Imagine being forced to sell your family’s belongings just to afford life-saving medication for your baby. This is the heartbreaking reality for one Guernsey family, who are now sharing their desperate struggle to provide for their nine-month-old son, Arnold. But here’s where it gets even more devastating—despite their tireless efforts, they’re facing a staggering £312.70 per month for his medicine, a cost that’s pushing them to the brink. And this is the part most people miss: the medication Arnold needs isn’t covered by Guernsey’s prescription funding, leaving this family feeling utterly abandoned.
Mother Kiely Luscombe and her partner describe feeling ‘let down’ and ‘lost’ after discovering the exorbitant cost of Arnold’s treatment. ‘We’ve tried everything,’ Luscombe shared, ‘but it feels like we’re at a dead end. We don’t know who to turn to.’ Their story isn’t just about financial strain—it’s about the emotional toll of watching their baby suffer. Arnold has been battling dysmotility and hypermotility since he was just three weeks old, conditions that make it nearly impossible for him to keep food down or have regular bowel movements. ‘He was in so much pain,’ Luscombe recalled. ‘His tummy was so tight, he was constantly arching his back.’
Here’s where it gets controversial: While Teena Bhogal, Chief Pharmacist, assures families that support is available through the Prescribing Support Unit (PSU), Luscombe’s case raises questions about why such critical medications aren’t already funded. Bhogal stated, ‘We don’t want families to feel alone,’ and encouraged clinicians to reach out for assistance. But if the system is designed to help, why are families like Arnold’s slipping through the cracks? Is it fair to leave parents in a position where they must choose between their child’s health and financial stability?
Arnold’s initial medication, Mebeverine, provided temporary relief, but its effectiveness waned over time. Increasing the dosage only accelerated their financial drain. ‘Nobody warned us about the cost,’ Luscombe said. ‘We managed to get a reduced price initially, but now it’s £312.70 per month—that’s £3,500 a year. With six children between us, it’s simply unsustainable.’ Adding to the complexity, Arnold requires the oral solution version of the medication, which isn’t funded by the States of Guernsey and is typically prescribed for older children.
And this is the part that sparks debate: Bhogal claims the PSU hasn’t received requests for this medication, yet Luscombe’s case suggests a glaring gap in accessibility. Are clinicians unaware of the support available, or is the system failing to address these needs proactively? Luscombe’s plea is clear: ‘Nobody deserves to be refused medication because they can’t afford it.’
Despite their own health challenges—Arnold’s father suffers from the same chronic illness—the family is determined to fight for their son. Luscombe hopes to secure a disability allowance, but the process could take months. ‘What do we do in the meantime?’ she asks. ‘Who will actually listen?’ Her words echo the frustration of countless families navigating a system that often feels indifferent to their struggles.
This story isn’t just about one family’s plight—it’s a call to action. Should healthcare systems prioritize profit over people’s lives? Share your thoughts in the comments. Let’s start a conversation that could lead to real change for families like Arnold’s.
