This Transform Clinical Reference Group (CRG) deals with patients that have breathing difficulties. Respiratory disease services are usually provided by respiratory physicians in local hospitals. However, some diseases are very rare while other more common ones can lead to complex problems.

Scope

This clinical reference group covers:

• services for people with severe and difficult-to-control asthma
• services for people with interstitial lung disease
• services for people requiring management of complex respiratory disease who will need complex assisted ventilation at home
• services for people with pulmonary hypertension, including complex surgery
• services for people with cystic fibrosis.

Membership

• Chair: Dr Jonathan Fuld, National Clinical Director for Respiratory Disease, NHS England
• Kathy Blacker, Lead Commissioner Helen Potter, Commissioning Pharmacist
• Fiona Simmons-Jones, Public Health lead
• Prof Andrew Jones, Clinical Member
• Dr Hitasha Rupani, Clinical Member
• Prof David Kiely, Clinical Member
• Dr Mike Davies, Clinical Member
• Dr Jay Suntharalingham, Clinical Member
• Dr Lisa Spencer, Clinical Member
• Dr Susan Madge, Clinical Member
• Dr Amanda Bevan, Pharmacist Lead
• Ravijyot Saggu, Pharmacist Lead
• Dr Neil Hamilton, Pharmacist Lead
• Clare Corbett, Patient and Public Voice representative
• Vacant, Patient and Public Voice representative
• Bradley Price Patient and Public Voice representative
  

  Affiliates

• Iain Wheatley, Association of Respiratory Nurses
• Dr Robina Coker, British Thoracic Society
• Holly Van Ristell, Association of Chartered Physiotherapists in Respiratory Care
• Dr Martin Allen, Getting It Right First Time Respiratory Lead

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:

• Adult primary ciliary dyskinesia
• Ataxia telangiectasia service (Adult)
• Chronic pulmonary aspergillosis service (adults)
• Cystic fibrosis (adult)
• Cystic fibrosis (children)
• Interstitial lung disease service (adult)
• Lung transplantation service (adult)
• Lymphangioleiomyomatosis service (adults)
• Pulmonary hypertension centres (adult)
• Pulmonary hypertension shared care (adult)
• Pulmonary thromboendarterectomy (adults and adolescents)
• Respiratory complex home ventilation (adult)
• Specialised respiratory services – severe asthma(adult)

Policies

A commissioning policy is a document that defines access to a service for a particular group of patients. A NICE Technology Appraisal Guideline on the same topic will replace, or be incorporated into, a commissioning policy as appropriate. These are important documents that are developed to ensure consistency in access to treatments nationwide.

The following policies fall within the scope of this CRG:

Commissioned:

• Balloon pulmonary angioplasty for chronic thromboembolic pulmonary hypertension (all ages)
• Extracorporeal membrane oxygenation (ECMO) as abridge to lung transplant (all ages)
• Inhaled therapy for adults and children with cystic fibrosis
• Levofloxacin nebuliser solution for chronic pseudomonas lung infection in cystic fibrosis (adults)
• Lung volume reduction by surgery or endobronchial valve for severe emphysema in adults
• Nebulised liposomal amikacin for the treatment of non-tuberculous mycobacterial pulmonary disease caused by mycobacterium avium complex refractory to current treatment options (adults and post pubescent children)
• Riociguat for pulmonary arterial hypertension
• Selexipag for treating pulmonary arterial hypertension (adults) – effective from 1 April 2019
• Targeted therapies for pulmonary hypertension functional class II
• Targeted therapies for use in pulmonary hypertension in adults

Not routinely commissioned:

• Continuous aztreonam lysine for cystic fibrosis (all ages)
• Dornase alfa inhaled therapy for primary ciliary dyskinesia (all ages)
• Infliximab for progressive pulmonary sarcoidosis in adults
• Rituximab for connective tissue disease associated with interstitial lung disease

Position statements:

• Commissioning statement: Ivacaftor, tezacaftor/ivacaftor, lumacaftor/ivacaftor and elexacaftor/tezacaftor/ivacaftor for cystic fibrosis

Get involved

If you are interested in the work of the internal medicine NPOC or its CRGs, you can register as a stakeholder.  For details on our latest consultations please visit NHS England » Consultations

Get in contact

For any questions or queries relating to the work of the internal medicine NPOC or any or its CRGs, please contact: england.npoc-internalmedicine@nhs.net