Written evidence submitted by The Cystic Fibrosis Trust (ICS0048)

The Cystic Fibrosis Trust is the only UK-wide charity dedicated to uniting for a life unlimited by cystic fibrosis for everyone affected by the condition. Cystic fibrosis (CF) is a life-limiting condition that makes it difficult to breathe, causes vulnerability to infection and restricts your ability to fulfil your ambitions. For those living with cystic fibrosis, medication, physiotherapy and general health all must be considered when planning the simplest activity and being unwell frequently interferes with work and education. Our work includes several projects to help us achieve our vision of a Life Unlimited for people with cystic fibrosis - such as more innovative and impactful research programmes that accelerate breakthrough science and therapeutics; greater support to clinical teams in the NHS and improvements in the way care is delivered; and better information, support and advice that enables even more people with cystic fibrosis to make the right choices for them at all stages of their lives.             

This submission is intended to supplement the submission the Trust has made as part of the Specialised Healthcare Alliance (SHCA) and is intended to draw attention to a few Cystic Fibrosis specific points.

Our first concern is how the disparate situations people with CF are in from each other will be managed under the Integrated Care Systems. Around 10% of the CF population are unable to benefit from modulator therapy treatment, and therefore require different treatment arrangements and levels of care to the rest of the CF population. At the moment this can be managed under the current model of Specialised commissioning with a national outlook, but we would like to see some clarity on how, under Integrated Care Systems, the treatment of small populations within the cohort of patients under the ICS, that require completely different care, will be assessed and managed.

Secondly, we would like to know how the Delegated Commissioning Group that will oversee delegated specialist services and agree national minimum standards will be appointed. Will it include patient groups and external stakeholders in patient care and advocacy, or will it just by NHSE officials and clinicians?

Finally, as in the submission made by the SHCA, we are keen to see clarity on how ICSs will be made accountable for adherence to service specifications, and what the mechanisms will be for the raising and rectifying of issues should services be unable to adhere to the standards set in service specifications. Similarly, we would want to see that these mechanisms are transparent and robust, with clear outcomes should the quality and safety of care slip below set thresholds.

Aug 2022