Life Stages
Built with HI Families
Life Stages
Support for every step of your HI journey.
Hyperinsulinism affects families differently at every stage of life. This page brings together trusted organisations that support families through the early days, growing up with HI, and the transition to adulthood.
newly Diagnosed
Ronald McDonald House UK helps families by providing free accommodation at or near 14 specialist children’s hospitals in the UK, so families are just minutes from their child’s hospital wards.
If you wish to use our facilities, please speak to a member of the medical team on your child’s ward. All referrals for our services are made directly through the hospital.
Alongside providing overnight accommodation, we’re also delighted to welcome families to use our communal facilities through our Day Pass Programme, where they can come to the House and make use of our communal kitchen, lounge, and laundry.
Child patients can additionally visit the House through our Medical Pass Programme, giving them some much‑needed respite away from the ward. Please note that this must be approved by the medical professional responsible for your child’s care.
 |
 |
A Hyperinsulinism diagnosis can bring a lot of information, decisions, and emotions all at once. Many families tell us they weren’t sure where to turn in those early days, so we want to make it easier to find clear, trusted support from the start. The Children’s Hyperinsulinism Charity provides Newly Diagnosed Packs and a welcoming support group so families feel connected from the start and never alone.
💡CHC Project: We are developing new resources to support parents at the point of diagnosis, covering practical information, lived experience and emotional wellbeing.
|
|
Bliss exists to give every baby born premature or sick in the UK the best chance of survival and quality of life.
We offer emotional and practical support to empower families and equip them with the knowledge and skills they need to provide the best possible care to their baby, for however long they live and for however long their stay in neonatal care.
We provide information about caring for premature and full-term sick babies at every stage of their hospital journey, and after they have gone home.
Through our network of dedicated volunteers we provide support via video call and email support, meaning families have access to practical information and a listening ear when they need it the most.
Feeding can be challenging for many babies and children with Hyperinsulinism, especially in the early stages when hospital stays, treatments and tube feeding can disrupt normal hunger cues and routines. Feeding difficulties may affect sucking, swallowing, appetite, sensory development and confidence with food, and often have medical, developmental and emotional causes. We’ve gathered trusted information to help parents understand feeding issues in HI
|
|
Dad Matters supports dads and dads-to-be through the first 1001 critical days, helping fathers build strong relationships with their babies, support their partner’s wellbeing, and look after their own mental health. Delivered through local Home-Starts across the UK, Dad Matters provides, antenatal and perinatal engagement and education, one-to-one peer support, and signposting for fathers and families.
nursery and school age
Well at School is a resource that helps schools support students with medical and mental health conditions so they can fully engage in education. We also provide information for young people, parents, and carers. We work in partnership with health professionals, students and teachers to ensure our content is relevant and up to date. What we offer:
For young people: social media advice, Exams, Bullying, what to think about when going to university or an apprenticeship, etc.
for teachers’ advice for schools, supporting siblings, staff well-being, etc. For parents/carers’ understanding of the law, EHCP and IHP explained, glossary, and more.
Starting school can bring new questions about safety, independence, and how to help staff understand your child’s needs. We’ve created clear, practical resources to support families and education settings at every stage.
Education Support:
Guidance for families:
Education
Guidance for schools:
Teaching Staff Training
Children & Young Adults explaining Hyperinsulinism
|
|
IPSEA is a national charity that provides free, independent legal advice and support to families of children and young people aged 0 -25 with special educational needs and disabilities (SEND) in England.
By law, children and young people with SEND have the right to an education that meets their individual needs. But too often, families face a range of barriers when seeking the support their child is entitled to.
We offer a unique range of services to help children and young people with SEND get the education they are entitled to by law.
Online legal guides, resources and template letters: Learn about the law and how to enforce the rights of children and young people with SEND with our free legal guides.
School‑age children with HI may have questions about hospital visits, talking to others about their condition, or managing worries around medical procedures. We’ve created practical, child‑friendly resources to help build confidence, support emotional wellbeing, and encourage children to understand and communicate their needs in a way that feels safe and empowering.
Preparing for Medical Procedures
https://hyperinsulinism.co.uk/preparing-for-medical-procedures/
Wellbeing Resources
|
|
teens and adults
Post 16 Options:
Becoming a young adult with CHI brings new questions about independence, education, work, and managing your own health. We’ve created resources to support young people as they plan their next steps, from choosing post‑16 options and preparing for university, to finding practical ways to cope with CHI day‑to‑day. These tools are designed to help young people feel informed, confident and supported as they move into adulthood.
Education & Next Steps
Post 16 options:
|
|
The Mix is the UK’s leading digital support service for young people under 25. Through expert advice, online community spaces, counselling, peer support and self-help tools,
The Mix helps young people navigate challenges ranging from mental health and relationships to money, housing and education. All support is free, confidential and available online.
Moving from paediatric to adult healthcare is an important step for young people with CHI. Transition works best when it starts early and gives young people the chance to build confidence, understand their condition, and take a more active role in their care.
We’ve brought together guidance to help families prepare, from understanding what transition involves, to developing independence, navigating new services, and knowing what support is available.
|
|
bee rating = HIVE member
= HI Family Recommended
Help Grow the HIVE
Know an organisation that helped your family?
“Every organisation in the HIVE has been checked by our team or recommended by HI families.”
