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A
Statement of Issues affecting Australians with Type 1 Diabetes
The Type 1 Diabetes Opinion Leaders Group released A Statement of Issues
affecting Australians with Type 1 Diabetes, on
29 August 2008, stressing 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
full Media Release... (PDF, 140KB)
On
this page:
Download
your copy of the
Statement
Click
here to download your copy of the Statement
(PDF, 4 pages, 350KB)
Excerpt
from the Statement:
Ten
issues 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.
Click
here to Download
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 kate@d1.org.au
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
 All
Australian state and federal Departments of Health were invited in July
2009 to provide an update on their activities to address the issues
outlined in the Statement.
Summary
of responses were included in the poster presented at the 2009 World
Diabetes Congress in Montreal, Canada:
Consumers
drive collaboration with health professionals, industry and academia
to inform quality improvement through the development of a Statement
of Issues affecting Australians with Type 1 Diabetes
(PDF, 2.1MB)
Responses
received from each department or government, and the issues addressed
in their responses are as follows:
ACT
‘Diabetes Services Strategic Plan’ is improving services.
Full ACT response (PDF, 92KB)
Northern
Territory
1. Access to specialist medical advice
4. Hospital admissions
5. Long-term monitoring
6. Adolescence and young adulthood
8. Training teachers and schools
9. Peer learning
Full
NT response (PDF, 271KB)
South Australia
1. Access to specialist medical advice
2. Complexity of Type 1 Diabetes
5. Long-term monitoring
6. Adolescence and young adulthood
8. Training teachers and schools
Full
SA response (PDF, 167KB)
Tasmania
1. Access to specialist medical advice
6. Adolescence and young adulthood
8. Training teachers and schools
7. Access to best treatments and medical technologies
Full
Tasmania response (PDF, 146KB)
Western
Australia
2. Complexity of type 1 diabetes
6. Adolescence and young adulthood
Full
WA response (PDF, 94KB)
Victoria,
NSW, Queensland
No response as at 12 September 2009
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....."
Read
the full DOHA response... (PDF, 490KB)
Read
more responses...
How
to support this work
The
development of the Type 1 Diabetes Issues Statement was not
sponsored or funded in any way. All participants donated their time
and The Type 1 Diabetes Network's officers who facilitated the process
were unpaid volunteers.
Costs
associated with the process were kept to a minimum and essential items
such as teleconferencing fees and website hosting were supported by
donations from our members, predominantly people with
Type 1 Diabetes.
If
you are able to support The Type 1 Diabetes Network and this important
initiative, all gifts over $2 are tax-deductible, and
will extend what we are able to do to support this project.
News
& Updates
Updates
about this and other projects to improve Type 1 Diabetes in Australia
will be made through our monthly email newsletter, Yada Yada.
For
further information, or to make suggestions, please contact:
Kate
Gilbert
Founder & President
The Type 1 Diabetes Network Inc.
Email: kate@d1.org.au
Phone: 0402 515 825
Post: PO Box 1293, Kensington Vic 3031
Page
revised
November 4, 2009
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