The Brain Tumour Patients’ Charter of Rights & Financial Resources
Purpose of the Brain Tumour Patients’ Charter of Rights:
To achieve the best possible health and quality of life outcomes for adults and children living with a brain tumour. To represent an aspirational ideal against which quality standards, policies and practices are developed, monitored and delivered.
Introduction to the Charter
The document represents the perspective of brain tumor patients and caregivers and provides a set of standards for the healthcare experience to which all brain tumor patients and caregivers should be entitled — no matter where they live — while they navigate their treatment and live with this devastating disease.
This Charter has been drafted from the point of view of the brain tumour patient and caregiver with particular consideration for the difficulties which can arise while living with a brain tumour. This Charter has been created through a multi-stakeholder, collaborative and iterative process and is a living document, subject to annual review. It is hoped that this Charter will have worldwide relevance. The Charter is also meant to be a positive tool that can be used by other sectors of the international brain tumour community. The CERN Foundation, along with more than 70 colleague organizations from across the international brain tumor community, welcomed the release of the new Brain Tumour Patients’’ Charter of Rights on July 3, 2020. The National Brain Tumor Society, a partner of the CERN Foundation, was a part of the drafting committee and helped to spearhead the advocacy-based document.
The 10 fundamental categories of the Charter
1. Acknowledgement and Respect
2. Appropriate Investigation of Signs and Symptoms
3. A Clear, Comprehensive, Integrated Diagnosis
4. Appropriate Support
5. Excellent Treatment and High-Quality Follow-Up Care
6. The Care Relationship
7. Supportive/Palliative Care
8. Rehabilitation and Wellbeing
9. Medical Information and Privacy
10. Appropriate End-Of-Life Options and Care
Within each category, specific principles and measures aimed at reducing inequities in care and improving healthcare systems – some of which will be aspirational in some countries – are further defined.
Previous to the creation of this Charter of Rights specific to brain and spinal chord tumor patients, CERN shared a summary of the Consumer Bill of Rights and Responsibilities that was adopted by the U.S. Advisory Commission on Consumer Protection and Quality in the Health Care Industry in 1998. It is also known as the Patients Bill of Rights and can be accessed here for reference.
While the CERN Foundation does not offer direct financial support to ependymoma families, there are other organizations that provide financial assistance to help with medical bills, travel, housing, prescription drugs and other related costs. In our experience, we have also found it is useful to search for local organizations that provide financial assistance to members of the community in need.
Here are some financial assistance resources and ways to manage costs. For more information, talk with your treating doctor or social worker at your treating medical institution.
National Brain Tumor Society – Resources for Patient and Caregiver Assistance
National Cancer Institute - Managing Costs and Medical Information
American Brain Tumor Association - Financial Assistance
Cancer.Net – Financial Resources
American Cancer Society - Programs and Resources to Help With Cancer-related Expenses