The NSW Mental Health Commission funded MHCN and Being for the development of support for carers and consumers to have more influence in policy and advocacy in their local community.
This is to help implement the Lived Experience Framework. The Lived Experience Framework aims to help service providers and organisations embed lived experience in their service delivery and design activities. The framework was co-design by the NSW Mental Health Commission and people with a lived experience of mental health issues and caring. You can download framework below.
This in turn helped implement ‘Living Well, the Strategic Plan for Mental Health in NSW’. You can download the plan below.
The Lived Experience Framework indicates that services should recognise and value the lived experience of consumers and carers. They indicate that trauma- informed and person-centred approaches should attempt to leverage people’s strengths. They also recommend that organisations include lived experience in their accreditation and review processes.
The National Mental Health Standards also set out that services should include carers and consumers in service planning, delivery and evaluation processes. You can download the National Mental Health Standards and the carer and consumer participation standards below.
The common element is using the lived experience of carers to inform reform. We hope this resource is helpful for carers who are just starting their advocacy journey, who are unsure of advocacy or who are seasoned advocates.
MHCN Advocacy Resources
What is Advocacy?
For MHCN, advocacy is standing by carers so that they are empowered and supported throughout their caring journey. For carers advocacy may mean voicing your concerns if you feel you or your loved have been inappropriately treated or supported by local health services.
There are 3 types of advocacy:
Systemic Advocacy: Systemic advocacy involves advocating for bigger picture policy changes through mechanisms like submissions, policy briefs and consulting with stakeholders.
Individual Advocacy: Individual advocacy is one on one support to an individual to help address issues of concern and to have their voice heard. You might be a carer, family member or friend, helping to advocate for your loved one by speaking up on behalf of them/with them e.g. if you feel that they are not being treated fairly in hospital, or you might ask an organisation who provides individual advocacy to help support your loved one have their voice heard.
Classic Advocacy: This involves grassroots campaigning, petitioning and building community pressure on key decisionmakers to change policies on a local or national scale.
Who can be a carer advocate?
Anyone with a lived experience of caring can be a carer advocate. If you feel ready to be in a space where you want to advocate for systemic change, you are ready to start participating in advocacy work. Be kind and honest with yourself. 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. Advocacy can be a long and frustrating journey as change comes about slowly.
I am not sure of what skills I can offer – all I have is my caring experience. Can I still help?
Of course you can. The power of lived experience is important in systemic and individual advocacy.
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.
Often there are carers and families caring for a loved one with a mental illness, however they do not know that they are what you would consider a ‘carer’ or identify with the term. Many families and carers also feel like their experiences of caring are not valid. Carers can often feel like it is their duty to care for their loved one, because for many ‘it is just what you do when you are family.’
I am feeling exhausted. How can I take a break?
Advocacy can be a long process and a lack of initial success can lead to people becoming frustrated about the process, and also lead to burn out.
The below are some helpful things to take care of your own mental health and wellbeing.
Psycho-education: The Family and Carer Mental Health Program runs across NSW and offers free psycho-educational workshops and training for carers. They offer information and support to better understand and cope with your loved ones diagnosis. They also run support groups and social events, as well as helping with individual advocacy (see resources section).
Exercise: Try to do any physical activities you enjoy e.g. a walk or a jog, or join a local sports team. 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.
Sleep: 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.
Hobbies: Think about what the things that interest you are, and try to do at least one each day. Do you like to paint? Taking photos? Writing? Reading a good book? Bird watching?
Food: Try to maintain a healthy, balanced diet and eat at regular times every day (SANE 2015). Eat at least 3 meals a day even if you do not feel like it or if you are busy. Remember to stay hydrated.
Physical health: 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.
Connectedness: 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.
Support: Reach out to a carer support groups in the community to talk to other carers with similar experiences. SANE run an online forum for carers (see resources section).
Self-reflection: Take some time out for yourself, even if it is just 10 minutes. Write down your goals and thoughts in a journal or diary (SANE 2015).
What are the current opportunities for carer advocates to participate in systems change?
You can join our Peak Advisory Committee (PAC):
The Peak Advisory Committee helps MHCN to better understand the views and experiences of mental health carers and family members by consulting them when we write a submission or letter or are asked to provide feedback on draft legislation or policies.
Our Peak Advisory Committee includes:
- Carers and family members of someone living with mental illness.
- People with lived experience of mental illness who have an interest in carer issues.
- Professionals/organisational representatives who engage with mental health carers and family members.
- How do I join? You can join by filling in our short expression of interest form here: https://www.surveymonkey.com/r/GBWLKPQ
You can support the Caring Fairly campaign:
They are a grassroots campaign advocating for better support and rights for unpaid carers. Check out their website for readymade templates for MP letters and some social media tips! http://www.caringfairly.org.au/
Carers NSW Carer Representatives Program
Carers NSW are always seeking carer representatives for their program. Carers NSW will train you and then present opportunities to speak up for carers to help improve the system for carers and the people that they care for.
Their carer representative training includes topics such as effective communication skills, dealing with the media, and facts about carers. The training is free for carers and they will provide you with resources.
This is an unpaid role however Carers NSW reimburse you for travel and accommodation costs.
If you are interested in becoming a Carer Representative, you can contact Carers NSW using the below contact details.
Want to stay updated with the work we do at MHCN?
Subscribe to our weekly newsletter where we will keep you updated on upcoming advocacy opportunities across NSW. Scroll to the bottom of our homepage https://www.mentalhealthcarersnsw.org/ to sign up or you can email MHCNadmin@mentalhealthcarersnsw.org to sign up.
Carer Gateway: a website providing practical support and advice for families and carers. They also run a Helpline to connect you with supports, services and counselling to help support you in your caring role.
Mon – Fri, 8.00am – 6.00pm,
P: 1800 422 737
SANE Carer Forums: a safe and anonymous online forum, moderated by mental health professionals, for carers and families. You can connect with other carers who may be experiencing similar to you.
Young Carers: a website that provides information and resources for young carers (up to 25 years old) of someone with mental health issues, substance misuse issues, illness or disability.
Family and Carer Mental Health Program: a program across NSW that offers support groups, social events, educational sessions and individual advocacy for families and carers.
Griefline: Griefline are a free phone counselling program that provide support to anyone experiencing grief and loss in relation to relationships, mental health concerns, carer support, isolation or loneliness, and more.
They operate 7 days a week, 365 days per year, 12 midday – 3.00AM
P: 1300 845 745
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.
Official Visitors Program
If your loved one is in hospital and they are not happy with how they have been treated, or you are not, you can contact the Official Visitors Program. See above for their contact details.
Health Care Complaints Commission
NSW Health Care Complaints Commission: this is an independent NSW Government agency which is responsible for dealing with complaints about health services provided in NSW. They investigatecomplaints about health practitioners, allied health services, public and private hospitals, and medical centres. Complaints must be done in writing.
P: 02 9219 7444
You can contact them 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.
P: 1800 451 524
Where can I go to get support with individual advocacy?
If someone is in hospital
Family and Carer Mental Health Program
This is a Program for 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 here, and find out what organisation runs the Program closest to you.
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.
P: 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.
If someone is coming before the Mental Health Review Tribunal:
Family and Carer Mental Health Program – see above
Mental Health Advocacy Service – see above
For Other Matters:
Multicultural Disability Advocacy Association
The Multicultural Disability Advocacy Association is the peak body for all people in NSW with disability and their families and carers.
They offer both individual and systemic advocacy.
National Disability Advocacy Program
The National Disability Advocacy Program (NDAP) provides people with disability with access to disability advocacy that promotes, protects and ensures their full and equal enjoyment of all human rights enabling community participation (DSS).
You can read more about the different advocacy programs across NSW and the rest of Australia below.
Social workers work with individuals, families, groups and communities in the context of their physical, social and cultural environments, past and current experiences, and cultural and belief systems.
They try to assist and improve human wellbeing, and identify and address any issues that may impact on the person’s wellbeing or create inequality, injustice and discrimination.
They may undertake roles in casework, counselling, advocacy, community development and engagement, and social action to address issues (AASW).
To search for a social worker, you can use the AAWS directory here: https://www.aasw.asn.au/find-a-social-worker/search/