‘Odyssey of Hope’: The role of carers in mental health tribunal processes and systems of mental health care

Abstract

This article examines carers' involvement in the interconnected processes of mental health care planning and mental health tribunal hearings, decision-making processes which often dramatically impact on carer–service-user relationships and effectively impose obligations on some carers to assist in implementing legally binding orders. It explores concerns expressed by carers about difficulties accessing information about, and contributing to, these processes, and identifies associated dilemmas and conflicts. Whilst carer involvement may not be appropriate in all cases, the article concludes that carers should be better engaged at the service delivery level from the first point of contact and on an ongoing basis. It argues that a more consistent approach which assists and encourages carer participation in tribunal processes should be adopted. It also suggests that there is a need for additional processes and efforts to deal with conflicts arising between service-users, carers, and health services in the mental health context.

Key words:

• carers
• involuntary mental health treatment
• mental health care
• mental health tribunals

Notes

 1. A phrase used by Anne Deveson in her book Tell Me I'm Here, which recounts the journey that she and her family took with her son who was diagnosed with schizophrenia. The ‘odyssey of hope’ is one where a carer is searching for what they think is best for the person who is distressed, disoriented or disconnected. The hope can be for a cure, for protection, for safety, for peace – as well as understanding and support: Anne Deveson, Tell Me I'm Here (Penguin, Ringwood 1998) 101.

 2. This is a revised version of a paper presented at Families in Law: Investigation, Intervention and Protection, 29th Annual ANZAPPL Congress, 26–29 November 2009, Fremantle, Western Australia.

 3. Ruth Vine, ‘Decision-Making by Psychiatrists about Involuntary Detention’ in Kate Diesfeld and Ian Freckelton (eds), Involuntary Detention and Therapeutic Jurisprudence: International Perspectives on Civil Commitment (Ashgate, Aldershot, Hampshire 2003) 113, 124.

 4. Terry Carney and others, ‘Mental Health Tribunals: “TJ” Implications of Weighing Fairness, Freedom, Protection and Treatment’ (2007) 17 Journal of Judicial Administration 46.

 5. Carney and others (n 4) 4.

 6. See eg Fleur Beaupert, ‘Mental Health Tribunal Processes and Advocacy Arrangements: “Little Wins” are no Small Feat’ (2009) 16 Psychiatry, Psychology and Law 90.

 7. Australian Health Ministers, National Mental Health Plan 2003–2008 (Australian Government, Canberra 2003) 24.

 8. Julie Henderson, ‘Neo-liberalism, Community Care and Australian Mental Health Policy’ (2005) 14 Health Sociology Review 242, 250.

 9. This research is a collaboration between the Universities of Sydney and Canberra, funded by an Australian Research Council (ARC) Linkage Grant, with industry partners the Law and Justice Foundation of New South Wales, the New South Wales Mental Health Review Tribunal, the Victorian Mental Health Review Board and the ACT Mental Health Tribunal, comparing the operation of Australian mental health tribunals (ARC study). Both authors are part of the research team. Some of the themes and all of the interviews and observations presented derive from the ARC study. Other ideas and considerations come from each author's respective doctoral thesis: Beaupert's thesis entitled ‘Dispensing Justice in a Tablet?: Communication and Participation in the Context of Mental Health Tribunal Processes’ with the University of Sydney and Vernon's on ‘Mental Health Tribunals and Governance: The Use of Conflict Management and Restorative Processes for Dealing with Mental Health Issues’ with La Trobe University.

10. Cf. Sane Australia, ‘SANE Research Report 1: Mental Illness and Social Isolation’ (SANE Australian website 2005) < http://www.sane.org/information/research.html> accessed 1 December 2009.

11. Diane Froggatt, ‘An Overview’ in Diane Froggatt and others (eds), Families as Partners in Mental Health Care: A Guidebook for Implementing Family Work (World Fellowship for Schizophrenia and Allied Disorders, Toronto 2007); William R McFarlane and others, ‘Multiple-Family Groups and Psychoeducation in the Treatment of Schizophrenia’ (1995) 52 Archives of General Psychiatry 679.

12. Catherine Mihalopoulos and others, ‘Assessing Cost-effectiveness in Mental Health: Family Interventions for Schizophrenia and Related Conditions’ (2005) 38 Australian and New Zealand Journal of Psychiatry 511; Vaughan Carr and others, Costs of Psychosis in Urban Australia: A Bulletin of the Low Prevalence Disorders Study (Commonwealth Department of Health and Ageing, Canberra 2002).

13. Joseph Capobianco and others, ‘Examples of Effective Community Services and Training in Family’ in Diane Froggatt and others (eds), Families as Partners in Mental Health Care: A Guidebook for Implementing Family Work (World Fellowship for Schizophrenia and Allied Disorders, Toronto 2007); Lisa Dixon, ‘Providing Services to Families of Persons with Schizophrenia: Present and Future’ (1999) 2 Journal of Mental Health Policy and Economics 3, 4.

14. The New South Wales Consumer Advisory Group is of the view that although consumer rights are paramount, there is a need to acknowledge and support the role of carers because ‘[c]aring for carers ensures better, and longer term, care for consumers’: New South Wales Consumer Advisory Group, ‘Issues Paper: Privacy and Confidentiality’ (1 June 2004), 25.

15. Carers themselves may have specific needs to be met, both for them to provide effective support to service users and to maintain their own physical and mental wellbeing: Sane Australia, ‘SANE Research Bulletin 5: Family Carers and Mental Illness’ (SANE Australia website 2007) < http://www.sane.org/information/research.html> accessed 1 December 2009.

16. See Select Committee on Mental Health, New South Wales, ‘Mental Health Services in New South Wales: Final Report’ (2001–02) Parliamentary Paper No 368, 106, reporting difficulties encountered by the NSW organization UnitingCare.

17. See Victoria Yeates, ‘Ambivalence, Contradiction, and Symbiosis: Carers’ and Mental Health Users' Rights' (2007) 29 Law & Policy 435, 435.

18. See Vivienne Topp, Martin Thomas and Miriam Ingvarson, Lacking Insight: Involuntary Patient Experience of the Mental Health Review Board (Mental Health Legal Centre, Melbourne 2008), 33.

19. Yeates (n 17) 455.

20. Fieldwork conducted for the study included interviews with service users, tribunal members, clinicians, legal and non-legal advocates, and carers in NSW, Victoria, and the ACT, as well as focus or discussion groups with service users, tribunal members, and advocates. Data were also collected through observations of tribunal hearings and the working environment of tribunals and other stakeholders, such as tribunal premises and clinical service contexts, in these jurisdictions. The majority of interviews referred to in this paper are interviews with carers who provide support to a service user who is at the centre of tribunal proceedings, although some of the carers interviewed in NSW had only been involved in Magistrates, rather than tribunal, hearings pursuant to the NSW MHA. In NSW, there is an additional legal review process alongside the mental health tribunal process, which involves initial review of a person's involuntary treatment by local court Magistrates before regular review by the NSW Mental Health Review Tribunal is initiated. Ten interviews with carers across the jurisdictions of NSW, Victoria, and the ACT were examined in writing this analysis. Those interviewed are numbered chronologically, which is an identification method unique to this paper and does not correspond to the method used for the purposes of other publications coming out of this study.

21. See Alikki Vernon, ‘Fostering Participation in Mental Health Tribunal Hearings: The Use of Restorative Justice Practices’ (unpublished paper, 2009), for a fuller discussion regarding how to consider using other complementary processes alongside the tribunal hearing to deal more effectively with mental health issues more broadly.

22. Henderson (n 8); Froggatt (n 11) 1; Select Committee on Mental Health (n 16) 27–28, 104–07.

23. Froggatt (n 11) 1.

24. Froggatt (n 11) 3.

25. Terry Carney, David Tait and Fleur Beaupert, ‘Pushing the Boundaries: Realising Rights Through Mental Health Tribunal Processes?’ (2008) 30 Sydney Law Review 329, 337.

26. John Dawson, ‘Human Rights and Family Participation in Compulsory Treatment Decisions’, 29th Annual ANZAPPL Congress, Families in Law: Investigation, Intervention and Protection, 26–29 November 2009; see Terry Carney and Fleur Beaupert, ‘Rights Drowning in Un-“chartered” Health Waters?’ (2008) 13 Journal of Human Rights 181, considering the possible impact of human rights legislation in relation to mental health tribunal processes generally.

27. Australian Health Ministers (n 7) 23–24.

28. Private Mental Health Consumer Carer Network (Australia), ‘Identifying the Carer Project: Final Report and Recommendations for the Commonwealth Department of Health and Ageing’ (2007) < http://www.health.gov.au/internet/main/ publishing.nsf/Content/mental-pubs-i-carer> accessed 1 December 2009, 2.

29. See Bernadette McSherry, ‘Protecting the Interests of Carers and Family Members through Mental Health Legislation: Recent Trends’, 29th Annual ANZAPPL Congress, Families in Law: Investigation, Intervention and Protection, 26–29 November 2009, comparing Australian and international developments.

30. Mental Health Council of Australia and Carers Association of Australia, ‘Carers of People with Mental Illness Project: Final Report’ (June 2000) < http://www.mhca. org.au/Publications/documents/Carers projectreport2000.PDF> accessed 1 December 2009.

31. Commonwealth of Australia, National Mental Health Policy 2008 (2009), 22. See also, Australian Health Ministers (n 6) 10–11; ACT Health, ‘ACT Mental Health Strategy and Action Plan 2003–2008’ (May 2004) < http://www.health.act.gov. au/c/health?a=sp&pid=1157086603> accessed 1 December 2009; Department of Human Services, ‘Because Mental Health Matters: Victorian Mental Health Reform Strategy 2009–2019’ (February 2009) < www.health.vic.gov.au/mentalhealth/reformstrategy/> accessed 1 December 2009, 47.

32. One example is the NSW model for service delivery to carers of people with mental illnesses, known as the Family and Carer Mental Health Program and funded by the Centre for Mental Health since July 2006, which provides funding to the Area Health Services to provide carer-friendly mental health services and also to a number of organizations to provide statewide carer education and support services.

33. NSW Health, ‘Review of the Mental Health Act 1990, Discussion Paper 1: Carers and Information Sharing’ (February 2004) < http://www.health.nsw.gov. au/pubs/2004/mentalhealthip1.html> accessed 1 December 2009, 6.

34. NSW Health (n 33).

35. It was considered that the previous provisions relating to entitlements for different support people to be notified of events – variously including “nearest relatives”, nominated relatives and friends at different times – were inconsistent and confusing: NSW Health (n 33) 11.

36. However, for a person under guardianship their guardian, and for children their parents, are their primary carers: NSW MHA s 71(1)(a)–(c).

37. NSW MHA ss 71–79.

38. Vic MHA, s 3.

39. See eg Vic MHA s 19A, requiring consultation with guardians, family members, and primary carers involved in providing care and support to the person about treatment plans.

40. See eg Vic MHA s 73, requiring clinicians to make reasonable attempts to notify primary carers of the proposed performance of electroconvulsive therapy.

41. Vic MHA s 120A(3)(ca).

42. Victorian Government, ‘Review of the Mental Health Act 1986, Consultation Paper’ (December 2008) < www.health.vic. gov.au/mentalhealth/mhactreview> accessed 1 December 2009, 75–76. In New Zealand, the Mental Health (Compulsory Assessment and Treatment) Act 2002 (NZ) s 7 requires clinicians to consult “family/whanau” – comprising relationships which a patient defines as family regardless of blood ties – during involuntary treatment unless not in the patient's best interests or not reasonably practicable.

43. HRPA Act, Sch 1, Principle 10(2)(d).

44. ACT Government, ‘The Review of the ACT Mental Health (Treatment and Care) Act 1994: Discussion Paper’ (August 2006) < http://www.health.act.gov.au/c/health? a=sp&pid=1155860255> accessed 1 December 2009, 24; Aequitas Communications, ‘Review of the ACT Mental Health (Treatment and Care) Act 1994, Stage 2 Consultation: Report’ (April 2008) < http://www.mhccact.org.au/cms/media/user_uploads/stage_2_report_april08.pdf> accessed 1 December 2009, 47–48.

45. Mental health tribunals have additional functions in some jurisdictions. For a comparison of community treatment order (CTO) or compulsory outpatient treatment regimes in different Australian and overseas jurisdictions, see Michael Dawson, Community Treatment Orders: International Comparisons (Otago University Print, Dunedin 2005).

46. For a discussion of the composition of tribunal panels in different jurisdictions and the possible human rights implications of downsizing from three-member to one-member panels in some situations, as has recently happened or been contemplated in some jurisdictions, see Carney and Beaupert (n 27).

47. See, John Lesser, ‘All Care and Whose Responsibility?’ (2004) 11 Psychiatry, Psychology and Law 236, 239–241, regarding the lack of any obligation for the Victorian Mental Health Review Board to provide information about its clients to carers, as well as legal and practical limitations on the Board's ability to involve carers appropriately in hearings.

48. In Victoria, the executive officer may give notice of a Mental Health Review Board hearing to “any other person” – which would include a carer – as the Board directs: Vic MHA s 32. However, in practice such notification would often be given by health service staff involved in hearing administration or carers may find out by being told directly by consumers or their treating team if actively involved in care planning.

49. Genevra Richardson and David Machin, ‘Doctors on Tribunals: A Confusion of Roles’ (2000) 176 British Journal of Psychiatry 110, 113; Genevra Richardson and Hazel Genn, ‘Tribunals in Transition: Resolution or Adjudication?’ (2007) 1 Public Law 116, 136; Megan Pearson, ‘Representing the Mentally Ill: The Critical Role of Advocacy Under the Mental Health Act 1986 (Vic)’ (2004) 29 Alternative Law Journal 174, 174.

50. This trend was, on average, more apparent in Victoria and the ACT than NSW where a greater range of health worker perspectives – such as the social worker perspective – were more frequently presented in hearings observed for the present study and according to data collected from paper files of the tribunals.

51. Terry Carney, ‘The Mental Health Service Crisis of Neoliberalism – An Antipodean Perspective’ (2008) 31 International Journal of Law and Psychiatry 101; Carney, Tait and Beaupert (n 25) 346; Ruth Vine, ‘Review Boards in a Mainstreamed Environment: A Toothless Tiger in a Bedless Desert?’ Paper presented at the 30th Congress of the International Academy of Law and Mental Health, Padua, Italy, June 2007.

52. Carer 1 (NSW, 2006).

53. See also, Select Committee on Mental Health (n 15) 99–100.

54. Carer 5 (ACT, 2006).

55. Select Committee on Mental Health (n 16) 27.

56. Carer 8 (Victoria, 2008).

57. Deveson (n 1) 1.

58. Carer 5 (n 54).

59. Carer 9 (Victoria, 2008).

60. NSW Health (n 33).

61. Mihalopoulos and others write: “Many health professionals still exclude family carers from treatment planning, and withhold information, in appropriately citing confidentiality” (n 11) 513. Carers appear to have a range of unmet needs relating to access to respite and home care services, to counselling and debriefing and to general support in their caring roles: NSW Health (n 33) 14.

62. Carer 9 (n 59).

63. See Froggatt (n 11) 8.

64. Carer 9 (n 59).

65. Carer 9 (n 59).

66. Carer 3 (ACT, 2006).

67. Carer 9 (n 59).

68. Carer 8 (n 56).

69. Carer 1 (n 52).

70. See Fleur Beaupert, ‘Mental Health Tribunals: From Crisis to Care’ (2007) 32 Alternative Law Journal 219.

71. Carer 9 (n 59).

72. Carer 8 (n 56).

73. See MHA NSW s 156, providing for a person to have access to their medical records subject to any order of the tribunal, and providing for a medical representative of the person to have regard to any warning of a medical practitioner that it may be harmful to communicate this information; the Vic MHA s 26(7)(8) enumerates in more detail circumstances when the Board may limit a person's access to their files. The Victorian and ACT mental health statutes expressly provide that the relevant tribunal is bound by the rules of natural justice: MHA Vic s 24(1)(b); MHA ACT s 96.

74. See NSW MHA s 156; Vic MHA s 26(8).

75. Consumer 12 (NSW, August 2007)

76. Carer 5 (n 54).

77. Dale L Johnson, ‘Models of Family Intervention’ in Diane Froggatt (ed), Families as Partners in Mental Health Care: A Guidebook for Implementing Family Work (World Fellowship for Schizophrenia and Allied Disorders, Toronto 2007) 10.

78. See Lesser (n 47) 240–43, discussing some of the legal and practical dilemmas in this regard, and specifically considering whether mental health tribunals should have a similar obligation to clinicians to provide information about service users (such as whether they are subject to an involuntary treatment order) directly to carers where required for a carer to fulfil their caring role. Our recommendation relates more narrowly to health services and tribunals providing general information and assistance to carers about the hearing process and how to participate in it.

79. See eg Access to Justice Taskforce, Attorney-General's Department, A Strategic Framework for Access to Justice in the Federal Civil Justice System: A Guide for Future Action (Commonwealth of Australia, Barton ACT 2009); Law Reform Committee, Victoria, ‘Inquiry into Alternative Dispute Resolution and Restorative Justice: Final Report’ (Parliamentary Paper No 184, 2009).

80. Carney, Tait and Beaupert (n 26).

81. Terry Carney and others, ‘Advocacy and Participation in Mental Health Cases: Realisable Rights or Pipe-Dreams’ (2008) 26(2) Law in Context 125; Beaupert (n 6).