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 facing an impossible choice between their finances and their child’s health. But here’s where it gets even more devastating: the medication their nine-month-old son, Arnold, desperately needs costs a staggering £312.70 per bottle—and it’s not covered by prescription funding in Guernsey. For parents Kiely Luscombe and her partner, this means a yearly expense of over £3,500, a burden they simply cannot bear alone. And this is the part most people miss: despite their tireless efforts, they feel abandoned by the system, left to navigate a maze of bureaucracy while their son suffers.
Arnold’s journey began at just three weeks old, when he started battling severe vomiting and stomach issues. By October 2025, his condition had worsened to the point where he was rushed to Southampton Hospital. Diagnosed with dysmotility and hypermotility—a digestive disorder that makes it nearly impossible for him to keep food down or have regular bowel movements—Arnold’s pain was so excruciating that he had to be held constantly. ‘His tummy was so tight it was hurting,’ Luscombe recalled. ‘He was arching his back in agony.’ The prescribed medication, Mebeverine, initially provided relief, but its effectiveness waned over time, forcing the family to increase the dosage—and the cost.
Here’s the controversial part: while Teena Bhogal, Chief Pharmacist, assures families that support is available through the Prescribing Support Unit (PSU), Luscombe claims they’ve received no guidance. Bhogal insists clinicians can seek advice and explore alternatives, but Luscombe feels let down, questioning why a medication essential for her son’s quality of life isn’t funded. ‘Nobody deserves to be refused medication because you can’t afford it,’ she said. This raises a critical question: Should life-saving treatments be inaccessible due to cost, especially for families already stretched to their limits?
The family’s situation is further complicated by Arnold’s need for the oral solution version of Mebeverine, typically prescribed for older children and not funded by the States of Guernsey. With four children to care for, Luscombe and her partner have been advised to reduce Arnold’s dosage to stretch the medication, but this only worsens his condition. ‘His tummy swelled, he was vomiting, he couldn’t go to the toilet,’ Luscombe explained. ‘He just didn’t have a quality of life that he should have.’
Arnold’s father, who shares the same chronic illness, has returned to work, while Luscombe dedicates herself to caring for their son. Despite their sacrifices, they’re now selling personal belongings to cover the costs. Luscombe hopes for a disability allowance, but the process could take months. ‘What do I do for those months?’ she asks. ‘Who will actually listen?’
This story isn’t just about one family’s struggle—it’s a stark reminder of the gaps in healthcare systems that leave vulnerable families behind. Is it fair for parents to bear the financial burden of their child’s survival? Share your thoughts in the comments. Let’s spark a conversation that could drive change for families like Arnold’s.
