Sally's story: Navigating the gap between children's and adult arthritis care

Sally Tyndall, 21, from Belfast, was diagnosed with polyarticular juvenile idiopathic arthritis (JIA) when she was seven. She says that transitioning from children’s services to adult services was difficult and, initially, made her feel uncertain, nervous and on her own with her condition.

Arthritis has shaped me from childhood

I’ve lived with polyarticular JIA my whole life. For me, arthritis is something that has shaped every stage of my childhood, education and, now, early adulthood.

I had inflamed knees and hands when I was around two, the hospital put it down to ganglion cysts and growing pains but it didn’t get any better so, when I was six, mum and dad took it further and we went to A&E. My left knee was so painful I couldn’t put my foot to the ground so they initially thought it was a fracture but x-rays and scans showed inflammation. After more tests I was sent to Northern Ireland’s only children’s Rheumatology department at Musgrave Park Hospital who knew straight away it was arthritis.

I was in and out of hospital and, when I was at school, I was the person in a wheelchair or on crutches, watching PE from the side-lines but that just made me more determined. I’ve never let arthritis stop me.

Tough transition from paediatric to adult rheumatology care

My healthcare team has been a constant in my life and the transition from paediatric to adult rheumatology was much harder than I expected.

The children’s services team were, to me, friends who understood how my condition affected every part of my life not just medically, but emotionally and socially too. So, being discharged via a call from a doctor I’d never met was incredibly difficult.

It did feel like a gap in the system rather than a reflection of my paediatric team, but it left me feeling suddenly alone with this condition. For years, I had a safety net, a team who knew me and who I could reach out to, and losing that suddenly made me feel vulnerable.

That structural gap between paediatric and adult services needs better coordination and I believe introductory transition clinics would make a huge difference, allowing young people to meet the adult team before discharge, understand how things work, know who their point of contact is, and feel prepared rather than cut off. I know Arthritis UK are working to bridge that gap with dedicated transition sessions and clear guidance. Growing up with arthritis is challenging enough, the healthcare system shouldn’t add to that, it should walk alongside us.

Uncertainty over arthritis care adds to stress

The uncertainty, lack of guidance, led to unease because, with a long-term condition like inflammatory arthritis, consistency and access to support are everything. Not knowing when your next appointment will be creates stress which can make my symptoms worse.

I had my first appointment with adult services in August 2025 which reassured me as the consultant was kind and understanding. They did say my next appointment would be three months but I didn’t get to see them until April which was a long wait.

They have been great since though, doing bloods, MRIs and x-rays. I’m glad because when I was transferred to adult services it was like being treated as a new patient again and, when I initially called rheumatology, I was told it could be four years before I even got an appointment which would not have worked for my medication.

After starting on steroids and methotrexate, six years ago they put me on biological treatment called rituximab which means I’m on a drip all day, then two weeks later I’m back for another day, then that’s my medication for the year. So a four year wait just to see someone would have had a massive impact.

Support is vital when you live with arthritis

I was in and out of hospital when I was first diagnosed and that’s where I first came into contact with Arthritis UK who were brilliant, making a school in the hospital for us and it was helpful for my parents to have other parents to speak with.

What’s been hugely important to me has been the support of my family who have been with me all the way. I do suffer pain and fatigue is a huge factor, in the past mum had to inject my medication every week, my Dad had to carry me when I couldn’t walk and my sisters had to help when I was tired, they’ve all been a huge part of my story.
Also, getting a statement in place at school so that I had additional support, like a classroom assistant and rest breaks in exams, was so important. It was at big school that I realised I was different and, for a while, I didn’t want anyone to know but at 16 I realised arthritis is part of who I am, it’s my life experience, it’s made me tougher, more resilient and I wouldn’t be who I am without it.