Imagine the heartbreak: a family forced to sell their cherished belongings just to afford life-saving medicine for their infant son. This is the stark reality for Kiely Luscombe and her partner, who are struggling to secure vital medication for their nine-month-old son, Arnold. The emotional toll is immense, leaving them feeling 'let down' and 'lost' as they face an overwhelming cost for his treatment.
Arnold, who has been battling severe digestive issues since he was just three weeks old, was diagnosed with dysmotility and hypermotility. This complex condition means his digestive system struggles to function properly, making it incredibly difficult for him to keep food down and maintain regular bowel movements. As his mother heartbreakingly described, he was in constant pain, his little body arching from discomfort, requiring 24/7 care.
After being rushed to Southampton Hospital in October 2025, Arnold was prescribed Mebeverine. While this medication initially offered some relief, its effectiveness waned, leading to an increased dosage and a rapidly depleting supply. But here's where it gets controversial: the family discovered that this essential medication, specifically the oral solution needed for Arnold (typically prescribed for children aged 3 and older), is not funded by the States of Guernsey on prescription. This means they are facing a staggering cost of £312.70 per bottle, with each bottle lasting approximately a month.
"We're looking at going through one bottle a month, so we're looking at £3,500 a year," Kiely shared, highlighting the immense financial burden on their family of four children. They were even advised to reduce Arnold's dosage to make the supply last longer, but this led to a severe deterioration in his health, with him experiencing swelling, vomiting, and an inability to pass stool. "He just didn't have a quality of life that he should have," Kiely lamented, questioning why such a cost is associated with ensuring her child's well-being.
In an effort to manage, Arnold's father has returned to work, while Kiely dedicates herself to caring for their son. "I've never seen my children go without, so, no matter what it took, my partner and I would go to the ends of the earth to get what we need to get," she stated with fierce determination.
While the family hopes to secure disability allowance, the process could take months, leaving them in a desperate situation. "I'm sat thinking: 'What do I do for those months? Who do we talk to? Who do we ask? Who will actually listen?'" Kiely expressed, feeling utterly let down and repeatedly hitting brick walls. And this is the part most people miss: the agonizing wait for support while a child suffers. "Nobody deserves to be refused medication because you can't afford it," she declared, a sentiment that resonates deeply.
Teena Bhogal, the Chief Pharmacist, has stated that the Prescribing Support Unit (PSU) has not yet received any requests for assistance regarding this specific medication. She urged clinicians to reach out, assuring that they are there to help explore alternatives or consider adding medications to the prescribing list. Do you believe that essential medications for infants should always be funded, regardless of age restrictions on the formulation? Or is it the responsibility of families to navigate these costs? Let us know your thoughts in the comments below!
