Key Findings from the NCEPOD ‘Joint Care?’ Report, and the Path Forward

19 February 2025

The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) has recently published its report, “Joint Care?”, examining the quality of care provided to children and young adults with Juvenile Idiopathic Arthritis (JIA) in the UK. As an organisation dedicated to supporting those affected by JIA and AJIA, we acknowledge the critical findings and recommendations outlined in this report and emphasise the urgent need for systematic improvements in JIA care.

Key Findings

1. Delayed Recognition and Referral: The report highlights that symptoms of JIA are not always promptly recognized, leading to delays in referral to specialists. This can result in postponed diagnoses and treatment initiation, adversely affecting patient outcomes.
2. Inconsistent Care Pathways: There is a notable lack of standardized protocols for the investigation and management of suspected JIA cases, particularly for adolescents. This inconsistency can lead to fragmented care and variability in treatment approaches.
3. Challenges in Transitioning to Adult Services: The transition from paediatric to adult rheumatology services is often poorly managed, with insufficient planning and support. This can result in young adults disengaging from care, leading to unmanaged disease progression.
4. Limited Access to Multidisciplinary Teams (MDTs): Many patients lack access to comprehensive MDTs experienced in paediatric rheumatology, which are essential for holistic care addressing the medical, psychosocial, educational, and vocational needs of young people with JIA.
5. Delays in Treatment Due to Training Gaps: Treatment initiation is sometimes delayed because of a lack of training for patients and caregivers on administering subcutaneous injections, such as methotrexate.

Recommendations

In response to these findings, NCEPOD has made several recommendations to enhance JIA care:

• Standardized Referral Pathways: Develop clear, well-publicized referral pathways and shared care protocols within defined clinical networks to ensure timely and appropriate referrals.
• Structured Transition Processes: Implement individualized, developmentally appropriate transition plans that address medical, psychosocial, educational, and vocational aspects, facilitating seamless progression from paediatric to adult services.
• Access to Multidisciplinary Care: Ensure all patients have access to MDTs experienced in paediatric rheumatology, providing comprehensive care and support.
• Training for Medication Administration: Provide timely training for patients and caregivers on administering necessary medications to prevent treatment delays.

We are dedicated to advocating for the implementation of these recommendations and supporting initiatives that aim to improve the quality of care of young people and adults with JIA. We will continue to collaborate with healthcare providers, policymakers, and families to promote awareness, education, and the development of robust care pathways that address the multifaceted needs, as set out above, of those affected by JIA no matter what stage of their journey they are on.

The full report can be read by following the link below: