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Lorna Rothery interviewed Lynne Woolley, Head of Young People and Families at Versus Arthritis, to discuss the challenges surrounding juvenile idiopathic arthritis, a chronic inflammatory condition affecting young people under the age of 16
What are some of the key challenges faced by clinicians, patients, and their families regarding the diagnosis and treatment of JIA?
Families often express frustration regarding the lengthy process of obtaining a diagnosis for their child. They frequently find themselves being bounced around emergency departments, community care, and wider specialities over several years. Common explanations given include growing pains, sports injuries, or lingering effects from an infection, suggesting that the issue will resolve on its own in a few months. As a result, families can feel dismissed and unheard.
They know something is wrong, and their child is telling them the same, but their concerns are often overlooked or misdiagnosed. This can lead to irreversible damage to the joints. Other complications, such as uveitis – an inflammation of the eye – can also lead to sight loss if left untreated. When JIA is not diagnosed early, uveitis is not screened for and not treated early. Therefore, early diagnosis is crucial. Unfortunately, many families are left waiting too long to see a rheumatologist and obtain a proper diagnosis. It’s important to understand that conditions like juvenile idiopathic arthritis (JIA) do not always show up on blood tests, which can prolong the diagnostic process.
A notable report titled ‘Joint Care?’ by the National Confidential Enquiry into Patient Outcomes and Death (NCEPOD) reviewed over 290 sets of case notes for children in England, Northern Ireland, and Wales, particularly regarding their healthcare experiences. NHS England states that patients should be seen within a ten-week timeframe for receiving a diagnosis from a rheumatologist; however, only 41.6% of children were seen within this timeframe, with the longest wait being 175 weeks.
The report emphasises the need for increased awareness, enhanced training for healthcare professionals, and facilitating easy referrals to rheumatology services. These changes could help ensure that children receive timely care.
For clinicians, particularly primary care providers such as GPs and physiotherapists, recognising that while musculoskeletal (MSK) conditions are common (approximately one in eight), wider system (skin, eyes, brain, heart, lungs, kidney) involvement, joint inflammation – although not always visible, signs of inflammatory diseases (fever, lethargy, weight loss, night sweats, hair loss, mouth ulcers) or limping signal the need for further investigation. Versus Arthritis focuses on addressing the training gaps in MSK among healthcare professionals through our Professional Network. In the courses and assessment toolkits, we stress the importance of holistic assessments and history taking for appropriate referrals to specialist teams.
When treating JIA, timely access to appropriate medications is essential after diagnosis. It can take time to find the right treatment option for a young person, which can mean trying several different medications, and it can be frustrating and painful. Families often navigate through multiple treatments until they land on one that works for them. A child may enter remission but later experience flare-ups, restarting the process.
Many young patients are prescribed medications that don’t work for them, leading to prolonged periods without effective relief, often accompanied by side effects that impact their quality of life. Therefore, accessing the right medications promptly is crucial for effective treatment. Our aim is to enhance research and investment to better identify the most effective medications based on each child’s specific type of arthritis and individual biology.
Investing in research is crucial for children and young people. Versus Arthritis is the largest dedicated funder of arthritis research in the UK, currently investing £12 million in arthritis research for children and young people.
Workforce reports from the British Society of Rheumatology highlight the scarcity of psychological support in paediatric and adult care. As a charity providing self-management support, we see the life- changing impact holistic care, peer support and being part of a community can have. Treatment and care should address not just physical symptoms but also help individuals cope with the long-term implications of their conditions. While some young people manage well, others need more support with issues like needle phobia, medication side effects and at the point of diagnosis, for example. And this extends to school life. We’ve produced online resources for teachers to help them support children and young people navigating school life.
Many parents face reduced work commitments, navigating hospital visits, managing the admin of supporting a child living with a long-term health condition and providing care at home. The unpredictability of arthritis complicates the balancing act of responsibilities at home and work, which can be overwhelming for families.
Would you say that there is still a lot of work to be done in terms of raising awareness about the condition?
Feedback from young people with arthritis often reveals a lack of awareness around the condition. Many people are surprised to learn that a child has been diagnosed with arthritis, and common misconceptions lead to stigma and feelings of isolation. Young people express a strong desire for better understanding and support from their peers, teachers and society as they navigate their condition. Many don’t realise that juvenile idiopathic arthritis is an autoimmune condition that requires treatment, and not ‘just stiff joints’
This year, the Department for Education will review statutory guidance ‘supporting pupils with medical conditions’, which hasn’t been updated since 2016. Advocates, such as the Health Conditions in School Alliance, hope this will result in clearer guidance and better support for students with long-term health conditions, enabling them to thrive academically and socially while managing their health effectively.
What more could be done at the policy level to improve things for patients and also clinicians?
Arthritis should be recognised as a condition affecting people of all ages, including children and young people. Yet, it is often overlooked in health discussions and strategies, which is a concern. We need to ensure that arthritis is included, along with clear plans to reduce waiting lists, invest in research, and improve access to treatments.
Currently, about 10,000 children under 16 have juvenile arthritis, but this number is based on limited data. We also lack information on those aged 16 and over. JIA can continue to affect you into adulthood and be a lifelong condition to manage. Effective data collection is crucial for making informed care decisions and ensuring equitable healthcare. The NCEPOD report emphasises the importance of enhanced access to data for prompt treatment and accurate diagnoses.
Transitioning from paediatric to adult care or teenagers going straight into adult care can be an isolating and difficult period of adolescence. Effective transitional care models exist, and we must implement them to support young people during this critical phase as they navigate adulthood and manage their conditions. There is still much work to be done to improve this often-neglected area of care.
What would be your takeaway message for readers affected by JIA?
We are here for people who need us. Versus Arthritis hosts events for children, young people, families, and adults, both online and in local communities across the UK. We also offer one-on-one support for individuals who wish to discuss their current situation and seek advice or guidance.
It’s essential to share stories, as many people enjoy reading about the experiences of others. This helps them realise that they are not alone. Receiving a new diagnosis is a significant life event, and it often feels like navigating a steep learning curve. Connecting with others, learning from their experiences, and understanding that what you’re feeling is perfectly normal can be incredibly reassuring.
There is light at the end of the tunnel, and we believe that no young person should face arthritis alone. That’s why the Young People and Families team at Versus Arthritis works tirelessly to provide information, support, and jam-packed events for young people under the age of 25. Anyone can come to us, and we will connect them with the information and community they need to make these vital connections whilst navigating life with arthritis.