Children with arthritis wait more than year for care

CHILDREN LIVING with the chronic pain of arthritis are waiting up to 13 months for an appointment with the State’s only paediatric rheumatologist, Arthritis Ireland said yesterday as it began a campaign for improved services.

International best practice recommends that children with arthritis be seen within six weeks of the onset of symptoms.

Paediatric rheumatologist Dr Orla Killeen, based in Our Lady’s children’s hospital, Crumlin, said some 350 children were awaiting a first appointment with her.

“Thirteen months for a first appointment is absolutely horrendous and shameful,” she said. Emergency cases were seen within four months.

Dr Killeen said early intervention with aggressive treatment was essential to prevent arthritis extending to multiple joints.

“If left untreated, it can lead to permanent muscle wastage, joint damage and deformity, not to mention the trauma that a child and its family experiences coping with such a new diagnosis.”

An estimated 1,000 children have arthritis, with some as young as six months old. Dr Killeen highlighted the case of one two-year-old girl who was referred to her as an emergency case in May. She could not be seen until September, by which time her condition had significantly deteriorated. She may now experience permanent muscle wastage.

Dr Killeen said Ireland had the second-lowest ratio of paediatric rheumatologists per head of population in Europe. Glasgow, with a population of one million, has three full-time paediatric rheumatologists. “Children deserve better. We are failing these children every day that we delay their treatment,” she said.

Susan Flavin’s daughter, Belle (5), was diagnosed with arthritis when she was three. Ms Flavin said her daughter was in chronic pain when seen at Tallaght hospital in September 2007, but the earliest appointment she could get was for the following March.

As they waited for the appointment, she awoke one night to hear her daughter screaming that she couldn’t walk. By that time, her knees were swollen like grapefruits and she couldn’t suck her thumb because of the pain in her hands and elbows, said Ms Flavin.

She took her to Crumlin’s emergency department where Belle had to be placed in a private room because her screams were waking other children at night. “Her recovery was just amazing,” Ms Flavin said, recalling how she was able to dance the day after she received injections to her joints.

She said it made her so angry to think of the unnecessary pain her daughter had to endure because of the inadequate services.

Danny De Vaal (11), who was diagnosed at six, said there should be more paediatric rheumatologists in Ireland.

“If Brian Cowen were to ask me, ‘Danny, there are lots of things in Ireland that need attention such as the recession, education and so on. Why should I put money into arthritis?’ Well I would tell him the doctor prescribed medicine for me. And even [when I’m] getting medicine, my arthritis plays up. But for those children who don’t get medicine and suffer with arthritis, [they] must be in horrible pain,” he said.

Eleanor Kellett (12) described arthritis as “like knives sticking in your joints” and said it was awkward and embarrassing when she could not take part in gymnastics or rope-climbing at school.

Arthritis Ireland has encouraged people to sign a petition on its website, www.arthritisireland.ie, which calls for the immediate appointment of a second paediatric rheumatologist.

Asked about a 2005 Comhairle na nOspidéal recommendation that two paediatric rheumatologists be appointed, a HSE spokeswoman said the HSE continued to work in a collaborative way with Arthritis Ireland to develop the best model of care for adults and children with arthritis.

She said the HSE had asked Arthritis Ireland earlier this year to identify two priority consultant posts which could be funded this year, and it identified two posts for the treatment of adults. “If the prioritisation is different now, funding would have to be switched or new funding sought,” she said.

John Church of Arthritis Ireland said the needs were massive for both adults and children and it shouldn’t be an “either-or” situation.

In their own words

"Children like me can't just get up and say, 'mam, I'm going down to play football with my friends'. I can't cycle my bike for more than five minutes without worrying about the pain I would be in that night."

– Danny De Vaal (11)

"Her knees were like two little grapefruits . . . her joints were so swollen we couldn't get her clothes on."

– Susan Flavin, speaking about her daughter Belle, who was three years old when she was diagnosed.

"I couldn't sleep because I was in such much pain. In fact I couldn't climb the ladder to get up to my bunk bed and had to sleep in the spare room."

– Eleanor Kellett (12)

"We want people to understand that simple things like walking down the stairs, getting dressed and going to school are really difficult for kids like me with arthritis.

"Receiving treatment on time is the difference between living the life that my friends can or living my life watching them from the sidelines."

– Breffni Molloy (16)