We know that once diagnosed with a brain tumour, children feel scared, and their carers isolated. We know that the diagnosis can have a huge impact on parent and caregiver’s lives, but you don’t have to go through this alone.
Little things can help ease you through. Below are some new resources that you might find helpful. All are free to brain tumour patients and their loved ones. If you would like to request hard copies of any of the resources please get in touch with our Support Specialist for children and families
To find out how we can support you and your family, have a read of our support catalogue.
Order a brain box
The brainstrust little brain box – the ‘must have’ support toolkit for people with a new brain tumour diagnosis and their family. To assist brain tumour patients, we’ve launched this unique, invaluable aid to keeping on top of things.
Who’s who: Children and teens’ clinical team
This guide has been produced by brainstrust and has input from esteemed healthcare professionals and parents of children with a brain tumour. This who’s who is designed for parents, children and teenagers to gain an insight into what the role of each professional is.
Radiotherapy and me
This guide has be produced by brainstrust and has input from esteemed healthcare professionals, teenagers and parents of children with a brain tumour. This guide is here to help you and young people understand a little more about radiotherapy.
How to have a difficult conversation guide
We know how hard it is to explain brain tumours and hold those difficult conversations.
This guide helps families with approaching these moments. It features tips that will help you 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.
The fatigue toolkit
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.
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 caregivers before they embark on each stage of their journey. Written alongside esteemed clinicians and expert patients and caregivers, 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.
Teen and young adult radiotherapy book
Living with a brain tumour is complex. This is never more so than when you are a teenager or young adult who has been diagnosed with a brain tumour.
This booklet should help you understand the range of radiotherapy treatments that are currently available and why one might be more appropriate for you over another.
Explaining your brain surgery to your children
Using a story as a springboard for a discussion with children is what many people do quite naturally. When children listen to an adult reading a story, whether it be a fairy story or a factual narrative, children will often ask questions because the process of storytelling opens up spaces for conversations. When children have information, that can help alleviate fears and worries.
This resource allows you to talk through your brain surgery with your child in a way that can help them understand the situation and feel comfortable asking questions.
These are easy to read fact sheets to give you key information on topics chosen by our community. When it comes to brain tumours, accessing simple, factual information can be difficult.
There is a great deal of conflicting information available that can leave you feeling confused and overwhelmed. We’ve created the brain tumour Know Hows so you can access concise, clear and impartial information about current topics.
Proton beam therapy guides
Interest in proton beam therapy is growing, especially in the treatment of children with a brain tumour. It is therefore important to have independent, factual information available on the treatment and what it offers. It is also important that you have a balanced view that puts proton beam therapy in context with respect to other treatments. This is crucial for people with a brain tumour (adults as well as children), their caregivers and stakeholders in the public and private sectors.
Behaviour and personality change
We think behaviour and personality change (BPC) is up there with fatigue when it comes to challenge. It is one of those topics for which there is no silver bullet, no magic pill.
It makes everyone feel disempowered, helpless and daunted. We know that up to 60% of people diagnosed with a brain tumour experience BPC, and we also know that there is little support available for this.
Download your free digital copy of the behaviour and personality change resource here and your mood journal template here.
This resource has been produced with people who have the lived experience of what it is like to care for someone with a brain tumour at end-of-life, with leading consultants in palliative care and clinical nurse specialists who are hospice-based.
It will take you through options for stopping treatment through to looking at making decisions for where the patient wants to die. Having as much information to hand as possible allows you to be in control, certain that you are making the right decisions for those concerned.