www.LivedExperienceAustralia.com.auLived Experience Australia LtdANNUALREPORT- 2021 -
2WE REPRESENT THE VOICES OF CONSUMERS AND CARERSWe transform mental health services through lived experience advocacy. We do this in four core areas of activities- advocacy, research, training and collaboration
27Our Projects28Our Finances32Our PeopleTABLEOFCONTENTS0412061408181121From the Chair & Executive DirectorOur Connections About Lived Experience AustraliaOur Advocacy Our ImpactOur Research Our PartnershipsOur Training
FROM THE CHAIR& EXECUTIVE DIRECTORThis last year has been a good year for Lived Experience Australia (LEA) despite the concerns and restricons caused by COVID-19. The nancial year to June 2021 has seen us expand acvies and further our partnerships, as mental health has become a dominant focus for Australians coping with the pandemic. This has provided opportunies to think dierently about how we go about our work, and I am proud of our achievements.We have established four main arms to our operaons. These are advocacy, capacity building training, lived experience research and collaboraon. There has been signicant uptake within these areas, and we are privileged to have the opportunity to support our community in this way. Our training program has expanded exponenally. We are thrilled with this and are now oering capacity building opportunies JANNE MCMAHON OAMto many people with lived experience across Australia. We also provide sta training to support those within the health system to understand the value and importance of partnering with consumers, families, and carers. We are pleased to connue our partnership with the Royal Australian and New Zealand College of Psychiatry (RANZCP) in providing our Annual Award for Best Pracce in Consumer and Carer Inclusion, to a Trainee. We congratulate Dr. Catherine Torning, the 2021 winner. This award is presented to clinicians who undertake LEA’s online training modules focused on consumer and carer inclusion and submit a reecve piece about how the learnings from the modules have changed their clinical pracce.Our experse and lived experience are highly sought aer with approaches from governments, the Australian Commission on Safety and Quality in Health Care (ACSQHC), the Naonal Disability Insurance Scheme (NDIS) and other organisaons to provide lived experience representaon into key policy and reform reviews. LEA has a representave panel of skilled lived experience representaves that we draw on to advocate for the issues and needs of people aected by mental ill health. This nancial year has seen
5thirty-ve LEA representaves posioned on key decision-making commiees and working groups. LEA has also provided twenty-ve submissions to inform the mental health reform agenda, both at naonal and state levels.We have welcomed the opportunity to partner with the ACSQHC and the NDIS in facilitang focus groups, providing lived experience perspecves into their work. These are new partnerships for LEA, and we are pleased to provide the opportunity for people with lived experience to have a direct line of communicaon to provide input in areas that are important to our community of consumers and carers.Our Lived Experience Research Program has risen to new heights over the last twelve months. Two landmark research projects have been undertaken, the ‘Missing Middle’ Reports being by far our largest, and most signicant. There has previously been a lot of talk about the ‘missing middle’ and assumpons have been made about lived experiences, but what has been missing in these discussions is the voice of consumers and carers about their own experiences. The four reports that have come from this research project explore, from a lived experience perspecve, why people do not engage in mental health services, why they disengage, what happens to them when they disengage, and what it would take for them to engage or re-engage with mental health services. Another major research project was to discover people’s experiences of telehealth services for support from psychiatrists. The ndings from this research have informed the naonal discussion about telehealth, and again I am immensely proud that LEA has been able to support our lived experience community with this research and our inuence on extending telehealth psychiatry services.We are a fully lived experience organisaon, with all sta and Directors having a lived experience as a consumer, carer, or both. One area that we have expanded on over the last year is our partnerships such as government organisaons, universies, and mental health services. We relessly advocate for the issues and needs of people with a lived experience. We provide direct lived experience perspecves of both consumers and carers to keep mental health on the agenda. We are responsive to the changes in reforms happening across Australia as the focus on the mental health and wellbeing of all Australians becomes a higher priority for Governments.With only a small team of dedicated and skilled people, we make a signicant impact in mental health advocacy. We have a Board and sta team who bring a wealth of knowledge and experience. These two groups together have a passion to provide a voice for the lived experience community, as both consumers and carers. Our goal is for lived experience to be central in transforming mental health services through reform processes, policy, service planning, delivery, and evaluaon.I want to thank our dedicated people for their strong support and acknowledge the huge eort and passion everyone has given over the past year. I want to thank everyone for having faith in me to drive Lived Experience Australia to where we are today.Janne McMahon Janne McMahon, OAM
6ABOUT LIVED EXPERIENCE AUSTRALIAAs our name suggests, we are a naonal organisaon dedicated to those with a lived experience of mental health concerns, either as consumers, carers, or family members primarily focussed on the private sector. We support and include this lived experience to posively inuence mental health services and outcomes across Australia. LEA is known across all levels of Government as a reliable and reputable source of information, based on our research and experience.
7All of our Directors and Sta have a lived experienceThe acvies of Lived Experience Australia are largely facilitated through its Chair/Execuve Director, the members of the Execuve, Board Directors and our Advisory Forums in Queensland, New South Wales, Victoria, South Australia, Tasmania, the Australian Capital Territory, and most recently again in Western Australia.These acvies include (but are not limited to):• systemic advocacy, providing support and informaon to governments at all levels to support policy change;• encouraging organisaons and mental health providers to include lived experience perspecves in design and delivery of services;• developing sta training in engaging lived experience, so that this becomes commonplace in the workforce;• supporng consumers and carers to develop their skills and condence in advocacy; and• conducng research to determine areas of need for systemic change.Lived Experience Australia is known across all levels of Government as a reliable and reputable source of informaon, based on our research and experience. LEA regularly represents lived experience voices within the media, government inquiries, and provides input into policy development. Members of the Board of LEA and our sta regularly speak at conferences, highlighng and sharing lived experiences. LEA is registered with the Australian Charies and Not-for-prots Commission (ACNC) and is registered as a Health Promoon Charity. We connue to operate with the nancial support of government and other corporate and organisaonal donors. Our Mission Engage, empower, enable choice in mental health.Our VisionTo promote eecve consumer and carer advocacy as the driving force behind all changes in mental health services.
OUR FOCUSTRAININGAll our training is developed and facilitated by consumers and carers with a lived experience. It supports capacity building of consumers, carers and clinicians at all levels. ADVOCACYWe inform and enhance policy through national and state forums, committees, and groups by providing access to a pool of lived experience representatives.RESEARCH Our research is 100% lived experience led and reects the voices of consumers, families and carers. It is translational in changing policy and practice.COLLABORATION We work with a wide network of partners including the Australian Government on national projects aimed at improving mental health services for all Australians.
9OUR IMPACTENGAGEEMPOWERENABLE CHOICEOur vision is to engage, empower and enable choice in mental health care. Here are some examples of our impact over the past 12 months. We engaged with and gave a voice to 535 consumers, family members and carers in our “Missing Middle Report”. This report was circulated widely to media, hospitals, government, and mental health praconers. The report’s video promoon has been loaded 2,497 mes on Vimeo alone, with the launch video being loaded an addional 306 mes. “These reports are signicant. I will be taking these reports from Lived Experience Australia and including them with the suite of documents used to inform the reform agenda” - Chrisne Morgan, Prime Minister’s Naonal Suicide Prevenon Adviser and CEO of the Naonal Mental Health Commission.“This is the rst me I have ever been asked why I stopped using a service and what it would take for me to come back to it” - Consumer feedbackWe empowered 24 consumers and carers who parcipated in our 6-month Communies of Pracce Program (CoP) aimed at building the skills and capacity of lived experience advocactes to extend and enhance their contribuons to lived experience advocacy. We also empowered 12 consumers and carers to undertake Cercate IV in Mental Health Peer Work through the provision of sponsorships. “It gave me a renewed sense of passion to keep up my role in advocang on a wider scale; within the community and systems to create larger and more sustained change” - CoP parcipant“I picked up praccal skills on becoming a beer advocate” - CoP parcipant“[I enjoyed] meeng other advocates and being able to reect with them about issues and experiences” - CoP parcipantThrough our Telehealth Research, we received input from 187 consumers and carers, about the value of telehealth psychiatry services. We submied a report to the Department of Health which support-ed their decision to extend telehealth psychiatry services. “Telehealth should remain as an opon for people who can’t always physically get to the appointments due to the nature of their condion.”“My psychiatrist is based in Sydney, and I am in a regional town where I have yet to nd an appropri-ate psychiatrist. Without telehealth consultaons, I wouldn’t be able to access psychiatric care.”
10OUR OBJECTIVESLived Experience Australia has the following objecves:• Equity and access to private clinical services for mental health consumers and carers;• Responsive, accessible, and appropriate treatments for people experiencing mental illness;• Adequate and appropriately trained health workforce;• Improve the culture for those experiencing mental illness and promote choice;• Improve the well-being of people impacted by mental illness: consumers, families and carers;• Empower consumers and carers to ulize all means to maintain their mental health;• Promote the value of consumer and carer engagement and inuence within the community;• Share knowledge and informaon to enhance recognion of rights and overcoming discriminaon;• Maximise lived experience parcipaon in mental health policy, planning and decision making;• Provide avenues for developing and represenng unique consumer and or carer perspecves on mental health policy, planning and decision making; and• To do all within our power to support the lived experience community. In all the work that we do, our connection with people is the most important
11We value the partnerships we have developed over the years. This year we have connued strategic and collaborave relaonships with the following organisaons:1. PHN - Mental Health Lived Experience Engagement Network2. Mental Health Carers Australia3. HelpingMinds4. Royal Australian and New Zealand College of Psychiatrists5. Australian Psychological Society 6. Australian Private Hospitals Associaon Mental Health Commiee7. Australian Private Hospitals Associaon Data Reporng and Analysis Management Commiee8. Australian Commission on Safety and Quality in Health Care9. Australian Government Department of Health10. Australian Government, Department of Health, Private Health Industries Branch 11. Naonal Mental Health Commission12. Naonal Disability Insurance Agency, Mental Health13. Mental Illness Fellowship Australia14. SA Mental Health Commissioners 15. QLD Mental Health Commission16. Equally Well 17. Australian Digital Health Agency18. Naonal Mental Health Consumer and Carer Forum19. Mental Health Coalion of SA20. Mental Health Australia 21. Mitchell Instute, Victorian University22. SANE AustraliaOUR PARTNERSHIPSLEA Execuve Director Ms Janne McMahon (le) pictured with Senator the Hon Linda Reynolds CSC, Minister for the Naonal Disability Insurance Scheme (NDIS)
121,643SUBSCRIBERSOUR CONNECTIONS1,001FOLLOWERS75FOLLOWERS187FOLLOWERS1,048DOWNLOADSIn the 2020-2021 period, Lived Experience Australia commenced acvity on three social plaorms, Facebook, Twier and LinkedIn. Communicaons with these three social networks help us to engage with people on a more regular basis and provide me sensive informaon quickly. We use these networks to further distribute informaon about our own training and webinars, research, and advocacy, as well as sharing other resources we believe will support our followers or engage people with our lived experience community. SOCIAL NETWORKSCommencement Date 1 November 20201 September 20201 March 2021TOTALSFollowers – 30/06/21 1,001 187 75 1250Posts 101 22 36 159Reacons 814 107 32 953Shares 170 13 16 199Engagement 6,459 201 84 6,744Link Clicks 574 131 17 722Post Reach 20,307 Data unavailable Data unavailable 20,307+Impressions 35,135 2,695 5,621 43,451Most acve gender Female Data unavailable Data unavailableMost acve age group 45-54 Data unavailable Data unavailable
13Lived Experience Australia currently has an email database of 1643 contacts, of which 1270 idenfy as Consumers or Carers. The remainder are classied as ‘other’ which includes mental health professionals, sta, people with a general interest in mental health reform or those who have not classied themselves as consumers or carers. Our eNews alerts and subscriber campaigns have an average open rate of 31.5%, with 5% clicking on links within the campaign sent. Our unsubscribe average is at 0.2%. This compares favourably with the averages across Australia. This tells us that the informaon we provide to our subscribers is relevant and of interest (NB: The soware LEA uses does not record Click to Open Rates as shown in the table below). LEA’s email open rates also compare favourably against the worldwide industry average for non-prots (25.5%). We are pleased that we can reach our community in this way and strive to connually improve these results by reviewing our content and number of campaigns sent. We want to ensure that the useful and praccal informaon we share reaches as many of our lived experience community as possible. SUBSCRIBERSSUBSCRIBERSOur State Advisory Forums are a key mechanism through which we idenfy the issues and needs of consumers and carers at the grass roots level. While face to face meengs have been dicult this year due to COVID-19 we have moved to virtual meengs when physical meengs were not possible. State Date LocaonQLD 10.10.20 Greenslopes Private HospitalNSW 19.11.20 Via Zoom VIC 28.6.21 Via ZoomTAS 12.11.2018.5.21Hobart, Old Woolstore HotelSA 15.10.2018.2.2115.4.21 Via ZoomSTATE ADVISORY FORUMS
Advocacy is important to us because it gives us a greater empathy and understanding of the needs of those we serve. We try to balance lived experience of consumers and those of carers to ensure all voices are heard in our representaons. Each Director has responsibility for holding Advisory Forums within their state. They facilitate forums that provide us with up to date, grass roots consumer and carer perspecves on issues of state and naonal signicance. Directors also provide feedback and input on the current acvies of LEA. While we meet many individuals, and hear and appreciate their unique experiences, the State Advisory Forums are designed to provide systemic rather than individual advocacy. The State Advisory Forum objecves are as follows.1. Idenfy issues of naonal signicance for consumers and carers in various sengs.2. Provide feedback to State Directors on current acvies and priories.3. Foster links with established consumer and carer groups in private hospitals.4. Promote the interest and involvement of the State Advisory Forum.5. At each Board Meeng, Directors report on the forums and discuss any issues arising from them.OUR ADVOCACYWe balance the lived experience of consumers and those of carers to ensure all voices are heard in our representations
15One of the main reasons we exist is to use our lived experience to transform mental health services. Representaon at high level is a way that we achieve this, and we have been pleased to represent the lived experience community at thirty-ve specic commiees/working groups/workshops during 2021/22 including:Department of Health 1. 5th Naonal Mental Health and Suicide Prevenon Plan MHERP 2. Primary Mental Health Care Data Reference Group 3. Primary Mental Health Care MDS Consent Workshop 4. Mental Health Technical Reference Group and consultaon for the Naonal Survey of Mental Health and Wellbeing 5. Naonal Mental Health Policy Renewal Project Steering Group 6. Reducing sgma and discriminaon Project 7. Psychiatry Liaison Implementaon Group 8. Primary Health Networks Mental Health Reform Lead Site Project 9. Australian Digital Health Agency, Mental Health Resource Group 10. Priority Area 6 of the 5th Naonal Mental Health and Suicide Prevenon Plan involves the reducon of sgma survey and inclusion in interview 11. Psychiatry Liaison Implementaon Group (DoH)12. Australian Digital Health Agency, Mental Health Resource GroupDepartment of Social Services 13. Mental Health Working Group Stakeholder Reference Group (NDIA and DSS) Australian Commission on Safety and Quality in Health Care 14. 2nd Edion: Naonal Safety and Quality in Health Services Standards Commiee 15. Naonal Mental Health Standards Commiee 16. Naonal Safety and Quality Community Mental Health Service Standards Advisory Group 17. Paent Advisory Group18. Paent Reported Outcome Measures Expert Advisory CommieeMental Health Commissions 19. Naonal Mental Health Commission, COVID-19 Response Plan 20. Naonal Mental Health Commission/NHMRC COVID-19 aects 21. Naonal Mental Health Commission, Peer Workforce Guidelines Commiee 22. SA Mental Health Commission, State-wide Peer Workforce Taskforce 23. QLD Mental Health Commission, development of a peak consumer organisaon for Queensland ongoing suggesons from our own experience. Other organisaons24. Board Director, consumer posion, Mental Health Australia unl 18 Sept, 2020 25. Australian Private Hospitals Associaon Mental Health Commiee 26. Australian Private Hospitals Associaon Private Hospitals Data Reporng and Analysis Service 27. Australian Private Hospitals Associaon Queensland Branch 28. RANZCP Alcohol Harm and Mental Health Working Group REPRESENTATION
29. RANZCP MBS Working Group 30. RANZCP SA Branch Commiee 31. Mitchell Instute, Victorian University – Self Care Expert Advisory Group 32. Australian Psychological Society Expert Reference Group, online training for mental health workforce in residenal aged care facilies.33. Equally Well Implementaon Commiee34. SA Statewide Peer Workforce Taskforce35. Implementaon Advisory Group, MIFA’s Discover Network Project36. RANZCP Community Collaboraon Commiee37. RANZCP Commiee for ResearchWe made 25 formal submissions to provide lived experience perspecves during the nancial year 2020-2021 including:Naonal Submissions: 1. Naonal Safety Priories in Mental Health 2. Royal Commission into Aged Care Quality and Safety 3. Deputy Chief Medical Ocer for Mental Health Dr Ruth Vine-MBS Item for COVID 19. 4. Australian Banking Associaon Consultaon Paper: Use of credit cards for gambling transacons 5. NDIS Mental Health Stakeholder Reference Group 6. NMHC Naonal Workplace Iniave Framework 7. Department of Health: Adult Mental Health Centres 8. Naonal Suicide Prevenon Taskforce 9. NMHC Vision 2030 10. Naonal Suicide Prevenon Interim Report 11. Pre Budget Submission 202112. Private Mental Health Insurance Reforms13. Response to the Producvity Report14. COVID-19 rollout and serious mental illness15. Select Commiee on Mental Health and Suicide Prevenon16. Joint Standing Commiee for the NDIS17. Naonal Preventave Health Strategy18. NDIS Psychosocial Recovery 19. ACSQHC Safety and Quality Standards for Community Managed OrganisaonsSouth Australia Submissions: 20. Phase 1 Youth Treatment Orders21. SA Suicide Prevenon Bill22. SA Responses for Urgent Mental Health Care Centre23. Submission South Australia Controlled Substances (Condenality and Other Maers) Amendment Bill 2020 24. Submission South Australia Health Care (Governance) Amendment Bill 2020 25. SA Pre-Elecon Submission 2022 SUBMISSIONS
1737FORMAL REPRESENTATIONS25SUBMISSIONSNATIONAL PRESENTATIONSNATIONAL WORKSHOPS1. Equally Well webinar2. RANZCP May Congress 2021, Alcohol use and mental health3. Mental Health Coalion of SA, Peer Workers, April 20214. Naonal PHN Mental Health Lived Experience Engagement Network Annual Forum, 20211. Primary Health Care 10 Year Plan Roundtable (DoH)2. Australian Digital Health Agency (the Agency) and CHF focus group toolkit for myHealth record3. NMHC Research brief for the Summer Communicaons 2020-2021 workshop - #InthisTogether. 1. Such welcome news! Budget announcements 7 October 20202. Telehealth, ‘a game changer’3. The Missing Middle, ‘Our voices’4. Telehealth, ‘a life saver’5. Budget 2021MEDIA RELEASESInuencing mental health policy and reform
OUR RESEARCHFrom Lived Experience Australia’s Director of Research, Professor Sharon Lawn.Lived Experience Australia’s research has four primary aims:1. To listen to consumers, their families and carers, regarding issues that aect them.2. To share the knowledge that we gain from our research with the mental health community, services, and government policy makers.3. To inform our systems advocacy.4. To make a dierence across all parts of the mental health system, parcularly the interface between lived experience and provision of support, care, and treatment.All our published research and peer reviewed papers can be found on our website at: www.livedexperienceaustralia.com.au/research During the 2020-2021 year, we have achieved our research aims through our conduct of three signicant naonal research projects.Our research comes from consumers, families, and carers. We present this in a way that ensures they are heard.
19This involved a naonal survey asking people with mental health lived experience about their experiences of engagement and disengagement with mental health services, and what they would need to re-engage with services to support their mental health and wellbeing.This research has helped us to understand why and how people fall through the gaps and what is needed to address this problem. We found that trusted, respecul relaonships in which a partnership approach, meaningful inclusion in decision-making about care, and a belief in the person’s capacity and hope for recovery were signicant in improving these processes.www.livedexperienceaustralia.com.au/research-missingmiddleTHE MISSING MIDDLEWe undertook this research to understand what people with mental health lived experience thought of the use of telehealth mental health psychiatry service provision. These insights were parcularly important and mely, given the many months of COVID-19 restricons which have required health services to replace their usual face-to-face care with online telehealth psychiatry opons. The research was undertaken in collaboraon with the Royal Australian and New Zealand College of Psychiatrists.We found that access to and use of telehealth psychiatry services was largely posive. Many people idened that without access to this technology during COVID-19, they would have had no other support available. Many addional benets included convenience, signicantly cung down travel and waing mes, and reduced anxiety for people who struggled to leave the house. Challenges were also highlighted with the technology itself, people’s skills in using the technology, the impersonal nature of telehealth versus face-to-face support, and some privacy concerns.www.livedexperienceaustralia.com.au/telehealthpsychiatryTELEHEALTH PSYCHIATRYFebruary 2021Telehealth Psychiatry ConsultationNational Survey ReportThis involved a naonal survey consultaon on the potenal service model for these Centres, the rst of which opened in South Australia early in 2021. The research was undertaken for the Department of Health.We found general support for the model, and the principles and assumpons underpinning it. Having immediate access to support to enable earlier intervenon rather than requiring access to an emergency department was highlighted by both consumers and carers as a crical component for the AMHCs. Access to peer workers for both consumers and carers was also idened by many as a key service requirement.hp://bit.ly/AMHCResearchADULT MENTAL HEALTH CENTRESCONSULTATION REPORTTO INFORM THE DESIGN OFNEW ADULT MENTAL HEALTH CENTRES
We have strong relaonships with several professional mental health bodies and consult with these organisaons to ensure lived experience perspecves are included in our research and advocacy. This also ensures our research is translated into pracce to have real impact for change in the community.We also have strong relaonships with several universies and connue to provide lived experience perspecves (as a chief invesgator or partner organisaon) to a range of their naonal mental health projects. These research endeavours include projects focused on physical health and mental health, the NDIS, self-care, borderline personality disorder, healthy lifestyles, and suicide prevenon.This year has been a busy one for our research partnerships, with LEA joining research applicaons to the Naonal Health and Mental Research Centre, Australian Research Council, Medical Research Future Fund and Suicide Prevenon Australia.The following tables LEA’s University collaboraons this year:Large Scale University Projects – Category 11. RMIT University, Borderline Personality as Social Phenomenon (ARC grant)2. University of Newcastle, Physical health and mental health (MRFF grant)Small Scale University Projects – Category 2-33. LaTrobe University, Psychosocial Disability and the NDIS: Research Forum Improving Health and Wellbeing Outcomes for People with Cognive Disability: The Role of the NDIS4. UNISA – Helping Australians to beer manage stress, adapt to change and improve their mental health with a free, tailored, online, self-help tool.5. University of NSW, Brain and Mind Centre – naonal modelling6. Mitchell Instute / University of Victoria - Self-Care for Health: A naonal policy Blueprint7. University of Melbourne - Melbourne School of Psychological Sciences, Ethics and decision making in consumer leadership: A Qualitave Delphi Study8. Mitchell Instute - Consumer and Carer Expert Working Group ‘Being Equally Well’Research Posions1. Latrobe University, NDIS Research Panel2. Flinders University and BPD Cooperave - PHD student (Suicide Prevenon Australian Scholarship) – BPD, suicide, and suicidal distress (accessing our data from 2 naonal surveys – Stakeholder Commiee)3. UNISA – Development of online resources for mental health and wellbeing (working group)RESEARCH PARTNERSHIPS
211,863CONSUMERS &CARERS ATTENDING1,005STAFF ATTENDINGFrom Lived Experience Australia’s Director of Training, Mr Darren Jiggins. We have made signicant progress in developing our Training Program over the past year. This program set about building the capacity of consumers, carers, and service providers in providing responsive and inclusive mental health services. Training DeliveryDue to the uncertainty around COVID-19, we moved online for our training this year. One of the benets of this is that we were able to record webinars and make them available to others who were unable to aend at the me. This connues to be a resource that can be drawn on into the future. This service has been a success in allowing delivery of these webinars to eecvely be ‘ongoing’ in an ‘on demand’ way that people can access as and when it suits them. We connue to use these recordings, promong them through our social media plaorms and e-News, to allow more consumers, carers, family members, sta, and praconers to access these resources. OUR TRAININGNumber of SessionsRegistered/ AendedWebinar Recording AccessedTotal Accessing/AendingConsumer & Carer Training 31 1,128 735 1,863Sta & Praconer Webinars 9 683 322 1,005Totals 40 1,541 1,048 2,868TRAINING SUMMARY
22CONSUMER & CARER TRAININGOur Training Program for consumers, carers, and family members aims to develop personal advocacy skills. We delivered six 45-minute webinars. The webinars were hosted by LEA sta with their own consumer and/or carer lived experience. Each webinar also had a guest speaker with subject matter expertise to provide their input into the topic.The subjects covered in this series included: • Advocacy Skills: Top Tips – Guest speaker: Christine Kaine, LEA• Looking after yourself – Guest speaker: Peter Farrugia, Flourish Australia• How to be heard – Guest Speaker: Mark Chenery, Common Cause Australia• Preparing for Advocacy: Brieng & Debrieng – Guest Speaker: Sarah Sutton• Keeping the Enthusiasm Going – Guest Speaker: Elida Meadows• Self-reection and self-evaluation – Guest Speaker: Lorraine Powell, LEAThis series included 1,096 connections with the audience in shared learning via the webinar platform. Participants could contribute to the discussions and engage with the speakers. Participants were provided with evaluation forms to complete which help us to make improvements and ensure future topics are the areas of highest need and relevance. Mark Chenery oered great solutions to connecting with an audience. His techniques for persuading an audience to accept a desired outcome were excellent.I could see how authentic the presenter was, and that he walked the talk. Peter is an inspiring role model and he showed steadiness and vulnerability, a very powerful mix.WEBINARS
23It conrmed for me that I am doing OK and [reminded me] to self-reect on the wins no matter how small rather than ruminate on the “failures”. I came away feeling that I am not alone and that the advocacy I am doing is worth doing. The strategies for self-reections, self-evaluation and self-care were especially useful.We developed a ‘Communities of Practice’ Advocacy Skills Building Program with a shared learning approach which is held monthly over a 6-month period commencing in February 2021. Participants join the program via an application process. We received 117 applications from consumers and carers to join the program, from which 24 were successful. This demonstrates a signicant need for this type of learning, and we are aiming to provide more opportunities next year. This 6-session program is delivered via Zoom with pre-session materials provided each month to enhance focused discussions on topics for eective advocacy. While training was based on workshop topics, the exibility of a community of practice led to a tailored delivery of content to meet the learning needs of each group. COMMUNITIES OF PRACTICEWe delivered 8 free Advocacy Skill Builder series for Consumers and Carers who wanted to take the next step in their advocacy. The workshops enhanced participants’ skills for mental health advocacy to make a positive impact on mental health services. The program was delivered via an online platform over two x two-hour sessions.WORKSHOPSThe Community of Practice has helped me feel more empowered and condent and I now have a toolkit I can use in my advocacy
24STAFF & PRACTITIONER TRAININGOur training program for clinicians and service providers is focused consumer and carer inclusion, in line with the National Safety and Quality Health Service Standards (Part 2: Partnering with Patients in their own care). I coordinate a consumer representative program and I learnt a few tips and tricks to look at including more formal debrieng as well as encouraging better brieng from committee organisers.The recognition that there is a distance between understanding how sta could be engaged in advancing standard 2 objectives, and the reality of embedding sta (and patient) representation in all levels of planning and decision making.Listening to the practical advice by Enaam Oudih and learning about developing cultural competency while engaging with consumers from diverse backgrounds.We delivered four consumer and carer engagement workshops for sta and practitioners in response to extensive consultation with private hospitals with psychiatric facilities across Australia. Sta identied the key topics of need, LEA sta then designed and delivered the workshops online, over a 2-hour session. WORKSHOPS
25Sandy gave practical examples of consumer input into Health Service delivery, as well as some great success stories.We provided ve sta webinars covering as follows:• Taking inspiration from Standard 2 – Guest Speaker: Christine Gee, CEO, Toowong Private Hospital• Insights into Accreditation – Guest Speaker: Sandy Thomson, Director, GovernancePlus• CEO Perspectives on Standard 2 – Guest Speaker: Christine Gee, CEO, Toowong Private Hospital• Consumer and Carer Inclusion – Guest Speaker: Peter Selar, CEO, Delmont Private Hospital• Engaging with Consumers and Carers from diverse communities – Guest Speaker: Enaam Oudih, Practice Manager, PEACE (Relationships Australia)The webinars achieved 622 connections with the audience in shared learning. Participants could contribute to the discussions and engage with the speakers. Participants were provided with evaluation forms to complete which supports us in improving our training and focusing our training oering in areas of highest need. WEBINARSThe information mentioned was very relevant to my profession as a Mental Health nurse.
26OUR TRAINING AWARDSOur award for ‘Best Pracce in Consumer and Carer Inclusion’ for Trainees was presented at the May 2021 RANZCP Awards Ceremony in Hobart. The award is presented to a RANZCP psychiatry trainee who completes all 5 LEA developed e-learning modules and submits the best reecve piece around Collaboraon, Communicaon and Cooperaon between Health Professionals. Congratulaons Dr Catherine Torning, 2021 Winner of LEA’s Best Pracce in Carer Inclusion Award at the RANZCP Awards Ceremony (pictured below). Dr Torning completed our 5 X Collaboraon, Communicaon and Cooperaon Modules.We are now oering a second Lived Experience Australia Award for Clinicians. This award is available to clinicians and sta working in private psychiatric hospitals. The award will be presented to a clinician or sta member working in a private hospital who undertakes LEA’s online training modules focused on consumer and carer inclusion. Part of the requirement is that they submit a reecve piece about how the learnings from the modules have changed their clinical pracce. “These modules encouraged me to reect on how to undertake recovery-oriented pracce which resulted in me looking further than just the consumer, towards their primary and secondary carers and extended care network.”
27Lived Experience Australia in partnership with Mental Health Carers Australia connues to manage and maintain an online library for health professionals to support engagement with families and carers in mental health. The library includes a large collecon of praccal resources, fact sheets, research, online training, legislaon, videos and more and is free to access. The library is currently funded unl 31 December 2021 by Mental Health Carers Australia and can be accessed via www.workingwithfamiliesandcarers.com.auCARER GUIDE ONLINE LIBRARYLived Experience Australia developed an online portal to enable health praconers and organisaons who are using the Praccal Guide for Working with Carers of People with a Mental Illness to self-assess against each of the partnership standards. The portal provides organisaonal level reports to show how an organisaon is progressing against each of the partnership standards. This year we connued to provide access to this portal available at www.carerguide.com.au This portal is currently funded unl 30 June 2021 by Mental Health Carers Australia and can be accessed via www.carerguide.com.auCARER GUIDE SELF-ASSESSMENT PORTALLived Experience Australia connues to provide a website to support consumers and carers access to local support services and resources that specialise in Borderline Personality Disorder (BPD) in South Australia. This site also provides a range of resources and links for clinicians to support them in working with people with a diagnosis of Borderline Personality Disorder. This website can be accessed via www.bpdsa.com.auBORDERLINE PERSONALITY DISORDERSA SERVICES WEBSITEOUR PROJECTS
OUR FINANCES - TREASURER’S REPORTThe COVID-19 pandemic has meant another year with a dierence for us all. Like many organisaons, it has impacted our ability to go about our usual advocacy and project acvies, but also oered new opportunies to connect with each other.As Treasurer I monitor the nancial aspects of Lived Experience Australia Ltd together with the Chair/Execuve Director and I am a joint signatory to the banking accounts. All LEA transacons are processed through MYOB by our Manager, Administraon, Communicaon and Projects who then forwards the reconciled bank statements to me for review to ensure all transacons are scrunised and approved.This year our accounts have been audited by HLB Mann Judd Audit (SA) Pty Ltd.The Chair/Execuve Director has delegated authority to make all nancial decisions for the organisaon in line with budgets or funding agreements including the selecon of stang and contractors, seng appropriate SHARON LAWNremuneraon, and making necessary roune payments as invoices come to hand. Any individual purchases that are more than $20,000 not already approved in the budget or required in funding agreements are taken to Execuve Board Members for approval. This method allows transparency of the accounng and nancial system. Any related party transacons are presented to the Board for approval prior to engagement. The Manager, Administraon, Communicaons and Projects provides a copy of the quarterly Prot and Loss Statement to the Board. A budget update and presentaon of Lived Experience Australia Ltd.’s nancials including progress against the budget are discussed fully and openly at all meengs of the Board. Any risks related to our nancials, and conngencies related to those risks, are also considered at each Board meeng.During the 2020-2021 nancial year and because of COVID-19, Lived Experience Australia Ltd.’s budget was aected largely due to border shutdowns which restricted travel to conferences and several meengs related to our naonal advocacy. However, we moved much of our work online ensuring that we were able to meet our funding requirements and strategic objecves. We saw increased insurance premiums this year; however, I am pleased to report a surplus in the main due to donaons, training programs and cost ecienciesI refer you to the Auditor’s Report and Financial Statements on the following page.Sharon LawnSharon Lawn, Treasurer
30OUR FINANCIAL SUPPORTERSAUSTRALIAN GOVERNMENT, DEPARTMENT OF HEALTHWe value our associaon with the Commonwealth, and will connue to provide input into policy, inquiries, consumer and carer engagement and gaps as we become aware of them.We would not be able to do what we do without this funding and are grateful to have their commitment through unl 30th June 2022.ROYAL AUSTRALIAN & NEW ZEALAND COLLEGE OF PSYCHIATRISTS (RANZCP)The RANZCP has been a nancial contributor to Lived Experience Australia’s acvies since July 2004. We are grateful for their commitment to supporng our ongoing work.AUSTRALIAN PSYCHOLOGICAL SOCIETY (APS)The APS has been a nancial contributor for many years. They are a strong supporter, and we are grateful for their commitment to supporng our ongoing work. AUSTRALIAN PRIVATE HOSPITALS ASSOCIATION (APHA)We value our close working associaon with the APHA in bringing consumer and carer experiences and perspecves into the work undertaken by private psychiatric hospitals. Their support is invaluable, and we are grateful for their commitment to supporng our ongoing work.Without ongoing nancial support, LEA would be unable to continue our activities. We thank all our donors for their support. HOW WE USE OUR FUNDING AND DONATIONSWe focus on what maers most and keep our operaonal overheads to an absolute minimum of only 11% of our total income. You can be sure that funds provided to us are focussed on direct service provision.
31It is through the vital support of individuals and organisations that we can continue our work. CORPORATE SUPPORTERSTo enhance our impact on mental health services, our partnerships with corporate supporters are essenal. When you see the value in supporng consumers and carers with a lived experience of mental ill-health, you understand why we do what we do. If your organisaon sees value in supporng lived experience consumers, families and carers and wants to contribute to improved mental health services in Australia, contact us by phone 1300 620 042 or email email@example.com to discuss what we can achieve together. JOIN US! BECOME A ‘FRIEND’ OF LEAAs a ‘friend’, we engage with you directly on maers of importance for consumers and carers. We communicate with our friends directly through our mailing list, we seek your input into surveys and research, and we share our news and results with you directly. This is extremely valuable to our work as the greater our network of ‘friends’ the more we learn about dierent lived experiences. We are then able to advocate with increased data and stronger anecdotal evidence. Joining Lived Experience Australia as a ‘friend’ is completely FREE and is available to consumers, carers, peer workers, clinicians, and other professionals. Join at www.livedexperienceaustralia.com.au/join-now CONTRIBUTE TO OUR MISSIONAs a registered Health Promoon Charity, our work connues due to the amazing support of donors. While most of our funding is from Government, addional support allows us to go the extra mile in what we do. This helps us transform mental health services across Australia through our advocacy, and support mental health consumers, carers, sta, and praconers. Individual donaons are welcomed – we appreciate every donaon however big or small. These donaons are especially meaningful to us, as we know they oen come with stories of lived experience, and we appreciate learning about your journeys as you contribute. To support our work as an individual go to www.livedexperienceaustralia.com.au and click on the ‘Donate’ buon.facebook.com/LivedExperienceAustraliatwier.com/LivedExpAustlinkedin.com/company/LivedExperienceAustraliaFOLLOW US ON SOCIAL MEDIA
32I have a living experience of OCD, and acceptance of this illness has helped me make lifelong connecons with people living life like me. The greatest mes in my journey were as a regular member of an OCD self-help group in the 1990s. I rst encountered LEA in 2006 when I was aending State Forums. I now work closely with private hospitals, consumers, and carers across Australia, as the Tasmanian Director for LEA. I am very excited about the current rollout of the ‘Head to Health’ adult crisis community hubs. Having been a consumer representave on this iniave I see this program as a great step forward in the use of a Lived Experience workforce to connect with people in crisis in a seng outside of hospital emergency department sengs. I was previously advocang for mental health system improvement through my lived experience role in leading the development of the Consumer Parcipaon Framework for Southern Mental Health in Adelaide (2004-2008). While I have my own lived experience as both a consumer and carer, I believe that research is an extremely valuable tool in providing evidence of the need for consumer and family inclusion in all things that impact our lives. A quote I love is: “Never doubt that a small group of thoughul, commied cizens can change the world; indeed, it’s the only thing that ever has.” (Margaret Mead). I truly believe this applies to LEA. Together, we can change the world for those with a lived experience of mental ill-health. I have been a consumer mental health advocate since 1997. I founded LEA in 2002 because I realised there was no organisaon represenng the issues and needs of consumers, carers, and families within private mental health services. I felt a real need to ll this gap. As someone who has experienced mental ill-health since adolescence, I am truly passionate about ensuring that services are designed in collaboraon with those who have a lived experience. We are the ones who know what it is to live with mental ill-health and can provide the most valuable insights into how services can work for us. We cannot become desensised to the needs of those experiencing mental ill-health any more than we can ignore someone in front of us with a physical disability.MS JANNE MCMAHON CHAIR & EXECUTIVE DIRECTOROURPEOPLEPROF SHARON LAWNDEPUTY CHAIR, TREASURER, DIRECTOR OF RESEARCHMR DARREN JIGGINSTAS DIRECTOR & DIRECTOR OF TRAINING
33My experience as a mental health carer began 20 years ago when a close family member became unwell with a severe and persistent mental illness. It was not a role that I was trained or prepared for, and privacy and condenality consideraons made that role even more challenging. Aer many dicules my dearly loved consumer has reached a stage of success and joy in life which has made those hardships easier to forget. I have been acve as a mental health carer advocate since that me, starng when I was asked to join the Strategic Execuve Commiee of ACT Mental Health and progressing to the Naonal Register of Mental Health Consumers and Carers among other commiees. I began my experience within the mental health sector when my son became unwell with a mental illness during his early teens. It was during this me, when we were trying to get appropriate help, that I was struck by varying barriers and obstacles in this shared experience both as a carer and consumer. I have worked for over 30 years in private hospital sengs, including 13 years as a Consumer/Carer representave in a private psychiatric hospital. In advocacy, I always have favoured supporng a person to nd their voice. Listening to their concerns and gently encouraging them to arculate the cause for themselves. I started working with LEA aer being nominated by the CEO of a private hospital I had been working with, where I was a consumer advocate. Once I met Janne, I knew that working with LEA would be mutually benecial. I have been with LEA for 10 years now, and I can denitely say that has been true! I connue to work closely with private hospitals across Queensland to provide a consumer perspecve, as well as volunteering on both safety and quality and consumer and carer advisory commiees. Playing social lawn bowls with the love of my life, Margaret, is one of the things I do to relax. We enjoy our me together and it gives me some acvity and good company. MR NORM WOTHERSPOON QLD DIRECTOR & SECRETARYMS HELENE LANGLEYVIC DIRECTORMS JUDY BENTLEYACT DIRECTOR
34Since my youth, I have experienced mental illness and have commied myself towards recovery and staying beer. With my background of having Greek/Egypan parents and growing up in Australia, I provide mulcultural lived experience inclusion for LEA’s programs. I also advise policy makers and stakeholders on the appropriate ways to include and serve the vast mulcultural communies within Australia, ensuring that their voices are on the tables of the decision makers for beer service delivery across the mental health sector Australia wide. I have been a lived experience advocate for over 19 years. My own lived experience started young, then in adulthood I had post-natal depression with each of my three sons. Since then, I have been focused on healing, learning new ways of coping, and recognising my early warning signs. My carer experiences have also been challenging, with my husband and three sons all experiencing depression. In 2015 I lost one of my sons to suicide. This has been a profound experience that has ongoing and lasng impact on my whole family.I’m really proud to have been part of developing the Cercate IV in Mental Health Peer Work content, and one of the rst people in Australia to obtain the qualicaon. In 2011 I recognised that the trauma of earlier childhood years was having a negave long-term impact on my wellbeing. I found eecve clinical care and support through a private hospital that set me on the road to a healthy recovery journey. This also led to the start of my advocacy work. Aer 3 years of service to this private hospital I was encouraged to get involved with deeper advocacy work and give part of my me as the New South Wales Director for Lived Experience Australia. My passion for mental health recovery is to ensure that every person who engages with a service is matched with a mentor or buddy to walk the journey to healthy long-term recovery. MS SIMONE ALLANNSW DIRECTOROURPEOPLEMS LORRAINE POWELLWA REPRESENTATIVEMR EVAN BICHARAMULTICULTURAL REPRESENTATIVE
35My role is to make sure we are spreading the word about what we are doing, and to make sure all our communicaons are ‘on message’ and meeng the needs of our community. My lived experience comes from childhood trauma and physical abuse, leading to severe depression. Going through treatment for this helped me connect the dots to the causes and develop strategies for improving daily life. The farm where my family lives has been impacted by natural disasters recently. This has been extremely stressful, and I’m fortunate to have an amazing support system which helps me to be available and recognise signs of stress and trauma in my three children and husband, who have also experienced these things. I have over 15 years’ experience in the mental health sector, in addion to providing support to a family member with mulple, complex mental health diagnoses. At LEA, I manage projects, facilitate training courses, write submissions, contribute to research, and nd ways to encourage and build the capacity of mental health advocates. One thing I’d really like to see is all mental health praconers being trauma informed and recovery focussed. Seeing the whole person and not just a diagnosis is SO important. It’s about supporng long term recovery in partnership with the person experiencing mental ill-health as well as those that support them. MS CHRISTINE KAINEMANAGER - ADMINISTRATION, COMMUNICATIONS & PROJECTSMS HEATHER SMITHMARKETING & COMMUNICATIONS OFFICERDR BILL PRINGCLINICAL ADVISOR PROF ALLAN FELS AOPATRONMR JOHN MCGRATH AMPATRONPASSED AWAY 4 JULY 2021MR JOHN MCGRATH, AMJohn McGrath has been a Patron of LEA for the past 10 years. John was a man of integrity, strength, and warmth, and someone focused on improving peoples’ lives, parcularly those of families and carers. It was with great sadness that we heard he had passed away on 4 July 2021, aged 81. We have been grateful to have had John as a Patron.
361300 620 042admin@LivedExperienceAustralia.com.auwww.LivedExperienceAustralia.com.au