In the second of a series of four roundtables on mental health and superannuation, the industry participants and mental health experts discussed the major problem of schizophrenia, the results of interventionist programs in mental health problems and the issues associated with death and total and permanent disability insurance.
The roundtables have been sponsored by CommInsure and organised in conjunction with Industry Funds Forum. Participants at the roundtable were:
• Dr Vaughn Carr, chief executive, Schizophrenia Research Institute and director of the Centre for Brain and Mental Health Research at the University of Newcastle
• Donald MacDonald, life governor, Schizophrenia Research Institute
• Graham Long, pastor, The Wayside Chapel • Greg Staunton, director, group risk, IFS Insurance Broking
• Simon Swanson, managing director, CommInsure
• Frank Crapis, executive wholesale product manager, Comminsure
• Julie-Ann MacCormick, senior rehabilitation consultant, CommInsure
• Antonella Formosa, program director, Industry Funds Forum
• Ian Morante, fund secretary, Nationwide Super Fund
• Frank Briggs, business development and insurance manager, Asset Super
• Michael Rooney, general manager, operations, Print Super
• Gerard Parlevliet, general manager, OSF Trustee Services, Commonwealth Bank of Australia
• Bernard O’Connor, assistant chief executive and manager administration, NGS Super
• Cheryl Heath, member education manager, HESTA
• Helen Connealy, fund raising and partnerships director, Schizophrenia Research Institute
• Greg Bright, publisher Investment & Technology
• Colin Tate, executive director,
Super fund trustees have been concerned for several years about mental health problems with many of their members. Mental health related claims on funds, either because of suicide or through total and permanent disability (TPD) or income protection insurance claims, are astonishingly high.
For some funds, up to 20 per cent of death claims are the result of suicide. While there are no precise figures available – and what figures there are probably understate the problem – the average appears to be about 12 per cent.
Similarly, a small proportion of TPD claims is due to mental illness, although according to figures from IFS Insurance Broking, in at least one fund about 33 per cent of all TPD claims in a certain period were related to mental illness. In other funds in a small survey, about 5 per cent of TPD claims were related to mental illness.
The most debilitating of the common mental illnesses, affecting approximately one in 100 Australians, is schizophrenia. Dr Vaughan Carr, head of the Schizophrenia Research Institute and member of the advisory board for Super Friend, an awareness program by super funds facilitated by Industry Funds Forum and several insurance companies, says that schizophrenia is a condition with fuzzy boundaries.
Dr Vaughan Carr: “There is a range of conditions that are related to schizophrenia: schizo effective disorder, reactive psychosis, drug-induced psychosis and a collection of odd or peculiar, eccentric personality characteristics that some people have,” he said. “ And we think that they’re related to schizophrenia as well. So all up, this group would comprise probably about 2 to 3 per cent of the population at any one time, which puts it around about half as common as depression. Yet it is much more disabling condition that comes on typically in young people, in adolescence and young adults – the peak age of onset is between about 15 and 25…
“But it then sits with the young person for life. It’s a life-long condition associated with quite a range of disabilities. To give you a picture as to what it’s like, and how to recognise it and what the essence of the condition is, there are three components:
1. “The first and most obvious are the psychotic symptoms or what are called positive symptoms, comprising delusions and hallucinations, paranoia, hearing voices and so forth, when there’s nobody about, when there’s nothing else to explain it. Disorganised thinking and so on. These are the most conspicuous symptoms. These are the symptoms that bring people to attention. These are the phenomena that kept them locked up in silence for many years. But they are actually sitting there on the surface. And they occur in a whole range of other conditions and they’re probably not specific to schizophrenia. The key things that are important in schizophrenia and related conditions are the other sets of phenomena that sit underneath those delusions and hallucinations:
2. “The so-called negative symptoms, which comprise diminution in emotional expressiveness, reduced capacities to socialise and form relationships, paralysing loss of motivation, incentive or initiative, and an incapacity to achieve pleasure or to derive pleasure from life. And that may not sound like a great deal but these phenomena are very severe. And they run very deep and there’s very little that can be done about them.
3. “The other set of problems that sit under the delusions and hallucinations is the subtle intellectual impairment. It’s not like dementia, which wipes out large tracts of memory. It’s more subtle than that and it attacks sustained attention and concentration, working memory – the memory that you use to hold a telephone number in your head long enough to dial the number, and then you forget about it.
Working memory is very significantly impaired in schizophrenia, along with some other intellectual problems such as impaired verbal memory, and a decrease in what we call executive functions. These are the capacity to plan ahead, to enable forethought to occur, to initiate a set of actions and plan for them, and carry them out with flexibility and so on. Now those may not sound terribly severe either, but you put them together with the negative symptoms and these are the core phenomena of schizophrenia and these are the core phenomena that cause life-long disability and incapacity. And they’re the phenomena that account for the loss of capacity for work, and education. The loss of the ability to establish relationships during adolescence and to complete schooling and do all those developmental tasks that are important in young people establishing themselves independent of their parents, establishing relationships, establishing career path and so on. All of that gets blown out of the water by these core fundamental symptoms.”
Dr Carr said that 85 per cent of schizophrenics were on Social Security benefits, very few being able to work, although suitable rehabilitation can get some into the workforce.
“It sits there amongst the top 10 of the leading causes of disablement in the world. As I said, it’s life long, there are high rates of drug and alcohol abuse that are associated with it. Alcohol in particular, but also marijuana, amphetamines and so on. Probably about 30–40 per cent of people with schizophrenia have concurrent drug or alcohol problems as well. And of course they’re prodigious smokers.
“It’s a costly condition as well. It accounts for probably 40 –50 per cent of admissions to psychiatric facilities and about 55 per cent of bed days in hospitals because of the longer stay of people with schizophrenia compared to other conditions. “And currently we alleviate probably about 12 -13 per cent of the burden of this condition with our currently available treatments. And if we did the best we possibly could with psycho socio treatments of rehabilitation and so forth and lots of effort and there were unlimited resources, we’d still only alleviate about 20-22 per cent of the burden.”
Burden is measured by years lived with a disability and by calculating how much of that could be alleviated with best available treatment.
Dr Carr said: “The treatment is really quite unsatisfactory at the present time, as is suggested by the fact that there’s considerable amount of burden remaining after best available treatment. And that’s because we haven’t really had a significant advance in treatment since the early-to-mid 1950s, which is when anti psychotic medications were introduced. “When they were introduced they were terribly effective in enabling large lunatic asylums to be emptied of patients, because they helped to control the delusions and hallucinations. As it turns out, they’re only partially effective for that. Probably about 30-40 per cent of people discharged from hospital continue to have delusions and hallucinations.
“But [the anti-psychotic drugs] were good enough to get people out of hospital and living marginalised lives in substandard accommodation, boarding houses, and making up a significant percentage of the homeless. But the fact is, there’s been no medical advances in treatment since that time. All of the new drugs that have come onto the market have been variations on that same theme of the medications that were introduced in the early ‘50s. Psychosocial treatments are effective, cognitive therapy, rehabilitation treatments, family interventions and so forth. But I can tell you most people don’t get it because staff aren’t, in the public sector, trained to deliver them. They’re trained for case management and nothing else. And they’re very expensive. So people don’t get them. But as I said, even if they did, it would still only make a small mark.”
Researchers are looking in two directions for solutions:
1. Doing better with what is already known. This involves identifying people earlier in the course of the illness, intervening earlier and more effectively and addressing drug and alcohol use problems.
2. Fundamental basic discovery-orientated research, which is the only stream of research that will eventually identify the means to prevent or cure the disorder. There are three key components to the fundamental discovery-orientated research.
The first involves the establishment of large-scale studies of the genetics of schizophrenia, on large samples with 2000 regarded as a minimum. These require collaborative efforts of multi-centre investigators to draw together the samples.
The second strand of discovery-oriented research that needs to be undertaken is neurobiological research – the sort of stuff that takes place in laboratories looking at human tissue and animal models.
The third strand that is needed and which does not happen in Australia involves large-scale clinical trials – multi-centre clinical trials in which patients are symptomatically assessed, assigned to a treatment protocol and followed up to examine the results.
“These are the sorts of things that have been done in cancer for example, paediatric cancer in particular, where there are very large networks that operate on clinical trials platforms,” Dr Carr said.
He added that about 5 per cent of people with schizophrenia would commit suicide. “They make a fairly small number of the suicides overall compared to depression, for example, but 5 per cent of 45-50,000 people per year is quite a lot.”
Greg Bright: “Donald, what does it mean facing that, what do you do, what does it mean for families? Is it possible to have somebody back in the workforce at least part time? What does a family have to do to survive? “
Donald McDonald: “In the last three years before I retired, up to 2004, the Minister for Health commissioned me to help put the new institute on its feet. And one of the things I did was to go out and do workplace presentations about mental illness. And over a three-year period I did in excess of 400 presentations. Sometimes up to 500 or 600 or 700 workers. And what I found is that people were coming out of the woodwork from all directions. And they were talking about their wives, their husbands, their sons, their daughters, and so on.
“But the thing that impacted upon me is that the effect it had on them. How much it was causing them to have time off work, how they were not getting sleep, how their marriage was breaking up and the other kids were being neglected, and so on and so forth. So that the real crisis represented across families by this illness was really being revealed…
“Now having said that, in my case, we have three kids – Warwick who’s 33, there’s Craig who’s 31, and Lara who’s 27. Now there’s no history of mental illness in our family by the way. None whatsoever on either side. And our second-eldest son, Craig, is a property trust manager, Lara’s just graduated as an occupational therapist. But with Warwick, he was going to Randwick Boys High School, and he was a champion athlete, he was a representative rugby union player and went on all the athletic events. He was in the top maths class, he was doing very well in English, he was extremely well read. And then when he was 15 we got a report that he wasn’t attending school. So I used to often be off to work like a lot of people are, quite early in the morning, before the kids are due to leave for school. And so I decided I’d stay home and go to work late to see what was going on.
“So I discovered him in his room one morning, curled up in a ball in the cupboard with the doors closed. And I said, ‘what are you doing in there?’ And he said, ‘I’m hiding’. I said, ‘what for?’ He said, ‘people out there are trying to get me’. And I said, ‘I can’t see anybody, where are they?’ He said, ‘can’t you hear them?’ I said, ‘no I can’t hear anybody’. So took him by the hand and we went for a search, couldn’t find anybody. So I said to him, ‘look why don’t you sleep in Craig’s room?’ And so he slept in Craig’s room and then I found that all my socks were disappearing. And I discovered that he had atken them and put a pair of my socks in his mouth. And he had a stack of them under the bed, and the idea of putting socks in his mouth was to stop his thoughts getting out. And then he used to wear five or six hats, to stop his thoughts getting out. And he’d walk around the house with a radio with the music playing full blast to sort of drown out the voices.
“I took him up to the hospital and the doctor examined him and the psychiatrist examined him. And he said, your son’s got schizophrenia. And I said, ‘what the hell’s that?’ So that started me on the road, on a steep learning curve… When he was admitted he became paralysed down one side as a side effect of some of the medications. He became absolutely terrified of the medication. It became a struggle where the health system was concerned, in my experience, it was almost impossible to get him into hospital because the hospitals were full and overflowing. And what I found that when you did get him into hospital, it was a very short stay because there’s pressure on the doctors to discharge and admit new ones, the police are bringing in more all the time. And they discharge them prematurely, then there’s no sort of rehabilitation.
“It’s only a short period of time before they’re psychotic again. And generally speaking they go through a period of years before they start to develop any insight into their illness. They won’t accept they have an illness. They think that the problem is with everybody else and they don’t see the need for medication. And even if they do take the medication it only partially reduces the hallucinations and the other symptoms, it doesn’t eliminate them.
“And in addition to that it has these terrible side effects. Our son now is 33 and he’s been grappling with this for 18 years. He’s now grossly overweight because one of the side effects is, of course, diabetes. But I used to count him vomiting up to 30 times as a result of the medication. And he would go for days and days without sleeping because the medication would impact on his ability to sleep. The illness would get sort of worse at night. And the other two kids were non-events, as far as the family were concerned. They were totally being neglected.
“In the first two years of the illness I was involved in something in excess of 100 crisis situations, like suicide attempts, absconded from hospital and, up to about a year ago, he had spent about probably two-thirds of his time since age 15 in institutions. That’s in hospital, in jails, remand centres, police cells, etc. And it’s only over the recent 12 months or so that things are improved and we are keeping our fingers crossed.
“I’d put the improvement down to a few things. First of all, after many years of rejection and of lack of insight, he’s got older and developed more maturity. He has come to accept that fact that he’s got an illness and he’s come to accept the fact that he needs medication. Despite the fact that medication has many side effects, he’s come to that point. In addition to that, I think he’s realised that he can’t beat the system. He’s in and out of hospital, he’s in and out of jail. Somewhere or other he’s realised that he’s got to comply.”
McDonald, a former trade union official, said that the only reason his son was still alive was because he was able to use political connections within the labour movement to “force” hospitals to admit him when they didn’t want to. Otherwise he would be out on the street or in jail. “What’s happening, really, is that the mentally ill are just bring put in different institutions,” McDonald said. “Instead of being in mental health hospitals they are now in boarding houses and in jails. And they’re still institutionalised but they’re institutionalised in facilities that are far less caring for them, with less ability to treat them.”
McDonald said that he came to the conclusion that the only answer to the problem was an investment in science. If 78 per cent of the burden of the illness could not be addressed with the best services based on current knowledge, then the answer had to be an investment in research.
The Myer Foundation has funded the development of Australia’s first national strategic plan for psychosis research, the Australian Psychosis Research Network where Vaughan Carr and another scientist, Stan Katz, work together to co-ordinate scientists across Australia in all the different disciplines that are required to make a serious effort. The network is looking for funding of $64 million over five years from the Federal Government.
Colin Tate: “Julie-Ann, can you talk about what your unit [within Comminsure] is doing? It’s probably only applicable to people who are in the workforce. And there seems to be a large segment of the schizophrenia community who aren’t in the workforce.”
Julie-Ann MacCormick: “We do see less schizophrenia than other mental illnesses because they are not getting to working age and getting mature and moving forward. But we certainly see a lot of people with bipolar and a lot of depression and anxiety. And what we’ve been working on recently at CommInsure is trying to assist people as soon as they notify us that they are unwell whereas in the past because of the nature of the insurance contract, they’d have a waiting period which could be up to several months. So we wouldn’t even have information on this individual until way down the track…
“With the wholesale products there is that additional barrier of it having to go from the individual notifying the employer, notifying the fund, and then notifying us. So it’s several steps. It’s almost impossible to intervene at an early time…
“If we can start to act as soon as we are made aware of a claim, regardless whether we’ve admitted the claim or the waiting period has been waited out or whatever, if we can start as soon as we know, then everybody’s in a better position…. We have a lot of self-employed people with our income protection insurance, with our individual policies, and their businesses are failing while they’re waiting to receive income protection and appropriate care. So we really try to work with the individuals as soon as we can find out and gather as much information as we can, up front. So we’re sending out a rehab consultant at that first opportunity so we can work out whether they are getting any treatment, getting the details of that so we can then take it to our consultant psychiatrist and get some advice.
Greg Bright: “Do you have any figures? Are you able to quantify the success rate?
Julie-Ann MacCormick: “We started doing this in March last year so it’s just been a year. But because the more complex mental illness cases go on for several years, we don’t really know the true outcome yet. But what we have seen is a lot more people on graduated return to work.
“So, in the past they probably haven’t even been aware that the policy allows for top-up pay so they can gradually re-introduce themselves to work when it’s appropriate. If somebody has a mental illness, sometimes it’s very difficult for them to be bothered to deal with the sort of minutia of their contract and realise that these things are available. Trying to make them aware of these things in the simplest terms and letting them get that benefit is making a real difference.”
As suggested during the previous Mental Health Roundtable last December, there appears to be a disconnect between the proportion of death claims attributable to suicide and the proportion of TPD claims attributable to mental health issues.
Figures provided by IFS Insurance Broking, involving a sample of four large funds, showed the suicide rates at 14.3 per cent (of death claims), 15 per cent, 9.7 per cent and 12 per cent. Only three funds had figures for mental health related TPD claims, which were: 4.5 per cent, 2.4 per cent and 33 per cent.
Greg Staunton said that TPD claims often involved an overlay of conditions, including depression and anxiety, and the (lower) figures probably were an understatement. He said that income protection insurance was very low among industry funds, as it has historically been an opt-in product, which usually meant a take-up rate of less than 5 per cent.
Staunton predicted, however, that most big funds would have income protection insurance as part of a default option within three to five years.
Colin Tate: “Before we wrap up does anyone want to expand on Simon’s concern back to the industry about what happens post retirement?”
Gerard Parlevliet: “I can make a couple of comments… I think it would be fair to say that the industry’s only just starting now, having been in a 20-year accumulation phase, to start putting its mind to that post retirement. It’s something we need to take seriously. I don’t even think that allocated pensions necessarily are the total solution. Because if you promise people that you’re going to look after them in their retirement till they die, and the money runs out, how are they going to come and say ‘the money’s run out’? So I think there’s more work that can be done there…
“You can get a pool of people together and you say once you’ve hit 85 we will now pay something. Most people aren’t expecting to get to eighty five so you can use that pooling concept. So I think there’s lots of work that’s going on around the world on that. And we will probably see more on it, because people are starting to put their mind to it. That’s the comment I’d raise…
“I think this is fascinating. How many people go and buy a hotted up car and spend $2000 a year on insurance because they’re concerned that they may lose their car and it’s a big purchase for them? When you cut through it, for most people the biggest asset they’ve got is their ability to earn a wage for 40 or 50 years or however long they need to earn it. And also in retirement if they need to top up their income.”
Call for partnership to raise research funds
Ian Morante, fund secretary of Nationwide Super Fund, said that if the Government were to channel just the tax on the growth in super fund contributions into research, that would total between $100-150 million a year. According to APRA figures for the September 2007 quarter, total employer contributions were $12.253 billion. This indicates a total for the running at about $48 billion, Morante said. Given that the figure for the December 2006 quarter was $11.315 billion, in just nine months contributions have grown by $800 million.
If the growth of employer contributions is about $1 billion a year, then the tax on the growth, so you don’t reduce the current tax receipts to the Government, will be about 15 per cent of the $1 billion, or $150 million. “That would fund some fantastic research and projects in the community,” Morante said. “The message from the Government could be that super helps you in the future and it helps in the community now.”
Dr Vaughan Carr, the chief executive of the Schizphrenia Research Institute, said that if scientists are to tackle a big problem, such as schizophrenia, they needed to work in a co-operative basis. The research needed to be overseen and governed in a way which made scientific sense.
He said the Government should be persuaded to see that the $64 million over five years being asked for by the Australian Psychosis Research Network did not compete with the current scientific funding programs of competitive grants.