How we are influencing cystic fibrosis service design and delivery as the NHS implements Integrated Care Systems

Our responses to both inquiries intended to raise our asks and concerns in the upcoming transition for specialised services into Integrated Care Systems.

Our first ask was to improve the clarity of how certain procedures and arrangements attached to the transition will happen. This included setting out a clear timeline for the updating of services specifications, mechanisms for compliance with safety and national standards, and delivery of detailed governance and accountability arrangements. We are keen to make sure that accountability and adherence procedures under ICSs are easily understood, as are the mechanisms for raising and rectifying issues should services not be able to adhere to the standards set in service specifications.

With regard to CF services specifically, we have put forward our concerns about how CF patients who are in different health situations to each other will be cared for under the ICS. For instance, we know that around 10% of the CF population aren’t able to benefit from modulator therapy treatment and will need different treatment arrangements. This is managed under the current model of specialised commissioning with a national outlook, but we need to understand how, under Integrated Care Systems, the treatment of small populations that require completely different care within the cohort of patients will be assessed and managed.

Our final ask was to seek clarity on how the Delegated Commissioning Group that will oversee delegated specialist services and agree national minimum standards will be appointed, as this has not yet been set out.

CF services are yet to be designated “ready for greater ICS leadership” by NHSE. The Trust will continue to influence the plans for this integration when it comes to ensure the best outcomes for our community.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.