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

Common paediatric respiratory conditions are managed in local hospitals or primary care settings, but complex and rare conditions are managed in conjunction with a specialised paediatric respiratory centre.  Support via outreach is often needed for children with complex respiratory disorders, typically those requiring respiratory support from a portable ventilator and those with artificial airways.

Scope

This clinical reference group covers:

• Services for children and young people with rare respiratory conditions or Specified common conditions with complex needs
• Services for children requiring home respiratory support
• Services for children, young people and adults with suspected or confirmed primary ciliary dyskinesia

Membership

• Simon Langton-Hewer, Clinical Lead for Specialised Paediatric Respiratory

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:

• Diagnostic service for primary dyskinesia (adults and children)
• Primary ciliary dyskinesia management service (children)
• Primary ciliary dyskinesia management service (adults)
• Paediatric medicine: Respiratory

Policies

Not routinely commissioned

• Dornase alfa inhaled therapy for primary ciliary dyskinesia (all ages)
• Temperature controlled laminar airflow device for persistent allergic asthma

Get involved

If you are interested in the work of the specialised paediatric respiratory 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 respiratory CRG or its NPOC, please contact: england.npoc-womenandchildren@nhs.net