A dedicated paediatric unit to treat children with arthritis is required to bring Ireland up to international standards, a campaign group has said.
In its pre-Budget submission, Arthritis Ireland called on the Government to ensure a paediatric rheumatology unit is created to treat children with juvenile arthritis.
More than 1,000 children in Ireland live with the condition and the organisation said the resources available to treat it are inadequate.
The paediatric rheumatology service at Crumlin children’s hospital does not have a dedicated clinical unit; there are just two consultant paediatric rheumatologists and one HSE funded rheumatology clinical nurse specialist for the whole country.
Dr Orla Killeen, one of the consultants, said the number of referrals to Crumlin has increased “exponentially” in recent years amid greater awareness of juvenile arthritis. However, she said the lack of resources means children typically remain on waiting lists for longer than two years.
The British Society for Paedriatric and Adolescent Rheumatology states children with suspected arthritis must be seen by a paediatric rheumatology team within four weeks of referral.
“Early intervention with aggressive treatment is essential to prevent juvenile arthritis extending to multiple joints and result in a more positive outcome for children,” Dr Killeen said.
In its submission, Arthritis Ireland called for additional consultant and support staff to be appointed to treat juvenile arthritis. “There are currently just two consultant paediatric rheumatologists. A significant proportion of their time is allocated to general paediatrics rather than dedicating their time and expertise solely to children with arthritis and rheumatic disorders.”
At a press conference in Dublin today a number of children described their experience with the condition. “The worst thing about having juvenile arthritis is not being able to move around when in a flare and the injections I have to get twice a month. They sting horribly and are really sore,” said 10-year-old Roisín Sweeney.
“I think it’s unfair that children with arthritis have to wait so long to see a consultant. They should be seen immediately so they can be diagnosed, get the drugs and not be in pain,” she added.
Daniel Troy (14) said the worst thing about juvenile arthritis, apart from the chronic pain, “is that not many people are well informed about the condition and that kids can even get arthritis. I find it hard to explain my own disease”.
He added: “I think it’s extremely unfair that children are waiting so long in such pain and discomfort without even a diagnosis and this needs to stop.”
