Advocating for Yourself

Brain tumour patient and family advocacy toolkitSelf-advocacy means working to help yourself or a loved one diagnosed with a brain tumour obtain needed services and to maximize their quality of life.

It is important for brain tumour patients and their networks to be able to speak for themselves and obtain their rights as patients to bring positive change to their lives. Self-advocacy may help individuals to gain access to needed services and treatments.

This means taking the steps necessary to initiate change and achieve a goal, whether that goal is to get information, obtain a service, or change a policy. The following tips lay out our Toolkit for Self-Advocacy:

Tips on developing a successful self-advocacy plan for brain tumour patients and families

Understand the Issue

To be successful with your advocacy, you need to remain focused and be persistent. Whether advocating for access to health care, workplace accommodation, or another issue of importance to you, understanding your issue and developing a plan to self-advocate will be your essential guide.

  • Understand the Diagnosis: It is very important that anyone who is advocating for themselves or someone else understand their diagnosis and how it affects them. With this understanding you can best communicate the needs of the brain tumour patient.
     
  • The treatment options: Just like understanding the diagnosis is important, understanding the treatment recommendations, potential side effects and any other impacts on the individual and family is critical to effective self-advocacy.
One step to ensuring you understand your diagnosis and treament is to obtain a copy of the Brain Tumour Handbook.

Understand Your Needs

  • Understand the needs of the individual: Once you understand the diagnosis and treatment recommendations, the next step is to understand what you, or your loved one, requires - what are their goals? Is it quality of life? Is it access to a specific treatment?
     
  • The Gaps: What is standing in the way of the goals of the brain tumour patient? Who can make changes? 
Explore the key players connected to medication approval, provincial ministries of health and media to identify who you can contact to highlight these gaps. If you need help with access to specific medications, you may find help here.

Work with Decision-Makers

  • State What You Need Simply: Understand your audience's interests and concerns, and where your issue fits in. Develop no more than 2-3 key messages that explain the key points of your issue in simple language. Position these messages onto your audience's interest and concerns, presenting a "win" for you and your audience.
     
  • Tell Your Story:  Be able to discuss your issue in the context of a story. No matter who you are going to speak with, telling your personal story and the impact that change will have, is  the key to effective self-advocacy.
If you are going to reach out to specific media or government contacts, start here.
  • Put Your Plan into Action: Build relationships, communicate, set up your meetings or appointments, and follow-up and don't give up!

Share Your Success, Your Frustrations and Your Hopes

Contact Brain Tumour Foundation of Canada to share your experience: The brain tumour community can learn from your success and any opportunities for improvement that your efforts highlight. We encourage you to get in touch with us to let us know how your personal advocacy efforts succeed and to share your concerns so that we can work towards change for the entire brain tumour community.




<back to Information for You

 

To share your experience with advocacy or learn more about Brain Tumour Foundation of Canada's efforts please contact:

Susan Marshall
Chief Executive Officer
smarshall@braintumour.ca
1-800-265-5106 or 519-642-7755, ext. 222

 

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