Resources for people caring for someone with spina bifida

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

General advice and support

Learning and Behaviour (Myelomeningocele)

Myelomeningocele is a type of spina bifida that affects the development of the brain and spinal cord. This information sheet looks at how differences in brain development in spina bifida can affect thinking, learning and behaviour.

Read information online

What is Spina Bifida?

An introduction to spina bifida 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 Spina Bifida?

New Parents Pack

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

Find out more and download New Parents Pack

'Spina Bifida and Me' Card

With your child's support, personalise this card and carry it with you to help explain what symptoms your child has, and what those around them can do to support.  

Click here to order a Spina Bifida and Me Card

Shine's Specialist 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 Specialist Services

Bella Bear Books

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

Download Bella Bear books

Toilet Training

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

Read information online

Prenatal Surgery

Prenatal surgery, to close or cover a spina bifida lesion before birth, can sometimes be carried out in certain circumstances. There are significant risks for both mother and fetus, the benefits are variable and impossible to predict, and the long-term effects are unknown at the present time.

Read information online

Shine Health Direct

Shine Health Direct is a home delivery service exclusive to Shine members, offering discreet and efficient delivery of urology and stoma products, as well as your prescription medications.  For more information and details of how to join, read our leaflet below.

Download Shine Health Direct leaflet

Healthcare resource

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

How your bladder works

This video captures the knowledge of specialist Continence Nurses providing an easy to follow guide to bladder function, and why it's so important to keep it in good shape!

Watch 'How your bladder works' video

Medical Professionals - Who's Who?

Your child may be referred to a wide variety of professionals throughout their life, each with specific responsibilities and a unique role to play in supporting their health and wellbeing, learn more about them here.

Find out more about the role of professionals

Medical Appointment Checklist

If your child has a hospital or GP appointment, it can be difficult to remember and organise their information quickly. We’ve prepared these notes to make it easier to prepare.

Our tips on preparing for medical appointments

Education resources

Physical disability in an educational setting

Answers to some frequently asked questions about supporting children and young people with physical disabilities in mainstream settings.

Read information online


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

Information for schools

These short films contain lots of helpful information for parents and schools on some of the challenges of school life faced by children with spina bifida

Click here to watch videos



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