Certainly we know from research that people with a family history of a mental disorder—plus other problems with living and psychiatric symptoms—are certainly at increased risk of developing a full-blown mental disorder. It is not just a family history of mental illness plus someone feels off for a day or so; it has really got to be the signs of emerging mental disorder. They are the things that it is important that people in all levels of the health system are aware of. Asking about a family history should be routine in general practice. If a young person comes along and they have dropped out of school and they are socially withdrawn and they are feeling depressed, do not just treat that at face value; if they have got a family history of schizophrenia or severe depression, then maybe they are the sort of person who does need to be monitored more closely. I am not saying put antidepressants in the water supply. To have that index of suspicion—

Senator FORSHAW —I know you are not saying that. You have got to be careful that you do not actually entrench an idea in somebody’s mind that there may actually be no ultimate concern about.

Prof. Yung —It is important to not give the message: ‘You’re doomed. You’re going to get mental illness because your mother has got it.’ It is important to, firstly, give the message that you may be at increased risk and, secondly, if you are at increased risk then we can monitor you. We can monitor you with monthly appointments with a GP or a counsellor and, if things get worse, refer you on. There is a chance that it can be prevented through early treatment, and that is what we are on about here: early treatment and prevention of ongoing and serious mental disturbance.

Dr Chanen —There are different levels of prevention. What you are referring to is a whole-of-population approach that might be used, which is called universal prevention. Then there is selective prevention, which is where you target people who have a risk factor but have no other problems.

Senator FORSHAW —Which is what we do in a whole range of other medical—

Dr Chanen —Those approaches have largely been unsuccessful thus far. The best evidence is for what is called indicated prevention, which is the kind of prevention that Professor Yung is referring to, where they have both a family history, or other risk factor, and emerging signs of a disorder. You intervene prior to them achieving a full-blown case of a disorder. That is the approach that ORYGEN uses across the board with all disorders.

Dr Lubman —I have a comment about other markers of later mental illness. One predictive factor that has come through in the literature in terms of marking the onset of later mental disorder is early problematic substance use. We know that a substantial proportion of young people who have problems with drugs and alcohol at a very early age will develop more entrenched morbidity in both substance use and mental health problems. One of the problems with the dichotomisation of the system in terms of mental health and substance use, where the substance use philosophy is really the only treatment model, is that it is just about reducing substance use. It really is not addressing the underlying psychological dysfunction that leads to ongoing mental health problems later on. What we have been trying to do at ORYGEN to address that issue is to work much more closely with the local drug and alcohol services. We have embedded mental health clinicians within their services so that we can start to address some of the underlying mental health issues within that population so as to prevent the progression of the disorder and reduce the need for referral to a tertiary service. We will be able to intervene at a much earlier stage.

Senator WEBBER —I am aware of the fact that we are running fairly late, and I am anxious to hear from some of the young people too, so I will try and keep this as brief as I can. First, I want to congratulate you on the service you provide. It seems to be one of the few genuinely multidisciplinary, patient-centred treatment programs that we have come across, although this is an early stage in the journey for us. I have two questions. One picks up on the point that was just made before. My concern is that we have these silos. We have drug and alcohol, we have mental health and we have disability. You are targeting an age group that seems to fall through the cracks. What concerns me is the way they fall through. People can be at risk of being shunted from one to the other and never treated as a whole as a patient. I welcome your comments on that. Also, how much of your time do you spend chasing the money to deliver the holistic service rather than focusing on delivering it? I am really worried about those 1,200 young people every year that are not getting to see you.

Prof. McGorry —You are right about that first point about the silos. That is an absolute bugbear of the system at the moment. I am sure you have heard lots of stories about this. Any rehabilitation resources that are provided now are split off, in Victoria, into something called PDRSS, psychiatric disability rehabilitation and support services. They are run by NGOs, which in many ways is a good thing because it creates a different sort of culture. But it is a different system of care to the public mental health system. It is a silo problem. Drug and alcohol is the worst problem that we have. In the past, 20 years ago, drug and alcohol services were run completely integrated with mental health services, certainly in the two states I have worked in, New South Wales and Victoria. They have been separated off into two separate systems of care. At the bureaucratic level, we have a state director of mental health and we have a state director of drug and alcohol. On the ground, they are separate service systems and separate cultures now. It makes absolutely no sense for it to be like that. They are the same kinds of problems and, quite often, it is the same people with different thresholds of mental health or drug and alcohol problems. If you were to recommend that that be addressed seriously, the territoriality would probably defeat it. But if it were about patient care, you would bring those systems together tomorrow under the same leadership and the same principles of service provision. That is one thing you could say.

Dr Chanen —The other silo that you have not mentioned is that of the justice system, particularly the juvenile justice system. It has extraordinarily high rates of mental health problems. It tends to get neglected among all the other silos. I think that should be included.

Ms Albiston —The other set of silos, if you like, is the disability employment agencies and vocational agencies that come under a totally different government department. We have done a lot of work with them in terms of trying to move them towards our clients and to prepare our clients for involvement with the services that they provide. But it is quite difficult because everyone is working within their own limitations and their own mandate.

Prof. McGorry —What we have basically argued for in our submission is, at the enhanced primary care level, that all of these professionals are located in the same venue in the community. In our system, Parkville, where you were this morning, is established as a youth precinct—I think the state health minister is considering this very favourably—so vocational recovery services, drug and alcohol services, and our services will all be co-located in the future. That is what we are hoping, but it is a slow process. That is the logical thing.

Regarding the second point about how much effort it is, I have spent the last two years doing everything I can think of to try to get our state government to address the resourcing issue. We have measured everything. Alison’s study, the Grey Zone study, measured this. She followed up the patients that were turned away, and showed that they did very badly even though they were initially less severe than the patients that we took in. This has fallen completely on deaf ears. The most that we can actually extract is a commitment to extend the early psychosis model slowly across the state. That is a step forward, and you will probably hear about that later on today, but it could be done now. We could be supported better.

We need to be supported not just as a direct service provider but as an engine room for further reform. You can see the research resources we have at our disposal; they will not be there forever. They have already been sitting around for about the last three years underutilised because we have not got the infrastructure to partner properly with these research dollars. We have a program grant from NHMRC beginning this year which is totally focused on this youth mental health agenda. We seem to be able to convince our research colleagues and the NHMRC of the value of this approach. We cannot convince state and federal governments. Although the federal government, I must say, is starting to look at youth mental health more seriously. It just needs to keep on growing.

I sound like I am complaining, but I still think Australia has the innovation capacity in mental health, as it has in many other areas. We have already, not just in our areas but in other areas of mental health, taught the rest of the world how to do things. We could do it a lot more effectively if we got proper support—political and community support. I think the community is ahead of the bureaucracies and the politicians at the moment.

CHAIR —We will have to finish there. We have hardly had a chance to talk with you about your research program, which is a great pity, but we have two very important sessions coming up. We do need to move on; we are already an hour late. Thank you again for your efforts in making the submission, for your ongoing work and for presenting to us today, and also for having us at ORYGEN.

[12.50 pm]