Driving improvemants in Neurorehabilitation for people living with a brain tumour is huge on our agenda: improvements here are key to unlocking brain tumour support for thousands of people.
With this in mind we are growing a community of clinicians and researchers who are interested in this field. 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 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. 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’
Brain Tumour 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. If you are a patient or a carer email Helen to let her know where you feel you could have done with more help. And if you are a clinician and want to sign up just email email@example.com.