"The one-size fits all approach to CF does not work” – CF professionals’ views on CF care

We have seen a lot of change in CF in recent years. Modulator therapies have improved the lives of many, but not all, with CF. New technologies have transformed how care is delivered. The way funding flows to many CF teams has changed and models of care are under review.

We know there have been reductions in the number of inpatient admissions and IV days. Our UK CF Registry shows a drop in the proportion of people with CF receiving at least one course of IV antibiotics from 45% in 2019 to just 20% in 2024¹². But at the same time, CF diabetes rates have stayed around the same, and certain complications appear to have increased. Additionally, we hear from people working in CF that there are new challenges and that many of them feel as busy as ever.

To better understand how things are changing for those delivering CF care, we worked together with CF professionals to develop a survey, which ran in early 2025. More than 150 professionals from CF centres and clinics across the UK shared their experiences, as well as their ideas and priorities for the future.

What’s changed?

Our data suggests that there has been a shift rather than an overall reduction in CF workload. CF professionals in the survey said that there were fewer admissions and exacerbations to deal with now, but many were spending more time delivering outpatient, remote, or community care. 

Survey respondents also reported that people’s needs are diversifying, and complexity is increasing. Some people with CF continue to require traditional, respiratory-focused CF care, and access to inpatient facilities. But for many others, care is no longer mainly focused on managing respiratory symptoms. Increasingly, CF teams are dealing with a wider range of health issues linked to CF, including gastrointestinal and musculoskeletal problems, and CF diabetes. Additionally, professionals in our survey said that they are seeing an increase in mental health and social support needs within the CF community.

Workload is evolving differently

There are similarities in how paediatric and adult CF care is evolving, including reductions in inpatient workload, and increasing mental health and social support needs. There are also shared challenges, for example around staffing and medicine shortages. But there are several important differences in how CF care and workload is changing in each setting. 

More people are living longer with CF than ever before and the population in adult care is growing. Survey respondents also highlighted that new needs are arising. For example, more people with CF need support with fertility, pregnancy, menopause, or conditions of ageing. Complexity of care was also felt to be increasing, with professionals in adult CF care seeing more people with comorbidities and multiple long-term conditions.

In paediatric settings, patient numbers are relatively stable, with many children experiencing significant improvements in health and suffering fewer exacerbations. Families still require advice and support, especially in the period following the initial CF diagnosis, but for many children the focus of care is shifting to prevention, reducing treatment burden, keeping children well, and enabling as normal a life as possible.

Finally, while many paediatric services have returned to face-to-face work, most adult services continue to use hybrid models. In our survey, many CF professionals from adult settings felt that virtual and remote options were beneficial but had added significantly to their workload. It is vital that CF teams are given the time and resources they need to adapt their services to meet the changing needs and preferences of people with CF.

In the future, it will also be important to monitor how CF care continues to evolve in both settings to ensure that everyone with CF can continue to access the care they need when they need it.

Hopes for the future of care

Despite all the change highlighted in our survey, CF professionals remained optimistic about the future of CF care, as well as their teams’ ability to adapt. Their top priority for the future was equitable access to treatment and support for everyone with CF. Many felt that modulator therapies and resulting improvements in health outcomes was exciting and positive progress. But professionals also highlighted the need to continue looking after those who cannot currently benefit, to expand access, and to research new therapies.

Our survey respondents wanted to continue working within CF multidisciplinary teams and emphasised the benefits of this approach to enable holistic care. They proposed upskilling existing staff and enhancing collaboration with other providers to meet new and emerging challenges. 

CF professionals were keen to deliver person-centred care that adapts around the needs of each individual and reduces burden as much as possible. They recommended more flexible approaches and suggested empowering people with CF and their families to be active partners in their care and to contribute to service redesign.

What’s next?

Our workforce survey reveals a field adapting rapidly to transformative therapies and technological advances. Together with CF professionals, Cystic Fibrosis Trust has already updated the Standards of Care for CF³⁴, as well as several clinical guidelines.⁵⁶

We will continue to review and update our resources and support offer as care and treatments evolve and as new evidence comes to light. We also remain committed to advocating for the conditions that CF professionals need to deliver high quality and equitable care to ensure everyone can access the care they need when they need it. We won’t stop until everyone can live without the limits of CF.

Read about the full survey findings