Fighting for improved care and support for people with JIA and their families
Juvenile Idiopathic Arthritis (JIA) is a leading cause of physical disability in young people. Although there are pockets of excellence within the field of paediatric rheumatology, there is still too much of a postcode lottery when it comes to being able to obtain convenient, high-quality care and access to medicines.
Healthcare systems for JIA are configured very differently around the UK, but face a number of similar challenges. These include the need to improve data collection to accurately record the numbers of people with JIA affected, enhance access to JIA services for local populations, recruit more paediatric rheumatology specialists and enable broader access to expertise within multi-disciplinary teams, and introduce better transition arrangements for young people to adult rheumatology services.
In some cases these challenges are being compounded by changes to the healthcare system. For example, the NHS in England has turned over responsibility for commissioning these services to seven NHS England local area teams and created a network of clinical reference groups to advise on priorities. Trying to raise the priority of paediatric rheumatology services against this back drop of widespread change is therefore extremely demanding.
What we are fighting for
We want to end the postcode lottery of care for people with JIA. This means:
- Implementation of British Society for Paediatric and Adolescent Rheumatology (BSPAR) standards throughout the UK
- Improved epidemiological data and hospital coding for JIA patients
- More information for JIA patients about available medicines and criteria to access them
What we are doing
- Tabling parliamentary questions and discussing JIA with politicians and officials
- Publishing research about the availability of JIA services in the UK
- Ensuring that lay representatives with JIA are represented on policymaking forums
- Responding to consultations, including NHS England’s paediatric rheumatology service specification
How you can help
- Tell us about your experiences of JIA services or accessing medicines -firstname.lastname@example.org