The legal rights of mental health consumers cannot be meaningfully considered outside the context of what might be called "community entitlements" – services which assist people with a mental illness to live and participate in the community.
These services need to be accessible, integrated and appropriately designed – with qualitative input from consumers in their planning and development. They must cover a wide range of needs in the different aspects of people’s lives. They must be adequately resourced and effective in assisting consumers to live successfully in the community, within their own definition of this concept.
The services that are needed cover such areas as secure and affordable housing, including supported housing, psychosocial rehabilitation and residential rehabilitation, pre-vocational and employment services, educational access and support, welfare rights advocacy, respite care, pro-active physical healthcare, dental services, recreation, community mental health centres, and accessible inpatient psychiatric services that people can use when they need to.
An observation that must be made is that the services that do exist in the community are very stretched and under pressure and that deinstitutionalisation process – whilst an essential reform which has brought improvements to the lives of many people with psychiatric disability -- has not been completely successful, because of under-resourcing by successive governments, to put it politely.
So we do see large problems of homelessness, and insecure and unsuitable housing situations among people with a mental illness. Dedicated psychiatric disability supported housing and residential rehabilitation services are currently unable to meet the demand for housing, with hundreds of people with a mental illness waiting for housing. Many welfare agencies which run homeless shelters, such as the Salvation Army or the Brotherhood of St Laurence, have had to become defacto mental health services. Many consumers are getting discharged out of outpatient clinics and into GP or private psychiatrist care, which is also in short supply. Much of the load is having to be picked up by familes, partners and friends of consumers, and these people, often now described as "carers," face great burdens in trying to meet people’s needs, or just keep their loved ones on some sort of equilibrium, sometimes with minimal support or cooperation of services. All too often services are only willing to intervene after the problem has escalated into a crisis situation.
Another point I would make, is that in Victoria there is a desperate shortage of individual advocacy for consumers. Groups such as the Victorian Mental Illness Awareness Council, the peak consumer body, are forced by circumstances of overwhelming demand to spend a lot of their scarce time and resources doing individual advocacy, which means they are severely constrained in the amount of "big picture" policy level advocacy work they can do. This work is much needed. However, it can also be acknowledged, that doing a whole lot of individual advocacy can be a force for change over time, chipping away a bit at a time. Also there is some truth in the belief among consumer organisations that the aim of promoting self advocacy -- that is to empower and inform consumers to enable them to advocate on their own behalf -- is quite a high goal to aim for.
Indeed, if more and more consumers emerged from the shadows of sub-altern disabled/invalid group status – feeling like voiceless "us’s" overwhelmed by too many powerful "thems" – the combined voices would be an irresistable force for change, meeting a not so immovable object. There is probably a lot of scope for strategic change in such a scenario.
It would also be desirable for mental health services to have a cultural shift in the way they deal with complaints, suggestions and feedback from consumers. These are not things to be fearful or defensive about, but could in time come to represent a welcome source of valuable information to inform service development and quality improvement. Involvement of consumer consultants as systems change advocates and facilitators of consumer participation processes within services, often tends to encourage such an approach.
Regarding legal rights, many consumers and their advocates over time have made the point, or there has been anecdotal evidence that, there is an enormous gap between the rights of consumers as expressed in policy and legislation and publications about one’s rights and what actually happens on the ground in services.
Often one of the central manifestations of this problem is the apparent inconsistency in mental health services about the provision of basic rights information in a user-friendly and timely way, and repeated according to consumers’ immediate level of uptake – or consumers referring to failure to provide rights information at all. I don’t think this is due to any wilful intention to deprive people of their rights within services, but these situations can arise from factors that can be called the "attrition processes" – the daily grind if you will -- that happen in mental health services on a day to day basis. Mental health services, whether clinics, inpatient units, or CATT teams can be very busy, emotionally fraught, environments, with enormous caseloads, with staff working under difficult and demanding conditions, often with shortage of staff and resources, there are factors of attrition that can lead to some consumer rights being overlooked.
Privacy matters have until recently been a problem. There are new laws, and hopefully that will make a difference, but until now there have been far too many conversations about confidential matters in corridors and staff tea rooms.
In some services, with the co-location of mental health inpatient units with general hospital wards there have been instances of consumers mental health files travelling up and down the system, so when a consumer goes in to have their bunions tended to they can find that those medical staff know all about their mental health history, even thought this may be irrelevant, and consumers have reported being treated in discriminatory ways. Unfortunately there is still a lot of stigma about mental illness and misinformed ideas, and a kind of exotic, alien, otherness about us in the way mental illness is seen in the community, and unfortunately, this can happen in the health sector too, and even in mental health services.
Consumers also often say they experience attitudinal barriers from mental health service providers, where they feel their needs are not always taken as seriously as they wish and their state of personal risk or degree of emotional pain sometimes being markedly under-rated.
There are legal provisions that a consumer can have an advocate or friend present when they are seeing a doctor or being interviewed by staff. But these provisions become meaningless at times when these meetings can be held at such short notice that it's impossible for an advocate or friend to get there in time and there’s often little flexibility about the timing of such meetings.
Consumers are legally allowed to have a second medical opinion, but the catch is that they have to pay for it. Otherwise the chances are that the second opinion will come from Dr Bloggs, down the corridor in the very same service. This is obviously not very independent at all.
Many Consumer advocates are strongly concerned about a number of perceived shortcomings regarding the role, structure and functions of the Mental Health Review Board.
Some key concerns are as follows:
In some parts of the mental health system there seems to be an enormous over-use of Community Treatment Orders, as a means of engaging with consumers, with proportions of outpatient consumers on CTOs reaching up around 50 per cent in some areas.
This seems contradictory to stated policy in the Mental Health Act and the National Mental Health Standards for services to treat consumers in the "least restrictive environment" possible. It also contradicts stated policy objectives to allow consumers, as far as possible, to participate in the development and use of their own treatment plans
Consumer advocates suspect that Community Treatment Orders often serve as an expedient and cheap method of patching over some of the huge gaps and shortcomings of the mental health system, in the wake of the deinstitutinalisation process -- which Burdekin and others have identfied as a laudable policy which in many respects has not beem adequately resourced for proper implementation.
Over stretched services must find it altogether easier to use the coercion of CTOs -- rather than what might seem a challenging and time-intensive task of seeking to engage with consumers; listening to their expressed needs, concerns and fears; discussing a range of possible treatment modalities; and coming up with a collaborative plan with the consumer; empowering the consumer by sharing the responsibility for the treatment regimen, thus giving him or her greater control over their own life, their treatment and recovery.
Numerous international studies have confirmed that consumer compliance with treatment is greatly enhanced, when the consumers have been able to meaningfully participate in the development and implementation of their own treatment plan.
Community Treatment Orders can force consumers to receive treatment against their will, and if they fail to comply, the order can be revoked and their can find themselves back in hospital quick smart. There have been some instances of consumers who decided to run away to the bush or leave the state because they were forced to have medication they felt was unsuitable. I know of a case of a man who was on a CTO and forced to take medication that he felt did not agree with him, that had horrendous side effects, and instead of negotiating with him, engaging with him or talking about possible alternative treatments, he was forced to stay on the medication. He fled and for three years was on the run, often slept rough, exposed to the elements, away from friends and family, and somehow he survived it. This kind of thing happens all too often.
There has been a lot of work put into revising the police protocols with mental health services, and there have been some improvements in this area. This is encouraging. But many consumer advocates, including myself, believe it would be good to bring back some of the aspects of the very enlightened social work policing model which underpinned the Community Policing Squad, which was initiated by the Cain government as part of its social justice strategy and scrapped by the Kennett Government. This involved the training and sensitisation of special groups of police to a range of social issues, including mental illness, and they took a "softly, softly" approach to community problems, including mental health related issues.
Another issue consumer advocates are concerned about is what they see as the need to reduce the amount of usage of seclusion areas in psychiatric inpatient units. It is often maintained that the consumer’s mental health is often compromised and progress set back by long spells in seclusion, high doses of medication, the person becoming increasingly dysfunctional and disoriented or violent, with their problems being exacerbated by getting into irregular sleeping patterns, and having few ways to constructively deal with their problems of issues. Advocates recommend the need for better negotiation and communication with the person, as early as possible, about the nature of the problems they are encountering, and attempting to negotiate with them and put some possible solutions in place. Again the over-stretched services are a factor in this too.
The role of defacto "gatekeepers" that CATT teams are often left with, because of a shortage of acute care inpatient beds, is something to be regretted, because it sometimes puts these workers in the business of fending off potential customers, or having to take a calculated risk about people’s level of safety, instead of being able to deliver support and treatment to clients in the community. When people believe they need an inpatient admission, it is often very difficult to gain that admission, and GPs, private psychiatrists, case managers and families or the person themselves, often have to make intensive representations to get patients admitted. It must be said that when CATT teams are actually able to provide support and treatment for consumers in the community, they do a good and valuable job. The aim should be to maximise their capacity to perform this role. Many private psychiatrists, GPs and community based services believe there is a need to increase the number of acute care psychiatric beds – while hospital administrations tend to argue that a range of responses is needed.
Another idea that consumer advocates have been putting forward is that of Advance Directives – some people may know this concept as "living wills." In mental health services consumers say that is often a problem that they are not taken seriously when they make a request for a particular treatment or seek to refuse a particular type of treatment, and are face with disbelief and dismissiveness, on the basis that they are considered to be "too mad" or "lacking insight" to know what is best for them. However, consumers often do have constructive suggestions for treatment modalities which for instance may have worked well in the past, or they might have heard of as helping someone else in a similar situation.
With an Advance Directive, a person makes a written statement of their preferences and non-preferences for treatment methods, at a time when they are relatively well, so that in the event that they become ill and require hospital or other treatment, the statement can be taken into consideration. Consumer advocates believe this would be a useful tool. At this stage in Victoria Advance Directives do not have official legal status, however I do know of case managers who have worked along side of clients with complex needs, to jointly draw up a contingency treatment plan, to be activated if and when it became necessary. This document would be placed in the clients file, and be accessed for instance in a hospital admission or during at-home CATT support. Advance directives do have legal status in some countries overseas, and consumer advocates are keen to see that happen here.
Other articles on this website contain other consumer-focused approaches for innovation and change in mental health services, including:
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Allan Pinches,Consumer Consultant for Mental Health.
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