brainstrust co-founder and Director of Services, Helen Bulbeck has recently received a publication in Oxford Medicine Online on this very matter.
Click here to read, and understand how the relationship between clinician and brain tumour patient can be developed to ensure greatest possible impact on care, outcomes and quality of life.
Top tips for brain tumour patients and caregivers include:
- Replace the question ‘are you ok?’ (nobody ever answers this with the whole truth) with ‘what are you struggling with the most?’. The answer may not be clear, but just asking the question can unlock the challenge.
- Prepare for consultations. Think, talk about what a good outcome would be before the consultation. Tell the clinician what you want to get out of the consultation – revisit this at the end. Summarise next steps and who could help you with these actions.
- Let people around you know how they can help. Be specific. Don’t feel bad about it. If you were in their shoes you’d want to help.
- Read, lots. Then whatever decision you make will be an informed one. If you don’t want to, ask someone close to you to do it and distil the key messages to you.
- Ask about clinical trials. Only 24% of patients were asked if they would be interested in research. It is incumbent upon us, the patient community, to ask about trials and how to donate tissue if you’re having surgery.