A Focus on Juvenile Idiopathic Arthritis
In the Spring 2014 we published a comprehensive report on the service provision of JIA in the UK.
The report was launched as the springboard for NRAS to begin to provide a service for children, adolescents and families who are living with JIA in July 2014.
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. The severity of arthritis can vary from mild to extremely disabling and symptoms include stiff, painful and swollen joints.
JIA is also 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 noted that JIA is not just a cause of physical pain but emotional and social as well. The impact of JIA is felt long before the opportunity of 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.
The report found that approximately 1,000 children and young people are diagnosed annually in the UK. However, 37% of diagnoses in the specialist centres we visited are delayed by either the General Practitioner (GP) or paediatrician and this delay has been known to be as long as TWO YEARS after first onset of symptoms.
The report identified various challenges facing the existing services and these 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
Ailsa Bosworth, Chief Executive of the National Rheumatoid Arthritis Society, who has lived with rheumatoid arthritis (RA) for over thirty years, said “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. This issue is similar in regard to RA. 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 each other
The report was the result of a year project which involved visits to specialist centres and district general hospitals across the UK, where all members of the JIA multidisciplinary team could be interviewed as well as parents of children with JIA and, where appropriate, the children themselves.