PART SIX: ANALYSIS OF SUBMISSIONS AND FORUMS AGAINST THE NATIONAL STANDARDS FOR MENTAL HEALTH SERVICES

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6.2 VICTORIA

• 6.2.1 STANDARD 1: RIGHTS
• 6.2.2 STANDARD 2: SAFETY
• 6.2.3 STANDARD 3: CONSUMER AND CARER PARTICIPATION
• 6.2.4 STANDARD 4: PROMOTING COMMUNITY ACCEPTANCE
• 6.2.5 STANDARD 5: PRIVACY AND CONFIDENTIALITY
• 6.2.6 STANDARD 6: PREVENTION AND MENTAL HEALTH PROMOTION
• 6.2.7 STANDARD 7: CULTURAL AWARENESS
• 6.2.8 STANDARD 8: INTEGRATION
• 6.2.9 STANDARD 9: SERVICE DEVELOPMENT
• 6.2.10 STANDARD 10: DOCUMENTATION
• 6.2.11 STANDARD 11: DELIVERY OF CARE
• 6.2.12 STORIES OF HOMICIDE AND SUICIDE IN VICTORIA

ANALYSIS OF SUBMISSIONS AND CONSULTATIONS FROM VICTORIA AGAINST THE NATIONAL STANDARDS FOR MENTAL HEALTH SERVICES

In summary, information presented in this section was gathered from 93 submissions (see Appendix 8.3.2) and presentations made at community forums attended by approximately 210 people (see Appendix 8.1). A draft copy of this report was sent to the Premier and Minister for Health for comment. An analysis of the response from the Victorian Government (reproduced in Appendix 8.4.2) and an overall review of mental health service delivery in Victoria is contained in Part 2.7.2.

6.2.1 STANDARD 1: RIGHTS

The rights of people affected by mental disorders and / or mental health problems are upheld by the MHS.

Under this Standard, submissions and presentations indicate concerns about:

• provision of information about rights;
• complaints procedures;
• access to advocates;
• provision of information about the consumer’s mental illness, treatment and services available;
• consumers are not being treated with dignity and respect;
• the rights of carers;
• access to Auslan interpreters;
• rights of people with mental illness subject to the criminal justice system;
• non-compliance with relevant instruments protecting the rights of people with mental illness; and
• provision of information about mental health and how to access services for people from a non-English speaking background.

6.2.1.1 Provision of information about rights

We have been providing support to a man from Iraq who has a mental illness. He was a political prisoner. After September 11 he started experiencing racist remarks. He became depressed and went to hospital for care. He was admitted and was given medication. He wasn’t given any other information so he said he wanted to leave. They said he couldn’t go and put him in seclusion. When he woke up it was the next morning and he was in seclusion – he’d obviously been sedated but then they discharged him that morning. If he was well enough to leave that morning why didn’t they let him go home the night before and why did they put him in seclusion? He was discriminated against, that’s why.

(Consumer Advocate, Victoria, VMIAC Consultation #19)

The above report raises many concerns about the rights of people with mental illness: lack of provision of information about rights as soon as possible (Standards 1.2 and 11.4.E.6) in a manner that is understandable (Standard 1.3 and 11.4.E.6); lack of provision of information about mental disorders and available treatments and supports (Standard 1.8); lack of awareness of a right to have an independent advocate or support person (Standards 1.6 and 11.4.E.6); least restrictive alternative (Standard 11.4.E.1); possible lack of informed consent to medication (Standard 1.4.C.3) and equitable access (Standard 7 and Standard 11.1.1). One consumer advocate expressed concern that the problem with the provision of information about rights (Standard 1.2) may lie with misunderstandings between staff about whose responsibility this is. Standard 1.12 (documented policies and procedures exist and are used to achieve the criteria) should address these roles and responsibilities to ensure there is not confusion.

Consumers’ rights were explained to them in a way that they could understand – very few doctors and nurses know whose job it is to explain to patients what their rights are.

(Anonymous, Victoria, VMIAC Consultation #13)

6.2.1.2 Problems with the complaints procedures

Complaints diffusion is a big problem. People are afraid to complain. There’s a fear of impact if they complain. Even when the evidence is overwhelming, there is still a real fear. The more serious the complaint, the more “they” will try to discredit the consumer. The culture is such that “they” never want to help the consumer.

(Consumer Advocate, Victoria, VMIAC Consultation # 9)

Overall, many people reported that they were afraid that services would be withdrawn if a complaint was lodged. Others reported that their complaints were ignored or inappropriately dealt with. This would imply that the complaints procedures were not easily accessed, responsive and fair (Standard 1.10). One consumer advocate reported that the process has improved with the ability to lodge complaints with the Health Complaints Commission. A well functioning complaints procedure, as described by Standard 1.10, also provides a mechanism by which to ‘improve performance as a part of a quality improvement process’ (Standard 1.12) and allow for the identification of single or systemic problems and thereby allow personal redress or systemic improvement.

I want to talk about what happens to patients if you complain about staff. If you complain you go from the frying pan to the fire! …You still need the treatment and the service so you don’t complain.

(Consumer, Victoria, Morwell Forum #10)

One of the major difficulties is that if you have a mental illness almost everything you say can be discredited. The policies are fine but it’s the practices.

(Consumer Advocate, Victoria, VMIAC Consultation #14)

Complaints are still problematic but things have improved because of the Health Complaints Commission. All complaints now go to conciliation. The conciliation process is a very good thing because it gives the consumer the chance to get natural justice – to say how they felt.

(Consumer Advocate, Victoria, VMIAC Consultation #15)

…we expected this to be an informal meeting before the hospital enquiry into [X]’s death. I was told by Dr [Y] however, that the hospital enquiry was over. I queried how this could be, since no-one had contacted me. He said, “I spoke to people who had spoken to you and they knew of your concerns. These words may be seen as a metaphor for what is being perpetuated in this institution and what has been part of [X]’s life for her last weeks; a lack of communication, a lack of respect, a seeming lack of humanity.

(Carer, Mother, ex-nurse, Victoria, Submission #206)

In 1999 I put our complaint into HREOC federal it took them just on 9 months for their finding, I think it was put in the too hard basket, the outcome from HREOC was that it was a medical problem. Because [X] my wife was having active mental health problems with her schizophrenia and that she was poorly controlled while under the CTO [Community Treatment Order] a decision was made not to treat her with either chemotherapy or radiation to me that is a Human Rights issue, even the HSC [Health Services Commissioner] office told me that there 15 to 18 other such cases in Victoria like our case. When I was told this I got [lawyer] to ring the HSC office he was told the same thing I have his notes fro the phone conversation to the HSC office again a HREOC issues I think. The whole process of getting answers on complaints is unfair and one sided to the Government side. Government Departments fully funded Government groups which are fully or partly funded will not really go in and bat for the person with the illness or the carer because they fear they will loose their funding or will not be able to win tenders for services plus the groups play games with each other, I have seen it, plus they all know it them selves.

(Carer, Husband, Victoria, Submission #179)

The provision of HACC [Home and Community Care] services is a real problem – people with a mental illness don’t get HACC services. Also if you are a person with a mental illness and have a bad interaction with the service you are almost immediately excluded from further care… I took it to the Minister through VICCAG [Victorian Community Advisory Group].

(Anonymous, Victoria, Morwell Forum #3)

Given the feedback the VMIAC has received from patients who have experienced seclusion we would have to conclude that this practice is one of the most damaging treatment modalities in psychiatry… When patients try to talk about the experience or complain about it, defensive reasoning takes over and the issue of the impact of the experience on the patient is ignored and reflective practice negated.

(Victorian Mental Illness Awareness Council, Victoria, Submission #332)

A just and responsive mental health system needs complaint handling processes at all levels where consumers interact with the system. The MHLC [Mental Health Legal Centre] hears from consumers all the time who are unsatisfied with the way their complaints are being handled. It is only through learning how to investigate consumers claims of abuse and neglect within the system with good will and a lack of defensiveness that we are really going to ‘de-institutionalise the system’ At present the system remains bound by old values which mistrust consumers views, which pathologise people who complain, which makes people go on a bureaucratic paper chase and which perceives disputes that are not resolved for consumers as satisfactorily closed This will continue to breed the mistrust and sometimes hatred between people who use the system (often by force) and people who work in the system. Both groups (but particularly workers) are at risk of ‘blaming the system’ for things that are actually habitual ways of ‘playing the game’ practiced by individual providers. There needs to be transparency in complaints handling processes and management held responsible for their practice and the practice of the staff who work under them. Such accountability may mean having recourse to the Courts, which in now only an option in a narrow set of circumstances.

(Mental Health Legal Centre, Victoria, Submission #330)

Both my daughter and myself complained saying the procedure had not been fully explained to us and we were, misled. My daughter pleaded with the nurse to phone the psychiatrist ‘on call’ and ask them to come out that evening. (Which could have been done 3 weeks prior on the 26th September). Luckily for us she agreed and my daughter was finally seen at 8.30pm that night. The psychiatrist decided it would be detrimental to place her in the psychiatric ward and sent her home in my care. – I did make a formal complaint to the Dandenong Hospital a week later – I still have had no response [18.01.2005].

(Carer, Mother, Victoria, Submission #352)

Ombudsman / Independent Mental Health Commission - Given the number of consumers who do have very negative experiences as a result of their condition, whether it is within the healthcare system, in the workplace or as they deal with government services and agencies, a permanent National body should be established to monitor the situation. States would then replicate the National body. This would enable consumers to access an independent umpire and advocate specific to their circumstances when needed. This body would need trained Consumer Commissioner roles. (See New Zealand Mental Health Commission website)

(Centre for Psychiatric Nursing Research and Practice, Victoria, Submission #323)

6.2.1.3 Lack of access to advocates

Concern was expressed that consumers are not able to access advocates as advocacy services are diminishing due to decreased funding. The Centre for Psychiatric Nursing Research and Practice argued that there is a pressing need for such services in order to promote and protect the rights of people with mental illness. Standard 1.6 states: ‘Independent advocacy services and support services are actively promoted by the MHS and consumers are made aware of their right to have an independent or support person with them at any time during their involvement with the MHS’.

To offset the abuse of human rights occurring on a daily basis, the need for advocacy services is stronger than ever before, and yet funding for these services has steadily diminished. Without access to independent, fully funded, fully trained advocates, human rights will continue to be breached and the effects will continue to be long lasting and impede the recovery of so many consumers. Independent advocacy can be very effective when used pro-actively in mental health service provision.

(Centre for Psychiatric Nursing Research and Practice, Victoria, Submission #323)

6.2.1.4 Information about the consumer’s mental illness, treatment and services available not provided

Many carers stated that they did not receive adequate information about the consumer’s recently diagnosed illness or treatments available. Furthermore, many carers stated that they were not given information about services available. Standard 1.8 states: ‘The MHS provides consumers and their carers with information about available mental health services, mental disorders, mental health problems and available treatments and support services’. This is of serious concern on many levels; consent, choice, the right of a person to know about their illness and the treatment plan (and any side-effects) and for carers to be informed regarding what is and will be happening and how they best support the consumer or access support for themselves. The following quotes well illustrate this point:

When the first diagnosis comes, we’d like to see families/carers given information about the illness they’re suddenly dealing with, and all the resources available to help them and their loved one. When we were suddenly given the diagnosis “chronic paranoid schizophrenia”, which was such a surprise, we were left with the diagnosis as if it was the flu.

(Carer, Mother, Victoria, Submission #211)

And support groups help families too. Being at the courses and support groups helps families realise they’re not the only ones this has happened to, and they stop feeling alone. So it would be good if they were told about all that’s available when it suddenly happens.

(Carer, Mother, Victoria, Submission #211)

I’ve recently been to a conference in Denmark WSOP – Human Rights, not resources, are the biggest issue. In mental health it’s the only area of health where we are denied the right to refuse treatment. Forced treatment has to be seen as a failure.

(Consumer, Victoria, Melbourne Forum #4)

Despite the improvement in the amount of information about Mental Illness and the resources which are available, it is often not easy to access. This is particularly true for people who are in the private system. Private psychiatrists do not appear to provide this information to patients, nor do they pass on information to carers.

(Peninsula Carers Council, Victoria, Submission #321)

For carers faced with trying to learn about Mental Illness and with trying to find out about services which are available for consumers and carers, it is very difficult to know where to start.

(Peninsula Carers Council, Victoria, Submission #321)

The failure to provide information as detailed in the above examples, also implies that these consumers and carers were not provided with a written or verbal statement of their rights and responsibilities as required by Standard 1.2 (Consumers and their carers are provided with a written and verbal statement of their rights and responsibilities as soon as possible after entering the MHS).

6.2.1.5 Consumers are not being treated with dignity and respect

Overall, consumers, carers, organisations and workers expressed concern that during their involvement with the MHS consumers were treated with disrespect and as citizens whose rights as described under the National Standards were ignored.

Asking questions, seeking explanations, and especially making complaints are often seen as ‘difficult behaviour’ that is often dismissed as symptomatic of our illness or, as many consumers have often heard, as ‘the illness speaking’ – this is extremely offensive and, for many, traumatising.

(Insane Australia, Victoria, Submission #232)

Over all our contact with the Mental Health System has been one of frustration, Our observations are that Mental Health Patients are treated as second rate citizens and the carers are over reacting nuisances. It appears staff are under trained for compassion, Patients are quickly threatened with seclusion for minor requests or for voicing their opinion.

(Carers, Parents, Victoria, Submission #246)

I have also been patronised, infantalised, spoken to rudely, made a scapegoat to save staff getting into trouble. There have been good experiences too but too often these staff are either too junior or too intimidated to stick up publicly for humane practice. I have learnt that some people working in the system are fantastic but too often they have to do the “good stuff” surreptitiously and behind the backs of senior clinicians who continue to have too much power.

(Consumer, Victoria, Submission #240)

Young people in the mental health system are extremely vulnerable and disempowered. They are much less likely to be listened to than adults and are often not even told what is going on with their own treatment. Their opinion is frequently discredited and their wishes ignored.

(Youth Participation Worker, Victoria, Submission #255)

6.2.1.6 The rights of carers

The Peninsula Carers Council raised concerns about the treatment and rights of carers. They argued that mental health services need to help and support carers as much as possible and treat cares with respect. As much of the care for people with mental illness is provided in the community by families, the need for mental health services to develop a comprehensive policy on the role and function of carers to define their rights is argued so that the rights of carers are formally recognised:

Members of the PCC have consistently heard stories of carers being dismissed, treated with disrespect and not listened to by health professionals. Not only do carers need the help and support of health professionals for the difficult job they are doing, but they are entitled to be treated with respect.

(Peninsula Carers Council, Victoria, Submission #321)

6.2.1.7 Lack of access to Auslan interpreters

One case manager expressed concern regarding the lack of access to interpreters for people with mental illness who have hearing impairment. This barrier results in additional stress for both the consumer and their case manager, who then have to try and find funding and a service that can provide an interpreter. Standard 1.7 states: ‘The MHS upholds the right of the consumer and their carers to have access to accredited interpreters’.

The GP prescribed antidepressants and made a referral to a local counselling service. [Z] took referral information from the doctor and myself and took almost 2 weeks to come to the decision that they were unable to provide a service to my client solely on the basis that they had no funding for an interpreter. [X] is deaf and requires an auslan interpreter for her counselling sessions. [Z] agreed that they were the most appropriate local service for my client but none the less were unable to offer service. I was and remain outraged by this clear discrimination of my client. I am now looking at funding options to try to obtain money for an interpreter for the counselling sessions, as well as looking at other services in the region who I can refer [X] to who will provide an interpreter, but all this is time consuming which causes additional stress on [X] while they wait for supports.

(Case Manager, Victoria, Submission #337)

6.2.1.8 Rights of people with mental illness subject to the criminal justice system

VMIAC raised concerns with regard to the rights of people with mental illness in the criminal justice system and the need to be particularly vigilant about protecting the rights of these consumers and their access to treatment and support services. VMIAC raised concern that the rights of people with mental illness are not being protected:

A recent example perhaps best describes how politics influences decision making rather than standards of treatment and care. A forensic patient put in an application to the Forensic Leave Panel for unescorted leave. His treating team, the Panel judge, psychiatrist and community member supported the leave application. The member from the Office of the Chief Psychiatrist however did not support the leave. The reason given - What if you are out on leave and someone recognised you and phoned the Herald Sun. What does it say about the independence of the Office of Chief Psychiatrists when it allows the Herald Sun to influence the Office’s duty to standards of treatment, care and rehabilitation?

(VMIAC, Victoria, Submission #332)

6.2.1.9 Non-compliance with relevant instruments protecting the rights of people with mental illness

Concerns were expressed by the Mental Health Legal Centre, Insane and the Brotherhood of St. Laurence and Catholic Social Services Victoria that due to a lack of resources, human rights issues are being “ignored, overlooked, diminished and minimised”. As a result, people with mental illness and their families are “one of the most acutely disadvantaged groups in Australia”.

Standard 1, as noted above, states: ‘The rights of people affected by mental disorders and / or mental health problems are upheld by the MHS’. Further, Standard 1.1 state: ‘Staff of the MHS comply with relevant legislation, regulations and instruments protecting the rights of people affected by mental disorders and / or mental health problems’. Included in the notes to Standard 1.1 are: The Australian Health Ministers’ Statement of Rights and Responsibilities, the UN Prinicples on the Protection of People with a Mental Illness and Improvement in Mental Health Care, departmental codes of conduct and mental health legislation. According to the following quotes, the human rights of people with mental illness and their families and carers are not being upheld:

There is anecdotal data to suggest that despite the consumer having the right to participate in their treatment planning, in many instances, this is not happening. This has serious consequences when CTO’s [Community Treatment Orders]] are simply resigned every 6 months.

(Centre for Psychiatric Nursing Research and Practice, Victoria, Submission #323)

It is our experience that because resources are limited, there is a reluctance to allow rights to be a focus. There is a sense that treatment, or the lack of it, is the most important thing to focus on and that any issues which divert from this focus are an attempt to divert precious resources. As a result, we believe that rights are constantly ignored, overlooked, diminished and minimised as not important. This spills over into accountabilities and the quality of and transparency of decision-making in relation to service delivery. We understand that mental health service delivery and rights are a complex set of competing and complimentary issues that need to be delicately handled. However, we do not believe that that balance is right and as a result, human rights are constantly being trampled.

(Mental Health Legal Centre, Victoria, Submission #330)

The current, limited public debate on mental health in Australia today focuses largely on the appalling lack of resources for mental health services. At Insane we agree that mental health services are grossly neglected in this country and that many people are dying, mostly through suicide, from this neglect. This neglect needs to be seen as not just a failure to resource an essential service but as a violation of our fundamental human rights.

(Insane Australia, Victoria, Submission #232)

People living with a mental health problem are one of the most acutely disadvantaged groups in Australia. They are more likely to be living in poverty, with limited access to affordable and secure accommodation, to have low education and to be without employment. Sadly we have the knowledge and abilities to treat people. However, the failure of governments to adequately resource services and the lack of commitment to genuine reform have lead to a chronic deterioration of care and support to consumers, their families and carers. It is not acceptable that people seeking relief from the symptoms of their mental illness are unable to receive the help that will preserve their rights and dignity. The ability of consumers to access service systems across the spectrum of care demands that government urgently increase their investment into services.

(Brotherhood of St. Laurence and Catholic Social Services Victoria, Victoria, Submission #324)

6.2.1.10 Lack of information about mental health and how to access services available for people from a non-English speaking background (NESB)

Concern was expressed that some community groups that do not speak English have very little access to information about mental health, mental illness, how to access services and the right to an interpreter. This knowledge is critical for service access and the promotion and protection of the rights of people with mental illness who speak a language other than English:

There are some areas of problems that the Polish community has to face:

•  There is a lack of information about mental health issues available in Polish and what is available is difficult to locate and it is not distributed to the community. Most Poles are unfamiliar with how to locate this information in Polish.

•  There is a lack of prevention and early intervention programs for Polish people, which contribute to the high admission rate to mental health services at the crisis stage.

•  The Polish community is not familiar with mainstream mental health services or whether any provide culturally and linguistically appropriate support.

•  The stigma around mental illness for the Polish community prevents seeking assistance if people are aware of services.

•  We have conducted research to identify the understanding of and that measures the level of depression among the Polish community. 174 people participated and 32% self identified as experiencing from depression. 52% are not aware of any services they can access, 30% would seek assistance from their GP. These figures show that the majority of Polish people would not know where to ask for help and the chances that they need help to deal with depression is high.

(Australian Polish Community Services, Victoria , Submission #329)

6.2.2 STANDARD 2: SAFETY

The activities and environment of the MHS are safe for consumers, carers, families, staff and the community.

Under this Standard, submissions and presentations indicate concerns about:

• consumers not being protected from abuse in hospitals;
• lack of support and services in the community to protect consumers from abuse;
• carers feeing unsafe due to lack of services and support in the community; and
• safety concerns of staff.

6.2.2.1 Lack of safety in hospitals – consumers not protected from abuse

Standard 2.2 states: ‘Treatment and support offered by the MHS ensure that the consumer is protected from abuse and exploitation’. The following quotes express concern that consumers were not protected from abuse in treatment settings. This also indicates that in these particular situations, ‘policies, procedures and resources’ were not available to promote the safety of consumers (Standard 2.3) in hospital settings.

…it goes against the grain to see people being made to stay on a trolley, in a cubicle, usually sedated, occasionally mechanically restrained, just because the mental health system is overloaded and poorly resourced. This situation is chronic and untenable.

(Clinician, Victoria, Submission #201)

There is a staggering amount of sufferers of mental conditions who have been sexually abused… Some go to private therapy which they can ill afford. They are handling 2 stigmas while trying to get justice. Another problem is when hospitalised they are often put into a group situation, some patients with sexual desires often prevalent in mania can abuse unwittingly. But my concern is the lack of security in these wards, staff sit in their box while unsecured areas are unsupervised, we need more staff on the floor. Sleeping arrangements also are a worry in some hospitals I believe. Our rights are that we should feel safe, but quite often this is abused. Thank you for bearing with me.

(Consumer, Victoria, Submission #193)

I’m now treated for post-traumatic disorder and that trauma happened in hospital. Sometimes hospitals make you sick.

(Consumer, Advocate, Victoria, Melbourne Forum #14)

The lack of proactive preventative measures that exist in mental health services generally, but in particular in in-patient facilities, to ensure the safety of all patients is of major concern. Policies seem to only exist to guide staff about what to do after an event rather than before an event. It is our view that it is the right of every patient to not only be safe, but also to feel safe.

(VMIAC, Victoria, Submission #332)

I have been a patient in the mental health system for twenty years… During that time I have learnt that many people working in the system get habituated to violence. The psychiatric hospital is not safe. I have been assaulted. I have had my belongings stolen. I have been abused. I have not been protected by staff. Sometimes staff are the worst perpetrators of this violence.

(Consumer, Victoria, Submission #240)

The specialist forensic hospital is unable to offer beds to area mental health services coping with violent inpatients, leading to an increase in the level of violence and assault in the general hospital psychiatric units. The rights of the mentally ill offender to receive treatment and care for their mental illness and the rights of people in the inpatient units of general hospitals to treatment and care in a safe environment are being compromised.

(ARAFEMI Victoria, Victoria, Submission #230)

6.2.2.2 Lack of support and services in the community to protect consumers from abuse

Not only were concerns raised regarding the safety of consumers in hospital settings, but concerns were also raised with regard to consumers not being protected from abuse in the community. One clinician cited the reason for this as the failure to implement the necessary community treatment and support services, including supported accommodation post-deinstitutionalisation:

One of the problems when we moved patients from long term care into the community was that a lot of abuse has occurred because we have never had the community system built to the level it’s needed.

(Regional GP, Victoria, Morwell Forum #8)

6.2.2.3 Carers feeing unsafe due to lack of services and support

[Y] died… apparently driven to suicide after living with her husband who was diagnosed with bipolar disorder. He was often non-compliant and when not taking his medication, threatened to kill her and [their child] if she tried to leave him. She could not get adequate support from Psych services or obtain emergency housing so that she could be safe to leave.

(Anonymous, Victoria, Submission # 306)

Standard 2.3 states ‘Policies, procedures and resources are available to promote the safety of consumers, carers, staff and the community.’ The helpline dialogue described below shows how attempts to contact the police and the mental health service when a consumer repeatedly attacked his parents resulted in nothing more than the consumer being assessed and then returned to his home on the same day:

A young woman rang the Helpline I’m on, and said her 18-year-old cousin was attacking his parents every week. Each time the parents rang the Police, they came and took him to the mental health place, and brought him back and said he was fine. She felt he was in danger of murdering his parents.

(Carer, Mother, Victoria, Submission #211)

This ‘revolving door’ type of ‘care’ was commonly reported by consumers and carers alike.

I have been forced to leave my home because of his constant violent outbursts and damage to my home. I was living in fear all the time when I lived with my son. My home has had every window in it smashed and there are holes that have been punched or kicked in most of the walls. I have telephoned the C.A.T [Crisis Assessment and Treatment] team on many occasions when my son has been having an explosive outburst and at other times when he was just depressed and anxious. The C.A.T team say that they will not come and that I should call the police. The police tell me I should ring the C.A.T team!!!!

(Carer, Mother, Victoria, Submission #296)

6.2.2.4 Safety concerns of staff

One clinician also expressed concern that staff do not always feel safe when dealing with some consumers, in particular, with consumers who are using drugs. This suggests that Standard 2.3 (‘Policies, procedures and resources are available to promote the safety of consumers, carers, staff and the community’) has not been adequately met and/or that staff may have been insufficiently trained to ‘understand and appropriately and safely respond to aggressive and other difficult behaviours’ (Standard 2.4):

What we are faced with now is a cohort of people who have a mental illness and are using drugs. People – my colleagues – are frightened.

(Clinician, Victoria, Footscray Forum #5)

It is our view that there appears to be a shortage of experienced staff, which again not only impacts on the stress levels of staff, but on patients as well. It has not been uncommon for patients to express concern about the stress levels of staff. We believe patients have enough to worry about without having to be concerned about staff. On some occasions when we have mentioned these concerns to individual managers the response is often that the “staff put patients up to this.” This sort of defensive reasoning does nothing to solve the problem – it just facilitates its continuance. It also demonstrates a lack of concern about staff and / or ignorance about the problems within their organisation and their responsibility to take care of their staff and address issues of concern.

(VMIAC, Victoria, Submission #332)

Concern was also raised regarding staff bullying and the impact this has both on the wellbeing of staff and their ability to provide quality services to consumers:

There are also going concerns, and an increasing body of evidence to suggest that bullying of staff by staff (often managers but not exclusively) is very common impacting on staff wellbeing and their ability to be therapeutic with patients / clients.

(ANZCMH Nurses Victorian Branch, Victoria, Submission #316)

6.2.3 STANDARD 3: CONSUMER AND CARER PARTICIPATION

Consumers and carers are involved in the planning, implementation and evaluation of the MHS.

Even though the First National Mental Health Strategy was controversial and flawed it was very strong on consumer participation and very exciting in terms of making gutsy changes to some of the taken-for-granted assumptions of the ‘mental illness establishment’.

(Consumer, Advocate, Victoria, Submission #166)

Under this Standard, submissions and presentations indicate concerns that:

• the views of consumers and carers are not being heard’ and
• attitudes of staff and service providers are hindering participation by consumers and carers;
• insufficient resources to support consumer participation;
• the voice of consumers with Borderline Personality Disorder, in particular, are not being heard; and
• voice of adolescents with mental illness or mental health problems not heard.

6.2.3.1 Consumers and carers not being heard

Consumers and carers expressed concerns that their views are not being heard and they have no avenues to give voice to these views so that they can be heard in a meaningful way. According to Standard 3.2 ‘The MHS undertakes and supports a range of activities which maximise both consumer and care participation in the service’. Many consumers and carers feel that these activities are not being supported by the MHS:

Too many times over the years have many other people and I given information, been part of a consultation group, spoken up when asked to do so. Too many times have we been promised that something would be done? Too many times we have been let down. I am certain that somewhere in archives there is a plethora of information that has been collected and not activated on. I like many of my colleagues in the Mental Health System am sick and tired of being told that we have a voice only to find out that we have been fooled once again.

(Consumer, Victoria, Submission #112)

As a worker I have credibility, as a carer I have none.

(Carer, and Disability Accommodation Service Provider, Victoria, Melbourne Forum #9)

The consumer voice has to be heard. The discussion about having another Burdekin Enquiry is not sufficient and there is sorry business in mental health and it needs to be attended to. Apologies need to be made and there needs to be restitution in some cases. Nothing about us without us is our motto.

(Consumer, Victoria, Melbourne Forum #4)

Carers get no consideration, they really don’t.

(Carer, Victoria, Melbourne Forum #3)

Many of these volunteers report that their time on these bodies was, at best, a complete waste but, more often, that they felt cheated and ripped-off – their contributions were rarely heard and virtually never acted upon.

(Insane Australia, Victoria, Submission #232)

I implore you please do something for these suffering souls look at the state of “Mental Health” needs and talk to those who know what the needs are mostly the “Wife” “Partner” “Parents” those at the coal face not the so called experts.

(Carer, Wife, Victoria, Submission #248)

Some presentations and submissions, however, spoke of the positive impact and work which results from consumer and carer involvement in the mental health sector. The following quotes exemplify this:

The majority of the people I work with are very committed to their role and go out of their way to help.

(Consumer, Paid Consumer Consultant, Victoria, Morwell Forum #5)

I work for Latrobe Hospital as a consumer consultant. We still need assistance with care.

(Consumer, Consultant, Victoria, Morwell Forum #1)

In 1999 the Commonwealth funded a very interesting series of weekend workshops. They were attended by representatives of the umbrella organisations for each of the discipline groups that play a major role in servicing the mental health sector: mental health nurses, psychologists, psychiatrists, occupational therapists and social workers. Also invited to these workshops were a critical mass of consumers and a critical mass of carers… The most interesting thing that happened however was that as these workshops progressed this funny defensive humour was slowly replaced by the realisation that the consumer body of expertise (the lived experience of ‘mental illness’) was actually as important as each professional group’s accumulated wisdom. Many professionals who experienced these workshops tell vivid stories of how they were challenged and how they changed through the experience. Several people went back to their home cities and proceeded to initiate projects and programs, which came directly out of their learning in Canberra. Some consumers came away feeling that, at last, we were involved in a way that was not just tokenistic.

(Consumer, Advocate, Victoria, Submission #166)

A significant finding of the research project – reverberating throughout the accounts given by most informants – is that even with marked limitations in resources for consumer participation activities, a great deal of service improvement and innovation is being brought about in many local clinical mental health service systems.

(Consumer Advocate, Victoria, Submission #253)

There is considerable support and some would say a growing “critical mass” of support, commitment and goodwill toward consumer participation among many service provider managers and staff and some genuine attempts to work in partnership and collaboration with consumers – as well as some quite entrenched pockets of doubts, resistance and “hangovers” from the institutional attitudes and approaches in some areas.

(Consumer Advocate, Victoria, Submission #253)

A Ministerial Advisory Committee on Mental Health was announced in August 2004, giving consumers, carers, non-government organisations and clinical leaders input to policy decision-making at a State level.

(SANE Australia, National, Submission #302)

Carer Consultant positions are being established alongside Consumer Consultants to articulate concerns of family and other carers at an Area level.

(SANE Australia, National, Submission #302)

6.2.3.2 Attitudes of staff and service providers are hindering participation by consumers and carers

Concern was expressed that one of the main obstacles to meaningful participation by consumers and carers was the attitude of many service providers, managers and bureaucrats. For example. the Centre for Psychiatric Nursing Research and Practice suggested that “unless we mandate consumer perspective in the training and education of all mental health practitioners” this situation will not change and the rhetoric of inclusion of the consumer voice will not be translated into meaningful participation with real commitment:

While some organisations appear to be genuinely committed to consumer participation, anecdotal reports from consumer consultants and consumer representatives persistently and consistently indicate that the attitudes of many service providers, managers and bureaucrats are that consumer participation exists because it has to rather than it needs to.

(VMIAC, Victoria, Submission #332)

There is a rhetoric of inclusion of the consumer voice in mental health debates but the consumer-survivor experience of this, virtually unanimously, is that this rhetoric is lip-service not matched by any real commitment and certainly not by any meaningful resources to promote the inclusion of the consumer perspective…

(Insane Australia, Victoria, Submission #232)

Other Consumers Consultants, an apparently smaller group – who measured their situations in various different ways – said that the local Area Mental health Services where they worked remained apparently “resistant and entrenched” toward consumer perspectives, maintaining attitude barriers and “us and them” thinking, and sometimes taking a “pathologising” view of issues. A more subtle but still difficult situation was where consumers perceived that services seemed to be “saying all the right things” but were short on meaningful action – sometimes opting for quick fixes, tick-the-box checklists and “tokenistic” displays of consumer participation through Public Relations exercises, and ever more pamphlets.

(Consumer Advocate, Victoria, Submission #253)

Money alone can’t buy service improvement… service provider “attitudes” can be a make or break factor. It emerged that many of these Consumer Consultants were often more immediately concerned and affected by the many ways that the cultures and environments of mental health services could be a supporting factor for consumer participation efforts, or the source of difficult and frustrating barriers. “Attitudes” of service provider staff and managers towards consumers and receptivity to change were seen by some stakeholders as an important factor influencing outcomes. Consumer consultants spoke about a wide range of experiences at their local Area Mental health Services. (author’s emphasis)

(Consumer Advocate, Victoria, Submission #253)

All of our mental health plans support consumer participation. This is occurring in different ways, to different degrees across Australia. However, we are only just skimming the surface of what can truly be achieved unless we mandate consumer perspective in the training and education of all mental health practitioners, especially Psychiatrists and Registrars.

(Centre for Psychiatric Nursing Research and Practice, Victoria, Submission #323)

6.2.3.3 Insufficient resources to support consumer participation

Concern was also expressed that insufficient funding is also preventing genuine participation by consumers:

Consumer self advocacy groups, organisations and individuals have insufficient funding to provide the overwhelming support needs of consumers whose rights have been abused. Nor do we have funding to provide the kinds of alternative supports that we know will work for many of us. Nor do we have funding to allow us to hold forums, conferences, communicate with each other. Without funding we remain voiceless and disconnected. Without funding we cannot participate in any of the ways that our mental health policies tell us we should be participating.

(Insane Australia, Victoria, Submission #232)

The consumer movement in Australia needs to be adequately resourced to bring the genuine consumer voice into mental health policies in ways that are more than the current lip-service.

(Insane Australia, Victoria, Submission #232)

Considerable evidence emerged from the research indicating that limited resourcing is a major factor preventing many of these projects from reaching their full, (and supporters of consumer participation would argue) deserved potential. (author’s emphasis)

(Consumer Advocate, Victoria, Submission #253)

There are also widespread accounts of Consumer Consultants trying to maintain large outputs of work, within an already complex and demanding role, with limited resources, putting in large amounts of extra voluntary time, in some cases striving to personally “bridge” service gaps, and often facing costs to their own health and wellbeing.

(Consumer Advocate, Victoria, Submission #253)

6.2.3.4 Voice of consumers with Borderline Personality Disorder not heard

One consumer expressed concern that people with Borderline Personality Disorder, in particular, are not being heard at any level and therefore their needs are not being lobbied for or considered in the planning and implementation of services:

I have had an ongoing discussion with SANE about what I see as the invisibility of BPD on their website and in their publications… on the Fact Sheet for BPD there is no emphasis on distress; rather, the whole emphasis is on people learning to manage their behaviour successfully. I hate this. The behaviour is as a result of something. It doesn’t just jump out from nowhere. This is grossly unfair and judgemental.

(Consumer, Advocate, Victoria, Submission #166)

In some ways the MHCA simply reflects the political lobbying power of its constituent member organisations. Therefore, we shouldn’t be either surprised or too critical of the fact that it has thus far not engaged publicly (that I know of) in promoting issues at a national level that are of central importance to those of us who care deeply about people who have been labelled as having BPD. In many ways it is a reflection of our own incapacity to organise ourselves into a coherent public voice and demand representation on the MHCA Board.

(Consumer, Advocate, Victoria, Submission #166)

6.2.3.5 Voice of adolescents with mental illness or mental health problems not heard

A youth participation worker emphasised the importance of participation by youth in reform processes to maximise health outcomes for children and young people:

While consumer participation has fixed some of the worst bits of the adult mental health system, it is virtually non-existent in youth and adolescent services.

(Youth Participation Worker, Victoria, Submission #255)

6.2.4 STANDARD 4: PROMOTING COMMUNITY ACCEPTANCE

The MHS promotes community acceptance and the reduction of stigma for people affected by mental disorders and/or mental health problems.

Under this Standard, submissions and presentations raise concerns about:

• stigma and the need for community education;
• discrimination in employment settings;
• stigma and stereotypes perpetuated by the media;
• social isolation;
• rejection by the community;
• non-acceptance by mental health workers;
• non-acceptance by family members;
• discrimination by real estate agents;
• problems with terminology and stigma for people with Personality Disorders;
• the impact of lack of access to services on stigma; and
• stigma associated with ‘therapy’ as opposed to treatment by medication.

6.2.4.1 Stigma and the need for community education

Standard 4.1 states: ‘The MHS works collaboratively with the defined community to initiate and participate in a range of activities designed to promote acceptance of people with mental disorders and / or mental health problems by reducing stigma in the community’. Consumers expressed concerns about the high level of stigma and ostracism still being experienced by people with mental illness, to the extent that the rights and needs of the people with mental illness who are homeless or in the criminal justice system are being ignored by society. These high levels of stigma would indicate that campaigns and activities to date to address community acceptance and reduce stigma have not been able to turn community attitudes around.

As described below, a lack of community acceptance is a key barrier to people with mental illness from accessing treatment and gaining employment or having a voice and thus being able to participate socially, economically and politically in society. Without community education, not only will community acceptance and understanding not be forthcoming, but fears based on myths, stereotypes and inaccurate information will continue. This will further perpetuate stigma and discrimination and support an unwarranted call for seclusion and restraint and the curtailment of rights of people with mental illness:

But we at Insane regard this failure to resource mental health as a second-order issue. Human rights violations in mental health in Australia occur not just because of a few rotten apples in the barrel, or because of inadequate resources. Human rights violations are systemic and deeply embedded in how Australia responds to mental health. First, in the broader community, the stigma that surrounds mental health has to be seen as a deeply entrenched discrimination against madness that requires sustained, constructive measures to overcome. A clear and strong voice from consumer-survivors, in their own language, will be essential to this task. Second, within existing mental health services, this stigma and other discriminatory prejudices and practices are intrinsic to these services and central to the systemic human rights violations. Without a major overhaul of how we approach mental health, more resources will only further entrench and possibly worsen the current human rights abuses of mental health consumer and survivors. Again, the voices of consumer-survivors must be heard if these systemic human rights violations are to be addressed.

(Insane Australia, Victoria, Submission #232)

Stigma: Some people with a mental illness are not willing to engage in a psychiatric rehabilitation service because of personal and community attitudes. These services are not viewed as being attractive to potential users i.e. youth.

(Service Provider, Victoria, Submission #266)

There are those who consider that people with a mental illness do not have disabilities like others with (say) chronic physical pain, and loss of limbs, hearing, vision, speech et al. …There is still an attitude about mental illness which requires addressing, and, importantly, when considering protocols for various government programs such as SAAP [Supported Accommodation and Assistance Program].

(Anonymous, Victoria, Submission #272)

In every discussion held to date, stigma and discrimination have been raised as issues of concern. Unfortunately, the experience of stigma and discrimination is endemic, ranging from the common media portrayal of people with a psychiatric illness being violent and aggressive to discrimination in employment and even to how people are treated in mainstream medical services.

(Brotherhood of St. Laurence and Catholic Social Services Victoria, Victoria, Submission #324)

6.2.4.2 Discrimination in employment settings

Concerns were expressed about discriminatory practices in employment settings which preclude people with mental illness from participating successfully in the workplace. These included problems with disclosure, lack of support when employed and termination as a result of mental illness.

Many of these problems could be addressed by activities associated with Standard 4.2 ‘The MHS provides understandable information to mainstream workers and the defined community about mental disorders and mental health problems’. Employment and support in the workplace by managers and other employees are seen as critical in the rehabilitation phase, reducing the impact of illness in the long-term and successful reintegration into society at a social and financial level.

Employment is where many consumers feel they are particularly vulnerable to discrimination. Broader issues of employment are discussed below but it is useful to quote a young man's personal experience here to highlight how hard your work life can be if you are perceived to be different:

“I haven't disclosed anything about my illness to my employer, though I'm sure they know there is something going on. Initially, I had a shared office, which was really hard—I avoided going in to the office whenever I could (I work part time and have a fair bit of flexibility). We just didn't get on very well—but my employer was accommodating and found me another place where I could be by myself. But they have gone to the extreme—I have a whole level to myself and there is no one else around. I don't get to see anyone—it's weird but I get a sense that I'm there because they think I'm weird. Work is now very lonely”.

(BSL 2004 Focus groups with mental health consumers)

(Brotherhood of St. Laurence and Catholic Social Services Victoria , Victoria , Submission #324)

 

The majority of consumers spoken to during the consultation were not working, but many had in the past and wished to do so again in the future. They, however, acknowledged the great barriers that would have to be overcome if they were ever to achieve their aims.

“I started having problems with depression and I didn't understand that anxiety was part of it—I didn't understand how it was affecting me. It is hard to get the right help and the right medication and to keep functioning at the same time. I ended up losing 12 jobs in a row—falling in a heap and not being able to concentrate. It's like the last 20 years of my life has been just one big nightmare—I‘ve lost family, I've lost friends, I've lost property, I've lost just about everything I've owned. I've lost a lot of hope and it has taken me a long time to get that back. And I still don't know if I've got the wherewithal to work. I still have problems with concentration and memory—am I employable? And is an employer going to understand if I have a relapse? I'd like to work but I'm not sure I would trust myself or the workplace”.

“What I've found is that if your boss knows you have a mental illness he'll play on it. He thinks he is doing you a favour by hiring you and will expect you to do the things he won't ask other people—or he'll start picking on the quality of your work”.

“Do you tell people that you have a mental illness? If you tell them when you are applying for the job you won't get it. They won't say that's why they didn't give it to you though”.

(BSL 2004 Focus groups with mental health consumers)

(Brotherhood of St. Laurence and Catholic Social Services Victoria , Victoria , Submission #324)

6.2.4.3 Stigma and stereotypes perpetuated by the media

Concerns were also raised that any activities by the MHS to reduce stigma in the community must also address education of media personnel to modify their portrayal of people with mental illness and comparative references.

At a public level, the association of violence and aggression with mental illness must be challenged whenever it appears. The public must be made aware that such violence is an exception, and that people who do have a psychiatric illness are much more likely to be on the receiving end of it rather than to be the perpetrators. All people with a psychiatric illness suffer at some level by the misperception that is created by sensationalist media reporting.

(Brotherhood of St. Laurence and Catholic Social Services Victoria, Victoria, Submission #324)

6.2.4.4 Social isolation

Consumers and carers expressed concern at the increasing number of people with mental illness who, for a variety of reasons, including stigma, are isolated in the community and have no social supports:

My son is fortunate because he has me but plenty of people don’t have anyone.

(Carer, Mother and Disability Accommodation Service Provider, Victoria, Melbourne Forum #9)

I have always had access to very supportive family members who have been there for me when I needed it but a lot of people don’t have that so they have no-one or nowhere to go.

(Consumer, Paid Consumer Consultant, Victoria, Morwell Forum #5)

6.2.4.5 Feelings of isolation – rejection by the community

Empathy is a big thing – support from one human being to another human being.

(Anonymous, Victoria, Morwell Forum #19)

Consumers and carers expressed concerns about the stigma that still surrounds mental illness and how this resulted in friends and other members in the community distancing themselves from the consumer and the family. This would indicate that campaigns and activities under the National Mental Health Strategy to address community acceptance and reduce stigma to date (Standard 4.1) have not yet successfully changed community attitudes to mental illness.

Discrimination and lack of community acceptance are key barriers to people with mental illness (and their family members) being able to participate socially, economically and politically in society. Consumers and carers reported social isolation, feelings of being a burden on family and friends, and ‘living like ghosts’ and ‘dying alone’ are the result.

I think for those who are severely ill and are isolated in the community due to their illness they often have no form of support even from family or friends. For people like that they are in the community living like ghosts – they are dying alone.

(Consumer, Victoria, Footscray Forum #11)

My son had so many friends, his photo in the local paper every week, and captain of every team he was in, and as soon as the diagnosis came, he’d say “Any mail, mum?”, “Any phone calls?”, but there weren’t any.

(Carer, Mother, Victoria, Submission #211).

…a young man went off to have a cappuccino, and came back so quickly that [Y] asked him why and he told her that they’d said “Come back when there’s no one here.” That wouldn’t happen there now, as a result of the Kew Regional Outreach Ministry.

(Carer, Mother, Victoria, Submission #211)

The really sad thing is that people like my sister feel they are a burden on their families.

(Carer, Victoria, Melbourne Forum #16)

It is unfortunate that the vilification of people who have attracted a diagnosis of Borderline still seems to be OK. Much money and effort has been put into trying to de-stigmatise people with psychotic illness and depression however we see no sign of s similar campaign being organised either by governments or Non-government organisations to change the dominant and inaccurate community understanding of and betrayal of those with Borderline Personality Disorder.

(Consumers, Victoria, Submission #194)

Lack of community support and understanding.

(WIRE-Women’s Information, Victoria, Submission #182)

Out of what can be many different labels they say things like; “mention I have been diagnosed with Schizophrenia and Depression but please don’t say anything about Borderline.”

(Consumer, Advocate, Victoria, Submission #166)

You start to cry and you can’t seem to stop – you begin to question yourself and then others begin to question you, some even judge you, some start avoiding you, and some stop calling around.

(Carer, Mother, Victoria, Submission #242)

Dealing with Mental Illness you need people to care and share with you our problems and it takes patience to allow our bodies and mind to heal because it will not happen overnight.

(Consumer, Victoria, Submission #328)

6.2.4.6 Non-acceptance by mental health workers

The campaign largely fails to take up the issue of discrimination within mental health systems themselves. Consumers often report that the worst discrimination comes from inside services and is particularly targeted at people labelled as having personality disorders.

(Consumer, Advocate, Victoria, Submission #166)

Many consumers and carers also expressed concerns about the lack of acceptance and understanding and what they labelled as discriminatory attitudes shown by some service providers. This is of particular concern given that consumers must come directly into contact with mental health service providers and their views impact directly upon them and their carers:

Some services and carers are unsympathetic and unresponsive.

(Coordinator, Grampians disAbility Advocacy Association, Victoria, Submission #212)

…one member found it offensive to be told by a community nurse that "you're not mentally ill, you have a living problem"; and the solution is?

(Coordinator, Grampians disAbility Advocacy Association, Victoria, Submission #212)

Two women have come into the Fellowship and each told us that a psychologist said to their son, who’d had schizophrenia for some time, “You haven’t got schizophrenia. You’ve just got a difficult mother”.

(Carer, Mother, Victoria, Submission #211).

Borderline, on the other hand, tends to be one that people are really ashamed of and the shaming in the system that follows the diagnosis just intensifies some people’s self hate in my experience.

(Consumer, Advocate, Victoria, Submission #166)

6.2.4.7 Non-acceptance by family

As the following quotes indicate, the need for activities to promote community acceptance not only for the community but for family members is critical.

I think culture plays a big part in our society especially in terms of lack of family support due to family non-acceptance of their illness. This is certainly true for non-English speaking families. Sometimes consumers are made to feel that they are an embarrassment to their families. So they live very isolated lives. We need further education to address stigma and discrimination. We are reasonably ahead of the pack in Australia but we’ve still got a long way to go.

(Consumer, Victoria, Footscray Forum #12)

A young woman rang the Helpline and said her husband had suddenly been diagnosed with schizophrenia. His parents said to her “He was fine when you married him”. The doctors listened to them, and didn’t allow her to visit him I hospital.

(Carer, Mother, Victoria, Submission #211)

6.2.4.8 Discrimination by real estate agents

One carer described a series of negative repercussions that resulted when she disclosed to the real estate agent that her son had a mental illness, including the unnecessary involvement of the police to accompany an inspection of the premises.

…an eviction notice as he had not been paying his rent… I then contacted the rental agent from the Real Estate Agency and arranged to meet with her at my son's unit for an inspection and to arrange removal of his belongings. She arrived, followed by two police officers. There was no damage to the unit. I apologised for what had happened and was strongly rebuked by the agent for not having informed her that my son suffered from schizophrenia and added that she would have to inform all other rental agencies that he was an evictee along with my name as his next of kin. Obviously this would make acquiring further accommodation for him very difficult.

(Carer, Mother, Victoria, Submission #178)

6.2.4.9 Problems with terminology and stigma for people with Personality Disorders

Two of the submissions received strongly argued for community acceptance campaigns that include education about personality disorders. The contributors argued that unless this was addressed, commonly held myths and stereotypes about people with personality disorders will continue to significantly and negatively impact on consumers’ lives:

Outrageously, ideas about mental health literacy completely fail to even broach the issues that are central to the lives of all of us who have been crudely thrown around or out of the public system because someone has decided we just have a personality disorder (or 2 or 3).

(Consumers, Victoria, Submission #194)

…the term, personality disorder, makes people sick… personality disorder implies that a person’s problems are all that person’s fault and responsibility… some clinicians use the term personality disorder indiscriminately as short hand for everything that presents as difficult to diagnose or socially construed.

(Consumers, Victoria, Submission #194)

At the very least I think we should be letting people we have labelled in this way know something about the history of the term because without an explanation it is very easy to come to all sorts of conclusions about what it means. However, even beyond this the term is horrible.

(Consumer, Advocate, Victoria, Submission #166)

Consumers argue strongly that the best way to arrest the defamation that so often follows this label is to emphasise the very close correlation between adult experiences which get labelled Borderline Personality Disorder and childhood experiences of abuse and neglect… Others argue that that it is not useful because there are about 10% of people with this diagnosis who don’t have personal histories of abuse and/or neglect. Others argue that it needs to be placed within a spectrum of conditions that could be called ‘Trauma Spectrum Disorders’ (including Dissociative Identity Disorder (DID) and Post Traumatic Stress Disorder (PTSD).

(Consumer, Advocate, Victoria, Submission #166)

Consumers are no less influenced by the ‘mad’ / ’bad’ dichotomy as anyone else. Many consumers distance themselves from people who are labelled as having BPD because they believe that in some way collective political lobbying will put the anti-stigma message back as one important plank of the agenda has been the message that ‘madness is not badness’… Some consumers have been frightened by the way people labelled as having BPD have demonstrated their distress. Self-harm can be quite frightening for others to witness particularly if it is in an acute unit and you are already having a rotten time yourself.

(Consumer, Advocate, Victoria, Submission #166)

The most important anti-discrimination knowledge that many people who have been labelled with BPD want to get out to the public is that their so-called ‘behaviour’ comes from somewhere – it is not ‘badness’. This is particularly true for women who hurt themselves. This ‘behaviour’ is more likely to be as a result of the badness of others when they were young. Not being out there and fair dinkum about this relationship between growing up and being ‘mad’ is discrimination.

(Consumer, Advocate, Victoria, Submission #166)

6.2.4.10 Impact of lack of access to services on stigma

Many carers raised their concerns about the mode of crisis care currently in operation. The fact that consumers can only access services when they are in crisis reportedly makes it extremely difficult for consumers to be accepted into the community and to overcome the community’s stigmatising attitudes and negative perceptions about mental illness.

When my son and others like him are unwell, their behaviour is their stigmata... this policy requires them to be different enough to draw attention to themselves in a totally negative way... thus under this policy the stigma of mental illness is propagated rather than alleviated. And let us not forget that this behaviour, not chosen behaviour, but behaviour dictated by the illness, is that which can cause them to lose accommodation, employment, friends and perhaps even family, thereby having their lives fall apart time and time again.

(Carer, Mother, Victoria, Submission #178)

6.2.4.11 Stigma associated with ‘therapy’ as opposed to treatment by medication

One consumer expressed concern that not only does stigma directly associated with mental disorders and mental health problems have to be addressed, but also stigma associated with “therapy” as opposed to treatment by medication which is acceptable.

Intensive psychotherapy is extremely hard on everybody. The public image that it is somehow what privileged, overindulged, middle class women do to fill in the time needs challenging. I am very concerned that the efforts that have been made by SANE and other organisations to de-stigmatise mental illness have not even tried to do anything about de-stigmatising therapy in Australia

(Consumer, Victoria, Submission #203)

6.2.5 STANDARD 5: PRIVACY AND CONFIDENTIALITY

The MHS ensures the privacy and confidentiality of consumers and carers.

Under this Standard, submissions and presentations indicate concerns about the reluctance by services to involve carers, even when permission is given by consumers.

6.2.5.1 Reluctance of services to involve carers, even when permission is given by consumers

Many carers expressed concerns that the policies and procedures to protect the confidentiality and privacy of consumers is hampering communication between consumers, carers and clinicians in the provision of treatment and jeopardising the safety of consumers. Carers expressed feelings of frustration in some clinicians being very resistant to discussing anything with them and, in one instance, this resulted in a carer having to ‘slap the power of attorney in their hands’. These concerns would indicate that policies and procedures related to privacy and confidentiality are not being made available to consumers and carers in an understandable language and format (Standard 5.2) and that the MHS is not encouraging and providing opportunities for consumers to involve others in their care (Standard 5.3).

I have power of attorney over my wife but when I ask for information about my wife they tell me they can’t give it to me – until I slap the POA in their hands.

(Carer, Husband, Victoria, Melbourne Forum #3)

…two issues which can cause enormous problems for carers and which I believe can create the greatest divisions in understanding between mental health professionals and carers. The first is 'confidentiality'....from personal experience and anecdotally, this has proved on many occasions to have the potential to put either the carer or the person with the illness at risk - even if that risk is simply to their personal health and well being, apart from the distinct possibility of far more serious consequences. It is small wonder that carers can often feel used and abused by the mental health system - it appears that there has been little thought given to the rights of carers, or rather their lack of rights; we are expected to accept responsibility for the continuity of care without even the right to be informed of hospital discharges without the patient's consent, and with currently minimal time spent in hospital, the matter of the person with the illness being able to make such important decisions in regard to their own welfare has proven to be highly questionable.

(Carer, Mother, Victoria, Submission #178)

She had a job doing volunteer work. I thought we were doing really well but at the same time the private psychiatrist was reducing her medication. Now she’s gone again and I can’t find out where she is. Section 28 doesn’t seem to take into consideration carers at all. This illness is destroying her and destroying us. I’ve got her bills, unpaid bills and I can’t get any information from Centrelink. We don’t know whether she’s dead or alive so what do you do?

(Carer, Mother, Victoria, Melbourne Forum #7)

My daughter recently left hospital and we had no contact from the hospital to inform us that our daughter had actually been discharged. I had no idea where she was or when she had been released. The authorities had placed a community treatment order on her for the next 12 months which we thought was a good thing because at least she would get some care however the psychiatrist took her off that order after 2.5 months complaining about the level of paperwork required as part of the process.

(Carer, Mother, Victoria, Footscray Forum #10)

Even now when I can tell she isn't doing so well I am reluctant to contact her case manager (If she still has one) because I cannot be assured of confidentiality and my concerns may reach my mother. This of course causes more problems. The lack of communication between the 'services' and the families of those who are ill is deplorable. I understand about rights to privacy but surely some consultation / involvement is required - even information about how we as a family can assist. Another example of this concerned a time when Mum's medication was reduced and she subsequently relapsed… it would have been beneficial to be aware of this situation and to have been involved in helping to monitor any changes and to communicate with her doctors etc.

(Carer, Daughter, Victoria, Submission #265)

Many carers contact us at a point of desperation, when they have not been able to communicate with or be listened to by clinical and other services who regard the mentally ill person as the client whose privacy needs to be protected. Carers are very confused as to what rights they have in this situation- where they are the ones who provide the ongoing support in the community and whose lives and safety are affected by the illness and decisions made.

(Carers Victoria, Victoria, Submission #270)

6.2.6 STANDARD 6: PREVENTION AND MENTAL HEALTH PROMOTION

The MHS works with the defined community in prevention, early detection, early intervention and mental health promotion.

What is acceptable about refusing to carry out early intervention until the person is 'acutely' unwell, which leads to a very distressing forceful intervention, then having to administer extremely strong dosages of medication which induce obvious physical side effects which take months to subside? … What is acceptable about not keeping people with a mental illness as well as they can possibly be, thus reaching and maintaining their full potential within the illness?

(Carer, Mother, Victoria, Submission #178)

Under this Standard, submissions and presentations indicated concerns about the lack of prevention and early intervention strategies. In particular, people raised concerns about:

• mental health services making no attempt at early intervention and instead waiting for a crisis to occur before intervening;
• the lack of willingness by services to listen to families;
• the need for increased involvement of general practitioners;
• the importance of open discussion and acceptance;
• the need for more promotional strategies; and
• lack of rehabilitation programs.

Despite the seriousness of the disorders, there is no philosophical or legal framework supporting a more assertive or early intervention approach, nor the funding capacity to support such a model. Indeed such an endeavour is still impeded by a residual moral dimension to understanding these disorders. The clinical focus is typically on advanced phases of disorder (even in young people) where treatment can no longer be withheld, yet when it may be much less effective.

(Patrick McGorry, Professor of Psychiatry, Victoria, Submission #180)

6.2.6.1 No attempts at early intervention – wait for a crisis to occur

In our region people have the choice of living in the community and only have access to public hospitals when they become critically unwell. This leads to increased strain on family members who are coping with little support. Critical incidents can follow which feeds into community perceptions of people with a mental illness and setbacks the person with a mental illness. The alternative of earlier and timely interventions are desirable but seemingly not possible under the current funding and care model.

(Service Provider, Victoria, Submission #266)

Many carers and one academic expressed serious concerns about the lack of a preventive focus in the delivery of mental health services, despite the emphasis of such an approach in Standards 6.4 (capacity to identify and respond to the most vulnerable consumers in the community), 6.5 (capacity to identify and respond as early as possible) and 6.6 (treatment and support to occur in a community setting in preference to an institutional setting).

In particular, all mentioned how unacceptable it was, on many levels, for treatment and support services not to be provided at the earliest possible moment to prevent deteriorating illness until the consumer was at risk of harming themselves or others, and the rest of their life had also deteriorated (e.g. employment, social withdrawal), and required acute care often in restrictive settings and severe treatment regimes. Professor McGorry further stated that intervention at this point can often not reverse the damage that has been done.

Many submissions also pointed out the discriminatory aspects such approaches to mental health. They suggest that this approach would be unacceptable for the treatment of physical illness where early intervention is emphasised, demanded by the public and supported by the Health Department. The worst result of a failure to intervene early is death, as reported by one carer.

…although she was visited by Crisis Assessment Teams, she remained essentially untreated. In September 1994, she made a serious attempt to kill herself, was admitted to hospital and, finally, taken into the system. I cannot but connect [X]’s two years of untreated psychosis with her subsequent and, even at her best, permanent paranoia and eventual death [in 2002].

(Carer, Mother, Victoria, Submission #206)

Bearing in mind that to my knowledge he has twice attempted suicide, I was naturally very concerned and spoke to several people at the Mental Health Clinic on a number of occasions but was told that there was nothing that they could do until a 'crisis situation' occurred as his rights must be respected.

(Carer, Mother, Victoria, Submission #178)

Those who are conscious of the practical and economic problems in providing care to over half the population at some point and up to a quarter within a 12 month period, have argued that a diagnosis should be associated with substantial functional disability before treatment should be funded and accessed (Regier et al 1998, Spitzer et al 1998). This is superficially attractive, however it means that people are required to become functionally disabled by their symptoms before they can be offered help. Such disability is usually hard to reverse even when treatment is effective… Restricting access in this way is antithetical to preventive and early intervention approaches, would be completely unacceptable in general medical care where people with mild disorders, such as a viral illness, can gain ready access, and may prevent the most cost-effective phase of serious illness from being treated. Mild disorders should be able to access treatment of some kind for all these reasons (Kessler 2003).

(Patrick McGorry, Professor of Psychiatry, Victoria, Submission #180)

What is acceptable about condoning and ensuring the inevitable pattern of relapses resulting in lives falling apart time and time again rather than practicing early intervention?

(Carer, Mother, Victoria, Submission #178)

Regarding 'involuntary intervention'; although the Mental Health System espouses 'early intervention' and carers are encouraged to practice this, the constraints surrounding 'involuntary intervention' can make 'early intervention' impossible. From personal experience, it means that intervention will not be carried out without the consumer's consent until that person is acutely unwell and a 'crisis situation' arises. Although it will then, still be without the consumer's consent, probably even more so, and will probably mean a more forceful intervention, somehow this policy is considered more humane… As ridiculous as it sounds, it means that the behaviour of the unwell person has to disturb, alarm or frighten a member of the public enough to bring it to the attention of the police or the Mental Health Service - a carer's word that the person is at risk is not enough… and we talk about reducing the stigma of mental illness.

(Carer, Mother, Victoria, Submission #178)

On occasions when I have sought intervention before these far more damaging and sometimes dangerous 'crisis situations' occur, I have been told that my son's right to make his own decisions must be respected and that it is not appropriate for me to judge anyone else's quality of life, even if that life, (or more appropriately, existence) consists of physically hiding in darkness and isolation. To my knowledge my son has attempted suicide twice, therefore, far from being an hysterical alarmist, these are the times when I am most fearful as are many other carers when in similar situations.

(Carer, Mother, Victoria, Submission #178)

This is a plea for early intervention in mental illness and for a more compassionate and consultative, less rigid mental health service. This story concerns my daughter whom I shall call [X], who was diagnosed with schizophrenia in October 2001. I am concerned that it took so long to diagnose [X]. It took 18 months from March 2000 to October 2001, during which time she was at extreme risk, wandering around Melbourne, acutely disturbed, terrified (we later learnt), sometimes suicidal. It was also 18 months of anguish and extreme risk for her family. That trauma is still with her and with us.

(Carer, Mother, Victoria, Submission #307)

One carer described her elation at finding an organisation which specialised in the early detection and prevention of psychotic episodes only to discover that her family did not live within the catchment area of the service:

There was one meeting I attended whereat we were addressed by a guest speaker from an organisation that specialised in the early detection and prevention of psychotic episodes – they informed the meeting of the exciting programs they had in place, they spoke of the great successes they had enjoyed with their clients and families, the hope they instilled in me, will truly never be forgotten. I came home from that meeting quite elated and optimistic. The very next day I gave them a call – firstly they briefed me about their organisation and what assistance they could offer - they then asked me to answer a questionnaire over the phone to make certain that my set of circumstances fit into their selection criteria – we worked through a series of questions which I answered with baited breath, I was finally able to expel my breath with a great sigh of relief when I was informed that yes, they could help me – I recall weeping with delight. I was then asked my mailing address so as they could forward information out to me – after informing them of my mailing address and then confirming this to also be my home address – my elation was brought to a screeching halt as they spoke the words: “I am so sorry, but you will not be able to be a part of our program….” To which I replied: “excuse me, I don’t think I heard you correctly…” They then said: “I’m afraid this program is only available to the western suburbs…”

(Carer, Mother, Victoria, Submission #155)

6.2.6.2 Early intervention – families need to be heard

Carers also indicated that greater involvement of carers would assist clinicians to comprehend the mental health care needs of the consumer so that an early intervention treatment program could be discussed with the consumer and treatment and support services could be initiated.

And even when the family knows there’s something wrong, but their loved one doesn’t want to admit it, it would help if they were listened to.

(Carer, Mother, Victoria, Submission #211)

What is acceptable about a clinician making an assessment in a 15 minute appointment whilst ignoring the information of these same carers who are in the position of being far more sensitive to the signs of deterioration in the person for whom they care?

(Carer, Mother, Victoria, Submission #178)

Crisis Assessment and Treatment Services are variable in their response. Family carers seeking early intervention can find it difficult to get an assessment from the CAT service until their relative has deteriorated to a point where inpatient admission may be the only solution.

(ARAFEMI Victoria, Victoria, Submission #230)

6.2.6.3 Early intervention – involvement and role of GPs

One carer supported the recent emphasis on general practitioners becoming increasingly involved in mental health care and saw that they could play a pivotal role in early detection and early intervention programs. The carer indicated that further education of general practitioners could assist in this regard:

At the Forum in the Melbourne Town Hall on Monday, I picked up a card saying "Mental Health-GP Business", and I'd just like to be sure that GP's now can pick up mental illness symptoms in young people. When my son was suddenly diagnosed at 21 with chronic paranoid schizophrenia, which was such a shock, we heard from him later that at 15 he'd been seeing our GP, because he knew there was something wrong (he always had great insight), the Doctor felt he looked so well and fit, he sent him off.

(Carer, Mother, Victoria, Submission #211)

6.2.6.4 Early intervention - importance of open discussion and acceptance

Concerns were also expressed that one of the major obstacles to consumers seeking and obtaining appropriate and treatment at the earliest possible moment is stigma and discrimination. If consumers felt their concerns could be spoken about in an open, accepting and supportive manner, this would assist with interventions and supports being provided early.

I hadn't known that my mother's family had depression in it. When our youngest daughter came home from school at 13 and said "I felt so dreadful in school today. I never want to feel like that again", by then I knew what she was talking about. Early intervention can make such a difference.

(Carer, Victoria, Submission #211)

Sartorius (1998) argues that stigma and prejudice are the very first obstacles that must be tackled if the quality of life and of care is to improve for people with mental illness. Whether people with mental disorders get appropriate help is the end result of a series of processes… Firstly there is the issue of awareness of the problem and whether it is recognised as illness, or even as a problem… On the canvas of this background level of knowledge and probably prejudice, the person with emerging subjective or behavioural change and distress and / or disability may or may not recognise that they have a problem… It is common to feel shame, weakness, helplessness and an urge to withdraw from others, not only due to stigma, but also through the distorting effects of the change in mental state, the illness itself, on self-esteem, cognition, energy, judgement and crucially, on social relationships. What is difficult in this process is how to share distress and personal problems with strangers, such as the local GP that governments insist must be the first port of call. It requires a high level of trust, a leap of faith. This leap is frequently not taken without encouragement and “brokerage”… Shame mixed with desperation is what I have perceived in the frequent, often furtive, telephone calls I have received from mature, often successful and assertive people trying to obtain help for someone, a relative or friend, they know is unwell, or for themselves. This brokerage and advocacy is a crucial element especially when the illness itself has impaired awareness of the need for care or immobilised the person involved. What is lacking is the next step where prominent or ordinary citizens will talk openly among their friends and colleagues about the illnesses they have encountered or experienced, just as they do when someone has had an asthma attack or developed diabetes.

(Patrick McGorry, Professor of Psychiatry, Victoria, Submission #180)

6.2.6.5 More promotional strategies needed

In support of all the concerns expressed above, a consumer and consumer advocate suggested more promotional strategies, funding and resources are needed, and these need the support of the health bureaucracy.

Nothing is done for mental health. There’s a lot of apathy. Kids with cancer get on the front page of the paper and they get funding for their cause. Now I’m not saying that they are not important but I’m saying that we should get the same response for mental health but we don’t!

(Consumer Advocate, Victoria, VMIAC Consultation #2)

During mental health week we are given $15,000 from the mental health branch for this premier event. We’re facing organisational burnout trying to keep mental health week going. Bronwyn Pike now unavailable to launch mental health week.

(Consumer, Victoria, Melbourne Forum #8)

6.2.6.6 Lack of rehabilitation programs

Rehabilitation programs are a critical step for both reintegrating back into full life after a period of illness and preventing relapse for many people with mental illness. Such programs would include living skills programs, respite and social programs. Access to rehabilitation programs is covered under Standard 6.8 “The MHS ensures that the consumer has access to rehabilitation programs which aim to minimise psychiatric disability and prevent relapse’.

Concern was expressed however that Victorian mental health services place insufficient emphasis on rehabilitation programs or other programs to prevent relapse or promote recovery as no rehabilitation programs are available for consumers to access. These programs are essential to promote and protect the social and economic participation rights of consumers.

The Health System’s main approach to people with Mental Illness is to get them medicated and then very little else. There are no serious rehabilitation facilities.

(Carer, Father, Victoria, Submission #231)

6.2.7 STANDARD 7: CULTURAL AWARENESS

The MHS delivers non-discriminatory treatment and support which are sensitive to the social and cultural values of the consumer and the consumer’s family and community.

Under this Standard, submissions and presentations indicated concerns about:

• the lack of sensitivity to spiritual, religious and cultural beliefs; and
• the lack of understanding of issues associated with recent immigration.

In some cases the mismatch between bureaucratic rhetoric and the day-to-day experiences of those who use the system was marked. Yet, those working within the system argued the opposite:

The Department has been very proactive in providing services for the Indigenous people in the region.

(Clinician, Victoria, Morwell Forum #11)

6.2.7.1 Lack of sensitivity to spiritual, religious and cultural beliefs

Standard 7.3 states: ‘The MHS delivers treatment and support in a manner which is sensitive to the social and cultural beliefs, values and cultural practices of the consumer and carers’. In the notes to this Standard, this includes religious practices. One carer expressed concern that her daughter’s spiritual beliefs were ridiculed by mental health staff. Such attitudes by staff would indicate the need for further cultural awareness training.

Also it’s insulting to not believe the spirituality of the consumer. My daughter has been ridiculed about her belief in God and how prayer helps her. This occurred in our Psychiatric Hospital here in Bendigo.

(Carer, Victoria, Submission #199)

Concern was also expressed by the Victorian Branch of the Australian Nurses Federation that cultural and religious beliefs of people with mental illness are not being respected or considered in the delivery of treatment and support by mental health services:

Anecdotal evidence further suggests a disregard within the system for the cultural and religious beliefs of people in patient psychiatric settings. Such anecdotes include no attempts to meet the dietary requirements of religious and cultural groups, and a complete lack of sensitivity to exposure of parts of the body and / or nakedness.

(Australian Nursing Federation (Vic Branch), Victoria, Submission #322)

6.2.7.2 Understanding issues associated with recent immigration

Concern was also expressed that issues associated with migration and cultural difference need to be considered in the planning of treatment and support for newly arrived immigrants. Standard 7.1 states: ‘Staff of the MHS have knowledge of the social and cultural groups represented in the defined community and an understanding of those social and historical factors relevant to their current circumstances’.

Migration / cultural impact on mental health e.g. newly arrived migrant recently given birth who does not speak English and is experiencing post natal depression.

(WIRE-Women’s Information, Victoria, Submission #182)

6.2.8 STANDARD 8: INTEGRATION

The Victorian Mental Illness Awareness Council (VMIAC) submitted the following diagram to describe its concerns as to why integrated services, across the board, are not able to provide a balanced mix of seravices to ensure continuity of care and the best possible life outcomes for the consumer. VMIAC contend that impediments at each level must be addressed in order to ensure that treatment and support services are delivered at the earliest possible moment in order to promote and protect the rights of people with mental illness to participate socially and economically in society.

We (VMIAC members) feel that the following diagram highlights the main issues concerning people with a mental health problem.

(Consumer Advocate, Victoria, VMIAC Consultation #1)

6.2.8.1 Service Integration

The MHS is integrated and coordinated to provide a balanced mix of services which ensure continuity of care for the consumer.

Under this Standard, submissions and presentations indicate concerns about:

• the lack of integrated service to respond to crises;
• the shortage of mental health professionals to provide integrated care across settings;
• high staff turnover; and
• a lack of communication hindering continuity of care.

6.2.8.1.1 Lack of integrated service to respond to changing needs, including crises

One carer expressed her concern at the inability of the mental health service to respond to a crisis, and that their response was for her to call the police. According to Standard 8.1.1 ’There is an integrated MHS available to serve each defined community’. Included in the notes to this Standard is ‘crisis intervention’.

When I turn up there and they are in crisis, I call the Crisis Assessment Team and they tell me to call the police! I want to know why I’m standing there alone and nobody is coming to help me.

(Carer, Mother, Victoria, Footscray Forum #1)

The ad hoc, uncoordinated and unsatisfactory handling of her illness has rendered her 'resistant to treatment' and entrenched in her cannabis habit. The Mental Health Service seems only able to respond to crises as they arise. In effect, case management is provided by me and involves trying to encourage activities to prevent complete social withdrawal and constant drug use.

(Carer, Mother, Victoria, Submission #299)

6.2.8.1.2 Shortage of mental health professionals and lack of resources to provide integrated care across settings

This support is not being provided and has been progressively withdrawn over the last several years. The patients are constantly disappointed by the diminished level and duration of service as provided by the state funded public psychiatric system.

(GP, Victoria, Submission #123)

Concerns were also expressed with regard to the shortage of clinical staff in the sector to provide the required treatment and support when consumers were trying to access services or when clinicians were referring consumers for treatment. The shortage of psychologists and psychiatrists in the public sector was noted, as was the shortage of bulk-billing general practitioners and psychiatrists as many people can not afford to pay for treatment in the private sector.

Some of the issues that matter are poor accessibility, lack of access to private practitioners, lack of bulk-billing GPs and lack of accessibility to counselling services particularly for people with high prevalence disorders.

(NGO worker, Victoria, Morwell Forum #7)

I have had session times allocated which were constantly being changed from 1/2 hour appt that were made to a 10 min. session… When I would say “you and I both have a copy of the letter stating duration of sessions” I was told “we don’t care, we don’t have the time”?

(Consumer, Victoria, Submission #112)

Community-based services are also chronically under-funded. People seeking case management are often forced to wait for long periods before receiving assistance:

“It’s hard getting the treatment [case management] you need in the country. First we have to meet the very tight criteria and then you get put on a list and have to wait until someone else drops off and you can take the place. They don’t look at the waiting list and say ‘maybe we need another worker’”.

(BSL 2004 Focus groups with mental health consumers)
(Brotherhood of St. Laurence and Catholic Social Services Victoria, Victoria, Submission #324)

Services are very quick to try to cross consumers off their books before there is adequate proof that they are truly ‘recovered’. Carers often feel under pressure to pick up more responsibility because the services are so stretched and under pressure, especially when case managers take leave for sickness or annual leave. Other case managers then add that load to their own and spread their services even more thinly… and the carer picks up the slack!

(Peninsula Carers Council, Victoria, Submission #321)

…a very good psychiatrist in Melbourne who he has been seeing ever since – he sees him at bulk billing rates. Because he has been seeing this doctor I was told on several occasions by workers in Ballarat that [X[ was not in the system so not entitled to any help of any kind in Ballarat.

(Carers, Parents, Victoria, Submission #241)

…those severely afflicted, if receiving collaborative sympathetic counsel from skilled psychologists, who can also advise carers and families are able to achieve medication compliance and improved quality of life for loved ones. It involves giving respect to them, gaining trust and listening to their chaotic belief systems. Light in dark tunnels can be found and partnership agreements built with much improved outcomes for many. However, there are no adjunct psychology counselling systems in place to support the medical ones and at $80 plus a session for psychologists, few can dream of affording this support. Unless there is a will to include referral psychologists and funding assistance as part of the mental health system, no improvement of the current crisis situation is to be expected and the costly revolving door system grinds on.

(Anonymous, Victoria, Submission #216)

One of the things that really does worry me though is the relationship between private and public health systems in Australia. From my understanding there are almost no psychotherapists around in the public system any more. The implications of this are far reaching. It means that for people with Borderline mostly can’t get what they need and this is further accentuated by the fact that people like me need quite intense psychotherapy for several years… We need governments and bureaucracies to start facing the facts in regard to this. You are not going to get a quick fix... rhetoric of unworthiness that gets attached to those illnesses that are treated with talking therapies rather than drugs.

(Consumer, Victoria, Submission #203)

Outreach services such as ERMHA [Eastern Regions Mental Health Association] have a 12-18 month waiting pool just to be assessed, before you have to wait again for a case-worker.

(Carer, Mother, Victoria, Submission #352)

6.2.8.1.3 High staff turnover

Reports of high staff turnover were received, indicating a barrier to continuous care. According to Standard 8.1.4 ‘Opportunity exists for the rotation of staff between settings and programs within the MHS, and which maintains continuity of care for the consumer’.

The lack of consistency with being passed from one trainee doctor to another. Where we are the doctors change every three months

(Carer, Victoria, Submission #199)

The context in which patients / clients are being cared for creates some significant difficulties. The inpatient settings often run on high levels of casual nurses which has implications for the continuity of care of patients. It also becomes a stressful environment for nurses working in the area not knowing the capabilities of nurses that they are working with, and the regular nurses providing the continuity of care for increased numbers of patients / clients.

(ANZCMH Nurses Victorian Branch, Victoria, Submission #316)

Contact with Community Mental Health service is too intermittent to enable the development of trust - the entire focus is on medication. Our daughter has had more than a dozen different treating psychiatrists in the 8 years since she was diagnosed

(Carer, Mother, Victoria, Submission #299)

The treatment offered by the services does not give consumers enough time nor is the contact frequent enough. Frequent changes in case managers and doctors mean lack of continuity for consumers and carers.

(Peninsula Carers Council, Victoria, Submission #321)

6.2.8.1.4 No continuity of care – lack of communication

A concern was also expressed that important information is not being communicated between settings to ensure continuity of care. Standard 8.1.5 states: ‘The MHS has documented policies and procedures which are used to promote continuity of care across programs, sites, other services and lifespan’. According to one carer, there were problems with communication between the outreach worker, carer and the nurse and doctor at Waiora Mental Health Clinic prior to an admission in 2002.

No doctor at Waiora was told that [X] was off Clozapin. No doctor saw her until after her admission.

(Carer, Mother, Victoria, Submission #206)

Lack of communication and co-operative case management between inpatient and outpatient hospital staff can cause serious errors in treatment. At one time [X] was in hospital for 4-5 days before the inpatient staff knew what the treatment orders were!

(Carer, Mother, Victoria Submission #320)

Recommendations from service provider and users: … Clearer communication between crisis care, clinic and rehabilitation services to assist a person access to services following an acute episode.

(Service Provider, Victoria, Submission #266)

6.2.8.2 Integration within the Health System

The MHS develops and maintains links with other health service providers at local, state and national levels to ensure specialised coordinated care and promote community integration for people with mental disorders and / or mental health problems.

Under this Standard, submissions and presentations indicate concerns about:

• the neglect of the physical health of people with mental illness; and
• arrangements between psychiatrists and general practitioners in the provision of care to people with mental illness.

6.2.8.2.1 Physical health care neglected

Many reports were received about the neglect of the physical health of people with mental illness. Evidence was also presented to support concerns that people with serious mental illness have elevated death rates from all main causes of death, for example heart disease. General practitioners and carers described the difficulties they had in organising appropriate care for consumers’ physical illnesses. The lack of sufficiently trained services in hospital was also noted.

It’s really difficult to get appropriate physical care for patients with mental illness.

(Regional GP, Victoria, Morwell Forum #8)

…checking their physical health is important. I wasn’t allowed to ask any questions about my son’s physical health.

(Carer, Mother, Victoria, Submission #211)

Among a series of similar studies internationally, the crucial Duty to Care study from Western Australia (Coghlan et al 2001) showed that people with serious mental disorders, especially schizophrenia, had considerably elevated death rates from all main causes of death, with heart disease topping the list of causes ahead of suicide. Not only is the prevalence of these disorders increased, but they are diagnosed late and treated inadequately. This pattern of premature death and substandard medical care is characteristic of marginalised and disadvantaged sections of the community and demands urgent action.

(Patrick McGorry, Professor of Psychiatry, Victoria, Submission #180)

Because [X] my wife was having active mental health problems with her schizophrenia and that she was poorly controlled while under the CTO [Community Treatment Order] a decision was made not to treat her with either chemotherapy or radiation to me that is a Human Rights issue, even the HSC office told me that there are 15 to 18 other such cases in Victoria like our case.

(Carer, Husband, Victoria, Submission #179)

There’s also a real lack of sufficiently trained services in our hospitals.

(Regional GP, Victoria, Morwell Forum #8)

Access to services will also be discussed below but it seems appropriate to raise the issue of general medical treatment here. It is reported, by people who have a psychiatric illness, that it can be very difficult to have physical illness concerns taken seriously by main stream health providers—too often their concerns are dismissed as ‘just the symptoms of their mental illness’. One young woman who participated in the consultations spoke of the difficulty she had convincing her general practitioner that she was unwell—after a number of months she sought other advice and was diagnosed as having diabetes. Other consumers spoke of the difficulties they had experienced in emergency departments—as soon as doctors saw their file and read ‘mental illness’ consumers felt they were dismissed and some even reported having been sent home without speaking to a doctor. Discrimination is not something that is only experienced among the ‘uneducated’ broader community; it clearly even exists within the health and welfare community.

(Brotherhood of St. Laurence and Catholic Social Services Victoria, Victoria, Submission #324)

6.2.8.2.2 Arrangements between psychiatrists and general practitioners

In the following quotes, a psychiatrist and a general practitioner raise concerns about how both groups of service providers could work together more efficiently to ensure specialised and coordinated care for people with mental illness and mental health problems:

The attempts to shore up the interfaces between GP’s and specialist care are appropriate however most of their work is with so-called high prevalence or non-psychotic disorders, and sadly there is no longer expertise in the specialist system to help them to manage the more challenging of these disorders. In fact a team approach rather than a solo GP or even a solo private psychiatrist is needed for many of these cases.

(Patrick McGorry, Professor of Psychiatry, Victoria, Submission #180)

However, GP’s have limitations on the time they can spend with patients and the level of service that they can provide. Both of these areas are aspects of the system where GP’s need support to provide home care and follow up services to patients being treated by the GP. This area has in the past been one where local public mental health services have been utilised.

(GP, Victoria, Submission #123)

I have been advocating for improved psychiatric services in this region for 8 years now. Over 1/3 of our GPs have undertaken additional training. But there are no psychiatrists east of Dandenong! As GPs we have little to no support from the specialist sector.

(GP, Victoria, Morwell Forum #8)

If people do attend for help for anxiety disorders or depression it is usually to the GP where the response is usually to offer medication only. GP’s are generally unaware of other services that are available. People need to know the range of treatment options for their condition as one would expect with any physical illness. GP training in CBT [Cognitive Behavioural Therapy] is also useful and hopefully will mean earlier intervention for many people, however significant numbers of people with anxiety disorders and depression have complex histories and require longer and more specialised help.

(Clinical Service Provider, Victoria, Submission #268)

The Primary Mental Health Care teams that have been initiated in Victoria are an inadequate response to the problem of anxiety and depression as no direct service is provided - secondary consultation only! This is of no assistance to the community health services that are already providing counselling in these areas.

(Clinical Service Provider, Victoria, Submission #268)

One general practitioner from a rural area did comment that in that area, there was good liaison between the Division of General Practice and other services in that area. Such support would greatly assist with integrated and coordinated delivery of services. Standard 8.2.4 states ‘The MHS has formal processes to promote inter-agency collaboration.

There is good liaison between our Division of General Practice and other services.

(Regional GP, Victoria, Morwell Forum #8)

6.2.8.3 Integration with other sectors

The MHS develops and maintains links with other sectors at local, state and national levels to ensure specialised coordinated care and promote community integration for people with mental disorders and / or mental health problems.

Under this Standard, submissions and presentations indicate concerns about:

• the lack of housing options for people with mental illness and mental health problems;
• the need for a whole-of-government response for consumers and families;
• the need for a whole-of government response for youth;
• the need for services and supports for families and carers after suicide;
• police and the criminal justice system;
• Medicare rebates;
• employment;
• Centrelink support for consumers and carers;
• public transport;
• training of nurses; and
• public versus private mental health services

6.2.8.3.1 Lack of housing options for people with mental illness

A lack of available housing and accommodation options for people with mental illness was repeatedly raised as a critical gap in the process of integrating people with mental illness in the community and improved mental health (see Standard 11.4.B Supported Accommodation). The lack of available housing and accommodation options and the process of deinstitutionalisation and consequent lack of increased community services reportedly have led to an increase in the proportion of people who are homeless who have a mental illness:

Housing and homelessness are big issues affecting people with a mental illness. Recently we’ve become aware of a policy in Victoria which is in effect virtually banning people with a mental illness from getting housing.

(Consumer, Victoria, Footscray Forum #12)

There’s a high level of homelessness. People ring up and say I’ve got $35 left to last me for the week and my medications will cost me $38. I’ve got no food and I won’t get my pension until next week. What should I do? How can I survive?

(Consumer Advocate, Victoria, VMIAC Consultation #3)

Lack of access to safe, secure, and affordable housing

(WIRE-Women’s Information, Victoria, Submission #182)

There is a serious shortage of both affordable housing in Victoria, leaving many people in ‘housing stress’: their housing costs so great that they are not left with a sufficient income to meet other basic needs. People with a mental illness form a significant part of this group who struggle, and often fail, to keep a roof over their head.

(Brotherhood of St. Laurence and Catholic Social Services Victoria, Victoria, Submission #324)

Consumers interviewed in our consultation process speak of the difficulty they have in obtaining affordable housing, either in Melbourne or in rural cities and towns. Public housing waiting lists are currently measured in terms of years, not months, with some consumers being told that they are unlikely to ever obtain a public housing unit. Private rental is one of their few options, but the cost of it leaves very little income on which to survive, even in rural and regional areas. Two consumers from a town in central Victoria commented:

“After rent I've got $60 per week to live on—to pay for my food, electricity, transport, clothes—there just isn't any money to go out. The stress of living this way compounds any mental health issues you have”.

“I rent a house privately—the public housing waiting list is about 5 years—but the place isn't in very good condition. The floor sags and there is grass growing between