Mother’s battle over son’s juvenile arthritis care

WHAT began as a pain in Fergal Buckley’s side in January 2009 took six months to diagnose as juvenile arthritis and almost another six months to secure an appointment with the appropriate medical expert.

The then nine-year-old boy was initially diagnosed with a kidney infection but when the pain failed to go away, his doctor referred him to Cork University Hospital (CUH) in February for further investigation.

His mother Niamh felt little was done for him and he was sent home the same day. Two weeks later he was back at CUH, but no progress was made and he was sent home once more.

By March he was struggling to make it to school and by the time he made his Holy Communion in May, movement was becoming more difficult.

“Then in June I noticed he had a high temperature early in the morning and then again in the evening. I mentioned to a friend who is a doctor and she said a recurring high temperature should be checked out. This time around, he was admitted as an in-patient to CUH for three days — and diagnosed with juvenile arthritis,” Niamh says.

Fergal, from Knockraha, Co Cork, was sent home with anti-inflammatories but the high temperatures persisted, the arthritis got worse and his appetite diminished. His GP had him re-admitted to CUH in July for tests, including a bone marrow biopsy.

After a few days, CUH decided he should be transferred to Our Lady’s Hospital for Sick Children in Crumlin, but there were no beds available. He remained in CUH for 12 days and was prescribed steroids, which improved his arthritis but had other side-effects.

CUH sought to secure him an out-patient appointment in Crumlin with paediatric rheumatologist Dr Órla Killeen and succeeded — with a date of March 2010. In the end, thanks to their GP’s persistence, they secured a Crumlin appointment for November 2009.

A new treatment, which started last December, must be administered intravenously every two weeks.

This requires travelling to Dublin the night before as Fergal suffers from epilepsy, triggered by sleep deprivation, so getting up at 5am for a 9am appointment is not an option. Each trip costs about €200 for petrol, accommodation and subsistence. “I was a play school assistant but I had to give up the job. Fergal was out of school so much I needed to be at home with him. So it was a financial blow, but if the treatment works, that’s all that matters,” says Niamh.

On his worst days, Fergal needs a wheelchair, but otherwise his walking is reasonable. Writing, however has become increasingly difficult due to arthritis in his fingers and thumbs.

Niamh wrote to the HSE requesting a laptop last April and was hopeful funding would arrive before the new school term at Scoil Mhuire, Knockraha, in September 2010. There was no response. Fergal’s occupational therapist then wrote to the HSE and was told there would be no decision before Christmas. To date, no response has been forthcoming, and during the week Fergal’s teacher, Ms O’Brien, said the board of management would bear the cost in the interim.

“Dr Killeen would love if he could have his treatment in Cork,” says Niamh. “He misses school every time we travel to Dublin.”