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Cystic Fibrosis Trust

Quality Improvement

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

Please note: Due to the COVID-19 pandemic and recognising that efforts of clinical teams are focussed on providing front-line care, all Quality Improvement projects are temporarily on-hold. Please email with any queries and we will be happy to help.

What is Quality Improvement (QI)?

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 – do you receive the care and information you need, when you need it?

Effective – are the treatments and advice you’re receiving evidence-based? Do they 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 was established in 2018 to provide resources that help to support CF centres across the UK to improve the quality of the care they provide.

Current projects

Patient Reported Experience Measures (PREMs) Survey

Our UK-wide patient experience survey will give participating CF centres insights into what their patients and families think about the health care they receive. Results of the survey will be compared to the UK average for each question, to allow centres to benchmark their performance. This will help CF teams identify potential areas for change. Running the PREMs survey every three years will track how patients’ feelings about their care change over time and help CF teams measure if their QI projects have had a positive impact.

Staffing tool

This online tool, completed by the centres, aims to give a yearly snapshot of staffing resources in participating UK CF centres. Centre-level and UK reports will be available in March 2020 and will show centres how their staffing and vacancy levels compare to UK averages. We are happy to say that 75% of centres have participated and we would like to thank them for their contribution.

How can you get involved?

Quality Improvement Working Group

Join our new Quality Improvement working group, made up of people with CF, their families, CF professionals and members of the Trust, and help to form our QI strategy and develop key projects that improve CF care and services.

We want everyone in the CF community to have an equal say in which care issues we focus on and how we support CF centres.

What will I have to do?

The group will meet online at least four times a year using collaborative platforms to share documents and ideas. We will use something called ‘co-design’, meaning that everybody involved has an equal level of power within the process. People with CF and their carers’ lived experience can provide insight, wisdom and ideas. Combining their knowledge with the on-the-ground pragmatism of clinicians and the Trust’s Quality Improvement team ensures that the changes taking place are patient-centred and helps support modern healthcare teams with an emphasis on better care and health outcomes.

Co-design has been used with great success by other healthcare charities, such as Mind, Diabetes UK, the Cystic Fibrosis Foundation in the USA, and the Trust’s Clinical Trials Accelerator Platform.

You’ll receive training, and no prior experience is necessary, just a fiery determination to make CF care the best it can be!

Sign up today

Complete the application and equal opportunities form and send it to by 5pm on Friday 27 March to express your interest. Please feel free to contact us with any questions you have. We look forward to working with you.

Patient Reported Experience Measures update

The Patient Reported Experience Measures (PREMs) survey, supporting patients and parents to tell us how they feel about the care they receive in their CF centre, has been up and running for 6 months. 25 paediatric centres are participating and we are thrilled to say that we have nearly 600 surveys returned so far. We would like to thank the participating centres, parents and patients for their continued support in this project. With 6 months to go until the close of this project, we would encourage you to have ‘your say’ if you haven’t already. You can check if your paediatric CF centre is participating here.

Adults with cystic fibrosis will have the opportunity to complete the survey in 2020.

Complete the paediatric survey

If your centre is on the participation list, complete the paediatric survey either in paper format at your clinic, or via the online version of the questionnaire below. Remember to only complete the below surveys if you or your child receives their care at a paediatric CF centre. Choose the link that corresponds to the correct age version for your child. Please read the Patient Reported Experience Measures (PREMs) survey data handling information before completing the survey.

0-12 years

13+ years

Participating centres

  • Addenbrookes Hospital, Cambridge
  • Alder Hey NHS Children’s Hospital, Liverpool
  • Birmingham Children's Hospital
  • Bristol Royal Hospital for Children
  • Crosshouse Hospital, Ayr
  • Derriford Hospital, Devon
  • Great North Children's Hospital, Royal Victoria Infirmary, Newcastle Upon Tyne
  • Hull and East Yorkshire Teaching Hospital
  • James Cook University Hospital, Middlesbrough
  • John Radcliffe Hospital, Oxford
  • Leicester Royal Infirmary
  • Noah's Ark Children's Hospital for Wales
  • Norfolk and Norwich University Hospital (Jenny Lind Children's Hospital)
  • North West Midlands CF Centre, Royal Stoke University Hospital
  • Nottingham Children's Hospital (Queen's Medical Centre)
  • Royal Brompton Hospital, London
  • Royal Cornwall Hospital
  • Royal Devon and Exeter Hospital
  • Royal Hospital for Children, Glasgow
  • Royal Hospital for Sick Children, Edinburgh
  • Royal London Children’s Hospital
  • Royal Manchester Children's Hospital
  • Sheffield Children's Hospital
  • Southampton Children's Hospital
  • University Hospital Wishaw, Lanarkshire

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.