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Stuart Farrimond

Advocacy Organizations and Professional Societies from Across the Globe Unite on Brain Tumour Patients’ Charter of Rights

By IBTA News, News archive

Tadworth, United Kingdom (3 July 2020) — Seventy-five organizations from around the world have endorsed 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 tumours. The Charter provides a framework for the reduction of inequalities in care and the achievement of policy objectives aimed at improving healthcare systems and communications. It can also be used by individual patients to underpin particular aspects of their care. 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.

The Charter 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 International Brain Tumour Alliance (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:

  1. Acknowledgment 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 policies, practices, and standards – a number of which will be aspirational in some countries  – are 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.

The Charter is freely available for download from the IBTA website here and can be used under a Creative Commons “Attribution-NonCommercial-NoDerivatives” (“CC BY-NC-ND”) license. Further details of this license are here.

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