Education

💼 Supporting Education for Children with Hyperinsulinism

At the Children’s Hyperinsulinism Charity, we work hand-in-hand with families and educational settings to ensure that every child with congenital hyperinsulinism is safe, understood, and fully included in school life. Our goal is simple: to make sure medical and educational needs are met, so that every child can thrive alongside their peers.

We offer a wide range of resources to support families at every stage of the education journey, from nursery to university. These include:

School packs and downloadable guides to help advocate for your child’s needs
YouTube videos featuring expert advice and lived experiences
Teacher training days to build confidence and awareness in schools
Tips for choosing a setting, example care plans, and hypo bag kits
Advice on getting medical needs met, including support from organisations like Contact and IPSEA
Shared care guidance and templates for IHCPs and EHCPs

Whether you’re preparing for your child’s first day at school, navigating transitions, or seeking support in higher education, we’re here for you every step of the way.

Tips for Choosing an Educational Setting

Choosing an educational setting for your child is a big decision, and when you’re navigating the added complexities of congenital hyperinsulinism, it can feel overwhelming. You’re not alone in this journey.

To support you, we’ve created a comprehensive guide packed with practical advice, insights from HI families, and key considerations to help you find a school or nursery that understands your child’s medical needs and nurtures their potential. Whether you’re exploring mainstream schools, specialist provisions, or early years settings, this resource is designed to help you ask the right questions and feel confident in your choices.

Download your guide

Starting School

🏫 Starting School with Hyperinsulinism: What to Look For

Starting school is a major milestone, and for families managing congenital hyperinsulinism, it comes with extra layers of planning and care. To help you feel confident in your choice of setting, here are key elements to look for that support children with long-term medical conditions like hyperinsulinism:

📋 A Robust Medical Conditions Policy

Every school should have a medical conditions policy created by a school’s board of governors and reviewed regularly. This policy outlines the actions that should be taken by the school to ensure your child’s health needs are met and how they are fully included in all aspects of school life, from classroom learning to extracurricular activities.

📝 An Individual Health Care Plan (IHCP)

Also known by different names depending on where you live, this plan is essential for managing your child’s individual and specific needs during the school day. It should detail how hyperinsulinism/hypoglycaemia are monitored and treated, and it must be created in collaboration with your child’s Hyperinsulinism Team. Regular reviews and updates are key to keeping it effective. (See bottom of page for more guidance.)

🤝 Open and Supportive Communication

A strong relationship with the school is vital. You should feel respected, listened to, and able to raise concerns confidently. Ask how the school maintains communication between home and staff, whether through regular check-ins, home/school diary, or designated contacts.

🎓 Staff Training and Awareness

At least two staff members should be fully trained to support and manage your child’s hypoglycaemia. In addition, awareness training should be provided to all staff. Ask who will deliver the training, when it will take place, and ensure your Hyperinsulinism Team is involved. Importantly, training should be prompt and should never rely on parents to train staff.

CHC Resources to navigate your Education Journey

Navigating education with congenital hyperinsulinism can feel daunting—but you’re not alone. Across our website, you’ll find a wide range of resources designed to support families, educators, and young people at every stage of their learning journey.

Video Library

Visit our Charity YouTube Channel for expert-led videos including:

Transitioning from Junior to High School
Educational rights for children with medical needs
Contact Charity School Support
Development and Psychology
SEN Support and getting needs met at school (Coming soon!)

Find our YouTube Channel here

Download pdf information to go with the videos here

Downloadable Guides and Templates

We offer practical documents to help you advocate for your child and work effectively with schools. These include:

Guides on choosing an educational setting
Templates for IHCP and EHCP
Our comprehensive Schools Booklet
HI Team guidance for educators and support staff
Find these below and here.
School Packs
We can send tailored school packs directly to your home or your child’s school. These include printed resources, awareness materials, alert cards and our Chloe the Rabbit storybook for younger children. To request a pack, email enquiries@hyperinsulinism.co.uk.

Post 16 options including starting University:

https://hyperinsulinism.co.uk/post-16-options/

https://hyperinsulinism.co.uk/planning-to-go-to-university/

Resources to Explain Hyperinsulinism:

CHC Booklets co-created with Hyperinsulinism children, young adults and families. Suitable for three different age ranges.

Order a hard copy or download a pdf here

My Guide to Hyperinsulinism

Hyperinsulinism Poster

Chloe the Rabbit has Hyperinsulinism storybook

Alert Cards, Lanyards and Patient Passports

We also have alert cards, medic alert cards and sunflower lanyards: https://hyperinsulinism.co.uk/alert-cards-and-lanyards/

Example Plans

These are examples of instructions and resources for families to use in nursery, primary and secondary school settings.

Please note, they are designed as examples only and you should adapt them to your own individual needs.

Your hospital team should provide an individualised care plan and this should be used to create and inform any plans or instructions.

Resources:

Hyperinsulinism Family Top Tips

1. Be friendly to the school. Try to work together as a team. Ask for a copy of the time table or at least the break and lunch times and try and work my daughter’s regime around the school day where possible.
2. In primary school it is a good idea to contact the head teacher and ask for meetings. We ended up having monthly meetings for a while so that the head could hear any concerns we had or indeed anything that was working well.
3. If your child is getting 1:1 support it is always a good idea to suggest having a few members of staff trained up. We had two TA’s who were both trained to look after my daughter. This was a good idea in case of illness etc and the other one could step in.
4. In secondary school it is generally not the head teacher you deal with but the head of year, pastoral staff member or SENCO. Always make sure you have a constant contact who you can build a relationship with throughout the duration your child is at school. Ask who you should be your contact from the outset.
5. Always involve and ask your specialist hospital team for advice on training school staff and arrange training sessions.
6. Your child will need a care plan in place. Your hospital team will help you with this. Request their input at the earliest opportunity and well in advance of a school start date.
7. In secondary school when your child is more independent it is a good idea for them to carry with them as part of their kit along with the test kit and hypo treatment: daily plan, info sheet with photo, PE plan, Emergency and emergency contact details. Just minimise the plans within the main care plan and use those.
  In secondary school and possibly year 5 and 6 of primary school having a credit card sized laminated card in red is a good idea to be able to hold us in class or produce to a teacher such as our Charity alert cards – which can be found here.

Make sure there is a ‘hypo’ bag near your child at school and supplies dotted around the school.
Hypo Bag
- Blood glucose monitor kit
- Spare test strips
- Snacks / Drinks / (your hypo treatment)
- Copy of emergency plans
- List of emergency phone numbers
- Mobile phone
9. We provided a cheap mobile phone (pay as you go) purely for any emergencies. It was then easy for the 1:1 to phone me wherever she was and did not need to leave my daughter to find a phone.

We have a big box of supplies with lid in the class room. This has the contents listed on the lid and the 1:1 or school are responsible for keeping a check on whether it needs stocking up and checking expiry dates. If possible it’s a good idea to have smaller boxes in the sports hall, the medical room or anywhere else around the school grounds.
Have one A4 sheet with a clear up to date photo of your child on it and their name and year and class details and a brief summary of the condition and perhaps a list of hypo symptoms that could be relevant and emergency contact numbers. This could then be laminated and few around the school. The teacher may like one stuck to his/her desk, there should be one in the staff room, school office and perhaps one in the kitchens.
If you have spoken to the school about any issues or changes to care plan etc it is always a good idea to send an email confirming it, that way there is a clear instruction with no room for interpretation and a paper trail which is good for yourself and the school.

Educational Support, Advice and Getting Medical Needs Met

Across the UK, different nations have different laws and legislation regarding look after children with medical conditions in school.

We recommend the following website for information, please note the websites will either provide more generalised information on getting medical needs met, or may seem quite specific to a particular condition such as diabetes. We have included them as there is a lot of good quality advice regarding the legal rights and responsibilities and what Education Health and Care Plans or Individual Health Care Plans should provide which are relevant to all conditions.

Diabetes UK – this link provides specific legal information relating to England, Scotland, Wales and Northern Ireland

https://www.diabetes.org.uk/guide-to-diabetes/your-child-and-diabetes/schools/diabetes-in-schools-legal-information

Contact Charity – this link provides information on getting medical needs met in England with further links to advice for Northern Ireland, Scotland and Wales.

https://contact.org.uk/help-for-families/information-advice-services/education-start/education-learning/attendance-absence-medical-needs/help-at-school-if-your-child-has-medical-needs/

IPSEA – we recommend for good quality advice and downloadable template letters. They also have a helpline and can help talk you through any concerns of questions you may have. Find them here: https://www.ipsea.org.uk/

IPSEA also provide downloadable template letters to help you secure education for you child if they are going to be away from school for a period or to help you to explain the need for a flexible approach for periods of illness:

https://www.ipsea.org.uk/asking-the-local-authority-to-arrange-alternative-education-model-letter-22

The Children’s Hyperinsulinism Charity’s Shared Care Guide:

A child who has been diagnosed with Congenital Hyperinsulinism (CHI) requires shared care between their specialist team, local hospital, CCGs, and GP as well as the Local Authority.

This downloadable pdf explains their responsibilities and gives you legal guidance and tips to ensure your child’s medical needs are met at school. This document has links to advice for England, Wales, Scotland, Northern Ireland and Ireland.

Educational Health Care Plans and Individual Health Care Plans

Individual healthcare plans

Individual healthcare plans (IHPs) are put in place to make sure your child’s Hyperinsulinism and Hypoglycaemia will be managed while they’re at school. Writing the plan is a collaboration between the school, your child’s Hyperinsulinism Team, you and your child. It should include:

Details of everyone involved in your child’s care, including who to contact in an emergency and who is allowed to administer medication.
What to do in an emergency.
Details of any medications, feeds, regimes and hypo treatments.
Details of where medication and supplies will be stored, who will have access to them, how often they should be checked (e.g. expiry dates, running low) and who is responsible for checking them.
Description of the training that has been given and who was trained.
The signs and symptoms of hypoglycaemia that your child may display. Also important to note down if they do not have symptoms (asymptomatic)
How hypoglycaemia might affect their behaviour or concentration (for example, when they are having a hypo)
Details of how to monitor glucose levels with clear guidance on when this needs to be done.
Details about when your child needs snacks/ food and feeds. As well as any special arrangements or support they may need e.g. they may need to go to the front of the lunch queue.
What extra details need to be put in place around physical education, school trips, activities, play times, or exam /tests.
Details of the support to be provided to help your child catch up e.g. if they miss classes to attend medical appointments or due to hypoglycaemia meaning they have been unable to retain, process or record information. This should include contingency planning around any hospital stays, illnesses, therapy appointments that may disrupt their learning or require time away for school.
Counselling or support to help the child to manage any emotional or social needs.
What plans are needed for school trips (including overnight) and any other school activites that are unusual or outside of the normal timetable.
Anything else you feel is relevant to your child’s care at school

The help a child needs is likely to change as time goes on, and so their IHP will need to change to reflect this.

At the very least it should be reviewed annually but must also be reviewed when management of a medical condition changes or the level of care a child needs changes. So also included in the IHP should be:

when it will be reviewed
who can alter the plan and which parts they can alter
what is the process for reviewing the plan

Once the plan is in place and the child (if applicable), parent/carer, school and Hyperinsulinism team are happy with it, the parent/carer (and child, where appropriate) should sign it, as should relevant school staff and a healthcare professional

We recommend the following websites for details on EHCP assessments, plans and what they should contain:

Contact Charity: https://contact.org.uk/help-for-families/information-advice-services/education-start/education-learning/ehc-plans-assessments/what-is-an-ehc-plan/

Cerebra Charity downloadable parents guide: https://cerebra.org.uk/get-advice-support/education/

The Children’s Hyperinsulinism Charity downloadable guide:

Some children with Hyperinsulinism will require a EHCP to ensure any additional educational needs are met as well as medical needs, this document outlines the differences between Individual Health Care Plans (IHCP) and Educational Health Care Plans (EHCP)

A special thank you to Michelle Walkley (former CHC Co-Chair) Steve Broach (Barrister) the HI Specialist Teams (Manchester, GOSH, Alder Hey) for their valuable input that has enabled us to produce our school guides and booklets.