Planning to go to University
It is good to consider and plan ahead to manage Hyperinsulinism and the hypoglycaemia it causes before moving away from home:
Managing Hyperinsulinism – Developing Self-Advocacy skills
As you start to plan for living independently, here a few things you may wish to think about:
- Are you still under paediatrics care? If so, it may be good to discuss transition to adult service with your Hyperinsulinism Specialist team and/or your local healthcare team. Aim to start this around a year before you may be moving away to enable you to familiarise yourself with the process and new team.
- Look at how involved you are in your management of Hyperinsulinism and Hypoglycaemia, could you attend consultations alone? Or attend part of the appointment alone, or take more control of the appointment? Could you order repeat prescriptions? book appointments. These steps are never easy, and it can be hard to feel confident, look at some of our resources that may help you to communicate, organise and plan ahead.
- Make sure you have the details and contact details noted down of your Hyperinsulinism Specialist Team and/or local healthcare team, ask them how you should contact them whilst you are at university e.g. get email addresses.
- Ask your healthcare team for copies of your current treatment plan, medications and any recent test reports, this will be helpful when registering with A GP at university.Find out who is responsible for medical care at your university. Ask them for details on how to register with the GP who may be on campus or nearby.
- Find out the medical care that is around your university e.g. where the nearest late-night pharmacy is, out of hours support, hospital A&E.
Applying for University and Accessing Support
On your UCAS application form tick the box for ‘disability’ this will let the university student support team know that you have a long-term health condition, and they can be alerted that you may require additional support.
CHI Superhero Tilly’s Top Tip!: “
“EHCPs end when you go to university but you can speak with the well being team to get an ILP in place. What is an Inclusive Learning Plan (ILP)? Inclusive Learning Plans (ILPs) specify reasonable adjustments for the programme of study, including assessments, and exams. You will usually be asked to provide medical evidence. You should contact Student Support and Wellbeing as soon as possible if you think you might need adapted arrangements for exams.”
Even though your Education, Health and Care Plan (EHCP), will no longer apply when you go to university. It is a good idea to share your plan with the university you want to go to. This will help them understand your needs and make sure reasonable adjustments are put into place.
For more information and detailed guidance on your rights to reasonable adjustments and accessibility: https://www.disabilityrightsuk.org/disabled-students-helpline
Accomodation:
CHI Superhero Tilly’s Top Tip!
“What about accommodation, you may need to view the accommodation which doesn’t always happen as you may need extra room to store the medical supplies, most rooms only have showers there are a few that have baths, but you have to apply for these through a different route.”
Before you decide on a University it is worth asking to see a copy of their policies, which will contain details of how they put in place any reasonable adjustments and access arrangements. As well as ensuring you have notified the University in advance of any accessibility issues, equipment, assistive technology or adaptations you may require.
Financial Support
Consider applying for Disability Students Allowance DSA:
Disabled Students’ Allowance (DSA) provides you with funding for extra study-related costs due to a mental health or long-term health condition, learning differences like dyslexia or ADHD, or any other disability. Depending on your needs, it could pay for a specialist mentor, suitable equipment, or help with disability-related travel costs.
More details here: https://www.thecompleteuniversityguide.co.uk/student-advice/finance/disabled-students-allowance-guide
Medication
Consider any storage issues you may need for your medication e.g. a secure/lockable cupboard. sharps bin, mini fridge. Ensure your medication is labelled and check expiry dates. Make sure any hypo treatments and emergency plan are kept somewhere it can be easily accessed and consider other alert schemes such as our alert cards or medic alert.
Supplies
Make sure you have ordered prescriptions and have everything you require. For example:
- Sharps box
- Blood glucose meter and test strips
- Lancing device and lancet
- Hypo kit- eg. Glucogel and snacks
- A diary, journal or app to record your glucose levels
- Emergency contact details. Most smartphones allow you to record a medical condition to show on the ‘emergency’ button on the lock screen. On an iPhone, this is edited in the Health app, under Medical ID. On an Android, you can edit the owner information in your settings
- Hyperinsulinism and Hypoglycaemia alert card e.g our Charity one or MedicAlert
- Hospital /Patient passport.
Cambridge Rare Disease Network (CamRARE) have partnered with The Children’s Hyperinsulinism Charity to create a hospital passport which folds down into a lanyard sized document, you may find this a useful resource to travel with. To get one please click on the link, when completing the form, select our Charity and it will be emailed to you as a downloadable pdf https://forms.gle/ggp9afsaH8p8Ezd46
The Children’s Hyperinsulinism Charity
We recommend joining our support groups and taking down our contact details so you can access our support whilst away:
Support Group: https://www.facebook.com/groups/CHCharityUK
Youth Group: https://www.facebook.com/groups/HIYACHC
Email: enquiries@hyperinsulinism.co.uk
Tel: 07495 693361