Wellbeing Support
Wellbeing Support for Parents and Carers
A variety of factors may impact on your emotional health and well-being. Many families find that the time of diagnosis has been extremely stressful. They may have seen their baby suffer from seizures, long hospital stays, procedures, tests and sometimes the need for intensive care.
Emotions can range from a sense of relief to getting some certainty from a diagnosis, but with such a rare condition, this can be missed with worry about what it means for your baby and family. Hyperinsulinism and the hypoglycaemia it causes adds another level of stress, anxiety and frustration as you cope with the challenges it brings and the medical management it requires.
Throughout your Hyperinsulinism journey, it becomes essential to remember to look after your own health and well-being and to seek support. Below are some guides, resources and links:
Cerebra Charity
Emotional & Mental Health Guide
Looking after your own wellbeing is one of the most important things you can do for the wellbeing of the whole family. You are the most important person in your child’s life, championing their wellbeing needs every day. For this to be sustainable, it’s really important that you find ways to look after your own wellbeing needs too.
We know this is not always easy, so we’ve written this guide to provide some information, resources and guidance to help you find ways to focus on your own wellbeing and happiness, while caring for your child. It will cover different aspects of your wellbeing that might need extra attention. There is a personal wellbeing plan (link below) provided that you can complete while reading this guide to help you document and action some changes that you think are likely to benefit you.
This guide will be useful for for anyone with caring responsibilities for a disabled child.
https://cerebra.org.uk/download/my-wellbeing-plan/
Carers UK – Caring can be very tiring, putting a lot of demands on your physical and emotional energy. It can be easy to forget your own health needs. Here are some key topics to help you.
https://www.carersuk.org/help-and-advice/your-health-and-wellbeing/looking-after-yourself/
Fathers of disabled children: supporting their wellbeing. Information and resources to support fathers of a disabled child in their parenting role
https://warwick.ac.uk/fac/soc/cidd/familyresearch/fatheradvisorygroup
The Children’s Hyperinsulinism Charity
Supports families with Hyperinsulinism and hypoglycaemia in a number of ways.
Support Group – helping you to connect with other families in a safe environment to share experiences: https://www.facebook.com/groups/CHCharityUK
Family Fun Days and Conferences: bringing families together, to give them an opportunity to meet in person and for Hyperinsulinism children to connect and build friendships.
For more details email: enquiries@hyperinsulinism.co.uk