Knowledge is power.
The healthcare system can be difficult to navigate at the best of times. Add in the stress of a sudden brain tumour diagnosis and it’s easy to become overwhelmed.
Don’t lose hope. Empower yourself.
Asking questions every step of the way will not only help alleviate your concerns, but could help uncover opportunities that might otherwise go overlooked by yourself and/or your healthcare team.
Because of the COVID-19 pandemic, it may not be possible for patients to have a caregiver or additional person present during their appointments. It can be easy to miss or forget details when attending appointments alone. Ask your health care professional if you can:
- Record the meeting
- Take notes
- Conduct the appointment online via Zoom or other video chat software
Tips on Advocating for Yourself
To be successful when advocating for yourself, you need to remain focused and be persistent. The more you understand your diagnosis, treatment options, and personal goals, the better you and your health care team can respond. This is also true of workplace accommodations, and other areas of interest to you.
Download this list of questions to bring with you to your health care appointments.
Understand the Diagnosis: Anyone who is advocating for themselves or someone else needs to understand the diagnosis and its effects in order to best communicate the needs of the brain tumour patient. It is important to read the latest research from credible sources, including national and provincial brain tumour associations, hospital websites, and peer-reviewed journal articles. In addition to understanding the diagnosis, it is critical to determine who on your team will lead the coordination of care. This could be a palliative care doctor, nurse practitioner, or other health care professional, in addition to a family member or friend. Brain tumors can be complex and having an organized approach will help you access better care. Consider joining one of Brain Tumour Foundation of Canada’s online support groups, to ask questions and learn from others who may have gone through a similar diagnosis.
Understand Treatment Options: What are the best and most effective treatment options for your tumour type? What are the options available to you? Where is your treatment centre located? Learn about any proposed treatments, as well as the side-effects both short and long-term.
Understand the Needs of the Individual: Define what it is that you, or the person you care for, requires. What are their goals – Is it quality of life? Is it access to a specific treatment? Establish these goals early on to keep focus in your self-advocacy efforts.
Understand the Gaps: What is standing in the way of the goals of the brain tumour patient? Who can make changes? Identifying the barriers between the brain tumour patient, the caregiver, and the established goals is the first step to overcoming them.
Work with Decision-Makers
When working with decision-makers, keep in mind what their scope is (ie: oncologist, employer, support worker). A successful approach includes these three things:
State What You Need in Simple Terms: Develop no more than 2-3 key messages that explain the main points of your issue in simple language to help focus the conversation and avoid misunderstandings.
Tell Your Story: Be able to discuss your issue(s) in the context of a story. Telling your personal story and the impact that change will have is an effective self-advocacy tool, no matter who you are speaking with.
Put Your Plan into Action: Communicate your needs, ask questions as you go along, attend appointments, and don’t be afraid to follow-up. Most importantly – don’t lose hope!