Chapter 4Support for patients and families after diagnosis

5.1This chapter discusses the evidence the committee received regarding the significant impact of a rare cancer diagnosis, and the importance of increased and improved supports for rare and less common cancer patients, and their loved ones. In particular, it discusses the need for:

supporting key non-government organisations to provide essential supports and informative resources;

additional specialised cancer care nurses;

improving funding frameworks to support general practitioners to provide supportive cancer care and coordination;

increasing access and improving psychological supports; and

the need for more timely, equitable and appropriate palliative care services.

5.2It concludes with the committee’s views and recommendations on these matters.

The impact of a rare cancer diagnosis

5.3The committee heard extensive evidence about the wide-ranging, devastating personal impacts that a rare and less common cancer diagnosis can have on individuals and their loved ones.[1]

5.4For example, 32-year-old Emily who was diagnosed with rare cancer NUT carcinoma in 2019, told the committee that the emotional and psychological impacts of a rare cancer diagnosis are ‘substantial’, yet there are limited supports which leave patients and their families feeling isolated. She continued:

Limited awareness and information about rare cancers hinder patients like me from making well-informed decisions regarding treatment… Lastly, advocacy for rare cancers is often overshadowed by more common cancers, resulting in insufficient attention from policymakers and limited funding for research and support services... I have, like many others, felt alone, with limited access to support organisations, combined with a lack of commitment to government funding.[2]

5.5Milton outlined his personal experiences and perspectives to the committee – having had cancer twice himself, experienced the loss of two siblings and both parents due to cancer, as well as caring for and losing his first wife to brain cancer, and more recently, his second wife Frances, to pancreatic cancer. He similarly reflected that a cancer diagnosis is a ‘life-changing’ experience, which can often make people feel ‘powerless, out of control, and isolated'. He also observed that parents and carers don’t usually know what questions to ask, or where they can get support.[3]

5.6Further, Mrs Beau Kemp, who lost her son Ryley at the age of eight in March 2023, following a battle with Diffuse Intrinsic Pontine Glioma (DIPG), outlined the life changing impacts of such a diagnosis on families:

Our son's diagnosis was swift, disorientating and filled with uncertainty... The day before our lives had seemed blissfully perfect. Now we knew, from the whispers and stares of nurses and doctors, that our lives were about to change. We were completely ignorant and unaware that such a diagnosis could exist for such a young child and that in a first-world nation we were soon to be offered no help at all to save our son's life.[4]

5.7The sections that follow highlight that more must be done to better support individuals with rare or less common cancers, and their families, throughout this incredibly tough time.

The need for more support

5.8A significant number of inquiry participants, including individuals with lived experience, advocacy organisations, medical professionals and researchers, outlined the need for greater, and improved supports for rare and less common cancer patients and their families, after diagnosis.[5]

5.9For example, the Minderoo Foundation strongly considered that more must be done to improve the access and availability of support services after diagnosis. It noted that treatment for any cancer is difficult, but that people with rare cancers have ‘an added burden of uncertainty because they are usually presented with limited treatment options, or none at all’ as well as minimum information about their cancer type.[6]It added that patients should have access to ‘the same quality of care and ease of access regardless of complexity’.[7]

5.10Geneticists, Dr Minmin Li and Associate Professor Kathy Tucker similarly outlined that unlike more common cancers, there are little supports available following the diagnosis of a rare cancer. They also noted that there are fewer psychosocial supports available, less patient advocacy groups and less reliable information to support patients and their families.[8]

5.11Lived experience inquiry participants also outlined the need for greater supports for those with rare cancers. For instance, Glen – who outlined his experiences following his wife Masumi’s diagnosis of a rare form of lung cancer in 2022, and his own diagnosis of renal cell carcinoma, a rare kidney cancer in 2023 – observed support inequities dependent on cancer type:

Our experience with the public hospital system in Australia has been that support very much depends on what kind of cancer you are afflicted with - like some cancers are more important than others.[9]

5.12Judi, who was diagnosed with pancreatic cancer in 2021, also echoed these concerns. She told the committee that through her experience, she observed that ‘the type of cancer you have impacts the support available’ and that some cancers have major gaps in knowledge, treatment options and support available.[10]

Cancer care navigation and coordination needs

5.13Submitters and witnesses made clear that physical and emotional impacts of a rare and less common cancer diagnosis can also be compounded by challenges presented by having to navigate the complex health system, make difficult decisions about treatment and care, manage the financial impacts of your diagnosis, and juggle a multitude of medical appointments.[11]

5.14Robert, who lives with neuroendocrine cancer, told that committee that he lives ‘every day with the challenge of navigating a complex health system and a complex disease, with no support from the government’.[12]

5.15Michelle, who lost her life partner Mark after a 28‑month battle with stage 4 pancreatic cancer, told the committee that being Mark’s primary carer as he underwent intense treatment, ‘was a jarring lesson in project management’. She added that they were left to navigate a ‘wildly new, complex and terrifying world with no realistic support of anyone with in-house knowledge or lived experience’.[13]

5.16Kate, who lost her niece Emily, at age four in 2023, after a battle with neuroblastoma, similarly explained the difficulties in cancer care navigation that families can experience whilst trying to care for their sick child:

More support is needed during treatment and at the post-treatment stage, including emotional support for families who, at the same time as trying to care for their sick child, must research clinical trials, investigate alternative treatments, chase test results, interpret test results, source second opinions and desperately try to understand what all this means for their child.[14]

5.17Various other submitters also noted these issues, including NeuroEndocrine Cancer Australia which outlined that navigating the healthcare system is extremely challenging, but especially for a cancer that is little known or understood.[15]

Best practice patient-centred, supportive care and survivorship services

5.18According to the Victorian Department of Health, supportive care in cancer is ‘an umbrella term used to describe services that may be required by those affected by cancer’. It includes self-help and support, information, psychological support, symptom control, social support, rehabilitation, spiritual support, palliative care, and bereavement care.[16]

5.19Several inquiry participants noted the importance of supportive care,[17] including Cancer Australia which recognised that patient-centred, supportive care is a vital part of cancer treatment and care.[18]

5.20The Daffodil Centre and the University of Sydney Cancer Research Network similarly explained that access to evidence-based supportive care is crucial for improving patients’ quality of life, prognoses, and for reducing inequities between patient groups.[19]

5.21In a joint submission, Cancer Council Australia, the Cancer Nurses Society of Australia, the Clinical Oncology Society of Australia, Private Cancer Physicians of Australia, the Medical Oncology Group of Australia and the Lung Foundation Australia (Cancer Council Australia) noted that ensuring the delivery of adequate supportive care services is a challenge given constrained resources in the health system, and due to the fact that the health system generally prioritises the delivery of treatment instead. Cancer Council Australia advised that this can result in the supportive care needs of people with cancer being overlooked and emphasised the economic benefits of investing in supportive care:

This is despite evidence to suggest that for every dollar invested in supportive care, patients and the system can benefit from up to $9 in social return.[20]

Survivorship services

5.22The Department of Health and Aged Care (the department) outlined that historically, follow-up care has focused on monitoring for cancer recurrence and second primary cancers. However, it explained that as people live longer following their cancer diagnosis, care following cancer treatment is becoming ‘a fundamental part of the cancer control continuum’.[21]

5.23Dr Matthew Magarey, Board Director of Head and Neck Cancer Australia told the committee that this concept is known as ‘survivorship’:

This concept of survivorship—which is relatively new in terms of the cancer world—is one where people are looking at the idea that if we're keeping people with cancer alive, then we want to keep them alive well. We need to allow them to survive and to enjoy their lives.[22]

5.24Cailtin, who was diagnosed with stage 4 clear cell ovarian cancer in 2017, reflected on her own cancer journey and noted the importance of survivorship care:

… cancer is lonely - there is a lack of support for advanced cancer patients, who can now live for many years. Especially those aged 25 - 55 with advanced and rare disease. Survivorship involves a multidisciplinary approach, integrative oncology has been essential for me to not just survive, but really thrive too.[23]

Existing supports for patients and their families

5.25The committee heard that currently, those affected by rare and less common cancer can access supports through the following avenues, which are explored further below:

non-government organisations, charities, and peer support initiatives;[24]

Aboriginal community controlled health organisations;[25] and

government funded services.[26]

Non-government organisations, charities, and peer support initiatives

5.26Several witnesses and submitters outlined that charities and cancer advocacy organisations often fill the gap in supports that are available to rare and less common cancer patients, and their loved ones.[27]

5.27The committee also heard that many Australians affected by rare and less common cancers lean on each other, through various peer support groups and other online and local initiatives, established by individuals with lived experience to help others navigating similar journeys.[28]

5.28Judi, who is living with pancreatic cancer, outlined the invaluable supports that she accessed through both non-government advocacy organisations and peer support groups throughout her cancer journey:

The biggest thing that gave me support was finding an informal support group, just by accident. With their lived experience, they have been able to help me in this journey … you go to the Cancer Council—and they're fantastic—and they just have an all cancer group, and you're lumped into that. There's no expert dealing with people with pancreatic cancer … I have been really lucky to have been able to access support through groups like Pancare, PanKind and through my informal support group. These organisations are filling a gap. They shouldn't necessarily have to be.[29]

5.29Megan, mother of Kira who was diagnosed with neuroblastoma in 2022, outlined how she has leant on a variety of charities throughout her family’s cancer journey, lamenting that these important services were not embedded in the health system or funded by government:

Currently, my family and others rely on the support available via charities to fill this gap. Charities provide emotional support, counselling, and access to safe playgroup/kindergarten programs. These were not as forthcoming via the hospital system or government funded programs… Oncology Units, School Liaison Nurse, a role critical in ensuring schools know how to keep children with ports, central lines, feeding tubes and immunocompromised systems safe, is also funded by charities, not by the hospital, not by government.[30]

5.30Queensland Health flagged that often patients do not know that these non‑government support organisations exist, and that their lack of funding hinders the capacity of these ‘fundamental community and patient [services]’.[31]

5.31Rare Cancers Australia told the committee ‘in the absence of nationally available and accessible support services for people with [rare and less common] cancers’ it has taken a lead role in creating and delivering such services to ‘to alleviate some of the stress, complexity and hardship experienced by patients, carers and families’.[32]

Aboriginal Community Controlled Health Organisations

5.32National Aboriginal Community Controlled Health Organisation (NACCHO) explained that the Aboriginal Community Controlled Health Organisation (ACCHO) sector is ‘a significant component of the cancer ecosystem’ playing an essential role in providing holistic, culturally safe comprehensive care for Aboriginal and Torres Strait Islander people and their families.[33]

5.33NACHHO outlined that providing culturally safe follow up care and support is crucial in helping Aboriginal and Torres Strait Islander community members to ‘survive and thrive with cancer’ and that culturally tailored, community based survivorship programs can strengthen cancer care for Aboriginal and Torres Strait Islander people.[34]

5.34NACCHO also recognised the importance of Aboriginal and Torres Strait Islander communities being able to share their lived experience with others via support groups, and further explained that spiritual care and connections to other Aboriginal and Torres Strait Islander cancer survivors, are key components to survivorship programs.[35]

5.35NACCHO specifically recommended that funding be allocated to ACCHOs to provide survivorship programs to enable community members to connect, share their lived experience, and receive ongoing post treatment care as needed.[36]

5.36Overall, the committee heard about the amazing work of a multitude of non‑government organisations, charities, advocacy groups and individuals, that are striving to improve, and increase supports for Australians with rare and less common cancers across the country. A number of these inquiry participants are listed in the following table:

Government funded supports

5.37Patients and their families can also access both federally and state‑funded support services.[37]

5.38The department outlined that it has invested in a range of initiatives to ‘ensure all people diagnosed with cancer, regardless of their cancer type’ have access to supports after diagnosis. This includes:

Information and advocacy: funding to rare cancer advocacy organisations to increase awareness, expand information resources, and educate medical professionals.[38]

Emotional and wellbeing support: such as launching the Cancer Hub, a digital tool that provides cancer navigation, counselling and support for people under 25 and their parents. The department also outlined its investments in mental health and suicide prevention through various programs, and the Better Access initiative, under which people with rare and less common cancers may be able to access up to 10 Medicare-subsidised mental health services per calendar year.[39]

Cancer care navigation and coordination: supporting tumour-specific nurses for people diagnosed with breast, prostate, lung, ovarian cancer and melanoma.[40]

Australian Cancer Plan and supportive care

5.39Under Strategic Directive Two, ‘Enhanced Consumer Experience’, of the Australian Cancer Plan (the Plan), Cancer Australia recognises that supportive care is priority area for action.[41]

5.40Cancer Australia highlighted that to deliver nationally equitable outcomes and experiences in cancer control, Australia's health systems ‘must provide tailored, appropriate, and adequately resourced services to all Australians in need—when, where, and how they need them’.[42]

5.41Further details on Strategic Directive Two of the Plan, and the relevant goals and timelines for this work, are outlined in the following figure.[43]

Source: Cancer Australia, Australian Cancer Plan, Strategic Objective 2: Enhanced Consumer Experience, www.australiancancerplan.gov.au/so/enhanced-consumer-experience (accessed 22 April 2024).

5.42Cancer Council Australia noted that the Plan recognises the need to ‘directly identify and address the supportive care and cancer navigation needs of people with all kinds of cancers in a person-centred way’.[44] However, it emphasised that to achieve equity in cancer care, ‘particular focus, attention and resources’ must also be allocated to deliver on these aspirations of the Australian Cancer Plan for rare and less common cancers, including neuroendocrine tumours.[45]

5.43Particular support issues and gaps, as well as options to address these matters, are outlined in the sections below.

Availability of information for patients

5.44Several inquiry participants outlined the need for greater access and availability of information to patients and their families, throughout their cancer journey.[46]

5.45For example, Rare Cancers Australia submitted that Australians affected by rare and less common cancers, require information to assist them in making decisions about their treatment and in understanding their disease.[47]

5.46However, Rare Cancers Australia explained that due to the number of rare cancers, small patient populations and a paucity of experts in these cancers, there is less information and support available to patients, their support networks and clinicians. Further, it explained how this lack of information can impact on the wellbeing of patients, and their access to support services:

It can be difficult to find the most knowledgeable local expert or support services to help a patient with a rare cancer to best manage their illness. This brings significantly higher unmet needs in the domains of psychological well being, the provision of reliable information and access to supportive services.[48]

5.47Judi, who was diagnosed with pancreatic cancer in 2021, submitted that it is ‘vital to empower people affected by cancer diagnosis’ and explained why access to such information is so important:

Access to information enables patients like me to make informed choices about every aspect of the cancer journey and enables them to take the driver’s seat, assisting them to feel empowered to complete that journey knowing more about their direction, the destination, and their choices and options.[49]

5.48Milton similarly outlined the need for ‘easy access to reliable information, from trusted sources’ and echoed that people must be able to make informed decisions at every stage of their cancer journey.[50]

5.49The department noted that it has ‘made targeted investments’, to the following organisations, to provide patients with rare and less common cancers information and resources:

NeuroEndocrine Cancer Australia;

Pancare Australia;

Head and Neck Cancer Australia;

Canteen Australia;[51] and

Cancer Council Australia.[52]

5.50The department also acknowledged the work of Rare Cancers Australia and Cancer Council Australia in providing information, factsheets and resources for specific cancer types, including rare and less common cancers.[53] The committee also understands that several non-government cancer advocacy organisations provide information and guidance resources,[54] as well as helpline services[55] to their respective patient groups.

5.51However, Rare Cancers Australia noted that in recent years, it has observed growing demand to support people to navigate the everyday challenges their cancer diagnosis presents.[56] It also indicated that as more and more people are impacted by rare and less common cancers, initiatives such as these will need to be expanded and further resourced, ‘so the ever-growing needs of Australians living with cancer can continue to be met, and better experiences and outcomes can be achieved’.[57]

Calls for additional investment in cancer care nurses

5.52A significant number of inquiry participants outlined the need for wider provision of cancer care nurses to support patients and their families affected by rare and less common cancers.[58]

5.53Dr Melanie Wutkke, Head of Medical Oncology, and Dr Tom Walwyn, Staff Specialist in Paediatric, Adolescent and Young Adult Oncology at the Royal Hobart Hospital both described the important role of specialist cancer nurses and explained that these staff often have expert knowledge about the diagnosed disease, or disease area, as well as the usual pathways, treatments and side effects, to help patients navigate their cancer journey.[59]

5.54Dr Wuttke, along with her colleagues Dr Walwyn and Dr Anna Johnston, outlined the invaluable range of supports that cancer nurses can provide to patients, including:

sitting in on consultations with patients and providing further explanation afterwards to reiterate key information;

coordinating medical investigations;

arranging transport to hospital and assisting patients to applying for patient travel and accommodation scheme funding;

facilitating links with outpatient health services;

taking calls from patients and families if they're worried about symptoms, or if they need someone to listen to them;

provide advice to carers about supportive care needs;

providing advice to patients and their carers about what should be brought to the attention of oncologist or other specialists, or what is less important;

attending appointments with patients if they don’t have family member supports; and

providing follow-up support to families of patients who have passed away.[60]

5.55Anita, who outlined her own experiences and perspectives to the committee, after being diagnosed with a rare form of lung cancer in 2014, broadly advocated for more specialist cancer nurses to be available across the country:

I would like to see more specialist cancer nurses spread throughout Australia. Nurses that can be educated about the specific rare cancer of the patients living in their communities. Instead of the families having to spend hours researching the rare cancer their loved one has, the specialist nurse helps them research and navigate... This way the loved one has more time and energy to spend with the patient. The support for the family in navigating the system and having a medical background, would smooth the process for the patient and provide invaluable support.[61]

5.56Other inquiry participants with lived experience of rare cancers, either directly themselves, or through a loved one, also advocated for expanded cancer nurse supports.[62] Pharmaceutical companies Ipsen, Bristol Myers Squibb Australia, and Novartis further outlined the critical role of these nurses supporting patients in the community.[63]

5.57Novartis specifically recommended that the Australian Government increase investment in specialist cancer nurses for Australian’s diagnosed with rare and less common and neuroendocrine cancers, to support optimised patient care and improve outcomes:

Dedicated cancer nurses can make a positive difference on patients navigating a cancer diagnosis. Dedicated cancer nurses are ideally placed and skilled to optimise patient care while minimising risk to patients, and to work within systems and with patients, carers, and families to improve patient safety and the patient experience as a routine part of their role.[64]

5.58Some inquiry participants, including Dr Melanie Wuttke, Ipsen and the National Rural Health Association, noted the success of the McGrathFoundation’s breast cancer nurse program.[65] The National Rural Health Association considered this model could be explored for other cancers:

The McGrath Breast Care Nurse model of care, supported by the Royal Flying Doctor Service, provides good support for people living in remote areas. Our membership suggests this model be enhanced in rural Australia, with similar models explored for other cancers.[66]

5.59Caitlin, who lives with stage 4 clear cell ovarian cancer, also advocated for an expansion of this model:

I would love to see all cancer patients have dedicated informed nurses (such as in the breast cancer model). This should be standard best practise [sic] for high quality person centred care to ensure that no patient is left behind.[67]

The Australian Government ‘All-cancer nurse service’

5.60Mrs Arianne Hermann, Acting First Assistant Secretary at the department, outlined that a key component under the government’s Australia Cancer Nursing and Navigation Program, which provides a total of $186.2 million over four years from 2023–24, is the ‘All-cancer nurse service’.[68]

5.61Mrs Hermann noted previous government investments in breast care, prostate cancer, lung cancer and melanoma nurses, but informed the committee that this new initiative is ‘designed to be an all-cancer nurse service’, which aims to provide a similar level of service across the country, no matter what type of tumour patients have.[69]

5.62According to the Minister for Health and Aged Care, the Hon Mark Butler MP (the Minister), total government funding for this all-cancer nurse service is $74.5million. The Minister outlined that through this program, the McGrathFoundation will build on its ‘well-established model’ to recruit 100new all‑cancer nurses.[70] He outlined the total number of Commonwealth funded cancer care nurses and expected implementation timeframes:

These nurses will be in addition to the existing 148 Commonwealth-funded melanoma, breast and lung cancer nurses who will work together to support all cancers by 2026-27, resulting in almost 250 Commonwealth funded all cancer care nurses by 2027, delivered through the McGrath Foundation.[71]

Calls for specific cancer care nurses

5.63Some inquiry participants advocated for more cancer-specific nurses, including specialist pancreatic cancer nurses,[72] upper gastrointestinal cancer nurses;[73] neuroendocrine tumour (NET) nurses;[74] and DIPG nurses.[75]

5.64For instance, Yvonne, who outlined her story following her child’s diagnosis of an aggressive paediatric bone cancer, Ewing Sarcoma, at the age of 17, outlined the advantages of ‘condition specific’ nurses:

Condition specific Clinical Nurse Coordinators are a wonderful resource as they are easy to approach/contact and they have time assigned to problem solve, often saving money and time and optimising care. There is a risk in relying on charities to fill existing gaps in support.[76]

DIPG and paediatric cancer nurses

5.65Some inquiry participants whose children were affected by the rare and aggressive childhood cancer, DIPG, emphasised the need for DIPG nurse navigators.[77] Alan, whose daughter Madeline was diagnosed with DIPG at age six in November 2023, submitted:

…the absence of a DIPG nurse navigator further hinders families in accessing comprehensive guidance and assistance throughout their journey, leaving them feeling lost and overwhelmed amidst the complexities of the disease.[78]

5.66More broadly, Professor Matthew Dun, called for all paediatric oncology centres in the country to have a dedicated nurse available to assist children and their families:

It is our firm belief that every paediatric oncology treatment centre in Australia should have a dedicated nurse to assist children and their families in navigating the hardest of all journeys. This essential support should ideally be a standard part of the healthcare system and supported by government.[79]

Specialised neuroendocrine tumour nurses

5.67Robert, who is battling neuroendocrine cancer, amongst several other members of his family, passionately advocated for government funding for a dedicated NET nurse in Tasmania.[80] He considered that having access to a NET nurse ‘would alleviate the anxiety associated with navigating the healthcare system and constant rotation of healthcare professionals’.[81]

5.68Robert also expressed frustration about the inequitable availability of cancer care nurses throughout Australia:

In Tasmania, through McGrath Foundation funding, breast cancer patients have one nurse for every 100 patients. We had over 100 patients diagnosed with NETs in 2023. As well as newly diagnosed patients, it is estimated we have 500 patients living with NETs in Tassie. If all were equal, we should have five NET nurses in Tasmania. I only asked the government for one.[82]

5.69NeuroEndocrine Cancer Australia similarly advocated for wider availability of specialised NET nurses in Australia.[83] It considered there is ‘a huge inequity in accessing support services for Australian NET patients and their families when compared to the majority of other cancer patients’.[84]

5.70NeuroEndocrine Cancer Australia outlined that currently, the only support available to the approximately 24 000 Australians affected by neuroendocrine tumours, is the one full-time specialist NET nurse, which is funded through NeuroEndocrine Cancer Australia via donations.[85]

5.71Ms Meredith Cummins, Chief Executive Officer of NeuroEndocrine Cancer Australia, considered this ‘unsustainable and inequitable’ and advocated for at least one NET nurse in each Australian jurisdiction.[86]

5.72NeuroEndocrine Cancer Australia also expressed hesitancy regarding the Australian Cancer Plan’s ‘cancer agnostic’ approach to supportive care. It considered that this model this would not provide sufficiently specialised support to NET patients:

The Australian Cancer Plan recommends cancer “agnostic” navigation in the delivery of supportive care, which is highly likely to not be a nurse navigators. This is not going to be suitable for NET patients as they require high expertise in NETs due to the incredible complexity of their disease and varying treatments... NECA fears that this “navigation” approach will cause more issues than it solves for NET patients, and in the end, patients will still rely on the NECA specialist service...[87]

The role of general practitioners after diagnosis

5.73Some inquiry participants highlighted that general practitioners (GPs) play an important role in supporting rare and less common cancer patients after their diagnosis.[88] For instance, Lesley, who has been managing recurrent adrenal cancer for the last 13 years, described how crucial her GP has been in supporting her throughout her cancer journey:

On a very positive note, one other thing I would like to mention that has been incredibly important for me is the supporting role of my GP in overseeing everything medical and looking after me as a person. The importance of having a GP who knows me, who can tell how I am just by looking at me and who understands and is familiar with my complex medical history and circumstances, should not be underestimated. I also have appreciated the respectful and timely collaboration between my GP, oncologist and surgeon and their multidisciplinary team.[89]

5.74Professor Mark Morgan, Chair of the Expert Committee for Quality Care at the Royal Australian College of General Practitioners (RACGP) advised that the role of GPs extends beyond the point of the patient’s diagnosis:

I also think that the GP role doesn't end with diagnosis and referral. I think the management of ongoing risk factors and chronic diseases, supporting a patient and their carers, and managing and helping people through survivorship or end-of-life care all fall to general practice. I think there's a lot more that can be done for rare cancers on those sides after the diagnosis.[90]

5.75The RACGP flagged that cancer care and coordination requires ‘complex discussions’ and a shared decision-making approach with patients of varying levels of health literacy – particularly if patients have a rare cancer where other supports are lacking.[91]

5.76The RACGP noted that this work is currently unfunded, despite its complexities, with consultations often involving a multidisciplinary team and including:

discussion of the potential benefits and harms of treatments;

management of other complex chronic conditions for people with a rare cancer diagnosis;

management of the mental health of the patient, family and carers; and

discussion of Advance Care Directives with the patient, family and carers.[92]

5.77The RACGP also advised that patient care coordination is not funded under current settings. It highlighted that for instance, when GPs receive test results from pathology providers, time is required to review reports, and compare and update screening records. It outlined that for rare cancers, this coordination work requires further research, analysis and liaison with other health professionals involved in the patient’s care.[93]

5.78It stressed that whilst the Medicare Benefits Schedule (MBS) fee-for service structures work well for an individual patient’s face-to-face care, current MBS funding levels ‘reward short, episodic care, rather than long-term management of complex and chronic diseases’.[94]

5.79It specifically called for MBS investment and reforms, and the introduction of ‘blended payment models’ to better support longer, and more complex consultations and collaborative shared care models:

Recommendation 1 – GPs are supported and funded to deliver evidence-based and coordinated care to patients with complex health issues and shared-care models are supported.[95]

The need for further psychological supports

5.80Several witnesses and submitters explained the significant social, emotional and psychological impacts that a rare cancer diagnosis, and the complex treatment journey thereafter, can have on patients and their families.[96]

5.81Mrs Amanda Robertson, Information and Support Manager at Cancer Council South Australia, described the psychological and social impacts that one of her clients, a woman in her late 40s, experienced following a neuroendocrine tumour diagnosis in 2019:

I can't not mention the emotional toll. As I said, she was very isolated and overwhelmed. There were lots of practical and emotional challenges, which certainly took a toll on her mental health and often strained family relationships, owing to her needing to rely on family members for support.[97]

5.82Jon, who outlined his perspectives and experiences after being diagnosed with a rare form of lung cancer, ALK+, in April 2022, stressed the value of psychological supports to help patients like himself to process the implications of their diagnoses:

Psychological support can not be underestimated with a diagnosis of a rare cancer [like] ALK+ lung cancer… we are still diagnosed with a terminal cancer and are dealing with the psychological implications of his while we are still trying to live our best lives with our families. [This] is a challenging position for anyone to be in. [Psychological] support should be considered standard first line treatment.[98]

5.83Further, Head and Neck Cancer Australia explained that treatments for these cancers, especially in relation to radiation therapy, can have a detrimental effects on quality of life and the psychological wellbeing of patients. It advised that issues such as low self-esteem, changes to intimacy and sexual health impacting mental health and wellbeing, may arise during treatment, or develop later and persist throughout a patient’s life.[99]

5.84Several inquiry participants called for additional investment in psychological, or mental health services to support patients and their loved ones throughout their cancer journey.[100]

5.85The Minderoo Foundation, specifically recommended investment in ‘robust psychosocial support services’ including counselling, support groups and survivorship programs, to effectively address the unique challenges faced by patients with rare cancer diagnoses and their families.[101]

5.86Specific issues to be addressed regarding psychological services are outlined below.

Timeliness of psychological supports

5.87The committee heard of the importance of timely psychological supports for those affected by rare and less common cancers.[102]

5.88For example, Mrs Amanda Robertson, Information and Support Manager at Cancer Council South Australia, emphasised the need for more timely provision of psychological services. She posited ‘one would hope we could intervene earlier to lower those distress levels and not get to the point where someone is desperately unwell’.[103]

5.89Lived experience accounts also emphasised the need for more timely provision of these services.[104] For example, Eleni, whose mother Miro was diagnosed with pancreatic cancer in October 2021, told the committee that the offer of psychological support came far too late in her mother’s cancer journey:

During Mum’s short time in [hospital], she became more and more medicated in an effort to manage the pain. During this time, she became more and more distant, drowsy and eventually got to the point where she struggled to stay awake or communicate, as her body rapidly shut down. It wasn’t until this point that we were first offered the support of a psychologist or counsellor, but it was far too late by this stage. I wish Mum had this support earlier, when she was still lucid, to help her work through the thoughts, emotions and fear of knowing she would ultimately lose her life to cancer and leave her family behind.[105]

Dedicated psychological supports for children and young people

5.90The committee also heard specific calls for more psychosocial supports to support children and young people affected by rare and less common cancer.[106]

5.91Jelena, whose youngest son Marko was diagnosed with neuroblastoma when he was 16 months old, outlined the need for such services:

Also, with rare cancers, I think investing in psychosocial support is extremely important, especially in childhood cancers. As an adult, you kind of have those coping mechanisms. Children have their whole lives ahead of them. Even though he's feeling okay now, we don't know what the long‑term effects of his treatment are going to be, and, now that the treatment is done, we are left to our own devices.[107]

5.92Similarly, Yvonne advocated for the provision of psychological support for children, adolescents and young adults, and their families when they are diagnosed with a rare disease or cancer, within the first week of diagnosis.[108]

5.93The department advised the Australian Government has recently launched the ‘Cancer Hub’, a digital platform providing immediate online, consolidated, and tailored cancer navigation, counselling and support service for people under 25years and their parents. According to the department, this initiative will help over 70 000 Australians navigate the cancer journey and a further 20 000 with mental health support.[109]

5.94The department also outlined that the government has supported Canteen Australia to establish and deliver the Youth Cancer Service program for young people with cancer. It further detailed:

This provides patients with services, social and emotional support, access to clinical trials and developing and implementing national and local strategies to support the delivery of high-quality youth cancer services. The Government provided Canteen $22.0 million over four years from 2020-21 to support this activity, which is available to all young people with cancer.[110]

Bereavement care

5.95Evidence to the committee also highlighted the importance of bereavement care and supports following the death of a patient.[111]

5.96Evidence provided by the Pancare Foundation highlighted the ‘sad reality’ that many patients diagnosed with pancreatic cancer will pass away from this disease, which leaves loved ones grappling with their loss and in need of bereavement support:

Furthermore, with five-year survival rates less than 35 per cent, the sad reality is that 65 percent of patients will be lost within five years of diagnosis (absent developments in treatment). It follows that many carers and family members will deal with the loss of their loved ones, and therefore, bereavement and available social support are critical for carers.[112]

5.97Ms Lucy Jones, Chief Executive Officer of Neuroblastoma Australia, echoed these sentiments at a public hearing, where she described the lack of bereavement supports available to families affected by neuroblastoma. Ms Jones noted that a neuroblastoma diagnosis results in the ‘death of the child in 50 per cent of cases’, and that families are expected to ‘get back, in theory, to the real world with very little support’.[113] She appealed for government to fund additional supports for these families:

It really would be recommended for the government to fund more support in hospitals and afterwards, after the actual treatment journey has finished, because the overall journey certainly hasn't.[114]

5.98Kate, whose young niece Emily, passed away following complications after undergoing treatment for neuroblastoma, also noted the lack of bereavement supports that were extended to her and her family following Emily’s passing:

Emily would have started prep last week. My mum, Emily's grandmother, had to call St Benedict's to tell them that Emily died and that we needed to unenrol her. Emily died cancer free. In the months that followed, we received one follow-up phone call from Emily's oncologist. We never heard from bereavement services. We found out via Facebook that, every year, our hospital holds a memorial service for children who have died. We did not know about the service, and Emily was not included. When we asked why, we were simply told that Emily's social worker had moved on, and her paperwork had been lost in the system. Because Emily died on a Thursday afternoon, and her social worker finished early on Friday, I had to call White Lady to organise the transfer of Emily's body from the hospital morgue to the funeral home.[115]

Palliative care services

5.99The committee heard of the importance of palliative care in providing support to patients diagnosed with rare and less common cancers, including neuroendocrine cancer.[116]

5.100Queensland Health noted that whilst cancer remains one of the leading causes of death across all ages, the availability of timely and equitable access to palliative care is essential.[117] Further, it explained:

Palliative care is ‘person and family-centred care provided for a person with an active, progressive, advanced disease, who has little or no prospect of cure and who is expected to die, and for whom the primary goal is to optimise the quality of life’. Palliative care treats physical, emotional, spiritual, or social symptoms because of a condition or disease.[118]

5.101Queensland Health informed the committee that a patient may enter and exit palliative care throughout their cancer journey, particularly if their prognosis is years from their diagnosis.[119]

5.102Some submitters flagged that palliative care is not always provided appropriately, or early enough during a patient’s cancer journey. For example, Mrs Hannah Pringle, mother of Ruby who passed away in March 2023 following a battle with DIPG, outlined issues that Ruby experienced in the delivery end of life care:

Even in Ruby's death, she was unable to access the critical medication to comfort her in her passing. The palliative care institute ran out of medication they were administrating via a continuous pump. For four hours Ruby was actively dying without the adequate medication. An on-call doctor was called out of hours to write a script. The medication then had to be retrieved from off site. This resulted in further suffering for Ruby and ingrained memories of the sound of her death rattle for four hours that was not needed.[120]

5.103The Pancare Foundation submitted that access to supportive and palliative care services is ‘limited, late and varied across Australia’.[121] It also noted that patients living with upper gastrointestinal cancers are only referred when they are actively deteriorating, it continued:

…the median time before death at which a patient access palliative care is about 20 days. In this sense, palliative care services are underutilised in Australia.[122]

5.104Similarly, Ms Angie Sari-Daher, whose daughter, Eve, was diagnosed with DIPG, told the committee that ‘palliative care services offer limited supports until the child is actively dying’ for DIPG families.[123]

5.105Queensland Health explained that there are many reasons as to why palliative care may not be discussed with the patient or their loved ones at the time of diagnosis. It explained that reasons for this could include:

that clinicians and patients alike are unaware that palliative care ‘is more than just making a patient comfortable at end-of-life’;

a lack of knowledge of palliative care supports and services;

a lack of knowledge or recognition of what palliative care can offer; and

a lack of regional, rural and remote palliative care services.[124]

The importance of culturally safe palliative care for First Nations people

5.106The committee heard that First Nations individuals and communities do not have access to culturally safe palliation services, despite their disproportionally high cancer mortality rates.[125]

5.107NACCHO outlined that there is a need for palliative care services for First Nations people in residential aged care and hospital settings that accommodate cultural needs, which could include supporting the patient to return to country.[126]

5.108To achieve this, NACCHO recommended provided funding to the ACCHO sector so that they can provide holistic and culturally safe palliation and end-of-life services, stressing that there is a significant need for investment so that First Nations people can ‘die with dignity’.[127]

Committee view

5.109The committee was moved by the multitude of lived experience accounts which outlined the devastating and life-changing impacts that a rare or less common cancer diagnosis can have on Australian individuals, their loved ones, and their communities.

5.110The committee notes that beyond the significant physical, social and psychological tolls that a such a diagnosis can have on individuals, these factors are often compounded by further cancer navigation and coordination challenges such as navigating the complex health system, making difficult decisions about treatment and care, and juggling numerous medical appointments.

5.111This evidence made clear that there is an overwhelming need for increased and improved, patient-centred, supportive care and survivorship services for Australians with rare and less common cancers.

Funding for support services and information

5.112The committee is aware that there are many generous, innovative, and hard-working non-government organisations, charities and lived experience advocates in the community which work to fill these crucial support gaps for those affected by rare cancers. However, the committee considers that Australians should not be forced to rely upon the goodwill or fundraising capacity of other Australians or charities to ensure the ongoing provision of such essential supports.

5.113The committee believes that if the Commonwealth is not providing these essential supports itself, then it must play a larger role in ensuring cancer advocacy and other relevant community organisations have sufficient and secure funding to keep up with the demand for supports. The committee considers it crucial that community organisations are supported to continue delivering services such as helplines and providing other rare cancer information and guidance materials, for their clients and patient groups, long into the future.

5.114The committee recommends that the Australian Government provide appropriate funding to key cancer advocacy organisations supporting patients with rare and less common cancers by providing informative resources and support services that:

increase health literacy;

empower patients to make informed decisions regarding their health; and

are culturally appropriate and accessible in a variety of languages.

5.115Further, whilst the committee welcomes the Australian Cancer Plan’s ambitions in relation to the provision of supportive care, it reemphasises that to achieve equity in cancer care, sufficient focus, attention and resources must also be provided to deliver on these for rare and less common cancers.

5.116The committee recommends that the Australian Government provide sufficient funding and resources to ensure that the supportive care aspirations of the Australian Cancer Plan are delivered on for all Australians, including for those affected by rare and less common cancers.

Cancer care nurses

5.117The committee heard a substantive amount of evidence which outlined the need for further investment in, and provision of cancer care nurses across Australia.

5.118The committee was encouraged to hear that the Australian Government has recently committed to establishing the ‘all-cancer nurse service’ which strives to provide approximately 250 Commonwealth funded all-cancer care nurses by 2027, to provide a similar level of service across the country, no matter what type of tumour patients have.

5.119However, the committee notes there was some hesitancy amongst inquiry participants about the ‘cancer-agnostic’ nature of this service, with some calling for the provision of cancer-specific nurses.

5.120The committee is of the strong view that the government’s all-cancer nurse service will be effective in providing additional, much needed supports for rare and less common cancer patients and it looks forward to monitoring the roll out of these nurses in the community in the coming years. However, the committee recognises the additional need for dedicated paediatric cancer and neuroendocrine tumour nurses, noting the complex and unique characteristics of these cancers and these patients.

5.121The committee recommends that the Department of Health and Aged Care monitor and report on progress for the delivery of the all-cancer nurse service.

5.122The committee recommends that the Australian Government explore the provision of at least one specialised neuroendocrine tumour nurse, and paediatric cancer nurse, in each Australian jurisdiction.

General practitioners

5.123The committee is aware of the important role that general practitioners (GPs) continue to play in supporting rare and less common cancer patients, far beyond the point of diagnosis, or their referral to other specialist services.

5.124The committee understands that GPs provide crucial supports such as patient care coordination, providing advice regarding the potential benefits and harms of treatments, managing comorbidities and risk factors, and helping people navigate survivorship or end-of-life care.

5.125However, the committee notes evidence which highlighted that current Medicare Benefits Schedule (MBS) settings do not sufficiently remunerate or incentivise GPs to provide this more complex, intensive care and coordination support, which is often required for patients affected by rare and less common cancers, or other rare diseases.

5.126Noting the substantive amount of evidence received from patients and families affected by rare and less common cancers which observed the overall lack of supportive care following diagnosis, the committee believes that there is an opportunity to ensure that GPs are better enabled to fill these critical support gaps.

5.127The committee recommends that the Australian Government ensure that general practitioners are appropriately incentivised and remunerated for patient care coordination and longer-term management of complex and chronic diseases, including rare and less common cancers.

Psychological services

5.128The committee heard that additional, more affordable, and more timely psychological services are needed to adequately support rare and less common cancer patients and their loved ones, through this incredibly challenging time.

5.129The committee also notes particular calls for dedicated psychological supports for children and young people affected by these cancers, as well as the need for improved and increased bereavement services.

5.130The committee recommends that the Australian Government consider further investment to ensure the timely and affordable provision of psychological services to support patients and their families acutely impacted by rare and less common cancers.

Palliative care

5.131The committee heard that palliative care is an essential form of support for several Australians affected by rare and less common cancers, including neuroendocrine cancer.

5.132However, the committee was concerned to hear that too often, palliation services are not always provided in a timely manner, and that patients, families and medical professions alike can misunderstand, or lack awareness of the purpose of these services. The committee was also alarmed to learn about the inequities in access to palliation services across the country, particularly in rural and remote regions.

5.133There is a need for more timely, equitable and appropriate access to palliation services for rare and less common cancer patients. Particular consideration should also be given to the provision of culturally safe and appropriate palliative care for First Nations people and communities.

5.134The committee recommends that the Australian Government work with state and territory governments, and palliative care services to support:

improved understanding amongst patients, families and clinicians of the potential benefits, and timely delivery of palliative care;

increased awareness that palliative care is not just an end‑of-life service;

increased availability of tailored and appropriate palliative care services, for a range of population groups; and

where appropriate, greater dialogue upon diagnosis, or throughout treatment, between patients, families and clinicians on palliative care options.

Footnotes

[1]See, for example, Michelle, Private capacity, Committee Hansard, 31 January 2024, pp. 43 and 44; Katherine, Private capacity, Committee Hansard, 1 February 2024, p. 31; Jelena, Private capacity, Committee Hansard, 1 February 2024, pp. 29 and 30; Kristina, Private capacity, Committee Hansard, 1 February 2024, p. 35; Jacqui, Private capacity, Committee Hansard, 20 February 2024, p. 19; Ms Angie Sari-Daher, Australian DIPG Families, Committee Hansard, 31 January 2024, pp. 34 and 35; Movember Foundation, Submission 40, [pp. 2 and 3]; Eleni, Submission 126, [pp. 1 and 2]; Sandra, Submission 84, p. 2; Kate, Private capacity, Committee Hansard, 31 January 2024, pp. 40 and 41; Alison, Submission 90, [p. 1]; Mrs Amanda Robertson, Information and Support Manager, Cancer Council South Australia, Committee Hansard, 9 April 2024, p. 1; Associate Professor Gabrielle Cehic AM, Submission 140, [p. 1]; Glen, Submission 101, p. 1; Lesley, Private capacity, Committee Hansard, 21 February 2024, p. 27; Jon, Submission 67, [p. 1]; Professor Matthew Dun, Professor of Paediatric Haematology and Oncology Research, Founder and Director of RUN DIPG, Committee Hansard, 31 January 2024, p. 29.

[2]Emily, Private capacity, Committee Hansard, 1 February 2024, p. 28.

[3]Milton, Submission 80, [pp. 1 and 2].

[4]Mrs Beau Kemp, Australian DIPG Families, Committee Hansard, 31 January 2024, p. 37.

[5]See, for example, Milton,Submission 80, [p. 1]; Sandra, Submission 84, p. 5; Professor Matthew Dun, Professor of Paediatric Haematology and Oncology Research, Founder and Director of RUN DIPG, Committee Hansard, 31 January 2024, p. 31; Mrs Hannah Pringle, Australian DIPG Families, Committee Hansard, 31 January 2024, pp. 36 and 37; Mrs Beau Kemp, Australian DIPG Families, Committee Hansard, 31 January 2024, p. 38; Judi, Submission 116, [pp. 8–10]; Kate, Private capacity, Committee Hansard, 31 January 2024, p. 42; Michelle, Private capacity, Committee Hansard, 31 January 2024, pp. 42 and 44; Katherine, Private capacity, Committee Hansard, 1 February 2024, p. 32; Michael, Private capacity, Committee Hansard, 1 February 2024, p. 34; Robert, Private capacity, Committee Hansard, 20 February 2024, p. 25; Lesley, Private capacity, Committee Hansard, 20 February 2024, pp.27 and 28; Dr Richard Stuckey, Submission 97, p. 5; Associate Professor Kathy Tucker, Private capacity, Committee Hansard, 31 January 2024, p. 55; Associate Professor Grace Kong, Medical Consultant, Nuclear Medicine Physician and Co-Chair, Neuroendocrine Tumour Unit, Peter MacCallum Cancer Centre, Committee Hansard, 1 February 2024, pp. 1 and 2; Mr Doug Hawkins, Chief Executive Officer, Pancare Foundation, Committee Hansard, 1 February 2024, p. 57; Associate Professor Anna Boltong,Chief Executive Officer, Ovarian Cancer Australia, Committee Hansard, 1February 2024, p. 58; Minderoo Foundation, Submission 23, p. 3. Citations omitted; Rare Cancers Australia, Submission 3, [pp. 7 and 8]; Queensland Health, Submission 12, pp. 14 and 15; Melanoma Patients Australia, Submission 22, p. 5; Leona, Submission 65, [p. 1]; Christopher, Submission 73, [p.1]; Jelena, Private capacity, Committee Hansard, 1 February 2024, p. 30.

[6]Minderoo Foundation, Submission 23, p. 3. Citations omitted.

[7]Minderoo Foundation, Submission 23, p. 2. Citations omitted.

[8]Dr Minmin Li FRACP and Associate Professor Kathy Tucker AO FRACP, Submission 36, p. 2.

[9]Glen, Submission 101, p. 1; Glen, Private capacity, Committee Hansard, 20 February 2024, p. 20.

[10]Judi, Submission 116, [p. 9].

[11]See, for example, Mrs Hannah Pringle, Australian DIPG Families, Committee Hansard, 31 January 2024, p. 36; Milton, Submission 80, [p. 1]; Megan, Submission 107, pp. 3 and 4; Mrs Amanda Robertson, Information and Support Manager, Cancer Council South Australia, Committee Hansard, 9 April 2024, pp. 1 and 2; Danielle, Submission 109, p. 2; Rare Cancers Australia, Submission 3, [pp. 7 and 8]; MrOwen Smith, Managing Director, Bristol-Myers Squibb Australia, Committee Hansard, 1February 2024, p. 67; Roche, Submission 9, p. 19; Bristol Myers Squibb Australia, Submission 46, p.6.

[12]Robert, Private capacity, Committee Hansard, 20 February 2024, p. 26.

[13]Michelle, Private capacity, Committee Hansard, 31 January 2024, p. 42.

[14]Kate, Private capacity, Committee Hansard, 31 January 2024, p. 42.

[15]See, for example, NeuroEndocrine Cancer Australia, Submission 38, p. 5; Roche, Submission 9, p. 19; Mrs Hannah Pringle, Australian DIPG Families, Committee Hansard, 31 January 2024, p. 36.

[16]Victorian Department of Health, Supportive cancer care, 15 June 2023, www.health.vic.gov.au/health-strategies/supportive-care (accessed 22 April 2024).

[17]See, for example, Pancare Foundation, Submission 21, p. 12; Leukaemia Foundation, Submission 39, pp. 19 and 20; Melanoma Patients Australia, Submission 22, [pp. 8, 11 and 15]; Cancer Council Australia, the Cancer Nurses Society of Australia, the Clinical Oncology Society of Australia, Private Cancer Physicians of Australia, the Medical Oncology Group of Australia and the Lung Foundation Australia, Submission 4, p. 9; Head and Neck Cancer Australia, Submission 19, p. 4; Pankind, the Australian Pancreatic Cancer Foundation, Submission 20, p. 2; Pancare Foundation, Submission 21, [pp. 3, 4 and 12]; Cancer Australia, Submission 42, p. 10; Leukaemia Foundation, Submission 39, p.19.

[18]Cancer Australia, Submission 42, p. 10.

[19]The Daffodil Centre and the University of Sydney Cancer Research Network, Submission 32, p. 14.

[20]Cancer Council Australia, the Cancer Nurses Society of Australia, the Clinical Oncology Society of Australia, Private Cancer Physicians of Australia, the Medical Oncology Group of Australia and the Lung Foundation Australia, Submission 4, p. 9. Citation omitted.

[21]Department of Health and Aged Care, Submission 1, p. 12.

[22]Dr Matthew Magarey, Board Director, Head and Neck Cancer Australia, Committee Hansard, 31 January 2024, p. 19.

[23]Caitlin, Submission 111, [p. 1].

[24]See, for example, Rare Cancers Australia, Submission 3, p. 8; Ovarian Cancer Australia, Submission 18, [p. 1]; Head and Neck Cancer, Submission 19, pp. 1, 4–5; PanKind, the Australian Pancreatic Cancer Foundation, Submission 20, p. 1; Pancare Foundation, Submission 21, [p. 2]; NeuroEndocrine Cancer Australia, Submission 38, pp. 1–2; Leukaemia Foundation, Submission 39, p. 2; Neuroblastoma Australia, Submission 58, [p. 1]; WMozzies, Submission 119; [p. 1]; Cancer Council Australia, the Cancer Nurses Society of Australia, the Clinical Oncology Society of Australia, Private Cancer Physicians of Australia, the Medical Oncology Group of Australia and the Lung Foundation Australia, Submission 4, p. 9.

[25]National Aboriginal Community Controlled Health Organisation (NACCHO), Submission 48, pp.10 and 13.

[26]See, for example, Department of Health and Aged Care, Submission 1, pp. 13–14; WA Health, Submission 11, p. 5; Queensland Health, Submission 12, pp. 16–17.

[27]See, for example, Megan, Submission 107, p. 4; Yvonne, Submission 100, [p. 4]; Melanoma Patients Australia, Submission 22, p. 5; Ron, Submission 110, [p. 4]; Megan, Submission 128, [p. 3]; Mrs Emma Phillips, Executive Director, Can Assist (Cancer Assistance Network), Committee Hansard, 31January 2024, p. 25; Professor Matthew Dun, Professor of Paediatric Haematology and Oncology Research, Founder and Director of RUN DIPG, Committee Hansard, 31 January 2024, p. 31; Judi, Private capacity, Committee Hansard, 20 February 2024, pp. 28–29; Mrs Patricia Marjorie O’Hara OAM, Committee Member, Rotary Outreach Myeloma Program, Rotary Club of Camberwell, Committee Hansard, 1 February 2024, p. 14.

[28]See, for example, Dr Ian Kamerman, Secretary, Rural Doctors Association NSW, Committee Hansard, 1 March 2024, p. 23; David, Submission 105, p. 2; Michael, Private capacity, Committee Hansard, 1February 2024, pp. 34–35; The Larykins, About,https://larykins.com.au/about/ (accessed 22 April 2024); Megan, Submission 128, [p. 3]; Milton, Submission 80, [p. 1]; Lesley, Private capacity, Committee Hansard, 20 February 2024, p. 27; Cure Our Ovarian Cancer, Submission 114, p. 1; WMozzies, Submission 119, [p. 1]; Claudia, Submission 81, [p. 3].

[29]Judi, Private capacity, Committee Hansard, 20 February 2024, pp. 28–29.

[30]Megan, Submission 107, p. 4.

[31]Queensland Health, Submission 12, p. 14.

[32]Rare Cancers Australia, Submission 3, [p. 7].

[33]NACCHO, Submission 48, p. 10.

[34]NACCHO, Submission 48, p. 16.

[35]NACCHO, Submission 48, p. 16.

[36]NACCHO, Submission 48, p. 16.

[37]See, for example, Department of Health and Aged Care, Submission 1, pp. 12–14; WA Health, Submission 11, p. 6; Queensland Health, Submission 12, pp. 15–17.

[38]Department of Health and Aged Care, Submission 1, pp. 12 and 13.

[39]Department of Health and Aged Care, Submission 1, pp. 13 and 14.

[40]Department of Health and Aged Care, Submission 1, p. 14.

[41]Cancer Australia, Australian Cancer Plan, Strategic Objective 2: Enhanced Consumer Experience,www.australiancancerplan.gov.au/so/enhanced-consumer-experience (accessed 22 April 2024).

[42]Cancer Australia, Submission 43, p. 9.

[43]Cancer Australia, Australian Cancer Plan, Strategic Objective 2: Enhanced Consumer Experience,www.australiancancerplan.gov.au/so/enhanced-consumer-experience (accessed 22 April 2024).

[44]Cancer Council Australia, the Cancer Nurses Society of Australia, the Clinical Oncology Society of Australia, Private Cancer Physicians of Australia, the Medical Oncology Group of Australia and the Lung Foundation Australia, Submission 4, p. 9.

[45]Cancer Council Australia, the Cancer Nurses Society of Australia, the Clinical Oncology Society of Australia, Private Cancer Physicians of Australia, the Medical Oncology Group of Australia and the Lung Foundation Australia, Submission 4, p. 9.

[46]See, for example, Judi, Submission 116, [p. 9]; Ms Sharon Winton, Chief Executive Officer, Lymphoma Australia, Committee Hansard, 1 February 2024, pp. 15 and 16; Movember Foundation, Submission 40, p. 5, Katherine, Private capacity, Committee Hansard, 1 February 2024, p. 31; RareCancers Australia, Submission 3, [pp. 7 and 8]; Lesley, Private capacity, Committee Hansard, 21February 2024, p. 27; Head and Neck Cancer Australia, Submission 19, p. 3; Leona, Submission 65, [p. 1]; Claudia, Submission 81, [p. 3].

[47]Rare Cancers Australia, Submission 3, [p. 7].

[48]Rare Cancers Australia, Submission 3, [p. 7].

[49]Judi, Submission 116, [p. 9].

[50]Milton, Submission 80, [p. 1].

[51]Department of Health and Aged Care, Submission 1, pp. 12 and 13.

[52]Mrs Ariane Hermann, Acting First Assistant Secretary, Department of Health and Aged Care, Committee Hansard, 1 March 2024, pp. 28 and 29.

[53]Department of Health and Aged Care, Submission 1, p. 13.

[54]See, for example, Head and Neck Cancer Australia, Submission 19, p. 4; PanKind, The Australian Pancreatic Cancer Foundation, Submission 20, p. 1; Pancare Foundation, Submission 21, [p. 2]; Leukemia Foundation, Submission 39, [p. 2]; Movember Foundation, Submission 40, pp. 4–5.

[55]See, for example, Head and Neck Cancer Australia, Submission 19, p. 4; Melanoma Patients Australia, Submission 22, p. 4; Rare Cancers Australia, Submission 3, [p. 8].

[56]Rare Cancers Australia, Submission 3, [p. 7].

[57]Rare Cancers Australia, Submission 3, [p. 8].

[58]See, for example, Anita, Submission 135, [p. 1]; Ms Meredith Cummins, Chief Executive Officer, NeuroEndocrine Cancer Australia, Committee Hansard, 1 February 2024, pp. 2, 7 and 8; Mrs Kate Wakelin, Neuroendocrine Tumour Clinical Nurse Consultant, Peter MacCallum Cancer Centre, Committee Hansard, 1 February 2024, p. 8; Mrs Patricia Marjorie O’Hara OAM, Committee Member, Rotary Outreach Myeloma Program, Rotary Club of Camberwell, Committee Hansard, 1 February 2024, p. 14; Associate Professor Anna Boltong, Chief Executive Officer, Ovarian Cancer Australia, Committee Hansard, 1 February 2024, p. 60; Mrs Bridget Bradhurst, Acting Chief of Support and Advocacy, Ovarian Cancer Australia, Committee Hansard, 1 February 2024, p. 60; Professor Matthew Dun, Professor of Paediatric Haematology and Oncology Research, Founder and Director of RUN DIPG, Committee Hansard, 31 January 2024, p. 31; Dr Melanie Wuttke, Head of Medical Oncology, Royal Hobart Hospital, Committee Hansard, 20 February 2024, pp. 7 and 12; Mrs Amanda Robertson, Information and Support Manager, Cancer Council South Australia, Committee Hansard, 9 April 2024, p. 5; Dr Wei-Sen Lam, Medical Lead, Teletrials, WA Country Health Service, Committee Hansard, 1 March 2024, p. 13; Associate Professor Gabrielle Checic AM, Clinical Lead, South Australian Peptide Receptor Radionuclide Therapy Service, and Chair, South Australian Gastroenteropancreatic Neuroendocrine Tumours Multidisciplinary Team, South Australia Medical Imaging, Committee Hansard, 9 April 2024, p. 26; Yvonne, Submission 100, [p. 4]; Caitlin, Submission 111, [p. 1].

[59]Dr Melanie Wuttke, Head of Medical Oncology, Royal Hobart Hospital, Committee Hansard, 20February 2024, p. 12; Dr Thomas Walwyn, Staff Specialist, Paediatric, Adolescent and Young Adult Oncology, Royal Hobart Hospital, Committee Hansard, 20 February 2024, p. 12.

[60]Dr Anna Johnston, Director of Clinical Haematology, Royal Hobart Hospital, Committee Hansard, 21 February 2024, p. 12; Dr Melanie Wuttke, Head of Medical Oncology, Royal Hobart Hospital, Committee Hansard, 20 February 2024, pp. 12 and 13; Dr Thomas Walwyn, Staff Specialist, Paediatric, Adolescent and Young Adult Oncology, Royal Hobart Hospital, Committee Hansard, 20 February 2024, p. 12.

[61]Anita, Submission 135, [p. 1].

[62]See, for example, Yvonne, Submission 100, [p. 4]; WMozzies, Submission 119, p. 2; Glen, Private capacity, Committee Hansard, 20 February 2024, p. 20; Robert, Private capacity, Committee Hansard, 20 February 2024, p. 25; Caitlin, Submission 111, [p. 1]; David, Submission 105, p. 2; Claudia, Submission 81, [p. 4]; Ms Angie Sari-Daher, Australian DIPG Families, Committee Hansard, 31January 2024, p.33; Mrs Beau Kemp, Australian DIPG Families, Committee Hansard, 31 January 2024, p. 38.

[63]Ipsen, Submission 30, pp. 4 and 5; Bristol Myers Squibb Australia, Submission 46, p. 6; Novartis, Submission 52, pp. 5 and 6.

[64]Novartis, Submission 52, pp. 5 and 6. Citations omitted.

[65]See, for example, Dr Melanie Wuttke, Head of Medical Oncology, Royal Hobart Hospital, Committee Hansard, 20 February 2024, pp. 7 and 12; National Rural Health Association, Submission 7, p. 8; Associate Professor Gabrielle Checic AM, Clinical Lead, South Australian Peptide Receptor Radionuclide Therapy Service, and Chair, South Australian Gastroenteropancreatic Neuroendocrine Tumours Multidisciplinary Team, South Australia Medical Imaging, Committee Hansard, 9 April 2024, p. 26; Robert, Private capacity, Committee Hansard, 20 February 2024, p. 25; Pancare Foundation, Submission 21, Attachment 1, p. 181; Caitlin, Submission 111, [p. 1].

[66]National Rural Health Association, Submission 7, p. 8.

[67]Caitlin, Submission 111, [p. 1].

[68]Mrs Arianne Hermann, Acting First Assistant Secretary, Department of Health and Aged Care, Committee Hansard, 1 March 2024, pp. 27 and 28.

[69]Mrs Arianne Hermann, Acting First Assistant Secretary, Department of Health and Aged Care, Committee Hansard, 1 March 2024, p. 28.

[70]The Hon Mark Butler MP, Minister for Health and Aged Care, ‘Biggest investment in cancer nurses on record’, Media Release, 17 November 2023.

[71]The Hon Mark Butler MP, Minister for Health and Aged Care, ‘Biggest investment in cancer nurses on record’, Media Release, 17 November 2023.

[72]Claudia, Submission 81, [p. 4].

[73]Pancare Foundation, Submission 21, Attachment 1, pp. 141, 176, 181, and 182.

[74]See, for example, Ms Meredith Cummins, Chief Executive Officer, NeuroEndocrine Cancer Australia, Committee Hansard, 1 February 2024, p. 2; Robert, Private capacity, Committee Hansard, 20February 2024, p. 25; NeuroEndocrine Cancer Australia, Submission 38, pp. 14 and 15; Ipsen, Submission 30, [p. 5]; Associate Professor Gabrielle Cehic AM, Clinical Lead, South Australian Peptide Receptor Radionuclide Therapy Service, and Chair, South Australian Gastroenteropancreatic Neuroendocrine Tumours Multidisciplinary Team, South Australia Medical Imaging, Committee Hansard, 9 April 2024, p. 26; Associate Professor Grace Kong, Medical Consultant, Nuclear Medicine Physician and Co-Chair, Neuroendocrine Tumour Unit, Peter MacCallum Cancer Centre, Committee Hansard, 1 February 2024, p. 1.

[75]See, for example, Ms Angie Sari-Daher, Australian DIPG Families, Committee Hansard, 31 January 2024, p.33; Mrs Beau Kemp, Australian DIPG Families, Committee Hansard, 31 January 2024, p. 38; Alan, Submission 137, p. 3.

[76]Yvonne, Submission 100, [p. 4].

[77]See, for example, Alan, Submission 137, p. 3; Ms Angie Sari-Daher, Australian DIPG Families, Committee Hansard, 31 January 2024, p.33; Mrs Beau Kemp, Australian DIPG Families, Committee Hansard, 31 January 2024, p. 38,

[78]Alan, Submission 137, p. 3.

[79]Professor Matthew Dun, Professor of Paediatric Haematology and Oncology Research, Founder and Director of RUN DIPG, Committee Hansard, 31 January 2024, p. 31.

[80]Robert, Private capacity, Committee Hansard, 20 February 2024, pp. 24–26.

[81]Robert, Private capacity, Committee Hansard, 20 February 2024, p. 26.

[82]Robert, Private capacity, Committee Hansard, 20 February 2024, pp. 24.

[83]Ms Meredith Cummins Chief Executive Officer, NeuroEndocrine Cancer Australia, Committee Hansard, 1 February 2024, pp. 7 and 8.

[84]NeuroEndocrine Cancer Australia, Submission 38, p. 14.

[85]NeuroEndocrine Cancer Australia, Submission 38, p. 14.

[86]Ms Meredith Cummins, Chief Executive Officer, NeuroEndocrine Cancer Australia, Committee Hansard, 1 February 2024, pp. 2, 7 and 8.

[87]NeuroEndocrine Cancer Australia, Submission 38, p. 14.

[88]See, for example, Lesley, Private capacity, Committee Hansard, 20 February 2024, p. 28; Professor Mark Morgan, Chair, Expert Committee for Quality Care, Royal Australian College of General Practitioners (RACGP), Committee Hansard, 1 February 2024, p. 52; Claudia, Submission 81, [p. 4].

[89]Lesley, Private capacity, Committee Hansard, 20 February 2024, p. 28.

[90]Professor Mark Morgan, Chair, Expert Committee for Quality Care, RACGP, Committee Hansard, 1 February 2024, p. 52.

[91]RACGP, Submission 5, p. 7.

[92]RACGP, Submission 5, p. 7.

[93]RACGP, Submission 5, p. 4.

[94]RACGP, Submission 5, p. 4.

[95]RACGP, Submission 5, p. 5.

[96]See, for example, Emily, Private capacity, Committee Hansard, 1 February 2024, p. 28; Mrs Amanda Robertson, Information and Support Manager, Cancer Council South Australia, Committee Hansard, 9 April 2024, p. 2; Head and Neck Cancer Australia, Submission 19, p. 3; Melanoma Patients Australia, Submission 22, pp. 4 and 8; NeuroEndocrine Cancer Australia, Submission 38, pp. 6 and 15; Movember Foundation, Submission 40, p. 2; Alison, Submission 90, [p. 1]; Mrs Bridget Bradhurst, Acting Chief of Support and Advocacy, Ovarian Cancer Australia, Committee Hansard, 1 February 2024, p. 60; Ms Angie Sari-Daher, Australian DIPG Families, Committee Hansard, 31 January 2024, p.34; Jon, Submission 67, [p. 1].

[97]Mrs Amanda Robertson, Information and Support Manager, Cancer Council South Australia, Committee Hansard, 9 April 2024, p. 1.

[98]Jon, Submission 67, [p. 1].

[99]Head and Neck Cancer Australia, Submission 19, p. 3

[100]See, for example, Alison, Submission 90, [p. 1]; Queensland Health, Submission 12, p. 15; NeuroEndocrine Cancer Australia, Submission 38, pp. 15 and 16; Dr Richard Mitchell, Director, Kids Cancer Centre, Sydney Childrens Hospital Randwick, Sydney Childrens Hospitals Network, Committee Hansard, 31 January 2024, p. 52; Associate Professor Kathy Tucker, Private capacity, Committee Hansard, 1 February 2024, p. 55; Mrs Amanda Robertson, Information and Support Manager, Cancer Council South Australia, Committee Hansard, 9 April, p. 2; Christopher, Submission 73, [p. 1].

[101]Minderoo Foundation, Submission 23, pp. 3 and 4.

[102]See, for example, Glen, Submission 101, [p. 1]; Eleni, Submission 126, [p. 2]; Mrs Amanda Robertson, Information and Support Manager, Cancer Council South Australia, Committee Hansard, 9 April 2024, p. 6.

[103]Mrs Amanda Robertson, Information and Support Manager, Cancer Council South Australia, Committee Hansard, 9 April 2024, p. 6.

[104]See, for example, Glen, Submission 101, [p. 1]; Eleni, Submission 126, [p. 2].

[105]Eleni, Submission 126, [p. 2].

[106]See, for example, Dr Richard Mitchell, Director, Kids Cancer Centre, Sydney Childrens Hospital Randwick, Sydney Childrens Hospitals Network, Committee Hansard, 31 January 2024, p. 52; Jelena, Private capacity, Committee Hansard, 1 February 2024, p. 30; Yvonne, Submission 100, [p. 4].

[107]Jelena, Private capacity, Committee Hansard, 1 February 2024, p. 30.

[108]Yvonne, Submission 100, [p. 4].

[109]Department of Health and Aged Care, Submission 1, p. 13.

[110]Department of Health and Aged Care, Submission 1, p. 13.

[111]See, for example, Ms Lucy Jones, Chief Executive Officer, Neuroblastoma Australia, Committee Hansard, 31 January 2024, p. 17; Pancare Foundation, Submission 21, Attachment 1, p. 129; Kate, Private capacity, Committee Hansard, 31 January 2024, p. 41.

[112]Pancare Foundation, Submission 21, Attachment 1, p. 129.

[113]Ms Lucy Jones, Chief Executive Officer, Neuroblastoma Australia, Committee Hansard, 31 January 2024, p. 17.

[114]Ms Lucy Jones, Chief Executive Officer, Neuroblastoma Australia, Committee Hansard, 31 January 2024, p. 17.

[115]Kate, Private capacity, Committee Hansard, 31 January 2024, p. 41.

[116]See, for example, Queensland Health, Submission 12, p. 15; Mrs Hannah Pringle, Australian DIPG Families, Committee Hansard, 31 January 2024, p. 36; Ms Angie Sari-Daher, Australian DIPG Families, Committee Hansard, 31 January 2024, p. 35.

[117]Queensland Health, Submission 12, p. 15.

[118]Queensland Health, Submission 12, p. 15. Citation omitted.

[119]Queensland Health, Submission 12, p. 15.

[120]Mrs Hannah Pringle, Australian DIPG Families, Committee Hansard, 31 January 2024, p. 36.

[121]Pancare Foundation, Submission 21, p. 4.

[122]Pancare Foundation, Submission 21, p. 13.

[123]Ms Angie Sari-Daher, Australian DIPG Families, Committee Hansard, 31 January 2024, p. 35.

[124]Queensland Health, Submission 12, p. 15.

[125]NACCHO, Submission 48, p. 17.

[126]NACCHO, Submission 48, p. 17.

[127]NACCHO, Submission 48, p. 17.