My name is Julia Sutton and my daughter was under the care of the PMH Rheumatology Department for many years.
At four years of age she started to develop the symptoms of a rare joint disorder. Pretty soon we were Rheumatology frequent flyers and strategies for joint pain relief became part of our daily lives.
I think PMH has a brilliant rheumatology department with an outstanding team. We were also been impressed with the work of the Pain Unit at Fremantle Hospital (since shut down). Both hospitals stretched their limited resources a long way.
PMH needs a dedicated Pain Unit run by a specialist in children’s pain. This would have made an enormous difference to our family as it would have provided us with important information and support. One of my goals is to help make that happen.
I think that one of the things that is also missing is organised parent support – which is probably best arranged from within our own parent community.
So that is the reason for this project. To connect, to inform, to share and to help each other. Together we can also help build a better system of care for children living with chronic pain.
What would you like included on this site? What do you wish you had learnt a bit earlier? What is your experience? I would love to hear from you.