23 Big Issues

Are they still relevant?

Douglas Holmes

2018

1

Contents

Foreword ……………………………………………………………………………………………………………………………………….. 3

Background ……………………………………………………………………………………………………………………………………. 4

Issue (1): Transport ………………………………………………………………………………………………………………………… 5

Issue (2): Seclusion ………………………………………………………………………………………………………………………… 5

Issue (2): Seclusion continued …………………………………………………………………………………………………………. 6

Issue (3): Side Effects ……………………………………………………………………………………………………………………… 6

Issue (4): Accommodation ……………………………………………………………………………………………………………….. 7

Issue (5): Employment …………………………………………………………………………………………………………………….. 7

Issue (6): Access when unwell …………………………………………………………………………………………………………. 8

Issue (7): Continuity of Care …………………………………………………………………………………………………………….. 8

Issue (8): Choice of Therapists …………………………………………………………………………………………………………. 8

Issue (9): Rehabilitation …………………………………………………………………………………………………………………… 9

Issue (10): ECT ………………………………………………………………………………………………………………………………. 9

Issue (11): Unpaid Work ………………………………………………………………………………………………………………… 10

Issue (12): Stigma …………………………………………………………………………………………………………………………. 10

Issue (13): Lack of Information ……………………………………………………………………………………………………….. 11

Issue (14): Lack of Legislation ………………………………………………………………………………………………………… 11

Issue (15): Lack of Partnership ……………………………………………………………………………………………………….. 12

Issue (16): Lack of Empowerment …………………………………………………………………………………………………… 12

Issue (17): Rural and Remote ………………………………………………………………………………………………………… 13

Issue (18): Management Plans ……………………………………………………………………………………………………….. 13

Issue (19): Support from Hospital ……………………………………………………………………………………………………. 14

Issue (20): Access to Psychiatrists ………………………………………………………………………………………………….. 14

Issue (21): Children of parents with MI …………………………………………………………………………………………….. 14

Issue (22): Young People ………………………………………………………………………………………………………………. 15

Issue (23): C.A.L.D ……………………………………………………………………………………………………………………….. 15

Appendix A: Mental Patients Union Demands…………………………………………………………………………………… 16

Appendix B: Memo to 23 Big Issues Working Group Members …………………………………………………………… 17

Appendix C: Email to abstracts for TCD 2010 …………………………………………………………………………………… 18

Appendix D: The 23 Big Issues small group workshop. ……………………………………………………………………… 19

Appendix E: List of Original Issues ………………………………………………………………………………………………….. 20

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Foreword

I was pleased to be asked to support the release In1994, the first Consumer Day was held in Melbourne with this tradition continuing until this day. TheMHS (The Mental Health Services) conference. Members of TheMHS management committee have had a long history of supporting consumers to have a voice.

One of the crucial ingredients in getting a better outcome for people with mental health distress is making sure we understand the issues that are of importance to them. Ensuring that these issues are broadly socialised, along with thoughts about what could and should be done to address them, is the next step. This report is therefore an important initiative towards achieving that goal.

In both Australia and New Zealand, the issues outlined in the 23 Big Issues Report have been articulated previously. For example, they have appeared in a number of other reports, including the 1992 ‘Burdekin’ Report, 1994 National Community Advisory Group Report; “Let’s talk about Action”, The 1996 Mason report, Te Kokiri: The NZ Mental Health and Addiction Plan 2006-2015. Internationally, they are very similar to a list of 24 issues presented by the Mental Patients Unions in April 1973 in England called The Declaration of Intent.

The 23 Big Issues Report reflects a consumer perspective, and has been informed in particular by consumers who have attended the Consumer Day at TheMHS conferences. The consumer perspective is defined as: A way of seeing the world in the light of experience/s of mental/emotional distress. Includes experiences of seeking support (of various kinds), of stigma in the community and within services. Also incorporates a sense of solidarity with others who have had similar experience (taken from The Kit: the advocacy we choose to do, p 256).

The issues were reviewed at the 2006 Townsville Consumer Day and again at the 2010 Sydney Consumer Day. In 2014, the TheMHS Management Committee supported a working group to consider the feedback from the many people who have provided both written and verbal feedback about the 23 Big Issues.

The 23 Big Issues Report is the product of that process. I thank the working group for their efforts in presenting it in a concise summary format that makes it easy to understand. Each of the issues warrants serious consideration. I therefore commend this Report to you and I look forward to hearing of achievements being made in addressing each issue over coming years.

Background

This report is being developed for release at the In 2001 the Australian Mental Health Consumer 2018 Adelaide TheMHS Conference. It will include Network presented the Issues to the Australian and acknowledge where progress has been made Health Ministers Advisory Council National Mental on each of these issues, however since this work Health Working Group so all state & territory discovered the 1974 Mental directors could have had the opportunity to say what Patient Union report “Declaration of Intent” that had they were doing about these issues. identified 24 similar issues (included at Appendix A) One of the crucial ingredients in getting a better Although the 2000 TheMHS Adelaide Consumer outcome for people with mental illness is firstly Forum, is seen as the starting point for the 23 Big making sure we understand the issues of importance Issues project, it is important to acknowledge the for them, and secondly letting everyone know what work done in previous consumer day committees, the issues are and what should be done about them. especially the 1999 TheMHS Melbourne Consumer This means we need to collect information from the day organising committee: with assistance from the people involved: those with mental illness; those that Victorian Mental Illness Awareness Council (VMIAC) care for them; those that provide services to them; hwww.vmiac.org.au, when they identified the first 20 and those that make policy about mental health. Issues and started to focus the attention of people attending the consumer day on the importance of In Australia these issues have appeared in a long list of reports, including the 1992 ‘Burdekin’ Report,these issues. 1994 National Community Advisory Group Report; Steven Pitcher had been nominated as the co- “Let’s talk about Action” and the 2005 Mental Health dinator for the Consumer Day in Adelaide in 2000. Council of Australia (MHCA) (in association with the Human Rights and Equal Opportunity Commission) Steven attended his first Consumer Day in 1999 in “Not for Service” Report, which all describe the Melbourne. It was there that he saw the work that failure in the mental health system and the need for had been developed by consumers, believed that change for services in Australia. this work was important and that action was needed. He decided that it was time to stop talking about In New Zealand at a meeting held during 2011 of what was wrong and encourage people to develop the Auckland Regional Consumer Network the solutions that had some relevance and meaning for participants suggested the following three reports be consumers. considered to show that these issues still need to be addressed in NZ. The reports are; The 1996 Mason On 28 August 2000, at the Adelaide Convention report, Te Kokiri: The Mental Health and Addiction Centre, 235 people with lived experience of a mental Plan 2006-2015; and Our Lives in 2014: A recovery illness came together and worked through the vision from people with experience of mental illness. vissues. Following the 2010 Sydney TheMHS consumer day a 23 Big Issues working group was started by the organising committee and the group has meet regularly to consider the feedback from the many people who attended the 2010 consumer day. The two outcomes were (a) the addition of 3 more
to make a total of 23; and (b) the creation of
a document detailing the work of the day. During the
2000 consumer day those present workshopped the
issues, Steven wrote up their findings and presented them to Mr Woolridge, Commonwealth Minister for This document is a summary of that work Health and the 2000 Youth Round table forum: For more information contact: The document, entitled The Most Important Issues Affecting People with a Mental Illness or Disorder Douglas Holmes (known to most people as the 23 Big Issues), Chairperson TAMHSSprovided background to each of the issues and Website: https://tamhss.wordpress.com/proposed solutions developed by the people at the Email: info@mh-worx.comforum. This document is available on the TheMHS web site. Steven passed away in 2010 aged 31 21 August 2018 years of age. He is sadly missed by the TheMHS family and the consumer movement.

Issue Report

Number and Name: Transport of Original

Issue (1): Transporting People With Mental Illness To Hospital

Description Of Issue:

Transporting people with mental illness to hospital.

Recommendations From Working Group:

• Rec No 1: Ongoing coordinated and sustainable training between mental health teams, police and ambulance.
• Rec No 2: Workable partnership, true partnerships between local Mental Health teams, police and ambulance.
• Rec No 3: Ongoing conversations at a local level between consumer advocacy groups and their families and the police.

Other issues from working group: Nil

Number And Name: Seclusion Of Original

Issue (2): An Event In Which An Individual Experiences A Seclusion And/or Restraint

Description Of Issue:

An event in which an individual experiences seclusion and/or restraint.

Recommendations:

• Rec No 1: People experiencing distress and trauma should be treated in an inclusive, collaborative and respectful manner in the event of seclusion and/or restraint.

• Rec No 2: A National seclusion and restraint audit be developed, implemented, reviewed and actions developed at regular service meetings, including documentation. The audit to include:

  • staff intervention (numbers involved in enforcing the seclusion and processes pre, during and post seclusion)
  • assessment times
  • occasions when person is escorted from seclusion room for access to toilet
  • time spent in seclusion
  • consumer participation in staff directed post seclusion counseling
  • consumer report of experiences and perspective to consumer worker/peer support/ advocacy in post seclusion discussions
  • use of mechanical restraints and reason for use
  • use of chemical restraints and medication doses higher than therapeutic guidelines
  • care and wellness plans reviewed identifying early intervention plans for possible future events

• Rec No 3: All inpatient staff to participate in a standardized training program on seclusion and restraint with a focus on trauma informed care (http://www.samhsa.gov/nctic/) -including reduction strategies, communication techniques and use of environmental alternatives such as sensory modulation rooms and people being treated in an inclusive, collaborative and respectful manner. An update refresher program to be mandatory every two years. Consumer/peer workers to be included in the training programs.

• Rec No 4: Consumer worker/peer support and advocacy programs, such as ‘post seclusion narratives’ and ‘creative expression of experiences’ be implemented in all services, with appropriate actions regarding rights and responsibilities to be taken when needed.

Issue

Rec No 5:

Consumer participation, collaboration in developing relapse prevention plans including advance directives for treatment and care to be acknowledged as acceptable personal directives, completed when well, for periods of un- welfare. Implementation of this process within legislative framework be considered.

Other issues for consideration/discussion:

The working group need to be aware of: NMHCCF Position Statement – Ending Seclusion and Restraint in Australian Mental Health Services (2009, revised 2010) that has been put out by the Australian National Mental Health Consumer and Carer Forum (http://www.nmhccf.org.au/Publications-info) and SAMHSA’s National Center for Trauma-Informed Care (NCTIC), a technical assistance center dedicated to building awareness of trauma-informed care and promoting the implementation of trauma-informed practices in programs and services (http://www.samhsa.gov/nctic/).

Number and Name

Issue (3): Side Effects of Original Issue

Description of Issue

Mental health consumers having little or no choice of prescribed medication and experience of the direct side-effects that result from these medications

Recommendations from working group

Rec No 1:

Consumers be given a card with 4 or 5 key questions to ask clinicians about their medications at point of prescriptions.

Rec No 2:

Strong support for the consumer voice to unite and raise awareness around medication issues. This would be via internet forum/links etc. Perhaps it could be a standing agenda item for the new National Consumer Peak Body http://crazelateralsolutions.com

Rec No 3:

Checkbox scale tool for clinicians to gauge quality of life due to the impact of effects from medications. (Then we were informed that Ron Coleman already has one so I will investigate that and send it on)

Other issues for consideration/discussion:

We need to follow up about the checklist that Ron Coleman has developed. The working group discussed that we needed to identify what is the universal wording that is currently being used to collect Consumers views into their treatment plans e.g. In NSW it is the NSW Health MHOAT Consumer Wellness Plan (http://www.health.nsw.gov.au/pubs/2010/whoserecovery_dl_v5_web.html)

Number and Name

Issue (4): Accommodation of Original

Issue

Description of Issue

Lack of choice, safety and support regarding accommodation for people with a mental health issue.

Recommendations

Rec No 1: Individual housing/accommodation plans to reflect the individuals changing need, with flexibility for transfers between varying levels of accommodation support structures (e.g. single living, shared accommodation, group home and 24hr support), joint tenancies in public housing and housing within close proximity to support networks (family, friends or therapeutic services).

Rec No 2: Provide supported accommodation that meets individual needs in the community Working party to include a descriptive examples box with community support strategies from across Australia and New Zealand (e.g. Housing Accommodation Support Initiative (HASI), Personal Helpers and Mentors Services, Joint Guarantee of Service, Catholic Community Care, Meals on Wheels etc)

Rec No 3: Suggested rewording: education program (including the lived experience) to be developed for landlords (public, NGO and private) to increase awareness of individuals support needs and community options to maximize and maintain their recovery

Rec No 4: Suggested rewording: education program (including the lived experience) to be developed for landlords (public, NGO and private) to increase awareness of individuals support needs and community options to maximize and maintain their recovery

Other issues for consideration/discussion: People need to be aware of the Mental Health Council of Australia paper on homelessness at: www.mhca.org.au Look at how we develop the descriptive examples box with community support strategies from across Australia and New Zealand. Do we need to include links to programs like NSW HASI http://www.health.nsw.gov.au/pubs/2007/hasi_intiative.html

Number and Name

Issue (5): Employment of Original

Issue

Description of Issue

Lack of employment support & information opportunities for those experiencing a mental illness.

Recommendations from group 5

Rec No 1: Develop training and support programs to assist consumers in obtaining ongoing employment

Rec No 2: Publicise and improve government subsidies to the wider community of employers

Rec No 3: Support consumers in developing worker co-ops and social enterprises

Rec No 4: Education of employers and doctors about current opportunities for employment

Rec No 5: Legislate standards for payment of consumers within mental health services, i.e. classification of positions and amount of payment

Other issues for working party consideration/discussion: Nil at this stage

Page 8

Number and Name\nIssue (6): Access when unwellof Original\n\n### Description of Issue\nPeople with a mental illness having to be really unwell to access help\n

Recommendations\n- Rec No 1:\nMore information and education with regards to mental and physical health services e.g. housing\n- Rec No 2:\nProvide more peer support in all services\n- Rec No 3:\nDo an Audit of existing mental health services & training eg. Examples from group was that in Adelaide consumers talked of a first stop shop for people who think they may have mental health issues, Consumer led training of mental health workers and GP’s.

Other issues for consideration/discussion:\nThe National Consumer and Carer Forum has an issues paper on duty of care at: http://www.nmhccf.org.au/documents/A%20Duty%20to%20Care-Duty%20of%20Care%20Brief.pdf\n

Number and Name\nIssue (7): Continuity of Careof Original\n\n### Description of Issue\nContinuity of care\n

TheMHS Consumer Day 2010 Original Recommendations from group 7\n

Recommendations\n- Rec No 1:\nOne recovery plan that has authority and you take with you and your case worker linked to what you need (in line with recovery plan)\n- Rec No 2:\nFocusing on Relationships instead of service (Relationships aid recovery)\n- Rec No 3:\nWhen in hospital education about what you need to live independently when out of hospital. To be clarified with note taker David Duval and/or group members who was the Recovery Bus Coordinator for the group\n

Other issues for working party consideration/discussion:\nIn NSW there is information in the NSW Health MHOAT Consumer Wellness Plan at: http://www.health.nsw.gov.au/pubs/2010/whoserecovery_dl_v5_web.html Are there other examples that we could use\n

Number and Name\nIssue (8): Choice of Therapists of Original\n\n### Description of Issue\nLack of choice in type of therapists i.e. Alternative, Psychologists, OT, Peer Worker\n

Recommendations\n- Rec No 1:\nChanging medications can be terrifying - it should be done in a safe environment (clinic - supervision)\n- Rec No 2:\nEarly access to counselling/therapy with someone who has understanding and suffered (feel the need to share with a counsellor without judgement)\n- Rec No 3:\nMore funding and research into complimentary therapies\n- Rec No 4:\nDoctors should be more informed and have better referral system - not just adding medications\n

Other issues for working party consideration/discussion:\Nil at this stage\n

Issue (9): Rehabilitation

Description of Issue

Lack of worthwhile and appropriate rehabilitation services – that are consumer led, focus on recovery - wellbeing – employ consumers as staff – provide access to wellbeing and recovery services

Recommendations

• Rec No 1: Education and information on physical and psychological therapies (traditional and alternative) and programs be available and offered to consumers.
• Rec No 2: Consumer led services, activities and programs to be adequately resourced and supported.
• Rec No 3: Partnerships between services be strengthened to ensure consumers have access to and an empowered choice of wellbeing and recovery activities and programs that support their recovery journey at that point in time.
• Rec No 4: Access to information, including available community services and that recovery focused activities be further developed in all inpatient settings. These should include peer run programs.
• Rec No 5: Peer led programs to support the transition of people from hospital to home be reviewed and promoted for implementation within all health services. Examples include: FUDGES (telephone support program); CAN Hospital to Home.

Other issues for working party consideration/discussion: Nil at this stage

Issue (11): Unpaid Work

Description of Issue

To include the words: Opportunities for paid work in a variety of capacities, parity with other workforces and the adverse affects of unpaid work

Recommendations

• Rec No 1: Policy framework and relevant policies within National Mental Health standards that spells out types of positions, conditions and relationships of this work to Centrelink and other Government payments - dedicated funding within budgets towards consumers wages.
• Rec No 2: Work to Recovery programs through Commonwealth Department of Employment with a range of payments related to getting better and staying well
• Rec No 3: Training of Mental Health workforce by consumers to increase receptivity and understanding so that consumers jobs are real jobs and not something of inferior/status
• Rec No 4: Where do mental health consumers work fit in: - consult with ACTU, with human rights/equal opportunity accountability mechanism
• Rec No 5: We support the opportunities for people to do voluntary work where this is appropriate and by choice and should not substitute for employing consumers in services

Other issues for working party consideration/discussion: The National Consumer and Carer Forum has an issues paper on employment at: http://www.nmhccf.org.au/documents/Employment%20brief.pdf

Issue (12): Stigma

Description of Issue

Stigma from the: Family, Community, Workplace, Police force and Mental Health Workers

Recommendations

• Rec No 1: Stigma has been colonised and ’lost its sting. We need to move beyond stigma and discrimination to recognising prejudice and oppression.
• Rec No 2: A consumer-perspective, consumer-led anti-discrimination campaign based on the NZ Like Minds, Like Mine campaign highlighting this shift in orientation and language.
• Rec No 3: 40% of the mental health workforce to have lived experience and be valued for that experience not patronized or used to gain funding.
• Rec No 4: Consumers integrated into teaching mental health practitioners from a consumer perspective (lived experience). This must be appropriately resourced and a respected part of curriculum.
• Rec No 5: Consumers to recognize self-stigma and the importance of language in maintaining dignity.

Other issues for working party consideration/discussion:The National Consumer and Carer Forum has an issues paper on stigma at: http://www.nmhccf.org.au/documents/Final%20version%20Stigma%20&%20Discrimination.pdf

Issue (13): Lack of Information

Description of Issue

Lack of information given to consumers about their illness and legal rights

Recommendations

• Rec No 1: Create a resource that includes consumer rights and responsibilities, what is mental illness, medication information from a consumer perspective, side effects, withdrawal effects, communicating with healthcare professionals and how to navigate effectively through the system.
• Rec No 2: This resource should look like the ‘Y not make it U’ resource in out packs. It should be colourful, have human faces who have lived experience of recovery and address the HARD facts/questions that people always tiptoe around.

Other issues for working party consideration/discussion: The National Consumer and Carer Forum has an issues paper on information at: http://nmhccf.org.au/documents/Mental%20Health%20Facts%20and%20Figures.pdf

Issue (14): Lack of Legislation

Description of Issue

Lack of legislation upholding and protecting the human rights of mental health consumers

Recommendations

• Rec No 1: Legislation to support a National Charter of Human Rights for mental health consumers with employed consumers to monitor and enforce them.
• Rec No 2: Legislation for Antidiscrimination Act extension to smoking and involuntary medication for mental health consumers.
• Rec No 3: Legislation to fix a percentage of budget for funding of independent consumer groups democratically responsive to consumers as proposed by the Our Pick report.
• Rec No 4: Legislation to include psychiatric disability in the National Disability Insurance scheme

Other issues for working party consideration/discussion: The National Consumer and Carer Forum has an issues paper on legal issues at: http://www.nmhccf.org.au/documents/NMHCCF%20Response%20to%20Guidelines%20for%20diversion%20and%20support%20of%20MI%20offenders.pdf

Number and Name

Issue (15): Lack of Partnership of Original

Description of Issue

Achieving equal partnerships through delivery of services that meet consumer needs and consumer representation is embedded in service delivery

The MHS Consumer Day 2010 Original Recommendations from Group 15

• Rec No 1: Recognize prior learning when determining consumer qualifications
• Rec No 2: Provision of accessible education and training for consumer workforce and volunteers
• Rec No 3: Provision of accessible education and training for consumer workforce
• Rec No 4: Accountability of consumer participation is in line with National Standards
• Rec No 5: Adequate increases of effective resources for the consumer workforce and Volunteers

Other Issues For Working Party Consideration/Discussion:

The National Consumer and Carer Forum has an issues paper on participation at: http://www.nmhccf.org.au/documents/Final%20C&C%20participation.pdf

Number And Name

Issue (16): Lack Of Empowermentof Original

Description Of Issue

Lack of empowerment for mental health consumers

TheMhs Consumer Day 2010 Original Recommendations From Group 16

• Rec No 1: Form An Empowerment Working Group To Discuss How Consumers Can Facilitate Empowerment
• Rec No 2: Peer Support Groups/Educators To Be Supported To Access Resources For Early Intervention Programs
• Rec No 3: Continue To Keep Individual And Community Empowerment On The Agenda
• Rec No 4: Flag Early Intervention As A Separate Issue. This Will Become Issue 92 - See Issue 010 September 2010 issue No 10 On The Themhs Web For More Information Www.themhs.org

Other Issues For Working Party Consideration/Discussion:

Issue (17): Rural and Remote

Description of Issue

Lack of services in rural and remote areas

Recommendations

• Rec No 1: Non taxable incentives for health professional plus fuel subsidy for those people who need to drive for treatment.
• Rec No 2: Active support for peer volunteers by implementing a national plan for reimbursement of expenses.
• Rec No 3: Mobile mental health clinics including peer support workers.

Other issues for working party consideration/discussion:

Page 14

Number and Name - Issue (19): Support from Hospital of Original Issue

Description of Issue

Little support from hospital to home

Recommendations

• Rec No 1: Implement the Recovery Star “hospital to home” program www.mhpf.org.uk
• Rec No 2: Provision of recovery respite services for consumers as an alternative to being admitted to hospital.
• Rec No 3: Develop “info exchange” - headspace, get support for housing and home care, help with getting a job, list of contact numbers for all local areas

Other Issues for Working Party Consideration/Discussion:

The working group discussed that we needed to identify what is the universal wording that is currently being used to collect Consumers views into their treatment plans e.g. In NSW it is the NSW Health MHOAT Consumer Wellness Plan http://www.health.nsw.gov.au/pubs/2010/whoserecovery_dl_v5_web.html The National Consumer and Carer forum has a paper http://www.nmhccf.org.au/documents/Final%20workshop%20report%202010.pdf

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Number and Name - Issue (20): Access to Psychiatrists of Original Issue

Description of Issue

Lack of suitable access to Psychiatrists

Recommendations

• Rec No 1: Consider a voucher system to obtain care from psychiatrist, enabling greater choice and reducing waiting times.
• Rec No 2: Incentives to attract psychiatrists to rural/disadvantaged area e.g.: HECS debt reduction, accommodation, company car.

Other issues for working party consideration/discussion:

The working group discussed that we needed to identify what is the universal wording that is currently being used to collect Consumers views into their treatment plans e.g. In NSW it is the NSW Health MHOAT Consumer Wellness Plan http://www.health.nsw.gov.au/pubs/2010/whoserecovery_dl_v5_web.html The National Consumer and Carer forum has a paper http://www.nmhccf.org.au/documents/Final%20workshop%20report%202010.pdf

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Number and Name - Issue (21): Children of parents with MI of Original Issue

Description of Issue

Children of parents with a mental illness

TheMHS Consumer Day 2010 Original Recommendations from Group 21

Rec No 1: Funded website needed to give info re: National best practice guidelines, policies, laws, rights and where to access help and respite care for families.

Rec No 2: Special independent advocates to assist parents and kids with legal assistance, help and support available.

Rec No 3: More staff training regarding effects of parent of mental illness on children.

Other issues for working party consideration/discussion:

Include information on COPMI website www.copmi.net.au

Number and Name

Issue (22): Young Peopleof Original Issue

Description of Issue

Unique problems facing young people with a mental illness

TheMHS Consumer Day 2010 Original Recommendations from Group 22

• Rec No 1: Education: Provide training and support for teachers in primary, secondary school and tertiary institutions around (1) Mental Health Literacy e.g. Mental Health First Aid. (2) Access to pathways to age-appropriate care, and (3) mental health friendly practices and how to establish a mental health friendly culture.

• Rec No 2: Youth Participation: Make it compulsory for youth mental health services to offer meaningful youth participation programs which value young people views, skills and contributions. In-order for it to not be tokenistic it should (1) invest in training (2) fund young people to attend relevant conferences/ leadership events (3) provide adequate and meaningful remuneration for their time and contributions and (4) services need to make use of the young peoples contribution and be held accountable

• Rec No 3: Access to youth accessible specific care: Make youth specific services available to all young people and delivered in accessible locations and on time. The services need to go beyond clinical care and provide group programs and youth participation programs (including peer support)

Other issues for working party consideration/discussion: Include web for headspace: hub.headspace.org.au

Appendix A: Mental Patients Union Demands

Mental Patients Union Demands taken from the Declaration of Intent of April 1973 [Use to discuss what has and has not been achieved].

We Demand

• The abolition of compulsory treatment i.e. we demand the effective right of patients to refuse any specific treatment.
• The abolition of the right of any authorities to treat patients in the face of opposition of relatives or closest friends unless it is clearly shown that the patient of his own volition desires the treatment.
• The abolition of irreversible psychiatric treatments (ECT, brain surgery, specific drugs)
• Higher standards in the testing of treatments before use on us.
• That patients be told what treatments they are receiving are experimental and should have the effective right to refuse to be experimented on.
• That patients be told what treatments they are receiving and what the long-term effects are.
• Also the abolition of isolation treatment (seclusion in locked side rooms, padded cells, etc.)
• The right of any patient to inspect his case notes and the right to take legal action relating to the contents and consequences of them.
• That the authorities should not discharge any patient against his will because they refuse treatment or any other reason.
• That all patients should have the right to have any treatment which we believe will help them.
• That local authorities should provide housing for patients wishing to leave hospital and that adequate security benefits should be provided. We will support any mental patients or ex-patients in their struggle to get these facilities and any person who is at risk of becoming a mental patient because of inadequate accommodation, financial support, social pressures,etc.
• We call for the abolition of compulsory hospitalisation.

13. An end to the indiscriminate use of the term ‘mental subnormality’. We intend to fight the condemnation of people as ‘mentally subnormal’ in the absence of any real practical work to tackle the problem with active social understanding and help.

14. The abolition of the concept of ‘psychopath’ as a legal or medical category.

15. The right of patients to retain their personal clothing in hospitals and to secure their personal possessions without interference by hospital staff.

16. The abolition of compulsory work in hospitals and outside and the abolition of the right of the hospital to withhold and control patients’ money.

17. The right of patients to join and participate fully in the trade union of their choice.

18. That trade union rates are paid to patients for any work done where such rates do not exist.

19. That patients should have recourse to a room where they can enjoy their own privacy or have privacy with others, of either sex, of their own choosing.

20. The abolition of censorship by hospital authorities of patients communications with society outside the hospital and in particular the abolition of telephone and letter censorship.

21. We demand the abolition of any power to restrict patients visiting rights by the hospital authorities.

22. The right of Mental Patients Union representatives to inspect all areas of hospitals or equivalent institutions.

23. We deny that there is any such thing as ‘incurable mental illness and demand the right to investigate the circumstances of any mental hospital patient who believes he or she is being treated as incurable’.

24. We demand that every mental patient or ex-patient should have the right to a free second opinion by a psychiatrist of the patient’s or Mental Patients Union representatives’ choice if he or she disagrees with the diagnosis and that every patient or expatient should have the right to an effective appeal machinery.

Archive used in teaching by Clare Ockwell for Capital Project Trust, West Sussex For more information about the Mental Patients Union see http://studymore.org.uk/mpu.htm

Appendix B: Memo to 23 Big Issues Working Group Members

Hi!

Please find the template the 23 Big Issues working group has developed with information from the small group you attended from the TheMHS Consumer Day.

The template has the recommendations, feedback and comments from the 94 people who left their email address at the end of the TheMHS Consumer day and the 62 who have responded through Surveymonkey & Mailchimp.

If you have email addressed of others who attended your small issues group at the 2010 TCD please forward this onto them.

We would like you to read through the template and make any comments within six weeks.

Once the 23 Big Issues working group had reviewed the comments and have agreed to any changes the template would then be circulated to all the people that attended the 2010 TCD we have email addresses for. This group would have a further six weeks to comment.

When these comments have been reviewed by the 23 Big Issues working group the template would be displayed on the 23 Big Issues web page of the TheMHS web site.

Our goal is to have a number of the completed documents on the TheMHS web site prior to the 2011 Adelaide TCD. Once all 23 issues have been commented on the final report will be finalised and will include the posters and abstracts from Sydney TCD 2010. A decision about where the report will be disseminated after further consultation with the TheMHS management committee and the 23 Big Issues working group.

Appendix C: Email to abstracts for TCD 2010

This letter is a follow up from the email I sent out earlier this week.

We have received 25 abstracts for the posters sessions for the 2010 Sydney TheMHS Consumer Day with some of the issues we have received more than one abstract. i.e. Issue 15: Lack of Partnership has 3 abstracts.

All the abstracts are included in the attachment titled: 23 Big Issues Poster Session 2010 TheMHS Consumer Day. This document will be finalised after the day and when finished will be a summary of the 2010 Sydney TheMHS Consumer Day.

I am writing to ask if you are definitely coming to the consumer day on Tuesday 14 September 2010 and still want to present a poster. The poster can be a maximum size equal to (420 mm or 594 mm) the equilevant to the size of an A2 sheet and be either in landscape or portrait format. Please RSVP by Friday 2 September 2010.

If you are attending the day and presenting a poster please read through your abstract in the attached document. Please respond if you want to make any changes to the words to your abstract before Wednesday 8 September 2010.

I have included some background information on why we are doing the 23 Big Issues Poster sessions. The session is building on the recommendations from the 2006 Townsville Consumer Day.

They were:

• There needs to be continued support of the development of the social network associated with the TheMHS Consumer Day. The network promotes information sharing, social support and monitors progress with the 23 Big Issues.
• Further development of an action research project that will examine the gains and losses for consumers since 2000, and identify whether the outcomes are meaningful for consumers and find ways of bringing the issues to resolution.
• Further consultation needs to take place with consumers over the next 18 months to seek out, clarify & highlight the many positive examples happening around these issues

To assist the organising committee it would be useful to know if you are presenting a poster: would you be able to facilitate one of the small groups or would you prefer to just present the poster. The small groups will have between 15 – 20 consumers around the issue that relates to your poster. The committee has allowed 90 minutes for the session and the session will start at 11.15 and conclude at 12.45 for lunch.

The Consumer Day organising committee will be meeting on Thursday 2 September to finalise the program and instructions for each of the facilitators, poster presenters and participants in the 23 Big Issues Poster sessions that will be part of the day.

If you would like more information or wish to talk further about the session I can be contacted on 041 346 4469, happy to call you back or you can email me on douglasholmes@optusnet.com.au

Appendix D: The 23 Big Issues small group workshop.

An expression of interest was developed and circulated by email through the groups email list, 25 people have responded and these posters will be showcased after morning tea.

Everyone else to pick one issue from the 23 Big Issues that they would like to comment on. After morning tea we will be exchanging information about the issues and why we came to the group.

Instructions for individuals and Recovery Bus Coordinators are on page 6. Doing it We will break into small groups – see page 11 for layout of room

Each group will look at one issue.

• People will share their experiences about this issue.
• The size of the group will be around 15 to 20 people.
• The group will have 90 minutes to discuss & develop any recommendations.
• Recommendations will be entered onto the Recovery Bus Stops.

Recovery2 Bus Coordinator3

• Each group will have a Recovery Bus Coordinator and be wearing a Recovery Bus Coordinators hat.

Role of Recovery Bus Coordinator

• To guide the group, the group discussion and “keeping the group on track”
• To make sure all members of the group have a fair say
• To feedback the groups’ solutions to the consumer forum delegates after lunch.
• There will be two to three minutes to do this per group.

Support people A group of friendly support people have been selected by the consumer organising committee to assist. There role will include:

• Being a scribe (only if asked by Recovery Bus Coordinator)
• Any other odds and ends the group require.

The next steps: Recommendations will be sent to;

• Presented to everyone at TAMHSS meeting on Friday morning during the conference
• Sent to state Consumer Advisory Groups around Australia.
• Given to the National Consumer and Carer forum
• Given to relevant places in New Zealand.
• Sent to the Mental Health Council of Australia.
• Sent to all State NGO Mental Health Peaks
• Sent to state and territories Mental Health & Drug and Alcohol offices
• Presented to various members of the Australian Federal Government during October as part of the National Walking for Pleasure meeting on the ground of Parliament House.

Appendix E: List of Original Issues

No	Issue Title	Description
1	Transport	Transporting people with a mental illness to hospital by police.
2	Seclusion	People experiencing a mental illness being strip-searched and put in seclusion rooms when detained in psychiatric facilities
3	Side Effects	Mental health consumers having little or no choice of prescribed medication and the side-effects that result
4	Accommodation	Lack of choice, safety and support regarding accommodation for people with a mental illness
5	Employment	Lack of employment opportunities for those experiencing a mental illness
6	Access When Unwell	People with a mental illness having to be really unwell to access help
7	Continuity of Care	Continuity of care in the community and hospitals for people with a mental illness
8	Choice of Therapist	Lack of choice in type of therapist i.e. Alternative, Psychologist,
OT, Peer Worker
9	Rehabilitation	Lack of worthwhile and appropriate rehabilitation.
10	ECT	Unfair and inappropriate Detention, Treatment and Administrative Orders to force treatment such as Electro-Convulsive Treatment (ECT).
11	Unpaid Work	Amount of unpaid work done by people with a mental illness
12	Stigma	Stigma from the family, community, workplace, police force,
mental health service providers
13	Lack of Information	Lack of information given to consumers about their illness and legal rights
14	Lack of Legislation	Lack of legislation protecting mental health consumers
15	Lack of Partnership	Lack of true partnership in service delivery and tokenistic representation.
16	Lack of Empowerment	Lack of empowerment for mental health consumers
17	Rural and Remote	Lack of mental health services in rural and remote areas.
18	Management Plans	Little or no involvement in management plans
19	Support from Hospital	Little support from hospital to home for people with a mental illness
20	Access to Psychiatrists	Lack of suitable access to psychiatrists
21	Children of parents with MI	Children of parents with a mental illness
22	Young People	Unique problems facing young people with a mental illness
23	C.A.L.D.	Culturally and Linguistically diverse people experiencing a mental illness