The Carer Advocacy Toolkit is an online digital resource, designed for mental health carers, families and friends of people living with a mental health condition.
The purpose of the Toolkit is to inform carers about what advocacy is, and to empower carers to get involved in advocacy – whether that be individual or systemic advocacy.
We want the Toolkit to be a resource that is accessible for people from all backgrounds and experiences, no matter how big or small your knowledge about advocacy is!
We’d like to thank the families and carers who participated in our co-review of the Advocacy Toolkit, who provided some fantastic feedback and suggestions about how we could make the Toolkit better for carers and families – so, a very big thank you to Jessica Bittar, Phil Coller, Marie Butler-Cole, Ann McLachlan, Leonie Mills, Eileen McDonald, Catalina Valencia, Andrew Love, and 2 anonymous carers.
You can find more information on what advocacy is, and who can be an advocate, below in the Toolkit!
Why did we develop the Carer Advocacy Toolkit?
The NSW Mental Health Commission funded MHCN and Being (the consumer peak body) for the development of a resource to support mental health carers and people with a lived experience of mental health conditions to have more influence in policy and advocacy in their local community.
This is to help implement the Lived Experience Framework (LEF) which aims to help service providers and organisations embed lived experience in their service delivery and design activities. The Framework was co-designed by the NSW Mental Health Commission and people with a lived experience of mental health issues and mental health carers. This in turn helped implement ‘Living Well, the Strategic Plan for Mental Health in NSW’.
The Lived Experience Framework asserts that services should recognise and value the lived experience of people living with mental health conditions and carers. They indicate that trauma- informed and person-centred approaches should utilise people’s strengths, and also recommend that organisations include lived experience in their accreditation and review processes.
The National Mental Health Standards also sets out that services should include carers and people with a lived experience of mental health conditions in service planning, delivery and evaluation processes. The common element through these plans is using the lived experience of carers and people with a lived experience of mental health conditions to inform reform. We hope that our Toolkit is helpful for carers who are just starting their advocacy journey, who are unsure of what advocacy is, or who are even seasoned advocates!
MHCN would like to thank the NSW Mental Health Commissioner Catherine Lourey, who launched the Carer Advocacy Toolkit at our Carer Advocates Showcase event for Carers Week and Mental Health Month in October 2020.
You can watch the online launch of the Advocacy Toolkit on our YouTube channel.
What is advocacy?
In its simplest form, advocacy means speaking on behalf of, or support of, someone or a group of people.
For mental health carers, this can mean supporting a loved one experiencing a mental health condition to speak up for themselves, or speaking up on behalf of yourself, to ensure that your voices are heard and that you are being treated fairly and respectfully.
For example, voicing your concerns if you feel you or your loved ones have been inappropriately treated or supported by local health services, or you might contact an organisation that provides individual advocacy to help support you and your loved one to have your voices heard. This is called individual advocacy.
- For more information about individual advocacy, you can watch a video on self-advocacy by Aged and Disability Advocates Australia (ADA) from people with a lived experience of mental health conditions perspective in animation form.
- You can also watch a video about self-advocacy by ADA here, from people with a lived experience of mental health conditions perspective by Geoff Rowe, CEO of Aged and Disability Advocacy Australia
MHCN are the peak body for mental health carers in NSW. That means that we work with and for mental health carers to advocate for bigger picture mental health and policy reform by informing and influencing organisations, agencies, government, etc. through writing submissions, policy briefs and consulting with stakeholders e.g., mental health carers and families, other carer organisations, etc. This is called systemic advocacy.
You can read more about our work with systemic advocacy in our ‘How We Advocate’ section on our website.
Why is mental health carer advocacy important?
The mental health system so often underestimates the incredible value of mental health carers, families and friends. MHCN often hear from carers that they were ignored and not listened to by mental health services or that they were even blamed for what is happening with their family member. The focus on individuals, on their symptoms, their needs, their wants, hopes and dreams is great – but, most individuals aren’t alone.
Relationships matter to mental health and we now have research evidence that shows that supportive relationships with family members are key to recovery from a mental health condition. Services that have a family focus are empathetic and listen to carers and family members and they view supportive families as partners. These services talk with people living with a mental health condition about what they want in their relationships with others and help them to achieve this. Who better to teach services about how they can have a family focus than families and carers?
Mental health conditions don’t just affect one person. Family members and carers often have it tough too. Sometimes mental health conditions might mean families dealing with some losses around what might have been if everyone were well or changing hopes, dreams and expectations for the future. Sometimes carers will give up work or career goals. Many family members are juggling these challenges with daily life, like young carers who are busy with growing up, attending school and learning about themselves or older carers or carers with a disability who might be dealing with health issues or accessibility challenges. Whatever the circumstance, family members should be supported too and we need to listen to what family members say that they need in order to build those supports for families.
What does the Policy and Advocacy Team (PAT) do at MHCN?
The policy and advocacy team (PAT) is responsible for identifying systemic problems experienced by mental health carers, developing ideas for solutions to these problems and then advocating for those solutions. To make change we want to change the minds of the people who make decisions.
So how does the policy team do this?
Well to start with it is very important that the policy team understands what is happening to mental health carers and family members in NSW. So, we monitor carers’ experiences of policy and services by reading literature and listening to feedback from carers, organisations and policy makers.
Once we have heard about the problems that carers are experiencing, we identify issues for advocacy. We are a small team and carers experience many different systemic issues. We don’t always have the ability to work on every carer issue that comes to our attention at once. We prioritise issues when we think that they have a large impact on carers in NSW and when there is the potential for MHCN to influence the decisions of the government on that issue.
Once we have decided what to focus on, we research the issues by consulting with carers and organisations. We ask specific questions about their experiences and about their ideas for solutions. We also read any publications on the issue that we can access. We use all this information to decide on our position on the issue which states what we think the solutions are for carers.
Then comes the task of changing people’s minds so that we can change policy. We want decision makers to decide that our ideas for change need to be funded. Decision makers include politicians and health officials. We build support for change by hosting events where decision makers and carers can meet, by building partnerships with other organisations on advocacy issues and by meeting with decision makers privately ourselves. Once a topic is on a decision maker’s agenda, we provide advice either through conversation, short email feedback, letters or longer submissions.
What are some examples of advocacy success?
- The Mental Health Review Tribunal and Carers
What’s the Mental Health Review Tribunal?
The Mental Health Review Tribunal (MHRT) is a court, but unlike your typical court, the Tribunal doesn’t have an official judge or a jury and it doesn’t decide on who is guilty.
When a doctor decides to provide involuntary mental health treatment in a hospital, this decision is regularly reviewed by the Mental Health Review Tribunal at a formal hearing. The Mental Health Review Tribunal also decides whether a person should receive involuntary treatment in the community. This is called a Community Treatment Order (CTO) and they are often used to make people take medication for their mental health condition at home. Instead of a judge, the Mental Health Review Tribunal has a lawyer, a psychiatrist and another qualified person like a social worker or nurse who makes decisions.
So the Tribunal is important to carers?
Yes! Whether or not a person receives involuntary treatment can make a huge difference. Sometimes it means that someone receives the support that they need which can be a huge relief for carers. But if it is given when it isn’t needed it could mean that the person loses choice and independence and this can be deeply upsetting for everyone, including family.
Carers often feel strongly about whether the person they care for needs involuntary treatment or not and want to have these views heard by the Tribunal. Carers might also want to be able to be present in a supportive capacity for their family member when they attend.
Carers know a lot about the person that they care for. This should be obvious – carers have often been close to the person for a very long time. Because of this, carers have insight into what the person needs, that is different to the insight of doctors, nurses or allied health professionals. It’s important that the Tribunal is able to take these insights into account when they make decisions.
What could be improved?
One of the most common complaints that we hear from carers who have had a person they care about in hospital was that no one told them about the Tribunal hearing. Or, we hear that they would have gone to the hearing if only they were given a little bit more warning than being told about it the day before or even a couple of hours before it happened.
According to the Mental Health Act, ‘Designated carers’ and ‘Principal care providers’ should be notified before the person they care for goes to a Tribunal Hearing. The hospital is responsible for notifying carers of Tribunal hearings but each hospital has different practices around how they notify carers. It’s clear that we need more consistency around how carers are notified about Tribunal hearings.
How did MHCN respond to this issue?
Last year MHCN held a Mental Health Review Tribunal event, where we invited the Ministry and Tribunal members to speak to carers about the Mental Health Review Tribunal. Carers were then invited to ask questions. The event provided an opportunity for carers to express some of their concerns and for the Ministry and Tribunal members to listen to carers. This event became the starting point for further discussion with the Ministry around how we could improve the way that mental health services communicate to carers about involuntary treatment and Mental Health Review Tribunal hearings.
What was the result?
We managed to negotiate funding for a co-design project where MHCN will work with carers to create resources for carers on the Mental Health Act and the Mental Health Tribunal. To start off this project we will be looking at how hospitals currently notify carers about Mental Health Tribunal Hearings. We will also be looking into what resources, if any, currently exist that provide information to carers on the Mental Health Act, involuntary treatment or the Mental Health Review Tribunal. We will use this information to design and publish new resources for carers. We hope that this process helps everyone, including mental health services, to better understand what carers need around notification for Tribunal hearings.
2. The Productivity Commission – A “warts and all” tale of advocacy.
The Productivity Commission Inquiry into Mental Health is a perfect example of an Inquiry that helped to bring about some change – but frustratingly not all the change that MHCN would have liked!
What is the Productivity Commission and why does it relate to mental health carers?
The Productivity Commission conducts research and advises the Federal Government on economic, social and environmental issues. As the name suggests, the Productivity Commission focuses on how these issues impact Australia’s productivity. In other words, it is very focused on dollars, costs and benefits. So, when the Productivity Commission was tasked with inquiring into mental health, it was told to focus on questions like; what are the costs of mental illness, what are the costs of mental health supports and how does spending money on mental health supports reduce the costs of mental illness?
How did MHCN respond?
MHCN ran a consultation workshop with carers who told us that mental health conditions and mental health caring comes with many costs. They told us that caring for family members living with a mental health condition saves the economy billions. They told us about research that showed that if the government paid services to provide the same care that family members provide to people with a mental health condition, it would cost billions of dollars. Yet carers don’t get paid; in fact carers gave up work and lost superannuation to provide that care.
MHCN and the carers at the consultation spoke about some of the solutions. We wanted:
- Carer supports like mental health carer respite to be refunded by the Commonwealth Government. We wanted funding specifically allocated to specialised supports for mental health carers rather than general carer services.
- The eligibility criteria for Centrelink payments for carers to be changed so that carers of people with psychosocial disability could access these payments more easily. In particular, we wanted the assessment tool to be changed so that they were suited to assessing mental health conditions. We also wanted more leniency for carers who wanted to participate in part time work or education, without losing their carer payments.
Based on our consultation and research we wrote a Submission to the Productivity Commission. The Commission asked us to attend a hearing in Sydney where we spoke about the value of services for carers. We then wrote a second submission to the Productivity Commission providing comments on their draft report. We then met with the Productivity Commission a second time to provide further feedback on the section on carers.
What were the results?
The Productivity Commission cited MHCN in the final report. The report made several important recommendations for carers including that:
- Separate carer and consumer national peaks should be funded by the Commonwealth government.
- Psychologists should be able to provide sessions to carers and family members through Medicare.
- The eligibility criteria for carer payments should be changed so that they are more accessible.
- States should be responsible for providing mental health carer services.
The report also recommended significant reform to governance structures that would build a more cohesive and coordinated mental health system.
Since the report was released, we have had some successes for carers, in particular carers and families can now access psychology sessions through Medicare. However, a national carer peak body has not been funded yet, nor have we seen substantial changes to the eligibility criteria for carer payments as we might like. We are hoping to see more of these reforms be implemented in the near future.
The National Government also delivered big spending for mental health in the 2021-2022 budget. However, we are yet to see the comprehensive reforms suggested by the Productivity Commission fully implemented by the Government.
What is the takeaway message?
Advocacy isn’t always easy or straight forward. Sometimes there are big bumps along the way, sometimes you don’t achieve exactly what you want or you have less impact than what you expect. But perseverance is really important. We believe that contributing in some small way to slow incremental change can eventually help to change outcomes for carers and for people with a mental illness.
You can read more about how we advocate for carers, what our policy and advocacy team do, and read our submissions in our ‘how we advocate’ section on our website.
What are the benefits to advocacy?
- It can help you or your loved one to have your voice heard.
- It can help others understand your point of view.
- It can help you to express your views more effectively.
- It can help you by giving you information, services, and resources for either yourself, or your loved one.
- It can help by protecting your or your loved one’s rights.
- It can help you feel more confident in caring for your loved one.
- It can help you or your loved one by being respected by organisations and its staff.
- It can help you or your loved one not be discriminated against.
- It can help you get involved in mental health policy reform, to try to make the system better, so that others don’t have negative experiences.
- It can help you connect with other people who want the same thing that you do.
- It can help others who are in similar situations to you.
- It can help people living with a mental health condition participate in the community.
- It can help influence outcomes not only personally but on a state and national level.
- It can help raise the profile of systemic issues.
- “Nothing about us, without us”.
You can find a list of organisations that can assist with advocacy at the bottom of this page.
What are some different ways that I can participate in advocacy?
There isn’t just one way or one medium to participate in advocacy – there are many ways that you can decide to participate!
- You can utilise social media to express your message.
How should you use social media?
- You could use Facebook, Instagram, or Twitter, for example.
- Make sure when you are posting on social media, your message is clear.
- Make sure you know who you want your audience to be.
- You don’t need to use jargon or long words to get your message across. Keep it simple.
- Using social media for advocacy can be little to no cost.
- Social media can also help spread your message faster and to more people.
- Consider your goals – what do you hope to achieve from using social media to advocate?
You can read more about using social media for digital advocacy on the Community Toolbox website.
Some tips for using social media safely:
- Be selective with friend requests. If you don’t know the person, don’t accept their request. It could be a fake account.
- Click links with caution. Social media accounts can sometimes be hacked. Look out for language or content that does not sound like something your friend would post.
- If you are discussing your loved one on social media, make sure you have their permission to talk about them and their experiences. Be mindful of what you put in the online world.
- Be careful about what you share. Don’t reveal sensitive personal information i.e.: home address, financial information, or your phone number. The more you post information like this, the easier it is to have your identity stolen.
- Become familiar with the privacy policies of the social media channels you use and customise your privacy settings to control who sees what. E.g., you can set your Facebook profile to private, so only your Facebook friends can see information about you, or you can set it so that no one can see any information about you, even your friends. For more information and instructions on how to do this, visit Lifewire’s guide on ‘how to make Facebook private’.
- Protect your computer by installing antivirus software to safeguard it. Also ensure that your browser, operating system, and software are kept up to date.
- Remember to log off when you’re done, especially if you aren’t using your own computer. (Information Technology Services, https://carleton.ca/its/2016/social-media-safety/)
2. Talking, e.g., speaking with staff or management
For carers and families, it can be hard to talk to your loved one’s treating team/support team sometimes, especially when you are concerned about a loved one’s treatment, or how they are treating you.
Some tips in communicating with staff or management are:
- Be honest and open with them.
- Communicate any concerns you have about your loved one’s care.
- Be polite and respectful – at the end of the day, they are people too.
- Follow up with them.
- Explain your role to them.
- Explain the practical side of what is going on.
- Keep records of what is happening with your loved one.
- Write down notes to talk to the treating team about, so you don’t forget.
- Ask them about other resources available to you.
- Ask them what your rights as a carer are.
3. In person e.g., visiting your local MPs office.
MPs are elected and paid to represent the views of their community, understand your perspective, and to represent your views in Parliament. You are one of their constituents, so your opinion should matter to them.
To identify your local MP, you can locate them through the Parliament of Australia website.
RACP have put together some tips for organising a meeting with your local MP, which you can read.
4. Writing e.g., writing a letter to your local MP.
The more people who write to their MPs on a certain issue, the more likely that the matter will be raised and that something will be done about it. Writing a letter is simple, yet it can be very effective in enabling change.
Some tips in writing a letter to your MP are:
- Use the correct title for the MP or Senator.
- Introduce yourself, your issue, and why you are writing to them. Make sure to write that you are a constituent (a voter), as MPs tend to care more about the people that they represent – and they are meant to represent you.
- Keep it brief – try to keep your letter as simple and straightforward as possible. Try to keep it logical and use paragraphs and dot points where appropriate.
- Use your own words – try to personalise the letter where appropriate. This demonstrates your passion about the issue and why it is personal to you.
- Be polite – it is all good and well to write why there is an issue but tell your MP what you want them to do about the issue. Also, ask for a reply to your letter.
- Include your contact details – make sure you include your name, address, number and email address, if you want a reply.
- Try to be patient – MP’s often receive a lot of letters, so you might experience a delay in receiving a response from them.
- Follow up – if it has been a month or two and you have not yet heard back from your MP, follow up by ringing the MP’s office. Explain to them that you wrote them a letter and ask when you are likely to receive a response. Be persistent, however be polite and respectful. MP’s are people too! Remember, they are meant to represent their electorate and your voice; this is why they were elected in the first place.
What are some tips to help me advocate?
- Know what you want – try to be clear about what you are wanting out of the situation or what the ideal outcomes would be.
- Be clear and succinct.
- Have a plan – if you fail to plan, you plan to fail.
- Keep records – write down all of your notes in a notepad and keep them in a safe place. Keep records of all correspondence you have sent and received.
- Be assertive – but remember to also be respectful. Be clear and honest about what you want but try to consider other perspectives. It is also a good idea to have these conversations when you are calm and in a good frame of mind, as opposed to if you are angry or frustrated.
- Research – know what your rights are as a carer, and what the rights of your loved one are. You can read more about carer rights in the ‘your rights as a carer’ on our website.
- Persevere and patience – it can be frustrating, but sometimes in advocacy, change can take time.
- Build good relationships.
- Ask lots of questions.
- Remember, you are not alone.
- Remember to take care of yourself – you can see a list of self-care tips below in our ‘self-care’ section.
- Speak to someone who is experienced in advocacy, whether that be someone you know or an organisation – they might have a lot of helpful information and advice for you.
- There are many ways to be an advocate or to participate in advocacy. Some require a lot of time, commitment and energy. Some do not require as much commitment. The important thing is to find a way of advocating that works for you and your situation. All advocacy efforts are valuable.
- Know how and where to complain – you can read more in the complaint’s mechanisms section below.
- You may find that you are speaking with people who have differences in opinion. That’s okay. Discuss the facts of the difference of opinion calmly and openly and when appropriate. Try to find common ground.
- Be persistent!
- Know what your boundaries are.
Who can be an advocate?
The great thing about advocacy is, anyone with a lived experience of caring, or experience of a mental health condition, can be an advocate!
But how do you know if you’re in the right headspace to advocate?
If you feel like you are in a good stable place in your caring role (or maybe even finished caring), then you are ready to advocate for individual or systemic change (if you want to, of course).
If you feel tired or if you feel overwhelmed with your responsibilities at home and towards your loved one, don’t be ashamed to choose yourself and prioritise your needs by taking a step back from advocacy. Advocacy can be a long and frustrating journey as change comes about slowly sometimes.
Only choose to advocate if you feel like you are ready and in the right head space. You can stop advocating if it becomes too much.
I don’t have any advocacy skills, so can I even advocate?
Definitely! That is part of the reason why we have made this Toolkit – to help you get started on your advocacy journey. The power of peoples lived experience, whether living with a mental health condition, or caring for someone with a mental health condition, is incredibly important in systemic and individual advocacy!
Some carers and families feel like their experiences of caring are not valid. But, they are! People with a lived experience of mental illness and their carers and families have unique insights through their own experiences and journeys which are instrumental in advocacy. People with lived experience are considered the experts into their own lives and what is happening with them, therefore it is important to utilise their experiences throughout systemic advocacy.
Embedding lived experience throughout advocacy is important because it is about connecting with people and their stories, which is a powerful driver of change. When we hear people’s stories, we engage, connect, and create meaning. It is important because people can empathise and say ‘that happened to me too’. It builds momentum for creating the change in the system that people want and need.
When carers draw upon their own experiences and journeys and utilise them in systemic advocacy, it can be a very valuable resource. Using your own experiences in systemic advocacy can help to better the system and ensure that other people who are experiencing a similar situation to you don’t have to go through the same challenges and hardships that you did.
You can watch Jenny’s story on being a carer, which was part of our Sharing the Caring Journey video series.
Where can I learn more about advocacy?
Lived Experience Australia (LEA) are the representative organisation for people with a lived experience of mental health conditions and families in mental health and have a range of information on developing your advocacy skills.
LEA have released a webinar that provides an overview of key advocacy tips for people with lived experience of mental health conditions and their families and carers, run by carer Christine Kaine. You can watch the webinar by clicking the link below.
They also created the Advocacy Skill Builder Webinar series on 5 key topics – looking after yourself, how to be heard, briefing and debriefing, keeping the enthusiasm going, and self-reflection/self-evaluation. You can watch the series by clicking the link below.
You can find a list of further advocacy resources to download at the bottom of this page.
Mental Health Carer Advocacy Network
MHCN’s Mental Health Carer Advocacy Network (MHCAN) is a purpose-driven and carer co-designed program, funded by the NSW Mental Health Commission.
This project has been developed with mental health carers to promote and embed the lived experience of mental health carers, families, kinship groups, and communities in NSW mental health service design, delivery, and review.
Our aim is to help mental health carers support themselves and their loved ones, connect them with one another and the sector, and promote the importance of engaging lived experience to government and non-government organisations.
For more information and to join, check out our ‘Mental Health Carer Advocacy Network’ section on our website.
Email the NDIS Minister – Every Australian Counts
The Government wants to introduce NDIS compulsory assessments, which will remove the individualised and personalised nature of the scheme – the core values of the NDIS.
But now you have the chance to convince NDIS Minister Linda Reynolds to put an immediate stop to these changes. If you want to join Every Australian Counts, and write a letter to NDIS Minister Linda Reynolds, you can do so online by clicking the link below.
Beyond Blue – Blue Voices
Beyond Blue’s Blue Voices are a diverse group of people who want to influence the development and innovation of mental health services, policies and programs. Members have been affected by anxiety, depression or suicide – personally or through supporting someone like a family member, friend, student or colleague.
Blue Voices is open to anyone who:
- lives in Australia
- is 16 years or older
- has been affected by anxiety, depression or suicide – personally or through supporting others
- wants to be notified of activities to have their say on the design and innovation of mental health programs, services and policy.
Young Carer Program – Carers NSW
The Carers NSW Young Carer Program was developed to make a positive difference to the lives of young carers and their families. They do things like provide emotional support, information and referrals, awareness workshops, opportunities and events, and more!
It is a good way for young carers to meet other young people who are also carers and have similar experiences as them.
Phone: (02) 9280 4744
You can read more about being a young carer on our website.
Little Dreamers Young Carer Advocacy Project
The Young Carer Advocacy Project by Little Dreamers is an Australia wide initiative designed to give young carers a platform to influence their community and create policy change across Australia.
They also have a wide range of volunteer opportunities for people, including a young carer group facilitator, online tutor and more.
Phone: 1800 717 515
MHCN Free Training for Mental Health Carers & Families
Our free training courses embody an appreciation for lived experience – all courses have been co-reviewed by mental health carers and are delivered by our carer peer facilitators.
Current training includes The Caring Journey, Navigating Carer Support Systems, Recovery Oriented Practice, Inclusive Care Planning, User’s Guide to the NSW Mental Health System, Purposeful Storytelling, Carers and Advocacy: Foundations, Healthy Boundaries.
You can check out our training and register for them in the ‘training and education’ section on our website.
Recovery Colleges provide free training and education workshops that promote healing, wellbeing and recovery. Their courses are co-written and co-facilitated by Recovery and Wellbeing Educators, with at least one educator being a person with a lived experience of mental illness. To be eligible to attend the courses, you must live in the catchment area, and is open to people living with mental health concerns and families and carers.
Courses differ for each college however some do offer ‘Systemic Advocacy’ as a course.
You can view the course guide for each College below.
- Southeast Sydney Recovery College
- Western Sydney Recovery College
- Southwestern Sydney Recovery College
Mental Health Coordinating Council (MHCC)
The MHCC develops flexible accredited training and professional development that responds to the evolving needs of the community mental health sector. Their training is informed by recovery oriented and trauma-informed practice principles and is delivered throughout NSW by highly experienced and dedicated trainers including those with a lived experience.
Connecting Up runs several training and education programs, including webinars, online workshops, masterclasses, and boot camps, some of which are free!
TAFE – Certificate IV Mental Health
The nationally accredited Certificate IV in Mental Health is your ideal entry into an industry that is experiencing huge demand due to increased awareness of mental health issues. Practice supporting people in a real work environment and gain the necessary skills and knowledge to make a difference.
This is fee free if you are eligible for job keeper.
Available at three campuses – Mount Druitt, Ballina, Ourimbah, or online.
Sometimes you just need to take care of yourself. If you don’t, it can be easy to become burnt out. Self-care can be as simple as making sure you are taking care of your basic needs, such as sleeping and eating well, or, it can mean whatever you want it to! Below are some helpful self-care tips and suggestions to help support you during your advocacy journey. You can also read more in our ‘looking after yourself’ section of our website.
The Family and Carer Mental Health Program runs across NSW and offers free psycho-educational workshops and training for carers and families. They offer information and support to better understand and cope with your loved one’s diagnosis. They also run support groups and social events, as well as helping with individual advocacy.
Learn more about the program and find the closest one to you.
We also run a number of free training sessions for mental health carers and families! Visit the ‘training and education’ section on our website.
The Carer Gateway also runs online carer coaching and online carer skills courses on dealing with stress, effective communication, and much more.
- Find out more about carer coaching.
- Find out more about carer skills courses.
SANE Australia have a lot of fact sheets and guides about different mental illnesses on their website, as well as other helpful fact sheets about facts and myths of mental illness, etc.
Try to do any physical activities that you enjoy e.g., go for a walk or a jog around your neighbourhood. Try to take a different route – you may even come across some interesting places you never knew about or find a new café. Or join a local sports team – you can meet some new friends and try something new. If not possible, try to walk around the house, or stand up and stretch every few hours, even if only for a few minutes each time.
You might like to purchase a gym membership and use a personal trainer, or if you can’t afford to, there are plenty of YouTube videos where you can follow along with a simple workout, including fun dance routines!
Try to reduce caffeine intake from coffee and alcohol later on in the day as it may impact your sleep quality. Take a warm bath, and listen to soothing calm music before bed. Establish a sleeping pattern. Try to get 7-9 hours of sleep each night and try to go to bed and wake at the same time each day.
Think about what the things that interest you are and try to do at least one each day. Do you like to paint? Photography? Writing? Reading a good book? Bird watching? Gardening? You might like to sign up to a local class where you learn something new, such as pottery, or learning karate, for example.
Try to maintain a healthy, balanced diet and eat at regular times every day. Eat at least 3 meals a day even if you do not feel like it or if you are busy. If you don’t have much time, maybe spend a few hours one day a week meal prepping, or purchase meal kits delivered straight to your house such as Hello Fresh. There are also a lot of frozen meal options in the supermarket.
Also, remember to stay hydrated by drinking plenty of water. It can be hard to remember to drink a healthy amount of water each day, but you can get a 2 or 3 litre water bottle which will help you keep track of how much water you’re drinking.
You are more than just a carer – you need to take care of yourself by looking after your health. This will also help you more effectively manage your caregiving responsibilities as well as others you may have. Go to your doctor if you are feeling unwell.
Finding time out from your caring role may be hard but try to make time to engage with friends and family. Reach out, stay in touch and talk to those who support and encourage you. You could also try to plan a monthly night out with your partner, friend or family member. You may like to spend time with people who are not involved in your caring role, too.
Reach out to a carer support groups in the community to talk to other carers with similar experiences.
SANE runs a free online forum for carers which is anonymous and moderated by mental health professionals.
You can also try to speak to a counsellor, or a psychologist. You can find a counsellor near you by visiting the Australian Counselling Association.
You can find a psychologist near you by visiting the Australian Psychological Society website.
Some counsellors have a sliding scale payment system depending on your income. Some psychologists bulk bill too.
Take some time out for yourself, even if it is just 10 minutes. Write down your goals and thoughts in a journal or diary. Revisit your journal every few weeks and mark down any progress you have made, and what your next steps are for achieving these.
Ask for help
There is no shame in needing to ask for help. We all need a hand sometimes – that is the reality of life! Do you have a friend or family member who can come over and help you cook, or lift heavy items? Or a neighbour who may be able to mow the grass?
Sometimes you just need a few days off from your caring role to take care of yourself and ensure that you aren’t getting burnt out. Unfortunately, there aren’t many places that offer respite for carers anymore.
If you are in need of emergency respite, visit the Carer Gateway or ring them on 1800 422 737.
We also run the Eunice Lonergan Carer Respite Grants program, which gives carers (if eligible) to go into the draw to win a $1000 travel voucher.
You can read more about the program in our ‘Eunice Lonergan Carer Respite Grants’ on our website.
Take time for yourself
It is easy to become overwhelmed, drained and exhausted in your caring role, especially if you aren’t taking care of your own mental health and wellbeing. Make sure you schedule some time for yourself each day that brings you joy, no matter how big or small.
It is important for you to know what your rights are as a mental health carer, especially when advocating for yourself or your loved one, or if you have issues with support and services you’re accessing.
You can read more about your rights in our ‘your rights as a carer’ section on our website.
If you are unhappy with the way you have been treated or the way your loved one has been treated, you have a right to make a complaint. There are a few avenues in which you can do this. The best first thing to do is to make a complaint directly to the service provider if you have a complaint against them or one of their workers. There are also other formal ways of putting forward a complaint depending on the setting:
Official Visitors Program
If your loved one is in hospital and they are not happy with how they have been treated, you can contact the Official Visitors Program (OVP). You can also contact the OVP if you are not happy with the way your loved one has been treated.
The Official Visitors can assist people with a lived experience of mental health conditions/carers and families to talk to hospital staff, advise people with a lived experience of mental health conditions/carers and families about rights and about any concerns you may have about their mental health treatment.
Phone: 1800 208 218
Hours: Monday – Friday, 9.00am – 5.00pm
Health Care Complaints Commission (HCCC)
The HCCC is an independent NSW Government agency which is responsible for dealing with complaints about health services provided in NSW. They investigate complaints about health practitioners, allied health services, public and private hospitals, and medical centres. Complaints must be done in writing.
Phone: 02 9219 7444
You can contact the Ombudsman if you have concerns about a NSW Government department or community service. You can complain to them about how a NSW Government Department or agency deals with you.
Phone: 1800 451 524
You can read more about making a complaint and complaints bodies in our ‘what are my rights as a carer’ section on our website.
Below is a list of advocacy resources that you can click on and download!
Telling Your Story Safely Fact Sheet
This fact sheet has been designed by MHCN with 6 key tips about how you can share your story and experiences of caring in a safe way.
This checklist has been designed by MHCN with a checklist of items to help people figure out if a project they are involved in, or want to get involved in, is actually co-designed.
The co-design toolbox has been designed by MHCN. It is a helpful resource with information on purposeful storytelling, and useful ‘tools’ needed for co-design, including asking the right questions, active listening, addressing power imbalance, and much more.
Advocacy and the Organisation
This is a booklet developed by Lived Experience Australia, with help and tips on being an effective advocate.
Being an Effective Mental Health Advocate
This is a booklet developed by Lived Experience Australia, with help and tips on being an effective advocate.
Briefing and Debriefing
This is a booklet developed by Lived Experience Australia, with help and tips on being an effective advocate.
Recovery Oriented Language Guide
This is a booklet from MHCC about communicating effectively using recovery-oriented language.
What is Advocacy?
This is a booklet developed by People with Disability Australia about what advocacy means and how to get involved.
What is Advocacy? (Easy Read)
An easy read version of the above booklet.
Speaking Up for Social Change
This is a booklet developed by People with Disability Australia about how to advocate for social change.
Speaking Up for Social Change (Easy Read)
An easy read version of the above booklet.
Speaking Up for Yourself
This is a booklet developed by People with Disability Australia about how to advocate for yourself.
Speaking Up for Yourself (Easy Read)
An easy read version of the above booklet.
Lived Experience Australia (LEA)
Lived Experience Australia is the representative organisation for people with a lived experience of mental health conditions and mental health carers.
Self-Advocacy Sydney is an organisation run by and for people with intellectual disability. They are a disability service provider that provides support to people with intellectual disability to become their own self advocates. This service is free of charge.
They can help if you:
- Need help with information and advice
- Cannot get a service you need
- You are unhappy with a service
- Need help speaking to a government department
- Need to make a complaint
- Are experiencing abuse and/or discrimination
Individual Advocacy supports all persons with disability who live in:
- Baulkham Hills
- Ku-ring Gai
Phone: 02 9622 3005
Justice Action (JA)
Justice Action represents people locked in Australian prisons and hospitals, defending human rights in the hardest places. In addition to its work in defending human rights, JA gives voice to the marginalised and excluded. JA believes that a positive change in Australia’s criminal justice and mental health systems requires these voices to be respected and embraced as part of the solution.
JA aims to improve the social and mental health of prisoners and involuntary patients by providing prisoner, mental health and court support. It also engages in policy development, initiates campaigns and liaises with stakeholders.
Phone: 02 9283 0123
Multicultural Disability Advocacy Association
The Multicultural Disability Advocacy Association of NSW (MDAA) is the peak body for all people in NSW with disability and their families and carers, with a particular focus on those from a culturally and linguistically diverse (CALD)/non-English Speaking (NES) background with disability. They do individual advocacy and can help with NDIS appeals and reviews.
There is no age limit and you do not need to be receiving the disability support pension.
Their head office is in Granville. They also have offices in the city and inner west, south west Sydney, Bega, Griffith, Newcastle and Wollongong.
Phone: 1800 629 072
People with Disability Australia
PWDA’s individual and group advocacy services are provided by advocates who stand up for the rights of a person with disability and helps sort out their complaint, issue or problem. Their advocates take direction from the person with disability, keeps their issues and information private and confidential and only releases information with permission from the person. Advocacy support can include going to meetings with or for the person, writing letters, making phone calls or assisting them to lodge complaints. PWDA’s individual and group advocacy advocates work tirelessly to resolve issues and improve the quality of life for people with disability.
Their individual and group advocacy services are:
- short to medium term,
- to people with disability who have serious and urgent issues and
- also provides information to people with disabilities about how to advocate for themselves.
Priority is given to people with disability experiencing abuse and neglect, discrimination, homelessness, or those who lack appropriate services and supports.
Specific consideration is given to groups of people experiencing increased disadvantage:
- women with disability
- children with disability
- people with multiple disabilities
- people with disability who are Aboriginal and Torres Strait Islanders
- people with disability living in segregated settings (boarding houses, institutions, prisons and detention centres)
- people with disabilities living in regional or remote areas.
PWDA’s Individual and Group Advocacy Services provide support to people with disability:
living anywhere in NSW with advocates based in central Sydney;
living in three regions of NSW with locally based advocates in Queanbeyan, Sutherland and the Southern Tablelands and Southern Highlands.
Phone: 1800 843 929 (toll free)
Disability Advocacy NSW
Disability Advocacy NSW can provide short to medium term, non-legal, issue-based advocacy support to people with disability or living with a mental illness, who have serious and urgent issues. Anyone can make a referral to their service, including people living with disability, a family member, carer or a service provider.
Individual advocates who are professionally trained can help a person with a disability or their carer in the following ways:
- Directly advocating on behalf of a person or providing information and advice so that a person can advocate for themselves (e.g., dealing with a landlord, support when going to court, support in dealing with the police or dealing with a legal issue by getting professional legal advice, negotiating a better deal from a government department, dealing with guardianship and financial management orders, dealing with problems at work, school, TAFE or university etc).
- Linking a person with other relevant services (e.g., helping a person get legal advice from a solicitor).
- Talking over a problem (e.g., advocate can best help by simply listening and helping to think through options for moving forward).
- Supporting an individual to take formal action on matters related to disability discrimination or making a complaint against a service provider (e.g., assisting a person to make a complaint with the Anti-Discrimination Board).
- They can also assist people with a disability and their families navigate the NDIS through general advocacy, internal NDIS appeals, and external NDIS appeals.
They are located in Newcastle, Tamworth, Taree/Forster, Coffs Harbour, Armidale, Port Macquarie, Sydney West, Bathurst, Dubbo, and Broken Hill.
You can view a map of NSW to see if you are included in one of these areas.
Phone: 1300 365 085
Illawarra Advocacy’s mission is to recognise, support and defend the rights, dignity, choice and individuality of people with disability.
Illawarra Advocacy is an independent, local community organisation that is funded by the Federal Dept. of Social Services to provide free independent advocacy to people with disability residing in the Illawarra.
Owing to the size of the organisation, Illawarra Advocacy is unfortunately not able to provide advocacy to all people. As such, Illawarra Advocacy has to prioritise the issues that it undertakes. If in the circumstance that the organisation is unable to speedily provide a client with advocacy, they will endeavour to assist by referring on to other specific organisations or place the client on a waiting list.
They are able to provide:
- Direct advocacy; speaking, acting and representing the interests of their clients for specific issues.
- Support to individuals to enable them to advocate for themselves.
- Issue-specific advice.
- Referrals to other organisations.
Phone: (02) 4229 4999
Mental Health Advocacy Service
The Mental Health Advocacy Service (MHAS) is a state-wide run specialist service of Legal Aid NSW. They provide free legal information, advice and assistance about mental health law.
They help people who have been admitted involuntarily to hospital, people appearing before the Guardianship Division of NCAT, and families, carers and friends are welcome to ring them for advice concerning a loved one if they are experiencing any of the above.
Phone: 02 9745 4277
Official Visitors (OV)
The Official Visitors Program is a program that helps to assist you to talk to hospital staff, advise you about your rights, and any concerns you have about your mental health treatment. You can contact them if you are admitted to hospital under the Mental Health Act, or if you are a family member/carer of someone who is in hospital under the Mental Health Act.
Official Visitors are people with experience in mental health treatment and care. They are independent from NSW Health.
Phone: 1800 208 218
Family and Carer Mental Health Program
This is a program for families and mental health carers run by a range of community organisations across NSW. They have a team of carer advocates which you can speak to for individual advocacy. Their program also includes social events for carers, support groups, and free education and training workshops.
You can read more about the Program and find out what organisation runs the Program closest to you on the NSW Health website.
NSW Council of Social Service (NCOSS)
The NSW Council of Social Service (NCOSS) works with and for people experiencing poverty and disadvantage, and those organisations that support them, to achieve positive change in NSW. They believe that all people, communities and the community services sector should be supported and empowered to prosper in this state.
General Support Services
You can check out a list of general support services by using our ‘Carer Service Directory’.