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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.
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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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The Feds respond to Queensland’s lobbying
Saturday 7 June 2008
Here’s a response from the Federal Department of Health and Ageing to lobbying by Queensland president Lyn Wilson [see 22 May news article about Lyn lobbying the Prime Minister]. Note that it draws our attention to a national consulation process on a new health system called Health Talks.
Check it out and have your say.
Australian Government
Department of Health and Ageing
Ms Lyn Wilson
President of the ME/CFS/FM Support Association Qld Inc
[address supplied]
TOOWOOMBA QLD 4350
Dear Ms Wilson
Thank you for your letters of late April and early May to the Minister for Health and Ageing, the Hon Nicola Roxon MP and to the Parliamentary Secretary to the Minster for Health and Ageing, Senator Jan McLucas, concerning Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/CFS/FM). Your letter to the Minster for Small Business, Independent Contractors and the Service Economy, the Hon Dr Craig Emerson, has also been referred. The Minister has asked me to reply on her behalf.
The Government is aware of the suffering caused by this disease and appreciates that many people with ME/CFS/FM and their carers have needs of the health system which are not currently being met. Since coming to office the Government has received a number of requests for increased Government action and funding of special programs for diseases including ME/CFS. I note the points you raise in your letter seeking support from the Government. Unfortunately it is not possible to fulfill all of these requests at this time.
The Government understands that many people with chronic diseases currently fall through the gaps in our health system and is undertaking serious measures to develop a long-term health reform plan for a modern Australia.
As a first step the Government has established a National Health and Hospitals Reform Commission ('the COmmission'). The Commission's first report to Government was delivered on 30 April 2008. The report 'Beyond the Blame Game: Accountability and performance benchmarks for the next Australian Health Care Agreements' identifies twelve health challenges and proposes a framework for the next Australian Health Care Agreements and robust and relevant performance indicators and benchmarks.
One challenge identified within the report is ensuring the provision of enough, well-trained health professionals and the promotion of research. The Commission shares your view that linking innovative clinical research to new models of service delivery is acknowledged as a crucial element of a vibrant and evolving Australian health care system.
The Commission will consult widely with the Australian community over the coming months before providing a final report to Government. The Commission wants to collect ideas, innovations and suggestions to make the Australian health system better and these can be sent to talkhealth@nhhrc.org.au.
The Government, through the National Health and Medical Research Council (NHMRC), provided $1.7 million between 2000 and 2007 in funding seven research grants involving Chronic Fatigue Syndrome, Myalgic Encephalomyelitis and Acute Q Fever. In addition, the NHMRC is currently funding research involving ME/CFS worth a total of 537,500 over five years, which is being undertaken at the University of New South Wales.
The NHMRC also administers a program for Centres of Clinical Research Excellence (CCRE). The aim of the CCRE is to support clinical (human) research with potential to lead to improved health outcomes for the community and to ensure the effective translation of research outcomes into clinical practice and clinical training. In 2007, a total $12 million was awarded to six CCRE grants.
In your letter you sought agreement for the nationwide adoption of Canadian Consensus Clinical Guidelines. Neither the Department of Health and Ageing nor National Health and Medical Research Council (NHMRC) is in a position to mandate these guidelines for use in Australia. If you aim to pursue the idea of developing or adapting a guideline for use in Australia, the NHMRC has a program that provides support to organisations that choose to follow this path. The Guideline Assessment Register was established to provide support to external guideline developers, especially around the evaluation and documentation of scientific evidence and the development of evidence-based recommendations based on the available information. This is consultancy based support and does not include the actual developmental work, which is the responsibility of the organisation concerned.
If you would like more information about the Guideline Assessment Register please contact Mrs. Vesna Cvjeticanin, Director, Evidence Translation Section, on phone 03 6217 9370 or email vesna.cvjeticanin@nhmrc.gov.au. Information can be also be found on the NHMRC website at http://nhmrc.gov.au/publications/categories/information.htm.
I hope this information is of assistance to you.
Yours sincerely
[signature supplied]
Jennie Roe
Assistant Secretary
Chronic Disease and Palliative Care Branch
22 May 2008
Here is a scan of the letter:
Click on image to enlarge:
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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)