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 it could open up opportunities that otherwise would 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 loved one present during their appointments or diagnoses. Going in alone, it can be easy to miss details. Ask your health care professional if you can:
Record the meeting
Conduct the appointment online via Zoom or other video chat software
Tips on Advocating for yourself
To be successful with your advocacy, 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 appointment.
Understand the Diagnosis: Anyone who is advocating for themselves or someone else needs to understand their diagnosis and how it affects them in order to best communicate the needs of the brain tumour patient.
Ask everything you can from your health care specialists.
Read the latest research from credible sources.
Join Brain Tumour Foundation of Canada’s online support groups and ask questions of others who have gone through the same 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 your loved one, 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.
The Gaps: What is standing in the way of the goals of the brain tumour patient? Who can make changes? Identifying the barriers between yourself, your loved one, and their established goals is the first – and most important – 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 Simply: Develop no more than 2-3 key messages that explain the key points of your issue in simple language. Positioning these messages within your audience’s interest and concerns presents a win-win for both parties.
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 the key to effective self-advocacy no matter who you are speaking with.
Put Your Plan into Action: Build relationships, communicate, set up your meetings, appointments, and follow-up. Most importantly – don’t give up!