Resources for adults 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 your condition.

General advice and support

 

What is Spina Bifida?

An introduction to spina bifida 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 Spina Bifida?


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


'Spina Bifida 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.  

Order your Spina Bifida and Me Card


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


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


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


 

Employment resources

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

Important Information About Bladder Cancer

People with spina bifida may be at an increased risk of developing bladder cancer.  Click here for details, and for useful information to share with your GP.

Click here for information about bladder cancer


Letter for General Practitioners (GPs)

Want to help your GP learn more about spina bifida?  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


Pregnancy for Women With Spina Bifida

Many women with spina bifida will have a safe and successful pregnancy, may need to plan more carefully than other women. Our advice contains information on how to get ready, and what to expect if you decide to try for a baby.

Read information online


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.  We've designed an easy read version for adults with learning impairments which you can fill out online and save to your mobile device for ease of access.

Complete your hospital passport

Easy read hospital passport


Medical Professionals - Who's Who?

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

Find out more about the role of professionals


Medical Appointment Checklist

If you have a hospital or GP appointment, it can be difficult to remember and organise your information quickly. Members tell us this has become especially difficult with more and more appointments taking place over the phone, that's why we’ve prepared these notes to help make it easier to prepare.

Our tips on preparing for medical appointments

 

 

 
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