The Brain Tumour Patient Guide

What care should you expect as a brain tumour patient? Check out the most up-to-date brain tumour patient guide.

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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 creates 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.

In May 2019, the guides received official endorsement from NICE, this means that you can be confident that this resource is aligned with evidence-based guidance and is backed by one of the most respected and internationally recognised clinical organisations.

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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:

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

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