Forum Report. Mental Health Week Understanding Carers Rights Forum. Leading change and action with, and for, mental health carers

Transcription

1 Leading change and action with, and for, mental health carers Mental Health Week 2013 Understanding Carers Rights Forum pm, Wednesday 9 October 2013 Quality Hotel Woden Forum Report 1

2 Introduction The Understanding Carers Rights forum was organised directly in response to recommendations made by carers who attended a Mental Health Carers Forum held in June The October forum was held during Mental Health Week, and the costs were partially reimbursed by the Mental Health Week Committee (and funded by ACT Health). The aims and objectives of the forum were to: equip carers with knowledge and tools for understanding their rights in a complex mental health system provide participants with practical tools and strategies that will be empowering as well as assist them in their role of caring for someone with mental health issues. The forum attracted 66 participants. Presentations Janet Milford Janet has been the ACT Carer Representative on the National Mental Health Consumer and Carer Forum (NMHCCF) since December She is passionate about advocating for reform of the mental health system to make the quality of life better for those with a mental illness, those who care for them and their families. She has been a member of Carers ACT for approximately twenty years and has been dealing with the mental health system for eight years. During her career she gained an insight into those dealing with the traumas and resulting mental health issues from war and other crises. Janet gave an overview of the role of the National Mental Health Consumer and Carer Forum (NMHCCF). Janet is on the NMHCCF working groups on Rights, Disability and Mental Health and Psychosocial Disability. Carers and families are often overlooked not only in their supportive caring role but also on the impact that supporting someone with a mental illness has on their lives. Mental illness has a ripple effect from the person with the illness outwards to the whole of society. Society therefore has a responsibility to provide a more inclusive, supportive environment to assist those with mental illness, their carers and families to achieve a better quality of life. As the ACT s carer representative, Janet values carer feedback and input to take back to the NMHCCF. She invited ACT carers to bring any issues to the Forum s attention. The NMHCCF is eager to hear from mental health consumers and carers across Australia, bearing in mind that NMHCCF focuses on national issues. Janet s is: NationalMH@carersact.org.au. Please call the Mental Health Carers Voice program on if you would like to speak with Janet by phone. For more information about the 2

3 NMHCCF, visit: This is a useful research tool for carers, and carers may also send any comments or queries via the website. Ron Cahill Ron has an extensive legal background. Between 1977 and 2009 he was Magistrate, Chief Magistrate and Coroner. He has been the Chair of the Richmond Fellowship (ACT) since Between 1991 and 2009 he set up and then chaired the Mental Health Tribunal and the Guardianship & Management of Property Tribunal. He is Patron of Carers ACT and Diabetes ACT and is Chair of the Australian Institute of Sport s ethics and research committee; a role he has held since Ron talked about human rights, privacy, and the value to agencies of including families and carers at particular points when people enter the mental health and the criminal justice systems. He believes that information from families is critical. Ron hopes that carers rights will be given a higher priority in the new ACT mental health legislation (2014), reflective of a national move. Ron gave an example of why carers should be consulted during the assessment phase. As ACT Coroner he presided over Bob Beatty s inquest. Bob was a mental health consumer who became unwell and was hospitalised in the lead up to Easter. He suicided in the psychiatric inpatient unit on Good Friday. It was very sad that the staff had not sought information from the carer when the person was hospitalised: Bob s mother had died during Easter, and the partner was aware that he became very depressed and therefore vulnerable during this holiday period. Ron iterated the importance of having a documented treatment plan that: includes families and friends people are accountable to, and sets out responsibilities. He added that carers should be informed of how to make complaints. Ron noted that consumers who are experiencing a psychotic episode may not always be able to provide reliable information about their wishes. Input from carers can be very helpful, at various points. Carers are part of the support system for people living with mental illness, and have information that should be harnessed by agencies: In the mental health system clinicians and psychiatrists are bound by medical privilege not to release information. However, background information from family, friend and/or carer can help during the assessment stage. The ACT Civil and Administrative Tribunal receives applications for mental health care and treatment orders. The carer may play an important role in the development of treatment plans are carers involved in this process? Unfortunately, people with mental illness can come into contact with the criminal justice system. Families should be involved in matters that come before the Police, the 3

4 Director of Public Prosecutions, and the Courts. The information and support provided by carers are critical and may impact on how the matter proceeds. Anita Phillips Anita Phillips has been the ACT Public Advocate for eight years. People suffering from a mental health condition constitute the largest group of clients for whom the Public Advocate provides advocacy. This service is made available especially for people who are subjected to a Mental Health Order that imposes involuntary treatment, because such people are the most likely to have their rights compromised. Anita began her professional career after graduating as a social worker in Melbourne over 40 years ago, and she has worked in acute and rehabilitation hospitals, community health centres, Federal, State and Local governments the length and breadth of the East coast of Australia. Anita spoke about the role of the Public Advocate: Guardianship Advocacy for clients whose rights have been withdrawn, for example, when people are placed on mental health care and treatment orders. Most referrals to the Public Advocate are from consumers, usually from inpatient facilities. A Senior Mental Health Advocate visits the Adult Mental Health Unit at Canberra Hospital every Tuesday. The Public Advocate may be involved in: explaining the system providing information assisting in communications listening to concerns and assisting in their resolution protecting consumer rights, and enhancing consumer self-empowerment. The Public Advocate is aware that sometimes carers do not even know where the person is, and the impact this has on families. Anita noted that privacy legislation prevents information sharing. This is to protect the integrity of the consumer, who may not want people becoming involved. Her first responsibility is to the consumer, but staff also work with consumers to persuade them to talk with their carers. The Office of the Public Advocate also helps carers by: suggesting who might be an appropriate person to talk to contributing to understandings of how the mental health system works, including the ACT Civil and Administrative Tribunal, and mental health treatment and care orders explaining when carers may become involved and their rights in attending and contributing to hearings. The most valuable tool - when a person is well - is to communicate with the consumer to set up access pathways for when they become unwell, which will allow carers to receive information and participate in the care and planning process, e.g. Enduring Powers of 4

5 Attorney, Advanced Care Plans and a Treatment Plan (this must be accepted by treating medical staff). These are legal documents which must be accepted by the treating team/psychiatrist. Anita informed participants that while Guardianship Orders provide guardians with the authority to become involved in care and treatment, they do not give guardians the authority to consent to psychiatric treatment. Carers are welcome to raise any issues or concerns with the Public Advocate who meets with the Director-General of Health and the Minister for Health on a regular basis. Anita reminded the audience that carers also have a powerful voice through Carers ACT and Carers Australia. Danielle Nagle Danielle is the Acting Operational Director, Justice Health Services in ACT Health. She is a mental health nurse by trade and has been working in Mental Health in Queensland and the ACT since She has worked in inpatient units, both public and private. She has worked in community mental health and has been the Team Leader of adult community mental health teams and the Older Person community mental health team. She is currently the project officer for the Secure Mental Health Unit Model of Care. Dannielle acknowledged the grey areas of privacy and confidentiality. She also reiterated that person-centred care means the involvement of carers. Dannielle believes the voice of carers is strengthening, and the tide is turning. She noted that Carers ACT runs monthly information sessions for carers in the Adult Mental Health Unit, Canberra Hospital; and reminded the audience that there are also a range of resources for carers in the Unit s Family Room. Carolyn Sakkara Carolyn is a Youth Nurse with Justice Health Services. She works with year olds. She has been a Youth Nurse for nine years. She has experience working with both government and non government services. She has been a carer and so brings multiple perspectives to her role. All clients at Bimberi Youth Justice Centre have a Care Plan, Discharge and Transition Plan. There is a declared care team, and the young person nominates the team members. This can include the carer. The Plan (in summary) is given to carers. Carolyn talked about the importance of gaining clients trust. Carolyn has worked with clients who have no trust or who have lost trust. It is important that clients have confidence that certain information they provide will not be divulged. Carolyn recognises that there is a fine line between confidentiality and helping. Related to this, she also acknowledged that health staff have only limited time with their clients, and that families, friends and carers provide the main supports. While she reassures her clients that private information will not be shared, she also asks them: 5

6 Who can we share information with? What information can we share? This understanding of privacy and information sharing is the direction, Carolyn believes, health services are heading towards. Ben Ilsley Ben Ilsley is a Policy Adviser at Carers Victoria. He has worked in the social welfare and health sectors for almost 20 years and is passionate about social policy and social justice. He has had previous jobs in the psychiatric disability support sector, as a counsellor in the community health sector and as a policy officer for VICSERV, the peak body for Psychiatric Disability Rehabilitation and Support Services. As a member of Carers Victoria s policy team, Ben s main areas of responsibility are mental health, income support, young carers, carers and employment, and housing. He is the author of the recently released Carers Victoria report, Invisible Care: Access to Carer Payment and Carer Allowance by carers of a person with a mental illness. The report showed that Carer Allowance and Carer Payment are important supports because carers of a person with a mental illness experience significant levels of financial hardship due to additional costs and reduced earnings. It also found that the payments have great symbolic value. But many carers feel misunderstood, invisible, exhausted, burnt out and traumatised. They also experience the stigma of mental illness. As a consequence, the research study undertaken by Carers Victoria found that a significant number of mental health carers do not apply for these Centrelink benefits because they feel embarrassed, ashamed, and find the application process too difficult as the form does not seem to reflect the caring role of mental health carers. In addition, not everyone identifies as a carer, particularly women, for who caring is just something that they do. Ben gave the audience some tips for applying for Carers Payment or Carers Allowance: Attitudinal, e.g. do not be put off by the length and design of the form; do believe that you deserve financial support and recognition Equip yourself with good information, e.g. Guide to Social Security Law, and use the Invisible Care report Read the small print, especially in the Day to Day living sections of the forms Take a copy of your forms Ask for detailed feedback about why you were unsuccessful Make any necessary changes and re-apply if appropriate. Click here to find out more tips and suggestions from Ben, as well as information about the findings of this groundbreaking research study. 6

7 Sue Telford Sue presented from the perspective of a carer. She had a career in the healthcare and welfare sector, balancing work and family life with the very demanding role of caring for a child with chronic mental illness. She is now enjoying her retirement, is a strong voice for carers who want to find happiness and contentment in their caring role while accepting their loved one with enduring mental illness as they are. She seeks to have clinicians, workers and NGOs appreciate better the importance of keeping families together - without compromising the rights of the consumer. Sue spoke about her journey of recovery. Why is recovery important? Because Sue s life had changed forever. Recovery began in her head and, while the grief never goes away, she now practices her recovery every day. One day at a time. On this personal recovery journey Sue has discovered: that mental illness is a no blame illness it is her family member s journey, not hers that carers have a right to be happy related to the above, tough love: that is, not trying to fix the problem acceptance and courage to practice being grateful every day self-care through her carer support group, and through a range of health and wellbeing therapies. Carers, she told the audience, are the forgotten support workers, the hub of the wheel of supports. She spoke of her family s involvement with the treating team. Conferencing was empowering for the family member with mental illness, it was also inclusive of the family. Sue talked about confidentiality. Listening to carers does not breach confidentiality. She urged service providers to ask what they can do to help mend rather than to divide families. Sue believes that consent to information sharing is not a black or white issue, but needs to be unpacked by asking the consumer a range of questions starting with - Who is your family and/or support team? What kinds of things would you like me to discuss with them? How involved would you like your family to be? These kinds of questions can be asked while respecting the consumer s confidentiality. Concluding comments Forum participants engaged in a lively conversation with the Panellists. A community leader from a group of 12 Vietnamese carers who attended the forum talked about the barriers that her community faced in accessing mental health services; the need for more translated resources; and the challenges for carers signing mental health related documents in a language they are not literate in. The community leader asked that Carers ACT and the Panellists consider holding a forum specifically for the Vietnamese community. Carers ACT is considering this feedback. 7

8 Dee McGrath, Chief Executive Officer of Carers ACT, also announced that a resource for mental health carers will be developed and launched in the first half of This resource will provide carers with: clear guidance on when and how they can be involved in the care and treatment of their family member or friend confidence and clarity around their rights in negotiating ACT Health mental health services. Carers who are interested in being involved in the project are invited to contact Doris Kordes, Mental Health Carers Voice Policy Officer, on (02) or Doris.Kordes@carersact.org.au. 8