Our 6-year-old daughter has been battling episodes of Ketotic Hypoglycemia for the last two years. These episodes are unpredictable and terrifying for her and for us as parents. We've had numerous occasions where we’ve woken up to find her unconscious because her sugar levels had dangerously dropped overnight. It is a heart-wrenching experience that no parent should ever endure.

Her specialist has recommended the use of Continuous Glucose Monitoring (CGM) devices to help manage this condition effectively. However, despite the necessity, these devices are not available on the NHS for children with conditions like Ketotic Hypoglycemia; they are currently reserved for diagnosed diabetics due to cost restrictions. As a result, we are compelled to spend £150 each month out-of-pocket just to monitor her glucose levels and prevent potentially life-threatening hypos.

Ketotic Hypoglycemia isn’t the only metabolic disorder where extreme and unexpected drops in blood sugar can occur in children. Many families across the UK face similar struggles, unable to afford the vital support CGMs provide. Denying access to these life-saving devices based on strict diagnoses rather than medical necessity is putting children at risk and places immense financial pressure on families already dealing with stress and worry.

In light of these challenges, we urge the NHS to reevaluate and expand the current guidelines for Continuous Glucose Monitoring. Including children with metabolic disorders like Ketotic Hypoglycemia will ensure they receive the necessary care to live healthy, safe lives without the looming fear of the next unpredictable hypoglycemic episode.

By making these changes, the NHS would not only be investing in the well-being of these children and their families but potentially reducing overall healthcare costs by avoiding emergency interventions and hospitalisations.

Sign this petition to advocate for the necessary changes to NHS guidelines, ensuring all children in need have access to critical glucose monitoring – providing peace of mind and safeguarding our children’s futures.