Your right to know
Your right to know
Being given the right information is important for you and your family . It will help you to make sense of what you ’ ve been told and help prepare you for the next stages in your treatment or care .
• When you receive the diagnosis of a brain tumour , it should be communicated to you face to face , sensitively and in a private space – it ’ s okay to ask if there is somewhere more private that you and your family can be when you are talking to a doctor or nurse at any time .
• If you want family or friends with you , then you should be able to have them there .
• You should be given time to ask questions and not feel rushed – it ’ s a lot to take in . Take time out to write down any questions before your appointment so that you get all the answers you need . There really is no such thing as a silly question .
• You should be given information and details of local support services – if you ’ re not , then do ask . There may be support available in your area that you ’ re not aware of .
• You should be given information to take away about your tumour type and the possible long-term effects it may have . We know how difficult it is to remember what you ’ ve been told and it ’ s even harder to take it all in one go .
• You have the right to ask for a second opinion about your diagnosis and treatment , so don ’ t be afraid to ask if you have any concerns about what you ’ ve been told .
• You should be made aware that your health data is recorded and used to monitor how many brain tumour diagnoses are made each year and what treatments are used . We believe it ’ s really important that this data is collected as it helps us understand the bigger picture of brain tumours across the whole country , but you should be told how it ’ s used .
• You should be given the name and contact details of a keyworker who can answer any questions about your diagnosis and the next steps . This is usually a clinical nurse specialist who is experienced in supporting people with brain tumours and will play a key role in the coming weeks and months . Remember to keep their details to hand .
If you haven ’ t been given or told any of these things , then please do ask a member of your healthcare team .
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