OUR DAUGHTER COLLEEN is one of the 1,000 children in Ireland living with juvenile idiopathic arthritis (JIA).
At nine years old, she takes steroids, a chemotherapy drug and gets painful injections twice a week. She ends up in hospital up to four times a week for various appointments, treatments or emergency department visits. And she has to keep up with school and homework, which takes hours because of the pain in her hands and her eyes. It’s no wonder she has started to ask: why me?
Needles and doctors and hospitals have been a part of Colleen’s life for as long as she remembers. She was diagnosed with JIA when she was five years old, but she first showed symptoms of the disease at just 19 months.
Diagnosis
She woke up one morning with a swollen knee and we took her to the hospital. The swelling went down, but returned again. We were told she was too young to diagnose arthritis and to wait and see.
So we waited. Over the next few years, Colleen would have the odd ache or pain, but nothing that seemed out of the ordinary for a healthy, active child. Until she was five. She fell and hurt her neck. We thought maybe she’d pulled a muscle, but as the days went on her head started to tilt and it stuck like that. We brought her to the emergency department on two separate occasions, and both times we were sent home and told it was muscle spasms, nothing to worry about.
After 10 days at home, we got a phone call telling us to bring her into hospital immediately. Another doctor had flicked through her file, seen her scans and straight away realised her neck was dislocated. She was lucky not to have been paralysed.
A week of painful traction failed to fix her neck. She would need an operation to be fitted with a Halo brace and jacket. After 18 days in hospital, she was finally sent home, before being brought in for a second operation when screws in her brace had to be replaced. By now she had been diagnosed with JIA and uveitis, a disease that destroys eye tissue.
Surgery
When Colleen was seven we were told she’d need to her adenoids removed. She was brought into hospital and prepped for surgery. Just before theatre, the surgeon recognised Colleen and halted the procedure: with the damage to her neck, the risk of paralysis on the operating table was too great.
Our trust in the health system has been shaken time and again. The doctors and nurses and specialists who deal with our daughter are all fantastic people, trying to do the best they can in a system creaking under the weight of government cutbacks.
They are overworked and feeling the strain of a complete lack of resources to deal with the volume of patients coming through their doors.
Coleen Cahill WhiteSource: Rachael Cahill WhiteAlmost one million people across Ireland suffer with some form of arthritis, but not enough specialist consultants to treat them. More than 12,000 people – including hundreds of children – are waiting just to get a diagnosis. And even when they get that diagnosis, they will face waiting list, after waiting list, after waiting list to access the therapies and treatments they need.
Waiting lists and more waiting lists
Last year, after a wait of two years, Colleen finally got to see a dermatologist. Four years ago we were told Colleen would need occupational therapy, a vital service to help her lead as full and active a life as possible. She has yet to receive this.
Arthritis doesn’t just take its toll on Colleen physically: it’s hard for a young girl to understand why she can’t do all the things her brother and her friends can do. We do our best to explain, but she needs the support of a psychologist, which again she is on a waiting list for.
The solution is obvious to the thousands of arthritis patients across the country forced to wait while their condition and standard of life suffers: we need more staff. Minister for Health Leo Varadkar has highlighted the need to appoint staff in Rheumatology services to address the backlogs.
Just 100 specialist care providers across the country would transform the lives of children like Colleen, who are left to wait while their condition deteriorates. Not only that, they would save the HSE millions of euro.
With so many missing services, Colleen, four years after her diagnosis, is nowhere near having the full care team behind her that she deserves to manage her disease and live a full life. She is not the only one.
Rachael Cahill is a mother of two from Finglas West whose daughter, Colleen, was diagnosed with arthritis when she was five years old.
The Why Are We Waiting campaign will be gathering today, at 1pm, outside the gates of Leinster House on Kildare Street, and asking TDs and members of the public to join us. The campaign calls on the next government to appoint just six consultant rheumatologists, 29 clinical nurse specialists, 12 advanced nurse practitioners, 21 physiotherapists and 32 occupational therapists. That adds up to 100 posts, and an end to needless suffering and uncertainty for thousands of arthritis patients like Colleen.
Whyarewewaiting.ie is calling on every election candidate to become an #ArthritisChampion and commit to the 100 Day Plan to tackle waiting lists for people with arthritis.
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