Quality Improvement

person with CF and nurse

Quality Improvement

Find out how Cystic Fibrosis Trust’s Quality Improvement Team is working to improve quality of care in CF centres across the UK

Read our latest reports

What is Quality Improvement (QI)?patient and nurse

Quality improvement is about trying to make the health care you receive more:

  • Safe  trying to ensure the care you receive makes you better, not worse
  • Timely – ensuring you receive the care and information you need, when you need it
  • Effective – ensuring the treatments and advice you’re receiving are evidence-based and work
  • Efficient – helping your centre understand and use their resources to ensure optimal care
  • People-centred – ensuring your opinions on your care are listened to and acted upon
  • Equitable – reducing unnecessary differences in how care is provided across the UK

What does the Trust’s Quality Improvement team do?

The QI team has been working hard since 2018 to help CF centres across the UK to explore and improve the quality of care they provide.  

The team work directly with CF centres to support the collection and analysis of patient experience and staffing data. Participating centres then receive bespoke data summaries from the team, detailing their local findings. These summaries allow services to explore existing good practice and to identify areas for targeted quality improvement. 

The QI team also produce UK-wide reports from this information, which we send to services and publish on our website.  

In addition, we support services to share about QI projects and experiences, so they can get feedback from peers and learn from each other.

  • Our Patient Experience surveys

    Our patient-reported experience measure surveys (PREMs) give CF centres insights into what people with CF and their families think about the health care they receive.

    Repeating the PREMs surveys will track how experiences of people with CF change over time and will help CF teams measure the impact of their quality improvement efforts. 

    You can find out more about the data collection arrangements for these surveys here

    We thank all CF centres who support our PREMs surveys, and all people with CF and family members who shared their experiences. We welcome questions and feedback about PREMs reports at [email protected]  

  • Paediatric services survey

    We collect data on patient experiences in paediatric services every 3 years. The first survey in children’s services took place in 2019/20. The second survey took place in 2022/23 with 28 of 32 paediatric CF centres contributing and over 800 survey responses collected.

    Download our 2019/20 PREMs report for paediatric services

    Download our 2022/23 PREMs report for paediatric services

  • Adult services survey

    We collect data on patient experiences in adult services every 3 years. The first survey in adult services took place between 1 December 2020 and 31 March 2021, and 26 of 28 adult CF centres took part.

    Download our PREMs report for adult services

  • Our staffing tool

    This online tool, completed by centres themselves, gives us a yearly snapshot of staffing resources available in participating UK CF centres. Centres receive a tailored report showing how their staffing and vacancy levels compare to UK averages. 

    The QI team also publish summaries of the UK-wide findings from the staffing tool, which allow us to explore how staffing levels change over time. 

    Download the 2021-2023 Staffing Report

    Download the 2020-22 Staffing Report

    Download the 2019-21 Staffing Report

    Download the first Staffing Report – 2019 only

    We thank all CF centres that submit information to our staffing tool, and we welcome questions and feedback about staffing reports at [email protected].

    We know many CF services try to find solutions to reduce the impact of staffing and other challenges. We invite services to share their innovations and experiences in the form of case studies, so that they might help and inspire others. 

    Become an Innovation Case Study

  • QI Share & Learn

    The Trust’s QI team appreciate that improvement work often happens at local levels and we want to create opportunities for learning to be shared.

    We host free lunchtime webinars, bringing together CF professionals and other stakeholders to share their experiences of innovation in CF care, explore challenges, and learn from each other.

    Find out more and sign up for future QI Share & Learn events

    Upcoming events
    • March 2024: QI Share & Learn on CFTR modulators: nutrition, weight management and body image

    We also gather case studies of QI projects in CF services.

    Summaries of previous events
  • Quality Improvement (QI) working group

    Our QI working group is made up of people with CF, their families, CF professionals and members of the Trust.

    The group has co-produced the Trust’s QI strategy and is helping to develop key projects to improve CF care and services.

    Take a look at our meeting notes: 

    If you are a person with CF, a family member, or a CF health professional and think you might be interested in becoming a member of our QI working group, please complete our Expression of Interest Form

  • New model of care for CF

    NHS England are developing a new model of care, which they hope will enable people with CF to receive specialist care and treatment while minimising disruption to their daily lives. This project aims to produce new guidance for regional teams to help them join up care for CF patients between primary, community, secondary and specialist care providers. 

    NHS England will gather feedback and insight from patients, carers and clinicians to inform and revise the pathway and models of care to best serve the changing needs of CF patients as they move through paediatric care and into adult services. You can find out more by emailing them at [email protected]

    This review of CF services in England comes at a time of significant change for our community following the introduction of new modulator treatments and the impact of the COVID-19 pandemic. It’s vital that proposals are informed by the insights and experiences of the CF community and sound evidence including from the UK CF Registry. We expect NHSEI to update on the next steps towards the summer of 2022. 

    We’ll continue to advocate for better investment and smarter innovation across the NHS, so that everyone in our community can receive the best possible care. 

UK CF Registry

The Registry is an anonymised database of people with CF in the UK - a powerful tool for monitoring and auditing the care that people receive.

Resources for professionals

Explore the resources, programmes and awards that we offer to CF professionals to help them provide the best support they possible can to people with cystic fibrosis.


Contact our wonderful helpline team by telephone or email, Monday to Friday, for answers to your questions.

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