Transition from child to adult services:
WORD Day 2020 #ThursdayWordDay
On 18th March 2020 we'll be adding our voices to the thousands around the globe raising awareness of JIA and other rheumatic diseases in children as part of #WORDDay2020. WORD Day stands for World yOung Rheumatic Diseases Day.
You can find out more about last year's WORD Day and why WORD Day was set up here and a particularly good article about why raising awareness is so vital here.
In the run up to WORD Day 2020, the WORD Day team will be starting conversations about various aspects of living with childhood rheumatic diseases, of which Juvenile Idiopathic Arthritis (JIA) is one. JIA affects 1 in every thousand children which means that in the UK alone there are around 15,000 children and young people living with the condition.
This week, Juvenile Arthritis Research joined in the #WordDayThursday discussion on social media and this is what our followers told us either by responding to our social media posts or getting in touch directly:
- "Our lives become more complicated" (juggling study with a job and managing the condition)
- “There isn’t much to support adults with JIA”
- "The toughest time is between childhood and adulthood, I was lost in the cracks [between child rheumatology and adult rheumatology services]"
- “it’s very scary to be left without care”
- “Lack of consistency in care between childhood and adulthood”
- “As an adult with JIA, it has affected the type of work I can do and my choice of career. I think things have improved more recently with improved treatments for children.”
There were also concerns that some doctors reclassify their condition as RA when it should remain as “adult with JIA”
We also heard of a good experience of where planning ahead with a long transition period between child and adult services helped a lot.
Do join in the #WORDDay2020 conversations with us on our own social media channels and by following the @WORDDay_org directly on Twitter too.