It’s a great responsibility to be the Chair of Australia’s first National Mental Health Commission. In fact it’s the greatest responsibility I’ve ever had and let me tell you why as both an economist and carer.
This is important business.
Mental illness can have a devastating effect on individuals and families – I know – and, while I believe that Australia has a good health system by international standards, it has two profound weaknesses: mental health and Indigenous health, to which mental health is a very significant component. Mental health needs to be a higher priority for governments and the community at all levels.
The National Mental Health Commission is a new, independent body established to tell the truth about mental health services in Australia – the good and the bad, the gaps and the shortcomings. And it’s of great significance that we are located in the Prime Minister’s portfolio.
The Commission is the first of its kind to have a national whole-of-government scope, and a whole-of-life view – from health to employment to housing to stigma and discrimination. This signifies a commitment at the highest level to our mandate, hopefully ensures we meaningfully engage with COAG on its Ten Year Road Map for Mental Health and gives us an opportunity for the Commission to provide independent advice, showcase successes and make a case for improvement to the highest level of government.
Most of us value our health and well-being and that of our families and loved ones above all else. And I include in well-being – economic well-being.
However, there is no health and well-being without mental health. And there is no mental health without a view of the world that is wide and inclusive.
You don’t achieve mental health by relying only on the health care system. I know that both intellectually and in my heart, as I’m the carer of my daughter who has schizophrenia. I’ve seen up close the impact of mental illness on the material basics of life that many of us consider as fundamental – perhaps even as human rights – such as accommodation, education, employment and social connectedness.
You can’t achieve effective investment in mental health and well-being without your starting point being the person with mental illness and those around her or him. We’re talking about all of life – end to end and side to side.
And that’s enshrined in the National Mental Health Commission.
I sometimes wonder if people get what is really meant by this whole of life approach. Because it’s essential, evidence-based and, I believe, indisputable.
I’ll use schizophrenia as an example although labels in mental illness don’t matter as much as outcomes.
There is a myth that people with schizophrenia don’t recover.
They do recover: in fact anywhere from 20% to 40% live fulfilling lives, often with jobs.
But a focus on just the health care system gets you only so far:
Medications for people with chronic psychosis have made a huge difference. They reduce disordered thinking and harm very significantly, and make it easier for people to live in the community, but medications by themselves don’t affect recovery rates much at all – and by recovery I mean people leading the lives they aspire and wish to.
Well, it’s because no drug or hospital bed is going to repair people’s lives – the isolation caused by this condition, the demotivation and the potentially crippling loss of social skills.
For recovery to occur, you need somewhere decent, stable and safe to live, you need education and rehabilitation, you need physical health and ideally you also need a job. And while I chose schizophrenia as my example, this multi-faceted approach is true for major depression and bipolar disorder.
Those are tasks for every part of government not just the bailiwick of the ministers for health and mental health. And that is why we urge COAG to develop its promised Ten Year Roadmap for Mental Health with meaning, direction, commitment and accountability.
Mental health conditions are the third leading cause of burden of disease in Australia. They are the leading burden of disease for women, and suicide is the tenth leading cause of death for men. And it is worse in Aboriginal and Torres Strait Islander communities.
This devastating impact on individuals and our society, culture and economy means we must realign our thinking, ask more of non-health sectors and at the same time better integrate service and support systems.
The establishment of the Commission on 1 January 2012 marked a major shift in the view of mental health and suicide prevention. The Commission’s job is to observe, listen and then – with fierce independence – report and advise on what needs to happen – based on the lived experience of consumers, carers, families and the community.
My fellow commissioner Janet Meagher puts it well:
“People with mental health problems,” she says, “want the same things as everyone else. Even the most disadvantaged should be able to lead a ‘contributing life’ – whatever that means for them – and this simple goal will be our touchstone and yardstick.”
When I talk about a “contributing life”, it is what I hope for my daughter Isabella. I think of a life where people can do satisfactory and potential activities, participate in work if appropriate, take part in family, develop relationships and achieve a good proportion of their potential.
But how can you have a contributing life if you’re in poverty, isolated and struggling to re-learn social skills – despite wanting to work or do a satisfactory activity?
Be under no illusion – if you’re unemployed for a long time – you and your children are either poor already or will become poor. Many people with mental illness in Australia want to work but find themselves less likely to find a job.
The personal and national economic impact of mental health conditions is enormous and, to a large extent, preventable. There’s no amount of welfare that can replace the economic impact of having a job. Work integrates us into the community; work drags us out of poverty; work gives us independence; work helps to define us, and having a job contributes to the productivity of the nation.
Employment, in my view, must be judged as a prime outcome of our investment in mental health.
Preliminary research shows that Australian businesses lose over $6.5bn each year by failing to provide early intervention and treatment for employees with mental health conditions.
A conservative estimate from the International Labour Organisation puts the cost of mental ill health at 3% to 4% of gross domestic product in the European Union and there is no reason to assume we’re different.
A new report by the Inspire Foundation in Australia has found that mental illness in young men costs the Australian economy $3.3 billion a year.
According to a US study, workers with a mental disorder have a 50% higher likelihood of involuntary job loss, and a 30% increased likelihood of voluntary job-quits.
Let’s take the mining industry as an example.
An estimated average of between 8,000 to 10,000 employees in the mining industry experienced a common mental health illness like anxiety, depression or substance abuse over a 12 month period and that’s spread across all mining employment categories, from managers and professionals through to machinery operators and drivers.
Estimated costs to the industry including lowered productivity are between A$320 million to A$450 million per year.
And the mining industry is not alone.
Recently, we’ve seen reports about mental health within the legal profession, among teachers, young doctors, nurses, members of the media, members of the defence forces, veterans, footballers, refugees, to mention but a few.
The solutions include more knowledge in the workplace about mental illness and less fear and stigma so that people in distress can be helped as quickly as you’d expect with a physical illness.
We believe in, and act on, prevention and early detection in heart disease and diabetes – why not mental health conditions?
Groups like beyondblue and Sane Australia have innovative workplace programs but we need every workplace to be supported.
Adequate, timely and well integrated supports will require co-operation and coordination – at different times and in different ways – of employment services, health services, education institutions and benefit authorities.
Given that the majority of people with mental ill health are in work – a lot more needs to be done to ensure that workers retain their jobs. It comes back to the crucial role of good-quality jobs, good working conditions and, in particular, good management.
Data shows that job discrimination based on a person’s mental health still occurs, meaning it’s harder to get a job and harder to keep one.
This is a measure of our well-being as a nation.
There are places in the world where they achieve higher employment rates for people with mental illness than we do. According to the OECD for instance, Switzerland achieves a 66% employment rate for people with serious mental illness whereas we’re down at 48%. That is significantly fewer Australians being productive, feeling fulfilled and who have more money in their pockets and are more self reliant.
The potential for persons with so called “common mental disorders”, episodic depression for instance, to get and hold jobs and be more productive in the workplace is even greater – it is immense.
I can announce that we intend to hold an industry leaders’ roundtable to share our views and seek solutions. I have already held productive discussions with the CEO of the Business Council of Australia, the CEO of the Council of Small Business Organisations of Australia (COSBOA) and others about how we might collaborate to trigger more attention to this matter.
To sum up on this point, the area of the employment of person’s with mental illness is capable of great change. Business leaders – and agencies like Treasury – are very interested in seeing how real innovative and productive change can be achieved.
This example of how we can act as a catalyst for positive change is just one of several set out in our new, three year Strategies and Actions document – which I’m pleased to announce – is today live on our website.
How can you have a contributing life without a home?
People with mental health problems are far less likely to be homeowners and far more likely to live in unstable environments. A SANE Australia survey found that 94% of respondents with a mental illness had been homeless or without suitable housing at some point.
This is something I know a lot about given the difficulties my daughter has had finding stable accommodation.
Let me tell you that story briefly. In 2003 following the ABC TV Australian Story program about my daughter’s schizophrenia (a factor in my retirement from the ACCC), a group of carers, including my wife, got together concerned about finding secure and stable accommodation for their children, all of whom suffered from high impact mental illness, all very vulnerable, that required them to have support, care and accommodation on a long term basis even beyond the time we could care for them.
We approached the Catholic Parish of South Yarra which had a disused convent. Instead of selling the valuable property for a high price, that parish provided the convent at very low rent as part of its social commitment. These carers (all of them women incidentally) then drew up a model of accommodation, care and support. I know my way around government better than many and, after much negotiation and some pressure, our project received generous housing funding and generous and adequate staffing funding from the Victorian Government. Even with my heavy personal involvement, the process took eight years.
It is really hard for most people; both to get the resources and to break through the many hurdles there are, to involve families and carers properly.
Most people could not possibly have achieved this outcome yet the outcome has been one that meets a really important unmet need in our community. We have 14 people who will otherwise be in hospital or high intensity care or, at the other end of the spectrum, homeless or in temporary accommodation before relapse and reentry into hospital, at the Haven. We have a very high degree of family, carer and consumer involvement in the conduct of the management of the unit which we do in conjunction with the Prahran Mission. There is a huge waiting list.
Isabella was lucky that I was able to raise money for special housing. But that is a one off solution and not a system wide answer. Housing authorities and governments need to do more than provide indifferent hostels where people languish without hope.
Housing is in the Commission’s sights as a core right and a critical foundation for recovery.
How can you have a contributing life if you’re physically unwell and die young?
The physical health of people with mental illness is a scandal that receives almost no attention. According to research from the University of Western Australia and other evidence, the life expectancy gap is around 15 years at least. That is, people with mental illness live 15 years less – maybe 20 years less – than the rest of us. We die in our 80s, they die in their 60s.
Suicide is only one cause, not the main one. People are dying young of heart disease, cancer and diabetes.
People with serious mental illness have 2.5 times the risk of developing cancer than the general population. This is probably due to late diagnosis and/or lack of access to treatment.
There is a significantly higher risk of heart disease in people with schizophrenia than the general population. In other words they are more likely to get heart disease and less likely to be treated for it.
Depression according to some cardiac researchers is as potent a risk factor for heart disease as cholesterol. Stress is a significant risk factor for heart attacks.
It works both ways: mental health services may be ignoring physical illness or attributing it to mental illness symptoms and tolerate high levels of smoking and unhealthy lifestyles; while GPs and others may not be attending to the physical needs of their mentally unwell patients.
There are many reasons as I just said, but the health care system is perfectly capable of stigmatizing people with mental illness. The result can be that people with severe mental illness metaphorically or literally are put in the corner to die. This is often called the overshadowing effect. If I see a health professional about my illness, it is treated. If I am perceived by that professional person to be mentally ill, this overshadows their view and causes them to discount, down play or not treat the illness
This is an area that the Commission intends to illuminate and understand better.
How can you have a contributing life if you want to take your own?
Suicide is an important part of our brief.
Suicide – at least according to officially reported statistics, which the ABS states, are under-estimates – represents a quarter of male deaths between the ages of 15 and 40 and 20% of female deaths in their early 20s. Scandalously, we don’t know the true rates in Aboriginal and Torres Strait Islander communities but it is at least 2.5 times higher. And for every completed suicide, there are up to 50 attempts.
Suicide is complicated and not always directly related to mental illness. Dislocation, drug use, isolation and discrimination all play a role.
Obviously they all play a role but we shall be trying to understand what is happening and the reasons – again building up from the community and individual stories.
The Commission’s job is to observe, listen and then report and advise on what needs to happen.
It isn’t there to fix things itself.
That is the job of us all: state, federal and territory governments, non- government organisations, the professions, the community, the education sector and employers. We are – and this is deliberate – a small agency which doesn’t hold funds. We’re there to shine a light on what is working and what isn’t and indicate and influence better directions.
We are also not the usual group of bureaucrats that make up a Commission. There are two family members, one person with lived experience, a welfare provider from an NGO, an indigenous psychologist and academic, a business woman with mental health interests especially concerning indigenous people, and two excellent professors and a former Health Minister.
If you’re expecting the National Mental Health Commission only to dump on the system, you’re going to be disappointed. We shall point out and celebrate the successes because they are the foundations for future improvements.
There is excellence.
The Commonwealth is funding Queensland and New South Wales to build on their experience of several years, to develop a nationally consistent service planning framework which could bring us closer to more predictable and uniform services for people with mental illness no matter where they live.
There are many laudable organisations – and you always hesitate to pick out a few, but I’ll do it anyway – such as YouthReach in WA, The Personal Helpers and Mentors Program – PhaMs, the Housing Accommodation and Support Initiative in NSW and many others providing world beating solutions.
Australian researchers have pioneered online mental health services that are the envy of the world; where people can work at their own pace – with professional support – to learn how to deal with their difficulties; where the tyranny of distance and the fear of being seen walking into a “mental health service” in a small town can be overcome.
In beyondblue, we have a world leading organisation advocating and providing for people with depression and anxiety.
Professor McGorry and colleagues are world leaders in early intervention – another matter that needs high priority.
National Disability Insurance Scheme
The National Disability Insurance Scheme (NDIS) is very welcome. I have three comments:
First, it is critical that it not only applies to persons with physical disability but also to persons with significant and enduring psychiatric disability. After some debate, the Productivity Commission recommended this and I believe the government broadly supports this. It is a key need for the mental illness agenda. We are conscious there will be pressure to reduce costs by restricting the scope of the program. The NMHC will closely watch to ensure that current policy is maintained.
Second, I welcome the bipartisan support for the NDIS. Obviously the big issue is the funding and resourcing. This problem needs to be resolved in one way or another. The NMHC has no views on the funding mechanisms but one must be found.
Third, the NDIS at best covers only a small proportion of the population with mental illness. There are many other persons with mental illness outside the proposed NDIS who need care, treatment, support, accommodation, employment and other services.
I want to now deal with an issue that can’t wait till our first Report Card comes out.
It is about avoiding untoward consequences from National Health Reforms, chiefly the Activity Based Funding (ABF) one.
Under the reforms the Commonwealth would soon be paying 50% of the increase in state and territory hospital expenditure. This will give states major incentive to move mental health into hospitals. This reverses the work of many years in which we have been trying to keep people with mental illness out of hospitals wherever possible and supported to stay well in the community. Years of effort in moving to contemporary and innovative practice threaten to be undone.
We believe it is better for people to be treated in their community, very often by excellent non-government organisations, with links to services such as rehabilitation, housing and employment, rather than in hospital beds in a clinical or hospital setting except in acute cases. They can also be with or near their families and friends. Costs are usually lower. This is a people-centred approach that considers their whole life, not just health aspects.
The ABF focus on public hospital services also artificially slices up an ideal system of integrated, cross sector, community based support which should focus on what the person wants and needs, not where the money comes from.
Moreover, there are claims in the mental health community that mental health spending already has an undue bias towards hospital spending. Especially where there are expenditure cuts, many believe the first thing to go is community services and the last thing to go is hospital services, causing further imbalance. All of this makes the reforms of great concern.
Our concerns are compounded by the national pricing system reforms.
Under Activity Based Funding, funding flows to hospitals on the basis of the average cost of each service. This works well for many health “transactions” such as a standard knee operation, where operating theatre and bed times and other costs are often standard and undebatable.
While the Commissioners broadly support the pricing reform agreed by the Council of Australian Governments – COAG – which tries to match dollars to need and demand and outcomes, we’re worried about the application to mental health and you need to know about it.
First, it is unpredictable as to how long treatment can take. It may take a day, it may take six months. It is difficult to run an average pricing system in this setting. In addition, although a pricing system provides some powerful incentives for hospitals to work efficiently, there can also be some undesirable effects – undue pressure to get patients out of hospital quickly, even in standard clinical matters, gaming, and so on. Those undesirable side effects can be magnified with patients with mental illness.
If governments get the design of Activity Based Funding and its associated pricing wrong for mental health, it could drive investment and activity back into hospitals – going against the trend of the last decades – and seriously undermine effective and efficient care.
This, I believe, isn’t consistent with the spirit of the COAG agreement; with evidence based best practice models or the most efficient use of highly sought after mental health funds.
The Independent Hospital Pricing Authority has issued their pricing framework and do seem to have heard us, as have the Government, which is very gratifying and we are pleased to be on their mental health working group.
But we are still concerned about how this will roll out and will continue to be an active participant so that good decisions are made.
Our pushback on pricing and our willingness to work with governments for a better system is the first example of what a National Mental Health Commission can do uniquely.
Every Australian deserves to know how the “mental health system” is performing and the contribution other sectors are making to people’s lives.
Later this year the Commission will produce its first Report Card. It is a short time frame from our inception but the careful development of the Report Card will help us to understand how Australia is meeting people’s needs, creating a baseline to track performance year on year. Over time the Report Card will create a case for change and continuous improvement.
So here is the challenge: if you were in our shoes, how would you measure a “contributing life”?
We have a tonne of statistics on mental health and services in Australia. But they’re numbers. They’re necessary but say little about whether they’ve helped people with mental illness achieve the life they hope for themselves and their loved ones.
We’ve been asking a large number of people with lived experience: families and carers, workers at the front line of many industries, professional groups, bureaucrats and members of the general public, how they think we should be accounting for our efforts in mental health.
We’ve also been looking for hidden sources of data which might hold up a better mirror.
We’ve met with over 300 individuals and groups, done close to 60 detailed consultations with governments, services and professional and consumer groups.
We’ve performed a month-long, widely distributed and promoted on-line snapshot survey which has generated several thousand responses.
We’ve also done nearly 200 paper-based surveys, and I’d like to thank our partner, the Mental Health Council of Australia, for allowing us to piggy back on their own national roadshow to hand out these forms and obtain this input.
In the online survey, the majority either had personal experience of a mental health condition or worked in mental health. Carers and family members accounted for 15% of online survey respondents. Three quarters of the respondents were female and over half were living with partners.
We’ve conducted large scale face to face consultations with groups of first responders, system leaders, Aboriginal and Torres Strait Islander peoples and community based organisations.
And here are some of our preliminary findings:
No matter who responded, the answers as to what mattered were remarkably consistent:
Timely access to high quality, integrated services;
Reduced discrimination and increased community knowledge;
Stable, permanent homes,
A focus on recovery;
Support for families and carers;
Good employment (and remember employment is a good proxy for recovery);
Overwhelmingly people want better social and emotional well-being.
It is easy to say how the system is to be judged. It is tough to figure out how to measure some of those things but we’re already uncovering untapped sources of data.
Just one example.
We’ve found that a unique source of information is police and other “first responders”.
They know how many calls they get to help people in crisis. The police know about these people’s social and disability status, their lack of housing, low educational attainment and low income.
Police forces know how many officers are involved in each call-out and how long it takes them to find care for the person in distress.
There are a lot of police hours away from crime control and too many hours for people in mental anguish not gaining access to care. I hope the Report Card will publish data on this.
We intend to work closely with frontline workers in many sectors to see if their data can help illuminate aspects of mental health care in this country and also help build the case for smart investment in innovation and the things that work.
I can’t say too often that the National Mental Health Commission believes that there is no substitute for reporting on the lived experiences of people with mental illness and the people around them. A major part of our Report Card will be stories from people themselves. We intend that this qualitative data will be a feature from day one, and to build its veracity over time through good research, meaningfully aggregated.
We convened 18 discussion groups with Australians in their own homes to talk about the issues of mental illness and suicide. They were held across the country in all mainland states and the Northern Territory, in capital cities and regional towns.
In addition to Anglo-Celtic Australians, the groups included people from all backgrounds including Indigenous people, first and second generation migrants, members of various CALD groups, gay, lesbian, transgender and intersex people.
Many of the participants afterwards expressed their thanks for being given “an excuse” to talk about these issues. They believed that we need to make more space in our conversations with friends for these important issues. They felt that because we’re reluctant to have these conversations, we’re deprived of some of the most basic understanding of what mental health/illness really is. They reported that they’re unable to recognise symptoms in others as well as in themselves. What this suggests is that a good number of us may have difficulty knowing when to get help for ourselves as well as for others.
We have a pent up desire to talk about this issue and no shortage of personal experiences to share.
There is no point in providing services for services’ sake to make it look as though we’re doing something if people’s lives aren’t improving materially, psychologically and socially.
We are consulting with and listening to Aboriginal and Torres Strait Islander communities. They are telling us what is wrong, what is right and what is needed.
We will also hear from other groups that don’t have a sufficient voice, such as culturally and linguistically diverse, people who are severely ill, the homeless, children, youth and people who are gay, lesbian, bisexual, transsexual or intersex.
What I’ve given you today is a flavor of our thinking.
Our first National Report Card will be highly targeted to action and outcomes. Our sole purpose is to improve people’s lives and experiences.
I’ve no intention of wasting my time, the time of my fellow independent Commissioners, or taxpayers’ money on just another government commission.
The National Mental Health Commission is going to make a difference and if it doesn’t, I’ll be the first to call for it to be shut down.
But make a difference we shall, and that will be because we’ve kept true to our aim of grounding ourselves in the experiences of ordinary people whose lives have been affected by their or their loved one’s mental health.
Allan Fels is Chair of the National Mental Health Commission.