The CF Trust back the Frontline First campaign

Cystic Fibrosis (CF) is a complex disease which affects the whole body, particularly the lungs and digestive system. Those with CF are cared for by a specialist team.

The CF Nurse Specialists are the glue that holds the CF service together. Without them, it would fall apart. Apart from their identified CF responsibility in outpatient clinics, attending to inpatients, training the ward nurses in CF, and supporting families coping with IVs at home, they fill innumerable gaps. They are the familiar, constant and reassuring presence for families or adults with CF.

They are the person the mum will ring when coping with her three children - two of whom have CF – and she just can’t manage any more and there is no social worker or psychologist attached to the CF team. As one mother told us recently, “I poured it all out to her. When I put the phone down I realised I had been on for an hour and I felt bad because I know how busy she is.”

They are the person who visits the child’s school when there are difficulties, such as essential drugs being locked away in a medical room, far away from the child’s classroom and the dining room and inaccessible when the child needs them, or when the school is being difficult about why the child’s lunchbox contains a packet of crisps and a chocolate bar. Extra fat and calories are essential for children with CF to maintain anything like a normal weight.

He or she is the person who will sit down with the tearful and confused mother of a newly diagnosed baby and give her the time she needs to know she will be able to cope. All this set against a backdrop of years of experience and a huge level of expertise in all aspects of Cystic Fibrosis.

These specialist nurses cannot be hijacked for general ward duties or other tasks without leaving the CF service and its vulnerable patients at risk. Their exceptional experience in managing the care of those with CF is invaluable and their time for this vital work must not be eroded.

The CF Trust is delighted to be able to support the Frontline First campaign.