Resources for people caring for someone with hydrocephalus

Shine offer a range of useful resources and publications to help you learn more about hydrocephalus, and to help you communicate with others about the condition.

We also have resources available if you'd like to fundraise for Shine during Hydrocephalus Awareness Week, click here for more information.

General advice and support

'Get Inside My Head'

This short animation offers an easy to understand explanation of the condition, perfect for helping others to understand more about hydrocephalus.

If you'd like to share this video with someone, you can copy and paste this link into an email or text message -

What is Hydrocephalus?

An introduction to hydrocephalus containing essential information. Perfect if you want to learn more about the condition, or help those around you to understand it better.

Download What is Hydrocephalus?

New Parents Pack

Shine’s resource pack for parents and families of babies with hydrocephalus covers everything you need to know during those important first few months.

Download New Parents Pack

Your Child and Hydrocephalus

A comprehensive look at the condition covering everything you need to know at every key life stage from birth to 11 years old. Perfect for parents and professionals.

Download Your Child and Hydrocephalus

'Hydrocephalus and Me' Card

Personalise this card and carry it with you to help explain what symptoms you have, and what those around you at school, college or university can do to support you.  

Watch this short video for instructions on how to use your card, and ideas for what to include on it.

Order your Hydrocephalus and Me card

Shine's Hydrocephalus Services

Find out about the specialist support Shine offer throughout your child's life.  As well as supporting you directly, Shine can also work with your friends, family or connected professionals in health, education or social care.

Download Shine's Hydrocephalus Services

The Abilities in Me - Hydrocephalus Edition

Help your child to understand more about their condition, with the Hydrocephalus edition of the successful 'Abilities in Me' series by author Gemma Kier.  Watch our video below, or order your copy today, with a share of the profiles kindly donated to Shine.

Benny Bear Books

Help your child learn about their condition through the adventures of Benny Bear.  Through these fun engaging tales, your child will discover all about hydrocephalus and what makes life better at school and at home.

Download Benny Bear Books

Toilet Training

Learn more about the unique challenges children with hydrocephalus can face, and how you can help them to master this all important skill.

Read information online

'Hydro and Me' Website

Developed by Integra LifeSciences, Hydro and Me is a website containing information about the condition, as well as useful features including a kids corner, and a centre locator tool should you need support with an Integra shunt valve whilst travelling.

Visit the Hydro and Me website


Healthcare resources

General Shunt Malfunction Alert

Do your child’s friends, family or social group know what to do if a shunt malfunction occurs? This Education Medical Alert Leaflet contains health and safety tips, what to look out for, and what actions to take which are applicable for anyone who has caring or supervision responsibilities for your child.

Click here for our General Shunt Malfunction Alert

Shunt Alert Card

This personalisable medical alert card contains useful information for your child's doctor and any other medical staff who may need to care for them in the event of an emergency.

Order your shunt alert card

Hospital Passport

Should your child ever be taken into hospital, a hospital passport contains all the key information professionals will need to give them the best possible care.  You can fill it out online and save it to your mobile device for ease of access.

Complete your hospital passport

Easy read hospital passport


Education resources

Shunt Malfunction Alert for Schools, Colleges and University.

Does your child's school know what to do if a shunt malfunction occurs? This useful guide contains health and safety tips, what to look out for, and what action to take if they suspect shunt malfunction or similar has occurred.

Download shunt malfunction alert for education staff

Letter for schools

Want to help your child's school learn more about hydrocephalus?  This letter can be personalised and includes an introduction to the condition as well as details of how Shine can support them to empower your child throughout their education.

Download letter for schools

Tips for Teachers

Share this link with your child's teacher and give them access to lots of useful advice on how to provide the best possible learning environment for children with hydrocephalus.

Click here for our tips for teachers

Education Passport

Complete, along with your child, to capture and communicate their needs in one simple to use document which can be shared with their current or proposed education setting.  You can print one out, or complete it online and save to your device.

Complete an Education Passport

Hydrocephalus and Learning Leaflet

A guide for children and young people with hydrocephalus - with useful tips and ideas to help you at school

Download Hydrocephalus and Learning

Hydrocephalus and Learning Webinar

So we can measure the impact and benefits of this resource, please complete the short form below so that we can learn about where and how they are being used to help with our evaluation.

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Shine would like to contact you to see whether you found the webinar useful, and to discuss what further resources we could develop to support you in the future. If you are happy to be contacted, please tick the box below.