Brain tumour supportive care
Introduction
If you or a family member has been diagnosed with a brain tumour it will be a difficult time.
It is important that you feel supported and well informed, to help you be involved in decisions about your care.
There is information available from the NHS and from a variety of charities which may be useful and enable you to have more sense of control.
Working effectively with your clinical team
Braintrust has helpful information on what to expect if you are diagnosed with a suspected brain tumour. brainstrust-pathway.pdf (rocketcdn.me)
Second Opinions
You have the right to ask for a second opinion, but not everyone wants to exercise this right. Braintrust has information on second opinions, as well as a document guiding you on how to go about getting a second opinion.
The Brain Tumour Charity also has information on how to get a second opinion.
Peer Support
Peer support is about speaking to people in a similar situation. Braintrust has guidance on how to access peer support which you may find helpful in reassuring you that you are not alone, and can help you to make sense of what is happening.
Braintrust has guidance on working effectively with your clinical team and provides tips on how to hold discussions with the team looking after you.
These links give some tips on how to have discussions with the team looking after you.
Being informed
Being informed – Having access to reliable information may reduce uncertainty and fear and helps with decision making. These resources have been produced with leading clinicians and have passed the independently assessed quality mark for trusted health information.
Taking control
Braintrust provides practical information about dealing with anxiety over scans, issues with driving and specific challenges for brain tumour patients.
Acceptance
Acceptance – Acceptance allows you to find peace with life’s challenges and things you can’t control.
Feel less alone
Peer support and online events to reduce isolation.
Helping myself
Helping myself – Meeting others online and attending workshops helps reduce isolation and increases resilience.