Waiting can be most painful part of arthritis, say sufferers

Laura Hickey first recalls being in pain at the age of 6 as she sat on her dad’s knee having anti-inflammatory cream rubbed into her joints.

Later she would have to go to her GP to have fluid syringed out and then she was told she must give up her beloved sports and dancing.

She was diagnosed with arthritis at the age of 10 and it was a huge blow. “I was a real active, go-getter child so it was very hard to deal with,” she says.

Now aged 30, the Sligo woman works as youth and family officer for Arthritis Ireland, and has seen huge advances in arthritis treatments and a much better understanding of how to manage it and the important role exercise plays in it.

“I’ve been on a new drug for a year and I don’t know myself on it so there are improvements all the time,” says Laura.

One thing that hasn’t changed much, however, is the waiting times for services. “We have more than 1,000 children diagnosed with arthritis but there are 455 more suspected cases waiting to see a consultant and they could be waiting two years,” she says.

“By then they could have joint deformity which is not reversible and their growth can stop so they’re being given a disability that could have been prevented.

Amy Forde from Cork campaigns outside Leinster House.

“They can’t get specialist drugs while they’re waiting — only anti-inflammatories which can have side-effects like stomach problems, so the children don’t want to take them. It’s awful for them and heartbreaking for parents.”

Arthritis Ireland chief executive John Church says around 1m people in Ireland have arthritis and services are badly under-resourced.

“We have 35 consultant rheumatologists and we’re looking for six more. We’d need 18 more to bring the numbers up to World Heath Organisation standards but six would make a big difference to waiting times.”

Rachel and David White feel fortunate to be living in Dublin as there are no rheumatology services for children outside of the capital. They say caring for their nine-year-old daughter Colleen would be almost impossible if they had to travel.

“Last week she was at the hospital four times for routine injections, bloods, etc, and if something goes wrong, she could be there a lot more,” says Rachel.

Colleen was suspected of having arthritis at 19 months but was only firmly diagnosed at five when she dislocated her neck. Her arthritis affects her eyes and makes her joints loose.

The worst part for her parents is the waiting. “She needs to see specialists for a few different things but they can’t even give us a time frame,” says Rachel.

David says the waits are a constant worry. “We want to keep on top of her arthritis. It was just so lucky she wasn’t paralysed when her neck dislocated. We don’t want to depend on luck again,” he says.