The Senedd played host to the event to chime with World Young Rheumatic Diseases (WORD) Day – an international day to raise awareness that children and young people can get arthritis too.
First Minister Eluned Morgan met and spoke with young people and families about their experiences of juvenile idiopathic arthritis (JIA) and the challenges they experience.
Hywel Evans, policy and engagement manager of Cymru Versus Arthritis, said: “We’re delighted the voices of young people affected by arthritis were heard by MSs from across Wales at the Senedd. Children with arthritis face a range of challenges, but one of the biggest issues is navigating school life.
“With the Welsh Government set to review its guidance to schools regarding how they support children with healthcare needs, the event at the Senedd is an important opportunity for MSs to hear directly from young people with arthritis about their experiences. We also shared with MSs bilingual resources we have developed with other arthritis charities for teachers, including Individual Healthcare Plans (IHPs), to help them provide better support for children with arthritis.”
Cymru Versus Arthritis say that schools are required to ensure that children with any medical condition or disability are enabled to play a full part in school life. An IHP can help give schools the information needed to achieve this. The Welsh Government’s guidance for schools’ use of IHPs is due to be reviewed and updated in 2025.
Imaani Khan, 10, was diagnosed with arthritis when she was 3. Imaani attended the event and explained to MSs’ the impact of arthritis on school life. She said:
“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.”
Holly Ames was diagnosed with juvenile idiopathic arthritis age 10. She is now 15 and has been able to access support in school. She reflected on the difference it has made.
“It does affect my education from time to time due to feeling isolated. My condition makes school harder on a physical aspect due to the distance between classrooms.
“The help I get ranges. If I get a flare up, I can ask for room changes downstairs. All my teachers allow me to leave lessons five minutes early and they are all aware of my capabilities in lesson.
“I get extra time in my exams and tests as well as being sat in my own room in the exam hall. This is so I can do all my physical and occupational therapy without worrying what everyone else thinks.”
Elinor Tuckey, Cymru Versus Arthritis’ Young People and Families Manager across Wales, explained the impact arthritis can have on a young person’s education.
She said: “More than 10,000 children and young people under the age of 16 live with juvenile idiopathic arthritis (JIA) across the UK, 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.”
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