East of England Fun Day (March 2018)
Family fun at Fakenham Racecourse! This was the third year that NRAS have co-hosted a fun-day with the East of England paediatric rheumatology team for children with JIA and their families. We saw a lot of new families this year and welcomed friends we have met before.
There was messy play, a great photo booth and this year, Anne and Lorraine bought along their face painting kit and most of the children left fun day as tigers or butterflies! This event is not just for parents and children to meet and share, it is also a time for health care professionals to share information about the regions services, future developments and gain valuable feedback from service users. Dr Peter Bale presented a network update to parents and talked about future developments for the region, and all the parents voted on a regional service name. The chosen name is “CHEERS” – Children and Young people’s East of England Rheumatology Service. The new service name now needs a logo. Please get creative and send a picture of your design to us at NRAS by the end of April. There is a prize for the chosen design.
Julie Brooke an occupational therapist, presented on Transition. This describes the process children go through when they move from paediatric to adult care. Julie discussed the differences between paediatric and adult rheumatology services and the Red to Green programme used by the East of England team.
Parents expressed concerns about the delays in diagnosis, they felt general paediatricians and GP’s needed more education and awareness of JIA. The team are addressing this and have already delivered two education sessions to GP’s on JIA and paediatric rheumatology conditions in Norwich and Cambridge.
Thank you to all the healthcare professionals who came along and all the families and children who made the day a great event. We look forward to seeing you all again soon.