Members of the Senedd will today [March 18] hear from young people, their families and charities about a condition too often dismissed as an older person’s disease than can make school life more challenging.
The event is being held to chime with World yOung Rheumatic Diseases (WORD) Day – an international day to raise awareness that children and young people can get arthritis too.
MSs will have the opportunity to talk to 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 will be 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’ll also be sharing 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.”
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.
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.”
Cymru Versus Arthritis’ Young People and Families team provides advice, one-to-one support work and events for young people and families, from newly diagnosed workshops to online self-management events, family events to youth residentials.
JIA is an autoimmune disease that can occur in children of any age under 16 that causes painful, swollen or stiff joints that can be debilitating, requiring prompt intervention to prevent long term joint damage.
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.
To find out more about juvenile idiopathic arthritis or Cymru Versus Arthritis and the services it provides, please visit www.versusarthritis.org
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