Preparing for Medical Procedures

Families have reported concerns around how distressing medical procedures can be for children and young people with Hyperinsulinism. Highlighting the following as being particularly challenging:

1. Medical procedures such as bloods being taken, cannula insertion and surgery.
2. Medical tests such as EEG’s and ECG’s
3. Injections, CGM changes, PEG changes.
4. Hospital admissions – controlled fasts.

For some children with Hyperinsulinism, medical anxiety can have a detrimental impact on their emotional health and wellbeing. It can also impact on the wider family as parents and caregivers try to figure out the best way to support them.

Several Issues have also been identified as being causative to anxiety:

1. Loss of control – the child feels they have no say in what is happening to them.
2. Sensory Processing – the child may struggle to tolerate touch, sound, busy environments.
3. Communication – the child may need support to communicate, and medical professionals may need to adapt their communication style.
4. Lack of Accommodations and Resources – the child may need extra support/time or resources which are not available.

How can the Charity help?

We are developing a range of resources to support emotional and mental health and wellbeing. In addition, we will provide resources aimed at helping children to have a good understanding of Hyperinsulinism, this will help to build confidence, develop the skill of self-advocacy, and help them to feel in control of their medical care. All of which have been proven to alleviate some of the anxiety they may feel, we will also add hospital passports and communication resources.