Bold truth: a family is selling cherished belongings just to afford life-saving medicine for their baby. But here's where it gets controversial: should a child’s health depend on a family's ability to pay? And this is the part most people miss: systemic gaps in funding that leave families scrambling to secure essential treatments.
A Guernsey family says they have had to part with personal belongings to raise the money for their nine-month-old son Arnold’s medicine. Mother Kiely Luscombe and her partner feel abandoned after discovering that Arnold’s prescribed medication costs £312.70 per bottle, a monthly expense that isn’t funded on Guernsey prescription lists.
Luscombe shared her overwhelm: “I just feel lost. My partner and I have tried so much and we’re at the end of a road and we don’t know who to turn to.” Teena Bhogal, Chief Pharmacist, emphasized that no family should feel alone in seeking care for their child. She added that clinicians can consult the Prescribing Support Unit (PSU) for guidance and help identify alternatives or, if appropriate, consider adding the medication to the prescribing list.
Arnold’s health issues began with vomiting and stomach pain from just three weeks old, culminating in an October 2025 transfer to Southampton General Hospital. He was diagnosed with dysmotility and hypermotility—conditions that disrupt digestion, making it hard to retain food and establish regular bowel movements. Luscombe described the ordeal: Arnold’s pain was so severe he needed constant support, his abdomen was painfully tight, and he frequently arched his back.
The family initially received Mebeverine at Southampton General Hospital, then returned to Guernsey. The medicine helped briefly but soon lost effectiveness, prompting dose increases and a rapid depletion of supply. They were surprised to learn the ongoing cost would be £312.70 per month. Arnold’s only viable form is an oral solution, typically prescribed for children aged three and up, and it isn’t funded by the States of Guernsey.
Bhogal noted that the PSU has not yet received requests for assistance for this specific medication and urged clinicians in similar situations to reach out for support.
Luscombe painted a stark picture of the financial strain: one bottle per month equates to about £3,500 a year. With four to six children between the couple, the cost is untenable. In an attempt to stretch each bottle, Arnold’s dosage was reduced, but his condition worsened—his stomach swelled, he vomited, and he couldn’t pass stools, severely diminishing his quality of life.
Asked why it costs so much for a basic life-improving treatment, Luscombe voiced a plea many families share: she wants a resolution that doesn’t hinge on wealth. Arnold’s father, who also has a chronic illness, has returned to work, while Luscombe remains at home caring for their son. She says she’s willing to do whatever it takes to obtain the medicine, but the family worries about months of waiting for disability support, which could push them into a financial cliff.
Luscombe concluded with a sobering message: no family should be refused medication because they cannot afford it. She and her partner remain determined to fight for their son’s wellbeing, while hoping for faster, more equitable access to essential treatments.
What do you think should change to ensure families aren’t forced to choose between medicine and financial security? Should healthcare systems provide faster, broader support for high-cost medications, even when there isn’t a perfect funding pathway yet? Share your thoughts in the comments.
