Resources for adults 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 your 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

What is Hydrocephalus?

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

Download What is Hydrocephalus?


What is Normal Pressure Hydrocephalus?

A leaflet about NPH containing essential information. Perfect if you want to learn more about NPH and to help those around you to understand it better. Copies can also be posted to you on request.

Download "What is Normal Pressure Hydrocephalus?" leaflet


Shine's Hydrocephalus Services

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

Download Shine's Hydrocephalus Services


'Hydrocephalus and Me' Card

Personalise this card and carry it with you to help explain what symptoms you have, and what those around you 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


One Page Profile

A useful summary to share with the people you interact with which will help them get to know you better, and support you in the ways you prefer.  You can print it out, or complete online and save to your device.

Complete your one page profile


Housing Adjustments Passport

Capture information about the adjustments you require to live independently in one simple, easy to use place.  This document can be shared with your housing provider and regularly reviewed to ensure the necessary adjustments are monitored and maintained.  You can print one out, or complete it online and save to your device.

Complete your housing adjustments passport


'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


Employment resources

Information for Employers

This leaflet contains lots of useful information to help employers understand how they can support and empower you in the workplace.

Download Information for Employers


Hydrocephalus and Shunts - What you need to know

Does your employer know what to do if a shunt malfunction occurs? This useful printable web page contains health and safety tips, what to look out for, and what action to take if they suspect shunt malfunction or similar has occurred.

Click here for information about hydrocephalus and shunts


Employment and Disability

Our website has lots of useful information to help employers understand how they can support and empower you in the workplace.

Read information online


Workplace - Reasonable Adjustments Passport

It's not always easy to talk about your health, mobility requirements or specific needs in the workplace but with our workplace passport, you'll be able to record and review any adjustments made, and keep track of any changes required in one simple to use document - you can print it out, or fill it out online and save to your device.

Download or complete your workplace passport


Welfare and Benefits Advice

You may be entitled to benefits such as Employment Support Allowance, Working Tax Credit or Direct Payments whilst you are in employment. We have compiled some useful information for you here and if you need support you are welcome to contact our Disability Benefits Advisory Service for assistance.

Click here for welfare and benefits advice


 

Healthcare resources

Hydrocephalus and Shunts - What you need to know

Do your friends, family, employer or social group know what to do if a shunt malfunction occurs? This useful printable web page contains health and safety tips, what to look out for, and what action to take if they suspect shunt malfunction or similar has occurred.

Click here for information about hydrocephalus and shunts


Letter for General Practitioners (GPs)

Want to help your GP learn more about hydrocephalus?  This letter can be personalised and added to your file - it explains more about your condition and the health implications they need to be aware of.

Download letter for GPs


Shunt Alert Card

This personalisable medical alert card contains useful information for you, your doctor and any medical staff who may need to care for you in the event of an emergency.

Order your shunt alert card


Hospital Passport

Should you ever be taken into hospital, a hospital passport contains all the key information professionals will need to give you 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

 

 
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