4. Your child’s healthcare team explained

In addition, children and young people will need to have a blood test and an ultrasound scan or plain x-ray (or both). Taking shorts (for example) with you to this examination will make it easier for both parties. It can be helpful at diagnosis or just after to keep a folder for storing all information in one place. It’s easy to forget names, dates and times etc. The diagnosis is the first key step in determining the treatment plan. Once treatment starts the team’s aim will be to get the condition under control and ultimately into remission. Management includes medications, in conjunction with keeping your child active to increase stamina and strength. This will enable your child to get back to their daily activities and routine as soon as practicably possible.

Consultant paediatric rheumatologist or adult rheumatologist who sees children. The consultant will carry out a full examination and ask you lots of questions. He/she might also arrange for some blood samples to be taken, as well as x-rays and/or ultrasound scans. They will be responsible for diagnosing your child and they will also give you details of what the management plan will be (what they recommend to treat the JIA including physio, medication etc.)

Here are some questions they might ask parent(s) of younger children: • What did you first notice was causing a problem for your child? • How long has this been going on? • Have you seen any different ways he/she has been doing everyday activities? • Has sleep been disturbed?

Here are some questions they might ask young people directly: • Where does it hurt?

• What makes it feel better or worse?

• When did you begin to feel the pain? • When do you typically feel pain? • Is the pain dull or sharp? • How long does the pain typically last? • Do you have swelling or redness of any joints? • What are you having difficulty doing that previously was not a problem?

Here are some questions you might ask: • Does my child really have arthritis? • What treatment will he/she need?

• What is the reason for each medication prescribed? (For example, is it a painkiller or an antiinflammatory drug?) • When should I expect to notice an improvement? • How will we know if this treatment is working? • How will we know if there are any side-effects to the treatment?

• Will he/she need regular blood tests? • How often will we need to be seen until my child is stable on treatment?

• Also how often in general will my child need to be seen?

• How and why should I get in touch between appointments?

Paediatric specialist nurse (or adult specialist nurse)

A specialist nurse is a nurse who has gained a degree of specialist expertise, knowledge and skill in a particular area. They work closely with the consultants. They are critical to the delivery of high quality care. The nurse specialist is often the key person who has regular contact with families affected by JIA and provides education and support as well as ensuring that you can see other members of the multi-disciplinary team as needed, such as the physiotherapist, occupational therapist or podiatrist.

Physiotherapist

A physiotherapist provides expert therapy to help maximise a child or young person’s movement and help them control the pain in their joints and muscles. The role of the physiotherapist is to facilitate activity and participation. They provide guidance on sports and activities. In addition, they provide advice and support on what exercises should be carried out between appointments at home and at school.

Occupational therapist (OT)

An OT can help a child to take a more active role in life through helping them in areas such as playing and learning. They will also encourage participation in everyday tasks and if needed facilitate the changes in the environment to allow this to happen.

Ophthalmologist

An eye doctor who will have expert knowledge of uveitis which is a condition that can be linked with JIA.

Podiatrist

An expert in foot health. They will typically treat a wide range of problems affecting the feet, ankles and lower legs and will do a gait (walking) examination.

Psychologist

A psychologist helps people with a number of problems, including their behaviour, thoughts and feelings.

Radiographer

A radiographer is trained in how to operate and use sophisticated equipment to take images of the inside of different parts of the body. This can include plain x-rays, CT scans, MRI scans, ultra-sound.

If you don’t understand something, please speak up. Don’t be worried about asking for clarification on something the healthcare professional has told you. They are experts in the condition, but they are not experts in your child; don’t be shy, if you are unhappy and still anxious but have run out of time, write your question down and contact the specialist nurse or consultant by phone or email as soon as you can.