Speak up for better treatment or management of a specific condition

Do you or a loved one live with a specific condition that could be better managed or better understood by health services or the general community? Would you like to advocate for better treatment options or more research funding?

There are many existing health consumer organisations advocating on behalf of consumers with a range of conditions. You may be interested in joining one of these groups.

Benefits of joining a health consumer organisation

Joining a consumer or community support organisation allows you to connect with others facing similar issues and helps you to keep up-to-date with the latest information regarding your condition. In particular you can contribute to increasing awareness and management of your condition through:

• Participating as a member in commenting on health policy and ‘submissions’ (a formal way of letting governments know about what affects consumers like yourself and what your organisation is advocating for)
• Volunteering to be a consumer representative for your organisation and taking up one or more opportunities to give the consumer perspective (particularly for your condition) within a health project or committee
• Linking into other opportunities to advocate for consumers like yourself that you will become aware of through your new health consumer network.

The website Our Health also provides a national directory of consumer and community support organisations. Our Health is run by the Consumers Health Forum of Australia.

There is no group supporting my particular condition

If you can’t find a group that supports your particular condition, you can do a few things:

• Join Health Consumers NSW (if you live in NSW) and volunteer as a consumer representative
• Consider finding others like yourself and start a consumer organisation that advocates for your condition.

If you have decided to start your own group, take a look at the resources we have provided to help you engage with others. Finding others who have been through this process (for other conditions) will also be an excellent sources of knowledge – one way of connecting with people with this experience is through joining Health Consumers NSW.

 

Next: Get involved at a system level for better consumer-centred care