National Arthritis Week: 565 children yet to be seen about suspected arthritis
130 of those children have waited in excess of 18 months, a staggering 400% increase on the January figure, which was 22.
The excessive waiting times for children with suspected arthritis are fuelled by the chronic shortage of consultant paediatric rheumatologists. There are just two for the entire country.
The lack of specialist staff, and concomitant long waiting times, have prompted Arthritis Ireland to describe the situation as a “national crisis”.
Speaking at the start of National Arthritis Week, which runs from today to October 16, Arthritis Ireland CEO, John Church, said Ireland was ranked as “having one of the lowest number of paediatric rheumatologists in Europe”.
“This is a national crisis, so enough is enough. As part of National Arthritis Week, Arthritis Ireland are calling for the urgent appointment of a third consultant paediatric rheumatologist to be appointed at OLCHC (Crumlin), to help ease the huge burden on the already overstretched services,” Mr Church said.
Because of the potentially crippling impact of not receiving treatment in time, the British Society for Paediatric and Adolescent Rheumatology (BSPAR) says children who are suspected of having arthritis should be seen by the paediatric rheumatology team within four weeks of the referral.
However, figures from the National Treatment Purchase Fund, for September, show:
- 101 children are waiting 3-6 months for an initial appointment, following referral;
- 138 waiting 6-12 months;
- 103 waiting 12-18 months;
- 130 waiting more than a year-and-a-half.
The dangers of delaying treatment for those diagnosed with juvenile idiopathic arthritis have been repeatedly highlighted by Dr Órla Killeen, one of Crumlin’s two paediatric rheumatologists.
Sbe has warned not just of the physical damage delayed diagnosis can cause, but also of the psycho-social issues that can affect children, including anxiety and depression.
Her concerns are shared by Mr Church, who said JIA can, if left untreated, “lead to permanent joint damage, muscle wastage and deformity, not to mention the trauma a child and its family experiences. Children deserve better,” Mr Church said.
“Children on waiting lists are not just waiting in pain; they are also at risk of permanent, irreversible joint damage that impacts on their ability to live a normal a life as possible,” he added.
Arthritis affects 1,200 children nationwide.
There are seven different types of childhood arthritis, and these can affect all ages, from babies and toddlers to teenagers.
To support Arthritis Ireland, sign their petition, or donate by logging onto arthritisIreland.ie.
‘They are robbing our childhood’
Marianne d’Arcy recalls exactly when her daughter first saw a paediatric rheumatologist — almost two years after being referred — because the appointment fell on World Arthritis Day, October 12, 2015.
By then, Darcy White, from Kildare Town, had endured years of pain, bouts of lockjaw, ankle fractures, disrupted schooling, anxiety, and panic attacks.
Still, when the family was finally given a diagnosis of Juvenile Idiopathic Arthritis, it came as a shock.”We all sat there in the consultant’s room shaking our heads,” Marianne says.
Darcy, now 16, was first referred to a rheumatologist in 2013 on the advice of a maxillofacial surgeon treating her for lockjaw. She joined a lengthy list of children waiting to be seen at Our Lady’s Children’s Hospital Crumlin.
By then, she had endured three ankle fractures, the most recent in 2013, the year she opted for home-schooling, because the physical pain and psychological stress were simply too much.
“She’s very motivated about her school-work, so that wasn’t a problem,” says Marianne. “And she returned to school the following year, but I can hardly remember a year when we weren’t contacted by the school for missing more than 20 days.”
Since becoming a patient of Crumlin, Darcy has tried two different drug treatments, but neither has worked, her mother says.
“The first was a chemotherapy drug. Darcy was told she’d be injecting herself once a week,” Marianne says.
The second was what is known as a biologic drug, a relatively new class of drug given as intravenous infusion. Marianne says this has also failed to bring about improvement.
“We got word last week when Darcy was in for joint steroid injections that they would be trying her with another biologic,” says Marianne.
So how has Darcy dealt with years of pain and waiting to be seen by the relevant experts?
“Had I been seen earlier my condition would not be this aggressive,” she says.
“The pain is excruciating, it often brings me to tears.”
Her wish is that other children with arthritis not be left waiting as she was.
“Don’t they realise they are robbing our childhood and causing irreparable damage physically and emotionally?” says Darcy. “Don’t they care?”
