- Screening, diagnosing and managing diabetes and obesity
Overview
4.1Early detection and diagnosis are crucial for achieving positive outcomes for patients with any form of diabetes. If the early signs of diabetes are missed, opportunities to slow the progression of the disease become limited. Throughout the inquiry, the Committee thus examined the current screening and diagnosis protocols for diabetes, and sought to identify opportunities for improving these practices in Australia.
4.2Diabetes can lead to serious complications. Common conditions that can arise as a consequence of diabetes include heart disease, stroke, dementia, eye disease, kidney disease, foot and lower limb complications, and dental issues. In addition to considering these complications, the mental health impact of the disease – which has been described as a ‘silent diabetes complication’ – is also noted in this chapter.
4.3Managing diabetes and obesity – along with complications associated with these conditions – is a complex process, which often requires support from different health care specialists, and management and treatment options that are tailored to suit the needs of individual patients. In acknowledging this fact, the following sections focus on tools and programs that are currently available for managing diabetes and obesity, such as the annual cycle of care, Medicare Benefits Schedule (MBS) subsidies, and the Diabetes in Schools Program, as well as potential initiatives that might strengthen the current management framework.
4.4It is evident that the number of diabetes patients in Australia requires a well-trained health workforce to help manage the burden of the disease. In noting a range of difficulties that both patients and health professionals face in managing diabetes and its complications, this chapter concludes by outlining some of the opportunities identified during the inquiry for better diabetes management solutions across the health care system.
Screening and diagnosing diabetes
4.5Screening is the only practical way to detect diabetes in its early stages. Early diagnosis, in turn, allows individuals to take pre-emptive action to delay the onset and successfully manage the condition.
Type 1 diabetes
4.6For Type 1 diabetes, diagnosis most often occurs when a person presents to the doctor with symptoms. The early warning signs of Type 1 diabetes are commonly referred to as the ‘4Ts’. These are:
- Tired (unexplained or excessive fatigue)
- Thirsty (unquenchable thirst)
- Thinner (unexplained weight loss)
- Toilet (needing to use the toilet to urinate more often).
- Delayed diagnosis of Type 1 diabetes after symptoms have already developed often leads to a high incidence of hospital admissions to intensive care and an increased risk of long-term complications.
- Approximately 900 people are hospitalised each year with diabetic ketoacidosis because the early warning signs of Type 1 diabetes are missed. Diabetic ketoacidosis occurs when the level of ketones – a type of chemical produced in the liver when there is not enough insulin – is too high. Diabetes Australia explained that diagnosis of Type 1 diabetes can be achieved before the onset of diabetic ketoacidosis by looking for high glucose and high A1C levels (being the percentage of haemoglobin proteins in the blood coated with sugar) present in patients before the clinical onset of diabetes.
- Genetics seems to play central role in development of Type 1 diabetes. The Type1Screen Program based at Royal Melbourne Hospital currently provides free bloodspot screening for family members of people with Type 1 diabetes to improve early detection.
- Accurate screening is important to determine how far a patient’s Type 1 diabetes has progressed. Type 1 diabetes has three stages, which are determined based on the autoantibody status, hyperglycaemia, and associated symptoms. The Murdoch Children’s Research Institute highlighted that ‘accurate screening depends on accurate detection of islet autoantibodies, a highly specialised area of pathology that requires expert oversight and national reference methodologies.’
- Detecting Type 1 diabetes early enables opportunities for intervention that may slow or delay the development of the disease. Diabetes Australia told the Committee that screening, when combined with medications such as teplizumab, can delay the development of Type 1 diabetes by up to three years. The Murdoch Children’s Research Institute also discussed the importance of detecting Type 1 diabetes in its earlier stages:
People who are identified as having either Stage 1 or Stage 2 T1D [Type 1 diabetes] are the candidates for a disease modification therapy that will prevent T1D. They will also benefit by monitoring of progression of Stage 1 or Stage 2 ensuring prevention of severe initial clinical presentations of T1D [Type 1 diabetes] such as diabetic ketoacidosis, a potentially lethal complication which occurs in approximately 35% of children presenting with type 1 diabetes in Australia. Annual follow up of at-risk children has essentially eliminated the risk of diabetic ketoacidosis in Australian and international cohorts.’
4.12The Juvenile Diabetes Research Foundation (JDRF) Australia is currently conducting a Type 1 Diabetes National Screening Pilot to determine the best model for routine Type 1 diabetes screening. The pilot study is supported by the Type 1 Diabetes Clinical Research Network, which was established in 2010. Envisaged to run for three years, this initiative aims to detect markers of Type 1 diabetes and assess attitudes towards population screening.
4.13The pilot study screens infants by using either heel prick blood spot or saliva cheek swab method to determine their genetic risk of developing Type 1 diabetes. The results allow researchers to monitor infants identified as having a high genetic risk of developing Type 1 diabetes and conduct autoantibody testing. The feasibility of autoantibody testing using dried bloodspot screening samples for children aged two, six and ten years old is also currently being explored. JDRF told the Committee that if the pilot is successful, Australia could become the first country in the world to introduce a national Type 1 diabetes screening program for the general population.
4.14Submitters and witnesses said that greater awareness of Type 1 diabetes was needed to improve screening and diagnosis. For example, Diabetes Australia recommended a national awareness campaign to increase awareness of the 4Ts to support screening and diagnosis of Type 1 diabetes. Similarly, the National Rural Health Alliance called for diabetes awareness and early detection programs to improve timely diagnosis and in doing so avoid preventable complications and morbidity among rural Australians.
Type 2 diabetes, pre-diabetes and obesity
4.15Early detection of Type 2 diabetes can reduce a person’s risk of developing complications and other conditions associated with the disease. Type 2 diabetes develops over a long period of time where the body becomes resistant to insulin and loses the capacity to naturally produce sufficient insulin in the pancreas. Lifestyle changes, such as a healthier diet and increased physical activity, may slow the progression of Type 2 diabetes for some people.
4.16The primary screening measure for Type 2 diabetes in Australia is the Australian Diabetes Risk Assessment (AUSDRISK) tool. AUSDRISK assists people to assess their risk of developing Type 2 diabetes within the next five years. The tool was developed by the Baker Institute for Heart and Diabetes in 2010 as part of a joint initiative from the federal and state and territory governments. Consultations with a general practitioner for Type 2 diabetes risk evaluation are subsidised by the MBS.
4.17The submission from the Department of Health and Aged Care drew the Committee’s attention to the current guidance for Type 2 diabetes and pre-diabetes screening by the American Diabetes Association (ADA). ADA recommends testing for adults with a body mass index (BMI) above or equal to 25kg/m2 who have one or more risk factors for diabetes, and any person with gestational diabetes or human immunodeficiency virus. In all other adults, ADA recommends testing from the age of 35. In cases where a person has been diagnosed with pre-diabetes, testing for diabetes should be conducted annually.
4.18The Royal Australian College of General Practitioners (RACGP) recommended the general population be screened for Type 2 diabetes every three years from the age of 40, and annually from the age of 18 for Aboriginal and Torres Strait Islander people to improve opportunities for early intervention.
4.19Type 2 diabetes is diagnosed through fasting blood glucose and HbA1c tests, followed by a glucose tolerance test when necessary. HbA1c stands for glycosylated haemoglobin, which develops when haemoglobin joins with glucose in the blood. While the HbA1c test has significantly improved diagnosis, there are still an estimated 500,000 people in Australia living with undiagnosed Type 2 diabetes.
4.20Pre-diabetes is diagnosed when blood glucose levels are higher than normal, but not high enough be considered Type 2 diabetes. Approximately one third of people with pre-diabetes will develop Type 2 diabetes within ten years. The Rural Doctors Association of Australia recommended investing in screening to identify people with pre-diabetes to allow early intervention.
4.21Obesity is generally diagnosed based on BMI that is equal or greater than 30 kg/m2 and/or waist circumference. Sydney Low Carb Specialists highlighted, however, that this method of diagnosis can be problematic as:
…individuals who are thin on the outside but metabolically unwell (normal weight obese) have multiple markers for metabolic syndrome despite their normal body mass index (BMI). This could be explained by their adipose storage threshold being low, they do not store excess triglycerides in their adipose tissue but rather viscerally and ectopically such as liver, skeletal muscle and pancreas which further worsens dysregulated insulin signalling and consequent elevated blood glucose.
4.22There are currently no national screening programs for Type 2 diabetes, pre-diabetes or obesity in Australia. Many people are unaware that they are at risk, which can delay opportunities for timely screening and diagnosis. Ms Janine Dawson, Diabetes Prevention Manager at Western Sydney Diabetes, told the Committee about her organisation’s work with Blacktown Workers Club and reported:
…we've found that 50 per cent of people who are at risk don't realise they are. When we give them opportunities to change, they take them. I think part of it is detection, but also giving people opportunities to do things that they want to do.
4.23The Committee heard about a local Type 2 diabetes screening program that was trialled by Western Sydney Diabetes at Blacktown and Mount Druitt Hospital emergency departments over a six-year period starting in 2016. The program measured blood glucose and HbA1C levels for all adults undergoing blood sampling in the emergency department. The trial found that 18per cent of individuals had HbA1C levels indicative of diabetes and 22 per cent had diabetes.
4.24Western Sydney Diabetes replicated the program across eleven medical centres throughout the Western Sydney Local Health District (WSLHD). Clinical records for patients in the WSLHD indicated 8.6 per cent of adults had been diagnosed with diabetes. The results similarly found that 30 per cent of patients had pre-diabetes, and 18 per cent had diabetes. In its submission, Western Sydney Diabetes concluded that these results indicate about ten per cent of individuals in the WSLHD are undiagnosed, ‘representing a missed opportunity for early detection and management.’
4.25Although the program succeeded in identifying people with Type 2 diabetes and pre-diabetes, Associate Professor Milan Piya, Clinical Academic Endocrinologist at Campbelltown Hospital, believed that testing all patients arriving at emergency is not viable:
…because of the cost of the HbA1c but also the fact that if you do an HbA1c usually it comes back the next day and patients have moved on. You need someone to take responsibility for those thousands of patients that actually have had an HbA1c done. If it's high and no-one picks it up, there's no point in screening.
4.26The Committee also heard about a local Type 2 diabetes screening program led by Austin Health in Melbourne. Austin Health’s Diabetes Discovery Initiative performed HbA1c checks on all patients admitted to Austin Health aged 54 and over. The initiative found that one third of patients had diabetes, including approximately five per cent who were undiagnosed, and another third were found to be living with pre-diabetes.
Gestational diabetes
4.27Most women are screened for gestational diabetes between 24 and 28 weeks of pregnancy. Women who might be at higher risk are often tested earlier.
4.28Gestational diabetes is diagnosed using an oral glucose tolerance test (OGTT). This process involves an initial blood test to assess fasting blood glucose levels. A sugary drink is then consumed and followed by another blood test one and then two hours later. A diagnosis of gestational diabetes is made if the blood glucose levels are above the normal range in the fasting, one, or two hour test. Sydney Low Carb Specialists suggested that many women diagnosed with gestational diabetes had undiagnosed pre-diabetes prior to pregnancy.
4.29Women diagnosed with gestational diabetes have a higher risk of serious complications during pregnancy and labour. Diabetes Australia explained:
For the mother complications can include hypertension, pre-eclampsia and requiring caesarean section. Babies born to mothers diagnosed with GDM [gestational diabetes] are at increased risk of premature birth, macrosomia, stillbirth, respiratory distress, hypoglycaemia and jaundice… With appropriate care and support during pregnancy, many of these complications are preventable.
4.30Some women may decline or delay screening for gestational diabetes because they are concerned about how a diagnosis of gestational diabetes will affect their pregnancy. Dr Zoe Bradfield, Vice President of the Australian College of Midwives, estimated the number of women declining screening was less than five per cent, but observed that women are increasingly declining the oral glucose tolerance test as ‘it’s an uncomfortable and unpleasant mechanism for them to be diagnosed’ and because many women working full time cannot take the time away from work needed to complete the test.
4.31Miss Leah Hardiman, who has experienced gestational diabetes, told the Committee:
Women report that it often dominates their pregnancy. Every antenatal appointment, they will be discussing their weight, what they've eaten, what the results are and whether they're testing four times a day. Women say that they don't get to ask the questions or enjoy the pregnancy because this dominates every question. It does feel quite judgemental at times… as though somehow they're doing harm to their baby that they never intended to do… We also haven't measured what this is costing women financially, either, with additional appointments, parking fees, childcare fees, loss of income owing to the increased amount of appointments, having to relocate—some have to relocate to a tertiary facility at 36 weeks if they live in regional, rural or remote areas. The cost of that on their psychological health—being away from their children if they can't take them—is something we have never measured.
Diagnostic criteria
4.32There was substantial debate within the evidence received to the inquiry about the criteria used to diagnose gestational diabetes in Australia. RACGP submitted that the diagnosis of gestational diabetes ‘has been a controversial area for decades, with guidelines based on consensus agreement.’
4.33The Australasian Diabetes in Pregnancy Society (ADIPS) recommended changes to the way gestational diabetes was diagnosed in 2014. According to the ADIPS guidelines, a diagnosis for gestational diabetes
is made based on the 75g OGTT with one or more of the following values:
- fasting plasma glucose ≥5.1mmol/L
- 1-hour post 75g oral glucose load ≥10.0 mmol/L
- 2-hour post 75g oral glucose load ≥8.5 mmol/L.
- The RACGP expressed concerns about the ADIPS guidelines, which have resulted in a sharp increase in the number of patients diagnosed with gestational diabetes since 2014 and prompted concerns about overdiagnosis. RACGP explained that overdiagnosis of gestational diabetes means that women are undergoing unnecessary interventions and health resources are being wasted. Professor Paul Glasziou told the Committee the number of women diagnosed with gestational diabetes has doubled under the ADIPS guidelines.
- RACGP recommended that the criteria for gestational diabetes testing and screening should be reviewed based on updated evidence. Similarly, Professor Jenny Doust argued that ‘[m]ore treatment does not always mean better outcomes’ and called for an independent review of the process of diagnosing gestational diabetes in Australia.
- ADIPS recommended funding for a national continuous quality improvement process for gestational diabetes to include regular review of guidelines and models of care including addressing communication and mental health needs, telehealth and workforce development models.
- In appearing before the Committee, Professor David Simmons, ADIPS President, suggested the guidelines for screening and diagnosing gestational diabetes should be further strengthened as diagnosing gestational diabetes at 24 to 28 weeks of pregnancy can be too late and recommended earlier testing at 10 to 12 weeks.
Postpartum screening
4.38Women who have had gestational diabetes during pregnancy have a higher risk of developing Type 2 diabetes later in their lives. Associate Professor Vincent Wong, Director of Diabetes and Endocrine Service at Liverpool and Fairfield Hospitals, told the Committee that women who had gestational diabetes in pregnancy are at a 40 to 50 per cent risk of developing Type 2 diabetes within ten years. Professor Wong expressed concerns about the lack of programs to manage this cohort, and commented on the small number of women who complete their postpartum follow-up.
4.39The Australian College of Nurse Practitioners emphasised the importance of follow-up care for women who had gestational diabetes during their pregnancy to prevent Type 2 diabetes and calls for the available support for women with post-gestational diabetes to be reviewed. Some women, however, are unable to seek Type 2 diabetes screening due to cost and other access barriers. For example, Belinda Moore, a nurse who has worked in diabetes education since 2013, explained:
…the only professionals they can access to do this is via a general practitioner or private practice medical specialist. Women either cannot afford private practice specialists or cannot access a general practitioner because they do not bulk bill or they cannot get an appointment. We need credentialed diabetes educators who had already developed a therapeutic relationship with women who had gestational diabetes throughout their pregnancies to be able to continue supporting women post pregnancy so they can keep working at reducing their risk of developing gestational diabetes.
Diabetes-related complications
4.40Diabetes can lead to a range of serious health outcomes. Many complications are preventable with early detection and treatment. According to the Department of Health and Aged Care, complications can include:
…heart disease; stroke; eye disease, including retinopathy; kidney disease; peripheral vascular disease; nerve damage; foot problems; gum disease; and mental health impacts including treatment-related distress, anxiety, and depression.
4.41Screening for diabetes-related complications is a crucial part of diabetes management. The Australian Patients Association (APA) highlighted that most people with diabetes will experience at least one complication in their lifetime, even if they achieve adequate glycaemic control. The APA also estimated diabetes-related complications cost the federal health care budget $2.0 billion each year.
4.42Throughout the inquiry, the Committee heard substantial evidence in relation to the following diabetes-related complications:
- Heart disease
- Stroke
- Dementia
- Eye disease, including diabetic retinopathy
- Kidney disease
- Foot and lower-limb complications
- Dental complications and
- Mental health impacts.
Heart disease
4.43Heart conditions are the most common diabetes-related complications and they are the leading cause of death in people with diabetes. For many people, heart complications can be prevented or delayed if they are detected early when treatments are most effective.
4.44The Heart Foundation of Australia explained:
Despite improvements in therapies that lower blood glucose or address other CVD [cardiovascular disease] risk factors, people with diabetes are at least twice as likely to develop CVD [cardiovascular disease] and its manifestations and complications including coronary artery disease, stroke, atrial fibrillation, heart failure, and peripheral arterial disease...
The risk of developing heart disease is even higher in people with longstanding diabetes, microvascular complications, and suboptimal glycaemic control, and also in women, people who develop diabetes before age 40, and First Nations people.
4.45Diabetes Australia recommended Australians living with diabetes and at elevated risk of heart complications be able to access the most effective and accurate diagnostic tools as soon as practicable.
Stroke
4.46People living with diabetes are 1.5 times more at risk of stroke than the general population. The Australian Chronic Disease Prevention Alliance (ACDPA) observed increasing rates of stroke in people under the age of 65 around the world, and attributed this increase ‘at least in part, to an increase in the rate of modifiable stroke risk factors such as type 2 diabetes and obesity and overweight.’ Diabetes can cause pathologic changes in blood vessels, which can cause stroke when blood vessels in the brain are affected.
Dementia
4.47People living with diabetes are twice as likely to develop dementia than the general population. About 4000 people living with diabetes develop dementia each year. Dr Paul Mason explained:
The brain, which accounts for a small percentage of body mass but a significant amount of energy consumption, is particularly vulnerable to metabolic diseases. The close link between dementia and metabolic disease is evident from research showing that obesity increases dementia risk, and brain volume decreases with higher body mass index.
4.48One submitter told the Committee that ‘treating doctors should be more transparent about the connection between ongoing low blood glucose levels and dementia, which I personally did not know about until a few months ago, despite having diabetes – and frequent low blood sugars – for over three decades.’
Eye disease, including diabetic retinopathy
4.49Diabetes is the most common cause of preventable blindness in Australia. Optometry Australia told the Committee that almost all people with Type 1 diabetes and more than half of people with Type 2 diabetes will be affected by diabetic retinopathy in their lifetime. Professor Hugh Taylor AC explained:
…everybody with diabetes will develop diabetic eye disease if they live long enough, and 98 per cent of that vision loss can be prevented if it's detected and treated. But once the vision is lost from diabetes, it can't be restored. People can no longer look after themselves or their diabetes once they've lost the vision.
4.50Diabetic retinopathy may be asymptomatic, especially in its early stages. Timely diagnosis facilitated by regular eye examinations is therefore crucial to patient outcomes. However, about 50 per cent of Australians do not get regular eye examinations.
4.51Diabetes retinopathy can be successfully managed with improved glycaemic control, eye injections and laser therapy. If left untreated, however, it can cause blindness. To help people manage diabetes-related eye complications, the Department of Health and Aged Care supports KeepSight program, which promotes the importance of regular eye checks.
Kidney disease
4.52Diabetes is the most common cause of end-stage kidney failure in Australia and people living with diabetes are 12 times more at risk of end-stage kidney disease than the general population. Diabetes Australia estimated 330,000 people living with diabetes in Australia have chronic kidney disease, and 10,000 people will experience kidney failure and require dialysis or transplant.
4.53Diabetes-related kidney disease costs the Australian economy around $2.68 billion each year, with kidney failure accounting for around $1.9 billion of this cost. People with diabetes and chronic kidney disease are also more vulnerable to other diabetes-related complications, such as diabetic retinopathy and foot complications, as well as other complications, such as anaemia, metabolic bone disease and infections.
4.54Diabetes Australia recommended the implementation of a National Diabetes Kidney Disease Screening Program to ensure people living with diabetes have access to regular kidney checks.
Foot and lower-limb complications
4.55Diabetes can cause nerve damage and poor blood circulation, which can lead to foot-complications. Up to 85 per cent of non-traumatic lower limb amputations in people with diabetes in Australia can be prevented. Diabetes, however, remains the most common cause of non-traumatic lower limb amputations in Australia.
4.56Diabetes foot complications are difficult to detect, prevent and treat. Regular foot care is therefore crucial to prevention. The Australian Podiatry Association Limited submitted:
Inadequate treatment can result in serious complications, including lower limb amputation and mortality. Regrettably, numerous examples exist where mismanagement of foot-related issues, stemming from poorly handled diabetic foot conditions, has resulted in dire outcomes.
4.57The Department of Health and Aged Care supports Food Forward, an initiative preventing diabetes-related amputations, to help people to manage their diabetes-related foot complications.
4.58Delayed foot care can have severe consequences. The Australian Podiatry Association Ltd explained that diabetic foot ulcers (a common outcome when foot care is neglected) occurs in an estimated 19 per cent to 34 per cent of people with diabetes during their lifetime. Noting the prevalence of foot complications for people with diabetes, the Australian Podiatry Association Ltd recommended a standardised national approach to allow podiatrists to conduct various neurovascular, lower limb, and foot assessments and ensure ongoing foot health care for patients at risk of low limb complications.
4.59Similarly, the Australian Diabetes Society called for funding to establish a National Diabetes Foot Disease Prevention program:
A 20% reduction in foot complications would equate to the prevention of 300 deaths, 880 amputations, 5,520 hospital admissions and $320 million in direct health care costs every year in Australia. This program will have a focus on managing the key reversible risk factors, working in continuity with community-based diabetes care and accredited interdisciplinary services.
4.60Treating all wounds early and effectively is also central to preventing the deterioration of diabetes-related foot complications. The AMA explained the need for better wound care management for diabetes patients:
Patients with diabetes often suffer chronic wounds, which take longer to heal and increase a person’s risk of developing infections and other complications… Every three hours of every day, one Australian loses a lower limb as a direct result of a diabetes-related foot disease.
4.61The AMA recommended the Australian Government fund a wounds consumable scheme in general practice to improve wound care management in relation to diabetes.
Dental complications
4.62Dental complications are often a poorly understood part of diabetes management. In his submission to the inquiry, Dr Andre Priede noted:
When I was first diagnosed with Type 1 diabetes, I received extensive education and support on how to prevent the acute and chronic complications of a disease that impacts all parts of the body, with one very important omission: the mouth. Referrals were made to various healthcare professionals… to check my eyes, feet, heart and kidneys. A “head to toe” check-up, but one that excluded my mouth. There was never any discussion on the oral complications of diabetes, how they might be prevented, and how oral disease may impact my blood glucose control.
Mental health impacts
4.63Living with diabetes can have serious impacts on a person’s mental health. While many people with diabetes may experience mental health or emotional health challenges, these challenges are rarely discussed as part of routine diabetes care. Diabetes Australia described the mental health impacts of diabetes ‘as a silent diabetes complication.’ Mental health challenges can make managing diabetes more difficult and may lead to an increased risk of complications and hospital admissions.
4.64The Department of Health and Aged Care referenced data from the National Health Survey 2022, in which approximately 43 per cent of people over the age of 15 with diabetes (Type 1, Type 2 and unknown) reported experiencing moderate, high, or very high psychological distress.
4.65Many people seeking specialised diabetes mental health care reported difficulties including high costs, limited number of subsidised visits under a mental health care plan, limited availability of professionals, and a lack of professionals with specific knowledge of diabetes-related mental health care.
4.66Miss Emily Klimek, a volunteer advocate for JDRF Australia who lives with Type 1 diabetes told the Committee:
I'm 15 years old, and I have had type 1 diabetes, also known as T1D, since I was two. I am speaking on behalf of the 130,000 with type 1 and also the eight more that will diagnosed tomorrow. I think T1D is very misunderstood, and it absolutely sucks having it. You never get a day off, and every day there's a different challenge that comes up.
4.67Miss Nicola Hames recounted her experience being diagnosed with Type 1 diabetes during year 11 in high school:
At 16 I had just started entering into life, and by 16 and a half, I felt I didn’t deserve it, because I was made to feel like a burden to the system. I was bullied in school, called “obese” despite a normal BMI, and a “junkie” for my need to inject insulin. I was told I was “faking it” to get more time in exams, and made to feel like my disease was just in my head. I don’t blame my peers for this; they didn’t know any better, and I barely did either. My physical health was at an all-time low, and my mental health was no better. We could not afford the additional psychology sessions I required outside what my GP had provided as part of a mental health care plan. My psychologist wanted to see me once every week or fortnight, and at the best time I was able to go once every month which was completely insufficient for my needs at the time.
4.68Another submission, provided by an individual who was diagnosed with Type 2 diabetes in 1996 at age 40, said:
During my first few years as a diabetic the adjustments were difficult to deal with. In the midst of a very busy working career, raising a young family, I struggled with not only a physical change in my body but also one that affected my state of mind that resulted in mild depression. Following diagnosis, I also developed diabetic neuropathy that affects my muscles throughout my body. It has meant regular ongoing treatments for the past 26 years consisting of remedial massage and visits to combinations of both physiotherapy and chiropractors. Therefore, it was, and is still, a multi-faceted battle.
4.69In its submission, NSW Health advocated for greater access to clinical psychology assessment and management for people with diabetes distress and emphasised the positive results of a pilot study at Nepean Hospital following the introduction of a clinical psychologist to its diabetes service.
4.70The Department of Health and Aged Care drew the Committee’s attention to the Diabetes Youth Zone initiative, which was launched in October 2023. Dr Leanne Laajoki, Director of Chronic Conditions Strategic Policy explained:
…the Diabetes Youth Zone… has a really strong focus on emotional wellbeing for young people, who can share their stories living with diabetes. It sets up supports with family, friends, psychologists and support teams. It recognises that diabetes impacts mental health. People with mental health conditions obviously are also quite more disproportionately impacted if they do get chronic disease. So we do recognise the bidirectional nature and recognise that in our overarching diabetes strategy as well as the national strategic framework for chronic conditions.
4.71The Committee was deeply impacted by the submission provided by Mr Ian Cavanagh, who in August 2023 lost his son Liam, a young man with Type 1 diabetes. Mr Cavanagh described the challenges that Type 1 diagnosis presents for adolescents, and called for more mental health funding for young people with diabetes:
During Liam's decline I spent hours on Google researching the link BTW [between] Diabetes and depression.
I searched for a psychologist that specialised in that field.
If I'd had success […]
You may not be reading this.
Managing diabetes and obesity
4.72Managing diabetes and obesity is a challenge as each patient is unique, and has varying levels of access to the necessary tools and treatment. Throughout the inquiry, the Committee heard from many people living with different forms of diabetes about how they manage their disease. Some submitters and witnesses described what has worked well, and others discussed the challenges with finding the right way to manage their diabetes.
4.73Professor Steve Robson, President of the Australian Medical Association (AMA), summarised the importance of good diabetes management:
We all know that, if diabetes gets out of control, you're going to end up in an emergency department or as a hospital inpatient. That's the very costly end of care. Managing diabetes well—keeping great blood-sugar control, being onto wounds early, making sure medication management is right—isn't very exciting, but, boy, it pays off and it saves an enormous amount of money by keeping people out of those tertiary care environments where care is expensive.
4.74Type 1 diabetes is managed through blood glucose monitoring and insulin replacement. Ms Jane MacDonald, who has lived with Type 1 diabetes for more than 20years, described the experience of managing Type 1 diabetes as ‘…an unrelenting cognitive burden… with us 24/7, 365 days a year. There is no holiday from diabetes, no break and it can be challenging and exhausting.’
4.75Patients with insulin-dependent Type 2 diabetes manage their condition in a similar manner as Type 1 diabetes patients. Type 2 diabetes that is not insulin-dependent is generally managed through lifestyle factors, such as a healthy diet that maintains adequate blood glucose levels, exercise to regulate insulin in the body and regular blood glucose monitoring. Some people may need medication to manage their Type 2 diabetes. These measures can also slow the progression of Type 2 diabetes. Keeping blood glucose levels under control is crucial to preventing diabetes complications.
4.76Gestational diabetes is managed with a good diet, regular exercise and blood glucose monitoring. Some women may require medication or insulin replacement to manage their gestational diabetes if blood glucose levels cannot be maintained within target range with diet and exercise alone. ADIPS indicated that about half of women with gestational diabetes require insulin injections, and therefore need support with further education and close review.
4.77If they are insulin-dependent, people living with other types of diabetes (Maturity Onset Diabetes of the Young, Latent Autoimmune Diabetes in Adults, or Type 3c diabetes) manage their disease in a similar way to people with Type 1 diabetes using insulin injections.
4.78Some of the approaches for managing diabetes and obesity in Australia include:
- Annual cycle of care
- Chronic Disease Management Plans (CDMPs) and other MBS subsidies
- Diabetes in Schools Program.
Annual cycle of care
4.79People living with all forms of diabetes are encouraged to review their diabetes management and general health checklist with their doctor each year as part of the ‘Diabetes Annual Cycle of Care.’ The annual cycle of care aims to support people to manage their diabetes and identify and treat complications early.
4.80As part of the annual cycle of care, diabetes patients are encouraged to undergo the following health checks:
- Blood Glucose (HbA1c) check: Every 3 months
- Emotional wellbeing check-in: Every visit
- Kidney check: Yearly
- Blood fats check: Yearly
- Blood pressure check: 6 monthly
- Eye check: Every 2 years
- Foot check: 6 monthly
- Medication review: Yearly
- Dietary intake check: At least yearly
- Physical activity check: At least yearly
- Smoking status check: Every visit if applicable.
- More information about the annual cycle of care is available from the National Diabetes Services Scheme.
- Diabetes Australia observed that
most Australians living with diabetes are not getting regular health checks including:
- 50% not getting HbA1c checks
- 29% not getting their blood pressure checked
- 51% not getting their cholesterol checked
- 73% not getting their kidneys checked
- 41% not getting their weight checked.
- Diabetes Australia submitted that the removal by the Government of the annual cycle of care MBS incentive in 2022 has further hindered the already low uptake of health checks: ‘While the uptake of the incentive was low (around 18%), its existence helped reinforce the importance of these checks with GPs.’ Similarly, NSW Health recommended the MBS items be reintroduced to support the annual cycle of care as this process is time consuming and appropriate remuneration is therefore needed to support GPs.
Chronic Disease Management Plans and other Medicare Benefits Schedule subsidies
4.84People with diabetes are eligible for five sessions subsidised by Medicare under a Chronic Disease Management Plans (CDMPs) over a 12-month period with health professionals identified by the treating GP to form part of the patient’s care.
4.85Concerns about the limited utility and scope of CDMPs were common issues raised in the evidence received to the inquiry. Submitters and witnessed generally agreed that five sessions were not enough to provide the necessary support to diabetes patients and called for CDMPs for diabetes patients to be expanded.
4.86Some submitters called for the number of sessions subsidised by the MBS through a CDMP to be increased from five to ten, and others suggested the number of sessions be increased to 15 or 20. Further, the National Retail Association recommended CDMPs be expanded to allow people with diabetes to access five visits with each allied health professional every year, rather than five sessions in total.
4.87The Australian Diabetes Educators Association drew attention to the low uptake of CDMPs by Aboriginal and Torres Strait Islander people due to socio-economic barriers, such as a lack of access to Credentialed Diabetes Educators (CDEs), dietitians, exercise physiologists, and other health practitioners, as well as the lack of culturally appropriate health care.
4.88More broadly, NSW Health highlighted that despite the subsidised access to allied health services facilitated by a CDMP, many patients were faced with large gap payments, which presents a barrier for patients from lower socio-economic backgrounds to access the services.
4.89People with pre-diabetes, gestational diabetes or obesity are currently ineligible to access CDMPs based on these factors alone. People with pre-diabetes are eligible for a CDMP only if they have another chronic health condition, even though pre-diabetes is a key risk factor for both cardiovascular disease and Type 2 diabetes. People living with obesity are ineligible to access CDMPs as this condition is not recognised as a chronic disease in Australia. Women with gestational diabetes are also ineligible to access CDMPs as their disease is not considered chronic.
4.90In this context, Diabetes Australia recommended access to CDMPs be expanded ‘to cover people living with prediabetes to support them in accessing expert evidence-based preventive healthcare including nutrition, physical activity, stress management and sleep.’ Furthermore, the Royal Australasian College of Physicians (RACP) recommended MBS items for obesity management should be introduced to support primary health management, covering weight assessment, examination of complications, and physical and psychological support.
4.91ADIPS noted the costs of accessing allied health professionals privately for women with gestational diabetes and recommended an MBS care plan for women with gestational diabetes be introduced to support their care. The Australian Diabetes Educators Association made a similar recommendation to provide MBS-reimbursed visits for women with gestational diabetes to see a CDE during both pregnancy and the postpartum period.
4.92Private Healthcare Australia explained that the Private Health Insurance (Health Insurance Business) Rules 2018 prevent health funds from paying nurses and nurse practitioners to provide CDMP services. This peak body recommended the definitions for CDMPs set out in rules be amended to allow private health funds to facilitate a more flexible health care for people living with diabetes, or who are at risk of developing diabetes.
4.93Submitters also called for longer MBS-funded consultations for people with chronic diseases. For example, the Australian Diabetes Educators Association submitted:
Current MBS item numbers for diabetes education do not adequately reflect the time and expertise required by CDEs to deliver comprehensive care. Introducing new MBS item numbers, such as a 60-minute initial consultation, an extended 30-minute regular consultation, and a new double length 40-minute consultation, with appropriate fee adjustments, will allow CDEs to provide evidence-based, patient-centred care. Adequate reimbursement will support longer consultations, ensuring individuals receive the necessary education and support to manage their diabetes effectively. A blended funding model for diabetes management ensures that patients receive not only medical interventions but also essential access to a multi-disciplinary care team. A blended funding model can address the complicated factors that cause diabetes and result in optimal health outcomes, while decreasing healthcare costs into the future.
4.94Diabetes Australia recommended case conferencing – which brings together relevant medical professionals to discuss a patient’s condition – to be improved to ensure rural and remote general practices have access to diabetes care and management by endocrinologists and CDEs in private practice or at tertiary diabetes centres.
4.95NSW Health’s submission discussed innovative and alternative models currently being developed and implemented across NSW to enhance the primary care sector’s capacity to support people with diabetes. For example:
South Western Sydney is working with the PHN [primary health network] to deliver an integrated model of care for diabetes. Primary care clinicians have been provided with referral pathways and consistent referral criteria and referral forms to clearly guide appropriate escalation of care to Diabetes Specialist Services (embedded into GP software and HealthPathways) or referral to GP case conferencing.
South Western Sydney has implemented an evidence-based case conferencing model shown to achieve significant improvements in glycaemic control in Type 2 diabetes. This model redirects referrals away from tertiary services and provides capacity building for primary care clinicians including GPs and Practice Nurses. Type 2 diabetes case conferencing clinic days are in high demand.
The GP case conferencing is funded by the PHN [primary health network], on a contract basis year by year. It requires ongoing funding to ensure it is embedded into usual care.
4.96NSW Health recommended funding and incentives for primary care and private providers to participate in joint general practice and specialist case conferencing, and integrated care services.
Diabetes in Schools Program
4.97The Department of Health and Aged Care supports Diabetes in Schools, a program providing information and training to families and schools to help them to better support students with Type 1 diabetes.
4.98Diabetes in Schools is an information program aimed at students living with Type 1 diabetes. The program was launched in 2020 to provide information and education for families and school staff to support safe diabetes management and medication administration. More than 5000 schools and 100,000 school staff have voluntarily participated in the program.
4.99The program is currently offered in some regional and remote locations in Victoria, Western Australia and South Australia. Diabetes Australia submitted that:
A number of pilots are currently underway to further expand the reach of the program in regional and remote Australia beyond existing delivery in many regional and remote locations across WA, SA and Victoria.
- Queensland Childrens Hospital is adopting a hub and spoke train the trainer and telehealth model to support delivery of Level 3 Training in schools across Mackay and Townsville (and the broader region via telehealth).
- John Hunter Hospital is servicing schools across Tamworth and Taree via a train the trainer model.
- The Canberra Hospital will expand outside of the ACT into country NSW.
- Royal Children’s Hospital is focussing their pilot on students with complex needs in regional Victoria.
- Dr Helen Woodward described the Diabetes in Schools program as a ‘resounding success’ because it allowed parents of children with diabetes to return to work as school staff are supported with the necessary skills to look after children with diabetes.
- Several submitters called for the Diabetes in Schools Program to be expanded to include:
- Type 2 diabetes, to support early detection, referral and management for young people living with Type 2 diabetes
- Aboriginal and Torres Strait Islander school students living with Type 2 diabetes
- Preschool and childcare settings.
- The Committee also received evidence expressing concerns about the Diabetes in Schools program. For example, one submitter stated:
We feel completely let down by the so called ‘Diabetes in Schools’ program as supplied by Diabetes Australia and to date, have not seen any evidence of this program supporting us, or being relevant to our child or our school.
4.103Some submitters called for the Diabetes in Schools program to be suspended and reviewed. For example, the Australian Paediatric Society expressed serious concerns over:
a. how complex care can be delivered to ALL Australian students with T1D [type 1 diabetes].
b. how non-medical staff can receive the requisite accreditation and qualifications from a Registered Training Organisation.
c. legal compliance requirements to protect children, school personnel and Health care professionals.
4.104A parent of a child recently diagnosed with Type 1 diabetes shared the experience with the program and noted that it:
…sets an unrealistic expectation on the school, and medically untrained teachers to fulfil complex health care and medical management for children/students with a chronic health condition within a school setting. Since having a child in our school who has recently been diagnosed with Type 1 Diabetes, I have come to understand that there are serious and potentially catastrophic outcomes for the child if the wrong action is undertaken, medication or treatment was provided. It has highlighted that tasks required of teaching staff are outside of a teacher’s scope of practice. Additionally, through my own enquiries it is my understanding that the decisions and medication management (of the potent S4 drug ‘insulin’) are to be performed by a nurse or equivalent, and that there is no training course that meets this requirement… Some staff have opted not to administer insulin as it has high risks associated with it.
Role of the health care system in managing diabetes, obesity and related complications
4.105Effective management of diabetes and obesity requires the support of a multidisciplinary health care team, which may include any combination of different professionals such as general practitioners, diabetes nurse educators, endocrinologists, CDEs, dietitians, optometrists, podiatrists, dentists and psychologists.
4.106In examining how Australia’s health care system is positioned with respect to diabetes management, the inquiry focused predominantly on following themes:
- Challenges accessing health care and specialist support
- Challenges impacting the health care workforce
- The lack of awareness of diabetes within the healthcare system.
Challenges accessing health care and specialist support
4.107There are a range of challenges experienced by people with diabetes and obesity that prevent them from accessing health care and specialist support. The access is particularly challenging in regional, rural and remote locations.
4.108Mr Ray Messom, Chief Executive Officer at Western Sydney Primary Health Network, emphasised that rising out-of-pocket costs are making Australia’s health care system ‘less equitable and a far cry from universal.’ As one submitter reflected on the cost of managing Type 1 diabetes:
Personally, I have experienced financial hardship due to being a Type1. Due to the ongoing complications I now have from being Type1, an average month between medication, consumable and health insurance, I am out of pocket over $400 before I have medical appointments.
4.109Limited access to GPs, especially bulk-billed GPs, was a common barrier identified in the evidence to the inquiry. For example, in her submission to the inquiry, Dr Kathryn Williams pointed out that:
While there is a strong movement to have obesity addressed in primary care, issues related to low access to affordable GP consultations in rural and remote areas and for those with adverse social determinants of health who are also at risk of more severe obesity and its complications need to be addressed first to avoid potential inequity that may be exacerbated as a result.
4.110Some submitters discussed the advantages of telehealth as a means to improve access to care. For example, the Rural Doctors Association of Australia submitted that virtual care could improve the timeliness and connectedness of healthcare when complemented with in-person care and a multi-disciplinary approach to diabetes. The RACP recommended funding to reinstate telehealth base specialist consultations, including complex consultations to support access and equity for people with obesity and comorbid health risks.
4.111The AMA highlighted the barriers to accessing health care for people living in rural and remote locations, who:
…commonly experience significant health disadvantages because of geographical barriers and reduced access to healthcare compared with metropolitan communities. This leads to worse health outcomes especially for people living with chronic conditions like diabetes, who are facing longer waiting times and higher-out-of-pocket costs. The Australian Institute of Health and Welfare… revealed that hospitalisation rates for diabetes in 2019-20 were almost three times higher for people living in remote Australia compared to those in major cities. In 2020, diabetes death rates were also twice as high for people living in remote and very remote areas.
4.112The Albury Wodonga Diabetes Support Group called for funding for diabetes educator training to increase the numbers of CDEs working in regional, rural and remote areas as many patients living in these areas do not have the financial means or ability to travel long distances for health care.
4.113The Committee heard that accessing screening and treatment for diabetic retinopathy is particularly challenging for many patients across Australia in both metropolitan and regional areas. Mr Stephen Bali MP, Member for Blacktown in the New South Wales Legislative Assembly, noted that a key challenge for diabetes retinopathy patients in Western Sydney was finding accessible treatment locations. Dr Ashim Sinha, Director of Diabetes and Endocrinology at Cairns Hospital and Health Service District, told the Committee:
…there's lack of screening availability. Not every place has fundus cameras, which are so easy to use, can be put into each of these communities and health workers can be easily trained to man. It is not rocket science.
4.114Optometry Australia explained that patients often have to pay ‘substantial out-of-pocket’ costs for intravitreal injections, which are administered in the private system with low rates of bulk-billing, and stated that: ‘As a result, the necessary numbers of injections that are required for effective treatment are not always administered.’
Challenges impacting the health care workforce
4.115Throughout the inquiry the Committee heard from a range of health care sector peak bodies about the challenges they face in providing care to people living with diabetes and obesity.
4.116Mr Simon Carter, Chief Executive Officer of Jade Diabetes, noted in his submission that ‘GPs lack the time, scale and specialised training to manage diabetes effectively, but they are largely in denial about this’ and called for better use of nurse practitioners to support patients with diabetes. In drawing attention to the increasing demand for diabetes management, the Australian College of Nurse Practitioners suggested that improved Medicare rebates for Nurse Practitioners would improve access to affordable care for people with diabetes.
4.117RACP recommended consistent guidance for weight management in clinical settings and support for health professionals to understand and reduce weight bias.
4.118Expanding access to CDEs for patients will all forms of diabetes was a common issue raised throughout the evidence received by the Committee. CDEs play a central role in supporting people with diabetes to manage their disease through lifestyle interventions. The Australian Diabetes Educators Association recommended that people diagnosed with pre-diabetes should immediately be referred to a CDE.
4.119Optometry Australia explained that optometrists are well-positioned to play a role in diabetes prevention and inform patients about the impact of diabetes on eye health during routine examinations. As such, Optometry Australia recommended optometrists should be considered part of the team care arrangement for all people diagnosed with diabetes, and that a national strategy be introduced to ensure people with diabetes receive eye examinations to enable early detection and treatment of diabetic retinopathy.
4.120The Aboriginal and Torres Strait Islander Diabetes-related Foot Complications Program, South Australian Health and Medical Research Institute (SAHMRI) submitted that foot health is often poorly understood among professionals working in the non-podiatry workforce. SAHMRI recommended improving knowledge among health care professionals about the impact of diabetes on foot health and the importance of timely footcare.
4.121Mr Stuart McGrath, Medical Dhawu, Dhawu Yolngu Project Worker at Miwatj Health Aboriginal Corporation, highlighted the challenges impacting Aboriginal health workforce in East Arnhem Land:
Right now, we're stuck in this concept of creating Yolngu positions that are subordinate, meaning assistant Yolngu worker or Yolngu project worker. Instead of doing that, why don't we approach the tertiary? Right now, the professions that Yolngu people have are stuck in that sector, and that's it… So perhaps focus on VET and then talk about transitioning to higher ed…
I'm the only one in East Arnhem Land in 100 years to walk out with a bachelor's degree in nursing. It doesn't really create trust and continuity of care with a familiar face. This is not just East Arnhem Land; we're talking remote Australia. It's become a lucrative business running on agency staff, so it's a very transient population of clinicians. How can you create trust with the patient if it's just different faces every six weeks and then you ding the Yolngu patient for being non-compliant on medication? Well, hang on. I'm seeing different faces. I haven't created trust. For Yolngu people, it's always about relationship.
4.122Miss Sumaria Mary Corpus, an Aboriginal Health Practitioner and Diabetes Educator at Royal Darwin Hospital, told the Committee about public perceptions of Aboriginal health care workers in the Northern Territory, and stated: ‘We were looked at as bus drivers or interpreters. Actually, I'm clinical, and every time healthcare professionals see me they think I'm a liaison officer.’
4.123In light of the fact that Aboriginal and Torres Strait Islander communities often have high numbers of diabetes cases, and that their members are more likely than the general Australian population to develop diabetes-related complications, it was suggested that there is merit in strengthening the Aboriginal and Torres Strait Islander health workforce to support these communities. For example, Ms Sian Lee Graham, Senior Researcher and Chair of the Aboriginal and Torres Strait Islander Advisory Group at the Menzies School of Research told the Committee:
I think we need to spend time investing in the Aboriginal and Torres Strait Islander workforce in the health systems. There are ways that you can utilise Aboriginal and Torres Strait Islander people in the health system, by having them deliver information that's appropriate. They know how to talk to this mob. They speak language. We get these resources developed for urban, non-Indigenous people, so they're not culturally appropriate for our mob. And they're just full of words. We need to have resources developed in our own languages. We need to build on workforce.
4.124Professor Trent Twomey, National President of the Pharmacy Guild of Australia, highlighted the role that pharmacists can play in health care:
The average Australian visits their community pharmacy 18 times a year, which is more than any other primary healthcare access point. Specifically, you've mentioned First Nations Australians, who… have higher rates of undiagnosed diabetes and higher rates of diabetes. The specific training that we have deals with the specific therapeutic guidelines for First Nations people. There are different eligibility criteria. There are at times different treatment guidelines, and that is to take into account the uniqueness of providing care to First Nations Australians…[O]ur pharmacy is co-located and embedded with Gurriny Yealamucka, the community controlled health organisation over there... There are other community controlled health organisations in our footprint, such as Wuchopperen, Mamu and Apunipima, if we're looking at the Cape... Working with these organisations is just part of what we do on an everyday basis. Just as we coordinate with our local general practitioner, we also coordinate with the community controlled health organisation… We are not trained to treat diseases. We're trained to treat people. We do a full examination for—as this cardiovascular risk reduction says, it's hypertension and dyslipidaemia as well as diabetes. We treat the whole person. We can't just screen for one of these things in isolation. If anything flags, whether it's renal function, liver function or any of the levels in the AUSDRISK or any of the other screening profiles outside of a particular range, we don't treat; we refer, as per guidelines. Though our focus of evidence today is specifically on diabetes, we just wanted to make the point we don't treat disease states; we treat people.
4.125The Melbourne Dental School suggested that oral health care providers should play a greater role in supporting diabetes screening and management. Its submission highlighted that for some people, a dental visit may be their only interaction with the health care system each year. Oral health disease, such as periodontitis, ‘may be an early sign of diabetes and therefore be a useful risk indicator for diabetes screening.’ The Melbourne Dental School thus recommended that a new MBS item number in the diagnostic services category be created for diabetes screening using the AUSDRISK as part of routine dental examinations.
The lack of awareness of diabetes within the health care system
4.126Submitters and witnesses described a general lack of awareness of diabetes across the health care system. For example, in her submission to the inquiry Ms Pamela Meredith described a poor understanding of Type 1 diabetes among hospital staff:
…when I go to hospital they always muck the levels up I know how to treat with my insulin and how much I need the staff would listen to me so I know what I need for me I have been a type 1 diabetic for many seeing many changes in treatments.
4.127In her submission, Ms Siba Diqer stated she could not find a knowledgeable GP in Melbourne and needed to change endocrinologists because they were unable to provide answers to her questions, with one specialist telling her that ‘…he did not want to overwhelm me with information.’
4.128Mr Michael Pipe, who lives with Type 3c diabetes, explained in his submission that the condition is ‘largely unrecognised or ignored by many in the medical profession, including hospital staff.’ The lack of knowledge from hospital staff resulted in Mr Pipe being unable to control his insulin independently. He further recounted an incident where hospital staff confiscated his insulin to prevent him from administrating too much, which led to ‘massive swings’ in his blood glucose levels.
4.129Diabetes Australia observed a lack of awareness among aged care staff about how diabetes contributes to other health issues such as unexplained falls and urinary tract infections, which can result in avoidable transfers to hospitals.
4.130This lack of awareness can also lead to misdiagnosis. Miss Nicola Hames, who lives with Type 1 diabetes, was first diagnosed with Type 2 diabetes and given a prescription for metformin. Seven months later, Miss Hames became ill and was then diagnosed with Type 1 diabetes:
When I attended my first outpatient appointment, I had done some research and realised a pump was an option, but I failed to realise that I had missed the cut off for a subsidised pump by a measly five months, as my 16th birthday was the December prior to my diagnosis. This lead [sic] to a deep resentment for myself and the system that failed me in November. It also resulted in a string of serious hospitalisations due to Diabetic Keto-Acidosis, which prior to my first hospitalisation post-diagnosis, I had no information on, nor understanding of. My parents could not afford the insurance coverage that would allow me to be issued an insulin pump, much less the outright cost of a pump without any assistance.
4.131Professor Rowena Barrett was similarly also first misdiagnosed with Type 2 diabetes and prescribed metformin after seeing her doctor about changes to her eyesight. After being unwell for more than six weeks, her doctor correctly diagnosed her with Type 1 diabetes.
4.132Some submitters also reported the inappropriate food options offered to patients with diabetes in hospital settings. For example, one submitter explained:
Hospital policies for inpatient care often seem rigged against the health and safety of patients with type 1 diabetes in every way. The ridiculous “diabetic menu” in hospitals, which usually offers inappropriate high glycaemic index (GI) foods, high levels of artificial sweeteners, less choice than a normal menu and little if any carbohydrate information (the only thing that would actually make a menu appropriate for patients with type 1 diabetes) is forced on patients, with it being left to the patient to figure out how to get put on a normal menu. The diabetic menu seems to exist because it’s the cheapest way hospitals can pretend they care about our health and safety – instead of recruiting and training more CDEs, properly training doctors and nurses to care for patients with type 1 diabetes, and making hospital policies that allow patients with type 1 diabetes to self-manage except in circumstances where there is a proven risk of self-harm.
Committee comment
4.133Screening programs are a valuable way to identify people who are at risk of developing diabetes. They offer an opportunity to both delay the onset of, and better treat the condition.
4.134The Committee acknowledges the body of evidence indicating that many Australians with diabetes are not receiving adequate health monitoring. Patients can face a range of personal, financial and geographical barriers that prevent the optimal management of the disease. These factors must be addressed as part of any overall effort to improve diabetes treatment and management in Australia.
4.135Managing any form of diabetes is a daily challenge, with far-reaching impacts across all aspects of a person’s life. Ensuring that all those living with diabetes have access to competent, informed support and care from a multidisciplinary team of health care professionals is essential. Furthermore, health care for patients with diabetes must include access to mental health care services. There is no doubt that diabetes has an adverse impact on mental health, especially in young people, and the Committee believes that more attention should be given to this aspect of diabetes management.
4.136Throughout the inquiry, it was pressed upon the Committee that BMI was an inadequate indicator for measurement of obesity. Indeed, this is particularly evident for patients with normal-weight obesity syndrome, which is characterised by excess body fat in individuals with adequate BMI. With obesity, including normal-weight obesity, associated with increased risks of cardiovascular morbidity, insulin resistance, and other chronic conditions, greater emphasis should be placed on developing better screening and education strategies for this patient cohort.
4.137The Committee also recognises the vast challenges facing the Australia’s health care system in providing care to people living with diabetes and obesity. While the Committee acknowledges that the challenges within the heath sector are significant, it is disappointing to hear assertions as to a lack of awareness of diabetes among health care providers. All patients should have equitable access to health care providers who have received adequate training in diabetes prevention and treatment.
4.138The Committee recommends that the Australian Government explores the potential for effective national screening programs for all forms of diabetes, particularly Type 2 diabetes.
4.139The Committee recommends that the Australian Government implements a national public health campaign to increase public awareness of the early signs of all forms of diabetes mellitus.
4.140The Committee recognises the importance of early, timely diagnosis for all forms for diabetes. A diabetes diagnosis has life-changing impact a person’s life, as well as the lives of their families and friends. Greater awareness of the symptoms of diabetes and the implications of diabetes on a person’s overall health is essential to uptake of diabetes screening.
4.141The Committee recommends that the Australian Government funds the development of education-based obesity screening information and resources.
4.142The Committee recognises that obesity screening based solely on BMI is inadequate. Obesity screening should therefore have a greater focus on education.
4.143The Committee recommends that the Australian Government implements a national public health campaign to increase awareness of the importance of prevention, identification of early signs, and good management of all forms of diabetes mellitus.
4.144The Committee recommends that equitable access to health care for people living with all forms of diabetes be improved through:
- Access to longer appointments with a health care provider subsidised by the MBS
- Access to case conferencing models of health care, especially in rural and remote areas
- Access to telehealth services
- Increase in the number of item numbers for allied health consultation for those with diabetes for diabetes educators and dieticians and other allied health providers
- Access to diabetes educators, including in high-risk outer metropolitan, rural and remote communities.
- The Committee is aware of the many barriers that people face when trying to access the health care they need. The Committee recognises the difficulty of people in outer metropolitan, rural and remote areas in particular in accessing health care, including in relation to treatment of and education about diabetes. The Committee agrees that people with diabetes should be able to access longer appointments subsidised by the MBS, better access to case conferencing models healthcare, and greater opportunities for remote consultations.
4.146The Committee recommends that the Australian Government reviews the limits for accessing juvenile mental health and diabetes services, with a view to enabling young people to continue receiving support for longer.
4.147The Committee recommends the Australian Government work with the state and territory governments to develop education tools and resources to support all staff across the health care system to improve understanding of diabetes, its different forms, the early signs and management. The Diabetes in Schools program should be funded to allow all schools to access it.