Arthritis South Australia is funding the state’s first dedicated paediatric rheumatology nurse, in response to the growing number of children suffering from arthritis.
About 600 to 700 children have been diagnosed with arthritis in South Australia creating more demand for paediatric rheumatology services.
The nurse will be based at the Women’s and Children’s Hospital and will support South Australia’s only paediatric rheumatologist.
Arthritis SA chief executive officer, Julie Black, said the need for the specialist position was clear.
“In South Australia there is only one paediatric rheumatologist and it can take up to five months for parents to get in to see the specialist,” Ms Black said.
“The longer you take to see a specialist often the more impact arthritis can have on these children.
“Under the national guidelines they believe that you should be seen within about a month because children are growing, their bones are changing, so the sooner they can be seen the better.”
Lucy Byham, 10, was diagnosed with arthritis last year.
Her mother Melanie said she initially did not understand why her daughter resisted exercise and movement.
“We noticed that Lucy had swollen knees and we took her to the doctor to our local GP who then referred her for X-rays and ultrasounds,” Ms Byham said.
“Then when they showed a build up of fluid on the knees we got the referral to the rheumatology specialist at the Women’s and Children’s Hospital, even then I didn’t expect to get the arthritis diagnosis.
“It came as a huge shock. I was just stunned when we got the diagnosis.
“In a way it was good to get a diagnosis for her because we knew that there was something that wasn’t right. So at least we could move on and get the treatment and she’s responding really well to all her treatments.”
Ms Byham welcomed the decision to hire a specialist nurse, as they would help support families and prepare them for the treatment programs.
She said the treatments her daughter has received made a big difference to her quality of life.
“Lucy didn’t like to move too much at all beforehand … she didn’t like walking to school. She didn’t like packing up at home. She would always say that her legs were tired and her hands were tired,” Ms Byham said.
“The treatment has made a huge difference.
“Lucy now runs rather than walks, she skips, she loves being on the monkey bars at school, she takes ballet classes, she swims, so she’s a different child now.”
Nurse to provide direct support for parents
Ms Black said the nurse would be a direct support for parents, who sometimes had to wait weeks to speak with the paediatric rheumatologist.
“It’s about having someone who can triage what’s going on, to be able to be at the end of the phone to talk to a parent,” Ms Black said.
“At the moment with only one paediatric rheumatologist in the state she often can’t get back to families as quick as what she would like, so having someone who can talk to the families, answer their questions, reassure them and then have those that need to be seen quicker moved up the list.”
She hoped having the specialist nurse would see children with the disease spend less time in hospital.
“This is going to be a pilot. We want to do the research and have the evidence to show what a difference it makes.
“What we’d love to see is less time in hospital, reduced admissions and also reduced waiting times, so we’ll be monitoring that very carefully to get that evidence to show that this does work.”
The selection process to appoint the specialist nurse is underway.