In Charity News

Today marks the first day of the British Neuro Oncology Society conference, which is held annually to promote research and education in Neuro-Oncology and to improve treatment of patients with tumours of the central nervous system.

This year brainstrust returns to BNOS with the hope that, thanks to our presence, the research and clinical community come away with further insight and understanding of the real issues that brain tumour patients face, and that they will help us tackle some of these problems.

This year we will be sharing the findings of our March 2013 awareness campaign, which encouraged patients and carers to share their day to day problems, no matter how big or small, over on www.braintumourawareness.org.uk.

It has been a fascinating exercise, but also emotional and upsetting to see the scale of what we’re really up against. However, we feel we have identified and formalised real patient and carers issues. This work will influence our own work programme, and hopefully get brain tumour researchers and clinicians to think about the neuro-psychosocial agenda for both brain tumour patient and carer communities.

Here’s a sneak peak of the poster that we will have on display at BNOS this year, and you can download a larger version to read and share by clicking here (PDF, 2mb).

brain tumour awareness - understanding brain tumour patient issues

Access to brain tumour data is also on our agenda

brain tumour patient information portalWe will also be promoting the Patient Information Portal, a project we’ve been working on for 3 years with the National Brain Tumour Registry and more recently Cancer Research UK.

This is a new online tool which will give brain tumour patients access to their registry held brain tumour records. There is more about the Brain Tumour Patient Information Portal here.

We are hoping that more centres will sign up to this pilot study, and that soon we will have the support from the clinical community to open the portal up so that existing patients, as well as new patients, can access their brain tumour information so that they too can benefit.