Mammy, I can’t move my knees
But boy in severe pain has his appointment in Crumlin changed from Tuesday to next February
PARENTS were shocked this week when appointments for children attending Crumlin Hospital were cancelled due to staff shortages and the high number of patients needing care.
One mother told the Mail on Sunday how her three-year-old son was diagnosed with a serious condition in April. She was shocked this week when his appointment for this Tuesday was replaced with one in February next year.
Advocates for children with painful conditions like arthritis say the hospital is swamped, and promises of extra funding to treat children with scoliosis has not helped other patients in dire need.
Jennifer Costello’s son Killian was diagnosed with juvenile arthritis after months of pain and misdiagnosis. This autoimmune disease causes the joints to swell and heat, and carries the risk of sight loss.
The Limerick woman said: ‘My son is on a biologic drug. It’s a form of chemotherapy really. I’m not even sure of the side-effects. I don’t have a medical background so we are learning all of this as we go. To leave us without someone to talk to for that long is frightening.
‘My son told me this morning, “Mammy, I can’t move my knees”. He suffers with his toes, his ankles, his knees, his wrists and his elbows. His two knee-caps are like balloons today, really swollen and hot.’
She added: ‘We’ve just been once to Crumlin. I saw how hard they all work there; there’s just two consultants. We were seen in four months. I thought that was bad but people told me we were lucky.’
Killian goes to pre-school but often needs a few days rest after even half a day with his friends.
The letter Jennifer received read: ‘Your appointment on 11/07/17 has been cancelled… Our clinics remain over-subscribed and due to the insufficient staffing numbers we have no alternative but to reschedule your appointment.’
She said: ‘I was astonished. He’s just a child, when it gets bad Killian can’t walk, he can’t weight-bear. It’s very hard to see that, and then you see the incompetence of the HSE when they don’t have people to help you. I’m just so cross.’
The immuno-suppressant drugs are administered by injection, but Killian fell ill soon after starting the regime.
‘He ended up in A/E with an extremely high temperature. His immune system was down, obviously. The worrying thing is he got really sick suddenly, no-one in Limerick knew really what to do because they don’t have a paediatric specialist so they had to ring Crumlin.
‘And then to be told we are going to be eight months waiting to see the experts. We just thought, “what do we do if he gets worse?”’
A spokeswoman said: ‘Our Lady’s Children’s Hospital, Crumlin regrets that, on occasion, it has to reschedule outpatient clinics.’
She said patients are clinically reviewed and appointments are based on need. Crumlin has applied to the HSE for more money to recruit extra consultants, she said. The HSE referred queries to Crumlin.
Jennifer and her husband have three other children, none of whom have juvenile arthritis. But she said that this makes travelling to Dublin difficult.
Her husband, for example, had booked a day off to travel with them on Tuesday, and babysitters were arranged.
Jennifer said without the support of advocacy group ICAN – Irish Children with Arthritis Network – she would not have known how to challenge the appointment cancellations. Following advice, she contacted the Patient Advocacy service at Crumlin and succeeded in getting a new appointment in August.
She said: ‘We’re very new to this. We shouldn’t have to do this. He’s just a child, it’s hard enough to see
‘I saw how hard they all work at Crumlin’
‘We’re very new to this. He’s just a child’
your child waking up in the morning saying “I can’t walk”.
‘I had a bee in my bonnet, I think I’ve phoned them maybe 40 times. It’s not that I think my child should get an appointment over someone else, but he’s so sick. I’m still flabbergasted.’
Killian is on another waiting list to see an ophthalmologist in Limerick. There are 3,759 people on the list – with 876 waiting more than one year.