Adrenal insufficiency, steroid sick day rules and the paediatric endocrine nurse.

Clinical governance processes are important for improving patient care. Patients with adrenal insufficiency are at significant risk if they have an adrenal crisis and require steroid therapy. Families should receive education on managing illness or stress, that is, steroid sick day rules. Most of this education is delivered by children's nurses. Two local cases of mortality related to adrenal insufficiency were reviewed and a questionnaire audit was undertaken to compare the steroid sick day rules education provided to patients and their families with published standards. Most training (75%) was delivered by nurses. Most families/patients (94%) had received written information on oral dosing for steroid sick day rules, and were confident about when/how to double up oral steroid doses (78%). Fewer families recalled being given written information about the emergency hydrocortisone injection (53%), and fewer were confident about how to give the injection (46%). Several important changes and modifications to clinical practice have been implemented in response to the clinical governance findings. These include setting up notification 'red flags' on patients' electronic records and holding specialist family teaching sessions on steroid sick day rules.