Children with arthritis waiting more than two years to see a specialist

More than 100 children with a potentially lifelong crippling condition are waiting in excess of two years to see a specialist at the only public hospital in the country to provide the service that they need.

In total, 373 children are on the paediatric rheumatology outpatient waiting list at Our Lady’s Hospital for Sick Children in Crumlin, a service where staffing levels fall far below international standards, according to consultant paediatric rheumatologist Orla Killeen.

While the hospital acquired a second fulltime specialist, Emma MacDermott, two years ago, Dr Killeen said it “should have four or five paediatric rheumatologists based on UK and European figures”.

Dr Killeen and Dr MacDermott are the only two paediatric rheumatologists in the country. As a result of understaffing:

-Just 51 children of the 373 on the waiting list have been given an appointment date;

-186 patients are waiting 0-6 months;

-86 patients are waiting 6-12 months;

-101 patients are waiting 12-24 months.

Arthritis Ireland said some children are waiting more than two years for an initial appointment.

Dr Killeen said they did their best to see urgent cases quickly. “The international standard for treating children with joint swelling is six to eight weeks,” she said.

“We do our best to accommodate urgent cases quickly but we can’t always guarantee that. Sadly some on the list are genuine arthritis cases and if we saw them early, it could prevent irreversible joint damage.”

Failure to treat children early could prevent them reaching their full growth potential, she said. In addition, children with juvenile rheumatoid (idiopathic) arthritis (JIA) often miss out on schooling and struggle with psycho-social issues, including depression.

Crumlin has no dedicated ward for children with JIA, prompting parents to set up a support group, Irish Children’s Arthritis Network, to push for such a ward.

Wendy Costello, chairwoman of ICAN, said it is also pressing for the establishment of satellite clinics to treat children locally.

Dr Killeen supports the establishment of outreach clinics. However, she said, the Crumlin service is so overwhelmed, that she “couldn’t see it [satellite clinics] coming to fruition” in the short term. “At the moment, we need more staff ourselves. I think we need to sort ourselves out first,” she said.

The absence of satellite clinics is against a backdrop of high demand for services outside the Dublin area. Dr Killeen’s figures show that, in 2011, up to 12% of her patients travelled from Cork, and another 14% from Galway and Donegal combined.

More than 1,000 children in Ireland are currently living with JIA, and some of them will outline the struggles they face at an Arthritis Ireland ‘Waiting in Pain’ conference which takes place next Thursday in Buswell’s Hotel, Dublin. Dr Killeen will also speak at the event.

JIA is the most common type of arthritis in children under the age of 16. It causes persistent joint pain, swelling, and stiffness and in more serious causes, can stunt growth. Some children experience symptoms for a few months, others for the rest of their lives.

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