Talking to your child's healthcare team

Your child’s healthcare team

Having a good understanding of JIA and the medications involved is a great way to support your child. If you have concerns about anything to do with your child’s treatment, don’t be afraid to discuss them with their doctor. You are a vital member of your child’s healthcare team – you know your child best and may notice things that might be missed by medical professionals. The team may include:

  • Paediatrician or rheumatologist
  • NZ Paediatric Rheumatology Team (see below)
  • Ophthalmologist (specialist eye doctor)
  • GP
  • Nurse
  • Physiotherapist
  • Occupational therapist

Other services:

  • Orthotics service
  • Pharmacist
  • Social worker
  • School teachers
  • Arthritis educator
  • Dietician
  • Counsellor or psychologist

The New Zealand Paediatric Rheumatology Service (NZPRS) is funded by the Ministry of Health to provide access to speciality care for children and young people with JIA and other rheumatological conditions. The service has two teams. The Starship team covers the top third of North Island, whilst the Hutt team cover the lower third of North Island and all of South Island. The NZPRS will work with your local doctor to ensure that your child receives the most appropriate treatment for their condition. The NZPRS attend outreach clinics around the country.

Preparing for appointments

  • Prepare in advance – discuss with your child what they want to talk about and take a list of questions or concerns with you.
  • Take a friend or other family member with you if you can. That extra pair of eyes and ears can be helpful.
  • Take notes during or immediately after the appointment, or ask your doctor to write down anything that’s important.
  • Don’t be afraid to ask questions or to say if there’s anything you don’t fully understand.

Questions to ask your doctor

It might be helpful to write down questions as you think of them, so that you’re well-prepared for each appointment. For example:

  • Why is this medicine needed and how can it benefit my child?
  • How does it work?
  • How should the medicine be taken, i.e. how much? how often?
  • What side effects might it have and what do we do if they occur?
  • What tests, if any, are needed while taking this medicine?
  • How long does it take to achieve the maximum benefit?
  • How long will my child need to stay on the medicine?
  • When and how will the effects of this medicine be reviewed?

Being organised

Children with arthritis need regular check-ups to monitor their response to medications, manage side effects, and make sure that their treatment is still appropriate. How often children see their doctor will depend on the severity of their condition, the medication they take and how recently they were diagnosed. Be prepared for their sometimes to be a few people in the room, this is because your child may benefit from the input of different team members.  Encourage your child to wear shorts and short sleeves to enable examination.

Here are a few tips to make life easier for you and your family:

  • Keep copies of all correspondence to and from doctors, teachers, and anyone else involved in your child’s care.
  • Keep an up-to-date record of your child’s medication and doses. This will make ordering repeat prescriptions easier and means that others can supervise medication, if needed.
  • Prepare for flare-ups – IT can be helpful to have NSAIDs (such as Ibuprofen) on hand and non-medical pain management strategies at the ready, such as wheat bags and relaxation techniques.

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