Launching its #SeeMe awareness campaign as part of National Arthritis Week, Arthritis Ireland said 902 young people were on the rheumatology outpatient waiting list at the end of January 2018, a 33% increase on the previous year.
Of these, the number of long waiters had grown exponentially — 543 were waiting more than 12 months, up from 302 in January 2017. Among them are children with juvenile idiopathic arthritis (JIA) a chronic, potentially crippling disease, from which remission is possible with early treatment.
International best practice indicates that patients with suspected JIA should be seen by a paediatric rheumatologist within six weeks of the referral being made.
Gráinne O’Leary, CEO of Arthritis Ireland, said children “need and deserve to receive prompt, timely access to care, diagnosis and clinical assessment” to give them the best chance of optimal outcomes. She said the way to do this was through implementation of the national model of care for paediatric rheumatology, approved by government almost two years ago.
“Despite being approved in June 2016, progress has been painfully slow in delivering upon its recommendations,” said Ms O’Leary. “With every delay and inaction, our children’s lives are impacted.”
The model of care recommends the minimum requir-ements for a specialist team delivering paediatric rheumatology care, including six consultants. At present, there are just 2.1 whole time equivalent consultant paediatric rheumatologist posts in Ireland, based at Our Lady’s Children’s Hospital Crumlin (OLCHC) and Temple St Children’s Hospital.
Emma MacDermott, consultant paediatric rheumatologist at OLCHC, said approximately 1,200 Irish children are affected by JIA.
“It can result in pain, fatigue and decreased mobility and often significantly impacts their ability to take part in school activities, sports, and the fun of being out and about with their friends” said Dr MacDermott.
“Prompt and appropriate access to a multidisciplinary rheumatology team and the medications and inputs they can provide, working with family and friends, can help these children to lead full and active lives.”
One such child is 12-year-old James Casserly, diagnosed with JIA three years ago. His mother, Vicki Casserly, said her son was in pain so unbearable that it culminated in complete loss of movement and a long hospital stay.
While they put all their energy into making sure James could make the most of his childhood, there was considerable pain management involved.
For James, this includes biologic therapy infusion, pain medications, and additional vitamins, among other medicines.
Vicki said he often describes “stiffness, hot joints, burning pain, but he does not dwell on it”.
“Like any 12-year-old, he is determined to live life to the full day-to-day and sets himself challenges and goals he would like to achieve,” said Vickie.
“James loves to play frame football with his local club, Esker Celtic. He is also an avid marathon runner, again, finding a way to do things, in an assisted wheelchair.”
National Arthritis Week runs from April 9 to April 15. Further information and resources are available at juvenilearthritis.ie and arthritisireland.ie.
Arthritis Ireland is asking people to sign a petition on their website calling on the Minister for Health, Simon Harris, to implement the model of care for paediatric rheumatology.