SANE welcomes Dr Caroline Aebersold, Mr Dean Duncan and Ms Jade Ritchie to the SANE Board and extends our sincere gratitude to retiring Directors Dr Owen Harris and Dr Lynne Coulson Barr OAM.
A statement from SANE CEO Rachel Green regarding suggested changes to NDIS funding of psychosocial support services.
SANE is concerned to see recent news reports claiming significant cuts will be made to the NDIS to reduce access for Australians living with psychosocial disability.
We know there are already serious gaps in the availability of psychosocial support in Australia. Disability support generally is enormously difficult to access, and this is particularly the case for non-physical disabilities. The Productivity Commission report into mental health estimated there to be at least 154,000 Australians missing out on this critical assistance back in 2020. Recent state-based reviews, such as this one from South Australia, have reinforced the enormous unmet need.
And there are likely to be many, many more as the estimates provided in these reports are based on decades old data as the redesign of the national survey of mental health and wellbeing excluded those living with conditions like schizophrenia, OCD and personality disorders.
For people with a lifelong psychosocial disability, access to the NDIS can be life changing. With psychosocial support, people impacted by significant or complex mental health can lead productive, meaningful and contributing lives. The fight to be included in the scheme when it was established was a significant win for equity and human rights.
So, it is unclear why this group are being targeted particularly for reductions from the scheme, before we have had sufficient opportunity as a community with diverse perspectives on possible solutions to be properly counted or involved. We would be very concerned if disabilities involving mental health are treated differently to physical or sensory disabilities.
It seems premature to be talking of targeting reductions, before we have any information on what the alternative is. It’s not surprising that those relying on psychosocial support and their families who support them are worried.
We know that the NDIS has not worked entirely the way it was meant to. It is clear that reform is needed. However, removing future access for a vulnerable group of people without first designing the alternative is not the right way forward; and there are critical design aspects of the NDIS – such as a long term guarantee of support and choice and control over the type of support that could be powerfully designed in a model for earlier intervention.
SANE strongly urges the Australian Government to listen carefully to those with lived experience and bring them into any discussions involving redesign of services, and it’s important that any discussion of these issues reminds everyone that people with complex mental illnesses and psychosocial disability are, first and foremost, the loved sons, daughters, sisters, brothers and parents in our community.
We are always interested in being part of innovation and ensuring that the voices of lived experience are being heard and we’d welcome Minister Shorten to come and meet with representatives from across the lived experience community to understand the importance of effective psychosocial support and equity and inclusion.
Today, we are excited to launch a new podcast, On the Same Wavelength.
We know that people living with complex mental health conditions experience a disproportionate amount of stigma and discrimination. This co-designed podcast builds on SANE’s long history of innovative stigma reduction activity, working towards our goal of eliminating mental health stigma.
The podcast asks the question: how can we improve outcomes for people living with complex mental health conditions in Australia, and smash the stigma?
Across six episodes, hear from real people, who share their raw experiences – what goes right, and what goes wrong – helping us get on the same wavelength. Their stories are honest, confronting, but hopeful.
The first two episodes are available today, and the remaining episodes will be released every two weeks.
Episodes talk about the impact of stigma in domains including relationships and communities, educational settings, media, healthcare training, workplaces, and the mental health system.
Elise is a psychologist and researcher, and currently works at SANE as Clinical, Quality and Evaluation Advisor. She is passionate about stigma reduction, storytelling, and valuing lived experience.
Meet the guests
Each episode focuses on the unique stories of a SANE Peer Ambassador, who speaks about their experience of stigma and discrimination in a particular life domain. It also includes interviews from people working in the stigma reduction space.
The first two episodes, launched today, feature Peer Ambassadors Evan and Jeanette:
Evan
How can we effectively support others with their mental health? Through his story, Evan (he/him) explores how intimate partners, friends, family, and multicultural communities react to complex mental health conditions.
Mental Health Advocacy has been Evan’s line of work for four decades around Australia, including work as a Mental Health Advocate, a Mental Health Researcher, a Community Educator, a Lived Experience Narrator and a Peer Support Worker.
Evan has primarily worked for the Victorian Transcultural Mental Health for 17 years, advocating for the many multicultural communities around the mental health space, tirelessly engaging, encouraging, empowering and promoting the need for better services around Australia.
Jeanette
Are schools and universities effectively supporting their students? Jeanette (she/they) speaks about the journey through high school and university, while navigating severe anxiety and an emerging eating disorder.
Jeanette is a young, queer, disabled, and migrant person of colour driven to achieving social and economic inclusion through their work with government and not-for-profits. Their diagnoses of Complex PTSD, anxiety, depression and an eating disorder have followed them from adolescence to the workplace, as they developed strategies to navigate their changing environment and complex mental health issues.
As such, they are intimately familiar with the role intersectionality can play in the willingness to seek help and access mental health services. Jeanette strives to elevate the perspectives of marginalised folks in mental health policy and research, and counter stigma and other systemic barriers to accessing services. In their free time, they enjoy indulging their creative endeavours, from writing music to the visual arts.
How to listen
You can listen to On the Same Wavelength via podcast streaming apps like Apple Podcasts, Spotify, and Google Podcasts.
If this podcast brings up any challenges for you, please consider reaching out to Lifeline via 13 11 14 or contact the SANE Support Line via 1800 187 263
Complex PTSD can develop after exposure to traumatic events. These traumatic events often occur in a person’s childhood or adolescence, leading to long-term challenges. Complex PTSD can also be caused by events in in adulthood.
People living with complex PTSD experience symptoms of PTSD such as intrusive memories and physical responses to trauma like disturbed sleep, increased heart rate, or feeling tense. They also experience a range of challenges in managing strong emotions, their identity and self-esteem, and in relationships.
More and more people are understanding and recognising the impacts of complex trauma. Complex PTSD is a relatively new diagnosis. It is included in some diagnostic classification systems, but not others (1).
Re-experiencing the trauma: intrusive memories, flashbacks, or nightmares
Avoiding thoughts, memories, activities, or people that can cause reminders of the trauma
Hypervigilance: Feeling on edge, threatened, or easily startled.
A key difference between PTSD and complex PTSD relates to the types of traumatic events experienced. Complex PTSD usually involves exposure to more extreme or prolonged traumatic events (2).
Plus, there are specific thoughts, behaviours and emotions associated with complex PTSD:
Difficulties with emotions: Having intense emotions that can last a long time, being emotionally sensitive, and difficulty dealing with emotions in a healthy or safe way (for example, some people engage in self-harm, disordered eating, or dissociate)
Negative self-view: Negative beliefs about oneself, such as feeling defeated or worthless, leading to feelings of guilt, shame, or failure.
Problems in relationships: Difficulty feeling close to others and a feeling of distance or being cut off from other people.
The symptoms of complex PTSD overlap with some other diagnoses including borderline personality disorder and dissociative identity disorder.
Some people living with complex PTSD also experience self-harm and suicidal ideation (3).
Complex PTSD is caused by exposure to trauma. These types of extreme and ongoing traumatic events can include abuse or neglect from caregivers, domestic or sexual violence, kidnapping, or surviving wars and natural disasters. Often, the person has little or no control over the situation (1).
It’s important to remember that survivors of traumatic events can have very different experiences. A person’s response can vary based on a combination of factors including neurobiology, genetics, and their past experiences.
Repeated trauma can cause complex PTSD in several ways, such as:
Memories of traumatic events are not always processed like normal memories, so they can be brought up in unexpected and upsetting ways.
Trauma can make it difficult to feel safe in the world, meaning people feel on edge and fearful.
Relationships with caregivers (known as ‘attachment’) can be affected by early traumatic experiences, making it hard to trust others or communicate effectively.
Trauma can create a tendency to have intense, negative moods and emotions that can be difficult to manage – meaning people try to cope in ways that can be ineffective or harmful.
Because complex PTSD is a relatively new diagnosis, it is difficult to know how common it is. The prevalence of complex PTSD in Australia is currently unknown.
Among the general community of American adults, it’s estimated that around 0.6-4% experience complex PTSD (4,5).
If a person is experiencing symptoms of complex PTSD, it is a good idea to first speak with a GP. A GP can provide referrals to mental health professionals who are qualified to support people affected by traumatic events.
Treatment and support are often long-term processes. Many people might need support at different times throughout their life. Ideally, treatment should be trauma-informed – this means treatment is safe, trustworthy, empowering, and collaborative (2).
Ideally treatment should first involve establishing a safe environment where a person can learn skills to manage distress, traumatic memories, and flashbacks. Over time, treatment may also involve processing unresolved aspects of the trauma in a safe space with the help of a therapist. This can involve building up self-esteem, self-compassion, and focusing on a person’s strengths.
Psychological therapies that might be helpful for complex PTSD include cognitive behavioural therapy (CBT), eye-movement desensitisation and reprocessing (EMDR), dialectical behaviour therapy (DBT), exposure therapy, and supportive counselling (6,7).
Other treatment options include medication, such as antidepressants. This are sometimes used in the early stages of treatment, to help build a sense of stability and safety (2).
Recovery from complex PTSD is possible. Exploring support and self-help strategies can help people deal with emotional pain in a healthy way, and lead a full and meaningful life.
To connect with others who get it, visit our online Forums. They’re safe, anonymous and available 24/7.
If you, or someone you know, are concerned about suicide and need to talk to someone right now, call Lifeline on 13 11 14 or Suicide Call Back Service on 1300 659 467. If life is in danger and you need help immediately, please call triple zero (000).
1. World Health Organisation. International Classification of Diseases and Related Health Problems 11th Revision. World Health Organization; 2018.
2. Phoenix Australia. Complex PTSD. In: Australian guidelines for the prevention and treatment of acute stress disorder, posttraumatic stress disorder and complex PTSD. 2020.
4. Wolf EJ, Miller MW, Kilpatrick D, Resnick HS, Badour CL, Marx BP, et al. ICD–11 complex PTSD in US national and veteran samples: Prevalence and structural associations with PTSD. Clin Psychol Sci. 2015;3(2):215–29.
5. Cloitre M, Hyland P, Bisson JI, Brewin CR, Roberts NP, Karatzias T, et al. ICD‐11 posttraumatic stress disorder and complex posttraumatic stress disorder in the United States: A population‐based study. J Trauma Stress. 2019;32(6):833–42.
6. Karatzias T, Murphy P, Cloitre M, Bisson J, Roberts N, Shevlin M, et al. Psychological interventions for ICD-11 complex PTSD symptoms: systematic review and meta-analysis. Psychol Med. 2019;49(11):1761–75.
7. Bohus M, Kleindienst N, Hahn C, Müller-Engelmann M, Ludäscher P, Steil R, et al. Dialectical behavior therapy for posttraumatic stress disorder (DBT-PTSD) compared with cognitive processing therapy (CPT) in complex presentations of PTSD in women survivors of childhood abuse: a randomized clinical trial. JAMA psychiatry. 2020;77(12):1235–45.
SANE has been around for almost 40 years, providing support, services and connection to the million or so Australians affected by severe or complex mental ill health. With minimal government support, we deliver telephone and online counselling, guided recovery support and peer group forums that are accessible to any Australian when and where they need them.
This community that we represent face extraordinary amounts of stigma and discrimination on a day-to-day basis. Stigma impacts employment, housing and education opportunities. It causes exclusion and social isolation. It reinforces the culture of silence and shame that stops people seeking help when they need it. It contributes greatly to the reduced life expectancy for those living with complex mental ill health. Arguably, it is also stigma that is stopping governments from investing in better care and support services.
This is why we publicly and proactively call out stigma when it arises. We’re proud to say that SANE was one of the first organisations in the world to do this, and it was one of the main reasons that SANE was founded by highly respected journalist Anne Deveson and her friend and colleague, Marg Leggatt. Both had sons with mental ill health, and both felt compelled to change the status quo.
So it is somewhat ironic, and a little perplexing, that an Australian media personality recently used his public platform to suggest that SANE is engaged in ‘a broader type of mania sweeping the western world, offence-mania, where people devote fruitless and counter-productive hours to scouring the public discourse for anything which may cause distress.’
This opinion belittles the experiences of a large number of Australians and shows a worrying level of ignorance about mental health more broadly.
The way mental ill health and suicide is presented in the media strongly influences public stigma. This is not opinion, this is not new age ‘wokism’, this is a proven, scientific fact that has been strongly reinforced by global health experts.
The StigmaWatch program, where SANE identifies harmful media content then proactively reaches out to media professionals to suggest less stigmatising alternatives, has been shown to be highly effective.
The program is strongly valued by both the media professionals we engage with and the community that we represent. It is based in research evidence and delivered in partnership with Mindframe, an Everymind program.
But Stigmawatch is just one small part of what SANE does to improve the lives of those living with mental ill health.
We provide direct support to more than 60,000 Australians who contact us each year. We have a million visitors to our website seeking information and online resources. We represent the needs of this community to Government on a daily basis. This is an incredible feat for a national charity with less than 100 staff.
Since COVID, we’ve struggled to access the ongoing funding required to meet the growing demand for our services. Sadly, most of the people we support have no other support options available.
As state and federal mental health system reform processes trudge slowly on, we’ve had to rely heavily on charitable donations to fill the gaps and keep life-saving services like our telephone Helpline up and running.
To suggest that SANE is engaging in a bit of light ‘offence-mania’ because we have nothing better to do is offensive. To insinuate that we are not doing the job we’re meant to do is unconscionable.
We know that most of the Australian media are supportive and understanding. We see you.
But to those who don’t understand our mission, we offer you this. Meet with us. Ask us any question you like about what we’re doing to support those living with complex mental health needs. Have a coffee with one of our many Peer Ambassadors around the country and learn first-hand how the stigmatising words you throw around so flippantly can impact their daily life.
We look forward to hearing from you.
Access or learn more about SANE helpline and support serviceshere
“It can be a scary illness but it doesn’t make the people who have it scary people.”
Hannah aspires to finish her Master’s degree in mental health but a bigger goal is to live a happy and fulfilling life. She wants to tackle the stereotypes that currently exist around schizophrenia and smash the social stigma of a condition that affects 20 million people worldwide.
Diagnosed a decade ago, the 30 year old says she remembers hearing the word ‘schizophrenia’ for the first time. “I knew all the stereotypes surrounding it, like horror movies. I was thinking what does that mean? Am I dangerous? Does it mean they’re going to lock me away? I didn’t really know what it meant.”
Schizophrenia impacts a person’s thoughts, perceptions, emotions, and behaviour. It involves episodes psychosis that may include periods of false beliefs and hallucinations.
Rachel Green CEO of SANE, the national organisation representing Australians living with complex or severe mental ill health, says treatment and support for schizophrenia has come a long way but community awareness of how it can be managed hasn’t and stigma remains.
“Schizophrenia is not someone with a split personality, that is a myth. People living with schizophrenia are people like us, with hopes and dreams and ambitions for the future. Those living with schizophrenia may experience challenges but it’s not the barrier to a fulfilling life.”
Ms Green says it’s time to rethink generations of bias. “A person with schizophrenia doesn’t simply exist, they can be highly educated, creative and well accomplished individuals, removing the shadow and shame that is still attached to this mental illness is long overdue.”
Hannah says understanding psychosis, what it is and why it’s happening helps her manage, she admits flippant slang such as ‘psycho’ and ‘schizo’ has an impact but is hopeful that through shared stories others will gain greater understanding too.
“People just think if they’re unwell at one point that they can never get better from that, but they can. They’re human like everyone else and want the same things like everyone else does. It can be a scary illness but it doesn’t make the people who have it scary people.”
This Schizophrenia Awareness Week, Hannah is partnering with SANE to share her story and call for better understanding and recognition. Learn more about Hannah’s story here
As the national organisation representing Australians impacted by complex or significant mental ill health, SANE is heartened to see psychosocial support services maintained within the focus on health and equity in the recent Budget.
Amongst the renewal of existing psychosocial support funding, we’re pleased to announce that SANE’s digital health programs including our community forums and guided service have been funded to continue their essential support of people and families with complex mental health issues for the next financial year.
These services provide free and effective care for people waiting for access to traditional face-to-face care and fills a critical care gap for those who would otherwise be either completely unsupported or relying on public hospital emergency departments.
According to SANE CEO Rachel Green, this budget has taken steps to address critical upstream factors such as unemployment, housing and social connection whilst taking important steps to bolster primary care – recognising the critical role GPs play in providing long term mental health support.
“We’re cautiously optimistic to see recognition of the significant and growing impact of financial insecurity amongst the Australian community with initial increases in financial and housing support.
To quote the singer, Lizzo, it’s about damn time this critical factor was acknowledged, and we’re hoping to see further increases in subsequent years.
From a health perspective, SANE applauds the enhancements being made to the primary care system, in particular the tripling of the Medicare rebate for youth and concession card holders visiting their GP.
We know from speaking with our community that GPs are an essential source of mental health care, in fact, almost 50% of the people accessing SANE phone and online support services are entirely reliant on a GP for their mental health care.
Boosting access to affordable primary care, and improving community-based multidisciplinary care, will significantly impact both physical and mental health outcomes.
However, whilst this budget shows some promise, it also lacks detail on the broader mental health reform process and how this Government will work to build greater accessibility and equity into the system over the long term.
There are still many people who face extended waiting lists or others who have to choose between paying a gap fee for mental health care or paying their rent.
We have a lot of work to do and I hope that this Government continues to listen and engage with those people and families who use the mental health system every day.”
We are excited to share that SANE is the first organisation to receive government accreditation for digital mental health services!
Developed by the Australian Commission for Safety and Quality in Healthcare, the accreditation audit process conducted by the Institute for Healthy Communities Australia (IHCA) involved rigorous independent review of organisational programs, policies, program manuals, protocols and data security as well as independent feedback from participants using SANE services to verify alignment with the new National Safety and Quality for Digital Mental Health (NSQDMH) Standards.
Digital mental health refers to any mental health service accessed via phone, online, SMS, video conference or apps. The NSQDMH Standards are a formal benchmark outlining the level of care users should expect, therefore improving and standardising the quality of available digital mental health services and protecting those who use them from harm.
SANE CEO Rachel Green said: "This is a huge achievement, and demonstrates SANE’s commitment to safety and quality – speaking volumes to the strengths of being a lived experience-led organisation, strongly focused on partnering with the people and families who our services are co-designed to support, and demonstrates that our digital mental health programs meet the highest standards of safety and quality."
Australia is the first country in the world to offer government accreditation for digital mental health services. Whilst currently a voluntary process, it is planned for it to become mandatory for all Australian providers – public and private - by the end of 2024.
SANE is delighted to be the first organisation to undertake this process and, more importantly, the first to pass with flying colours.
According to the report provided by the NSQDMH independent evaluator, IHCA: ‘SANE presents as an outstanding organisation in terms of their visionary and robust leadership, governance and operational management; comprehensive documentation; high calibre of staff; focus on training and development; quality of services provided, and extensive evidence of engagement with people with lived experience in planning, developing and delivering services.’
Put simply, accreditation against the standards provides digital mental health users and GPs, clinicians, PHNs and other health providers assurance that SANE programs and services are gold standard for safety, efficacy and security.
Autism is a neurodevelopmental condition, with characteristics first emerging in early childhood.
Autistic people experience a range of differences in the areas of social behaviour and communication, interests and behaviours, and often experience co-occurring mental health conditions.
Autistic people can benefit from working with mental health professionals who understand autism, are strengths-based, and supportive.
An important note: at SANE, we have chosen to use identity-first language in this factsheet, which is preferred by many people in the autistic community1. However, we recognise that some people prefer person-first language like ‘person with autism’, or the term ‘autism spectrum disorder’, and we respect individual choices and preferences.
Autism is a neurodevelopmental condition. The official diagnostic term is ‘autism spectrum disorder’. Some people also use the term ‘Asperger’s syndrome’, which was a previous term related to autism, though this is no longer given as a diagnosis in Australia.
Autism is form of neurodivergence, meaning that autistic people think, learn, experience, and interact with the world around them in a different way to other people. These days, more people are understanding and embracing autism, and celebrating the strengths of autistic people.
As a neurodevelopmental condition, signs of autism first appear in early childhood. Autism involves the following2:
Challenges with social communication and interaction. This can include challenges with conversations, non-verbal communications and body language, and difficulties in relationships.
Restricted and repetitive behaviours, interests or activities. For example, repetitive motor movements or speech; a strong preference for sameness and routine; intense or focused interests; or sensitivity to sensory stimulation like sound or temperature.
It’s unclear what causes autism. There is no single cause, and lots of different factors can contribute. It’s known to run in families and there is a strong genetic basis3.
It’s estimated that around 0.7 per cent of Australians are autistic, and children and young people are most likely to be diagnosed4. People are getting better at recognising autism, particularly in adults who might have had their symptoms missed in childhood.
Autism occurs on a spectrum and can be described as a constellation of traits. This means that each autistic person is different. Some autistic people experience significant challenges in their day-to-day life, and may identify as having a disability, whereas others do not.
Many autistic people also experience co-occurring mental health issues. These are commonly due to a range of reasons, including overlap in symptoms, possible shared life experiences and genetic factors, and the impact of stressful or traumatic events like bullying.
Common co-occurring mental health and developmental conditions include5:
ADHD
Depression
Anxiety disorders
OCD
Bipolar disorder
Some autistic people may also experience other conditions like intellectual disability, speech and language challenges, sleep problems, and physical health problems.
Many autistic people can benefit from accessing mental health support. But there can be barriers to getting the right help – for example, some mental health professionals may not have a good understanding of autism, or have the right training to provide support.
Good mental health support for autistic people includes6:
Mental health professionals who are knowledgeable about autism, and understand the strength and resilience of autistic people.
Accessible, high quality support services that are appropriate for people who might have communication challenges or sensory sensitivities.
Good coordination and collaboration between different teams and support providers.
People experiencing both autism and mental health issues can also benefit from:
building a relationship with a supportive GP, and other mental health professionals
developing a support network of trusted friends or family members
looking after their physical health by getting enough exercise and sleep
connecting with others with similar experiences, such as through peer support
Accessing other types of support, such as community and employment support, if needed.
Autistic people have a range of strengths and have the right to access connection and mental health support that meets their needs.
To connect with others who get it, visit our online Forums. They’re safe, anonymous and available 24/7.
2. American Psychiatric Organization. Diagnostic and statistical manual of mental disorders (5th ed.; DSM-5). In: 5th ed. American Psychiatric Association; 2013.
3. Warrier V, Chee V, Smith P, Chakrabarti B, Baron-Cohen S. A comprehensive meta-analysis of common genetic variants in autism spectrum conditions. Mol Autism [Internet]. 2015;6(1):49. Available from: https://doi.org/10.1186/s13229-015-0041-0
5. Lai MC, Kassee C, Besney R, Bonato S, Hull L, Mandy W, et al. Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis. Lancet Psychiatry [Internet]. 2019;6(10):819–29. Available from: https://www.sciencedirect.com/science/article/pii/S2215036619302895
