There can be many different types of treatment for arthritis. It's important to be aware of what medication your child is taking and to know where you can go if you have any questions.
Talk to your rhemumatology team
Your rheumatology team will give you information on your child's condition and their management plan. Write down any questions and bring them to clinic.
Make sure you have the contact details of your rheumatology team, especially the clinical nurse specialists, so you can call them if you have any questions or concerns that can't wait until clinic.
Contact your rheumatology team (again usually through the clinical nurse specialist) if you're concerned with your child's joints or other aspects of their health that you think could be linked to their condition. Get in touch if you have concerns with medications, including around side-effects.
Being organised is important. There can be quite a few different appointments to manage. Recording these on a calendar, diary or phone is sensible. Keeping a file with all relevant letters in can be helpful.
It's helpful to call the hospital rheumatology department well in advance if you can't make an appointment.
Involve your child in their treatment
It's important for your child to become increasingly involved in their own treatment.
As they get more independent, they may become less keen to exercise or take medicines, but this will most probably lead to problems.
Often young people with arthritis will be more mature than their peers because of what they're having to deal with. Involve them in decision making, for example encourage them to ask questions including in clinic. Make sure they understand the reasons for their treatment and the risks involved with stopping it.
Growing up also means moving from child- to adult-centred care. This should be a gradual change towards attending hospital appointments on their own and becoming involved in making their own decisions about treatment.
Your child should begin a gradual move towards independence early, at around 11–12 years old. Remember, paediatric rheumatology clinics are safe places for them to start practicing communication and problem-solving skills with health professionals that they usually get to know well – these are all important for the world of work and adulthood.
As a parent – who may have given up a lot to help your child through illness – it can be hard to let go. You need to be supportive and respect your son or daughter’s move towards adulthood.
One thing that parents often find difficult is letting their child spend time alone with their rheumatology team. It’s important to realise they have a right to confidentiality, and healthcare professionals will only break this if your child or someone else is at risk of serious harm. It may help you to talk this over with your hospital rheumatology team.
See our section on accessing healthcare.
Give the rheumatology team feedback
Services usually ask for feedback every so often on how they're functioning and to improve the service as needed. However, other feedback (positive and negative) on issues as they arise can be very helpful to improve/protect aspects of a service.
Don’t be afraid of saying how you would improve the service. Your comments can be useful evidence that an improvement is needed, which the health professionals in a service may be requesting.
Feedback (positive or negative) can be informal, by talking to the team members, or through patient experience teams, sometimes called Patient Advice Liaison Service (PALS). Usually their contact information will be displayed in clinic, but ask for this if it's not clear.
Feedback is very helpful for managers and clinical leads of a service. Remember the health professionals are all paid to look after your child and support you as parents/carers.
Remember that you’re not alone – your paediatric rheumatology team is there to help.