THERE IS A two-and-a-half-year waiting list to see a juvenile arthritis consultant in Ireland – of which there are only two.
The outpatient waiting list had 567 children under the age of two by April 2016, and approximately 1 in 1,000 children in Ireland are diagnosed with the auto-immune disease every year.
9-year-old Rhys was one of those children on the waiting list to be diagnosed, and would only be due his appointment this year if it wasn’t for political intervention.
His mother Caitríona Glennon, who’s from Offaly, told TheJournal.ie of Rhys’ “long road to diagnosis”:
“He was two-and-a-half when he started getting pains in his knees and he started to limp. We were on a waiting list for Tullamore for over a year and then were transferred to orthopaedics in Crumlin.”
Rhys was put on a waiting list for two years – their local GP tried to get him onto the adults’ rheumatology waiting list, but had no luck.
By 2014, he couldn’t walk or sit down for long periods of time. He was in senior infants, but he couldn’t stay in school because standing and walking was so painful for him.
“So one day in May 2014, I got in a car and took him to A&E in Crumlin. They told me that because of ‘human error’ he had been taken off the waiting list.”
By now, they had their suspicions that he had juvenile idiopathic arthritis (JIA), because a friend had been diagnosed with it before and Rhys was showing all of the symptoms.
The doctor they saw in May 2014 also said he probably had JIA, but they couldn’t diagnose him because they weren’t qualified. So they were put on the waiting list again.
Faced with another two-year wait, a friend told them to contact their local TD Barry Cowan, even though Caitríona had “nothing to do with politics before”, she did email him – out of frustration and desperation.
Because of Cowan’s intervention, Rhys was diagnosed a couple of months later with JIA and hypermobility syndrome, which Caitríona says means “he’s double-jointed, which is very common for kids with JIA”.
Treatment
As part of his treatment, Rhys takes a drug used in chemotherapy treatments of cancer on a weekly basis. He also takes anti-sickness tablets and supplements.
Everything is put on hold on Sunday depending on how Rhys is feeling – fatigue and nausea are common side effects.
He also takes a biological drug three times a day and stomach liners to deal with that. He has his bloods taken every fortnight or month depending on the results – Caitríona recalls the first few months he needed his bloods taken “he was so scared we had to almost physically restrain him”.
As well as being emotionally taxing and mentally draining – it all sounds very expensive.
“We’ve a medical card – I’m working part-time and my husband is full-time, but the medical card is up in January so I’m going to have to start fighting for that too.”
State funding
Advocates are looking for more services to meet the number of children with JIA. Currently, there are just two juvenile arthritis consultants in the country, but they are sometimes called to perform general duties despite the demand and the fact that other doctors are not qualified enough to diagnose children.
Source: iCan PAEDSThe recommendation is that children should be diagnosed in the first six weeks of showing symptoms - after that irreversible damage can be made to both muscle and bones.
Currently, the waiting list for diagnosis is 2 years and 3 months.
One of Ireland's only two rheumatologists Dr Orla Killeen said at a conference to raise awareness of JIA in Dublin yesterday said:
"Every year we have a number of patients who present with damage that is quite extensive, and we know if we had seem them in a timely fashion there would have no need for the amount of joint destruction or loss of function or movement.
"Sadly, when we see a patient like that we know we may be able to get the inflammation under control, but we can't repair the damage that's been done.
As adults, these children may not be able to work to their full potential, they may not have access to third level education, or if they do, they might not be in full time employment.
The emotional toll
Meanwhile, Caitríona is also fighting for access to hydrotherapy, which is a type of physiotherapy in a heated pool that helps ease chronic pain and would allow Rhys to exercise without putting pressure on his joints.
Tullamore Hospital has such a pool, and is only 20 minutes away, but it was closed years ago due to a lack of resources. There’s another one in Nass, but it’s 40 minutes away and between constant trips to Dublin, caring for Rhys and his two sisters (aged three and 11) and going to work, Caitríona says the journey is too much.
“You see, Rhys is a sports fanatic - he had to give up handball and rugby because of his condition. But GAA is our life, it’s everything down here. He goes to training but he can’t complete an entire session.
It’s very upsetting, his friends who live along the road come looking for him to play, but sometimes he’s physically not able, he has to stay in his room and he gets very upset.
"See, there’s the mental and emotional aspect to this too: but there’s no access to a psychologist for JIA, and the waiting list for one down here is 18 months to two years."
Caitríona says that they don’t look to the future, but simply deal the day-to-day.
Sometimes it seems like he's doing well, then he has a major flare up and we hit a block wall.
We had to get him a wheelchair for the summer so we could have days out. He can’t walk around the zoo all day, and it's not fair on his two sisters if everyone has to stay home because Rhys isn’t well.
Caitríona also needs to bring Rhys to get his eyes checked every 3-4 months as well, because a condition related to JIA that can cause blindness if it’s not caught in time and treated.
His appointment for this is in Tullamore, and Catríona say she is constantly fighting against appointments being cancelled because of the demand for them.
"I’m going to have to ring again tomorrow to see where we are. People don’t realise it’s more than aches and pains, it’s the emotional side too - and you have to fight for everything."
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