Peace of Mind Foundation’s Community Navigator program set to expand
Australia’s first and only Community Brain Cancer Navigator engaged by Peace of Mind Foundation provides direct support to those impacted by brain cancer. From point of diagnosis right through to bereavement, this vital role helps patients and families navigate the complexities of living with a brain cancer diagnosis.
The program is now set to expand, with Peace of Mind Foundation announcing a new position in Ballarat/Bendigo has been given the go ahead, with plans for additional roles in the near future if funding can be secured.
Peace of Mind Founder Rebecca Mallett
Peace of Mind Foundation CEO and Founder Rebecca Mallett says the program is of enormous importance to support brain cancer patients and their loved ones.
“A Brain Cancer Community Navigator plays a vital role in the lives of those affected by this devastating disease. Navigating the complexities of a brain cancer diagnosis, treatment options, and support services can be overwhelming for patients and their families. The navigator serves as a knowledgeable and compassionate guide, helping individuals understand their diagnosis, connect with appropriate medical professionals and resources, and navigate the difficult road ahead,” she says.
“They provide invaluable emotional support, helping patients and families cope with the challenges and uncertainties that come with brain cancer. By bridging the gap between medical care and community support, a navigator empowers individuals to make informed decisions and access the assistance they need throughout their journey with brain cancer.”
The focus of the Community Brain Cancer Navigator is to support people living with brain cancer in their home and outside of a medical environment. The position acts as a navigator in drawing attention and priority to the current and future needs of the patient and their family and acting as an interface between the patient, the health system and service providers.
Australia’s first Community Brain Cancer Navigator Jonathan Muller with patient and Peace of Mind Foundation ambassador Emily.
Peace of Mind Foundation’s Senior Community Brain Cancer Navigator Jonathan Muller took up the role three years ago and, in that time, has worked with hundreds of families in the Barwon region, last year traveling over 26,000 kilometres to around 600 in-home visits to brain cancer patients and their families.
Jonathan’s role is firmly based in community where he walks alongside families in a phase of contact which typically fall into broad stages:
1. Meeting people soon after diagnosis and navigating the initially fast-moving activity of radiotherapy and commencing chemotherapy.
2. This is followed by a lull, almost into normalcy and a period of acclimatising, often reported as feeling surreal.
3. The arrival of the dreaded MRI shows disease progression accompanied sometimes by symptoms and physical deterioration.
4. Entering the final phase of bed-based care and death.
5. The bereavement phase of initial shock and shaky re-entry to a new life without a family member.
Jonathan describes his role as one where meaningful, supported connections are formed while providing practical information.
“This role really engages the entire scope of the brain cancer journey. A key strength of the role is that it is not task driven, but instead being faithful to meet people's needs as they present uniquely in every household and at each stage of the process. I increasingly appreciate the value of the role providing a dedicated person delivering continuity of care. This capacity is unique,” he says.
“I find I have an increasingly honed skill set in the real day-to-day practicalities that fall outside the scope of the health system. It is a real bonus for brain cancer patients and their families. More and more convincingly, I see the enormous benefit of being a physical presence in the household. This is difficult to put into words or categories, however it becomes more evident increasingly towards the end of life where interventions are very limited. This speaks to valuing reassurance, stability, normalcy, care, friendship, attentiveness, experience and willingness.”
The role of the Community Brain Cancer Navigator is one where no two days are ever the same. As an example, a day typical day for Jonathan’s may look like:
Meeting a family for the first time soon after diagnosis to educate on their understanding and the ramifications of a brain cancer diagnosis, answering questions that were unable to be asked in the fast-paced environment of the hospital setting.
A phone call from a bereaved carer seeking to understand death certificates and legal processes.
Visiting a family to help identify an enjoyable activity like a weekend away. Guiding them to set a goal and assisting them with some grant money and logistical coordination to make it a reality.
Meet a carer for a walk in the park to give safe neutral ground to talk over the challenges and realities of caring for their loved one.
Liaising over the phone with the oncology or palliative team supplying additional information to best coordinate cares.
On route home drop off some basic equipment and practical pointers for mobilising around the house or making communication clearer in the household.
Peace of Mind Foundation are hoping to one day have Community Brain Cancer Navigators in every State and Territory.
“The overwhelming response from patients and families is incredibly positive with families telling us just how much of an impact having this program made to their brain cancer journey,” says Rebecca.
“Our vision is to raise enough funding support for a national program because we know just how impactful it is to have this specialised service for the brain cancer community.”
“No family should have to go through this alone, and the success of this program tells us that these roles make a huge difference.”
Peace of Mind Foundation gratefully acknowledges the support of Hospice Foundation Geelong to the funding of Jonathan’s role, with a much-appreciated contribution from APCO Foundation.
The new Navigator role is thanks to the contribution of APCO Foundation, Zoe’s Fight and All About Art and support of Ballarat Hospice.
Peace of Mind Foundation is actively seeking funding partners to continue to expand the Community Brain Cancer Navigator program Australia-wide.
