ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Opportunity To Let SA Government Know Of Our Needs
Tuesday 17 March 2020
From ME/CFS South Australia (via email):
Opportunity to let SA government know of our needs
Here is your opportunity to let the SA government know what issues people with ME/CFS, their family, carers or health care providers have, in engaging with the health system.
Opportunities to be involved face to face start 3rd March.
They want to hear about your stories and lived experience, both the positive and negative, to help improve our health and disability system.
There are several ways to provide feedback:
1. Complete the online submission form (survey)
2. Attend one of their events:
• Drop in sessions. No bookings required.
• Listening sessions
Register online, phone (08) 8226 3188, or email Health.HPCEngagement@sa.gov.au.
The Minister for Health and Wellbeing, Hon. Stephen Wade MLC, will be joining the forum.
To access these options or for more information go to https://yoursay.sa.gov.au/decisions/yoursay-engagements-people-with-disability-health-system-experiences/about
3. If you are not able to attend any sessions and would prefer to talk to them, they will organise a time for a telephone interview with you. Send them an email at Health.HPCengagement@sa.gov.au or call (08) 8226 3188 for more information.
Please note: Contributions will be treated in strict confidence. However, confidential submissions may still be subject to Freedom of Information laws.
For general inquiries contact: email HealthHealthPerformanceCouncil@sa.gov.au or call (08) 8226 3188 during business hours (9am to 5pm, weekdays).
What type of stories are they looking for?
The health and disability systems:
"Don’t let us limit you – tell us anything you think we should know."
Here are some topics we might want them to know more about in relation to ME/CFS, in particular, how the symptoms of ME/CFS create challenges that are overlooked.
Access to medical and other services
Misdiagnosis leading to harm
Reasonable Accommodations under the Disability Discrimination Act
Reliance on family, friends and carers
DSP and Newstart
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