The COVID-19 pandemic has had an unprecedented impact on the health system across Australia, and on people’s access to breast cancer screening, treatment and care.
This has created additional uncertainty and anxiety during already challenging times, particularly for Australians who are undergoing active treatment for breast cancer.
Some of the current challenges include:
Response to COVID-19 impacts
Among our recent advocacy activity includes our involvement with various media outlets in response to BreastScreen NSW’s suspended services. This helped to convey the importance of Australians remaining vigilant about their own health and to contact their GP if they had any symptoms that concerned them.
BCNA’s Director, Policy, Advocacy and Member Services, Vicki Durston, said it was important that people are empowered and supported to be proactive in the management of their own healthcare.
‘One way to do this is to use BCNA’s My Journey Symptom Tracker which can help people keep a record of the physical and emotional symptoms and side effects from treatment that they might be experiencing which can be shared with their treating team.’
As part of our policy and advocacy work, our consumer representatives, through BCNA’s Seat at the Table program, have played a key role in informing COVID-19-related policies and advocacy priorities on committees and taskforces at federal and state levels.
Some of the key issues we have actively advocated for, and continue to work on, are:
Leslie Gilham, a BCNA Consumer Representative in Melbourne, has been part of the Victorian COVID-19 Cancer Taskforce, along with BCNA’s Vicki Durston. The taskforce was established in response to the challenges involved with managing cancer care amid the pandemic. It also has subcommittees focusing on breast cancer, Telehealth and supportive care.
Leslie ensured the patient perspective was represented in the taskforce’s decisions. She also assisted with coordinating and collating feedback about the Telehealth system in order to identify issues and improvements.
‘Telehealth was new for everyone and there were a lot of issues to work through, in terms of barriers to access, technology, privacy issues and the overall patient experience,’ says Leslie. ‘I also worked with Cancer Council Victoria and BCNA to develop information sheets to help patients prepare for their Telehealth appointments. These were made available online and sent out to other organisations to use.’
The Telehealth subcommittee sent out a survey across Victoria to inform the design of the Telehealth model in the future. Many BCNA members contributed to this.
Susannah Morris is a BCNA Consumer Representative in Perth and has been involved at the federal level through the Cancer Australia Roundtable. She assisted with developing national frequently asked questions about the COVID-19 vaccine for people diagnosed with breast cancer and other cancers, and played a key role in developing and writing the information about the COVID-19 vaccines for BCNA’s My Journey.
‘We approached it from a perspective that people were not just concerned about the safety and efficacy of the vaccine, but also what it meant for their particular cancer and treatment. When someone has already had a potentially life-limiting diagnosis, they have different questions to those of the general population,’ says Susannah. ‘They also need to know the information is current and reliable so they can be empowered to make decisions about their own health.’
Susannah’s work included undertaking an analysis of where, when and how people with cancer could effectively access the vaccine around the country, a difficult and time-consuming task given the rapidly changing situations and health advice from state to state.
Both Leslie and Susannah admit their work to improve the experiences of people with breast cancer during COVID-19 has been both rewarding and, occasionally, frustrating.
‘Sometimes you think, why is this taking so long? You need to be resilient, keep restating your case, and remember, even if there has been some progress, we must keep going!’ says Susannah.
We have long advocated for the need for quality and accessible information, supportive care services, and programs to help manage the immediate and longer-term emotional challenges. We realise now, more than ever, the significance of exacerbated mental health impacts due to COVID-19.
As a result, we plan to undertake a survey of members to gain insights and explore the current impacts and consumer needs, to help plan for the demand for supportive care services. This will help inform our efforts to represent the voices of all affected by breast cancer as we continue to advocate for equity of access to optimal care and improved outcomes. This activity will be an extension of our 2020 COVID-19 Report.
For more information about BCNA’s Seat at the Table program visit our website.