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 of useful brain tumour support resources.
Use the links below to find out more about the resources that you can use.
brainstrust 24/7 brain tumour support line
“Thank you for being there Helen, at silly ‘o’ clock this morning” Sarah, January 2012
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 firstname.lastname@example.org or email@example.com or call 01983 292405
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.
Getting hold of the brain tumour patient guide
Click the images below to download sections of the guide relevant to you:
Free counselling support for brain tumour patients and carers
We don’t want people to be alone on their brain tumour journey – whatever their role. So we have never been ‘just a phoneline.’ brainstrust is a gateway to all kinds of experienced based brain tumour support. Real world, or virtual world, you can click on links, pick up the phone, meet, type, talk, text and share, but most of all, know that you are not alone.
I want to give individuals who are affected in any way by a brain tumour the opportunity to talk through their feelings in a safe and confidential place, and to help them develop strategies for managing their future.’
Counselling comes into play in brainstrust when there is too much distress and a psychological intervention is needed. Something is wrong and needs fixing. It has a broader focus and greater depth than coaching.
To access this service, simply email firstname.lastname@example.org, or call on 01983 292405
Hypnotherapy to help combat anxiety
Hypnotherapy can help brain tumour patients and carers to:
- Manage anxiety
- Reduce stress
- Create a different experience of pain
- Build confidence and optimism
- Prepare for surgery and promote post-operative healing
- Reduce of side effects of treatments, eg nausea and fatigue
- Optimise a healthy lifestyle to build resilience
Hypnotherapy at brainstrust is currently provided by two fully qualified hypnotherapists, Louise Baker and Mary Burgess. Our hypnotherapy service is being rolled out across the UK, led by Louise. All of our hypnotherapists will be educated in what it means to be diagnosed and living with a brain tumour, so that they have a full understanding of the challenges that this diagnosis brings, whether you are a patient or a carer.
Louise is an experienced trainer of Hypnotherapy, NLP Master Practioner, and she holds diplomas in Clinical Hypnotherapy and Psychotherapy. Louise has her own website at www.louisebakerhypnotherapy.co.uk
Mary is proud to be supporting brainstrust. Mary is a senior practitioner, aslo registered with the General Hypnotherapy Register and the General Hypnotherapy Standard Council. She works with local GP practices and says if anyone on the South Coast or IOW would like to hear about how hypnosis can help you and your families cope with the effects of having a brain tumour please visit my website www.maryburgesshypnotherapy.co.uk
“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”
Sarah, Scotland, August 2010
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).
- Have you lost your way? 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: www.theibta.org/RightsCharter.htm
- 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...
“this [brain box] truly is a very heart warming gift and I shall definitely be putting it to good use.” Shaun, Kent, November 2011
“I had a really lovely present today when your box arrived. I was not expecting all the useful gifts. I was expecting a few things about you. Wow” Claire, London, July 2011
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.
Every 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.
Created 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.
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.
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 www.issuu.com/brainstrust.
You can also give us a tinkle on 01983 292405 and we'll pop a copy of this indespensible guide in the post for you. For free.
Have you lost your way bookletbrainstrust provides its booklet “Have you lost your way?” 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 Andrew McEvoy, Consultant Neurosurgeon at the National Hospital for Neurology and Neurosurgery, to help you navigate your journey.
Click here to view interactive online booklet
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
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.
BookshelfWas 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 mattersAs 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
At 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!
GlossaryFlair 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
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.
Navigating 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