The disease is also associated with other complications, such as blindness, which results from uncontrolled inflammation around the lens of the eye (known as uveitis) and can also significantly delay physical development in the very young, cause permanent joint damage and deformity and delay puberty.
Owing to the numbers affected, JIA and other paediatric rheumatology services fall squarely within the domain of specialised commissioning. According to many observers the old system - involving ten regional Specialised Commissioning Groups, a National Specialised Commissioning Team and the Advisory Group for National Specialised Services - led to too much local variation in service provision.
In the absence of detailed national strategy, Specialised Commissioning Groups were accused of striking different local agreements with Primary Care Trusts, which caused inconsistent implementation of the 34 Specialised Services National Definition Sets that described service expectations for particular disease areas – including Definition no. 26 on Specialised Rheumatology Services, which covered JIA.
Just as new specialised commissioning arrangements were introduced, NRAS started to conduct its own research and confirmed significant variations in access to existing JIA services. Of the 13 specialist centres and 16 District General Hospitals NRAS visited, around 37% of patients diagnosed at these centres were delayed by the GP or Paediatrician for between 6 months to 2 years after first presenting with symptoms.
Furthermore, we found that many centres struggled in spite of providing a committed service and that the majority of units lacked full teams, with many units struggling to fill positions. We also found that many families were not near a specialist centre and had to commute large distances to receive treatment and that many specialist centres did not have outreach clinics.
In the context of these challenges any change to the system is to be welcomed. In the case of JIA, things started off reasonably well. A new Clinical Reference Group was established by NHS England to provide expert clinical advice about specialised services for Paediatric Medicine and in addition, a patient representative with JIA was also appointed to the CRG, thus ensuring a strong patient perspective.
A few months later and the CRG had developed a comprehensive service specification for Paediatric Medicine: Rheumatology, which would greatly enhance the overall treatment of JIA. The vision included important statements such as a commitment to ensure optimal age-appropriate care and transition into adult services and the provision of suitable multi-disciplinary expertise to support patients.
However, fast forward to the present and there appears to be a genuine possibility that this good, early work could be derailed. There has been a steady stream of headlines casting doubt over the state of specialised services. In December last year, it was revealed that NHS England had agreed more than 1,000 temporary contract variations (known as derogations), where providers of specialised services had failed to meet new service standards. Then came the news in April that NHS England was forecast to overspend on specialised services by at least £450m in 2013-14. Three months ago, NHS England established a turnaround team to get a grip on the spiralling budget. Meanwhile, the new NHS England Chief Executive, Simon Stevens, last month appeared to distance himself from NHS England’s previous publicly stated ambition to concentrate specialised services in 15-30 centres of excellence.
Of all these announcements, the one to pique our interest is the issue of specialised service derogations. Understandably, we want to know which providers are struggling to meet the service specifications. However, this is not just so we can scrutinise the plans being put forward to enable them to eventually meet the service specifications, but also to identify which ones we can be offering support to.
In May this year, Health Minister Jane Ellison MP, let slip in an answer to a parliamentary question that NHS England had not yet determined a publication date for its report on specialised service derogations, although it was expected to be “after the pre-election period for the forthcoming local authority and European Parliamentary elections is completed on 22 May 2014”.
Well, it is now July and there is still no sign of the report. We hope politicians will take note and continue to press the Government and NHS England for its swift publication. Only then will we really know how far specialised services have come for people with JIA and the extent of the challenges ahead.
A Focus on Juvenile Idiopathic Arthritis : A survey of services for children, young people and families living with JIA in the UK is available to download from the National Rheumatoid Arthritis Society website
here.
Jamie Hewitt is Head of Government Affairs at the National Rheumatoid Arthritis Society