Hundreds of children waiting years for relief from pain of arthritis
Only two consultants in country to treat condition which is as common as childhood diabetes
Published 22/10/2016 | 02:30
Sixteen-year-old Darcy White, from Kildare town, began experiencing pain in her jaw four years ago, but it was only two years later before arthritis was diagnosed and a further two years before she was seen by a dedicated rheumatologist.
Darcy is one of hundreds of children around the country who have been left waiting for years, often in pain, to see a dedicated consultant to treat their arthritis.
The latest figures from Arthritis Ireland show that the crisis for children with arthritis is deepening with 565 children on waiting lists to be seen, an increase of 400pc since January.
"It was really hard for me waiting two years. I can't imagine what it's like for little kids. They wouldn't understand why they have to wait that long and why there are in pain," said Darcy. "If I'd been seen by a rheumatologist I'd be a lot better now. My jaw wouldn't be as damaged. A lot of the damage could have been prevented and that's not right. It's a long time since I have been without pain.
"The pain is excruciating, it often brings me to tears. It came out of nowhere and changed my life completely; it stopped me from doing the things I love and I hate it for that. I wish with all my heart that the services for children with arthritis would improve. Children should not be left waiting in pain. Don't they realise they are robbing our childhood and causing irreparable damage physically and emotionally?"
Darcy's mum Marianne stresses the importance of children with arthritis being seen quickly. "If a child is complaining about a joint, they should be immediately referred to a rheumatologist. There's damage being done and you don't know the extent of it. With children you might not automatically think arthritis," said Marianne. "I would say to other parents that if they bring their child to a GP with joint pain, give it a certain amount of time - say a month - before you take the next step. If the joint is still causing a problem, you need to act quickly. Parents need to push for appointments."
Marianne says she can't understand why treating arthritis in children is not a priority. "It can be treated and the damage can be stopped. If treatment starts quickly, damage to the joints doesn't happen," she added.
While arthritis is not something we usually associate with children, juvenile idiopathic arthritis (JIA) affects one out of every 1,000 children in this country, making it as common as childhood diabetes.
With growing bones and developing musculature, experts agree the sooner children with arthritis are seen the better because damage done to joints is irreparable. But there are only two dedicated consultant paediatric rheumatologists in Ireland to care for these children. Arthritis Ireland is calling for the urgent appointment of a third consultant to help ease the burden on already hugely over-stretched services.
The gold standard of care for people suffering with arthritis - devised by the British Society for Paediatric and Adolescent Rheumatology (BSPAR) - states children with suspected arthritis must be seen by the paediatric rheumatology team within four weeks of the referral being made.
However, the chronic lack of dedicated doctors means children are waiting much longer than the recommended time to be seen and all the while their condition is causing damage that cannot be undone.
Paediatric rheumatologist Dr Emma MacDermott says there is no doubt the sooner children are seen and started on treatment, the better. "Any persistent inflammation in a joint can cause long-term damage. Any prolonged period of inflammation can affect growth," she said.
Dr MacDermott, who is based at Our Lady's Children's Hospital, Crumlin, says the disease in children is complex because you are dealing with growing musculature, bones, immune systems as well as growing personalities. "The impact of a chronic illness is huge on a child and their families. These diseases are chronic and these children need to attend hospitals regularly. As children enter adolescence, they can become very disillusioned at having to deal with all this," she said.