Going to school with arthritis – Young people raise awareness at the Welsh Parliament for WORD Day
27 March 2025
As part of this year’s World yOung Rheumatic Diseases (WORD) Day on March 18th Members of the Senedd (MSs) took the opportunity to hear from young people with juvenile idiopathic arthritis (JIA) and their families about their experiences and challenges at school.
Raising awareness at the Senedd
Raising awareness of the challenges that young people with JIA and their families face is vitally important to gaining the understanding and support needed to improve their lives. This is why the opportunity to talk at the Senedd with MSs directly was welcomed and taken up by some of our families and volunteers.
Our young people spoke about what it is like to live with arthritis as a young person, their experience of diagnosis and their journeys, as well as school life, which is one of their biggest concerns.
With the Welsh Government due to review the guidance for supporting learners with healthcare needs later this year, Versus Arthritis were able to highlight our bilingual resources for schools, and our young people and their families were able to engage with the MSs about their issues and needs, so that they can get the best support, experience, and achievements from their time at school.
What is WORD Day?
World yOung Rheumatic Diseases (WORD) Day is an annual awareness day that takes place on 18 March. Events are held worldwide to spotlight rheumatological conditions in children to improve earlier diagnosis, and a quick referral to specialised paediatric rheumatologists for treatment.
What is juvenile idiopathic arthritis (JIA)?
JIA is an autoimmune disease that can occur in children of any age under 16. It causes painful, swollen or stiff joints that can be debilitating, requiring prompt intervention to prevent long term joint damage.
"More than 10,000 children and young people under the age of 16 live with juvenile idiopathic arthritis (JIA) across the UK,” said Elinor Tuckey, Versus Arthritis Young People and Families Manager for Wales, “yet so many people still wrongly believe arthritis is a condition that can only develop as we get older.”
“Young people living with arthritis can encounter a range of challenges. Dealing with fluctuating symptoms like pain, stiffness and fatigue as well as the side effects of treatment can be a daily struggle. Every young person is unique, with their own set of support needs that will change over time.”
How can JIA affect a young person’s education?
Arthritis is a condition too often dismissed as an older person's disease. However it can affect all ages. Young people living with Juvenile Arthritis have very different challenges and support needs in many areas, including school life.
This is why it is so important that the voices of young people affected by arthritis were heard by MSs from across Wales at the Senedd at this event.
“With the Welsh Government set to review its guidance to schools regarding how they support children with healthcare needs, the event at the Senedd was an important opportunity for MSs to hear directly from young people with arthritis about their experiences. We also introduced MSs to bilingual resources we've developed with other arthritis charities for teachers, including Individual Healthcare Plans (IHPs), to help them provide better support for children with arthritis.”
Young people with a medical condition or disability should be able to play a full part in school life, and schools are required to ensure this. Families and schools, nurseries, colleges or any other education provider can agree on an Individual Healthcare Plan (IHP) to assist with this.
An IHP sets out any medical needs and additional support a young person may need, which might be practical, physical, social or emotional. Versus Arthritis has worked with other charities to create a specifically adapted IHP template and guidance to help ensure children with rheumatic conditions are properly supported so that they can play a full and active role in school life, remain happy and healthy and achieve their academic potential.
"School is sometimes hard because my friends don't understand my condition. I get tired playing and my friends don't. We do a lot of outdoor learning in school and sometimes I don't tell my teachers I can't do it because sometimes I feel they don't understand either."
We’re here to support young people and families
Our Young People and Families Team supports young people from 0-25 and their families.
They provide advice and information, one-to-one support sessions, and have an exciting programme of online and face to face events and activities, from webinars to family days and residential weekends.
Find out more about our Young People and Families Service
We are here for you and your family. If you want help, support or information you can get in touch. You can:
- Call our Helpline on 0800 5200 520 (Monday to Friday, 9am to 6pm).
- Talk to our Arthritis Virtual Assistant (AVA), 24/7.
- Take a look at what's on in your area.
- Join our online community
- Follow us on X, Facebook, Instagram and TikTok.