The Brain Tumour Patient Guide

patient guides e1532086074620

What is the Brain Tumour Patient Guide?

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. Written alongside esteemed clinicians and expert patients and carers, and in accordance with NHS England’s Information Standard, this guide is 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). It has been updated to include the recommendations in the 2018 Brain tumours (primary) and brain metastases in adults guideline.  It helps 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 NICE Improving Outcomes Guidance[1],[2]) 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
  • What brainstrust can do to help.


Using the Guide alongside  some of our other resources can really create a more informed, better understanding of what’s going on. For example, seeking second opinions with Trusted Doctor, or using our coaching will bring clarity and help decision making. Take a moment to listen to this video where our director of services and policy talks about the Guides and Trusted Doctor.

Getting hold of the updated Brain Tumour Patient Guide

The brainstrust brain tumour patient guide can be downloaded here. If you’d like hard copies copy popped in the post, please email, or call today on 01983 292 405.

[1] National Institute for Health and Care Excellence. (2006). Improving Outcomes for people with brain and other CNS tumours. [online] Available at: [Accessed 5 Jun 2018].
[2] NHS and National Institute for Health and Clinical Excellence. (2018). Brain tumours (primary) and brain metastases in adults. This is a document published by the NHS and NICE. It gives advice on the service arrangements for people diagnosed with a brain or CNS tumour.

Did this information make you feel more resourced, more confident or more in control?

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