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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.
Disclaimer
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.
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Opportunity To Let SA Government Know Of Our Needs
Tuesday 17 March 2020
From ME/CFS South Australia (via email):
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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.
Closing date for their survey: 5pm Friday 3 April 2020.
They want to hear about your stories and lived experience, both the positive and negative, to help improve our health and disability system.
At the bottom we provide some suggested areas that you may want to cover and some prompting questions they have prepared, that you may want to consider before sharing your story.
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.
- Adelaide: Wednesday 4th March at Journeylab, 200 Victoria Square, Adelaide, 9am - 7pm
- Adelaide: Thursday 5th March at Journeylab, 200 Victoria Square, Adelaide, 9am - 7pm
- Berri: Tuesday 3rd March at Berri Barmera Library, Kay Ave, Berri, 9am - 5pm.
- Mount Gambier: Thursday 12th March at Mount Gambier Library, 6 Watson Terrace, 9am - 5:30pm
• Listening sessions
Held at Journey Lab, Torrens Building, 220 Victoria Square, Adelaide
- Tuesday 10th March 2020 from 10.00am till 1.00pm
- Wednesday 11th March 2020 from 10.00am till 1.00pm
Register online, phone (08) 8226 3188, or email Health.HPCEngagement@sa.gov.au.
• Follow up forum
Wednesday 1 April at a central Adelaide location. A video link up will also be available.
The aim of this forum is to:
- Report on the key issues identified through the feedback received,
- Ensure that these issues reflect what you told us,
- Identify the key priorities for action.
The Minister for Health and Wellbeing, Hon. Stephen Wade MLC, will be joining the forum.
Location and times for this forum will be provided on their website, when available.
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.
Findings from this consultation, as well as proposed actions, will be reported to the Minister for Health and Wellbeing and published. A summary of the feedback received at each of the listening sessions and through the website will be available in late June 2020.
For general inquiries contact: email HealthHealthPerformanceCouncil@sa.gov.au or call (08) 8226 3188 during business hours (9am to 5pm, weekdays).
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What type of stories are they looking for?
Your experiences with the health system:
• What works well?
• What are the opportunities for improvement?
• What are health care professionals doing well and what lessons could they learn?
• What has been your experience using different types of health service – GPs, pharmacies, hospitals?
The health and disability systems:
• What are your experiences of continuity of care between health and disability services?
• Has this been affected by the introduction of the National Disability Insurance Scheme?
• What are the things that you, or people you know, would like to have access to?
Anything else?
"Don’t let us limit you – tell us anything you think we should know."
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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.
(Some of these are federal issues but it is important to let the state government know, so they can inform the federal agencies of the issues.)
Access to medical and other services
- inability to attend
- denial of services
- unable to afford care and/or required reports
- services and treatments not locally available
- lack of accommodations needed for my disability (e.g. POTS, MCS, noise)
- lack of knowledgeable health practitioners
Misdiagnosis leading to harm
- threat of removal of children on assumption that family are causing the disabling symptoms.
- unwarranted psychiatric diagnosis leading to incorrect management and treatment
Housing
- access to affordable housing
- access to safe accommodation
- inability to break the lease on housing that does not meet disability needs
Education
- access to distance education
- accommodations for impairments
Reasonable Accommodations under the Disability Discrimination Act
- not being recognised as having a disability
- experience of discrimination
- denial of human rights
Abuse
- experience of dismissive, humiliating or derogatory behaviour
- physical or emotional violence
Reliance on family, friends and carers
- mistreatment due to misunderstanding of ME/CFS
- lack of independence for both person with the disability and their carers.
DSP and Newstart
- access
- impact of poverty
- DSP requirement to undertake harmful treatments
NDIS:
- access
- developing plans
- managing services
Insurance:
- access to disability cover
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Registered Charity 3104
Email:
sacfs@sacfs.asn.au
Mailing address:
PO Box 322,
Modbury North,
South Australia 5092
Phone:
1300 128 339
Office Hours:
Monday - Friday,
10am - 4pm
(phone)