The
Type 1 Diabetes Network's volunteers endeavour to bring the voice of
people living with Type 1 diabetes to bear on health policy in Australia.
On
this page, you will find some of the correspondence we have written,
and responses received, in recent times:
Issue:
Managing Risk in Primary Care
To:
Australian
Commission on Safety & Quality in Health Care
14 October 2008
"
We have been advised by the Chronic Illness Alliance that you are
interested in exploring the complexities of managing risk in primary
care as it relates to chronic medical conditions, and the Type 1 Diabetes
Network would like to provide you with some information relating
to the example of Type 1 Diabetes and the experiences of people living
with this complex self-managed condition....
.....
In summary,
we would strongly support action in the following areas to reduce
risk in primary care for Australians with Type 1 Diabetes:
• Prompt diagnosis of both adults and children with Type 1 Diabetes
• Complication screening register and recall
• 24-hour secondary consultation service, telephone-based, for
GPs and hospital doctors to access a team with expertise in Type 1
Diabetes
• Help Desk – 24-hour phone and email access to specialist
advice
• Pre-determined Diabetes Plans for management of emergencies
• National system for annual education of schools about common
medical conditions
• Routine screening and review of mental health "
Read
the full submission... (PDF, 6 pages, 189KB)
Responses
From: Dr Nicola Dunbar, Program Manager,
Australian Commission on Safety & Quality in Health Care, 17 October
2008
Dear
Kate,
Thank
you very much for your detailed letter regarding Type 1 diabetes and
issues concerning patients at risk in primary care. It is a very useful
contribution to this consultation and helps me better understand the
needs and priorities of people with Type 1 diabetes. I willl be continuing
to consult over the next month, and in December will be making recommendations
to our Commissioners about what actions the Commission can usefully
take to improve the identification and management of patients at risk
in primary care. I may be in touch with you as I prepare the paper
for the Commissioners, and will certainly let you know the outcomes
of this process.
Regards,
Nicola
Nicola
Dunbar
Australian Commission on
Safety and Quality in Health Care
Issue:
Insulin Pumps and the Prostheses List
To:
Federal Minister for Health
3 October 2008
"I
am writing to express our sincere thanks for your recent decision
to establish a new part of the Prostheses List for clinically effective
and cost effective devices which will ensure that insulin pumps remain
accessible to many Australians with Type 1 Diabetes..."
Read
the full letter...
From:
Federal Minister for Health to
To: Medical Technology Association of Australia
23
September 2008
"I
have asked the PDC to establish criteria for a new part of the List
for clinically effective and cost effective devices that are not surgically
implanted but with an internal part that is integral to its effectiveness
and designed to combat a pathological process or modulate a physiological
process, such as insulin pumps."
Read
the full letter...
Issue:
Invitation to Launch of A Statement of Issues affecting Australians
with Type 1 Diabetes
To:
All federal and state Ministers,
and Shadow Ministers, responsible for Health
3 August 2008
"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
Statement of Issues effecting Australians with
Type 1 Diabetes will be launched on Friday 29th August at 2.30pm
.... We would like to invite you, or a representative of your Department,
to attend ...."
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)
Apologies
for the Launch event received from:
- Nicola
Roxon MP, Minister for Health
- John
Hill MP, Minister for Health, Government of South Australia
- Jillian
Skinner MP, Shadow Minister for Health, NSW
- Dr
David Hurley, Clinical Lead, Endocrine Health Network, WA
- Judi
Moylan MP, Chair, Parliamentary Diabetes Support Group
- Minister
Giddings, Minister for Health, Tasmania
- Vickie
Chapman MP, Shadow Minister for Health, South Australia
- Dr
Christine Bennett, National Health & Hospitals Reform Commission
- Dr
Mal Washer MP, Federal member for Broome, Parliamentary Diabetes
Support Group
- Daniel
Andrews MP, Minister for Health, Victoria
- Michelle
Lensink MLC, Assisting Shadow Minister for Health, SA
- Mr
Jim McGinty MLA, Minister for Health, Western Australia
- John-Paul
Langbroek MP, Shadow Minister for Health, Queensland
- Verity
Firth MP, Minister assisting the Minister for Health, NSW
- Joe
Hockey MP, SHadow Minister for Health and Ageing
Issue:
Type 1 Diabetes in the ACT
To:
President and CEO, Diabetes Australia-ACT
28 June 2008
"The
Type 1 Diabetes Network endorses the call for improved services for
people with Type 1 Diabetes which has been made by the Canberrans
at last weekend’s forum, and congratulates attendees on the
constructive and practical suggestions that were generated."
Read
the full letter...
Responses
From:
Mr Gordon Melsom, CEO and Terri Berenguer, Manager Health Programs,
Diabetes-ACT
28 October 2008
"In
February 2008, our Health program initiated monthly consumer seminars
to cover a number of important issues for people with diabetes. ....
Diabetes ACT has recently put in a submission for funding to support
young adults and adolescents with Type 1 diabetes to cover their Medicare
gap payments. .... In
collaboration with our National Office, Diabetes Australia has completed
a resource booklet for people with Type 1 Diabetes this year.
We trust
most issues raised in your letter to the CEO on 16th October have
been addressed with the exception of the coffee evenings, and these
and numerous other social events have been held in the past. These
were discontinued however due to lack of interest by members. Given
the busy programs as described above, we do not have the resources
to resurrect them."
Read
the full response here... (PDF, 2 pages, 1.2MB)
Issue:
Introducing the Type 1 Diabetes Opinion Leaders Group
To:
Federal Minister for Health & Ageing
State government Ministers for Health
Federal & State Government Opposition Spokespersons
Chair, National Health & Hospitals Reform
Committee
Parliamentary Diabetes Support Group
15 June 2008
"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...
Read
attachments to the letter:
Type
1 Diabetes Opinion Leaders Group Membership List
Type
1 Diabetes in Australia: A Review, 2008
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 response... (PDF, 490KB)
From: Michelle Lensink MLC, Assisting
Shadow Minister for Health, South Australia, 3 July 2008
"Thank
you for your letter ... I wish you well with your endeavours."
Full
response... (PDF, 196KB)
From: Paul Lynch MP, Minister Assisting
the Minister for Health, New South Wales, 9 July 2008
"Thank
you for your letter ... The NSW Government has a strong commitment
to communication with consumers and carers to inform decision making
.... Thank you for bringing your Network's progress to my attention."
Full
response...
(PDF, 226KB)
From: Jillian Skinner MP, Shadow Minister
for Health, New South Wales, 10 July 2008
"I
read your background paper with interest, and share your concerns
that greater awareness needs to be accomplished. It is a concern that
close to 90,000 Australians have Type 1 Diabetes and that it has increased
by 21 per cent in children between 2000 and 2005. Please keep me informed
and updated with your progress...." Full
response... (PDF, 630KB)
From: Guy Barnett, Liberal Senator for
Tasmania, 14 July 2008
"May
I congratulate you on this excellent initiative and if you think I
can contribute I would be delighted .... I would be pleased to offer
my ongoing support to your organisation and am keen to be kept informed
of your future reports and actvities.
On
another matter the JDRF Kokoda Trek was most rewarding...."
Full response... (PDF, 704KB)
From: John Hyde MLA, Parliamentary Secretary
to the Minister for Health for Western Australia, 16 July 2008
"Type
1 Diabetes continues to be a priority for WA Health. This is reflected
in the recently released Diabetes Model of Care for Western Australia
developed by the Endocrine Health Network .... [who] would likenmto
be kept informed fo the work of the Diabetes opinion Leaders Group."
Full response... (PDF,
340KB)
From: Verity Firth MP, Minister Assisting
the Minister for Health for New South Wales, 5 August 2008
"....
Diabetes both Type 1 and Type 2 are on the increase and it is important
that there is continued effor to improve the prevention (Type 2),
diagnosis and management of the disease. The importance of your Network
and Opinion Leaders Group is that they allow many organisations that
focus on diabetes to communicate and come together with one voice.
As well it gievs people with diabetes teh forum to question and discuss
issues that affect them.
Yoru
website is attractive and appealign and the forum section provides
the opportunity for immediate and in some cases emotional discussion
to take place. People living with Chronic Disease need this type of
support ...." Full
response... (PDF, 691KB)
From: Daniel Andrews MP, Minister for
Health, Victoria, 2 September 2008
"The
Victorian government is committed to improving the health of Victorians,
including finding a cure for type 1 diabetes and its complications
through research. The government provides research funding to major
teaching hospitals and biomedical research institutes through a range
of grants..." Full
response... (PDF, 593KB)
From: John Hill MP, Minister for Health,
South Australia, 6 September 2008
"I
congratulate you ... on developing the Type 1 Diabetes Opinion Leaders
Group.... The Type 1 Diabetes Network provides an important service
to those South Australians diagnosed with Type 1 diabetes and and
their families.... South Australia's Health Care Plan 2007-2016 provides
for: lifestyle coaches/care coordinators ... chronic disease management
programs... GP Plus Health Care Centres...
Unfortunately
I was unable to attend the launch ... I would appreciate being kept
informed of your Group's progress..."
Full response... (PDF, 618KB)
Issue:
Indefinite Referrals
To:
Medicare Consumer Consultative Committee via
Dr Christine Walker, Chronic Illness Alliance
1 June 2008
"We
would like to highlight the frequent misapplication of Medicare rules
with regards to indefinite referrals which is impacting upon the care
of many people with Type 1 diabetes....
We would
welcome any initiatives which saw Medicare:
• raising awareness amongst specialists of the requirement to
accept indefinite referrals, and the correct application of the ‘initial
consultation’ fee;
• providing an avenue for consumers to formally and anonymously
raise concerns with Medicare directly where they believe policies
are not being applied correctly’;
• raising awareness amongst consumers of the availability of
indefinite referrals; and
• aligning the Enhanced Primary Care Program with evidence-based
practice for more complex conditions such as Type 1 diabetes such
that the consultant physician item (132) for a comprehensive assessment
can be applied at critical points during the course of a life-long
condition, not only at diagnosis."
Read
the full letter...
Response
From: Medicare Australia, 13 October
2008
A
lengthy response, individually addressing each of the examples provided
in our June letter, has been received.
In
summary, the advice appears to be that:
- GPs
hold complete discretion about whether they choose to issue an indefinite
referral
- Specialists
must accept indefinte referrals indefinitely
-
Changing your GP or consulting a new GP, does not require a new
version of your indefinite referral. Your indefinite referral remains
valid where the specialist attendances are for the same medical
condition.
- In
regards to the specialist charging a new consult fee rather than
a follow up consult. The referral provided to the specialist is
an indefinite referral that remains valid for the same condition.
Initial consultations are only payable where there is a new course
of treatment (unrelated condition).
Our
proposal to "align the Enhanced Primary Care Program with evidence-based
practice for more complex conditions such as Type 1 diabetes such
that the consultant physician item (132) for a comprehensive assessment
can be applied at critical points during the course of a life-long
condition, not only at diagnosis" was not addressed in the response.
For
more information, we have been encouraged to contact Medicare Australia
on - Patient enquiry line: 132 011, or Provider enquiry line: 132
150.
Read the
full response...
Issue:
Consumer Input to the NDSS Supply
Chain review
To:
Federal Minister for Health
30 January 2008
"We
understand that the Department of Health and Ageing recently launched
a review of the National Diabetes Services Scheme with specific regard
to the effectiveness of delivery mechanisms and supply-chain management
for diabetes supplies .....
Could
you please advise whether there is a consumer consultation phase included
in this review? And if so, how our members might be able to contribute
their experiences and suggestions towards this process?"
Read the full letter...
Issue:
Pre-Budget Submission
To:
The Treasurer of the Commonwealth of Australia
January 2008
"
The
Challenge:
Recommended blood glucose control, management of risk factors and
complication screening rates are achieved by less than 20% of those
with Type 1 diabetes (Bryant et al., 2006, Gilbert et al., 2006).
....
Recommendation:
The Type 1 Diabetes Network recommends that evidence-based clinical
practice guidelines for the management of Type 1 diabetes in adults
be developed collaboratively by health professionals and consumers
and that these guidelines be produced for the use of both health professionals
and consumers. "
Read the full
submission...
Response
From: Chief of Staff, Office of the Treasurer,
5 February 2008
"Community
views are a critical consideration for the Government when forming
its budget policies, and your submission will be taken into account
during the decision-making process."
Read the full response...
Issue:
“DANA Diabecare IISG [insulin pump] Guarantees normal blood glucose
control.”
To:
Australian Competition & Consumer Commission
January 2008
"
Dear
Sirs,
We would like to bring to your attention the activities of a medical
devices manufacturer which we believe to be both:
• misleading or deceiving a consumer; and
• acting unconscionably ......
It is
of further concern that the representative of this company in Australia
is the NSW arm of the national peak body representing people with
diabetes in Australia. A formal and publicised affiliation of this
kind, naturally provides support and endorsement of a product to a
consumer. The more vulnerable people in our community (many people
with long-term diabetes experience devastating health impacts from
the condition and desperately seek improved treatment methods) would
be especially drawn to a promise such has been asserted here where
it is supported by a peak consumer body ...
Insulin
pump therapy is a safe, effective and sometimes revolutionary therapy
for people with Type 1 diabetes. It is not, however, a cure or a magic
bullet as is being asserted by Sooil Development Company Limited with
support from Diabetes Australia-NSW. "
Read the full letter...
To:
Australian Competition & Consumer Commission
January 2008
" We
would like to bring to your attention the activities of a medical
devices manufacturer which we believe contradicts the Therapeutic
Goods Advertising Code, specifically the following points:
Advertisements
for therapeutic goods must not be:
• likely to arouse unwarranted or unrealistic expectations
of product effectiveness;
• mislead directly or by implication or through emphasis,
comparisons, contrasts or omissions;
• contain any claim, statement or implication that it is infallible,
unfailing, magical, miraculous, or that it is a certain, guaranteed
or sure cure;
• contain any claim, statement or implication that it is effective
in all cases of a condition "
Read the full letter...
Responses
From: Executive Officer, Complaints Resolution
Panel, 31 January 2008
"The
advertiser has been notified that a complaint about the advertisement
for the product has been received. The Complaints Resolution Panel
is scheduled to meet each month and considers the complaints as soon
as possible. .... You
will be kept informed appropriately."
Read the full
response...
From: Assistant Director, Canberra Enforcements
Branch, ACCC, 31 January 2008
"I
do note that in the expanded information on insulin pumps, the anticipated
outcomes of the use of insulin pumps do not use the term 'normal'
in the same way ....
"My
analysis of the site does not provide any evidence that the trader
is selling directly to consumers, in particular Australian consumers
....
"I
appreciate all the points that you have made .... I do not intend
to take the investigation further.
"....
I will be flagging the matters you have raised with our US counterparts,
the US Federal Trade Commission ...
"I
have written to Diabetes Australia-NSW pointing out the representations
in question ...."
Read
the full response...
From: Executive Officer, Complaints Resolution
Panel, 26 May 2008
"The
Complaints Resolution Panel has considered the complaint ... on 10
April 2008. .... The Panel decided to treat the complaint as withdrawn
under 42ZCAF9a) on the basis that the website is not an Australian
website, only refers to an Australian distributor, and does not fall
within the jurisdiction of the Panel."
Read
the full response... (PDF, 550KB)
Issue:
Submission
to the Victorian Health Promotion Framework Consultation
To:
Victorian Government Department of Human Services,
September 2007
"
The introduction
to the framework states that its focus excludes people with 'established
disease' or 'controlled chronic disease'. Our organisation believes
that firstly, the term 'chronic disease' is being misused in this
context, and secondly, the principles of health promotion, and the
framework proposed, are extremely relevant to the population who have
a chronic disease, most especially when considered with its true meaning.
We would
like to highlight an important confusion in terminology - in your
writings the term chronic disease is being used to refer to conditions
with modifiable risk factors .... but excludes long-term or chronic
diseases which occur (often much earlier in life) without the presentation
of risk factors, such as Type 1 diabetes, rheumatoid arthritis, multiple
sclerosis and epilepsy to name but a few. This latter group of conditions
and their affected populations have quite a separate nature to those
with 'modifiable risk factor chronic diseases' and the rationale presented
for excluding those with established disease or controlled chronic
disease from a health promotion framework no longer applies when chronic
disease is more accurately defined. "
Read
our full submission ...
Responses
None
received as at
November 10, 2008
Issue: The Don't Ignore Diabetes campaign
To:
Federal Minister for Health
September 2005
"Dear
Mr Abbott,
We need
to alert you to a serious issue which is confronting the community
of people affected by diabetes in Australia. We have been grateful
for your government’s support through the funding for insulin
pumps and an islet transplant research centre in recent times, and
know that you understand the complexity of the disease with which
we live.
The
Don’t Ignore Diabetes campaign run by Diabetes Australia this
year is an inappropriate use of scare tactics in social marketing.
The advertisements show gruesome images of an eye being operated on,
people on hospital beds undergoing renal dialysis, treatment for heart
attack and stroke and an amputation
....
Now
that we have already been subjected to this disturbing campaign, what
can be done?
We propose
two actions.
1. Psychological
support for people living with diabetes be given greater importance
through the development of a national strategy.
....
2. A
thorough evaluation be undertaken of the Don’t Ignore Diabetes
campaign which includes its impact on people already living with diabetes."
Read the full letter ...
Responses
From: Nathan Smyth, Assistant Secretary,
Health Priorities and Suicide Prevention Branch, Federal Department
of Health & Ageing
"Dear
Ms Gilbert and Ms Seed,
Thank
you for your letter of 29 September 2005 to the Minister for Health
and Ageing ..... I am advised that the campaign followed three years
of formative research conducted by Diabetes Australia Western Australia
....
I would
like to take this opportunity to assure you that the Australian Government
is aware of the burden of disease that diabetes represents in the
Australian community, including the psych-social aspects."
Read the
full the letter...
From: Professor Don Chisolm,
Former Chariman, National Diabetes Strategy Group
"Over
the years there have been repeated debates within the diabetes movement,
about the possible benefits and possible adverse effects of media
material which dramatises the complications of diabetes. It may be
difficult to strike the right balance - but I appreciate your concerns."
Read
the full letter...
For
further enquiries about any issues raised on this page, please don't
hesitate to contact us.
Page
last revised
November 10, 2008
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