On July 3, 2020, the National Brain Tumor Society (NBTS), along with more than 70 of our colleague organizations from across the international brain tumor community, welcomed the release of a new Brain Tumour Patients’ Charter of Rights. 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.
NBTS, as part of the drafting committee, helped spearhead this advocacy-based document, which creates a framework to help initiate positive change in the care of people diagnosed with brain and central nervous system tumors around the world. Ultimately, the goal of The Brain Tumour Patients’ Charter of Rights is to achieve the best possible health and quality of life for adults, children, and adolescents living with brain tumors by encouraging and supporting quality standards, policies, and practices. It can be used both by professional organizations and advocacy groups as a guide for the achievement of strategic objectives to better serve the brain tumor community, and by individuals patients to underpin particular aspects of their care.
Specifically, the Charter enumerates 10 fundamental categories of “rights” for brain tumor patients that every country should strive to deliver:
- Acknowledgment and Respect
- Appropriate Investigation of Signs and Symptoms
- A Clear, Comprehensive, Integrated Diagnosis
- Appropriate Support
- Excellent Treatment and High-Quality Follow-Up Care
- The Care Relationship
- Supportive/Palliative Care
- Rehabilitation and Wellbeing
- Medical Information and Privacy
- 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.
The Brain Tumour Patients’ Charter of Rights was developed through a multi-stakeholder and iterative process and is a “living document”, subject to annual review. NBTS will continue to sit on the drafting committee that will manage this update and review process. Other organizations can still sign onto the Charter and will be added on a rolling basis.
NBTS believes in the fundamental power of advocacy. We are proud to have been a part of this process and look forward to continuing to collaborate with both the patient and professional communities to improve the outcomes and care of brain tumor patients worldwide.