Kids with juvenile idiopathic arthritis waiting too long for diagnosis

Over one-third of diagnoses of juvenile idiopathic arthritis are delayed – by up to two years after the onset of symptoms – by GPs or paediatricians, outlines a report from the National Rheumatoid Arthritis Society.

JIA is an inflammatory disease which causes chronic arthritis in children and young people and affects approximately 12,000 children (1 in 1000) under the age of 16 years. The severity of arthritis can vary from mild to extremely disabling and symptoms include stiff, painful and swollen joints. JIA is associated with other complications such as blindness which results from uncontrolled inflammation around the lens of the eye and can also significantly delay physical development in the very young, cause permanent joint damage and deformity and delay puberty.

The report notes that JIA is not just a cause of physical pain but emotional and socially as well. The impact of JIA is felt long before the opportunity for any diagnosis is made. Its debilitating nature means it can set the child apart from their peer group, can compromise ‘childhood’ and change hopes and dreams for the future.

Challenges facing the existing services include:

• Delayed referral and lack of awareness
• Fragmented services with considerable variations around the country
• Limited or no understanding in schools
• For parents, the stressful and often emotionally traumatic experiences of delayed diagnosis

 “We have always been aware that there was inequality of access to good care, and at the start of their journey with JIA, parents have no idea what ‘good’ looks like,” says Ailsa Bosworth, chief executive of the National Rheumatoid Arthritis Society, who has lived with rheumatoid arthritis for over 30 years. “This issue is similar in regard to rheumatoid arthritis. It is only once you have engaged with the NHS systems for a period of time and had a chance to do some research, that you become aware of what services you should be entitled to receive”

The report offers the following suggestions from healthcare professionals of what is needed:

• A voice for the family – raising awareness of the impact JIA can have on the child, their school and family life and preventing feelings of isolation.
• Ensuring that wherever someone in the UK lives, they receive the same access to services and treatments.
• Ensuring that those with JIA and their families have access to a support network, either online or through engagement with others.