Championing what matters most to patients

Bowel Cancer Australia

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We know bowel cancer is more than just a conversation killer.
Claiming the lives of 80 Australians each week, it is the nation’s second biggest cancer killer.
The statistics are startling, but they actually mask how hard it is to wait for test results, or the helpless feeling that cancer is present, yet not knowing the full extent of what that will mean.
The stories patients share with our Bowel Care Nurses daily are what truly bring the message home that more needs to be done to help those affected by this disease.
Options can be so confusing and sometimes make things more stressful, as patients try and navigate a system which can feel foreign and frightening.
Although treatment won’t last forever – for a patient who has been told, “You have bowel cancer,” they and their bowel have changed forever.
For many bowel cancer patients, the end of treatment marks the beginning of a new ‘normal’.
As part of our commitment to helping those affected by bowel cancer to live the life they want with access to high-quality treatment and the best care, Bowel Cancer Australia co-sponsored the development of the world’s first Colorectal Cancer Standard Set in 2016.
Tomorrow, we are pleased to share what patients told us about what matters most to them, at the inaugural ICHOM Australasian Forum in Sydney.
We want GPs to be able to make informed decisions about referrals to specialists and to hospitals, based on what matters most to their patients, in terms of patient treatment and long-term outcomes.
That is why we co-sponsored the development of the Colorectal Cancer Set, which will provide a platform for patients to share details about quality of life issues as they occur, along their treatment pathway and for ten years beyond treatment – issues like social functioning and dietary restrictions, which can directly affect an individual’s ability to engage in activities they previously enjoyed.
We believe the time has come for the international standard to be adopted and built upon in Australia and internationally, so that bowel cancer patients can have access to patient-reported outcomes that support them as active participants in their decision-making about their own care.
Importantly, patients who participate in sharing their experiences will not only be contributing to a knowledge base that will help improve treatment for others, they will also receive timely Bowel Cancer Australia resources and emotional support appropriate to them at each stage of the care continuum – valued and trusted services Australians have come to rely upon from Bowel Cancer Australia.
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