Bring Your Voice LIVED EXPERIENCE PERSPECTIVES FOR BETTER MENTAL HEALTH AND WELLBEING 2017 REPORT TO OUR NEW STATE GOVERNMENT

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1 Bring Your Voice LIVED EXPERIENCE PERSPECTIVES FOR BETTER MENTAL HEALTH AND WELLBEING 2017 REPORT TO OUR NEW STATE GOVERNMENT REPORT AND VIDEO AVAILABLE TO SHARE AT

2 1 Foreword: Message from the CEO CoMHWA s Bring Your Voice forum was held on 10 th March 2017, on the eve of the 2017 State election, at Youth Head Quarters Leederville. We brought people together to share ideas for improving mental health and wellbeing, drawing on the wisdom of their lived experience of mental health distress and recovery and contributing to a welcoming peer-led community event. We are proud to present their views through this Report to the new Minister for Mental Health, Hon. Roger Cook MLA, the Mental Health Commission of Western Australia, and to share findings with the broader sector and community. The overarching finding of this report is that mental health solutions lie far more in growing resilience and everyday life opportunities for people affected. While there may be a role for clinical, hospital supports, most of the journey occurs beyond clinic doors, and this is where investment will build better futures. Our accompanying Bring Your Voice Video captures how deeply mental health matters as something worth taking care of within ourselves, and through how we support the people around us. It captures key themes shared on the day. Above all, it highlights the hope and resilience of people who are meeting the challenges of distress and emerging stronger. We hope that Bring Your Voice will further inspire everyone who is contributing to mental health in Western Australia as they continue to affirm recovery and the value of people s lived experience in bringing about greater mental health and wellbeing. Shauna Gaebler Chief Executive Officer CoMHWA

3 2 TOWARDS BETTER MENTAL HEALTH AND WELLBEING Recovery: Medication is not Enough Discover Recovery Support Recovery Put the Person at the Centre of Supports Choice and Control Supports Recovery Reduce Service Stigma Remove Barriers to Person-Led Recovery More of the Right Services and Supports Increase Access to Peer Support Make System Navigation Easier Achieve Greater Inclusion of People with Diverse Needs Create More Safe Spaces for Recovery Innovate Our Emergency Supports Innovate Our Housing Solve Mental Health Together as a Community Remove the Stigma Reach Out to Support Bring More Education to Communities Gain the Skills to Help Change Lives

4 3 Introduction: Towards Better Mental Health and Wellbeing This Report reflects the quotes, comments and themes expressed by people attending CoMHWA s 2017 Bring Your Voice Pre-Election Forum (10 th March 2017). The Forum was held by and for people with past or present lived experience of mental health issues, psychological or emotional distress, united in hope for change and recovery in our services and communities. Sixty six people from a range of ages, backgrounds and walks of life came to share their views. This report has woven people s comments into a narrative. Yet, it is robust because people s stories echo the stories of many who are calling for transformation of what mental health means into a more humane, empowering and compassionated view of what mental health means and what support we need. It shows the importance of recovery for so many people and the common ground and common sense that emerges at times when we meet together and just talk about good mental health for people, as people, who know what it takes because at some point we ve struggled. We wish to acknowledge and thank participants who shared their time to make the forum possible, including participants, volunteers, performers, photographer, videographer and people who shared their stories in our video. Bring Your Voice Forwards- Connect with CoMHWA There will be ongoing opportunities to take these ideas forwards and we look forward to meeting again and working together. Because like the Forum itself, this report is not just about sharing our perspectives but believing it is possible to make changes together. Contact CoMHWA on (08) or admin@comhwa.org.au to find out more about: Writing to politicians about the issues you care about Becoming a lived experience representative, advocate or peer support worker Bringing education to your local community Starting something in your local community to support good mental health Sharing your word of mouth knowledge and recommendations about supports and services

5 4 1. RECOVERY Recovery: Medication Is Not Enough Mental illness is not a failure it s a beginning. A start to discovering something extraordinary about yourself! You care. That is the greatest gift that anyone can have. BRING YOUR VOICE PARTICIPANT Discover Recovery Participants saw recovery as holistic- as about much more than medication, but fundamentally about getting life back on track. Recovery often involves learning, access to opportunities to grow, and tapping into more diverse community supports, such as peer support, advocacy, specialist therapeutic approaches, work and housing supports, past times and social connections. Services can assist people by encouraging and assisting people to locate mental health recovery education options. Consumer participation in the design of services and service policy was also recommended as a key way for supporting uptake of a more holistic approach. Support Recovery Participants were asked to share tips for recovery and wellbeing as part of the event. Their views capture key themes of recovery that are also useful for people supporting others with lived experience, such as families, friends and clinical staff. Recovery involves:

6 5 Developing skills, acceptance and resilience Learning about stigma and discrimination can help people to recognize it and feel more confident to speak up when things aren t right. There are courses that can assist people to get on track through understanding and taking personal steps towards recovery, such as Wellness Recovery Action Planning, Flourish and Peer Zone. Accessing the right supports There is conversation and then there s conversation [really talking about how you feel]. Asking for help is not weak or a sign of failure. It is courageous- seek help from anyone you feel comfortable to. Services can be difficult to navigate but there are information lines that can help. Finding hope through connection Consider participation in peer support or group support, or approach a friend, community worker or family member who will listen. However dark or lonely you may feel, there are others with lived experience who will know, understand and respect you if you reach out. Valuing our individuality and our strength Regardless of what you are suffering, you are still you and you are important. Peer support can help people to recognize that everyone affected is unique, different and has something to give back to others. I want to be able to have a second opinion before being on medications. Put the Person at the Centre of Supports BRING YOUR VOICE PARTICIPANT Good communication empowers people in their recovery. A range of people can be important partners in a person s recovery, including families, doctors, GPs, families (such as children of people with mental health issues), social services, community supports. Communication between these supports should be encouraged by everyone involved, led by the person themselves, and aim to wrap around and assist them as they get their life back on track.

7 6 2. CHOICE AND CONTROL Choice and Control Supports Recovery When I was discharged after a suicide attempt I was not given any information about services, supports or organisations that could have helped in recovery It s been a very lonely journey. Reduce Service Stigma Stigma and discrimination can also occur in a range of services people access, including mental health services and physical health providers. Participants shared what they see as key ideas in services that maintain stigma: seeing only the medical side of things, rather than the whole person, ignoring someone s need for help because they are mental health concerns not physical illnesses, and focusing on people as ill, impaired or deficient instead of on their strengths as individuals. Remove Barriers to Person-Led Recovery Some participants expressed frustration at gatekeeping where the person is not allowed to access housing or employment support because they don t meet defined criteria for recovery. For example, a person may need to agree to a contract to take part in services that aren t of value to them, otherwise they are seen to not be engaging in the service s definition of recovery. Recovery happens through offering, not limiting, people s choice and control to access supports to get life back on track.

8 7 3. BETTER APPROACHES More of the Right Services and Supports Increase Access to Peer Support Accessing mental health support and crisis/homeless housing as a Trans person was next to impossible, even in an emergency (like suicide) I was turned away. Peer support was seen as valuable for offering individual support, assisting with goal settings and for breaking through from medical jargon into everyday conversations that matter. This in turn means services need to increase their employment of the peer workforce (roles where lived experience is an essential, valued job criteria). Achieve Greater Inclusion of People with Diverse Needs Everyone should have access to mental health care, regardless of identity or community. There is a need for greater inclusion of people in our diversity within services, including better access for young people, older adults, GLBTI, CALD and Aboriginal community members. Intersectionality is a principle that recognizes that each person often brings multiple, diverse identities that need to be recognised, valued and accepted when people make contact with services. For example, one participant shared that now that the sector is seeking to address the needs of people with both mental health and substance use issues, it s time to include people with mental health problems and intellectual disabilities, and to hear the views of young people with disabilities in mental health conversations. Make System Navigation Easier Information on mental health services and supports is hard to find, which contributes to these being hard to access. There is a need for one or more centralized information directories. These should focus on people s holistic needs and interests to support their mental health and recovery (e.g. employment, recreation and education), not just mental health services. Other suggestions raised for improving access were: more affordable support, better referral system and greater availability of community support.

9 8 4. SAFER SUPPORTS Create More Safe Spaces for Recovery Safety is where there is no assault, challenge or denial of our identity, of who we are, and we need. It is about shared respect[,] learning, living and working together with dignity and truly listening. DEFINITION OF CULTURAL SAFETY- ADAPTED FROM T. WILLIAMS Safe spaces refers to both safe places for people to live, stay or visit for their recovery, including emergency mental health settings. It also includes safe communities where people can be open and seek support (see Community themes later in this Report). There is also a related concept of cultural safety- the provision of services and supports that respect, value, and work with people s experience of the cultural dimensions of mental health to ensure a safe experience. Examples of cultural aspects of mental health include the experience of shame, stigma or disempowerment that are laden in deficit-based models, and how our understanding of the causes of mental health depends on our upbringing, the meaning we make of distress, and our cultural backgrounds. In general, people feel safe when they feel welcome. Having a peaceful, homelike and comfortable environment, with people who value and welcome people who arrive, can reduce shame and worry about seeking help. Innovate Our Emergency Supports Participants felt that crisis and recovery support should be suited to each individual s needs. There were a range of innovative and practical suggestions for improving emergency support, which included:

10 9 INNOVATING OUR EMERGENCY SUPPORTS A quiet room to feel safe when presented to emergency Respite accommodation as an alternative to hospital Improved mental health recovery and wellbeing education for staff working in acute hospitals Better care after leaving hospital through more services in the community Better portability of key medical information about the person at various points of the health system Improved community referring while in hospital/emergency department Access to consumer oriented recovery plans from day one Consumer and family member access to education while in the hospital Increase in other crisis care supports such as housing and counselling A mental health emergency department Commmunity- based mental health education and wellbeing centres co-located with other community services, to encourage early help seeking, normalize mental health and assist to navigate services Widely available information about how to access emergency support options Peer workers in emergency departments More follow up on discharge to reduce re-admission Better support and communication between a range of health providers, consumers and carers to assist in navigating crisis and recovery support

11 10 Innovate Our Housing Homelessness was described as a huge issue faced by Western Australians. For example, one participant commented that women with mental health issues are increasingly going into women s refuges who are not in domestic violence crisis but are accepted because homelessness is a crisis situation in their lives. Homelessness was acknowledged as something that you are more at risk at if you have mental health issues, but was also seen as causing mental health issues in our community. Participants raised a number of principles to consider in solving the challenges of housing: 1. No one size fits all. People s accommodation needs are individual. For example, accommodation solutions are not necessarily designed to meet whole of family needs, or to support people with mental health and intellectual disability. 2. More than a roof. Moving from homelessness to housing is more than a roof. It also means getting supports in place the person needs to maintain the home and live well in the community e.g. cooking, coping with neighbors, linking in with local community, finding friends, getting out and not being isolated. Moving from longer term shared accommodation to independent accommodation is also more than a roof. It can be scary and you need similar supports to someone moving from homelessness to housing (supports to live well in the community). 3. Re-design more welcoming services. o The housing support system is hard to navigation and having a safe place to go to learn about options and access supports with paperwork is important. o Flexibility, transparency and responsiveness is important to prevent mental health discrimination in housing. One participant commented they felt bullied and excluded in the way they were treated by Department of Housing staff, while another felt they had no information privacy. 4. Design for meaningful living.

12 11 Housing needs to be located and designed for safety, community inclusion and access to local services and supports. 5. Intervening early matters. o o Housing is crisis-oriented where you need to be already homeless and have lost your job, rather than geared to preventing and addressing homelessness early and keeping people in work. Having someone to turn to early when your housing gets stressful can solve issues early before they become major problems that could end in homelessness. For example, some group accommodation and some homeless drop in centres are unsafe for people due to alcohol and other drug use or bullies that try to extort the person. A Housing First/Street to Home approach can prevent people s situations becoming worse. By providing a home this prevents people going into unsafe accommodation that could put them in further crisis. 6. Create more welcoming communities through mainstreaming mental health understanding and acceptance. o Mental health discrimination is hard to quantify but was a common theme in housing discussions, ranging from allocating inappropriate housing, to fearing stigma from flat mates, to being evicted, to having police called to the home due to neighbors not understanding how to respond to someone behaving in an unusual way. o o Many people with mental health issues find it hard to cope with the challenges of private share housing, but rely on these arrangements not to be homeless as they cannot afford their own rental. More options to access affordable single accommodation is needed rather than trying to fit people into co-living arrangements that are not appropriate for their individual needs. Support for people to find and maintain shared tenancies that are socially supportive and accept people with lived experience is important. Share houses can be disruptive, stressful and leave someone feeling stigmatized if they disclose their mental health status. Several participants shared that they would like support in how to talk with and educate their neighbours, landlords and flat mates about their mental health needs, so that they can feel welcome and accepted by those they live near and live with.

13 12 5. WHOLE COMMUNITY Solve Mental Health Together As a Community We need to make sure children are okay and supported when their parents are needing mental health support. BRING YOUR VOICE PARTICIPANT Remove the Stigma Mental health stigma and discrimination has persisted for decades. It affects day to day living, employment and housing and can also be internalized (self-stigma) resulting in feelings of shame and low self-worth. Participants strongly linked stigma to the need for much greater action to educate communities so that people throughout our communities can recognize the signs, accept people with mental health issues, and support people to seek help and take action for recovery. Peers can also experience stigma and discrimination because of diverse backgrounds that compound misunderstanding and exclusion. There may also be a need to educate communities by and for people from diverse backgrounds to support communities to respond better, such as providing education for and by seniors to reach out to seniors, and similar options for and by youth. Peer-based support is vitally important to reducing stigma and as a path to education between community members. Sharing stories of recovery was also nominated as a helpful way to both raise awareness and reduce

14 13 stigma in our communities, encouraging people to reach out and people with lived experience to feel more confident to talk about mental health. Bring More Education to Communities Mental health education should be recovery-focused and build people s abilities to look after their mental health. It should also assist people to reach out to offer support to others, and help people gain the skills to have conversations that reach out, assist recovery and save lives at risk of suicide. Some participants were in favour of educating as early as possible, to build tools for resilience (coping with life s challenges), to reduce the risk of mental health issues later on in life. Too often stigma reduction and mental health education is focused on a medical model of illness. To share a message of recovery, distress may be better understood as a normal response to life challenges with education refocusing on ways to regain resilience, strength and empowerment. Mental health education needs to be accessible in language as well as location, and emphasise the role of selfhelp, families reaching out to help the people they support, and supporting one another as community members. Methods for achieving education that were explored and valued included multi-media, online training as well as face to face, increased media coverage of recovery and more public forums where people could share information and seek assistance. I found a good support network Sometimes people are not aware of what support is out there. Being involved in art programs was a huge part of my recovery. BRING YOUR VOICE PARTICIPANT Reach Out to Offer Support Having someone trusted to reach out to, and a safe place to go to start addressing something that feels stressful or overwhelming, is an important part of recovery for many people. Everyone can play a role in being a safe person to go to- where safety is about showing respect, listening and understanding. It s not about knowing how to solve things necessarily, but being prepared to walk alongside, assist someone or be someone others can confide in.

15 14 Gain the Skills to Help Save Lives Education to develop acceptance and skills was also seen as important to building better social inclusion and equal opportunities to pursue careers, study, to get the right housing, and to have a strong social networks of friends, colleagues and associates. These are the sorts of things we all want to experience and enjoy, but mental health issues can be a barrier to mutual understanding, trust and asking for help when we need it. It was suggested that workplaces and employers could gain greater understanding of how to value and support people to contribute in the workplace, such as through offering flexi-time arrangements. Some participants felt there were more volunteering opportunities than genuine paid work opportunities for people with lived experience, which then keeps people trapped in low income situations. This suggests poor understanding about mental health issues, such as discrimination-based beliefs that people can t fully participate in the workplace. It was also suggested that Centrelink staff could be supported to have a greater understanding that people with lived experience can work with the right supports, but also that people need greater choice and control in paths (and alternatives) to employment as part of their recovery. Overall, education was seen as an important way to help people to feel confident and skilled to navigate what to do and how to have a conversation when mental health issues arise, across a range of life scenarios where good communication is vital to good relationships, fairness and equal opportunities.