Parents vow to fight for juvenile idiopathic arthritis services

PARENTS of children who wake screaming at night because of juvenile idiopathic arthritis (JIA) have vowed to keep fighting for essential services.

The Irish Children’s Arthritis Network (ICAN) say children who are left in pain and at risk of permanent joint damage are not a HSE priority.

They say Minister for Health Simon Harris, the HSE and Our Lady’s Children Hospital Crumlin (OLCHC) have all admitted there are significant waiting lists for children with JIA. According to ICAN, these bodies have also stated no additional funding has been provided to improve matters.

“We’re not giving up our fight for a third paediatric rheumatologist and a full multi-disciplinary team. The drain on our adult services will be immense if children aren’t treated early and aggressively,” says ICAN chairperson Wendy Costello.

As chair of the European Network of Children with Arthritis, Costello meets patient associations from all over Europe. “No country has the dire services we have. There are currently 1.7 paediatric rheumatology consultant posts in OLCHC — yet international standards suggest there should be a minimum of six in Ireland.”

More than 1,000 children here are battling arthritis, with 56 new cases diagnosed annually. Current figures show 793 children waiting to see a consultant rheumatologist. National average wait time in 2014 was 125 days — in 2016 it was 169 days.

“We’ve seen a huge decline in services in the last year,” says Costello, whose 18-year-old daughter was diagnosed with JIA aged four.

“We had no paediatric rheumatologist back then – but we had access to steroid injections (which give immediate pain relief to affected joints.) When the arthritis flared up, we’d wait two to three weeks to get the injection. Now it’s a six- to eight-month waiting list.”

Costello describes the typical scenario for families affected by JIA — the most common childhood rheumatic disorder: “The parent’s woken by a child with a very sore, swollen knee, ankle or finger. The parent doesn’t think ‘arthritis’. The GP thinks growing pains. Eventually, the child’s brought to A&E and, if lucky, a paediatrician says this could be JIA. Then your child waits three years to be diagnosed at Crumlin.”

She gets calls from parents who say their child screams with pain at night. “These children are stiff and sore in the morning. Their fingers are all clawed in. It could take two hours to work out the stiffness, to get some mobility going and to get into school. Most children with JIA are late for school.”

When desperate parents phone, she asks two questions: ‘Can you afford to go private?’ (Waiting time for private appointment with paediatric rheumatologist is eight/nine months). And ‘would you go to your TD, get them to ask questions in the Dáil?’

Costello cites the case of Daniel, who waited three years for a public appointment. The child had to be started on the highest level treatment — biologic drugs.

“Like all children with active arthritis, he runs risk of permanent joint damage, affecting his skeletal growth. He now faces the risks of living with long-term disability. This could be avoided with early, effective treatment and monitoring of the disease.”

Multi-disciplinary services needed by children with JIA include physiotherapy and occupational therapy, hydrotherapy and psychology. Hence ICAN’s call not just for another paediatric rheumatologist but for essential multi-disciplinary services too.

A spokesperson for OLCHC says a business case has been submitted to the HSE for a third consultant post and additional resources to deliver rheumatology services at the hospital. “There is funding for two new advanced nursing practitioner (ANP) posts as part of the National Demonstrator Pilot for ANP’s in the Department of Health which are currently being progressed.”

In Carrigaline, Sean and Lynda Connolly’s 10-year-old son Matthew’s right knee swelled up in May 2013. “Rest, ice, Nurofen — no matter what we did it didn’t go down,” recalls Sean. Blood tests registered high for an inflammatory marker. Referral to a CUMH-based paediatrician resulted in a JIA diagnosis. Then began Matthew’s wait to see a paediatric rheumatologist.

“When your child’s tired and in pain, every hour seems like a day,” says Sean, who went to great lengths to get Matthew seen as soon as possible, including making contact with medics in Britain.

The couple also brought Matthew to Sean’s mother’s rheumatologist, who drained the child’s knee and gave him a steroid injection. He got immediate relief, which lasted just two weeks.

“The rheumatologist wrote to Crumlin saying Matthew’s knee was bad and he needed to be seen soon. Within a week we received our appointment — unbelievable. I don’t know anyone who got one that soon.”

Sean says the “really sickening thing” about JIA is it gives the child glimpses of normality. “Matthew could be tired, sore and stiff with swollen joints and then he goes into mini-remission and is fine. Everybody thinks ‘oh, we’ve turned a corner’, and then it hits again. It’s very disheartening and hard to take.”

Over Matthew’s four-year struggle with JIA, the only joints un-affected are his hips, elbows and shoulders. He’s on an immuno-suppressant, an anti-inflammatory as needed and a biologic injection fortnightly.

“It’s one thing getting seen in Crumlin [initially]. But lately we’re seeing clinics cancelled, especially the biologic clinics. So, though you should be seen every three months, it could be 12. Thankfully, we haven’t had to wait 12 months — but it has gone to six.”

This is a worry because biologic drugs are new. “They have no history, so we really need the appointments to be kept to three months,” says the dad of three, who has an issue with all JIA services being Dublin-based. “If we could have a multi-disciplinary team in Cork or Limerick, serving the Western seaboard, that’d be great.”

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‘I haven’t seen my child walk straight since March’

Arklow mum of three Karen Manning says arthritis isrunning through her10-year-old son Ben “like a river”.

“One leg won’t straighten properly. The other’sconstantly sore. Both thumbs are out like balloons. He can’t straighten his index finger. Sometimes at school his fingers are too stiff to write. His big toe’s swollen and he’s complaining about his jaw. He wakes up every morning with a headache. Some mornings he hobbles down the stairs, other days he comes down on his bum. He’s like a little old man trying to get up from the chair and to straighten out.”

Karen and husband Jude first noticed something wrong after Ben hurt his right foot playing football last February. X-rays revealed nothing.During a six-week wait for the fracture clinic, his foot didn’t improve. His left knee swelled up.

In July, the Mannings’ GP suggested going to A&E to get bloods done. However, the doctor there decided not to do the tests. “I was gutted. At least we’d have found out what was wrong,” says Karen, who was shocked when the doctor said Ben was a “bit overweight and should cut down on food portions”.

“He thought his knees were swollen because of his weight. I said he hasn’tbeen able to run and play or go on his bike since March, he’s been on the couch since then’.

” In fact, says Karen, Ben’s a “real outdoorsy kid”.

The family GP who finally did blood tests and in August the Mannings discovered Ben was testing high for arthritis.

“I thought ‘but arthritis is for old people’. We were dumbfounded.” During the summer Karen was told Ben would wait four to six months for an appointment with a paediatric rheumatologist. .

“We’re concerned Ben’s getting worse. The arthritis isspreading. We’re afraid of long-term damage — that we’re going to be looking at surgery rather than physiotherapy. And he’s on so much painkiller every day — that couldn’t be good for him.”

Ben’s a “real chirpy kid”, she says. “He has days when he’s in pain and he’ll sob. Then he’ll bounce back and say ‘OK, I’ll get on with it’. I haven’t seenmy child walk straight since March. We’re trying to keep his shoulders back so he won’t get a curve in his spine.

“I want this nightmare to end.”