I first got involved with Arthritis New Zealand after being diagnosed with Juvenile Idiopathic Arthritis (JIA) when I was ten years old. The organisation enabled me to connect with children my own age and to understand that I was not alone – which is the main reason that I have kept the relationship going and try to help with the Youth Leader Programme and at the Children’s and Teen’s camps when possible. I gained a lot from the camps and interactions with children my own age myself, I would like to give that back.
Being involved with Arthritis New Zealand has taught me that no goal is unattainable with the right mindset and perseverance.
Arthritis New Zealand and the Paediatric Rheumatology Team at Hutt Valley Hospital have been working collaboratively for ten years in a camp funded by various organisations for children who have arthritis.
Children’s Camp is a perfect setting for families to meet other families, to speak to the paediatric team and to participate in a range of fun activities. Many of the children and families that have been to camp have found it rewarding and inspiring, arthritis is not what defines them but actually it has helped them to become resilient and positive people that can achieve anything life throws them.
Nicola and Rachel spend many voluntary and paid hours making sure their input at camp and other collaborative projects with Arthritis New Zealand are the best services that they can offer so that all families, volunteers, and staff have a fantastic experience.
Rachel (Paediatric Rheumatology Physiotherapist) focuses on assessment, rehabilitation and education around pain management strategies.
Nicola (Paediatric Rheumatology Nurse Specialist) focuses on education, family liaison, support and transition.
How did you become involved with Arthritis New Zealand?
We work with Arthritis New Zealand to review their written material so that there is consistency and accuracy for families in the information they access. We have also given some time to put together a webinar for parents of pre-schoolers with Juvenile Idiopathic Arthritis.
When a child receives a new diagnosis, parents naturally want to explore a variety of sources of information, but it is also helpful if this information is accurate and that there is unity between the providers of information within New Zealand. The collaboration between NZPRS and Arthritis New Zealand has been powerful for families and it serves to improve a family’s journey with their Paediatric Rheumatology diagnosis.
With the Children’s Camp, there is always a Paediatric Rheumatologist, Nurse Specialist and Physiotherapist present for the education component. Also, in recent years, the NZPRS and Arthritis New Zealand have collaborated on far more projects including a teens camp and the use of digital technology to disseminate information.
Do you believe it makes a difference for the families to have you there in an informal setting?
It is lovely for us to meet with families and children outside of the more formal clinic setting. Part of providing a good and more tailored service is about getting to know your patients and their families but this takes time and the clinic settings do not always allow much time for this. We feel families and children enjoy it as well as they can see us out of our professional mode, having fun, not focusing only on their diagnosis or medication but chatting about other things too. It grows the children’s confidence in us. Families that feel they have a connection with you are also more likely to contact you when they have queries or concerns and therefore, they manage their children’s condition more confidently.
What does your team get out of the experience?
Children and families are sometimes a bit nervous in the clinic setting or when we’re talking about changes in treatment or tackling difficult issues. Volunteering to be at camp allows us all to shed that tension and be ourselves, with the focus being quite different. That enables us all to get to know each other better and create the connections to ensure we all do a good job for their children.