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Cystic Fibrosis Trust

Threat to CF care commissioning

Trust fights decision to diminish voice of CF community in face of NHS England's proposals.

NHS England yesterday announced that it will push through plans to disband its specialist cystic fibrosis advisory body, with its work carried out by a wider specialised respiratory group instead.

The Cystic Fibrosis Trust is deeply disappointed with both the decision to abolish the Cystic Fibrosis Clinical Reference Group (CRG) and the manner in which it was taken, and after a short consultation period the engagement outcome report has failed to adequately address any of the Trust’s serious concerns, laid out in our original response.  

This comprehensive response to NHS England explained that the proposed changes will undermine the needs and interests of people with cystic fibrosis by marginalising their voices and those of the professional clinical teams responsible for their care. The Trust believes that NHS England have failed to describe how the new arrangements will maintain or improve the quality of CF specialist advice that NHS plans are guided by.

Ed Owen, Chief Executive of the Cystic Fibrosis Trust, has today requested an urgent meeting with Dr Jonathan Fielden, NHS England's Director of Specialised Commissioning, to discuss the outstanding and fundamental concerns that the proposals continue to raise.

David Turner, a Patient Voice Representative on the CF CRG since its formation in 2012, said: “I know how much the CRG has done to improve the care of people with cystic fibrosis over the past four years. It is extremely frustrating to know that the breadth and quality of CF specialist advice immediately available to the NHS will be diminished by these proposals. 

“This is made worse by the wholesale lack of transparency as to NHS England's motivation for formulating its proposals in the first place, and for dismissing the strong and reasoned objections of consultees. I am very concerned that, over time, these proposals will prove detrimental to the quality of care which should be provided to all cystic fibrosis patients."

The Trust will continue to keep the cystic fibrosis community up to date on this important issue.