A petition calling for government funding for specialist lung cancer nurses is being been launched today with lung cancer advocates saying that these nurses are crucial to improving outcomes for people diagnosed with Australia’s deadliest cancer.
Led by Lung Foundation Australia, the petition is asking for 15 specialist lung cancer nurses to be funded in this year’s federal budget. Signatures will be collected and presented to the House of Representatives in March 2020.
The petition is officially being launched today from the Melbourne Convention and Exhibition Centre (MCEC) where over 400 health professionals and people affected by lung cancer are gathering for the 2020 Australian Lung Cancer Conference (ALCC).
“Recognising that the Federal Government funds 98 specialist breast, and 62 prostate cancer nurses, and no lung cancer nurses, this petition draws to the attention of the House the disparity in treatment faced by Australians diagnosed with lung cancer,” said Lung Foundation Australia CEO Mark Brooke.
Despite the mounting evidence demonstrating the need for increased workforce capacity, and years of campaigning, Australia has the full time equivalent of just 12 specialist lung cancer nurses to support more than 12,800 people newly diagnosed with lung cancer each year. None of these positions are funded by the federal government, which is in stark contrast to the more than 160 federally funded breast and prostate cancer nurses.
“The critical shortage of specialist lung cancer nurses in Australia is simply unacceptable and it is compromising quality of care,” Mr Brooke said.
“Our lung cancer patients are tired of being treated like second class citizens. They need and deserve the same access to quality care as those diagnosed with any other cancer.”
The primary role of the specialist lung cancer nurse is to support the patient and their family to understand their cancer and treatment options and ensure they receive appropriate and timely initial treatment and co-ordinated and continuous long-term follow-up. They advocate for and ensure patients’ needs and preferences are addressed from pre-diagnosis through to end of life.
Studies have shown that access to specialist cancer nurses increases survival, improves quality of life and reduces hospital admissions. Patients with access to a specialist nurse are 34 per cent more likely to receive treatment.
Cancer Australia’s Clinical Practice Guidelines for the Treatment of Lung Cancer states that best-practice lung cancer treatment and care is delivered by a Multi-disciplinary Team (MDT), of which the specialist lung cancer nurse is cited as a core member.
Lung cancer patient Marilyn Nelson experienced first-hand the difference a lung cancer nurse can make.
“When I was diagnosed with lung cancer in 2013, I thought I would receive the best possible care through private health. I was quite wrong. I didn’t have access to a lung cancer nurse or even a cancer care coordinator. I really needed someone to explain things to me, and to be contactable when I had questions or needed support. My only option was to call my oncologist’s secretary with a question, who would relay the messages to and from my oncologist. It left me feeling quite isolated, unsupported, and distressed.
“I am now treated in public health where there is a Multi-disciplinary Team (MDT) which includes access to a cancer care coordinator and nurses with experience in lung cancer. The difference is very significant. I have access to support when I need it, care is coordinated, questions readily answered. The way it should be,” she said.
Research Fellow in Lung Cancer and ALCC plenary Chair Dr Vanessa Brunelli is undertaking research to develop consistent, critical evidence about the role and core supportive care practices of specialist lung cancer nurses. This evidence will inform future large-scale projects which will implement and evaluate the role of these nurses in the Australian health care system.
Lung Foundation Australia CEO Mr Mark Brooke thanks and congratulates Federal Minister for Health, the Hon Greg Hunt MP, for making important progress to improve outcomes for Australians impacted by lung cancer.
“As we welcome the first screening enquiry and the potential for earlier diagnosis, this further highlights the need for specialist lung cancer nurses to support patients on their journey,” he said.
“The shortage of lung cancer nurses is inconsistent with evidence-based clinical practice guidelines and international best-practice and is in stark contrast to the support provided to other cancer patients. We urge everyone to sign this position to help us call on the government to fund this essential life-changing support for lung cancer patients.”
Sign the petition: https://www.lungfoundation.com.au/petition/
KEY FACTS: LUNG CANCER IN AUSTRALIA
- 12,817 new cases of lung cancer will have been diagnosed in Australia.
- 17 per cent) when compared to the other top five most commonly diagnosed cancers.
- lung cancer scorecard tracks Australia’s progress in areas such as mortality, early diagnosis, screening, specialist nurses and research investment. https://lungfoundation.com.au/wp-content/uploads/2019/10/Information-paper_Blue-print-scorecard.pdf
ABOUT SPECIALIST LUNG CANCER NURSES
- The primary role of the specialist lung cancer nurse is to support the patient and their family to understand their cancer and treatment options and ensure they receive appropriate and timely initial treatment and co-ordinated, continuous long-term follow-up. They advocate for and ensure patients’ needs and preferences are addressed from pre-diagnosis through to end of life.
- The Clinical Practice Guidelines for the Treatment of Lung Cancer, commissioned by Cancer Australia, state that best practice lung cancer treatment and care is delivered by a Multi-disciplinary Team (MDT), of which the specialist lung cancer nurse is cited as a core member. Moreover, the Guidelines state that the specialist lung cancer nurse is the health professional recognised as being the one constant health professional for lung cancer patients across their disease journey.
- The recently released Senate Report into Low Survival Rate Cancers recommends that the Australian government, in conjunction with its state and territory counterparts, works to improve access to specialist cancer care coordinators or nurses for low survival rate cancer patients in every state and territory.
- There are currently 66 Multi-disciplinary Teams across Australia, with 29 lung cancer specialist nurses positioned within these. This situates the delivery of lung cancer care well short of best practice. Most of these 29 nurses are employed in a part-time or half-time capacity, equating to approximately 12 full time equivalent (FTE) positions.
- A study from the UK found the specialist lung cancer nurse annual case load was 122 patients and this was considered ‘overstretched’ compared to specialist breast cancer nurses, where the annual case load was only 79.
QUOTE: Lung Cancer Co ordinator: Helen Westman, North Shore Hospital
“For too long lung cancer patients have been made to feel like they aren’t deserving of the care and support they desperately need. Almost 50 per cent of Australians diagnosed with lung cancer experience anxiety or depression, which is nearly 30 per cent higher than the average of other major cancers. Specialist nurses provide an ongoing point of contact for support and guidance to navigate the complexities of the health system. We coordinate specialist patient care across treatment, psychosocial support and the many road blocks lung cancer patients experience.
“Access to a specialist nurse streamlines the patient pathway resulting in fewer delays to diagnosis and treatment. In breast cancer, specialist nurses are considered the norm and with lung cancer being the biggest cancer killer in Australia isn’t it reasonable to expect the same for lung cancer patients? It’s absolutely essential that the government invest to increase the availability of specialist lung cancer nurses to help patients navigate those roadblocks and ensure they receive the best treatment and care possible.”
NEW RESEARCH: “Hanging on the telephone” – measuring the impact of a telephone-based specialist lung cancer nursing service
To address the gap left by a shortage of specialist lung cancer nurses, Lung Foundation Australia has established the Lung Cancer Support Service, a nurse-led telephone-based intervention to support people living with lung cancer in Australia. This service began in July 2015 with the aim of increasing symptom management, improving self-management and strengthening coping efficacy in Australians diagnosed with lung cancer.
The service provides telephone-based, clinical and psychosocial patient-centred support through an experienced senior clinical oncology nurse. Lung cancer patients, their family members, carers and friends can speak with this nurse by calling Lung Foundation Australia’s Information and Support Centre freecall number to book an appointment. The service is available three days per week during office hours and is funded until June 2020.
Measurement of the impact of the service on lung cancer patients has identified some early trends:
- 62 per cent of patients joining the service reported three or more physical symptoms associated with lung cancer or side effects of their lung cancer treatment. Physical symptoms reported included respiratory, gastrointestinal, nervous system, metabolism and nutrition, skin, or general disorders symptoms.
- 95 per cent of patients reported psychological concerns, with isolation the most frequently reported social concern.
Evidence-based non-pharmacological symptom management is provided to all participants. To date, the phone service has provided 44 discrete referral pathways for psychological support.
The study has identified an overall improvement in coping efficacy in those using the service.
“Coping self-efficacy refers to a person’s perceived ability to cope effectively with life challenges. A cancer diagnosis, treatment for cancer, and issues around surviving cancer are experiences likely to challenge a person’s coping capacity,” explains lead researcher Dr Vanessa Brunelli.
“Patients with higher coping self-efficacy are more likely to engage in effective strategies and demonstrate greater persistence in trying to achieve desired psychosocial and physical outcomes compared to those with lower self-efficacy. Therefore, in patients with higher or improved self-efficacy, improved patient outcomes may include better psychosocial adjustment and quality of life and the experience of fewer and/or less intense physical symptoms and side effects,” she said.