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.

Understanding Hyperinsulinism

•  Hyperinsulinism Booklets co-created with HI children, young adults and families. Three booklets designed for ages 3-6, 7-12, 13+ (approx age ranges) explaining Hyperinsulinism and helping confidence, self-esteem and well being.
• My Guide to Hyperinsulinism a simple way to explain Hyperinsulinism 
• Downloadable HI poster – great for show and tell with school friends
• Chloe the Rabbit has Hyperinsulinism Storybook – Follow Chloe and find out what it is like to have Hyperinsulinism. Find out about what this means for her day to day; for example blood sugar testing and dealing with hypoglycaemia. Also follow her as she goes to hospital for a controlled fasting test. A fun rhyming story with bold and colourful pictures. Perfect for younger children who have Hyperinsulinism or their parents, siblings and peers. Included in school packs or they can be purchased direct from Amazon.

Emotional Wellbeing and Communication

• Communication Mat – a downloadable mat that can help you child to make choices and communicate during appointments.
• Emotional well-being – resources designed to help children relax and unwind
• Older Children/ Young Adults – Coping with Hyperinsulinism

Preparing for Appointments

• Preparing for Medical Procedures and Managing Medical Anxiety
• My Hospital Appointment
• Hospital Passports – see below to order your CamRARE/CHC Passport
• My well-being journal

Older Children/Young Adults head to our Young Adults Section to find information on

• Transition from Child to Adult Care
• Well-being
• Planning to go to University 
• Post 16 options