Carers often feel that the service system is a maze, that professionals work against them, and that they have to battle for every tiny gain.
However, working in partnership and using advocacy to resolve issues can produce better outcomes for everyone involved. This approach can make it easier to organise the supports that you and the person you are caring for need, and to make sure that they work for you.
Carers should be respected as partners in care by professionals and service providers. As a carer you provide much of the day to day care needed by the person you care for, and have a unique and deep understanding of their needs. For this reason it is important that the professionals who support you acknowledge your expertise, and work in partnership with you to provide the best outcomes for both the person requiring care and for you as the carer.
Successful partnerships are based on:
The NSW Carers (Recognition) Act 2010 recognises the valuable knowledge and experience of carers and the need to consider the views and needs of carers. Find out more about the Act.
Carers often find themselves in a situation where they need to advocate for themselves or the person they are caring for. Advocacy can be defined as standing alongside an individual who is disadvantaged and speaking out on their behalf in a way that represents the best interests of that person. Self-advocacy is about standing up for yourself and representing your own needs.
Using the techniques listed below will help to ensure that your advocacy will be most effective.
Contact the Carer Line on 1800 242 636 for information, advice and support to help you to advocate on your own behalf or on behalf of the person you care for. Staff can also provide details of other organisations that may be able to assist you.
Approach the right person or organisation
Who you approach will depend on the particular issues you want to raise. It can sometimes be difficult to decide where to begin. If the first person or organisation you approach cannot help, ask them for advice about where to go next.
Know your rights
You have rights in relation to the services and supports provided for you and so does the person you care for. Some rights are protected by law and others are written in the service charters, guidelines and policies that direct how organisations operate. Ask for copies of any documents that might tell you what your rights are.
Learn about the situation
Try to understand the issues. If you find professional jargon confusing ask for things to be explained in language that you are comfortable with. Repeat things back in your own words so that you can be sure that you have understood.
Know what you want
Know what you want to achieve - perhaps for a new service to be made available to you or to change the way a service is delivered. Be clear and open about your ideal outcome, but also consider where you might accept compromise. Be prepared to give way on points that are not important.
Have a meeting plan
Make sure that you are given enough time to deal properly with your concerns. Write down a list of your questions and concerns and create a plan of what you want to talk about.
Good communicators are clear and honest about what they want but they also listen carefully and consider other perspectives. Things may be done a particular way for reasons that you hadn't considered. Try to sort out problems when you are feeling calm and avoid doing so when you are angry.
Negotiation is a two way process so you need to be prepared to collaborate with the other party. Being assertive, emphasising common ground, being constructive in resolving the issue and being well prepared can help make negotiating more effective.
Keep all the documents you need together and sorted so that you can easily find what you want. Make notes (including the name and position of the person you spoke to, date and a summary of what was said) of your meetings and conversations so that you have an accurate record of what happened. Always ask for important decisions and information to be confirmed in writing.
Once you have reached agreement on what will be done, negotiate a reasonable timetable. Be prepared to follow up if nothing happens. Don't accept excuses for lack of action.
Throughout your caring journey, you may experience times where you have not been given the appropriate level of service or support from service providers. Being able to respond by making effective complaints to service providers is an important skill to have, as it ensures that your needs are met, your choices respected and your rights upheld.
Complaints can help professionals and organisations make sure that their services are working for the people they help.
You may feel uncomfortable about making a fuss and worry that it will make things difficult with a service you depend on, and you may even feel that you will not be able to use the service any more. However it is important to know that legally a service cannot hold it against you if you complain.
Understand your rights
You have rights in relation to the services and supports provided for you and so does the person you care for. Some rights are protected by law and others are written down in the service charters, guidelines and policies that direct how organisations operate. Ask for copies of any documents that might tell you what your rights are.
Rights of service users usually include:
Know what you want
Know what you want to achieve - perhaps an apology, a change to the way a service is delivered, a different person to work with, a refund or compensation. Complaints that include suggestions about how things might be done better are more likely to be listened to and acted upon.
Good communicators are clear and honest about what they want but they also listen carefully and consider other perspectives. Things may be done a particular way for reasons that you hadn't considered. Try not to sort out problems when you are angry. It also helps to direct your anger at the issues rather than making a personal attack.
Talk to the people involved first
Many problems are the result of misunderstandings and can be easily sorted out by raising your concerns with the individual or service provider. Try to stick to the facts and provide examples and reasons why you were not happy with the service. Despite this being an informal discussion, it is vital that you are assertive and make it clear what the problem is and how you would like it resolved. It is also important to make a record of the conversation and when it happened. This is because, if you are unable to resolve the issue at this level, you will need to pursue this further.
If you do not believe your concern is being taken seriously, show that you are prepared to take it further. Ask to speak to a more senior staff member like a team leader or manager.
Making a formal complaint
All services should have a formal complaints procedure. There may be a particular person you need to talk to, a form you need to fill in or you may be asked to put your concerns in writing.
A formal complaint will usually include:
If you have tried complaining to a person or organisation and do not feel that you have received a suitable response there are a number of organisations who can help you to follow up your concerns.
For complaints about discrimination: Anti-Discrimination Board of NSW
For complaints involving individual health practitioners and health service providers: Health Care Complaints Commission
For legal information, referrals and in some cases, advice for people who have a legal problem in NSW: LawAccess NSW
For concerns about the treatment of psychiatric patients: Mental Health Review Tribunal
For goods and services or tenancy agreements: NSW Fair Trading
For complaints about NSW Government agencies and some non-government organisations: NSW Ombudsman
For concerns about privacy rights and protection of your personal information: Office of the Privacy Commissioner NSW
For concerns about the rights of people with disabilities under guardianship of the Public Guardian: Public Guardian
For complaints about Australian Government departments and agencies, including Centrelink: Commonwealth Ombudsman
For workplace discrimination and breaches of workplace law: Fair Work Ombudsman
For Australian Government funded aged care services related concerns and complaints: Aged Care Complaints Commissioner
For discrimination and human rights concerns: Australian Human Rights Commission
For concerns about aged care services (residential or community care) subsidised by the Australian government: Australian Aged Care Quality Agency
If you think your privacy has been breached: Office of the Australian Information Commissioner
If you have concerns about a medical professional you can contact their regulatory body: Australian Health Practitioner Regulation Agency (AHPRA)
Carers NSW acknowledges the Traditional Custodians of the land, Elders past and present and all Aboriginal people.