The Pediatric Brain Tumor Foundation joins organizations from around the world in endorsing the new Brain Tumour Patients’ Charter of Rights, a document intended to help initiate positive change in the care of people diagnosed with brain and central nervous system tumors. PBTF partnered with the International Brain Tumour Alliance (IBTA) to represent the pediatric perspective in the Charter’s development.
The Brain Tumour Patients’ Charter of Rights aims to equip brain tumor patients and their families with knowledge of the rights they can ask for and rights the whole brain tumor community is working toward. The goal of the Charter 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 at hospitals, schools and in the workplace.
Families of a child diagnosed with a brain tumor can access the Brain Tumour Patients’ Charter of Rights here and may find it helpful in creating a plan for what matters most to them during treatment and all that follows.
“Pediatric brain tumor patients and their families face a host of complex issues as they navigate treatment and beyond which presents unique challenges to those diagnosed in childhood. The Pediatric Brain Tumor Foundation endorses the Brain Tumour Patients’ Charter of Rights as an important document that empowers families in their conversations with healthcare providers, school staff, social services and others,” says Kathy Riley, MPH, CHES, Vice President of Family Support at PBTF.
The document sets out the rights to which all brain tumour patients and caregivers should be entitled no matter where they live in the world.
“The Brain Tumour Patients’ Charter of Rights has worldwide relevance,” said Kathy Oliver, Chair of the IBTA and one of the members of the Charter drafting group. “We’re excited that so many patient organizations and professional societies are supporting the Charter and we hope it will prompt productive discussion and debate and bring about positive change where necessary. The Charter is the result of a truly global collaborative process to help people who are diagnosed with this devastating disease, and those who care for them and treat them.”
The Charter enumerates ten fundamental categories of “rights” for brain tumour patients that every country should strive to deliver with specific policies, practices, and standards defined in each category: 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
“Every caregiver and patient wants and deserves the best possible outcome following a brain tumor diagnosis. The Brain Tumour Patients’ Charter of Rights is a comprehensive, living document that effectively levels the playing field for all and provides a stable framework for the long and difficult brain tumor journey,” says Amy Peña, parent of a child diagnosed with a brain tumor and member of the PBTF’s Family Support Advisory Council.
The Brain Tumour Patients’ Charter of Rights was developed through a multi-stakeholder and iterative process and is subject to annual review. It can be accessed here.