Here at brainstrust we know good rehabilitation and psychological care improves quality of life for people with living a brain tumour. And a better quality of life often means a better outcome.
But we know that this care is hard to get right. Our work (link to pinboard here) to understand real issues that people with a brain tumour face has shown us this. Despite having had excellent treatment, people feel lost, confused and isolated. And this isn’t right.
We want to make things better. To do this we need to understand the issues in more depth. We need your help. Our community is a conduit for people to solve collectively and collaboratively the issues that need addressing. A significant gap on the patient journey is survivorship; there is too much focus on surgery and adjuvant therapies and not enough follow up:
- ‘A disproportionate focus on surgical and oncological outcomes’ National Peer Review: brain and CNS cancer services report 2012/2013
- ‘The fight is so much harder than the diagnosis’ Carer, 2013
Simply by joining a conversation, you will help us understand more about the problem, so we can make things better for people who have had treatment for a brain tumour. So please, join the conversation today. To sign up just email firstname.lastname@example.org.