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A Statement of Issues affecting Australians with Type 1 Diabetes
On the 29th August 2008, The Type 1 Diabetes Opinion Leaders Group released a 'Statement of Issues' affecting Australians with Type 1 Diabetes
It stresses that more needs to be done to reduce the impact of the disease.
Ms Kate Gilbert, Founder and President of the Type 1 Diabetes Network, said the statement confirmed that there were a range of fundamental issues requiring urgent attention to improve health outcomes for Australians with Type 1 Diabetes.
Read the media release ...Media_Release_T1Network (PDF, 140KB)
On this page:
Download your copy of the Statement
Statement_of_Issues_affecting_Australians_with_Type_1_Diabetes (PDF, 4 pages, 350KB)
Excerpt from the Statement:
Ten issues that require urgent attention:
- Access to specialist medical advice is very limited, especially in rural and regional areas
- Complexity of Type 1 Diabetes is neither well understood nor managed
- Coping with long-term complications of Type 1 Diabetes is left to the individual with very limited support
- Hospital admissions, planned and emergency, for people with Type 1 Diabetes are managed poorly when a diabetes team is not involved
- System for the essential long-term monitoring of Type 1 Diabetes is inefficient and highly ineffective
- Adolescence and young adulthood is a critical stage with the worst outcomes
- Access to the best treatments and medical technologies is dependent on the ability to pay, not medical need
- Training teachers and schools about the basic needs of children with Type 1 Diabetes occurs haphazardly
- Peer learning opportunities for people with Type 1 Diabetes are essential but very limited and difficult to access
- Leadership and advocacy for Type 1 Diabetes needs to be strengthened urgently
The issues and proposed solutions are explored further in the Statement_of_Issues_affecting_Australians_with_Type_1_Diabetes
101 Solutions for Type 1 Diabetes
 Through the process to develop the Statement of Issues, many solutions were proposed. The key solutions are included within the Statement but all 101 solutions have been compiled into an additional document.
101 solutions for type 1 diabetes (PDF, 5 pages, 186KB)
Launch of the Statement The Statement of Issues Affecting Australians with Type 1 Diabetes was launched in a special session on the final day of the ADS-ADEA conference in Melbourne:
Friday 29th August, 2.30pm
- Senator Guy Barnett, Senator for Tasmania launched the Statement. Senator Barnett shared his experience of living with Type 1 Diabetes and his thoughts about how Type 1 Diabetes can get on the agenda of governments and those in positions to improve services and outcomes.
Other members of the Type 1 Diabetes Opinion Leaders Group spoke :
- A/Prof Maarten Kamp, Paediatric Endocrinologist and President, Australian Diabetes Society
- Kate Gilbert, Founder & President, The Type 1 Diabetes Network
- Anthony Lambert-Johnston, father, corporate executive and long-term Type 1 diabetic
What Next? A Network of Issue Champtions
If any of the issues and solutions push your buttons, and you would like to take the lead on helping us strategically pursue change and improvements, please contact Kate Gilbert on
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or 0402 515 825 to discuss.
We are forming a network of Issue Champions to push ahead on each issue. We look forward to hearing from you if you would like to contribute in this way.
Contributing Individuals & Organisations
The following organisations and individuals contributed to the development of the Statement of Issues affecting Australians with Type 1 Diabetes.
Organisations with nominated representatives:
- Australian Diabetes Educators Association - Nuala Harkin, Diabetes Educator, Children’s Hospital Westmead
- Australian Diabetes Society - A/Prof Maarten Kamp, President and Endocrinologist
- Australasian Paediatric Endocrine Group - Dr Maria Craig, President and Paediatric Endocrinologist
- Endocrine Society Of Australia - A/Prof Maarten Kamp
- Royal Australian and NZ College of Ophthalmologists - Dr Paul Beaumont, specialist advisor on diabetic retinopathy
- Dietitians Association of Australia - Kate Marsh, Dietitian & Diabetes Educator
- GP Registrars Association - Dr Naomi Harris, President
- Medicines Australia - Diana Terry, Manager Stakeholder Relations
- Medical Technology Asssociation of Australia - David Ross, Director, Healthcare Access
- The Diabetes Unit, Australian Health Policy Institute - Cecile Eigenmann, Research and Development Officer
- Munted Pancreas online community for parents - Shelley Campbell, Founder & Co-Manager
Representatives of other key groups and professions:
- General practice (GP) - Dr Michelle Leadston
- Endocrinology and medical research - A/Prof Alicia Jenkins, St Vincent's Hospital & the University of Melbourne
- Tertiary hospital diabetes centre - Coral Shankley, Nurse practitioner (diabetes), Concord Repatriation General Hospital, NSW
- Adolescent/Transition diabetes service - Jo Pennisi, Credentialled Diabetes Educator, Queensland Diabetes Centre at The Mater
- Private practicing endocrinology - Dr Stephen Thornley, Southern Endocrine Pty Ltd, Sydney
- Rural/regional diabetes services - Ann Robinson, Diabetes Educator, The Townsville Hospital, QLD
- Health psychology and Counselling - Dr Linda Beeney, Consulting Diabetes / Medical Psychologist - Helen Edwards, Founder and Director, Diabetes Counselling Online Inc.
People with Type 1 diabetes:
- Jane Reid, Cooranbong, NSW
- Anthony Lambert-Johnston, Melbourne
- Zoe Hamilton, Melbourne
- Ron Raab, Melbourne
- Cheryl Steele, Melbourne
- Steven Brett, Sydney
- Susan Greenbank, Brisbane
- Michael Leeds, Perth
- Terry Lee-Williams, Sydney
- Tony Bernauer, Sydney
- Valma Datson, Melbourne
Parents of children/adults with Type 1 diabetes
- Marilyn Harrington, Canberra
- Steven Brett, Sydney
- Veronique Froelich, Koonoomoo, Victoria
- Cheryl Steele, Melbourne
The statements in the Statement of Issues affecting Australians with Type 1 Diabetes have not been formally endorsed by the individuals and organisations listed above though we thank them for their invaluable contributions.
Key Documents
Type 1 Diabetes in Australia : A Review (PDF, 9 pgs, 233KB) A literature review of Type 1 diabetes in Australia which forms the background to the Issues Statement Proposal, including examination of:
- Rising incidence and variable prevalence
- Mortality
- Hospital admissions
- Complications and comorbidities
- Other clinical outcomes
- Mental health
- Health and medical services
- Clinical practice guidelines
- Policy initiatives
- Consumer involvement and representation
Proposal for a Type 1 Diabetes Issues Statement (PDF, 4 pgs, 183KB) Outline of the proposed process for developing an Issues Statement: The Challenge, The Recommendation, The Role of an Issues Statement and the proposed Consultation and Collaboration process.
Selection of Further Background Reading
National Service Improvement Framework for Diabetes, Australian Government Department of Health and Ageing, 2005
National System for Monitoring Diabetes in Australia, Australian Institute of Health and Welfare, 2006
National Diabetes Strategy 2000-2004, Australian Government Department of Health and Ageing, 2005
Evidence-based guidelines for the management of diabetes, Australian Government Department of Health and Ageing
National Needs Assessment for Children and Adolescents with Diabetes, Juvenile Diabetes Foundation of Australia, 1999 (not available online)
Correspondence with our Politicians
Letter seeking the Department of Health & Ageing's response to the key proposal to establish a Centre for Excellence was sent to:
Federal Minister for Health & Ageing
1 August 2008
Excerpt of letter:
... we write to advise you that the work of the Type 1 Diabetes Opinion Leaders Group has progressed well, and ten key issues have been identified. It has been a very constructive process with many solutions also developed alongside each issue
The first and central proposed solution is a Centre for Excellence in Type 1 Diabetes. We would like to invite the Department of Health and Ageing to comment on this proposal."
Read the full letter ...
Responses
From: Stan Piperolglou, Director, National Health Priority Initiatives Chronic Disease Branch , 27 August 2008
"The draft statement is comprehensive and outlines the issues that the Network wants to progress. I note that you are putting forward proposals which cover a variety of settings across the care continuum. It is pleasing to see that the Network has a focus on holistic care.
Following the endorsement of the statement by organisations in your network you may wish to contact me again to talk further about the issues and solutions you have outlined in the draft statement. I look forward to hearing from you." Read the full letter .... (PDF, 55KB)
Letters providing early advice of the contents of the Statement, and invitation to send a representative to the launch, were sent to:
Shadow Federal Minister for Health & Ageing, State government Ministers for Health, Federal & State Opposition Spokespersons, Parliamentary Diabetes Support Group and National Health & Hospitals Reform Committee 3 August 2008
Excerpt of letter:
"Further to our correspondence on 15 June 2008, we write to advise you that the work of the Type 1 Diabetes Opinion Leaders Group has progressed well. Ten key issues have been identified as requiring urgent attention to improve Type 1 Diabetes in Australia. It has been a very constructive process with many solutions also developed alongside each issue. The issues that have been identified are as follows .....
The Hon. Guy Barnett, Senator for Tasmania, who has Type 1 Diabetes himself, will launch the Statement.....We would like to invite you or a representative of your Department to attend the launch."
Read full letter ...
Letters introducing Type 1 Diabetes Opinion Leaders Group were sent to:
Federal Minister for Health & Ageing, State government Ministers for Health, Federal & State Opposition Spokespersons, Parliamentary Diabetes Support Group Chair, National Health & Hospitals Reform Committee 15 June 2008
Excerpt of letter:
"Eight health professional bodies, six non-government organisations and three voluntary consumer groups are represented on the newly-formed Type 1 Diabetes Opinion Leaders Group, alongside 14 people with Type 1 Diabetes and four parents of children with diabetes.
The Type 1 Diabetes Network, a consumer-led health promotion charity, has convened the group to develop A Statement of Issues affecting Australians with Type 1 Diabetes, and stimulate discussion about solutions."
Read the full letter ....
Responses
From: Craig Ritchie, Acting Assistant Secretary, Chronic Disease Branch, Department of Health and Ageing, 4 July 2008
"I am delighted to learn of the development of The Type 1 Diabetes Opinion Leaders Group and appreciate the positive contribution this group will make in improving outcomes for Australians of all ages who live with type 1 diabetes.
The Government is concerned at the increasing incidence ... and particularly the difficulties encountered by people with type 1 diabetes in managing the condition....."
DOHA_Response_0708 (PDF, 490KB)
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