Children's Hyperinsulinism Charity

Courage Hope Inspiration

Self Advocacy

What is Self-Advocacy?

The Children’s Hyperinsulinism Charity is helping children and young adults to gain the knowledge they need to understand Hyperinsulinism and other co-existing conditions they may have. We are doing this by developing resources aimed at different ages and stages of the HI journey.

Why?  By understanding the condition and being able to explain it to others, we start to build key skills of confidence and communication. We also enable children to be involved in their own medical health and well-being, so they can be included in appointments, choices, and decisions.

  1. Learning about your medical condition/s
  2. Learning about your rights, accommodations and choices.
  3. Developing confidence to speak up and ask questions.
  4. Taking control and making decisions

Many children and young adults with Hyperinsulinism will need to continue with medical care as they transition from paediatrics to adult services. This can be overwhelming and scary. A time when they can get lost in the system, referrals lost and where everyone expects them to have the organisational skills, communication skills and confidence to independently manage their own health and well-being. 

The Children’s Hyperinsulinism Charity recognises for children to get to this stage, they need to be prepared and equipped with the skills and confidence this requires.

For some children this may be more difficult and for children with neurological and neurodevelopmental conditions, they may require more support, tools and resources. 

We also need to have an understanding and an appreciation of the challenges they may face such as communication, anxiety, sensory issues, memory, processing and social challenges.

By starting at a young age and providing resources and tools we hope to help every child and young adult with Hyperinsulinism to be their best possible advocate.

We are therefore networking with other Charities and Organisations as well as producing our own resources which will cover:

  • Communication Skills and Tools
  • Managing Medical Anxiety
  • Understanding Hyperinsulinism
  • Downloadable posters and literature to help explain Hyperinsulinism to others.
  • Emotional well-being
  • Practical Advice on Transitions, Starting University and Managing Adult Services
  • Hospital Passports, Journals and All About Me
** Hyperinsulinism Poster and My Guide to Hyperinsulinism for resources, designed as show and tell resources for children to tell their friends, family and classmates all about Hyperinsulinism  – click on them below to download **

‘My Guide to Hyperinsulinism’

Click on image to download

Designed for children to explain Hyperinsulinism to their friends, family and class mates.

Take it along to your medical appointments to help explain Hyperinsulinism.

Let us know how you have used this resource!

My guide to Hyperinsulinism FINAL SD

Hyperinsulinism Poster

Hyperinsulinism A4 PosterThis A4 poster has been designed to help you to communicate Hyperinsulinism to your friends and classmates.

Hyperinsulinism Poster Don’t forget to share with us how you have used this resource!

Click this link to download:

Hyperinsulinism Poster

‘My Hospital Appointment’

Designed for younger Hyperinsulinism children this downloadable A4 pdf, allows them to start preparing for their appointment. With each section designed to star some self-advocacy skills:

Screenshot Hospital Appointment CHI
Click to Download
  1. How I feel – allowing your child to express their feelings and to allow you to discuss this with them if they wish. This also works well with the ‘zones of regulation’ resource in the children’s resources section, which can give your child some options of activities they can do to manage their feelings.

  2. About Me – allows your child to write down what they want the medical team to know about them.

  3. What to take – helping your child to plan ahead and think about what they may wish to take with them, this could be extended to think about what they may need to take to manage their medical needs e.g. hypo treatments, blood glucose kit, snacks.

  4. What do I want to know – deliberately open ended for your child to think about what they wish to know, whether its questions for the medical team, concerns they may have, or how long it will take, this helps children to start to communicate, what is important to them.

  5. CHI Superhero – allows your child to feel proud! Alongside the downloadable certificate in our children’s resources section, this is the chance to say well done. Attending appointments can be so difficult for children with Hyperinsulinism for a variety of reasons and we want to acknowledge how fantastic they are!

Hospital Passports

We have partnered with Cambridge Rare Disease Network to bring you a Hyperinsulinism patient passport.

These fold down into a lanyard size and can be used to help communicate to new medical professionals or settings. You can also use them to note down any co-existing medical conditions or sensory considerations.

To order click on the link below – you will receive a passport (please allow a day or two for the email) from CamRARE with a guide on how to fold them. 

Sign up here & select The Children’s Hyperinsulinism Charity:

CAM Rare Passport CHI
Click to View