IBTA RELEASES CHARTER OF RIGHTS FOR BRAIN TUMOUR PATIENTS - 

18 April 2010

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The International Brain Tumour Alliance (www.theibta.org), which is a patient advocacy group, today released a specific Charter of Rights for brain tumour patients worldwide.IBTA Chair Denis Strangman said that the rights are something to aim for. "It is an aspirational document and we hope that patients will use it as a reference point to evaluate their treatment.

"A brain tumour - of which there are over 120 different types - is a devastating disease and the last thing a patient and their family wants is to receive inadequate treatment. But we recognise that the world's best standard of care is not going to be available to everyone equally."

The Charter has been released on 18 April, which is the European Patients' Rights Day.


THE BRAIN TUMOUR PATIENTS' CHARTER OF RIGHTS

Introduction: There are a number of documents dealing with patients rights, some of which touch on the rights listed here.  But this Charter has been drafted from the point of view of the brain tumour patient with particular consideration for the difficulties which sometimes arise in the brain tumour journey. The IBTA has sought to ensure that the Charter will have worldwide relevance but we are mindful that many countries lack basic health facilities and the specialists and facilities relevant to the treatment of brain tumours. The Charter therefore represents an aspirational ideal which we should work towards. While asserting our rights we acknowledge that no rights can exist in human society without responsibilities.

(1) My diagnosis and prognosis should be conveyed to me with accuracy and in a compassionate manner, and preferably by an experienced clinician or specialist. I have the right to ask questions and receive appropriate answers at any point. I have the right to an interpreter if one is available.

(2) I have the right to maintain hope and to be supported in that hope by my medical team.

(3) I have the right to receive a correct diagnosis and treatment in a timely manner. I have the right to be included in the decision making process for my care. 

(4) I have the right to access the accepted standard of care in my country, no matter my age or ethnicity.

(5) My option to access care will be based on need, and not my ability to pay for it.

(6) I have the right to be told by my doctor about all available relevant treatments if he/she is aware of them in my country of residence, whether they are reimbursed by my country's national health system or by my private medical insurance, or not.

(7) I have the right to receive treatment and medication to relieve nausea, seizures, and brain swelling in particular, and other symptoms.

(8) I have the right to be accompanied to my appointments by a family member or caregiver of my choice who may help me recall all that is discussed. I have the right to take notes and/or record the proceedings.

(9) Either my or my legal guardian's informed consent is required prior to any treatment procedure. I will be informed if clinically-relevant delays in my treatment are expected and will be informed of alternative service providers who may be able to provide services at an earlier time.

(10) I have the right to multidisciplinary care, which may include - apart from my medical team's help - support from other specialists and information about relevant support groups.

(11) I have the right to be provided with the name and contact details of a staff member at my treating facility who may be able to answer urgent questions at times other than scheduled consultations.

(12) I have the right to be given copies of all my medical records, including radiology reports, pathology reports, both histopathology and genetic analysis, and digital copies of all my scans if that process is available. If I have donated tissue or any other bio-specimen for research or clinical trial purposes I have the right to receive available, easy to understand information about the genetic characteristics of my tumour should I wish to have that information.

(13) I have the right to express my opinion on the level of care that I receive at an institution without fear of retribution, and will be given information on the means of expressing this opinion to management level staff.

(14) I have the right to ask that my brain tumour is properly registered in my country's cancer registration records, whether it is benign or malignant. 

(15) I have the right to be told about relevant clinical trials available in my current treatment facility and offered a place if I meet the inclusion criteria, or be directed to the contact details for a trial taking place elsewhere to which I might be suited.

(16) I have the right to further opinions, including the right to be informed by a specialist if he/she believes they do not have the skills necessary to perform an operation, or administer a therapy, and to be given the name of another specialist or treatment facility from whom and from where such skills will be available.

(17) I have the right not to be discriminated against in my community or my workplace because I have a brain tumour. However, I acknowledge that my brain tumour might render me unable to perform employment or tasks of which I was previously capable.

Contact: Denis Strangman, Chair IBTA, chair@theibta.org