Supporting children and young people living with arthritis
09 February 2024
We believe that no young person should face arthritis alone. That’s why our Young People and Families service works tirelessly to provide information, support, as well as jam-packed events for young people under the age of 25.
Want to see a glimpse of what we do? Here Dawn, a Young People and Families Worker at Versus Arthritis, explains how she supports young people in Birmingham Children’s Hospital and the local area.
Young people and arthritis
There is a common misconception that arthritis just affects older people. But that couldn’t be further from the truth.
We know that around 12,000 children under 16 years' old have been diagnosed with juvenile idiopathic arthritis (JIA).
“The bottom line is young people do get arthritis,” says Dawn. “They’re experiencing life as a young person and all the challenges that brings — in terms of cyberbullying, relationships, and career decisions — alongside a long-term health condition.
“What they tell us is that they want Versus Arthritis to support them and to help tell their story, so it doesn’t feel like they’re carrying the burden of educating others.”
How do we support children and young people with arthritis?
Day in and day out, our Young People and Families Service (YPFS) offers support to children and young people living with arthritis and their families.
“We’re here to support them, give them the information they need, and raise awareness that young people do get arthritis, so it’s easier for them to have those conversations with GPs and school,” says Dawn.
“We also run events and activities that allow young people to develop peer support and reduce isolation. We want to empower them and help them gain confidence in handling life with a long-term condition.”
Want to see what they get up to day-to-day? Here are just a few ways Dawn and the team help young people living with arthritis:
Hospital support
Navigating hospital appointments can be tough at the best of times, but it can be particularly intimidating as a young person. This is where Dawn can help.
Our Young People and Families service works with hospitals across the UK, helping to bridge the gap between hospital staff and young people.
We support young people and their families at all stages of their journey — from offering additional support at the point of diagnosis to supporting young people as they move to adult services.
“It’s about helping the hospital staff better understand the young people and their needs,” explains Dawn. “We offer that bridge between what young people and families are asking for, and what hospital staff need.”
"Another challenge that may come up is the transition into adult hospitals. Most of our young people go to one hospital as a child and, as they grow up, they get moved to another for adult care. As you can imagine, that can be quite a tough time.
“Quite often, I’ll work with young people and help them prepare for that change. I might go on a visit to the hospital with them, so they feel ready. I might chat to them about going to the doctors on their own and preparing for an appointment. Or I might chat to the parents about how they need to be brave and let the young person do this on their own.
Dawn and the Young People and Families team also offer one-to-one support outside of hospital. They often check in with young people and families, responding to questions about everyday topics like moving to a new school or college. “Sometimes parents themselves might need a bit of additional support. We recognise that a diagnosis of arthritis can affect the whole family.”
“Peer support helps to develop self-esteem, reduce isolation, and give a safe space to share thoughts about their conditions, whilst having fun”
Activities and events
Wish you knew another young person with arthritis? Want to get more advice and information? Or just fancy having fun and trying something new?
Whatever you’re after, we host a range of incredible activities and events specially designed for young people with arthritis.
Some of our various events include:
- Residential weekends away.
- Activities such as mini golf, archery or white-water rafting.
- Virtual meetups, such as our online book club.
- Art and self-management activities.
- Workshops on topics such as self-management and relationships.
"It was just so nice to meet other young people living with arthritis or related conditions. I felt so included and accepted.”
“Having someone who ‘gets’ it and understands what they're going through can sometimes be the difference between coping with arthritis or not," says Dawn. “These activities give our young people the chance to learn, share and not feel so alone. They're at the heart of what we do.”
We know that people's symptoms can fluctuate day-by-day, so our activities are always designed with accessibility in mind. Our activities and events happen across the UK but if you can’t attend in-person, don’t worry. There are plenty of online activities you can access from the comfort of your own home.
Resources
Looking for advice or information about living with arthritis? Our Young People’s team works closely with young people to create handy resources packed with advice on everything from navigating schoolwork to looking after your mental wellbeing.
“We support young people with difficulties at school. For instance, we created a booklet for teachers ,” says Dawn. “This explains some of the different conditions, the challenges a young person may experience, and what teachers should be aware of.”
Arthritis and school
Influencing and investing in research
We support children and young people living with arthritis right now, but we also want to see meaningful changes in the future.
For that reason, we also raise awareness of arthritis and influence people in power to help improve the care of children and young people.
“We’re making sure young people’s voices are at the heart of our charity’s work, such as our campaigns and research – we’re currently investing over £12 million in arthritis research for children and young people” adds Dawn.
We also provide opportunities for young people to get involved and get their voices heard through our Young People’s Panel. This is a space where young people (aged 16-25) who are living with arthritis can influence our support, campaigning, and research work.
At this year’s Party Conferences, we were joined by Jasmine, a young person living with arthritis from our Young People’s Panel.
“It was great to... actually be able to speak to the people ‘higher up’ who can help us to implement change for people living with arthritis. Arthritis needs more awareness, and it should be coming from the people who know best: those with the lived experience.”
We have also created Your Rheum, a Research Advisory Group for young people aged 11-24. This gives young people the chance to shape adolescent and young adult rheumatology research in the UK.
Are young people involved in our work?
“At the heart of all our work is young people’s voices and involvement,” says Dawn. “Sometimes we’ll do this through our Young People’s Panel, who we can take ideas to, and they can provide their input. Other times, we’ll talk to young people at our residential events and ask them what they need.”
“We also have a fantastic team of young peer volunteers who help us deliver activities. They really are an inspiration for other young people.”
We’re here for you
If you want to see what’s going on in your area just email us at YPFSUK@versusarthritis.org or connect with us on social media.
Remember you can also
- call our helpline.
- join our online community.
- download our Arthritis Tracker app for teens and young adults.