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brainstrust Brain Tumour Support Resources

We need the right resources and support with us on our brain tumour journey; a little bit of planning goes a long way.


These are the resources that we have found indispensable – created by brainstrust with our community of brain tumour patients, their carers and clinicians, to help you. And if you have an idea which we have missed but which you have found invaluable then send it our way – we’ll add it to this list.

If you’d like a hardcopy directory of all of the resources that we offer, then you can download our Support Catalogue. Or just email and we’ll send some in the post for you.


Use the links below to find out more about the resources that you can use.

brainstrust 24/7 brain tumour support line


I do not know the date I found brainstrust, I only know it was in the middle of the night, about 3am, and I was in a state. I found the number, rang, left a message and got a call straight back. I was amazed that someone could care.  I think she said “but you needed me now” and since then that is the only thing I have ever felt from this charity- love, support, friendship and care.”

Open 24 hours a day, 7 days a week, the brainstrust support line offers brain tumour patients and carers support, information and pragmatic advice over the phone and by email.

  • experience based brain tumour support ­- talk to patients and carers
  • qualified coaches on hand
  • expert clinical advisors on hand

Need help now? To use this resource, email or call 01983 292 405

The Brain Tumour Patient Guide - know what care to expect on your journey

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.  

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:

      Download pdf
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To find out more or to request a printed copy of the Brain Tumour Patient Guide (limited numbers), email or call us on 01983 292405




Tools to help you with brain tumour fatigue

brain tumour fatigue banner


We know that one of the most frequent and distressing problems described by people living with a brain tumour is fatigue. But brain tumour fatigue is different. It occurs with emotion, cognitive and behavioural problems and can be due to neurological dysfunction, treatments, mood disturbances and supportive medications.

This resource is really important as it enables patients and caregivers living with a brain tumour to understand what is meant by fatigue and to self-manage brain cancer related fatigue so that they: 


  • Understand and evaluate their fatigue
  • Learn a new pace of living
  • Take steps to mitigate the impact of fatigue
  • Make the most of what they can do, rather than what they can’t.

This up to date, tangible resource clearly informs patients and their caregivers about:


  • What we mean by fatigue
  • Causes of fatigue
  • What is different about fatigue for people living with a brain tumour
  • Coping with fatigue in different contexts
  • Sleep hygiene
  • Self activation measures (breathing, mindfulness, activity scheduling, prioritising, acceptance commitment theory, exercise)
  • Goal setting
  • Fatigue diary
  • Looking after someone who has fatigue
  • Drug treatments for fatigue
  • Who can help

It underpins adn complements brainstrust's fatigue coaching workshops which help our community to:


  • Understand fatigue and how it is different for people living with a brain tumour
  • Explore how being fatigued is impacting on quality of life
  • Learn about effective strategies so that the person owns the fatigue, rather than it owning them.


Getting hold of the brain tumour fatigue resource Brain tumour fatigue resource rear

YOU CAN DOWNLOAD THE FATIGUE BOOK HERE, or to order a hard copy email

And once you’ve read it you’ll no doubt be wanting to download some of the proformas that you need to help understand your sleep a little better. These can be accessed by clicking on the link.

The first is the Brief Fatigue Inventory used by clinicians to assess the severity of fatigue and the impact of fatigue on your daily functioning. It takes about five minutes to complete and is usually completed with a healthcare practitioner.


The second is the fatigue diary. If filled in over time this will help you identify patterns in your sleep behaviour.



Peer Support for people brain tumour patients and caregivers

Why peer support? Here at brainstrust we don’t underestimate the value to talking to someone who has had a similar experience. Our community overwhelmingly report that a brain tumour diagnosis is frightening, isolating and bewildering. Talking to someone who has already been through the same experience can help to reduce the isolation, help to make sense of what is happening, and reduce the fear of the unknown.

Who are peer supporters? Peer supporters are trained volunteers who have been through a similar experience to you – whether you are the patient or caregiver. They will provide reassuring support by answering your questions about their own experience and can also:

  • Help you to prepare for your appointments – supporting you to work out what questions you need answered;
  • point you in the direction of useful resources;
  • help you weigh up different treatment options by asking questions to help identify what’s at stake; and
  • be there to listen at a time when it’s most needed.

Click here to find out more about peer support

Counselling support for brain tumour patients and carers


Counselling creates the space for you to talk through your feelings in a safe and confidential place. It will help you to develop strategies for managing your future. It comes into play when support is needed to understand psychological distress associated with, what is sometimes referred to as, “problems with living”. 

For example, it may be helpful for someone who is struggling to cope or feeling very anxious or depressed. Counselling tends to have a broader focus and greater depth than coaching. It helps people to explore and understand the feelings which are causing them grief and to identify and explore steps for moving beyond these feelings to make positive changes in their lives.  Counselling can be very challenging as it can often unearth very painful feelings, make people confront unresolved personal issues and challenge them to change the way they go about their lives today and in the future. Counsellors help people by building a supportive relationship which is based on the essential qualities of acceptance/warmth, genuineness and empathy. Like coaching, they do not offer solutions or advice, but instead help the client to identify their own issues and ways of moving forward.

You can download more information about counselling for people affected by brain tumour here.

If you would like to use this service then please complete the referral and the agreement forms (downloadable here) and pop them in the post to:

- counselling

4 Yvery Court

Castle Road


PO31 7QG


 or scan and email them to

Hypnotherapy for brain tumour patients and their carers

What can be helped with Hypnotherapy?

  • Anxiety and stress
  • Diet and Lifestyle
  • Resilience, Self Esteem and Confidence
  • Pre and Post Operative care
  • Pain Management
  • Reduction of side effects from treatment such as nausea, fatigue
  • Well being

We’re delighted to have Louise Baker working with brainstrust. Louise is an experienced trainer of Hypnotherapy, NLP Master Practitioner, coach and Time Line therapist. She holds diplomas in Clinical Hypnotherapy, Hypnotherapy and Psychotherapy and has a Specialist Certificate in Past-Life Regression.

Louise Baker has many years experience as a Clinical Hypnotherapist, having helped hundreds of clients deal with a wide range of issues. She is passionate about hypnotherapy and is really pleased be able to support people affected by a brain tumour.

‘I love helping people change and achieve a sense of well being. By working with me, you can clearly identify what you want and take the steps needed to get there.’

Louise has worked closely with brainstrust to establish a network of qualified hypnotherapists across the UK. We have met all of them, checked their credentials and shared with them the challenges of what it is like to live with a brain tumour.

Interested in hypnotherapy or need more information? 

Just call brainstrust to discuss your situation in complete confidence 01983 292405 or email

Brain box

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“It provided a real beacon to them in an otherwise very bleak time. In all, it provided a huge impetus to us all to take control”


The brainstrust brain box - the ‘must have’ support toolkit for people with a new brain tumour diagnosis and their carers.


We appreciate how difficult things can be once you are diagnosed with a brain tumour; the ‘4.00am moments', the travelling to and from appointments, the stream of questions that pop into your head, trying to remember the jobs of all the people that you'll meet on your journey, and knowing who to turn to and when. A juggling act that you don't need when you just want to focus your energy on feeling better. 


So to assist brain tumour patients, we’ve launched this unique invaluable aid to keeping on top of things.


The brainstrust tool-box shaped ‘brain box’ contains a number of essential things to support and provide information for brain tumour patients and their carers:


  • My Brain Book (click here for more info).
  • The Little White Book (click for more on the Little White Book).
  • Who's Who in your clinical team? Booklet (more here)
  • A copy of Professor Black’s ‘Living with a Brain Tumour’, also available through our online store.
  • IBTA (International Brain Tumour Alliance) Charter of Rights for brain tumour patients. This is also available online, here:
  • brainstrust stress brain -  to release stress by squeezing , or throwing at things!
  • Sunny highlighter - to help with learning
  • Pack of brainstrust Christmas cards
  • Tea bags – absorb all the contents of your brain box with a well deserved cuppa
  • And if the box is for a child, then it will also contain a copy of ‘The Snaggle Tooth Splat’ (More info here), written to help parent carers or patients broach a brain tumour diagnosis with their children. It is a beautifully illustrated book and was featured in the BMA newsletter and Oncology News magazine. And our mascot, Ellie - a crocheted red elephant . You can also buy Ellie the elephant from our shop - click here.

The above is the standard, but contents may sometimes change. Other literature and useful bits and pieces are often included as well. Please note that everything in the brain box can also be obtained separately if you like. Just let us know.

If you are a brain tumour patient, or if you are looking after someone who has a brain tumour, the box won’t cost you a penny. We just need to know a little bit more information about you before we send you your box. Please complete to the short form below to request your brain box:

Become one of the amazing people that sponsor a brain box... 

Received the brain box yesterday- I cried with happiness. It’s just what we needed – the booklets, information, tea and even hand cream. You have restored our faith in human nature. Thank you"

Do you like the idea of a brain box? Would you like to help someone affected by brain cancer directly, and know that your thoughts and donation have gone straight to the person that needs them most? Then why not sponsor a brain box.

brain tumour support - sponsor a brain boxEvery brain box costs brainstrust about £50, but provides priceless information to people across the UK who are living with a brain tumour.

A donation of any size to help us cover these costs, and your words of support or advice will make a real difference to someone, somewhere who has just received a life-changing brain cancer diagnosis.

To sponsor a brain box, and share some words of support with someone who's just been diagnosed with a brain tumour, simply click a button below and make a donation. Make sure to leave a message and we’ll make sure your message is then hand written on the special card that’s included in the brain box that we send out on your behalf.

Click a button below to sponsor a brain box. It's quick, easy and secure with Virgin Money Giving and JustGiving


Sponsor me on Virgin Money Giving JustGiving - Sponsor me now!

The Brain Tumour Hub

brainstrust - brain tumour support with the brain tumour hubCreated for brain tumour patients and carers, the brain tumour hub is an authoritative, easy to navigate database of brain tumour support resources and UK based brain tumour clinical trials.

It is intuitive, easy to use, developed with clinicians, patients and carers, and constantly evolving with regular updates.

Click here to visit the braintrust brain tumour hub at

'My Brain Book' - a place for you to keep a record of your journey

As the patient journey unfolds, you will need to record lots of things. This is a place for you to do just that.

In this patient folder, you can record information about yourself, about the team that are looking after you, you can record appointments and outcomes, and there's also plenty of space for you to jot down those questions that pop into your head in the early hours. Patients can also keep a disc of their brain scans in here, and there's also a pocket in the back of your brain book where you can file letters, or receipts for travel expense claims.


brainstrust brain book brainstrust brain book brainstrust brain book brainstrust brain book


Call us now on 01983 292405 to get your hands on a free copy of the brainstrust Brain Book.

The Little White Book

A comprehensive, easy to navigate compendium of UK brain tumour support resources. You can access an online copy through our online catalogue with

We also produce regional editions of 'The Little White Book', signposting all of the best support available to you, wherever you might live. Click below to download your relevant guide.

Just send us an email - and we'll pop a copy of this indespensible guide in the post for you. For free.

"Who's Who in your clinical team?" Booklet to help you work out who to turn to, and for what.

Have you lost your way bookletbrainstrust provides this booklet to neuro-oncology specialists and Macmillan Centres nationwide.

Many patients find that they are left to manage their care pathway for themselves. brainstrust has developed this resource with the National Hospital for Neurology and Neurosurgery, to help you navigate your journey.

Click here to open and download printable pdf
Tell us what you think...

We'd appreciate it if you could take 2 mins to tell us what you think of this booklet.
Click to complete our 2 min online survey

The Snaggle Tooth Splat


The snaggle tooth splat brain tumour support Written for brainstrust to help parent carers or patients broach a brain tumour diagnosis with their children. It is a beautifully illustrated book and has featured in the BMA newsletter and Oncology news. The forward has been written by the lovely actress and brainstrust supporter, Julie Walters. 

If you are a parent who has been diagnosed with a brain tumour, or are looking after a poorly little patient, then you can have a copy of this book, for free. Simply give us a call on 01983 292405. 

Every brain box that we sent out to a family will also feature a copy of The Snaggle Tooth Splat.



How to hold a difficult conversation

We know how hard it is, explaining brain cancer, and having to hold those difficult conversations.

This guide helps families with approaching these moments. It features tips that will help you can get your thoughts together and clarify how you feel about what it is you’re facing, so that you can hold better conversations and feel more in control.

Click here to read our difficult conversations guide.


My radiotherapy book: information to help you understand the treatment 

We know how confusing a brain tumour diagnosis is and the follow treatments can be. This resource will help you understand, and take control. 

My radiotherapy book outlines and explains the range of radiotherapy treatments that are currently available, so that you know what would be the best treatment for the type of brain tumour you are living with, whether you are a carer or a patient.

Click here to download the booklet. 




Was it C. S. Lewis who said 'we read to know that we are not alone'? Since our voyage began I have read copious books related to neurosurgery – not all non-fiction. If reading helps you, then here a few recommendations.

“After just a quick dip into Peter Black's book  ... I feel much better and more determined to get back in control of the direction my treatment is heading.” Sarah August 2010, Scotland

And if you purchase a book through our store Amazon will donate 10% of what you spend to brainstrust.

Click here to visit the brainstrust bookshelf

Money matters

As if you haven’t got enough to worry about. Having a brain tumour will, at some point, impact on you financially as well as physically and emotionally. The same guiding principle applies – look this tiger in the eye. The more prepared you are, the better you will be prepared if you need additional financial support.

View money matters

Meet Ups

brainstrust meet upsAt a brainstrust Meet Up, members of the brain tumour community get together to have fun. No matter where you are on your journey or what role you have (such as carer, patient, health care professional) you can share experiences, and seek information from people who know what you’re going through. But only if you want to. Feel free to just come along and enjoy. Past Meet Ups have involved pizza and wine, pub grub, and cream teas. And what’s more, it’s all on us!


To come to one of our Meet Ups and to see what’s going on, or even to set one up in your local area, click here to register on brainstrust’s Meet Up page.


Flair sequence? Positron? Glial Cells? Feel like you are back at school? Faced with a new, complex language really can make you feel all at sea. Use our glossary to help you navigate the doctors’ lingo.

View the glossary

Useful contacts

For a comprehensive and unique list of all UK support groups for brain tumour patients, and details of centres running clinical trials, simply click here and take a look at the brain tumour hub


We've also compiled a useful list of neurocentres around the country, useful if you're thinking of sourcing an expert further opinion. Click here to view the interactive map of helpful contacts.

Useful links


Information Standard LogoNavigating your way through the Internet can be daunting.

Some sites are more trust worthy than others. You can always look out for the Information Standard logo (we are proud to say we were the first brain tumour charity to receive this accreditation). Where this appears, you can be assured that the information you are reading has been developed using a process approved by the English Department of Health. We have also listed here the sites that we know people have found useful, so although you won’t be able to shop online here, you will be able to find out ‘stuff’.

View our links


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