Bury St Edmunds Family Fun Day
The sessions with the HCPs are designed to be interactive, educational and give an opportunity for everyone to share what works well and what doesn’t for their child and their families. The open and frank discussions were a great opportunity to share practical tips as well as patient experience, all of which can make a huge difference to a family where a child has just been diagnosed with JIA.
There were some great friendships made amongst the children and it was lovey to see the teenagers interacting with some recently diagnosed younger children.
Parents discussed what was challenging for them and these included conversations on school needs and attendance, children’s behaviour and difficulties accessing certain services such as occupational therapy, as well as information on patient organisations, welfare benefits and advice. At NRAS we will be addressing many of these issues with information sheets that will be available to download in due course from this website.
On a positive note, access to the much-loved paediatric specialist nurses, Cathy, Kit and Sarah, is very easy and referrals for scans are super quick. So 10 out of 10 for the team.
We hope to see many more of you at the next family fun day in Ilkley, Yorkshire on July 15th. It is a free event open to all families but if you can’t make it there, we will see you next year, somewhere back in the East of England in either Suffolk or Norfolk.