Arthritis UK demands change for young people with arthritis on international WORD Day

19 March 2026

Bridging the Gap: Urgent Call to Improve Arthritis Care for Young People in Northern Ireland

This World Young Rheumatic Diseases Day (WORD Day) (March 18) Arthritis UK hosted an awareness event at Stormont. The charity called for immediate action to ensure children and young people living with arthritis in Northern Ireland receive the care they deserve.

Arthritis UK welcomed young people and their families to share their experiences of growing up with Juvenile Idiopathic Arthritis (JIA). MLAs, health professionals and families heard first-hand the very real health and social impacts that failure to recognise, diagnose, and treat the condition can have.

Moved by their stories, Diane Dodds MLA, demonstrated her support by advocating for greater awareness and increased knowledge of arthritis across the health system and specifically for a managed transition between paediatrics and adult rheumatology.

A recent survey produced by Arthritis UK Northern Ireland ‘From Breaking Point to Recovery: Prioritising Musculoskeletal Healthcare in Northern Ireland’ revealed one of the greatest challenges that young people with arthritis face, is the transition from paediatric to adult rheumatology services. 

This is true for Sally Tyndall, 21, from Belfast, who was diagnosed with JIA at only 7 years of age. Sally was cared for by paediatric rheumatology services until she received an unexpected call informing her that she had been removed from the service. To Sally’s shock, she was provided with no information or guidance on how to move into adult services and was left to manage her condition alone.  

Sally, who spoke at Arthritis UK’s WORD Day event, said:

"For years I had a safety net, a team who knew me, so suddenly losing that made me feel vulnerable. The phone call left me shocked and honestly quite hurt. It felt abrupt and impersonal after such a long relationship with a team who had supported me through so many milestones.

"Since being discharged, I’ve experienced flares without having a clear team to contact. My first adult appointment I brought my mum along, which shows that even as a young adult support still matters! This doesn’t feel like an individual failing, it feels like a structural gap in the health service that needs better coordination, for all young people growing up with arthritis."

Unlike the rest of the UK, Northern Ireland does not provide a managed transition between paediatric and adult rheumatology.  Arthritis UK is calling for bi-annual clinics to provide a bridge into adult services and ensure there are no delays to a young person’s ongoing care.

Sara Graham, Head of Arthritis UK Northern Ireland, stressed the importance of receiving timely diagnoses alongside continual and reliable healthcare provision.  

Sara said: “We are grateful for the support today, and for the opportunity to gather a community that is united by the same cause, raising the public profile of young people living with arthritis and all rheumatic diseases.  However, there is still much that needs to be done to ensure that all young people are taken seriously and receive the comprehensive care that they deserve. 

“Children absolutely need to move from paediatric to adult rheumatology services at the appropriate age, yet there is little support to help them make that move, which impacts their physical and mental health. We are asking the Department of Health to ensure Health Trusts embed a managed transition service.”

Find out more about the charity’s services and the support it provides to people at all ages with arthritis.

About Arthritis UK

Arthritis UK is the leading arthritis charity, changing lives through research, campaigning and support. 

Over 10 million adults, young people and children in the UK live with arthritis. That’s one in six of us living with the pain, fatigue, disability, mental and financial strain it can cause. Many more live with arthritis but remain undiagnosed, untreated and unsupported. 

We know the impact of arthritis can be huge, affecting the ability to work, care for family, move free from pain and live independently. Yet for a condition affecting so many, it’s poorly understood and far too little is done. That’s why we invest in life-changing research into better treatments, support people through the daily challenges of life with arthritis, and campaign on the issues that matter most to people living with it. 

At Arthritis UK, we won’t rest until everyone with arthritis has access to treatments and support they need to live the life they choose, with real hope for a cure in the future. Find out more at: www.arthritis-uk.org 

Arthritis UK. For a future free from arthritis.  

About juvenile idiopathic arthritis

Juvenile idiopathic arthritis (JIA) is inflammation (swelling) of one or more of your joints. It first occurs before your 16th birthday. 

There are different types of JIA and symptoms vary between the different types. Knowing which type you have helps assess the likelihood you'll grow out of JIA. 

JIA may be difficult to control in some people, but most cases will be well controlled with treatment most of the time. If you have arthritis as part of another condition, it's often managed in a very similar way to JIA. 

More information about WORD Day

Please visit: WORD Day – Raising awareness and knowledge to help first and foremost in early diagnoses of young rheumatic diseases