Patient guides

What care should you expect as a brain tumour patient? Good question. For some answers check out the new brain tumour patient guide.

brainstrust has published the first comprehensive, easy to understand guide to the adult brain tumour care pathway, to help you know what to expect and to feel more in control on your journey.

Written alongside esteemed clinicians and expert patients and carers, and in accordance with NHS England’s Information Standard, this guide will prove invaluable to people on the bewildering journey that comes with having a brain tumour.

The guide is based on the NHS and National Institute for Health and Clinical Excellence (NICE) 2006 Improving Outcomes Guidance (or IOG) to help patients and carers understand:

  • What happens at each point in the brain tumour pathway (i.e. diagnosis, treatment, follow up care).
  • What the optimum standard of care is (according to the NHS and the IOG) at each point of the pathway.
  • What else brainstrust thinks you can expect – to help you make the most of the resources around you.
  • Suggested questions you can ask clinicians (but only if you want to).
  • What brainstrust can do to help.  

The Brain Tumour Patient Guide is written in eight easy to understand sections, to be used individually or as a complete set. It will be particularly useful to patients and carers before they embark on each stage of their journey.

June 2017 – Please note that The Patient Guide is due for review under brainstrust’s Information Standard accredited process. This review is pending, as we await new guidelines for influencing outcomes from NICE, due for publication Summer 2018.  

Find brain tumour support on your doorstep, and current brain tumour trials at www.braintumourhub.org.uk

Getting hold of the brain tumour patient guide

The brain tumour patient guide is freely available to brain tumour patients and doctors and nurses working in relevant specialties.

Click the images below to download sections of the guide relevant to you: