Disability Rights: Not for Service - Report: Part 6_2

Not for Service: Experiences of injustice and despair in mental health care in Australia

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

6.2 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)

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 the floor and walls and in the window ledges but I can't afford anything better. My kids live with me and help me with the rent -I pay $160 per week". (BSL 2004 Focus groups with mental health consumers)

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

The cost of accommodation is expensive. Governments need to provide housing from existing public housing stock to help NGOs. The recurrent costs are high for insurance premiums, training and education of staff, employment of trained staff, administrative costs in running supportive accommodation projects (utility costs, maintenance, foods, furnishings, clothing, activities, wages and allowances, tax payments et al), and there are the administration costs of the specific NGO overall in conducting all of its activities.

(Anonymous, Victoria, Submission #272)

The PDRSS Housing and Support programs have limited opportunities to offer housing due to no or very limited replacement stock through Office of Housing when clients within the housing have stabilized and do not require ongoing support

(Western Region Health Centre, Victoria, Submission #292)

Housing services use tenancy 'rules' as an avenue to evict people from housing when the issue is related to mental illness, as an easier option of relocating

(Western Region Health Centre, Victoria, Submission #292)

People on a Disability Pension for Mental Illness, are paid an allowance and left to their own devices. There isn't enough funding for supported accommodation or even subsidized housing. If you want a Minister of Housing accommodation, it's a 12-18 YEAR! wait. What are people supposed to do in the meantime?

(Carer, Mother, Victoria, Submission #352)

In the inner suburbs of Melbourne some 'unofficial' rooming houses operate, offering sub-standard accommodation to vulnerable people living with a mental illness. The BSL provides services to some consumers who do not have access to reasonable bathroom or kitchen facilities, a situation that should not continue to exist today. Without access to stable, safe and affordable housing it makes it extremely difficult to treat people for their psychiatric illness. The Victorian Homeless Strategy 2002 reported that long term housing and support for people with a mental illness drastically reduces inpatient stays (VHS 2002,p.7) - providing this housing must be a government priority.

(Brotherhood of St. Laurence and Catholic Social Services Victoria, Victoria, Submission #324)
6.2.8.3.2 Whole-of government response needed for consumers and families

Many submissions and presentations noted a lack, and expressed the need for, a whole-of-government approach to solve the complex support needs required for people with mental illness and their families and carers to live in the community in a dignified manner with the opportunity to participate socially and contribute economically. As described below, problems were reported about housing, employment, education, police and the criminal justice system. Many submissions identified that a broader governmental, societal and community approach was required:

A new system of vocational recovery programs within public sector mental health / substance use services should be developed in conjunction with the Commonwealth and the business sector.

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

In government we tend to departmentalise things and we need to realise that things overlap. If a person has a range of issues, things they need, then the police should take a leadership role. But at the same time we need to build the capacity of the community rather than simply focussing on what the police alone can achieve. I think there needs to be government departmental sub-groups which are linked across sectors - drug and alcohol, youth, housing, etc.

(Victorian Police Officer, Victoria, Footscray Forum #4)

Link between domestic violence and mental health and well-being of women e.g. anxiety, depression and suicidal behaviour linked to violence.

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

...plight of children who have one or both parents who suffer a mental illness. I would like to see more attention and assistance for these children, many of who have a very heavy load to bear, and are often quite isolated. There is great shortage of any help or accommodation for children when parents are unwell, or in hospital.

(Carer, Victoria, Submission #185)

Another thing I want to raise is the trauma and violence inflicted on carers and negotiating the systems such as Centrelink is extremely hard. This is not being recognised in the system. I have just been working with a Grandma who has been fighting for custody of her grandchild. She has no money and no support. We need a system to support these people who provide the care.

(Consumer, & Mental Illness Fellowship in Victoria, Victoria, Footscray Forum #6)

People with mental health problems and their families do not go away if the government does not provide services for them. Instead they go or are brought to other service systems. This phenomenon is most obvious as people with mental health problems are stranded in the emergency departments of hospitals. However General Practitioners, Police, Schools, the Correctional system and Community Groups all report increasing numbers of people with mental health problems they encounter who cannot get adequate assistance.

(Health and Community Services Union, Victoria, Submission #220)
6.2.8.3.3 Whole-of-government approach for youth

In particular, many submissions and presentations identified the paucity of services and integrated services to assist young people with mental illness or mental health problems as a serious concern (See Standard 11.4 Treatment and Support). Such coordinated services are seen as essential from an early intervention perspective to halt spiralling negative life consequences which result in homelessness, suicide, entry into the criminal justice system or separation from the family. The need for integration with drug and alcohol initiatives was also seen as critical:

A new model of integrated care linking adolescent and young adult psychiatry resources with substance abuse services and primary care for young people should be engineered and mainstreamed with educational, vocational, sports and leisure programs in key locations across all capital cities and regional centres.

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

Linking between hospitals and schools to improve the transition from hospital back to school is not adequate.

(Carer, Mother, Victoria Submission #320)

Concerns were also raised about the need to integrate service delivery with Child Protection Workers for the mental health needs of all children and youth they may come into contact with. Also, training for Child Protection Workers was also suggested with regard to children of parents with mental illness:

Child Protective services closed the case ... because [the father] was stable at the time. He has since stopped taking his medication and is not receiving any psychiatric supervision but Child Protective Services have no authority to act until [the child] is in immediate danger, which may be too late.

(Anonymous, Victoria, Submission # 306)

We believe there is a serious lack of skilled Child Protection Workers, especially those who deal with children who have a parent or parents with mental illness. There is an urgent need for a special unit to be set up within the Department of Human Services to provide trained workers who understand the risks and issues involved for children living with mentally ill parents and can make informed decisions.

(Anonymous, Victoria, Submission # 306)

Legislation needs to be changed to provide more protection to children requiring mentally ill parents to be regularly monitored by a psychiatrist and case manager or lose custody. Mental illness is managed, not cured. Supervision should not be voluntary when children's lives and wellbeing are at stake.

(Anonymous, Victoria, Submission # 306)
6.2.8.3.4 Police and the criminal justice system

Due to diminishing access to mental health services for consumers throughout their illness, police are increasingly being called to respond to issues relating to people with mental illness, especially in times of crisis. This places consumers at increased risk of coming into contact with the police and the distinct possibility of entering the criminal justice system.

Brotherhood of St. Laurence and Catholic Social Services Victoria expressed the view that a whole-of-government approach is needed to address to divert people with mental illness from being incarcerated. Such an approach also needs to take into account issues relating to access to care, crisis prevention and the protection of people's rights when and if they are at risk of entering the criminal justice system.

A Victorian police officer suggested that further consultation is required to more clearly define police involvement with people and acknowledge the limitations of their involvement. Additionally, involvement of police to assist with people with mental illness increases the stigma that ensues from police contact and may heighten community fears, in what should be a mental health response.

We know issues in the police force are there and I can say they are being worked through. I think many decisions the police deal with relate to Section 10 of the Victorian Mental Health Act which allows people to be transported involuntary. I believe Police polices have to reflect both city and country areas and that is what we are attempting to do. A lot of our dealings with people with mental illness are governed by the Mental Health Act. One of the difficulties with a State police force is that it's impossible to make policy that is workable for the whole state. Transportation is one issue but the use of restraints is another case in point.

(Victorian Police Officer, Victoria, Footscray Forum #4)

It is our position that all prisoners with a mental health problem have access to appropriate care and treatment. We also believe it crucial that the police and courts execute diversionary options for offenders with a mental illness, recognising that a sympathetic response is required.

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

Submissions expressed concern with the length of time it takes to get the Medicare rebate after seeing a psychiatrist in the private sector. Another submission raised concerns regarding the inability to access treatment from psychologists as their services do not come under the Medicare rebate scheme. As such, people from a low socio-economic background are disadvantaged as they can not afford to access private services and there are too few psychologists on the public sector.

...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)

It takes too long to get the Medicare rebate for a visit to a private psychiatrist ($150 fee for service, $120 rebate, but you have to wait six weeks it).

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

A general practitioner also raised concerns with regard to the length of time required to provide treatment and support to consumers with complex needs and that the Medicare Benefits Schedule rebate to consumers does not adequately recognise and reimburse practitioners for this time:

The majority of medical services provided to these patients are provided by general practitioners. The provision of these services are largely unsupported and despite recent changes in the schedule are largely under funded for the time and resources needed to manage patients with long term mental health problems.

(GP in rural Victoria, Victoria, Submission #123)
6.2.8.3.6 Employment

My son has paranoid schizophrenia. He's on new medication and he's the best he has been for 20 years. He wants to work but we can't get any help. I got on John Fay's program to discuss this and within 5 minutes the Minister was on air talking about funding.

(Carer, Mother, Ballarat, Victoria, Melbourne Forum #11)

Access to welfare, the supported wage and finding suitable employment are all critical components in the process of social inclusion and living a meaningful life with dignity in the community. However, many concerns were raised regarding difficulties with the current welfare and employment systems and models:

Workers with psychiatric disabilities have traditionally been faced with limited work options because of discrimination in the open labour market or because of a lack of meaningful employment service models.

(Disability Employment Action Centre, Victoria, Submission #209)

The exclusion of people with a disability in the Australian labourforce will increasingly become more expensive if government does not develop new employment policies that value diversity and inclusivity. The under-utilisation of people with a disability in the workforce is estimated to costing the community $18.8 billion, or $5000 for each taxpayer[1]

(Disability Employment Action Centre, Victoria, Submission #209)

The Commonwealth should be seriously committed in assisting people with psychiatric disabilities in gaining employment and as a matter of urgency should consider: (1) new employment policies for people with psychiatric disabilities; (2) alternate employment models as a way of providing more appropriate assistance and choices; and (3) new measures to increase labourforce participation.

(Disability Employment Action Centre, Victoria, Submission #209)

In the last 20 years there has been no significant development in providing employment assistance to people with a disability.

(Disability Employment Action Centre, Victoria, Submission #209)

DEAC is of the view that to increase the participation rates of people with a psychiatric disability in employment the Commonwealth should put in place the following:

1. Remove the funding cap to the disability services program to fund more places in disability employment services thus alleviating current waiting lists.
2. Research and fund alternative employment assistance models for workers with a psychiatric disability such as the Social Firm Model.
3. Increase employer incentives to hire employees with psychiatric disabilities by doubling the current employer subsidy to $2,800.
4. Review income support benefits for people with a psychiatric disability to foster a greater sense of independence. A new and more flexible income support system is needed to encourage workforce participation.
5. Reverse current Public sector employment trends for people with a disability by drafting new and effective affirmative action policies.

(Disability Employment Action Centre, Victoria, Submission #209)

Work impairment is one of the major adverse consequences of mental disorder costing more than the costs of successful treatment (Beeharry et al 2002). Thomas and Morris (2003) estimated the cost of this lost productivity to be 23 times the costs falling to the health service in the UK. In addition to "days out of role", even when depressed people are at work, their performance is reduced, and this "work cutback" or "presentism" contributes further to the "hidden" disability of mental disorders. Productivity gains following effective depression treatment far exceed direct treatment costs.

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

People with a psychiatric disability are one of the most disadvantaged groups in the labour market with an unemployment rate of 72% compared to a national rate of 5.7% (Australian Bureau of Statistics, 2001). These statistics reflect the enormous barriers people with a psychiatric disability face in gaining and keeping work. It also demonstrates that existing workplaces and employment agencies are clearly struggling to provide adequate support for this group.

(Disability Employment Action Centre, Victoria, Submission #209)

In relation to government reforms the trend data is indicating that people with mental illness are the group least likely to receive employment assistance. As a policy point in the UK and to some extent in the USA, there are incentives for employers to take on people with a mental illness. The availability of services is there for the general community. Participation in the workforce is an important part of someone's recovery. A research activity undertaken in Mount Druitt in NSW undertaken by the NSW Premier's Department found there was no ongoing support or linkages across services. This is true for most if not all places in Australia. Employment is very important for those with a psychiatric disability as it provides linkages for their health, education, housing, and more. Often, people with a mental illness can't find friends or employment or somewhere to call home. With employment comes wellness!

(Employment Service Provider, Victoria, Footscray Forum #2)

Employment programs to encourage and train people who are able and willing to work again and to educate and compensate employers willing to help.

(Carers, Parents, Victoria, Submission #241)
6.2.8.3.7 Centrelink - lack of support for consumers and carers

With limited access to mental health services, supported accommodation and access to early intervention treatment and support, the burden on families and carers to provide long-term and crisis support is immense. This often impacts on the financial income of the family by a reduced ability of carers to work. The shifting of care by governments to carers fails to recognise that carers are providing a significant cost-free service that is not being shouldered by the community.

Concerns were also raised with regard to the financial hardship experienced by carers due to the lack of services in the community to provide appropriate treatment and support to people with mental illness and / or mental health problems:

I have an 89 year old father, blind and with severe dementia, and have lost my part time job due to the amount of time I was needing to take off to tackle crises.

(Carer, Mother, Victoria, Submission #299)

Some programs require that carers pay for their own education and support. Families have in effect been told that they are part of the mental health workforce and indeed they save the federal government billions of dollars per year. Yet lack of direct funding for carers of people with a mental illness including for education programs, support services and carer consultants sends the message that carers' requirements are not valid in their own right and that it is up to them to deal with the fallout from de-institutionalisation.

(The Network for Carers Of People With A Mental Illness, Victoria, Submission #319)

As a carer, I cope reasonably well, but being retired and on a pension, our income is limited, so I work part-time. At times I am stretched mentally and physically, and often feel depressed myself.

(Carer, Husband, Victoria, Submission #247)

They pay us an inadequate amount a fortnight to do a job they know we are unqualified and ill-equipped for, when they are the ones who should be providing us with the people and services to care for our families properly.

(Carer, Mother, Victoria, Submission #352)

Concerns were also expressed about the insufficient level of financial support available for people with mental illness:

The majority of consumers with whom we have consulted have been living on the Disability Support Pension, and have spoken of the difficulties of getting through each fortnight, until the next payment. Housing costs, as discussed earlier, 'eat a large hole' into what they get, leaving little to survive. Consumers report:

"There is just not enough money to live on, so what you do is rob Peter to pay Paul. Your electricity is going to be cut off so you go into a cycle of debt -you borrow from friends and family and then you borrow from someone else to pay it back. It ends up borrowing and borrowing and borrowing, and you are a burden on the people you know and they start avoiding you because you always need something ...you start feeling like a leech. And then you don't want to be seen in the supermarket buying food because you still owe someone money. You wear out your family, you wear out your friends, and you start avoiding people and they start avoiding you. It adds to your exclusion and the other awful thing that follows quickly is that it is very hard to fight the bitterness and the resentment that you start to feel about everything".

"I'm quite lucky as my mum helps me out with money and groceries when I really need it (but it's every second week before I get my pension) -if you don't have the support of family you really are in trouble because you can't live on the Centrelink payment".

"The rental housing market has gone crazy. You get your money on pension day and go pay some bills, get some cigarettes and get some groceries -and before you know it you have no money left and end up getting food vouchers to get by".

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

Living like this is hard and would put a strain on most people's mental health and wellbeing. Unfortunately, meeting the expenses of basic necessities means that many people have no money to participate in leisure and social activities, a situation that isolates them further:

"It's awful when you look at someone else and start to resent their happiness -resent it." (BSL 2004 Focus groups with mental health consumers)

Providing people with a sufficient income to allow them to live with some dignity must be a priority in a wealthy and civilised society.

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

Another related but indirect problem with regard to access to services is transport. This concern was raised by a service provider that for many consumers, for a myriad of reasons, reliance on public transport and location of services is critical. Collaboration with local transport providers may also be an essential link to be made to enable access to services without discrimination for all consumers.

Staff and members discussed availability and cost of public transport as an issue that impedes access to services, it impacts on people already isolated in the community. Our lack of resources mean we are unable to provide transport as frequently as it requested to assist engagement into the service.

(Service Provider, Victoria, Submission #266)
6.2.8.3.9 Training of Nurses

The Centre for Psychiatric Nursing Research and Practice expressed concern regarding training of nurses and the impact this has on the capability of health services to respond to the needs of people with mental illness and mental health problems. This will also impact on the diminishing number of mental health professionals available for recruitment:

In 1993 in Victoria, the separate psychiatric nurse degree was abolished, and merged with the comprehensive nurse training degree. This has meant that the mental health component of undergraduate nurse training is as little as 3% in some courses ... This has a direct impact on the quality of care offered to consumers, and the capacity of services to meet care needs with appropriately trained staff.

(Centre for Psychiatric Nursing Research and Practice, Victoria, Submission #323)
6.2.8.3.10 Public versus private mental health services

Concern was also expressed regarding access and type of care in both the public and private sectors, affordability of care and concerns for the future:

One of the ongoing themes in the various debates that are being held about the responsibility of governments with respect to health services is the possibility that two levels of health care might evolve as a consequence of government policy. The fact is that in the mental health area, two levels of care already exist. These two levels of health care for the mentally ill overlay the existing split between the public and private provision of services.

(Anonymous, Victoria, Submission #318)

There are noticeable differences between the private and parts of the public mental health systems with respect to attitudes to treatment. Money appears to be a major driver here although workforce culture and age profiles, differing financial controls and the evolution of new patterns of illness and new opportunities for treatment all play their part. We have reached a situation in this country where the public in-patient services are geared to short term, crisis management. These services are also restricted in the sense that by the population of patients that is receives treatment is essentially made up of persons with psychotic disorders and persons who are considered to be at risk of suicide. For too many this access to specialist treatment and care is also transient and upon discharge to private GPs enter the process. Issues like bulk billing, surgery hours, GP interest, geographic location of residency etc. then take their toll.

(Anonymous, Victoria, Submission #318)

As already described, the population of in-patients in the public mental health units is essentially made up of persons with psychotic disorders. This is in marked contrast to the private clinics where sick people with the full range of mental illnesses will be receiving specialist care and treatment and this is continued after patient discharge.

(Anonymous, Victoria, Submission #318)

6.2.9 STANDARD 9: SERVICE DEVELOPMENT

The MHS is managed effectively and efficiently to facilitate the delivery of coordinated and integrated services.

I would like to finish with a quotation from a worker in the mental health field ... "We have to put a fence at the top of this cliff rather than an ambulance at the bottom".

(Carer, Mother, Victoria, Submission #178)

Under this Standard, submissions and presentations indicate concerns about:

  • the current state of mental health services in Victoria;
  • involvement of the Victorian government and health bureaucracy;
  • the lack of services;
  • quality of care;
  • staff shortages;
  • lack of funding;
  • distribution of resources;
  • the medical model;
  • education and training of mental health staff;
  • staff attitudes;
  • accountability and barriers to service reform and quality improvement; and
  • re-institutionalisation.

6.2.9.1 Concerns about the current state of mental health services in Victoria

Other endemic forces were characterised by David Goldberg under the acronym ACE. A is for austerity, meaning that reform needs money, and budgetary stasis, and even progressive budget cuts, such as we have seen in inpatient settings over the past 10 years, are unlikely to be associated with improvements for patients, especially given the massive new challenges faced by such units. C is for criticism and refers to the culture of blame, usually devolved downwards, which persecutes those at the sharp end of the problem for inevitable errors or for whistleblowing and advocacy. E is for enmity which involves the lack of collegial support and factionalism which has often been seen across services and academic units, between disciplines and even between the components of our so-called integrated mental health services. This has been augmented by the disaggregation of the public mental health system when mainstreaming occurred. We need to find ways to come back together as a functional system of care.

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

While the majority of this Report documents a variety of concerns regarding the current state of mental health services in Victoria, the following quotes also capture comparative perspectives and current perceptions:

Things are now worse than they were 12 years ago.

(Carer, Victoria, Melbourne Forum #2)

In my view the mental health system has improved markedly from 20 years ago but a lot still needs to be done.

(Anonymous, Victoria, Morwell Forum #19)

While being under-resourced, Victoria continues to provide a model for the other States and Territories. If adequate funding were in place, Victoria's mental health services could provide an international example of best practice.

(SANE Australia, National, Submission #302)

I have been a psych nurse for 22 years. I have been part of and witnessed the change from institutional care to community based care. We do the best we can with what we have. But we only achieve 60-80% of the guidelines. We sometimes feel that we are only providing band-aid therapy.

(Clinician, Victoria, Footscray Forum #5)

The State's specialist services - for example in early psychosis intervention (EPPIC), dual diagnosis (SUMMIT), borderline personality disorder (Spectrum) and forensic treatment (Forensicare) - are highly regarded in Australia and overseas.

(SANE Australia, National, Submission #302)

Is it acceptable that many of the people who were deinstitutionalised now number among the homeless and the prison population?

(Carer, Mother, Victoria, Submission #178)

When we moved patients from institutions and subsequently closed the institutions why did we not anticipate the increase in demand for short term admission and accommodation requirements? It was after all entirely predictable but there is no provision for it. There has been little or no realistic attempt to correct the lowering in the levels of acute beds across the state. In Victoria we not only closed the institutions but also substantially reduced the number of beds available for short term and acute admissions. (author's emphasis)

(GP in rural Victoria, Victoria, Submission #123)

A couple of days after he was admitted, when I rang, a doctor told me that my son would be discharged in a weeks time. I expressed surprise that he could possibly be well enough by then. She suggested that perhaps I should have a meeting with the head psychiatrist at the hospital and her to discuss the matter. I readily agreed. Prior to the meeting I gave a lot of thought to the pattern of the previous ten years ... lack of consultation about treatment plans or changes to treatment plans resulting in persistent relapses, not being given information and not having my information or concerns heeded, the Mental Health System not accepting the responsibility of maintaining my son's 'wellness' and then repeatedly expecting me to accept the responsibility for his care and rehabilitation.

(Carer, Mother, Victoria, Submission #178)

Since de-institutionalisation carers have born the brunt, along with our seriously ill family members, of serious under funding of Mental Health services, particularly well integrated community supports. 'Out of hospital, out of mind' still resonates in Victoria.

(Carer, Mother, Victoria, Submission #299)

The mental health system is in crisis. There is a shortage of psychiatric nurses because they are overworked and under resourced. There are not enough available beds in psychiatric hospitals, particularly in country areas.

(Anonymous, Victoria, Submission # 306)

There are increasing numbers of people in the community living with mental illness, accessing under-resourced services and facilities. This in itself is an abuse of human rights when we consider that Australia has a universal healthcare system, which is supposed to guarantee healthcare to all those in need. Yet we continually hear stories of people requiring assistance remaining untreated, or under-treated through lack of resources, or inadequate mental health training of medical and healthcare professionals.

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

The Burdekin Report uncovered a great deal in terms of issues and recommendations, but more needs to be done. Unless steps are taken now to adequately investigate the true state of mental health care in Australia via both a HREOC investigate and a Senate Standing Committee Inquiry, the situation will get much worse before it gets better, and it will be predominantly consumers who will suffer the consequences.

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

Despite welcoming the policy efforts and designated funding commitment of both state and federal governments, consumer agencies and community organisations are critical of their performance. It is argued that the failure of government to adequately resource its policy initiatives has lead to a chronic deterioration of care and support for mental health consumers. There is significant concern that because of the inability of services to provide preventative care this leads to delays and neglect in treatment, some of which creates irreversible damage in the mental health status of consumers. It also leads to an increased demand on an already overstretched mental health system.

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

The politicians need to pull their fingers out & recognise Mental Illness for what it is and meet the people's needs. We are Desperate!

(Carer, Mother, Victoria, Submission #352)

Victoria, at one stage, was arguably amongst the leading States in Australia in regard to the delivery of mental health services. However, in recent years, a mounting groundswell of community concern has led many to question this notion. Issues of ease of access to services, especially in crisis situations, overloaded case management systems and insufficient acute beds are all now widely recognised problems. Demand for mental health services is growing exponentially and service provision is not keeping up. Not only is this leading to people 'missing out' on help when they need it but those who have engaged the system are not getting the level of help they need. The 'right to treatment' is effectively not always available.

(Health and Community Services Union, Victoria, Submission #220)

6.2.9.2 Involvement of the Victorian Government and health bureaucracy

Certainly its segregation from mainstream health care continues to perpetuate the stigmatisation of mental illness.

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

Concerns were also expressed regarding the impact of initiatives and direction from the Victorian Government on the delivery of mental health services. Specifically, concerns were expressed that the reform process has stagnated, consumers have ceased to be the focus of service delivery and much energy is expended in protecting the government. These concerns indicate that many processes which exist or were in the process of implementation which could assist with the protection and promotion of the rights of people with mental illness are at risk of being abandoned.

Due to the lack of continuing reform momentum, the new model has become steadily institutionalised with patchy leadership and poor morale, and consequently non-consumer focused work practices.

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

In the Office of the Chief Psychiatrist they are there to protect the Minister - not the consumer. They can never carry out their job in the manner in which they should when there is no separation from government.

(Consumer Advocate, Victoria, VMIAC Consultation #12)

It's all about protecting the government. The patient is not the focus.

(Consumer Advocate, Victoria, Victoria, VMIAC Consultation #17)

I watched Minister Pike on TV reading off an idiot sheet but she didn't know what she was talking about. She needs to get into the system to find out herself what's happening.

(Carer, Victoria, Melbourne Forum #3)

Workforce review program was to be put out to the public by September last year but it's still not released.

(Anonymous, Victoria, Morwell Forum #19)

Auditor General's report was blown out of the water but I was working in the AG's office and it was valid.

(Victoria, Melbourne Forum #10)

6.2.9.3 Lack of services

The lack of services, both in the community and to acute care services in hospitals across Victoria, was reported extensively in most submissions and at the community consultations. As discussed in more detail later in this report (particularly Standard 11.4, Treatment and Support), the lack of services to deliver treatment and support from the early intervention phase to recovery and rehabilitation for many mental health disorders and problems, across the life span and across Victoria, impeded the delivery of coordinated and integrated mental health services to consumers and their families and carers. This would suggest that planning is not occurring 'through a process of consultation with staff, consumers, carers, other appropriate service providers and the defined community' (Standard 9.8) and that resources are not being allocated 'in a manner which follow the consumer and allows the MHS to respond promptly to the changing needs of the defined community' (Standard 9.15).

Only a fraction even of the most seriously mentally ill can gain secure tenure in this system. So even with a system heavily targeted to chronic schizophrenia, only a minority even of these cases gain appropriate coverage. The rest are referred back to unsupported GP's after the latest patch-up job otherwise called "episode of care".

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

Lack of appropriate, affordable support services eg: counselling and after hours support (has resulted in pressure on after hours telephone services)

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

Psych disability rehab support sector - our services are funded to provide support to a group of people - the demands on our services always exceed the target but in the past we have worked hard to deliver as much as we can. We have continually raised this with Mental Health branch as a problem that needs addressing but we've had no success.

(Psychiatric Disability Rehabilitation Support Worker, Victoria, Morwell Forum #4)

We don't have a funded consultation liaison service for patients with comorbid drug and alcohol and mental health services.

(Psychiatrist and Clinical Director, Victoria, Morwell Forum #18)

As the mental health system seems to operate in a state of 'overload' many agencies find themselves acting as substitute mental health service providers, without the necessary skills and knowledge.

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

6.2.9.4 Quality of care

Associated with the concerns expressed regarding the lack of services, staff and funding, were reports regarding the quality of services received from those services which are operating:

There is an increasing number of people accessing mental health services which dilutes the quality of existing services - so with the quality of existing services being poor already you can see we are heading for a disaster.

(Psychiatric Disability Rehabilitation Support Worker, Victoria, Morwell Forum #4)

Quality of care is highly variable and well below what is achievable for a nation like Australia. There is a massive efficacy-effectiveness gap (EEG), that is the real world outcomes of intervention are much worse than can be achieved under optimal conditions. This EEG is almost certainly a more serious problem for mental disorders than physical illnesses.

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

People are unhappy with the level of service received;

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

The new inpatient units are under severe pressure. They have to manage those acute patients who cannot be treated intensively in the community and such patients uniformly need highly intensive care. This work is highly challenging yet receives insufficient recognition and resources. The clinical leadership, morale, nursing numbers and skill levels, and the specific environmental conditions required for this challenge have fallen well short. Smaller units of 8 -12 beds as found in Scandinavia, seen here as uneconomic, are urgently required, together with much greater capacity for 1:1 nursing. This can be achieved by subdividing wards into functional subunits, though few have been designed this way.

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

It is true also to say that mental health services may find themselves often preoccupied with coping with day-to-day crises of an overloaded service system faced with burgeoning demands for services and limitations on resources.

(Consumer Advocate, Victoria, Submission #253)

6.2.9.5 Staff shortage

Associated with the lack of services are reports of an excessive demand for the services that exist, and reports that these services often had difficulties recruiting and retaining staff.

...the large turn over of staff in the services, which is no doubt due to the enormous pressure placed on them due to staff shortages. This lack of staffing continuity is quite serious, not only for the carer, but all members of the treatment team.

(Carer, Victoria, Submission #185)

The case loads for staff are very high.

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

...concerns about caseworkers going on leave and no-one being there for the consumer during that period.

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

There's a real shortage of mental health nurses worldwide not just here in Australia and our average age is 42-45.

(Clinician, Victoria, Footscray Forum #5)

But we need to acknowledge that there is a world wide shortage of psychiatrists - Gippsland has managed to solve that to some extent - now we have 10 public psychs so it is improving.

(Psychiatrist and Clinical Director, Victoria, Morwell Forum #18)

I also receive a lot of comments about the cultural and language barriers of the Drs that come to this area. Many of the consumers have great difficulty understanding the heavy accents of Doctors from other countries - but they are the doctors we get in this rural area so there's not much we can do about it!

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

Trained staff - unfortunately there are too few trained psych nurses.

(Psychiatrist and Clinical Director, Victoria, Morwell Forum #18)

Public mental health services for in-patients operate exclusively on a crisis- management basis. This fact is contributing to very high levels of staff burn out, low levels of job satisfaction and an inability of public mental health services to attract young nurses. These services are chronically under-funded and the experiences of many medical staff, who spend time in the public system gaining training to become qualified psychiatrists, drives them into private practice as soon as they gain accreditation.

(Anonymous, Victoria, Submission #318)

A system that gives incentives to psychiatrists to move to country areas. At present we believe there are too many whose command of English is such that it is difficult for sufferers and carers, and I am sure a source of frustration for the doctors themselves

(Carers, Parents, Victoria, Submission #241)

6.2.9.6 Lack of funding

Associated with the complaints of lack of available resources to deliver quality mental health services are requests and demands that the level and control of funding needs to change in order that appropriate services are delivered and the rights of people with mental illness are protected. Funding issues were raised both with regard to Federal and State Government contributions to the health budget and the provision of support services for people with mental illness and their families and carers:

The level of services to the mentally ill in Australia has decreased since they were moved into the community. This is not because the model is wrong but because the level and control of the funding for these services is inadequate. This will be the case until we establish single source funding with the associated single source responsibility for the funding of these essential services. As a service provider the errors in the system are clear and obvious and considerable effort and clear thinking will be needed to reverse them. This is our challenge into the future and it will only be met with constant and public scrutiny of the system responsible for their care. (author's emphasis)

(GP in rural Victoria, Victoria, Submission #123)

Victoria provides dramatic proof that having a good model, good intentions and committed, innovative health professionals is still not enough to provide adequate mental health services .... if there is insufficient funding to implement services properly.

(SANE Australia, National, Submission #302)

Andrews has attempted to calculate how much of the burden associated with psychiatric disorders is avertable with modern evidence-based treatments (Andrews 2000). While it seems clear he has underestimated this for schizophrenia (Goldberg 2003, Warner 2003), his general conclusions seem to be that much of this burden, up to 40% on average across a range of disorders is potentially avertable. If evidence based treatment were made available and coverage were increased we could avert nearly 30% of the burden in contrast to the present 13%. Andrews had originally argued that greater efficiency should be the priority so as to allow greater coverage. He now appears to concede that it would be more feasible for greater efficiency (i.e. a narrowing of the EEG [Efficacy-Effectiveness Gap]) to be pursued in parallel with greater coverage, which will inevitably require an increase in resources. It actually costs more money to reduce the EEG as well as to provide services to more people. Squeezing an already fragile and pressured system harder to try to achieve these goals is already proving counter-productive.

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

The difference for the MH services we cover the whole of Gippsland. The resources are structured differently to physical health services. The way funds are given is on a program basis and we have to account for those funds.

(Psychiatrist and Clinical Director, Victoria, Morwell Forum #13)

The Federal Government has put in over a $1million into the system but the Sate Government has effectively reduced its funding by $1.2m. We do all this work, we go to Canberra and get the money, we fight for reform and in the end we get nowhere.

(Regional GP, Victoria, Morwell Forum #8)

However the funding split between hospital and community care is essentially a state/federal one and it has proved difficult to grow the state-funded community-continuing care sector outside of acute phase care. Hence the repeated call for more beds (more clearly a State responsibility) rather than more community care, which is actually the main deficiency. Finally the modus operandi of most continuing care teams is office-based rather than mobile assertive outreach. This is a further weakness in the model which inflates the apparent need for beds.

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

Australian Federal and State Governments are turning their backs on severe mental illness support systems. It is time to catch up with other civilised countries such as New Zealand which provides double the budget per capita on mental health and psycho social support.

(Anonymous, Victoria, Submission #216)

I came from New Zealand and I don't think our system here is that different. Like all mental health services it is under-resourced so the way funding is distributed is a problem. Compared to the rest of the health system in mental health we miss out.

(Psychiatrist and Clinical Director, Victoria, Morwell Forum #18)

...reform needs money ... budgetary stasis, and even progressive budget cuts, such as we have seen in inpatient settings over the past 10 years, are unlikely to be associated with improvements for patients, especially given the massive new challenges faced by such units.

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

Further allied health resources should be allocated directly to a range of primary care settings via the Medicare scheme.

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

Serious incentives should be created for psychiatrists to work more closely with primary care.

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

...(people making decisions about the distribution of resources) need to ask challenging questions such as 'serious to whom?' and 'serious through whose eyes?'

(Consumers, Victoria, Submission #194)

There is increased funding for GPs to provide care for those people with high prevalence disorders but we have a huge problem treating people with serious mental illnesses.

(GP, Victoria, Morwell Forum #8)

As someone who has a mental illness, I generally feel abandoned and thrown to the waste dump by the government, who refuses to commit more funding to mental health care.

(Consumer, Victoria, Submission #84)

There needs to be recognition of true need in the community. Currently, one in five Australians experiences a mental illness, but only 7% of the health budget goes to mental health. There is therefore a 13% gap in terms of actual need, and funding provision. Australia has not kept abreast of other comparable developed nations when it comes to expenditure on mental health - we spend half that of some other nations in percentage / per capita terms.

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

Support for mental health services has genuinely increased in recent years, but so has demand. In the period 1997-2001, for example, the number of consumers registered with mental health services increased by 20%, and there is no reason to think this trend has decreased. Promotion and prevention strategies and improved liaison with primary care and non-government agencies mean that unmet need translates into demand and increased pressure on services. In other words, people affected by mental illness are being diagnosed and referred to services more effectively. The net effect of increased funding, therefore, may be that things do not improve but remain the same rather than worsen ... or worsen at a slower rate than otherwise. Some Areas are also far better funded than others for historical reasons and this needs to be addressed.

(SANE Australia, National, Submission #302)

I would also like to remind the HREOC and the MHCA of the pitiful government funding that is still deemed acceptable for services in the Alcohol and Drug sector.

(Clinical Service Provider, Victoria, Submission #268)

Both State and Federal Governments put considerable energy into devising lengthy and detailed mental health plans. Of what use are they if there is no funding with which to implement their recommendations? Human rights are not adequately addressed in these plans; there is no detailed documentation on accountability measures where rights are not upheld.

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

Real monetary investment is needed to support our mental health services. Without this support, consumer's experiences of trying to access services will remain problematic. There is a real need to increase funding so as to ensure timely and appropriate responses within the mental health system.

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

6.2.9.7 Distribution of resources

You can't get care in the country. I travel 3.5 hours from the country to here (Melbourne) because I can get care here. I can't get care in the country but now I can't work because I need to travel down to here for care.

(Consumer Advocate, Victoria, VMIAC Consultation #8)

Professor McGorry also expressed concern regarding the distribution of resources across metropolitan, rural and regional areas and access to services by people from low socioeconomic background or who live in disadvantaged areas.

Secondly in Australia, and notably in Melbourne, the distribution of public mental health services, private psychiatrists and high levels of quality primary care, is almost the direct inverse of the need for care. The affluent inner city areas have high levels of services of all kinds, while the growing or deprived outer suburban regions have minimal resources with inevitable consequences. The funding model was never valid and is now obsolete as well.

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

Thirdly, while this may be true to an extent in general healthcare, in psychiatry it is even more discriminatory than is realised. This is because services are tightly catchmented. So you cannot "shop around" either for acute care or for aftercare in the public sector. In effect you can be marooned in your own underresourced outer metropolitan or rural sector, where there are few if any private sector options. It is possible for people to move beyond these catchments for private psychiatric care, for example by visiting a private psychiatrist in another part of the city. However apart from the geographical barriers, there are large cost barriers for disadvantaged people here since most private psychiatrists, like all specialists, now charge well above the scheduled fee and rarely bulk bill. As a result rates of treatment for high prevalence disorders are almost certainly much lower in disadvantaged areas. This scenario, which would pertain across most regions of Australia, has not been honestly acknowledged by health planners.

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

The funding for public mental health services in rural regions is generally well under that needed to account for the additional costs in operating a service in a widespread and distant region. This means that the face top face service provision is limited. Some services attempt to correct this deficit with the provision of substandard and poor quality video or telephone consultations. While these are far better than no choice they are very much a second rate service that would not be tolerated by our city patients. The new Medicare item numbers for this service are complex to administer and difficult to access they take little or no account of line costs for the provision of the service and do not cover the costs of the enforced one in four face to face visits.

(GP in rural Victoria, Victoria, Submission #123)

Concern was also expressed about the level of funding allocated to the poorly-resourced NGO sector, especially in rural and regional areas:

Funding to community-based mental health services is also inadequate, with rural and regional consumers being particularly disadvantaged.

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

6.2.9.8 The medical model is a problem

Concerns were also expressed regarding the use of the medical model as the basis for the planning and delivery of treatment and support services and that this model was impeding the protection of the rights of people with mental illness.

The excessive medicalisation of mental health is a human rights issue.

(Consumer, Victoria, Melbourne Forum #4)

We have a medical model that contributes to people's deaths.

(Consumer Advocate, Victoria, VMIAC Consultation #16)

The adult system remains predominantly an acute care model for people with chronic psychotic illness, translocated from the "bins" to the general hospital system. A hidden expectation of mainstreaming is that outside of acute care that the same arrangements as for other medical disorders should apply, namely GP follow up. There is no research evidence whatsoever for the effectiveness of this model in psychiatry, hence it is a default model and in no way evidence-based.

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

I am writing to say how difficult it is as a carer to source appropriate and continuous support mechanisms within the public health system for the recovery of a mentally ill patient. That is to say that the medical and psychosocial models have to operate in parallel, not serially, and that the psychosocial rehabilitation infrastructure has to offer a level of service which provides continuity so that planned rehabilitation activities can be sustained instead of a scattergun approach.

(Carer (mother), Victoria, Submission #280)

...the forensic mental health system ... the tragic outcomes of cases that perhaps could have been avoided had more services been involved at an earlier stage to better manage their mental illness and provide support to families. The cost to the community is far greater in the long run if adequate resources are not available when needed most.

(Anonymous, Victoria, Submission # 306)

6.2.9.9 Education and training

Standard 9.17 states: 'The MHS regularly identifies training and development needs of its staff' (for example with reference to industry-validated core competencies for mental health staff) and Standard 9.18 states 'The MHS ensures that staff participate in education and professional development programs'. Reports were received concerning the number of trained mental health nurses available and the type of training being received by mental health nurses. The increase in training being received by general practitioners was noted:

In particular, I believe that the education and training needs of triage nurses have been entirely neglected, and given that these practitioners comprise 79% of the MH triage workforce this seems a gross oversight. In order to create quality service provision, specific, high quality education and support must be directed towards triage practitioners.

(Anonymous, Victoria, Submission #174)

The nurses really need educating - we've written letters to the Commissioner and the Chief Psychiatrist but we got no answer.

(Carer, Victoria, Melbourne Forum #3)

The number of trained staff is also a big problem for us in this region - unfortunately there are too few trained psych nurses.

(Psychiatrist and Clinical Director, Victoria, Morwell Forum #18)

The situation with regards to training of mental health nurses is also of grave concern. ... There are too few new and younger graduates coming through the generic nursing degree streams, who either interested in, or have enough training for mental health nursing. As the population of mental health clients seems to be escalating, concurrently the population of trained and experienced staff to deal with them seems to be falling. If this situation continues the welfare of patients will be at risk and consequently, the community also.

(Clinician, Victoria, Submission #201)

A nurse especially should have an intimate understanding of how the patient is feeling but this doesn't happen anymore.

(Consumer Advocate, Victoria, Victoria, VMIAC Consultation #17)

People have left the MH service and people have lost confidence. I think they're in danger of real problems because they are not getting care. Some of the problems can be a personality clash between some of the staff and some consumers.

(Anonymous, Victoria, Morwell Forum #3)

People with serious mental illness don't feel they are being understood by providers.

(Anonymous, Victoria, Morwell Forum #3)

Is it acceptable that the 'Carer Perspective' is not, in general, included in the training of all Mental Health professionals?

(Carer, Mother, Victoria, Submission #178)

GPs are now getting much more training so that's been helpful.

(NGO worker, Victoria, Morwell Forum #7)

6.2.9.10 Staff attitudes

Similarly, concerns were expressed about poor staff attitudes towards consumers indicating that staff were in need of training in order to change their attitudes and behaviours (decrease discrimination) and be more supportive when dealing with people with a mental illness:

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)

Psych services wipe you off the books when they feel like it

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

I have experienced and heard of far worse, but it does raise issues of entrenched attitudes, lack of understanding and on occasions, even arrogance, whilst at the same time, in fairness, acknowledging the fact that there are some enlightened 'carer sensitive' clinicians within the system.

(Carer, Mother, Victoria, Submission #178)

I have been told by a CAT [Crisis Assessment and Treatment] team member on Triage duty at Public hospital ER (within the last few years time, date, name, recorded) "go out and see if the moon is up will you" As far as I am aware he is still working in the same position and nothing was done.

(Consumer, Victoria, Submission #112)

WE SEE AS UNACCEPTABLE: Indifferent attitudes of psychiatrists / lack of sensitivity of staff / lack of skilled people in the profession / general lack of knowledge. (author's emphasis)

(Carer, Husband, Victoria, Submission #247)

It has been the experience of the VMIAC that more often than not, if you ask consumers if they could wave a magic wand and change something about the mental health system what would they change? The attitude of health professionals is the most frequent answer followed by access to services.

(VMIAC, Victoria, Submission #332)

Better training for people working in mental health so there is not the "patronising put down" attitude that I have witnessed

(Carers, Parents, Victoria, Submission #241)

An inclusive attitude for carers and families - where they are listened to and really heard and consulted more closely

(Carers, Parents, Victoria, Submission #241)

The following quote by Professor McGorry provides some explanation as to the reasons for the concerns expressed above by consumers and carers. Lack of resources, high demand and overstretched staff would also contribute to low service morale and impact on attitudes and behaviour of staff towards consumers and their carers and families.

A related point is the level of negative emotion that clinicians are exposed to on a daily basis. Once again this contrasts greatly with other health care settings. The patients can in no way be blamed for this, however the effects of this in services on morale have been underestimated. This is partly responsible for the perceived endemic lack of warmth and flexibility frequently highlighted by consumers and their families in clinical settings. Many staff become detached and burned out. This is not their fault and yet these effects are by no means inevitable.

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

Nonetheless, it could be argued that an appropriate increase in resources to the mental health sector could indeed overcome many of the problems outlined by Professor McGorry.

6.2.9.11 Accountability and barriers to service reform and quality improvement - protection of government and administrators and staff fears of negative repercussions for comments on service delivery

Concern was expressed that a culture exists at government and administration levels that impedes the identification of systemic or individual problems to be addressed to improve service delivery and promote and protect the rights of people with mental illness:

It is unfortunate but a culture exists which places the protection of government, Ministers, bureaucrats, organisations, managements, clinicians, and service providers above the protection of patients, in particular those with a mental illness.

(VMIAC, Victoria, Submission #332)

HACSU members, although acutely aware of the issues, are often unable to articulate the problems they confront on a daily basis as they attempt to provide mental health services. Government policy, conditions of employment and fear of negative repercussions often prevent workers speaking publicly about the difficulties they face.

(Health and Community Services Union, Victoria, Submission #220)

6.2.9.12 Re-institutionalisation

Concern was also expressed that the lack of treatment and support services, focus on acute care and rising rate of people with mental illness in the criminal justice system is effectively "re-institutionalising" people with mental illness.

As each institution has been able to be closed, it has also been able to be sold off with the realisation of tens of millions of dollars. Instead of this money being directed to provide appropriate facilities within communities, it has been re-directed away from the mental health system. Governments have been able to away with this because they have been able to exploit the generosity, good will and emotions of families and carers who are close to each person suffering chronic mental illness. A consequence of this chain of events has been the emergence of new forms of incarceration, particularly for persons without family or carer support. These new institutions take the form of prisons, rooming houses, squats, parks and large drains.

(Anonymous, Victoria, Submission #318)

6.2.10 STANDARD 10: DOCUMENTATION

Clinical activities and service development activities are documented to assist in the delivery of care and in the management of services.

In one instance, a patient was on 15-minute sightings, which were noted in the file from 0900 to 1050. The problem was that the patient jumped in front of a train at 0910. No accountability occurred or fault was found. The parents were devastated especially after the police contacted them, they phoned the hospital and were told he was okay when in fact he was dead.

(VMIAC, Victoria, Submission #332)

Under this Standard, submissions and presentations indicate concerns about:

  • the lack of communication between services and programs to ensure continuity of care;
  • the lack of comprehensiveness of documentation;
  • problems with the management of documentation; and
  • the documentation system not being accessible.

6.2.10.1 Lack of communication between services and programs to ensure continuity of care

Standard 10.2 states: 'Treatment and support provided by the MS are recorded in an individual clinical record which is accessible throughout the components of the MHS' and Standard 10.4 states 'A system exists by which the MHS uses the individual record to promote continuity of care across settings, programs and time'. Reports were received that systems were not allowing for documentation to be accessed across settings thus impeding the delivery of coordinated and integrated treatment and support:

My wife is ill. The biggest problem in hospitals is communication. Once, when taken in by an ambulance, she was sent home. It happened within the last couple of months.

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

The after hours psych services number in this region is switched through to a town 100km away, and then the consumer's issue is not referred back to the local nurses;

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

6.2.10.2 Documentation is not comprehensive

Standard 10.5 states: 'Documentation is a comprehensive, factual and sequential record of the consumer's condition and the treatment and support offered' and Standard 10.6 states 'Each consumer has an individual care plan within their individual clinical record which documents the consumer's relevant history, assessment, investigations, diagnosis, treatment and support services required, other service providers, progress, follow-up details and outcomes'. Concerns however were expressed that documentation was not comprehensive

There is no evidence from the file that the mother's concerns were conveyed to the inpatient consultant or registrar. (In the 'Root Cause Analysis, a document required by the Department of Human Services after the death of a patient)

(Carer, Mother, Victoria, Submission #206)

...I estimate ... that about half the day shifts passed without attempts at engagement with [X] being made, or recorded.

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

6.2.10.3 Problems with the management of documentation

Concerns were also expressed indicating that decisions were being made that were not consistent with care plans and that the excessive amount of paperwork required of providers often resulted in a good care plan being abandoned:

Psych services wipe you off the books when they feel like it

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

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)

6.2.10.4 Documentation system is not accessible

Concern was expressed by one consumer that the documentation system is often not accessible and clinical records can not be retrieved to assist with continuity of care. Standard 10.2 states: 'Treatment and support provided by the MHS are recorded in an individual clinical record which is accessible throughout the components of the MHS'.

In the past I have gone to see CAT [Crisis Assessment and Triage] team Triage in hospital ER room where my file has not been available, when I know that this particular hospital Mental Health Triage was set up with access to a key in the ER to make files available as people are seen in crisis there.

(Consumer, Victoria, Submission #112)

6.2.11 STANDARD 11: DELIVERY OF CARE

Principles guiding the delivery of care: The care, treatment and support delivered by the mental health service is guided by: choice; social, cultural and developmental context; continuous and coordinated care; comprehensive care; individual care; least restriction.

I am concerned that I, who see my role as my daughter's protector and nurturer, had to call the police on my daughter, because she could not be treated by the mental health system. I am concerned that the Eastern Area Mental Health Service was totally inadequate in dealing with the situation and left the police and emergency services and casualty departments to deal with a mental health problem. I am amazed at the amount and cost of public resources that were consumer in 'managing' her behaviour while she was untreated - police, ambulances, lawyers, courts, accident and emergency rooms. You can add to this the resources used in supporting her family - private counselling, Victims of Crime, the court system. This is in stark contrast to the negligible resources used in addressing the situation and in treating her.

(Carer, Mother, Victoria, Submission #307)

Under this global Standard outlining the principles underlying care, submissions and presentations indicate concerns about:

  • the lack of individual, continuous and coordinated care;
  • lack of comprehensive care;
  • restrictive approaches in the least empowering settings;
  • lack of choice; and
  • lack of individualised care.

Below are selected examples of concerns against the principles guiding the delivery of care.

6.2.11.1 Lack of individual, continuous and coordinated care

Concerns from consumer advocates indicate that treatment and support are not devised on an individual basis or provided in a continuous or coordinated manner as evidenced by the fact that consumers are absconding from care to suicide or self-medicating with alcohol or drugs because they can not access care.

The month after people are discharged is when people are at the highest risk. There are reports about people absconding from care to suicide - nobody is asking the question as to why people are absconding from care to kill themselves. Is being in care that intolerable for some people?

(Consumer Advocate, Victoria, VMIAC Consultation #18)

Self medication with drugs and alcohol in order to cope with lack of support and resources.

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

Like all health care, we have serious concerns about the adequacy of the mental health workforce and its ability to treat people in a timely and appropriate manner. The shortened length of stay all too often results in people being discharged, with referrals to all over stretched community mental health services. The burden on the individual and their family is huge, as the individual may not receive the type and quality of treatment required. Conditions remain untreated and the severity of the illness increased - at times with disastrous consequences.

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

6.2.11.2 Lack of comprehensive care

Concern was also expressed that treatment and support is not available to meet consumers' 'specific needs during the onset, acute, rehabilitation, consolidation and recovery phases ...' as there are insufficient services, those operating are overstretched and people are being case managed for very short periods of time.

In general the Mental Health services are inadequate and stretched, and this often results in ineffective treatment. Ineffective treatment can mean that consumers' wellness is often not maintained to a satisfactory level, and this in turn creates an increased load for carers.

(Peninsula Carers Council, Victoria, Submission #321)

People are case managed for a very short period of time.

(Anonymous, Victoria, Morwell Forum #16)

Care may be available freely to those who damage property or other people but my submission is that more funds should be available for support of the mentally ill so that they have the very best opportunity to reach independence and their full potential which incidentally may save taxpayer's funds in the long term.

(Carer, Mother, Victoria, Submission #238)

6.2.11.3 Restrictive approaches in the least empowering setting

The principles of choice and least restriction appear not to be upheld according to practices of sedation and restraint due to an inability to access services earlier in the illness cycle and the acute system is poorly resourced.

...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)

6.2.11.4 Lack of choice

Concern was expressed that enforcement of boundaries of catchment areas was further limiting choice and access to care:

Boundaries: Catchment areas of area mental health services limit member's choices of accessing mental health services closer to their homes. Boundaries often take in a number of confusing routes.

(Service Provider, Victoria, Submission #266)

6.2.11.5 Lack of individualised care

Concern was expressed that due to insufficient resources and lack of services, the guiding principle of individual care 'specialised mental health treatment and support are tailor-made for each individual' can not be realised:

More funding to make it possible for programs to be developed and tailored to individualised needs to make it possible for suffers to become worthwhile participants in the community.

(Carers, Parents, Victoria, Submission #241)

6.2.11.1 Access

The MHS is accessible to the defined community.

We need a clinic we can walk into just like a 24 hr clinic you would attend for the flu. Why can't we have it? Why do I need to self harm myself to receive relief? Why do I need to overdose to receive attention? Do I and many, many more need to die before we attend to what we preach that mental illness is like a physical illness?

(Consumer, Victoria, Submission #202)

Under this Standard, submissions and presentations indicate concerns about:

  • access not possible even if there is risk of harm to self or others;
  • carers need to be heard;
  • problems with phone triage;
  • lack of access to private psychiatrists, GPs, counsellors and rehabilitation services;
  • access denied if consumer has a diagnosis of 'personality disorder';
  • difficulties accessing services for people with mental illness and drug and alcohol problems; and
  • lack of access to care resulting in entry into the criminal justice system.

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)

The community consultations pointed to an inability for consumers to access treatment and support services, both within the community and inpatient care, which resulted in a whole series of rights being infringed for consumers, carers and the community. For the consumer, the consequences of these infringements can include increasing disability and hence consequent inability to care for oneself or others, inability to participate socially or work or study, in some cases the potential for harm to self or others, and becoming homeless and poor.

Increasing disability also exposed the consumer and their family to discrimination and social exclusion further compounding their illness. For children and youth, failure to gain access to services at this time of their life placed their future life course at risk as they were expelled from school, their problems behaviours increased which further disrupted relationships with their peers.

Similarly, increased burdens on carers disrupted their ability to participate socially and work when their family member became increasingly ill and required increasing care. Family isolation and increasing instability were also frequently reported due to the lack of community support and acceptance (high levels of stigma and discrimination) and lack of family-centred approached to treatment and support. For the community, rights to safety were infringed upon and social and economic cohesion disrupted.

6.2.11.1.1 Access not possible even if there is risk of harm to self or others

We do not know how many patients have committed suicide as a result of being denied a service, but we have heard reports of individuals who have successfully suicided shortly after being refused hospitalisation and being left to fend for themselves. Additionally, we have had quite a number of patients tell us that they took an overdose or slashed their wrists as a means of gaining hospitalisation. Our feedback also indicates that many patients are just left to deteriorate until such time as they finally get admitted in a much worse state than was necessary.

(VMIAC, Victoria, Submission #332)

My sister had suffered with bi polar disorder for 30 years ... Sadly she took her life on 18th June 2004. On that day I was going to take her shopping but she didn't feel well. She said to me what about Psychiatric Services. But she always presented so well when they interviewed her that I knew they wouldn't take her in, so I took her home. She said she felt better just talking to me on the way over to our place. And many times over the years I would bring her home for a few days or a week to help her get over her depression. The next day I was going to be home at 2:00pm from work. That morning she took her life. What a waste of life. If only the system had a more open door policy. I wouldn't feel so guilty for leaving her that day.

(Carer, Sister, Victoria, Submission #286)

A constant theme throughout many submissions was not only an inability to access services when needed, but that access was also difficult when consumers were at risk of self harm or harm to others. According to this information it would appear that standards 11.1.4 'The MHS is available on a 24 hours basis, 7 days per week' and 11.1.2 'The community to be served is defined, its needs regularly identified and services are planned and delivered to meet those needs' are not being met.

Whenever I contact the CAT [Crisis Assessment and Treatment] team for one of our clients the response is always "are they at risk of harming themselves or someone else" and the answer is no. You can't get help then. If they aren't in crisis they don't get help.

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

When you phone up Lifeline or Personal Emergency it sometimes take's anywhere from 3 to 23+ times to get through. When you are in emergency condition, or crisis, whom' is going to reach out 23+ times to get help?

(Consumer, Victoria, Submission #112)

The situation in trying to access care is appalling. If you have depression and you think you might harm yourself or even someone else - forget it! You won't get help. But if you are already hurting yourself or someone else then the chances are that you'll get help. The problem is that most people don't get care until they really are in a crisis.

(Consumer Advocate, Consumer Advocate, Victoria, VMIAC Consultation #4)

Recently a friend of mine went to hospital willingly and was turned away. So out of sheer frustration with not being able to get help she picked up an ashtray and threw it at the window and smashed it. They called the police. They took her to the police station and called the Crisis Assessment Team (CAT) who then admitted her! It's a joke that someone has to do something like that to get care.

(Consumer Advocate, Victoria, VMIAC Consultation #5)

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 ... I don't have the education required to be a social worker - I don't even know what the right thing to say is without creating more damage to me or to them.

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

Lack of response to notifications re suicide

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

A person has to be considered "acute" to see a psychiatrist from Grampians Psychiatric Services;

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

What is humanely acceptable about a system which withholds treatment for people with a mental illness who do not recognise when they are unwell, until a 'crisis situation' occurs, when that 'crisis' may possibly mean suicide or involvement in other tragedies (which always seem to make the headlines) and which, apart from the profound anguish and pain of the families concerned, is surely another impediment in eliminating the stigma of mental illness?

(Carer, Mother, Victoria, Submission #178)

I know of no other illness where we wait until the person needs the intensive care ward and their family is in chaos before we address it.

(Carer, Mother, Victoria, Submission #307)

My son has presented himself at casualty on a number of occasions because he WANTS help and does not WANT to be the way he is. He cannot control his moods swings or the violent outbursts. He has also been taken to casualty by the police on several occasions although he usually goes with them willingly. The police have been called to my home several times, either by myself or my neighbours, when my son has been behaving violently in the home. Although the police have always been very good when they have attended, they really can not do much other than transport him to the hospital and leave him there to wait, often for up to five hours to be assessed. On some occasions my son has walked out after waiting many hours without being seen.

(Carer, Mother, Victoria, Submission #296)

In the past I have been told by CAT team members whilst in crisis. You know more about your diagnosis than we do, Call us back if you can't get it under control. In those days control usually meant I would SM. so badly I would have to sew or patch myself up. How far does a person have to go to say I need help and I need it now? (author's emphasis)

(Consumer, Victoria, Submission #112)

Throughout our consultations people have spoke of the difficulties they have accessing the mental health services they feel they need, both in acute and community care. In acute care, consumers have spoken of being refused hospital beds even though they were at a crisis point, only to be admitted a few days later in an acute psychotic state. They tell stories of fronting at emergency departments of hospitals, only to be turned away without being properly assessed by a doctor and without being given any advice or assistance. They speak of their general practitioners refusing to believe they were hearing voices and of CAT teams visiting and quickly leaving because they determined 'you're not going to hurt yourself or someone else'. There is a clear picture that emerges -help is reserved for the most psychotic episodes only and that prevention or early intervention is of a low priority. Acute psychiatric services are under-funded, rationing access to a point where people have to beg for assistance.

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

A chronic shortage of acute inpatient beds leave crisis and assessment teams (CAT) in the situation of having to decide who will be admitted and who will not, based on who is 'most at risk'. Whether the consumer would 'benefit' from an admission is not enough to guarantee access to an acute inpatient bed. There are simply not enough beds for those who need them. In addition the option of intensive home treatment declines as CAT teams more and more struggle to meet the increasing demand for assessment.

(Health and Community Services Union, Victoria, Submission #220)

But on the 14th October [2004] she cut herself again in the early hours of the morning. I called the C.A.T Team to record the incident. I was told they would get back to me the following day. I'm still waiting.

(Carer, Mother, Victoria, Submission #352)

We are fortunate that she becomes a danger to herself and others when acutely unwell otherwise she would probably receive no treatment at all.

(Carer, Mother, Victoria, Submission #299)

It may be timely to review the system - for many, it is complicated, convoluted and un-navigable with people seeking help being turned away, and falling through its cracks. There may be more effective, efficient, and user friendly ways of designing a mental health system.

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

Crisis time: I called the CAT team. The CAT team would not come until the police came. This was because of an intervention order that had been put on him at one stage when he had relapsed & substituted speed. [X] heard police mentioned & disappeared. After the police left, I phoned my brother. He came. I answered a knock at the door. It was [X]. Blood was pouring from his forehead, he was quivering, drenched in blood and sweat! I just held him in my arms while he was telling me he had to dig the brain chip out of his head. We took him to Clayton's Hospital emergency department. He was admitted to the psych ward as an involuntary patient.

(Carer, Mother, Victoria, Submission #353)

When my son has been assessed at casualty all they say is that he can't be admitted because he doesn't meet "the criteria" and send him home with valium! This is just a band aid solution and gets him out of their hair for the moment, but his behaviour is the same again within hours.

(Carer, Mother, Victoria, Submission #296)

1. Never enough beds in Upton House or other mental health hospitals. 2. Never enough members on the C.A.T. team therefore they can't come for many nights. 3. Nowhere for people with a mental illness to live, not enough is provided for ... the last time he was admitted to hospital not long ago (July-August) there were no beds vacant so he had to go to Box Hill emergency until there was a bed available. (author's emphasis)

(Carer, Mother, Victoria, Submission #310)
6.2.11.1.2 Carers need to be heard

In this regard it is a reactive system, whereby consumer's rights take precedence over their welfare to an utterly illogical extent and something bad has to happen before something can be done. It fails them, it fails carers and it fails the community. For my son and others, who, like him do not recognise when they are unwell it means that by the very nature of their illness, when they are unwell, they are unable to access, accept and use voluntarily available treatment. This leads me to the belief that a mentally ill person's fundamental right to treatment and care should transcend all other considerations even when they are not well enough to seek treatment themselves.

(Carer, Mother, Victoria, Submission #178)

Another example supporting claims that a crisis is required before services are provided is that carers may be unable to initiate a response from services or are not heard. One mother highlighted this as a matter of serious concern for her son as he is incapable of seeking treatment when he is unwell.

Is it acceptable to place the responsibility for seeking treatment upon a person who is paranoid and delusional and totally incapable of seeking that treatment?

(Carer, Mother, Victoria, Submission #178)

It is exhausting to be on 24-hour alert with our family member, but to be ignored, disregarded or invalidated when we call for help is destructive to our confidence to continue in the role of carer year after year, decade after decade. Such scant assurance that services will indeed be available when we have been pushed to our limits leaves us anxious, exhausted and despondently wondering where to turn. Our need to rely upon services that evidently are not adequately informed in mental health treatment and therefore begrudging in the response places further stress on us as carers and merely adds to our load.

(Carer on behalf of group, Victoria, Submission #283).

Carers are often best placed to notice subtle changes in the person for whom they care, and usually the first to notice the early warning signs of a relapse. However health professionals usually do not recognize the value of this information, and in fact when carers try to pass on this information it is often ignored. This can lead to additional problems for carers and a full blown episode for the consumer often with devastating consequences. Unfortunately it is the carers who usually bear with the consequences of a relapse not the health professionals.

(Peninsula Carers Council, Victoria, Submission #321)

The CAT team came but only after my insistence. The workers were excellent, stated that the new medication did not seem to be helping and that this feeling would probably pass. Meanwhile he should continue to seek help and not do anything 'silly'. They contacted the psychiatrist for him and the medication was changed back to the old one. The CAT team continued to come for 3 days until the mood and thoughts began to turn away from suicide and become more normal. It has taken several months to restore his confidence in his ability to cope with life. This lack of confidence was acerbated by the refusal of the triage nurse to take his own words seriously. The treatment for CAT was an excellent and effective intervention.

(Carers, Parents, Victoria, Submission #275)

Gaining access to drug detox and rehabilitation services requires a level of life management that is beyond the capacity of a mentally ill, addicted young person. While the procedures may provide a reasonable test of motivation for those without mental illness, the chaotic life of a person with schizophrenia presents major obstacles to obtaining the necessary assistance.

(Carer, Mother, Victoria Submission #320)
6.2.11.1.3 Problems with phone triage

Concerns were also expressed with treatment and support mediated by a telephone triage service.

The phone triage service has real problems I think. Once recently when I phoned the triage service for help I was told that I was "Not for Service".

(Consumer, La Trobe Regional Hospital, Victoria, Morwell Forum #17)

The after hours psych services number in this region is switched through to a town 100km away, and then the consumer's issue is not referred back to the local nurses;

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

Untimely and inappropriate responses due to lack of resources: We have struggled for 10 years to persuade our elder daughter with Bipolar Disorder ... to connect with psychiatric services ... Finally, in the middle of a manic episode in 2003, she rang a CMHC in SW Melbourne during business hours and got an answering machine. She left her name and telephone number but got no response. Two weeks later she was so unwell that I called the clinic to complain that they had not responded to her call - apparently her neighbours had also complained to the police. Two nights later she received a knock on the door at 9.45pm and was confronted by two men who said they were mental health workers from the CAT Team. She was living by herself in a rented house (her house mate had left) and was very frightened and ordered them off the property. She heard nothing further from the clinic and it was another three months before we finally managed to connect her with a private psychiatrist and get her onto medication - by this time she had lost her licence, her job and her accommodation and was forced to move home with us.

(Carer, Mother, Victoria, Submission #299)
6.2.11.1.4 Lack of access to private psychiatrists, GPs, counsellors and rehabilitation services

Reports were also received regarding the lack of adequate staff levels and services to meet the needs of the community, especially in rural and remote areas. This was evidenced by long wait lists for access to available staff, or no staff or services to meet the needs of special groups. Standard 11.1.2 states: 'The community to be serviced is defined, its needs regularly identified and services are planned and delivered to meet those needs'. In particular, one submission highlighted that an inability for the consumer to access services earlier in the course of their illness, may make their illness less responsive to treatment at the later stage.

Depending on the nature, severity and urgency of the problem, other barriers may then come into play, such as "closed books", waiting lists, reluctance of specialist services to get involved (a mix of work practice and funding barriers) or the frightening and uninviting nature of such environments. This means that people typically present late in their illness course, and may be much less personally accessible and responsive to treatment. Treatment often gets off on the wrong foot and there is much collateral damage to repair.

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

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)

Psych disability rehab support sector - our services are funded to provide support to a group of people - the demands on our services always exceed the target but in the past we have worked hard to deliver as much as we can. We have continually raised this with the mental health branch as a problem that needs addressing but we've had no success. So we have been left with no other option but to make the decision to work to target only. This is very difficult because now there are people who need our service and now can't access it. To not be able to access services is a breach of people's human rights.

(Anonymous, Victoria, Morwell Forum #4)

The distribution of private psychiatrists ... the practices of large numbers of private psychiatrists are concentrated in the capital cities. In Melbourne this situation is extreme. Within a fifteen kilometre radius of the Melbourne GPO can be found the highest concentration of private, practicing psychiatrist in the southern hemisphere and the second highest concentration in the world - second only to Manhattan, New York. The allowance of these capital city concentrations means that vast areas of Australia and thousand of people have virtually no access to psychiatry. This has to be seen as a demonstration of gross inequity given the fact medial undergraduate education and post-graduate psychiatric training are subsidized to such a high degree by tax payers.

(Anonymous, Victoria, Submission #318)
6.2.11.1.5 Access denied if consumer has a diagnosis of 'personality disorder'

Concern was also expressed that a diagnosis of 'personality disorder' resulted in an inability to access treatment and support services form the MHS. Standard 11.1.1 states: 'The MHS ensures equality in the delivery of treatment and support regardless of consumer's ... previous psychiatric diagnosis ... or other disability'. For many people with personality disorder, failure to access treatment resulted in deteriorating mental health and entry into the criminal justice system.

Axis II disorders: The Mental Health Legal Centre also hears from people with serious mental health problems who are denied services. Sometimes these people are not deemed serious enough (yet) and sometimes they carry the 'wrong' diagnosis - often Axis II diagnoses. Human rights abuses are as much about neglect as they are about being involuntarily detained. The MHLC supports the idea that resources urgently need to be channelled into services for people labelled as having Axis II diagnoses. If the way to do this is not through a mental health system then an alternative needs to be found and found quickly. However we would argue that a less medical model mental health system would be more humane, more accessible, more aware of issues to do with human rights AND more inclusive of all psyche distress. This would have big advantages for people who have been labelled as having both Axis I and Axis II disorders. Our experience is that many people have multiple diagnoses, which change through time and circumstance so that an attempt to realistically separate Personality Disorders from mental illness will probably fail.

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

People with more complex issues such as homelessness, drug and alcohol issues, being diagnosed with Borderline Personality Disorder or have aggressive behaviour find it more difficult to access support and clinical services. This difficulty can be due to services wanting to transfer the responsibility to other sectors, stating that the diagnosis does not fit their criteria (particularly BPD), or stating they do not have the capacity/flexibility to work with this population.

(Western Region Health Centre, Victoria, Submission #292)

... my daughter who is 25 years old and has been diagnosed with B.P.D. (Borderline Personality Disorder) and depression - began cutting herself, and was at risk. I had to wait three weeks before she could see her psychiatrist, who told me to call the C.A.T Team (Crisis Assessment Team) and take her into Emergency at my local Dandenong Hospital if needed. I called the C.A.T Team who attended the first time, after 24 hrs of calling, to tell me they couldn't do anything to help because my daughter wouldn't accept any at the time ... What did they expect? But told me to ring them again if I needed to. What for I don't know!

(Carer, Mother, Victoria, Submission #352)
6.2.11.1.6 Difficulties accessing services for people with mental illness and drug and alcohol problems

Concern was also expressed regarding the difficulties in accessing the few services that provide treatment and support for people with mental illness and drug and alcohol problems:

Poor accessibility of drug and alcohol services for people with mental illness and few services which treat drug and alcohol abuse and mental health issues simultaneously.

(Victorian Office of the Public Advocate, Victoria, Submission #284)

There is evidence to suggest that at least 46 per cent of females and 25 per sent of males reporting drug use also experience mental illness. There is also evidence to suggest that people who use drugs, and in particular, illicit drugs have poorer heath outcomes which is exacerbated by a lack of access to health services.

(Anex, Victoria, Submission #314)

Research and practitioner feedback indicate that especially for the vulnerable and marginalized sub-populations of people who use drugs (eg. street-based injecting drug users), there is a lack of accessible services that could address their mental health needs.

(Anex, Victoria, Submission #314)

It is further submitted that given "the chasm between the drug-using community and health and welfare providers" which results in services being less readily available and accessible for this group of people, there is a serious concern as to whether the right to health for this group of people is being substantively met.

(Anex, Victoria, Submission #314)

Among homeless persons, 62 per cent of respondents in a study conducted in Melbourne reported having special needs in addition to their drug- and alcohol- related problems. Of these, 50 per cent reported a psychiatric disorder including depression, schizophrenia and personality disorder (Horn, 1999).

(Anex, Victoria, Submission #314)
6.2.11.1.7 Lack of access to care - resulting in entry into the criminal justice system

As mentioned previously, failure to access services when needed in some instances resulted in consumers entering the criminal justice system purely because of their escalating and untreated mental illness.

The inability of people living in poverty to access the mental health system in a time of crisis predisposes them to the risk of offending and potential incarceration. One of the many concerns we have is the overrepresentation of poor people with a mental illness in prison.

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

6.2.11.2 Entry

The process of entry to the MHS meets the needs of the defined community and facilitates timely and ongoing assessment.

Under this Standard, submissions and presentations indicate concerns about:

  • problems with entry via Emergency Departments; and
  • triage services.
6.2.11.2.1 Problems with entry via Emergency Departments

Concerns were expressed about entry via emergency departments regarding problems with the assessment process and consumers having to repeat their stories many times. According to Standard 11.2.4: 'The entry process to the MHS can be undertaken in a variety of ways which are sensitive to the needs of the consumer, their carers and the defined community'. Notes to this Standard state that this process should be non-traumatic and non-damaging.

There are many injustices done to the mentally ill and their carers but I would like to tell you about one specific area that particularly concerns me. That is the situation that exists in all public hospitals where people who wish (or their carers wish) them to be admitted to a public psychiatric ward have to be admitted through the general emergency section. This, I strongly believe, is so wrong!

(Carer, Mother, Victoria, Submission #176)

We knew by his symptoms and after talking with the staff in Monash Psychiatric Ward that there was nothing else that could be done except take him to Monash Hospital through the Emergency Department. The waiting room was packed with sick people and quite a few young children. After I had explained my son's problem we were told to take a seat and wait - we waited nearly five hours! Can you imagine waiting all that time with an acutely psychotic patient, who, for the first time in eighteen years recognised that he was very unwell and was making an attempt to 'hold himself together'? I'll never forget the experience. My son was so agitated. Several times he wheeled out the Emergency Entrance and tried to get in the Psychiatric Ward himself with me in hot pursuit trying to tell him that he had to go through 'the right channels' ... Whilst the doctor went off to arrange a trolley, my son made a frantic escape attempt and pulled the emergency ambulance door off it's hinges and was only saved from escaping and possibly harming himself by a very strong security guard.

(Carer, Mother, Victoria, Submission #176)

I believe that people with a psychiatric illness should be seen in a special emergency section reserved for them only - this could be attached (or very near) to the psychiatric ward of the particular public hospital. This would make it easier for the admitting psychiatrist to see the prospective patient in a quieter and less threatening environment and, hopefully, create a much smoother and quicker transition to the admittance procedure.

(Carer, Mother, Victoria, Submission #176)

Can you imagine going to emergency department with a Paranoid Psychotic patient who is being admitted involuntary, having to sit with open doors, TV is always on in ED waiting room (my loved one receives messages via the TV; e.g. he's dead, he has killed someone, run over someone)? Paranoid and suspicious of other people. He has lots of enemies. Isn't the trauma and stress great enough without this not being a safe place for both them and the other people in emergency?

(Carer, Mother, Victoria, Submission #242)
6.2.11.2.2 Triage services

Mixed reports were received with regards to triage in general.

I have also had comments about triage being difficult to deal with.

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

Yes the triage system is a gateway that gets it right more times that it gets it wrong.

(Funding body, Victoria, Morwell Forum #15)

Triage works well for what it is.

(Anonymous, Victoria, Morwell Forum #16)

6.2.11.3 Assessment and Review

Consumers and their carers receive a comprehensive, timely and accurate assessment and a regular review of progress.

Under this Standard, submissions and presentations indicate concerns about:

  • assessments conducted over the phone;
  • continuous assessments without any treatment; and
  • the need for a consumer to have an advocate.
6.2.11.3.1 Assessments conducted over phone

Concern was expressed by one carer regarding the inappropriateness of an assessment over the phone.

When a person has a history of a mental illness this should come into consideration. When my daughter was ill the CAT team wanted to conduct an assessment over the phone. What good is a phone assessment when someone is that ill? It's ridiculous! The Mental Health Act needs to be reviewed and modified.

(Carer, Mother, Victoria, Melbourne Forum #2)
6.2.11.3.2 Continuous assessment, no treatment

Reports were also received about consumers being assessed, but not receiving any treatment and support services that were tied in with the assessments:

My partner decided to come off her medication. It took 12 months and she was okay initially but then she became suicidal so I brought her down here to the city (Melbourne). She was assessed at the Broadmeadows clinic late at night and then sent home! 2 weeks later they did another assessment. But the problem was she wasn't getting the care she needed - it was just assessments.

(Consumer Advocate, Victoria, VMIAC Consultation #7)

Attempted suicides are assessed by a CAT team and then they go back into the community and often the environment they go back to is not a good environment - there's no support for them.

(Clinician, Victoria, Morwell Forum #11)

...as the Victorian Auditor General's report shows, the CATT teams have become increasingly embattled and are all too often reluctant to assess and treat people comprehensively in their home and community environments. There has been an excessive reliance by CATT teams on police in crisis situations. With the establishment of the eCATT model in Victoria, which saw psychiatric assessment resources located in many emergency departments, there has been an increasing tendency to direct new assessments into these stressed environments, even during normal hours.

(Patrick McGorry, Professor of Psychiatry, Victoria, Submission #180)
6.2.11.3.3 Consumer perspective not heard without an advocate

One carer expressed concern that the views of people with mental illness are often not taken into account during the assessment process and that without an advocate, consumers are often not believed. The lack of access to advocates (as noted under Standard 1 - Rights) further compounds this problem:

Patients should not have to find an advocate before they are believed.

(Carers, Parents, Victoria, Submission #275)

6.2.11.4 Treatment and Support

The defined community has access to a range of high quality mental health treatment and support services.

Like the major physical illnesses, notably cancers and cardiovascular disease, a substantial proportion of the death and damage caused by mental disorders is already avertable with existing knowledge (Andrews et al 2004). It isn't being used. It isn't available to most people who need it. Even individual wealth cannot buy it. The rich and powerful might be able to buy new organs but chances are they can't buy quality mental health care or better outcomes.

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

Under this Standard, submissions and presentations indicate concerns about:

  • lack of services for youth;
  • lack of services for people with dual diagnosis - drug and alcohol;
  • lack of services for people with dual diagnosis -mental illness and 'other disability';
  • lack of services for people with complex needs;
  • lack of treatment and support in the community for people on Community Treatment Orders (CTO's) or in crisis;
  • lack of services for people living in rural and regional areas;
  • lack of services for people with personality disorders;
  • the lack of involvement of carers;
  • lack of mental health services for the aged;
  • consumers subject to the criminal justice system; and
  • lack of treatment and support available to consumers after release from prison.

On three occasions I have been taken by ambulance to a hospital in Melbourne, Victoria, after taking an overdose of medication. On all three occasions I was discharged after recovery in the accident and emergency unit. I was still feeling suicidal, I live alone without family and with no available support. I can only supply you with these skeleton details now, as I am feeling too distressed to write more about the incidents in depth.

(Consumer, Victoria, Submission #84)
6.2.11.4.1 Lack of services for youth

Submissions indicated that the services for youth need to be approached in multiple integrated ways as other mental health problems and life crises were generally associated with this age group (e.g. drug and alcohol abuse). In particular, the necessity to intervene at this early stage was noted and figures were presented indicating the magnitude of the problem and ramifications of failure to provide services to this vulnerable group of consumers. Standard 11.4.3 ensures access to a 'comprehensive range of treatment and support services which are, wherever possible, specialised in regard to a person's age and stage of development'.

At Orygen youth health, we do have the capacity to treat around 600 new 15 -25 year olds with non-psychotic disorder each year, however we still have to refer out large numbers of patients (1400 referrals p.a.) who really need a specialist approach (as one index of this, 25% of those we are unable to accept have attempted suicide recently and are clearly significantly impaired). Moreover, we have no consultation-liaison team to work with GP's or counsellors to manage these and other cases.

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

Mental disorders are the most important single group of disorders in late adolescence-early adulthood, after which the relative contribution from these disorders decreases at older ages. Mental disorders are also less common before adolescence, though much of the preventable risk for later illness is probably generated during this period of life ... These patterns across the lifespan raise the issue of cost-effectiveness, a key basis for carrying out burden of disease studies in the first place, and consequently the greater potential value of interventions earlier in life. Indeed Murray and Lopez addressed this issue placing the maximum weighting for the unit of disease burden, the DALY (disability adjusted life year), around the age of 22 (Figure 2). Yet this early adult period is in fact the weakest link in our whole health system for detection and treatment of mental disorders in both primary and specialist care.

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

When Professor McGorry started the Pace Clinic, I wrote and thanked him because at that stage young people like my son could be put on to him. [The PACE Clinic supports young people (aged 14-30) who may be at risk of developing psychosis.]

(Carer, Mother, Victoria, Submission #211)

Treatment in the Adolescent Psychiatric Unit at Monash Medical Centre was excellent, and the design of the facility showed an understanding of the personal and social needs of patients and visitors.

(Carer, Mother, Victoria Submission #320)

Concern was also expressed for carers of youth with mental illness and their need for support services:

Carers of children with a mental illness, even though their child doesn't voluntarily want to enter into programs there should be more support given to carers. We see more and more children self medicating and then becoming violent toward their families.

(Clinician, Victoria, Morwell Forum #11)
6.2.11.4.2 Lack of services for people with dual diagnosis - drug and alcohol

I am concerned about people with a dual diagnosis, lack of their treatment options is a real problem. People are unable to receive treatment.

(Anonymous, Victoria, Melbourne Forum #5)

NGOs look after our psychiatric and physical needs. Where do people with a dual disability go? There is nowhere.

(Consumer, Victoria, Morwell Forum #9)

Standard 11.4.7 states: 'The MHS ensures access to a comprehensive range of services which are, wherever possible, specialised in regard to dual diagnosis ...' The notes to this Standard indicate that this includes dual case management with alcohol and other drug services. Concern was expressed that there were an insufficient number of such services to provide treatment and support to these consumers with complex needs:

It is ORYGEN's experience that the lack of integration between drug and alcohol and mental health services in Australia has significantly contributed to the poor detection and treatment of mental illness amongst young people with substance abuse. This results in waste of resources and long-term psychiatric and substance use problems for individuals who could otherwise be helped.

(ORYGEN Research Centre, Victoria, Submission #258)

There are real problems with the lack of partnerships in dual diagnosis. Because I have a mental illness and use drugs I can't get care from anywhere.

(Consumer, Victoria, Footscray Forum #6)

We don't have a funded consultation liaison service for patients with comorbid drug and alcohol and mental health services.

(Psychiatrist and Clinical Director, Victoria, Morwell Forum #18)

Substance use and mental disorders overlap more than ever before, yet in Australia, we have managed to separate the systems of care intended to respond to them so that now we have evolved two underfunded parallel systems with poorly compatible models and territorial attitudes. Embryonic programs have been developed to bridge this gap but the solution requires much more radical surgery and regrowth.

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

Drug and alcohol services also operate on the basis of "evidence" that these severe, persistent and life-threatening illnesses will respond to brief, almost trivial, interventions just as well as longer-term ones. One suspects that neither type of intervention is having much impact on the untreated or natural course. Indeed this type of evidence has been used to assert that very little of the burden of disease associated with drug and alcohol problems is avertable with current knowledge (Andrews et al 2004).

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

In all hospitals (four), supported accommodation facilities, and drug/alcohol services, there was failure to address the complex interaction between mental illness and substance abuse, with disastrous consequences. Integration of training, services, and philosophy between Mental Health and Drug & Alcohol Services should be a high priority!

(Carer, Mother, Victoria Submission #320)

Failure to address issues raised by a Dual Diagnosis has left thousands of young people with mental illness floundering, unemployed, uneducated, unskilled and many of them in gaol or homeless. As a group they seem to have been thrown on the Mental Health scrap heap, regarded as having developed an illness which easily becomes too entrenched to treat. A number of our younger daughter's friends have suicided which has added to her distress. And now the 'law of diminishing returns' applies - this being the way one senior clinician put it to me. He was discharging our schizophrenic daughter from HDU in an Acute Inpatient Unit directly onto the street after her sixth hospitalisation.

(Carer, Mother, Victoria, Submission #299)

Our younger daughter called Drug & Alcohol Services on one occasion - about four years ago - and asked for assistance to quit cannabis, She was told: "you sound as if you are doing just fine" - end of story! It was an opportunity missed and unfortunately she is not doing fine - she has been hospitalised at least three times since then for periods of more than a month and is now reaching an age when she is past qualifying for any intervention at all because the emphasis in Victoria has switched to early intervention and less serious illnesses that can be treated by a GP with six sessions of psychological counselling.

(Carer, Mother, Victoria, Submission #299)

From personal experience and discussion with others a psychiatric tag prevents or delays the substance abuser from addressing the problem - excess - and seeking the solution - abstinence. Furthermore - lithium carbonate - usually prescribed for bi-polar can have harmful effects. From experience, many practitioners do not take adequate care with monitoring blood levels. Nephrology departments are encountering increased cases of lithium toxicity [leading to] renal failure. ... Tragically, after 25 years of lithium treatment for a bipolar disorder, I finally encountered a doctor who rejected the tag and ceased lithium carbonate. I have maintained sobriety which has given me the strength and esteem to deal with the consequences: dialysis to transplantation. This is not uncommon (author's emphaisis).

(Consumer, Victoria, Submission #143)

Individuals who have a mental illness as well as a drug and alcohol problem are even more limited in their access to services. They face discrimination on both sides of the system. Drug and alcohol agencies are not set up to deal with issues of mental illness, and mental health agencies declare their work sites to be drug and alcohol free. People with a dual disability find themselves in a bind. There are services available that cater for them, but like most other organisations, they are under resourced and over burdened.

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

Returning to Melbourne in early 2001, [X] was admitted to supported accommodation provided by Psychiatric Disability Rehabilitation Services. Although progress was made, she suffered a severe psychotic episode, which eventually led to hospitalisation for a change of medication. During the long hospital stay that followed, the extreme failure of services to meet the needs of mentally ill patients with drug addiction became painfully clear, as illustrated by the following developments:

•  She used heroin.

•  She had a heroin-related nerve injury, while sleeping in the lounge of the hospital, which resulted in a six-month partial paralysis of her right hand.

•  She refused urine screening.

•  She committed a heroin-related crime while on day leave.

•  She was not provided with drug rehabilitation services.

•  She was excluded from her PDRS accommodation, where budget cuts were leading to reduced hours of supervision.

(Carer, Mother, Victoria Submission #320)
6.2.11.4.3 Lack of services for people with dual diagnosis - mental illness and 'other disability'

Standard 11.4.7 states: 'The MHS ensures access to a comprehensive range of services which are, wherever possible, specialised in regard to dual diagnosis, other disability ...' In the notes to this Standard is 'collaborative treatment with ... disability services'. Concern was expressed with regard to the lack of treatment and support for people with disability, including intellectual disability, physical disability and Aspergers Syndrome:

In recent years, OPA, and other support organisations and service providers have raised concerns about the failure of the existing service system to meet the needs of people with dual/multiple disabilities ... OPA observes the following continuing difficulties:

•  Despite the existence of substantial research data to indicate that people with intellectual disabilities are more at risk of developing mental illness than the general population (Hudson & Chan, 2002); gaps in service provision for people with intellectual disability and mental illness remain. People who have an intellectual disability are less likely to receive assistance from mental health services because they are considered to have behavioural problems attributed to their intellectual disability rather than to their co-existing mental illness.

•  Service boundary issues; people with dual intellectual disability/psychiatric disability have difficulty accessing the mental health system, and intellectual disability services are often left to support people with dual/multiple disabilities without funding and with non-specialist staff.

•  People with presentations that cross behavioural, psychiatric and intellectual disability boundaries are often the subjects of service boundary disputes about which service should provide 'the' service to these clients.

(Victorian Office of the Public Advocate, Victoria , Submission #284)

There are a number of patients/clients with physical and psychiatric co morbidity with significant unmet needs. The lack of understanding of these complex needs by federal and state governments leads to a subsequent lack of resource allocation to assist, this results in increased morbidity, resource usage, significant distress and mortality. In addition, patients/clients awaiting psychiatric beds are being cared for in sub-optimal conditions in Emergency Departments and medical/surgical wards and this can result in increased use of mechanical restraint and sedation and a delay in the commencement of appropriate psychiatric treatment.

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

[He has major depression and recently diagnosed Aspergers Syndrome] The public mental health system is only willing to consider treating him if he is clearly psychotic, although they admit he must have deteriorated considerably since he was employed. ... It is not just that someone displaying this level of illness and dysfunction, showing poor memory, disorganisation and other cognitive loss and alienation, should be unable to access services in the public mental health system. I fear that he will become as disabled as the other son before effective treatment is given and may not be so lucky as to fail to succeed at suicide or serious physical damage to another person. We fear that the mental health service will continue to fail him and that, if he does not suicide, he may well end up in the revolving door of the criminal justice system wherein there will be no effective treatment for his condition and in which he will suffer physical and sexual abuse while within "the care" of the State.

(Carers, Parents, Victoria , Submission #275)

In recent years, OPA, and other support organisations and service providers have raised concerns about the failure of the existing service system to meet the needs of people with dual/multiple disabilities ... OPA observes the following continuing difficulties:

•  Service deficits for people with Huntington's disease - behavioural issues associated with the illness can preclude people with Huntington's disease from accessing nursing homes and other disability services.

•  Few service provisions for people with multiple disabilities who, as a result of their mental illness are unable to 'comply' with treatment and care plans.

(Victorian Office of the Public Advocate, Victoria , Submission #284)
6.2.11.4.4 Lack of services for people with complex needs

Concerns were expressed regarding the lack of treatment and support services for consumers who have complex needs, including dual diagnosis (disability or drug and alcohol problems) and homelessness. The increasing number of people who are homeless and who have a mental illness and/or mental health problems has also risen with deinstitutionalisation and the subsequent lack of community based treatment and support services to meet the community's needs. Standard 11.4.6 states: 'The MHS ensure access to a comprehensive range of treatment and support services which address physical, social, cultural, emotional, spiritual, gender and lifestyle aspects of the consumer'. Standard 11.4.7 states: 'The MHS ensures access to a comprehensive range of services which are, wherever possible, specialised in regard to dual diagnosis ...' The notes to this Standard include 'dual case management with alcohol and other drug services'. Concern was expressed that there are an insufficient number of services to provide the appropriate treatment and support for these consumers with complex needs:

A central concern is the lack of training in dual diagnosis in the mental health system. While this is gradually changing, there are still relatively few places that can effectively support people with complex needs. Many are excluded from residential rehabilitation services because of a potential negative impact on other residents, because they have a dual diagnosis or other complications. Many people with complex care needs lose contact with their families and join the large number of homeless or transient people accessing crisis accommodation services. In these environments, people with complex needs become incredibly vulnerable and can be a danger to themselves and others. Some are evicted for not conforming to the service and thus fall through the gaps in the service system. Intensive Home-Based Outreach Services providing support to people with a mental illness at risk of homelessness need to be extended.

(The Network for Carers Of People With A Mental Illness, Victoria, Submission #319)

One of the positive changes in the sector in the last 4 years is that there has been a growth in services, particularly focused on people with more complex needs such as homelessness, and drug and/or alcohol dependence. These service models have been designed to be more flexible to meet the needs of the consumer population. However, the centre continues to identify key areas for further attention:
. Housing - chronic shortage
. Support Services; and
. Access to services.

(Western Region Health Centre, Victoria, Submission #292)

Community Mental Health services for a homeless mentally ill person cease when the "homeless" person passes from one area to another (St. Kilda to Melbourne CBD), carrying her belongings in a plastic bag.

(Carer, Mother, Victoria Submission #320)

Homelessness leads to a deterioration of psychological functioning and general health, raises the risk of substance abuse, and increases the likelihood that the person affected will need to return to emergency services for more intensive treatment.

(The Network for Carers Of People With A Mental Illness, Victoria, Submission #319)
6.2.11.4.5 Lack of treatment and support in the community for people on Community Treatment Orders (CTO's) or in crisis

Concern was expressed regarding the general lack of treatment and support to ensure comprehensive care for people on Community Treatment Orders or to respond to people contemplating suicide:

Effectively, CTOs extend involuntary status into the community, and yet in many instances community supports are fractured and insufficient to assist the consumer.

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

I have recently begun forming and facilitating a support group for women suffering from depression, the idea coming from the high number of cases of women I was seeing in my role as a Counsellor and the lack of our Mental Health service to adequately respond to suicidal ideation and ongoing support.

(Clinician, Victoria, Submission #234)
6.2.11.4.6 Lack of services for people living in rural and regional areas

In Victoria, many submissions indicated problems with access to services in rural and regional areas and that Standards 11.1.3 ('mental health services are provided in a convenient and local manner and linked to the consumer's nominated primary care provider') and 11.1.5 ('The MHS ensures effective and equitable access to services for each person in the defined community') were not being met for many consumers in these communities. For people living in many areas of Victoria there were no services which were convenient and local. Access to care involved long distances by car; a very significant difficulty for those who are not so readily mobile or are from low socio economic backgrounds. Even if consumers were prepared to travel, there were problems with long wait lists and the time required for appointments often seriously disrupted employment commitments. Also, if admission to hospital or long-term care was required, the consumer was isolated from their social and support networks.

We only have one inpatient facility for the region - people of a low socio economic background find it very difficult to travel long distances to get care.

(Clinician, Victoria, Morwell Forum #11)

I travel to Melbourne for care because there's no private psychiatrists in this area.

(Consumer, Consultant Victoria, Morwell Forum #1)

In order to get an appointment with a psychiatrist I send my patients to Melbourne - but even this means about a 3 month wait.

(GP, Victoria, Morwell Forum #8)

There's a real difficulty with the location and resourcing of hospitals. There's only one hospital in our area that will take mental health patients. This creates enormous problems for consumers being taken out of their local support systems.

(GP, Victoria, Morwell Forum #8)

You can't get care in the country. I travel 3.5 hours from the country to here (Melbourne) because I can get care here. I can't get care in the country but now I can't work because I need to travel down to here for care.

(Consumer Advocate, Victoria, VMIAC Consultation #8)

Lack of resources: lack of beds for short term and acute admissions; lack of supported accommodation ... those services and beds available are usually distant from friends and family

(GP in rural Victoria, Victoria, Submission #123)

In rural regions there are minimal levels of services provided. Usually hospital beds, when available, are distant from the towns in which the people live and there are few or no specialist services. This lack of specialist services results in a direct and calculable reduction in Medicare funding for the provision of services. In our region the level of this deficit is in the order of 3.2 million dollars. If the specialist services are not available then surely some way can be found that this money is available for service provision.

(GP in rural Victoria, Victoria, Submission #123)

If supported accommodation is available it is generally far from the patients support network and available only for short and inadequate periods of time.

(GP in rural Victoria, Victoria, Submission #123)
6.2.11.4.7 Lack of services for people with personality disorders

...people with Borderline Personality Disorder who have been chased, sometimes in seriously undignified and persecutory ways, out of the public mental health system that they are as entitled as anyone else to use.

(Consumer, Female, Victoria, Submission #203)

Consumers and advocates also raised concerns about the lack of services for people with personality disorder and problems associated with the disorder not being recognised or acknowledged by some clinicians and services. Evidence was presented indicating the positive results that can be achieved both at a personal and societal level from providing treatment to people with this disorder. Two submissions were received applauding the new service SPECTRUM for people with personality disorder but suggested that while it was a good start, it could not meet current level of demand.

Submissions reported that the disorder is not recognised and acknowledged:

...some people think I don't have a real mental illness and they make it obvious that they will perhaps listen to me, or pretend to listen to me, but will actually not take any notice of anything I am trying to say. It is extremely hard to get heard anywhere if you have this dreadful diagnosis .... Many of us who have been diagnosed (in the end) with this unflattering diagnosis have been around I the system; going in and out and in and out of hospital; having people tell us we are 'slashers'; having staff tell us that we are taking up beds that belong to really sick people; having people tell us that we are cutting up to attract attention to ourselves or monopolise staff time, for a very long time.

(Consumer, Female, Victoria, Submission #203)

I have had ten different diagnoses. [X] has had seven different diagnoses. At times we have both been considered to have real mental illnesses and at other times we have both been seen to have more dubious titles like personality disorders.

(Consumers, Victoria, Submission #194)

We die and for the community that is a solution to a problem of the pesky people who keep intruding into the medical sieving process where they don't belong.

(Consumer, Female, Victoria, Submission #203)

...we also need resources or the system will continue to fail people with a history of trauma ... those of us with personality disorders should not be institutionally discriminated against.

(Consumers, Victoria, Submission #194)

...if we are going to have a respectful, competent and inclusive mental health system how can we distribute services and resources in a way that is fair and respectful of the human rights of the maximum number of deserving people? Present delineations of 'neediness' are totally unacceptable. It is predominantly based on diagnosis, which discriminates very strongly against people with Borderline.

(Consumers, Victoria, Submission #194)

In challenging the existence of 'mental illness' at all they extinguish the belief that Axis I diagnoses are somehow more legitimate and more important than Axis II diagnoses. If there is no 'mental illness' then it doesn't matter if you've only got a disorder. One of the outcomes of this political position is that all forms of mental distress start to be seen as equally valid and equally deserving of society's resources and the emphasis is on the distress and self determination rather than arguing about validity.

(Consumer, Advocate, Victoria, Submission #166)

...the jargon of 'low prevalence' and 'high prevalence' disorders in their arguments about where money should be channelled. I am really concerned about us using this framework because it continues to totally exclude groups with Axis II diagnoses such as 'Borderline'. In the large epidemiological surveys that were carried out nationally in the late 1990s and which drive the debates about resource distribution Borderline Personality Disorder was excluded completely.

(Consumer, Advocate, Victoria, Submission # 166)

The population prevalence of Borderline Personality Disorder in Australia is approximately 1%. This is similar to the population prevalence of Schizophrenia. Both of these disorders are disabling and serious. Both have high rates of reported suicide. And yet, there is no comparison between the ways these two disorders are understood in the sector or 'sold' to the public by the sector. Within the sector Schizophrenia is seen as tragic, difficult but absolutely legitimate and 'BPD' is seen as difficult and a pain in the neck (and the public purse) - to be avoided except for those individuals who, quite literally, cannot be avoided.

(Consumer, Advocate, Victoria, Submission #166)

After everything that has happened these past six weeks my daughter has lost all faith and trust in the system & her psychiatrist and has refused to see him again. I don't know if I can get to see anyone in the future, which means she will be denied the help and care she greatly needs to recover and live a full and happy life.

(Carer, Mother, Victoria, Submission #352)
Difficulty accessing services because of diagnosis:

The first criterion for involuntary admission is that the person concerned appears to be mentally ill as defined by the Victorian Act: "'Mental disorder' includes 'mental illness', plus a range of conditions which are not mental illness for the purposes of the Act. Some mental disorders, such as personality disorders, are not 'mental illnesses' under the Act and cannot usually be the basis for involuntary treatment." ...It is extremely difficult to argue that a group of people (who are not deemed to be 'mentally ill' under the Act) are still a group with substantial and legitimate needs in the system. With the everyday shorthand use of the term 'mental illness' to describe the target population of everything, people who aren't mentally ill (in terms of the Act) can easily get left out ...

(Consumer, Advocate, Victoria, Submission #166)

The political reality is that the mental health system still uses the metaphor of 'the bed' to work out how it will distribute resources. The usual induction into a public service is through a stay in an acute unit. People go from an acute 'bed' to backup community services. So, those disorders (not illnesses) that are seen to not 'deserve' 'beds' will, unintentionally perhaps, be disadvantaged in a system, which relies on system-determined need criteria to distribute resources. This will be the case except when the system and services are put under an enormous amount of pressure by specific individuals who cannot be ignored.

(Consumer, Advocate, Victoria, Submission #166)

I have had Psychiatrists do dummy spits on me. The full repeated-in the seat out of the seat-raised voice. . "We treat serious illness here yours does not constitute that, Schizophrenia and Bi-Polar. What your diagnosis is (I have been diagnosed with (BPD, Clinical depression and P.T.S.D.) you are wasting our time and energies which could be spent elsewhere! You are not getting time lost from previous appointments and I am not going to treat you any more. I will be handing your case in at the next staff meeting. What are you going to do now, are you going to go running to the management?" I didn't want to disappoint her, so I did go to management -again.

(Consumer, Victoria, Submission #112)
Treatment for Borderline Personality Disorder which is working:

[My psychiatrist] sees me twice a week which sounds excessive but if you compare it to the unproductive , tumultuous, emergency service utilising, and personally destructive stuff that went on before you would not worry about the fact that I have two appointments a week. Because of this I can now work part time and I have even picked up one subject of my university studies. My psychiatrist is determined to keep me out of hospital and we have achieved this.

(Consumer, Victoria, Submission #203)

Borderline Personality Disorder is not untreatable. This is a myth and one we should get rid of ... Resources need to be fed into providing services for people with Borderline.

(Consumer, Victoria, Submission #203)

I have also been reading about Spectrum in Melbourne which is the State-wide Borderline Personality Disorder Service. It is so good that, at last, people are starting to put just a little money into people with Borderline.

(Consumer, Victoria, Submission #203)

Victoria has a statewide personality disorder service. This has come after a realisation that the State had to do something! It is very useful but it is insufficient. They cannot possibly cover all the need across the State. It would be like having one State-wide Schizophrenia service.

(Consumer, Advocate, Victoria, Submission #166)
6.2.11.4.8 Lack of involvement of carers

Despite Standard 11.4.9 acknowledging the involvement of carers ('There is a current individual care plan for each consumer, which is constructed and regularly reviewed with the consumer and, with the consumer's informed consent, their carers and is available to them'), carers repeatedly reported being excluded and feeling frustrated. Given the reported problems with access and limited services available in the community, practices which involve carers to assist with the delivery of care and achieve the best possible outcomes for consumers would both help recovery and protect many rights of people with mental illness.

If carers were listened to, and included in the treatment team, that would make a big difference, as we are the ones who know the patients, and can recognise changes in them, and want to protect them from doing something they would regret, or the family would regret.

(Carer, Mother, Victoria, Submission #211)

I feel that I must mention here that I am most definitely not a belligerent confrontationalist. I tend far more toward a process of conciliation and negotiation, but at the end of that conversation, I found myself shaking and began crying from sheer frustration, disbelief and unvoiced anger.

(Carer, Mother, Victoria, Submission #178)

I spoke to both of [X]'s doctors about this and my concern about an adverse reaction to the drug. This matter was not pursued, as far as I know, and [X] was started on Clozapine again. A few days after reaching full dose, [X] had a hypotensive attack with transient total hearing loss (never investigated).

(Carer, Mother, Victoria, Submission #206)

The most serious problem of these weeks was a lack of communication: (a) between [X] and her consulting psychiatrist, (b) between [X] and her psychiatric registrar, (c) between [X] and many of her nurses, (d) between her consultant psychiatrist and me. Despite my efforts to speak to him in person or on the phone, I was able to obtain only 15 minutes of his time.

(Carer, Mother, Victoria, Submission #206)

How can it possibly be acceptable that carers are not included in the treatment plans for the people for whom they care and are simply 'used' by the Mental Health System?

(Carer, Mother, Victoria, Submission #178)

During this time of trying to obtain help for my son, I received a phone call from someone from the clinic informing me that my son was discharged from the service. When I asked how this could be when it was on record that my son was most unwell and that I had been reporting this for some time, his answer was "That's how it is, there is nothing that you can do about it, but of course we will do something if and when he comes to our attention". In other words my bringing it to their attention was worthless, once again it would require my son behaving in such a way that would bring him to the attention of the police or perhaps something far worse happening.

(Carer, Mother, Victoria, Submission #178)

Knowing that by then my son would be intensely paranoid and delusional and from past experiences, would surely be considered to be 'at risk', I went to the clinic and asked that they intervene before he disappeared again and was told that the only thing that I could do was to provide them with 'proof' that my son was 'acutely unwell' and even then, they may not be able to do anything. I asked what 'proof' I could provide and it was suggested that I go to the neighbours and have them write letters attesting to the fact that they had concerns about my son. Only one neighbour was at home and she agreed to write a letter which I took to the clinic ... and I contacted the motel owner and explained the situation ... She asked whether it would be of any help if she rang the clinic and expressed her concerns. I said that perhaps that could initiate some action. She did so and eventually the police and a CAT team arrived and he was hospitalised.

(Carer, Mother, Victoria, Submission #178)

Listening to family would of helped in this instance for information on the patients history. It was as if no one knew from one Dr to the next the patient's history or situation and each started from scratch in the meantime the patient getting more frustrated confused and losing hope.

(Family member, Victoria, Submission #170)

...no matter what our background, confidence, insight, carers of the mentally ill are often not heard by the doctors and nurses of their children. If I could not make staff at the Alfred Hospital take into account my knowledge of [X]'s condition, how do carers who are not at ease with hospitals and medical personnel make their concerns known? We are the advocate for our sons and daughters, who are often unable or too fearful to speak for themselves. We ought to be listened to for we know those in our care ...We are ignored at the peril of our children's lives. And some of us are left standing helpless as we watch our sons and daughters die, one after another after another.

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

[T]he hundreds of carers who contact our Care Line, seek counselling or attend our education sessions continue to speak of being excluded from information and from involvement in care management discussions and decisions that are vital to their ongoing support of their ill relative, that person's recovery and wellbeing, and the carer/family's own safety and wellbeing.

(Carers Victoria, Victoria, Submission #270)

There is too little opportunity for collaboration between family carers and supported accommodation services, whereby the overall supervision and care could be significantly improved.

(Carer, Mother, Victoria Submission #320)

We, her family, are never asked for our input regarding medication despite now having far more experience, regarding what has helped and what has not, than a changing series of psychiatrists.

(Carer, Mother, Victoria, Submission #299)

...attitudes towards families generally within the system are very mixed. The impression one gets is that senior management are unsympathetic and find input from carers a nuisance - and too time consuming. The attitude seems to be that, if you are lucky enough to actually have a family, you are so far ahead of most consumers that you can look after yourself.

(Carer, Mother, Victoria, Submission #299)

Despite policies which recommend the involvement of carers and families in the treatment of consumers, there does not appear to be any systematic or consistent approach; it appears to be at best ad hoc and depend on the inclination of individual health professionals. The council is aware of widespread dissatisfaction with the lack of consultation of families and carers. Carers are often not consulted or informed about treatment plans or changes in treatment plans. Consumers are often discharged without notifying carers which can result in consumers being without planned accommodation and at risk. ... Involvement of the family or carers in treatment is more likely to provide a better outcome for the consumer and is more likely to keep the support environment for them in tact. (i.e. family / carers)

(Peninsula Carers Council, Victoria, Submission #321)
6.2.11.4.9 Lack of mental health services for the aged

Standard 11.4.3 ensures access to a 'comprehensive range of treatment and support services which are, wherever possible, specialised in regard to a person's age and stage of development'. However, concerns were raised with regard to the paucity of treatment and support available for this age group:

We are a group of community workers with a vast experience in their area of mental health and mental health and the ageing ... Since deinstitutionalisation occurred in the 1980s, we believe that the pendulum has swung to far in the other direction whereby a number of sufferers do not have options open to them if their illness is so severe that they are unable to sustain living in the community with medication only.

(Social Worker and Team Leader, Victoria, Submission #236)

I am writing to plead my case for more funding to allow people like my husband to have access to more care. He as been suffering Depression, Anxiety and Panic Disorder for three and half years and because he is aged there is no facilities for him as he isn't "Dementia" or "Alzheimer's". (author's emphasis)

(Carer, Wife, Victoria, Submission #248)
6.2.11.4.10 Consumers subject to the criminal justice system

Standard 11.4.7 states: 'The MHS ensures access to a comprehensive range of treatment and support services which are, wherever possible, specialised in regard to ... consumers who are subject to the criminal justice system'. Concern was expressed regarding the rising rate of people with mental illness being incarcerated and that for many of these people, access to treatment in prison was better than the treatment available in the community. Concern was also expressed regarding the variability of treatment available within the criminal justice system:

I am concerned that [X] had to go through the courts and the forensic system, in short, to be treated like a criminal, as the pathway to getting help for her mental illness. This is craziness. It is ironic that the forensic system ... actually treated [X] more compassionately and effectively than the community mental health service.

(Carer, Mother, Victoria, Submission #307)

It is an indictment on our society that it was only in prison that this young woman with serious mental illness was able to withdraw from heroin and begin her long journey back to health. She had some very helpful attention from the prison psychiatrist, and there were attempts to help her with drug rehabilitation, but the resources in this area were woefully inadequate. She lived in fear of some of the other inmates, and in general the prison experience left terrible scars.

(Carer, Mother, Victoria Submission #320)

Given the high number of inmates who are substance abusers, priority should be placed on drug rehabilitation in the prison.

(Carer, Mother, Victoria Submission #320)

A recent survey found that 60% of prison admissions have an active mental illness. In 2000-2001, the total recurrent cost of prisons in Victoria was $188.36 million. By contrast, only $69.53 million was spent on mental health. Ex-prisoners who return to prison point to the lack of appropriate housing as having been a key factor in their inability to reintegrate into the community. This problem is likely to be greater still for those with a mental illness. Small Non-Government Organisations provide the bulk of transitional services for ex-prisoners. ... The present deficit in appropriate housing and support highlighted above is likely to contribute to ongoing incarceration, which further traumatises people with a mental illness. The danger is that we as a community run the risk of using prisons as de facto asylums.

(The Network for Carers Of People With A Mental Illness, Victoria, Submission #319)

It is acknowledged that services for prisoners are generally limited. This unfortunately leads to a deficiency in treatment for those needing psychiatric care and support. The experience of prison also makes managing the illness more challenging.

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

We have been told that it is not uncommon for prisons to 'wetcell' prisoners to manage acute episodes. This practice of seclusion can go on for weeks under the supervision of unqualified staff, until the 'issue' has resolved. It is absurd that such primitive regimes continue when we have the knowledge and skills to treat people in humane and decent ways.

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

The increased number of people entering prison drug affected further exacerbates the difficulties associated with having a mental health problem and the ability of the prison system to manage their treatment appropriately.

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

During the past decade, there has been a 50% expansion in the Australian prison system yet those close to grassroots services argue that much of the recent increase in the Australian prison population can be explained by unmet mental health needs, subsequent illegal use of drugs as a form of self-medication, and the eventual intervention of the criminal justice system .

(The Network for Carers Of People With A Mental Illness, Victoria, Submission #319)
6.2.11.4.11 Lack of treatment and support available to consumers after release from prison

Concern was expressed regarding the lack of treatment and support services available for people with mental illness after they have been released from prison. One carer noted that her daughter had been refused care due to her past criminal episode:

Upon release from prison in early 2000 [X] was ready for a therapeutic community and was motivated to live a wholesome life. She needed to be sheltered from environments where illicit drugs were being used, and she needed a simplified life style where she could find support and purpose. She also needed supervision regarding her antipsychotic medication and reduction of other prescribed medication. She had missed her opportunity at one rehabilitation community, another refused her because of her mental illness, another said no because of her past criminal episode.

(Carer, Mother, Victoria Submission #320)

With no data being maintained about prisoners' post-release housing options, it is assumed that some ex-prisoners are accessing generic housing services through the Supported Accommodation Assistance Program. However, prisoners need to become homeless again before being able to apply for housing services. A small pilot of the Office of Housing and the Office of the Correctional Services Commissioner provides 61 transitional places for ex-prisoners in Victoria. This is a good start but in no way represents an adequate level of support for this population. The fact that Victoria is viewed as a leading model in this regard raises grave concerns about the level of services in other states.

(The Network for Carers Of People With A Mental Illness, Victoria, Submission #319)

When people are discharged either from forensic care or the prison system this can also have a major impact on services due to the complexities of the consumers needs.

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

6.2.11.4.A Community living

The MHS provides consumers with access to a range of treatment and support programs which maximise the consumer's quality of community living.

Under this Standard, submissions and presentations indicate concerns about:

  • the lack of support services in the community;
  • withdrawal of support from community mental health clinics;
  • need for more leisure, recreation, education and employment programs;
  • the need for self-care programs; and
  • lack of family centred approaches.
6.2.11.4.A.1 Lack of support services in community

If family members fail to support the one who is ill, and some have reached the stage where they are stressed out, burned out, then the situation is at crisis point.

(Carer, Mother, Victoria, Submission #242)

The aim of de-institutionalisation was to provide treatment and support in the least restrictive setting, which for most people means living in the community. However, as discussed above, the necessary treatment and support services and effective systems on the submissions provided does not appear to have not materialised. This is true for people with serious mental illness living in the community and also for people who, as a consequence of failure to access treatment and support services at the onset of illness, develop significant disability and require additional community support services to live independently or with their family. The impact of dependence on families and carers was also reported to be problematic with carers describing their own health as failing and that they are also being 'denied opportunities to lead rich and fulfilling lives':

The really sad thing is that people like my sister feel they are a burden on their families. There needs to be a place where they can go when they become unwell where they can get the care they need and the support they need. It's too late to wait until she is in a crisis for the system to respond to her - it's too late then! The support services that are in the community don't get the necessary increases in funding they need so they can't respond appropriately either.

(Carer, Victoria, Melbourne Forum #16)

The provision of HACC 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.

(Anonymous, Victoria, Morwell Forum #3)

My daughter was diagnosed with Schizophrenia about 10 years ago and has been on disability support pension for the last 5 years ... She lives with another girl who has Bipolar Disorder. She's a very smart girl who used to work for Telstra. I have been to the house where they live which is in not very nice as they spend all their money on the pokies, drink, taxi. I have turned up there when they have both been in crisis. They ring because they are hungry or they don't have any cigarettes.

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

...as the Victorian Auditor General's report shows, the CATT teams have become increasingly embattled and are all too often reluctant to assess and treat people comprehensively in their home and community environments.

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

Attempted suicides are assessed by a CAT team and then they go back into the community and often the environment they go back to is not a good environment - there's no support for them.

(Clinician, Victoria, Morwell Forum #11)

The second son is now 33. He has major depression and recently diagnosed Aspergers Syndrome. These difficulties contribute to his sudden explosions of anger and harm to himself and others. He has now been unemployed for 4 years but previously held a full-time job for 10 years. He has moved six times in the past three years, with short periods of homelessness. Private landlords will not rent to an unemployed person. He is paranoid, without social contacts or any reserve funds. He has presented on several occasions to public mental health services following these incidents and at other times. He is told that he has a mental illness, depression, he has Aspergers syndrome, he should learn to control his anger yet any referrals made to help with this anger turn out to be for people in relationships and he cannot form one, to use a private psychiatrist or GP. However he is not organised enough to keep appointments and often does not know what day of the week it is.

(Carers, Parents, Victoria, Submission #275)

Not only does the evidence support the contention that the system has failed, and continues to fail, people with mental illness, it also fails their families, who often have no option but to assume the role of full time care giver and custodian. They too are denied opportunities to lead rich and fulfilling lives.

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

When I asked for help he was taking medication inappropriately. ... We believe suffers of mental illness need access to: ... in the early stages of developing the illness, somewhere that medication can be supervised to the point of dispensing it on a daily basis

(Carers, Parents, Victoria, Submission #241)
6.2.11.4.A.2 Withdrawal of support from community mental health clinic

One carer described in detail how well her son was doing while on a community treatment order and receiving support from the mental health clinic. He was living independently and integrating very well socially. However, despite a ten year history of non-compliance, support was withdrawn and the consumer became increasing ill, angry and aggressive and was evicted from his apartment.

The past has proved that my son maintains a high standard of 'wellness' when he is on the once a fortnight Depo injection programme. He is gentle, 'easy going', law abiding and lives comfortably and independently within the community. He is meticulous in paying his rent and other living expenses. He maintains very good relationships with his family, friends and neighbours ... Despite his 10 year record of non-compliance, lack of insight into the illness, even strong indications of denial, after 12 months the CTO was removed and once again he was allowed to self-medicate. As in the past: He felt well therefore ceased medication. Rapidly became unwell. Ceased contact with me within weeks, as in his mind I then become part of the conspiracy against him and therefore he does not wish to see me. Became angry, belligerent and aggressive with the few people remaining in his life, ordering them off the property which he was renting. Became more and more reclusive. Eventually lived in virtual darkness and isolation only going out late at night for food when there were few people around ... serve an eviction notice as he had not been paying his rent ... a couple of elderly neighbours came and spoke to me. They were quite distressed (not for themselves, but for my son) and asked what was happening. I explained that my son had a mental illness, had suffered a relapse and that I had been unable to acquire treatment for him. They said that he had been a friendly, caring, helpful neighbour and that they had felt very safe with him there, but had become a little alarmed when he began abusing visitors, and that they had become increasingly concerned about his welfare but didn't know what they could do. A final comment from one of the elderly ladies was "We treat animals better than that" and from the other "How can this be allowed to happen? There is something terribly wrong when decent young people like your son end up in such a dreadful situation.

(Carer, Mother, Victoria, Submission #178)
6.2.11.4.A.3 Need for more leisure, recreation, education and employment programs

Australia's record of implementing systems which assist the person with a mental illness in entering, returning to or remaining in the workforce remains very poor. These people are denied opportunities of training/retraining and employment, with the result that they are denied opportunities to lead challenging and rewarding lives. Too often social isolation and unhealthy lifestyles remain the dominant features of someone who has a history of psychiatric disorder/illness.

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

Access to rehabilitation and day programs to meet the needs for leisure, recreation, education and employment (Standard 11.4.A.4) were also reported to be declining. Access to such programs are seen as critical for consumers to reintegrate and live in the community, with opportunities to participate socially and economically.

We need more housing, accommodation and day programs to support people in the community. But there's a real lack of willingness to provide these services.

(Consumer, Victoria, Footscray Forum #6)

And we'd like to put our ill relatives on to support groups for them, recreation such as the Clubhouses and other structured day programs, and find out how to help them get work. [Y] who was with the Fellowship, arranges the sort of employment people coping with mental illness need, and gives talks on "Why Work Works", because it does.

(Carer, Mother, Victoria, Submission #211)

My son has paranoid schizophrenia. He's on new medication and he's the best he has been for 20 years. He wants to work but we can't get any help.

(Carer, Mother, Ballarat, Victoria, Melbourne Forum #11)

There are specialist employment agencies here but no private mental health services to help people to assist them through their difficulties. In this area there's a real absence of people who can provide a good assessment.

(NGO Worker, Victoria, Morwell Forum #7)

I have seen some good outcomes where people with a mental illness get jobs but only a few. Mental Health services need to work more closely with employment agencies.

(Clinician, Victoria, Footscray Forum #5)

And we'd like to put our ill relatives on to support groups for them, recreation such as the Clubhouses and other structured day programs, and find out how to help them get work. [Y] who was with the Fellowship, arranges the sort of employment people coping with mental illness need, and gives talks on "Why Work Works", because it does.

(Carer, Mother, Victoria, Submission #211)

When I asked the case manager to help her daughter to get work she was told it was "early days". Employment situation is a nation-wide scandal.

(Part time Carer & on ARAFMI Board, Victoria, Melbourne Forum #6)

In the absence of any available rehabilitation in Victoria, we pleaded our case with the State Minister for Health, but he was not able to help. The solution was provided by another small and very caring Christian community in rural Victoria, where for two years [X] gained stability, confidence, work skills, and a variety of work and social experience in a beautiful setting. In July 2004 she moved to ... community in ... Tasmania ... where she continues to benefit from an extraordinary level of support and where she is for the first time engaged in a full-time course (TAFE certificate) and building hopes of eventual employment. Although she continues to have some mild symptoms of schizophrenia, she manages her own medication, she is happy, and she has friends. We have daily contact, and we are able to visit each other. It is now 18 months since she used any illicit drug. It is almost 8 years since she was diagnosed with schizophrenia. (author's emphasis)

(Carer, Mother, Victoria Submission #320)

There are inadequate rehabilitation services for consumers who are trying to rebuild their lives. People recovering from heart surgery are automatically given a place on a rehabilitation program and access to professional assistance such as dieticians. Unfortunately the same cannot be said of psychiatric rehabilitation. In Frankston, Impact Services provide a quality Psycho-social rehabilitation service but due to long waiting lists, many consumers are unable to access this much needed type of service. At best the PDRS (Psychiatric Disability & Rehabilitation Service) offers a few hours of rehab per week leaving the carer with the responsibility for over 100 hours for the rest of the week to the carer. Rehabilitation services and support programs are essential for people with a mental illness many of whom have become socially isolated.

(Peninsula Carers Council, Victoria, Submission #321)

[X[ is now part of the Centacare Housing and Rehabilitation program and currently has accommodation in one of their houses. He is on new medication "Seroquel" which has had an amazing affect on him. He is back to normal weight, sleeps normal hours and eating normally, but there are no suitable programs to relieve his boredom - not sufficient funding.

(Carers, Parents, Victoria, Submission #241)

Extra resources are needed to strengthen the commitment to both community-based services and to preventative care. Consumers in both Melbourne and regional areas also spoke of the need for increased access to drop-in and general support services:
. "My biggest frustration as a carer [in regional Victoria] is that there is no drop-in centre for the consumer -they need somewhere they can meet 4 or 5 days per week".
. "In this area there is only an outreach service ...there is no place for people to just drop in -for day programs or groups or just to talk with friends".

(BSL 2004 Focus groups with mental health consumers)

Consumers who were able to access a drop-in centre spoke highly of the benefits they obtained.

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

Many of the consumers had been working when they became unwell but often had lost their job, usually due to their illness, before they obtained a diagnosis. Getting back into work after a major illness was proving difficult for those who wanted to work. The exceptions to this were some people who said they had received good employment assistance from disability employment agencies.
. "I'm with ...and they got me a job. They are very supportive. I made a decision to tell them about my illness and they told my employer who is understanding and asks how I am going? Do I need any time off?"
. "Working can be tough sometimes but my job is like organising my own business. That's how it's been organised for me. There's really no supervision; I really just plan my own days; I'm quite able to leave when I want to which takes the pressure off. Working part time means I can keep working".

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

Rehabilitative programs that centre on consumers re-entering the workplace need to be made a priority within the mental health system. Programs do already exist, but they, like many services are limited by a lack of funding and high demand. To help alleviate the barriers that consumers face, there is a definite need for increased funding and support in this area.

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

There is no follow-up of medication or therapy to help people with a disability get back into society or become independent.

(Carer, Mother, Victoria, Submission #352)
6.2.11.4.A.4 Need for programs that teach self-care skills

Living skills and self care programs would enable consumers to live with dignity in society and are seen as critical. Standard 11.4.A.13 states: 'The MHS provides a range of treatment and support which maximises opportunities for consumers to live independently in their own accommodation' and 11.4.A.2 states: 'Self care programs or interventions provide sufficient scope and balance so that consumers develop or redevelop the necessary competence to meet their own everyday community living needs'.

A number of submissions and presentations pointed to a lack of availability of supported accommodation, many consumers been forced to return to live with their families. In many instances, this placed intolerable strain on families as they waited for places to become available. Additionally, the lack of self care and living skills programs meant that consumers were also not able to gain the necessary skills to live independently and move out. As indicated by one consumer, some people have not had opportunities in the past to learn these skills, and do not have family from which to learn or relearn these skills now.

I came from the institution. I lived there from 7-21. I wasn't trained how to dress or how to wash. I am now 39 and I'm still trying to get over all my fears and anxieties. You need a lot of care and support and there is not a lot of that around.

(Consumer, Victoria, Morwell Forum #9)
6.2.11.4.A.5 Lack of family centred approaches

As reported throughout this Report, concern was expressed about the incredible strain that has been placed on families as a result of an inability to access treatment and support at the earliest possible stage of onset of illness. For families, this was often further compounded by the lack of housing and accommodation options available for their family members.

Reports received also indicate a lack of family-centred approaches to treatment and support. Standard 11.4.A.12 states: 'The MHS ensures that the consumer and their family have access to a range of family-centred approaches to treatment and support'. Included in the notes to this standard are: family education regarding the relevant mental disorder(s), training in communication and problem solving skills, family counselling and ongoing support and contact with relevant support / self help groups. Further, Standard 11.4.A.11 states: 'The consumer has the opportunity to strengthen their valued relationships through the treatment and support effected by the MHS'.

The lack of access to other support services (e.g. respite, leisure, recreation, education, training, work, employment, respite, home and community care) also contributed to this strain for consumers and their families.

Secondly, government policy states that carers have a right to appropriate education and training in order to fulfil their role, and yet our research indicates that carer support, education and training lacks the funding to administer comprehensive, timely and targeted support for carers in all regions .

(The Network for Carers Of People With A Mental Illness, Victoria, Submission #319)

Further, I'm alarmed increasingly at the neglect of hard working carers (I have been one for 40 years). Please consider in practical ways of supporting these brave and loyal folks, a grand majority whose own health is suffering. I think respite care most urgently needs priority funding.

(Carer, Victoria, Submission #248)

6.2.11.4.B Supported accommodation

Supported accommodation is provided and/or supported in a manner which promotes choice, safety, and maximum possible quality of life for the consumer.

Submissions and presentations indicated concerns about:

  • lack of supported accommodation;
  • the need for interim (step-up and step down) accommodation for consumers;
  • the need for step-up and step down accommodation facilities for consumers with dual diagnosis (drug and alcohol); and
  • lack of supported accommodation options for people with mental illness and drug and alcohol problems.
6.2.11.4.B.1 Lack of supported accommodation

Fortunately I had met the psychiatrist on a number of occasions and knew him to be 'carer sensitive'. When he asked if my son could come home with me after discharge, I felt able to tell him that I had decided that the series of events leading up to this latest hospitalisation had driven me to a point where I was no longer prepared to be a part of this repetitive pattern. It was apparent that finding accommodation for him was going to be extremely difficult in the future due to the rental ramifications of this latest relapse and that as he wanted to be independent as much as I wanted that for him, I said that from now on I was placing the responsibility for his accommodation and rehabilitation upon the Mental Health System.

(Carer, Mother, Victoria, Submission #178)

As indicated by this carer, extra stresses and demands are being put on supported accommodation because the requisite support needed for people to live independently is not there. It was suggested that people who are able to live independently with support are seeking supported accommodation.

As noted previously in this Report (8.3 Integration), the lack of housing and accommodation options, and supported accommodation options in particular, for people with mental illness is of serious barrier to consumers attaining the 'maximum possible quality of life' and integrating and contributing to the community.

I'm [X]'s carer and I feel for myself to cope so soon is very scary, walking on egg shells, mentally and physically very draining experience. I feel I can no longer cope with him living at home due to this illness. Bit there is nowhere for him to live. It's all unavailable. I would not want him locked away in an institution. But where can people with a mental illness live. (author's emphasis)

(Carer, Mother, Victoria, Submission #310)

So much supported residential accommodation in Boroondara has been closed, and several of the residents have had to move away, which puts them out of contact with the Kew Regional Minister ... who works hard to help them feel part of a community, and runs a monthly service for them in Kew ... We would like to see more funding for supported residential accommodation throughout Boroondara.

(Carer, Mother, Victoria, Submission #211)

The provision of suitable housing and accommodation available within Australia is appalling ... When the large institutions were closed and patients moved into community care settings it allowed the Governments at all levels to neglect the accommodation for the mentally ill. They have taken this opportunity to neglect the provision of accommodation for the mentally ill with a zeal that they display in no other area of health care! We regret that this same level of enthusiasm is not evident in the area of service provision. Which level of government is responsible for housing? (author's emphasis)

(GP in rural Victoria, Victoria, Submission #123)

Because of decisions to direct Commonwealth housing dollars to subsidising private rental through rent assistance, there has been a significant decline in the possibility of a person with a mental illness accessing secure and affordable housing through the State public housing programs. Waiting lists for people meeting the criteria for homelessness (Segment 1) are upwards of two years in some areas and for accommodation with support (Segment 2) can be from two to three years. The waiting list for people requesting accommodation and support from our own agency continue to climb, with little prospect of our being able to offer accommodation.

(ARAFEMI Victoria, Victoria, Submission #230)

There is a critical lack of suitable accommodation for suffers of mental illness. Large numbers are homeless or living with family who struggle to cope with the burden.

(Carer, Mother, Victoria, Submission #299)

Huge deficit in supported accommodation options: People who have recently been discharged after an acute episode usually require intensive support from both clinical care and social support services. However, the reality is that upon discharge, many people with a mental illness enter crisis accommodation services, or end up in police lock-ups or on the street. The alternative of being housed by their family often leaves the family vulnerable to emotional, physical and financial disruptions. Pressure on resources in hospitals means that patients have been discharged from hospital too early, placing a further strain on the family. Sometimes violence, financial demands and other factors associated with people with a mental illness prevent families from accepting their relative into the home.

(The Network for Carers Of People With A Mental Illness, Victoria, Submission #319)

More housing and support options attached to people with a mental illness are urgently needed. 30 to 50% of those people in crisis accommodation and Supported Residential Services or boarding houses have significant mental health problems.

(The Network for Carers Of People With A Mental Illness, Victoria, Submission #319)

There is a lack of government funded long term supported housing for people who may not be able to live independently, or for people who may require supported housing long term before being able to sustain independent living

(Western Region Health Centre, Victoria, Submission #292)

There is a lack of different housing models available to meet individual needs based on gender, age, support needs, affordability etc.

(Western Region Health Centre, Victoria, Submission #292)

The shortage of accommodation options for people with long term support needs is the most pressing need observed by guardians and Community Visitors. Community Visitors are aware of people with mental illness living in accommodation where there is inadequate support for their needs and an inappropriate mix of residents. The stress inherent in these types of living environments heightens the potential risk of relapse into acute phases of mental illness and hence, more admissions to acute inpatient facilities. In the financial year 2003-04, OPA received several complaints from relatives of people in community care units being asked to move to alternate community living facilities that relatives believed could not provide the level of support required by their mentally ill family member. The lengthy delay in the establishment of the sub-acute beds announced in the 2002 budget is of serious concern to OPA. The 20 beds to be established in metropolitan Melbourne - 12 in Springvale and eight in Box Hill - are still not yet operational. However, Community Visitors have reported very favourably regarding the new 24-hour prevention and recovery unit in Shepparton which has eight beds and two day clients. Sixty-six clients have accessed the service since 22 September 2003, when the first participant was accepted.

(Office of the Public Advocate, Victoria, Submission #284)

There is a limited availability of specialist accommodation for people with a severe mental illness who require long term support. For example, few long term accommodation options outside of secure extended care exist for this group. The secure extended care that does exist is limited to hostels, nursing homes, or Thomas Embling Forensic Hospital. The specific long term care needs of people with mental illness assessed as having a 'low rehabilitation potential' are not being catered for by the service system. The Willows program in Beechworth is a successful example of an appropriate accommodation option that could be provided.

(Office of the Public Advocate, Victoria, Submission #284)

Supported housing, where available, is useful to some consumers but sharing with 3 or 4 other people can be difficult. There is, however, an insufficient supply of such housing that results in many people not receiving the support that would be beneficial to their wellbeing.

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

Rooming houses and Supported Residential Services (SRS) have become home to many people with a mental illness but such facilities are often ill equipped to provide the support many residents require. The Victorian Homeless Strategy (VHS) 2002 reported research which had found that 47 per cent of people living in crisis accommodation, SRS or boarding houses had significant mental health problem (VHS 2002, p6).

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

Assessing residents for relocations due to closures, WRHC staff identified a range of issues for the residents including:

. Lack of notice to residents for proper assessments of needs
. Shortage of accommodation options resulting in unsuitable relocations or people relocating out of area
. Residents losing contact with family and family being inadequately informed of closures and relocation plans
. Loss of residents' records
. Inadequate management and documentation of residents' financial affairs
. Poor health status of many residents; and
. Lack of access to specialist psychiatric treatment, including clinical review of medications

(Western Region Health Centre, Victoria, Submission #292)
6.2.11.4.B.2 The need for interim (step-up and step down) accommodation for consumers

Many submissions argued that a range of accommodation options were needed and that these needed to be flexible, for example, interim step-up and step-down facilities.

But there's nowhere to go when you get out of Flynn. There's no step-up or step-down care.

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

Over the 12 years that my daughter was ill there was only one period of peace of mind when my daughter was hospitalised in Sydney. There should be interim accommodation when people don't need hospitalisation.

(Carer, Mother, Victoria, Melbourne Forum #2)

Short term fully supported accommodation is needed to enable the development of living skills and rehabilitation back into the community. Families are often not best placed to provide such support - they are working to try to make ends meet.

(Carer, Mother, Victoria, Submission #299)

Critical to the stabilisation and recovery of consumers is the availability of a flexible range of accommodation options. There are currently an inadequate number and range of residential rehabilitation programs offered to people with a mental illness in Victoria. Most of these offer psychosocial rehabilitation to people usually over 1-2 years. Yet longer-term residential rehabilitation programs lasting up to 6 or 7 years are needed to properly address the issues of clients with complex and chronic issues.

(The Network for Carers Of People With A Mental Illness, Victoria, Submission #319)

Lack of suitable accommodation (i.e. lower level care) following a stay in hospital is urgently needed to help the consumer adjust back to a normal life. The gap between hospital and normal life can be difficult to handle, and is of critical concern given that many patients are discharged prematurely.

(Peninsula Carers Council, Victoria, Submission #321)

New 'step up/ step down' residential programs are being piloted, to prevent the need for admission to acute wards and facilitate discharge.

(SANE Australia, National, Submission #302)
6.2.11.4.B.3 Need for step-up, step down and long-term accommodation facilities for consumers with dual diagnosis (drug and alcohol)

Concern was also expressed regarding the need for specific accommodation facilities for consumers with complex needs (mental illness and drug and alcohol). Additionally it was suggested that in order to achieve the best possible outcomes of reintegration into the community for these consumers, such facilities should also provide access to rehabilitation programs.

A large proportion of our clients are chronically unwell and have little or no family support, and often have polysubstance abuse as well. They frequently live in crisis accommodation or boarding houses which add to their isolation, contact with drugs and increased sense of loneliness and hopelessness. We have let them down by no longer creating" asylum" ie, places of refuge, as we used to when we had large institutional psychiatric hospitals. I believe there will always be people with mental illness who need "asylum" in the caring sense of the world. Community care has let them down, there are so few CCU / Rehabilitation beds it is a joke! Just when someone is improving we tend to send them back to live alone, such is the pressure on beds in the system. I have always believed that we need a system that is midway between what we had when I trained and what we have now, somewhere permanent where those that will never be well or cope alone can feel safe, protected and have some gainful activities and be monitored for symptom change.

(Clinician, Victoria, Submission #201)

I self-medicated with heroin for about 4 years. I spent time in rehabilitation and detox as a voluntary and involuntary patient. The better rehabs are residential and longer term. There needs to be more step up / step down community housing as 9 -11 day stays as the average stay in hospital is not long enough for those people who are seriously ill and are trying to get back on their feet. They should also have strong peer support and active programs of group therapy, cooking, living skills - contrast that to a hospital ward and you are bored stupid - basically you are waiting for the drug trolley to come around and you just watch TV. Consumers like me with a dual diagnosis are just ping-ponged between services. We need to talk about the community of consumers helping each other. We also need to talk about the desperate need for and benefits of appropriate step-up and step-down facilities.

(Consumer, Victoria, Footscray Forum #7)
6.2.11.4.B.4 Lack of supported accommodation options for people with mental illness and drug and alcohol problems

Concern was expressed regarding the lack of longer term supported accommodation options for people with mental illness and drug and alcohol problems:

Longer term housing/small apartments in clusters where informal supervision and assistance can be provided are also needed. Almost none exist. We are providing independent accommodation for one daughter but she would benefit from nine to eighteen months in a facility where she could quit her drug dependencies and learn some living skills amongst others at various stages of recovery.

(Carer, Mother, Victoria, Submission #299)

His lack of self care and money management problems mean that his ability to live independently is severely impaired. I am very concerned about accommodation for him in the long term. I am very aware that accommodation for people with mental illness is in extreme short supply. However, because of his substance abuse he is ineligible for the limited amount that is available.

(Carer, Mother, Victoria, Submission #229)

There are particular difficulties for young people accessing supported housing when they have a dual diagnosis. Their support needs are greater than can be met by youth housing programs and they lose their housing. It is difficult to accommodate young people in some of the existing supported housing for people who have experienced mental health problems because of their drug usage and clash of life styles with older clients.

(ARAFEMI Victoria, Victoria, Submission #230)

An exhaustive search for appropriate supported accommodation was unsuccessful. [X] had too many obstacles--mental illness, some lapses into drug use, a criminal history, and finally one obstacle that should have been a strength: since she had caring parents who were prepared to continue as caregivers while she lived independently, her need was not considered to be great enough to qualify for assistance from a major service provider.

(Carer, Mother, Victoria Submission #320)

People with mental illness and other complex issues such as drug and/or alcohol usage or behavioural issues often cannot sustain tenancies due to conflict with neighbours in high density housing or lack of tolerance or understanding by housing services

(Western Region Health Centre, Victoria, Submission #292)

6.2.11.4.C Medication and other medical technologies

Medication and other medical technologies are provided in a manner which promotes choice, safety and maximum possible quality of life for the consumer.

Under this Standard, submissions and presentations indicate concerns about:

  • emphasis on medication:
  • the lack of opportunity to get a second opinion; and
  • changes to policy for consumers receiving maintenance ECT (Electro Convulsive Therapy) treatment.
6.2.11.4.C.1 Emphasis on medication

Concern was expressed that the major focus of treatment for mental illness is a reliance on medication without consideration for other necessary treatment and supports and overall well-being:

The ever-increasing reliance on medication to manage mental illness means there is an ever-increasing reliance on forcing people to take medication. As a result, involuntary orders have increased at the same time as people are crying out for treatment.

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

Currently the focus of treatment is predominantly on medication. People who suffer from a mental illness, not only need medication but assistance and support to help deal with their situation. As well as medication they need counselling to help them deal with the difficulties of having a mental illness.

(Peninsula Carers Council, Victoria, Submission #321)

Medication is often inappropriately tailored to the individual's needs and poorly monitored with distressing results. Mental Health Workers do not take sufficient notice of consumers in this regard. I have seen my daughter faint onto a thinly carpeted concrete floor as a result of low blood pressure induced by medication whilst a psychiatric nurse looked on impassively as if she was 'putting it on'. She was once medicated so heavily that her voice sank to an almost inaudible whisper for 36 hours. She has suffered severe involuntary protrusions of the tongue and I have seen her endure a 10 minute wait at the nurses station in full view of all the other patients before Cogentin was administered. Such experiences are frightening, especially given that her medication is administered involuntarily.

(Carer, Mother, Victoria, Submission #299)
6.2.11.4.C.2 Lack of opportunity to get a second opinion

Standard 11.4.C.12 states: 'the consumer's right to seek an opinion and/or treatment from another qualified person is acknowledged and facilitated and the MHS promotes continuity of care by working effectively with other service providers'. Due to the scarcity of services and difficulty in accessing those that exist, it was suggested that there is a lack of opportunity to get a second opinion.

A GP might prescribe you some medications or you might be referred to a psychologist on the public mental health services. GPs are now getting much more training so that's been helpful. But there's a real lack of opportunity to get a 2nd opinion - people need options.

(NGO worker, Victoria, Morwell Forum #7)
6.2.11.4.C.3 Difficulties in accessing maintenance ECT (Electro Convulsive Therapy) treatment

Concern was expressed regarding changes to policies and procedures in order to receive maintenance ECT and the negative impact this has had for one consumer in particular:

For this treatment to continue being successful it is essential that [X] receive regular maintenance ECTs. Although this was previously done at Dandenong for out patients, it is no longer the case. This means that [X] must book as an inpatient, taking a bed that could otherwise be used for someone else, or if no bed available, then her treatment is cancelled, as has happened with her last four sessions, which I am sure you would understand has had a negative affect on the benefits initially gained from her ongoing treatment. It is my understanding that outpatient maintenance ECTs are available at surrounding hospitals but we are "out of area", we and the many others who could benefit from this program are missing out.

(Carer, Husband, Victoria, Submission #348)

6.2.11.4.D Therapies

The consumer and consumer's family/carer have access to a range of safe and effective therapies

Under this Standard, submissions indicate concerns about lack of access to a range of accepted therapies.

6.2.11.4.D.1 Lack of access to a range of accepted therapies

According to Standard 11.4.D.2: 'The MHS provides access to a range of accepted therapies according to the needs of the consumer and their carers'. However, concern was expressed that there is an over reliance on medication and access to such therapies in the public mental health system is difficult. It was suggested that lack of access to therapies resulted in consumers not being able to recover appropriately and therefore often requiring re-admission.

Approx 50% of schizophrenia, bipolar and dual diagnosis sufferers are in a 'revolving door system', i.e. in and out of our overstretched and under-funded hospitals, receiving repeated diagnosis, medication, stabilisation, then out again until the pattern is repeated because there is no ongoing psychological counsel follow-up to assist with these patients' lack of insight and neuropsychological deficit.

(Anonymous, Victoria, Submission #216)

...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 ... 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.

(Anonymous, Victoria, Submission #216)

Supportive counselling after the event to talk through the trauma of hospitalisation and to discuss the side effects of medications is not offered although overseas research indicates it can help in developing insight.

(Carer, Mother, Victoria, Submission #299)

For our members access to low cost counselling would be invaluable to assist with their recovery. Anecdotally we have worked with members who report the benefits of using local community counselling services to resolve the underlying causes of issues.

(Service Provider, Victoria, Submission #266)

People with anxiety disorders and depression often have no idea how to access the services that are available. The majority of the people coming to see the psychologists at PADA have had their anxiety disorder for many years - usually between four and ten years. This is outrageous for conditions that respond well to CBT (Cognitive Behaviour Therapy).

(Clinical Service Provider, Victoria, Submission #268)

My wife suffers from depression and I took her to the regional mental health unit in Wodonga. An initial interview was conducted with 2 people from this unit and their only advice was 'go and see a private psychologist, we don't have the resources here to help'. This news was devastating as we cannot afford the treatment required in private practice, and this has now tainted my wife's view of any help possible.

(Carer, Husband, Victoria, Submission #119)

1. There are simply not enough specialist services for people with anxiety disorders and depression. 2. Most community health services provide some services for people with anxiety and depression, and are to be commended for doing so, however, are limited in the number of sessions that practitioners are able to provide, usually have long waiting lists and some smaller and/or regional CHS's do not have adequately qualified staff.

(Clinical Service Provider, Victoria, Submission #268)

6.2.11.4.E Inpatient care

The MHS ensures access to high quality, safe and comfortable inpatient care for consumers.

Under this Standard, submissions and presentations indicate concerns about:

  • death while an inpatient;
  • lack of beds;
  • transportation is not in the most respectful manner possible;
  • use of restraint; and
  • lack of communication with consumers (consumers not involved in treatment plan).
6.2.11.4.E.1 Death while an inpatient

Of most serious concern were reports of deaths of consumers while an inpatient and that hospitals did not provide safe settings or have adequate policies and procedures to ensure safety.

The patient remained in care at a local hospital until transfer could be given on the Tuesday. The patient took their life on the Friday ... Points of system failure. Unsecure safety watch. Not a high enough level of observation. Patient was not protected from harming themselves. It was not like the staff did not know the extent of the situation. Should of been in a secure ward or watched properly. The patient was calling out for help.

(Family member, Victoria, Submission #170)

There are matters concerning her care, and death while 'held in care' at the Alfred Hospital, which are of deep concern to me and my family ...

(Carer, Mother, Victoria, Submission #206)

15 March, 2002. She said [X] was being sent out on unaccompanied leave that night. When asked had she read my letter, she said "yes" and made no further comment. I told her, at some length, that [X] was acutely paranoid and believed that stalkers were at her flat. She listened, made no reply, and noted these serious matters in the file as 'allowed to ventilate' ... When asked six weeks later if she had informed Dr [Y] of my fears and [X]'s paranoia, [she] said no. I called the ward at 2pm to say that [X] might kill herself if sent out without me. [X] was sent out We stayed in contact by phone. She got through Friday night. 16 March. We were in contact by phone. [X] was not happy, but said she would stay. We spoke last at 8.30pm. At 11pm [X] jumped in front of a train and was killed instantly.

(Carer, Mother, Victoria, Submission #206)

The month after people are discharged is when people are at the highest risk. There are reports about people absconding from care to suicide - nobody is asking the question as to why people are absconding from care to kill themselves. Is being in care that intolerable for some people?

(Consumer Advocate, Victoria, VMIAC Consultation #18)
6.2.11.4.E.2 Lack of beds

The lack of available beds for acute care was also cited as a serious concern. As discussed previously, access to these beds for consumers in rural and regional areas was particularly problematical. Patients requiring admission were generally in desperate need of medical care, often life-saving medical care. It appears that the demand far exceeds the number of beds available which results in a whole series of other decisions which jeopardise the safety and rights of consumers including: non-admission and being returned 'home', admission and someone else who is still unwell is discharged to vacate a bed, lengthy waits in emergency departments and admission to other wards with the use of sedation or security guards.

Currently there is a catastrophic and cruel shortage of acute mental health beds in the state. I work in psychiatric triage, based in an Emergency Department and almost on a daily basis, my colleagues and I search for beds for people who have become acutely unwell and require hospitalisation. It is not uncommon for these people to have to wait 48 to 60 hours in the emergency department, amidst the noise and chaos of emergency, for a suitable bed. They are even unluckier if they require a High Dependency bed.

(Clinician, Victoria, Submission #201)

I have several patients who need long term acute care (1 per week) and you simply can't get that acute care. There are insufficient beds and insufficient government funding.

(Regional GP, Victoria, Morwell Forum #8)

... a metropolitan hospital in the outer Eastern suburbs of Melbourne. ... I am pleased and proud of our Emergency Department's advances in reducing the waiting time people with mental health issues experience before being seen by psychiatric staff ... I have, however, very severe personal, moral and professional concerns for a particular group of patients whom I think our system fails in every possible way. Our failure is unacceptable and wrong. It affects the most vulnerable group of people; the informal and involuntary patients who require an acute mental health admission and for whom there is no available psychiatric bed available. These people may be required to wait in the Emergency Department for a psychiatric bed for anywhere up to seven days, and in our region, we have experienced up to twelve severely ill people waiting for a bed at the same time. If these people were elderly, or waiting surgery for seven days in an Emergency Department, our community would not allow it; but we do, because these people are without a voice and often without a vote.

(Clinician, Victoria, Submission #223)

My job was created because of the large number of people waiting for beds. Talking about Human Rights and my job causes me a great deal of distress. We aren't able to respond in the way we need to be responding and this is clearly a resource issue. The DHS has done a lot of hard work to try to relieve the issue but it's not enough. It is not uncommon for me to spend up to 1.5 hours or more looking for beds when I could be providing care. It's because of this that I don't get sufficient time to devote to the people I was employed to help.

(Clinician, Victoria, Melbourne Forum #15)

The few who make it to an inpatient unit face the risk of premature discharge in order to 'free up' more beds for those in crisis awaiting admission. People are often discharged on the basis of who is the least risk rather than who is ready to return to their home.

(Health and Community Services Union, Victoria, Submission #220)

There are extended waiting times in Emergency Departments for Mental Health patients/clients, because there are limited beds; inpatient mental health services run above capacity most of the time. Deinstitutionalisation and mainstreaming have resulted in general hospitals having more contact with Mental Health patients/clients; Emergency Departments are the main access point for mental health emergencies. There is clear evidence that general hospital staff and systems are poorly equipped and resourced to provide mental health care to patients/clients with mental health concerns. The availability of meaningful assistance to general hospitals from mental health services varies dramatically. Psychiatric Emergency and Consultation-Liaison Psychiatry Services are inequitably distributed across the state and in many cases, virtually non-existent in country regions.

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

When we were finally seen by the Psychiatric Registrar he was very understanding and knew my son needed to be admitted. He went off to find him a trolley to sleep on until late morning after telling us that he had checked all Melbourne hospitals and discovered there was not one single bed vacant!

(Carer, Mother, Victoria, Submission #176)

The optimistic predictions of community care are dented by the continuing need for inpatient service and the paucity of beds. The inpatient units in the general hospitals are under pressure to deny admission and to discharge as quickly as possible.

(ARAFEMI Victoria, Victoria, Submission #230)

People report that it is increasingly difficult to get access to an in-patient bed and that the length of stay is not long enough to assist people to stablilise their mental health.

(Western Region Health Centre, Victoria, Submission #292)

I believe the public have a right to know about the dangerously inadequate psychiatric services currently available in Gippsland. As previously reported, people who are deemed in need of admission, & thus 24 hour care, are being cared for during the day in a highly stressed environment, where nurses are often General Nurses, inexperienced in psychiatric care. At time there has only been one Psychiatric Nurse on duty, responsible for supervising a nursing team, comprising some for whom it was their first experience in an acute psychiatric ward. It is not surprising that some of these nurses have refused to return. Because the number of patient being admitted is higher than the number of available beds, it is correct that patients are sent to motels and caravan parks to sleep. As you can imagine any psychiatric ward can be and often is a place where highly charged emotions are expressed. Imagine the added effect of overcrowding and at times fearful inexperienced staff. This is a recipe for tragedy waiting to occur.

(Anonymous, Victoria, Submission #312)
6.2.11.4.E.3 Transportation is not in the most respectful manner possible

Standard 11.4.3.E states: 'The MHS ensures that a consumer who requires involuntary admission is conveyed to hospital in the safest and most respectful manner possible'. Concern was expressed that being escorted in the back of police paddy wagons like a criminal is not in the most respectful manner possible.

Can anything be done to stop supposed very sick people being man-handled into paddy-wagons and taken off like criminals. The fear they go through plus the illness must be unbearable for them

(Carer, Victoria, Submission #199)

Most people come to our department in a police van.

(Clinician, Victoria, Melbourne Forum #15)
6.2.11.4.E.4 Use of restraints

Such practices would presumably not be accordance with Standard 11.4.E.1 which states: 'The MHS offers less restrictive alternatives to inpatient treatment and support provided that it adds value to the consumer's life and with consideration being given to the consumer's preference, demands on carers, availability of support and safety of those involved'. Excessive use of restraint, sedation and seclusion may infringe on many consumer rights, as described below. The unnecessary use of such practices is also problematical given the scarcity of early intervention and treatment options in the community setting, necessitating consumers to reach crisis point before access to treatment is allowed, and then they are 'punished'.

I also want to talk about shackling - ultimately the medical officers make the decisions about shackling. Most people come to our department in a police van.

(Clinician, Victoria, Melbourne Forum #15)

We made strong recommendations 15 years ago that seclusion practices should cease but they are still being perpetuated.

(Consumer Advocate, Victoria, VMIAC Consultation #10)

There are some good people in the system but there are practices like this still being perpetuated.

(Consumer Advocate, Victoria, VMIAC Consultation #11)

Whilst guidelines and practice suggest that seclusion should be a last resort measure and only occur when the patient is at risk absconding, or of harming themself or others, our feedback and in some instances direct observation is that it is a first resort. To be "grabbed" by up to six people, taken against your will to a room, stripped naked in some instances in the most insensitive way, injected and left in the room only to be observed through a window at 15 minutely intervals would be humiliating and traumatic for anyone. Yet, patients' reactions and in particular, their feelings about the above experience are largely ignored from a humanistic point of view. 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.

(VMIAC, Victoria, Submission #332)

The intensive care units were designed for small numbers and can only function if these numbers are kept low. In practice, they are overcrowded, highly stimulating and consequently characterised by restraint and over-medication.

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

More extreme forms of physical abuse include being strip-searched, locked up and isolated, physically restrained by ward staff or restraining devices such as shackles.

(Insane Australia, Victoria, Submission #232)

Further, nurses report that the workload results in their having no option but to adopt a custodial approach to patient care, rather than that of the development of therapeutic relationships. We learn of instances where restraint is used, with security guards and the police being called to emergency departments to restrain people who are acutely and severely unwell.

(Australian Nursing Federation (Vic Branch), Victoria, Submission #322)
6.2.11.4.E.5 Lack of communication with consumers - consumers not involved in treatment plan

One submission was received which described the events prior to the suicide of a family member. Included in the description were references to the consumers' growing agitation at not knowing what decisions had been made about treatment and lack of involvement in the care plan, about being 'left in the dark' and lack if continuity of care with treating doctors.

The patient remained in care at a local hospital until transfer could be given on the Tuesday. The patient took their life on the Friday ... Points of system failure ... No communication in the days of being at the hospital was given to the patient as to what decisions had been made about continuing treatment with the original Dr. Patient left in the dark and only wanted to know what they were deciding. A person in such a state should of been seen immediately. This patient needed professional help ASAP and apart from brief talks with prior program organiser (who is a Dr), the first treatment session was on the Friday morning, of the Friday night of taking their life. This was a new Dr the patient had not seen before. There are so many things that should of been better ...

(Family member, Victoria, Submission #170)

6.2.11.5 Planning for exit

Consumers are assisted to plan for their exit from the MHS to ensure that ongoing follow-up is available if required.

For healers and carers, the discharge of patients should depend on their health status, not upon the 'bed status'. My dear daughter [X], should have had, as her right as someone 'held in care', a secure, contained environment provided in which her condition could improve.

(Carer, Mother, Victoria, Submission #206)

Under this Standard, submissions and presentations indicate concerns about:

  • planning for exit on the basis of need to vacate beds;
  • exit plans not authorised by medical staff; and
  • inadequate planning prior to discharge.
6.2.11.5.1 Planning for exit on the basis of need to vacate beds

Concerns were expressed that discharge was not occurring to an agreed exit plan or health status of the consumer but rather according to the need to vacate beds for new admissions. Such exits could jeopardise the safety of the consumer, especially as entry is almost always on the basis of risk of actual self-harm, or harm to others, and frequently results in almost immediate readmission. According to Standard 11.5.2: 'The exit plan is reviewed in collaboration with the consumer, and with the consumer's informed consent, their carer's at each contact and as part of each review of the individual care plan'. Also, according to Standard 11.3.18, a review should be conducted when the consumer is going to exit the MHS, presumably to ensure that exit is occurring at and appropriate stage of the recovery process.

I was told by several people in [X]'s last week that beds had to be emptied before Easter, which was two weeks away.

(Carer, Mother, Victoria, Submission #206)

(Patient progress notes has entry 15/03/02) Dr [Y] unable to work towards definite discharge date due to unknown bed status.

(Carer, Mother, Victoria, Submission #206)

On 14 March [X] called me in a distressed state because Dr [Y] had said "you know, if someone sick comes in I can discharge you immediately. ([X] suicided 16 March)

(Carer, Mother, Victoria, Submission #206)

Patients admitted with a mental illness are often discharged before they have sufficiently recovered, due to pressure on hospital beds. This can place an unnecessary burden on carers, who are untrained but are forced to care for someone who is still unwell. This can also put the consumer at risk, and in particular risk of suicide.

(Peninsula Carers Council, Victoria, Submission #321)
6.2.11.5.2 Exit plans not authorised by medical staff

One carer reported the events leading to the discharge of her daughter which preceded her death. Concern was expressed by the mother that the exit plan was not authorised by medical staff.

The 'Plan' has all the professionalism of something written hastily on the back of an envelope, and the interpolations do nothing to add to its seeming lack of serious purpose. Upon such a clearly non-planned document rested my daughter's life, for, once it was written and filed, it seemed to acquire some inexorable life of its own; Wednesday's unsuccessful leave must be ignored, the 'Plan' must be adhered to, [X] must be sent to her flat alone. In the 'Root Cause Analysis (a document required by the Department of Human Services after the death of a patient) it was documented "A leave plan was documented in the file by the community case manager on 15 March", which is subsequently referred to by inpatient nursing staff, but this does not appear to have been finally approved by the medical staff. A discharge plan written by the case manager is on a plain sheet of paper neither signed nor dated. Responsibility for both appears to have been delegated to the community case manager ... There is a reasonable amount of information in the file regarding the patient's care and her mother's concerns but it is not clear how this information was communicated to the treating team. The file does not give a sense of how this information was put together to form a clinical opinion and there is no evidence of a summary of her progress which may have highlighted these issues.

(Carer, Mother, Victoria, Submission #206)
6.1.11.5.3 Discharge without adequate planning prior to discharge

One submission raised serious concerns about the inadequacy of discharge plans, and that sometimes they are not even instigated. Specifically, the allegation suggests that discharge plans have not been developed in collaboration with the consumer (Standard 11.5.2), that understandable information about the range of relevant services and supports has not been provided (Standard 11.5.4) and that consumers have not established contact with the service providers prior to exit (Standard 11.5.6).

"The first time I was in hospital -on the day I was to be discharged and I didn't know it was going to be that day -I was given a sheet of paper with a list of boarding houses on it and told to find myself a place to stay because I was going to be discharged that afternoon. I lived under a train station for 2 weeks until I found somewhere to stay. I had just spent 8 weeks in hospital getting better and then they say you have to get out and they don't care where you go. They told me I could come back on Monday if I needed to". (BSL 2004 Focus groups with mental health consumers)

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

Again a shortage of staff - nursing, medical and allied health - may result in inadequate discharge planning and follow up in the community.

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

Patients admitted with a mental illness are often discharged without establishing whether they have appropriate accommodation arranged. This can mean that carers are unprepared for their loved one to return home, or that their loved one literally has nowhere to go.

(Peninsula Carers Council, Victoria, Submission #321)

6.2.11.6 Exit and re-entry

The MHS assists consumers to exit the service and ensures re-entry according to the consumer's needs.

Under this Standard, submissions and presentations indicate concerns about:

  • death soon after discharge;
  • lack of involvement of carers on exit; and
  • lack of engagement with consumer after exiting inpatient care and no review of arrangements prior to exit.
6.2.11.6.1 Death soon after discharge

Concern was expressed regarding the inappropriate discharge of consumers when they were still unwell. Such concerns were reinforced by the reports below from carers whose sons and daughters were discharged and committed suicide soon after exit.

His family, who all work, and his doctor, were effectively excluded. When we asked about making arrangements for supported accommodation, in preparation for his discharge, we were told "There will be another meeting later. There will be plenty of time before it's needed." There was no such meeting. ... [X]'s doctor & family ignored. Worse, we were not informed that his bupromorphin had been stopped. It had been prescribed to protect him from heroin. The meeting that we were told would be arranged did not happen. Just a phone call during dinner one night, to say he was being released into the care of the girl who'd been visiting him. No time was allowed to make plans for supported accommodation, of which we'd found three. [X] had already indicated earlier, he was interested in going back to the Arc House. [X] was released just before the Easter break, into the care of the person who he said had "latched" onto him. No urine tests were done to establish his status as an addict, even though on the phone I was told they would do this. I had requested it. He came to me, desperate to get back onto the bupromorphin. He was in withdrawal. I phoned Dr. [Z], who was going on holidays, but said he'd wait for us. He was extremely angry at the hospital! [X] told him he'd been using while in the hospital. He said he'd been set back 8 years. Dealers had got to him in the psych ward. That was the last time I saw my son. ... He was found dead ten days later.

(Carer, Mother, Victoria, Submission #353)

12 months ago I buried my partner after he successfully suicided. He had received treatment from this service, and received ECT therapy. He was also a private patient of the psychiatrist in Shepparton. He took him off his medication, just after the treatment finished. In another couple of weeks he had completed suicide.

(Carer, Partner, Victoria, Submission #127)
6.2.11.6.2 Lack of involvement of carers on exit

Carers expressed frustration that they were not notified of the consumer's discharge from the MHS, especially as they were expected to assume responsibility of care upon exit from the MHS. This left carers with feelings of extreme stress and fear for the safety of their family member with mental illness:

Parents sometimes ring the Helpline and say their son has been let out of hospital, but they weren't told, and they can't find him.

(Carer, Mother, Victoria, Submission #211)

At the meeting the head psychiatrist apologised for the misunderstanding and acknowledged the potential risks which were involved and when I said that as a carer, I believed that I have the right, even if not under the legislation but simply as a human being, to be given information about important issues which strongly impact on my own personal health and wellbeing, my son's new psychiatrist said "Well, I'm telling you that you that you certainly do not have that right."

(Carer, Mother, Victoria, Submission #178)

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 ...

(Carer, Mother, Victoria, Submission #178)

Patients admitted with a mental illness are often discharged without notifying carers. If the consumer is hostile towards the carer (perhaps due to involuntary hospitalization); this can put the carer in a difficult situation and sometimes even at risk.

(Peninsula Carers Council, Victoria, Submission #321)
6.2.11.6.3 Lack of engagement with consumer after discharge and no review of arrangements prior to discharge

One carer commented that although an arrangement had been made for the dispensing of medication, there was no other contact from the mental health service after discharge from an acute admission to ensure the health and safety of the consumer. This was particularly problematic because the consumer had no accommodation arrangements on exit. Another carer expressed concern that no attempts had been made to re-engage with a consumer who did not keep the planned follow-up arrangements as required by Standard 11.6.4:

For the entire month that he was with me I saw no signs of 'organisational skills' whatsoever, he was virtually totally dependant on me, and until he 'turned up' for his injection no one from the hospital or clinic knew where or how he was.

(Carer, Mother, Victoria, Submission #178)

The case workers don't come out and see you if you don't keep your appointments.

(Carer, Victoria, Footscray Forum #1)

Another carer expressed concern that accommodation arrangements for her son had not been reviewed prior to discharge from hospital care. According to Standard 11.6.1: 'staff review the outcomes of treatment and support as well as ongoing follow-up arrangements for each consumer prior to their exit from the mental health service'.

I requested that I be notified of his discharge, partly as I was storing his belongings and the psychiatrist agreed ... When I rang the hospital at 3 o'clock one afternoon on a bitterly cold, wet winter's day to inquire after my son ... doctor and she informed me that he had been discharged that morning ... I asked what type of accommodation had been organised and she brightly said "Oh, he organised it himself which is wonderful because it shows that his organisational skills are returning." I asked whether the accommodation he had organised was furnished as I was storing his belongings. She said "I can't possibly tell you anything about his accommodation, you will have to contact his case manager and he will let you know what and if anything is required." It was dark by 5:30 that afternoon and at 6 o'clock there was a knock on my front door. It was my son. At first I was alarmed because I thought he was there for a confrontation as has happened before. He had a very bad head cold, was cold, wet, exhausted and looked absolutely dreadful. He said "Mum, can I come home for a couple of nights, I've been driving around since early this morning trying to get into a caravan park?"

(Carer, Mother, Victoria, Submission #178)

Each time I have been hospitalised "no" follow-ups have occurred. You have to wait until you can "acquire" an appointment at the clinic. This can be 2-4 weeks later.

(Consumer, Victoria, Submission #112)

6.2.12 STORIES OF HOMICIDE AND SUICIDE IN VICTORIA

...several members of my suicide support group are convinced that the suicide wouldn't have happened if they'd been listened to, contacted, if there'd been adequate funding for emergency beds.

(Carer, Mother, Victoria , Submission #211)

My sister [X] was diagnosed with Bi-polar Disorder after the death of our father. Just in January this year my sister tried to take her own life. The system does not take people unless they are really in crisis. My sister was turned away from care when she really needed it. My sister came to my place for help and I told her and the service that if anything happened to her I would hold the service responsible. She was then admitted. After [X] came home from hospital she was working at the local school helping kids to read. She came to our place and she kept telling us that she didn't feel well. She took her life in June and I found her dead at home. The really sad thing is that people like my sister feel they are a burden on their families. There needs to be a place where they can go when they become unwell where they can get the care they need and the support they need. It's too late to wait until she is in a crisis for the system to respond to her - it's too late then! The support services that are in the community don't get the necessary increases in funding they need so they can't respond appropriately either.

(Carer, Victoria , Melbourne Forum #16)

My sister had suffered with bi polar disorder for 30 years ... Sadly she took her life on 18 th June 2004. On that day I was going to take her shopping but she didn't feel well. She said to me what about Psychiatric Services. But she always presented so well when they interviewed her that I knew they wouldn't take her in, so I took her home. She said she felt better just talking to me on the way over to our place. And many times over the years I would bring her home for a few days or a week to help her get over her depression. The next day I was going to be home at 2:00pm from work. That morning she took her life. What a waste of life. If only the system had a more open door policy. I wouldn't feel so guilty for leaving her that day.

(Carer, Sister, Victoria , Submission #286)

I believe my daughter killed herself two years ago while an involuntary patient at the Alfred Hospital Melbourne . I believe that there were grave breaches of duty if care at that place and that her human rights were abused because the clinicians ignored me, the one person she told her deepest fears to. 15 March, 2002. She said [X] was being sent out on unaccompanied leave that night. When asked had she read my letter, she said "yes" and made no further comment. I told her, at some length, that [X] was acutely paranoid and believed that stalkers were at her flat. She listened, made no reply, and noted these serious matters in the file as 'allowed to ventilate' ... When asked six weeks later if she had informed Dr [Y] of my fears and [X]'s paranoia, [she] said no. I called the ward at 2pm to say that [X] might kill herself if sent out without me. [X] was sent out. We stayed in contact by phone. She got though Friday night. 16 March. We were in contact by phone. [X] was not happy, but said she would stay. We spoke last at 8.30pm. At 11pm [X] jumped in front of a train and was killed instantly.

(Carer, Mother, Victoria , Submission #206) 

I have experienced the mental health care system indirectly. A family member had ill mental health. The family were desperate to get help as protection of the family members safety was beyond our reach. The treatment resulted in suicide. The suicide occurred at the institute where mental health care was being given. The patient went to the institute asking for help. They had been having counselling months prior. The counselling was due to end and the patient was not stable to be ending but the program did not allow for this so arrangements were to be made to continue but with different Dr's. This was like starting again for the patient. The patient returned home. Evident to the staff that the patient had suggested suicide. The patient returned home and attempted suicide. From here the patient returned now to the hospital of the institute. The event at home was on a Sunday. The patient remained in care at a local hospital until transfer could be given on the Tuesday. The patient took their life on the Friday.

(Family member, Victoria, Submission #170)

12 months ago I buried my partner after he successfully suicided. He had received treatment from this service, and received ECT therapy. He was also a private patient of the psychiatrist in Shepparton. He took him off his medication, just after the treatment finished. In another couple of weeks he had completed suicide.

(Carer, Partner, Victoria , Submission #127)

[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)

His family, who all work, and his doctor, were effectively excluded. When we asked about making arrangements for supported accommodation, in preparation for his discharge, we were told "There will be another meeting later. There will be plenty of time before it's needed." There was no such meeting. ... [X]'s doctor & family ignored. Worse, we were not informed that his bupromorphin had been stopped. It had been prescribed to protect him from heroin. The meeting that we were told would be arranged did not happen. Just a phone call during dinner one night, to say he was being released into the care of the girl who'd been visiting him. No time was allowed to make plans for supported accommodation, of which we'd found three. [X] had already indicated earlier, he was interested in going back to the Arc House. [X] was released just before the Easter break, into the care of the person who he said had "latched" onto him. No urine tests were done to establish his status as an addict, even though on the phone I was told they would do this. I had requested it. He came to me, desperate to get back onto the bupromorphin. He was in withdrawal. I phoned Dr. [Z], who was going on holidays, but said he'd wait for us. He was extremely angry at the hospital! [X] told him he'd been using while in the hospital. He said he'd been set back 8 years. Dealers had got to him in the psych ward. That was the last time I saw my son. ... He was found dead ten days later.

(Carer, Mother, Victoria , Submission #353)

  1. http://www.work.asn.au/disability/people/index.cfm, 31 March 2004
© Mental Health Council of Australia 2005. Last updated 29 August 2005. Email: admin@mhca.com.au