This is a Respond and Advise Clinical Reference Group (CRG)

Specialised paediatric rheumatology services provide specialist care for children and young people with rheumatic disease. This includes inflammatory and non-inflammatory conditions such as inflammatory arthritis (IA), juvenile systemic lupus erythematosus (JSLE), juvenile dermatomyositis (JDM), vasculitis as well as pain syndromes, unexplained fevers, complex multisystem disease, uveitis and medically unexplained physical symptoms with rheumatological manifestations and associations.

Scope

This clinical reference group covers:

• services for children and young people with inflammatory and non-inflammatory rheumatic disease
• services for children and young people with pain syndromes, unexplained fevers, complex multisystem disease, uveitis and medically unexplained physical symptoms with rheumatological manifestations and associations
• services for children and young people with complex childhood osteogenesis imperfecta, juvenile idiopathic osteoporosis, metabolic bone disease and auto- inflammatory conditions

Membership

• Kate Armon, Clinical Lead for Specialised Paediatric Rheumatology

Products

A key part of the CRG’s work is the delivery of the ‘products’ of commissioning. These are the tools used by the 10 Hub Commissioning Teams to contract services on an annual basis.

Service specifications

Service specifications are important in clearly defining the standards of care expected from organisations funded by NHS England to provide specialised care. The specifications have been developed by specialised clinicians, commissioners, expert patients and public health representatives to describe both core and developmental service standards. Core standards are those that all funded providers should be able to demonstrate, with developmental standards being those which may require further changes in practice over time to provide excellence in the field.

The following service specifications fall within the scope of this CRG:

• Paediatric medicine: Rheumatology
• Complex childhood osteogenesis imperfecta service

Policies

Commissioned

• Anakinra for haemophagocytic lymphohistiocytosis for adults and children in all ages

Policy statements

The following policy statements fall within the scope of this CRG:

• Biologic Therapies for the treatment of Juvenile Idiopathic Arthritis (JIA)
• Appendix A E03/P/d Juvenile Idiopathic Arthritis (JIA)

Get involved

If you are interested in the work of the specialised paediatric rheumatology CRG or its NPOC, you can register as a stakeholder.

For details on our latest consultations please visit the NHS England consultation hub.

Get in contact

For any questions or queries relating to the work of the specialised paediatric rheumatology CRG or its NPOC, please contact: england.npoc-womenandchildren@nhs.net