'We've sold belongings to pay for son's medicine'

Members of a family say they have had to sell some of their belongings to help pay for their nine-month-old son's medication.

Mother Kiely Luscombe said her and her partner feel "let down" and "lost" after finding out that the medicine Arnold needed was going to cost them £312.70 per bottle, which would last about a month, as it was not funded in Guernsey on prescription.

Luscombe said: "I just feel lost. My partner and I have tried so much and we just feel we're at an end of a road and we're not sure who to turn to".

Teena Bhogal, Chief Pharmacist said "We do not want families to feel alone or unsupported when trying to secure care for their child."

Bhogal added: "We want to be clear that clinicians can contact the Prescribing Support Unit (PSU) at any time for advice, and we are here to help explore suitable alternatives or, where appropriate, consider adding a medication to the prescribing list."

After struggling with vomiting and stomach issues from just three weeks old, Arnold was eventually rushed to Southampton Hospital for treatment in October 2025.

He was diagnosed with dysmotility and hypermotility, which is a disorder that affects the digestive system and means Arnold struggles to keep food down and have regular bowel movements.

"He was having to be held 24-7 because he was in so much pain. His tummy was so tight it was hurting; he was constantly arching his back," Luscombe said.

Arnold was prescribed Mebeverine from the pharmacy inside Southampton General Hospital before the family made the journey back to Guernsey.

Luscombe said that the medication helped for a while but then became less effective, so they were told to up the dose and they noticed how quickly the supply was going down.

"Nobody told us that his medication was going to cost quite as much... We managed to get a reduced price for Arnold's first medication at £205.50. But, going forward each month, Arnold's medication is now going to cost us £312.70," she said.

Arnold can only have the oral solution version of the medication, which is generally prescribed for children aged 3 years and older and is not funded by the States of Guernsey.

Teena Bhogal said "to date, the PSU has not received any requests for assistance regarding a patient needing this particular medication" and is urging "any clinician caring for a patient in this situation to reach out".

"We're looking at going through one bottle a month, so we're looking at £3,500 a year.

"We've got four children, six children between us, so it's just not feasible," Luscombe said.

The family said they have been advised to drop Arnold's dosages to help make a bottle last longer but he started to get even more poorly.

Luscombe explained: "His tummy swelled, he was vomiting, he couldn't go to the toilet, he was crying. He just didn't have a quality of life that he should have.

"I don't understand why it should cost so much money just to give him that quality of life."

Despite having the same chronic illness himself, Arnold's father has returned to work, while Luscombe is 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."

Luscombe said she hoped to get some disability allowance in the future, but added: "It could take months and I'm sat thinking: 'What do I do for those months? Who do we talk to? Who do we ask? Who will actually listen?'

"I feel so let down. I feel lost. My partner and I are fighting and fighting and fighting, but we just seem to be hitting brick walls every turn.

"Nobody deserves to be refused medication because you can't afford it."

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