cfna

Reflections as CFNA Chair

Tue, 14 Apr 2026 21:41:47 GMT

As I handover the role of Chair of the CFNA knowing what a fantastic leader Sally Basford will be I reflect on my time as chair with pride and joy. After Sally asked me to come back to the committee in a non-comital role post COVID I somehow found myself in the chair position shortly after. I completely blame Sally for this, so it is only right she is now chair!

It’s been an amazing three and half years kicked off with the rebrand and development of the website thanks to Amperative (calling in help from Sally’s brother Tim for IT know how).

My time as chair has seen the Kaftrio, then Alyftrek NICE technology appraisals; development of the NHS England GIRFT Toolkit; 3 ECFS abstracts/posters (one coming soon); contribution to CF Trust documents; the annual study day x 3; the introduction of the supervision programme, and, the one with the biggest sense of achievement, the standards for the nursing management of cystic fibrosis. All of which has been possible thanks to the dedication and hard work of the committee members.

During my time in the role the opportunity to be involved in national work and the personal development that came alongside this enabled me to further my career and successfully transition to CF Nurse Consultant. For this I will be forever grateful.

But the committee isn’t just about the work, it’s about so much more. It’s about the people, the support and the friendships. I have gained more from this lovely group of humans than they will ever realise, and I will miss being part of that team.

As I step away, I look forward to some time to dedicate to other projects. Many of you know I love the heparin topic and I am pleased to announce my systematic review was (FINALLY) published ( A Comparison of the Effectiveness of Using Heparinised Saline versus 0.9% Sodium Chloride to Prevent Central Venous Catheter Occlusion in People with a Totally Implantable Venous Access Device (TIVAD’s): A Systematic Review ). You may also hear more from me about the flu vaccine project, as well as improving communication with primary care providers.

I would like to once again take this opportunity to thank the committee for all they have done, and continue to do, but also to thank each and every one of you! The CFNA is a unique and amazing group to be a part of, full of passionate, caring and supportive people. I look forward to seeing it continue to grow and develop with Sally and team at the helm!

Caroline

Registration is NOW OPEN for the CFNA Annual Study Day 2026

Sat, 04 Apr 2026 16:49:33 GMT

Join us for a day of learning and networking at the Nowgen Centre, Manchester

This in-person event is a fantastic opportunity to connect with fellow CFNA members, exchange ideas, and enhance your knowledge.

Reduced registration fee of £50 for CFNA members. Registration fee for non-members is £65.

For full details including the agenda please follow the registration link below.

SAVE THE DATE CFNA Annual National Study Day 2026

Thu, 26 Feb 2026 11:58:36 GMT

Nowgen Centre

Nowgen Building, 29 Grafton Street, Manchester, M13 9WU

1st of October 2026

Merry Christmas from the CFNA Committee 2025

Tue, 23 Dec 2025 16:00:24 GMT

Wishing all our CFNA members a very Merry Christmas and a Happy New Year!

Flying the CFNA flag at ECFS 2025!

Tue, 01 Jul 2025 12:21:26 GMT

It was fantastic to see so many fellow CF nurses at ECFS in Milan. There was a great variety of posters by CF nurses including our very own CFNA poster designed and produced with Alison Taylor, The Cystic Fibrosis Trust.

Congratulations again to Lindsay Houilhan, Cystic Fibrosis Clinical Nurse Specialist,

Great Ormand Street (picture below), who won our ECFS registration draw.

Registration is NOW OPEN for the CFNA Annual Study Day 2025

Fri, 20 Jun 2025 11:45:26 GMT

Join us for a day of learning and networking at the RAF Club, London

This in-person event is a fantastic opportunity to connect with fellow CFNA members, exchange ideas, and enhance your knowledge.

Reduced registration fee of £50 for CFNA members. Registration fee for non-members is £65.

For full details including the agenda please follow the registration link below.

Standards for the nursing management of cystic fibrosis, 2nd Edition ARE LIVE!

Sat, 15 Mar 2025 11:55:43 GMT

Years in the making.....the standards are now LIVE!

Cystic fibrosis nurse specialists provide care for people with cystic fibrosis throughout their lives as part of the CF multidisciplinary team. Nursing is a partnership between people with CF, their families/carers, and nurses. The role of the CF CNS includes advocacy, clinical management, education, support and advice, and research.

The CF CNSs are my first point of contact. I feel I can discuss anything with them about my CF care. The CF CNS is a crucial conduit to all the other healthcare professionals at a hospital/clinic. The CF CNSs are key to maintaining my health; I am grateful for the care of the CF CNS, keeping me as well as possible.

– Peter, who has CF

Why are the new guidelines important?

The original guidelines were published over 20 years ago. Not only have medical advancements since then led to changes in treatment, but nursing care itself has also evolved to focus on promoting person-centred care. The new guidelines reflect these changes and assist CF specialist nurses (and CF teams) in navigating the multiple, complex challenges of CF care. They also recognise the evolving role of the CF specialist nurse and offer guidance and support for advanced nursing roles.

Who wrote the new guidelines?

A working group comprising both paediatric and adult CF nursing professionals from the UK and Ireland (Cystic Fibrosis Nursing Association, CFNA) conducted a comprehensive appraisal of the 2001 guidelines and created a revised document. The group wanted to ensure the voices of people with CF were heard throughout the document. Using methods of co-production, they sought feedback from the CF community about the role of the CF specialist nurse, and this feedback is included throughout the document. The draft guidelines were circulated to expert clinicians and patient/parent representatives from Cystic Fibrosis Trust’s Clinical Advisory Group (CAG) and were developed with support from Cystic Fibrosis Trust.

What’s in the guidelines?

The new guidelines reflect modern advancements in treatment and the role of the CF specialist nurse in CF care. New sections include:

infection prevention and control
advanced practice, including non-medical prescribing
transplant
adherence/concordance
non-invasive ventilation
family planning, pregnancy, perimenopause, and menopause
lifestyle
research
safeguarding
shared care.

The guidelines reinforce how the CF specialist nurse is pivotal to the care experience of people with CF and aim to support them in delivering the highest standard of care throughout the lives of people with CF.

SAVE THE DATE CFNA Annual National Study Day 2025

Thu, 09 Jan 2025 16:55:36 GMT

Royal Air Force Club, London

23rd of October 2025

CF MDT Conference

Thu, 09 Jan 2025 16:51:56 GMT

Cystic Fibrosis Trust are bringing back their free one-day conference for CF multidisciplinary team members and others involved in CF care and treatment. The event on 20 March 2025 at the Birmingham Conference and Events Centre will focus on the future of CF care, bringing together professionals working in CF for a mix of plenary and panel sessions, as well as engaging, clinically-led workshops.

Find out more and register at www.cysticfibrosis.org.uk/about-us/conferences-and-meetings/MDT-2025

Merry Christmas from the CFNA Committee

Sat, 21 Dec 2024 22:12:40 GMT

Wishing all our CFNA members a very Merry Christmas and a Happy New Year!

Yasmin wins a CF Trust 60th Anniversay Award

Sat, 21 Dec 2024 22:06:38 GMT

Congratulations to CFNA member Cystic Fibrosis Nurse, South Warwickshire University NHS Foundation Trust who WON the Outstanding CF Paediatric Care Award.

Yasmin said 'I love my job as I get to work with amazing children and parents. I also work with a really supportive and encouraging team. So this award is for them too.'

Alongside Yasmin, Mark Butler and Jacqueline Francis were also nominated for their amazing work. It is fantastic to see CFNA members flying the flag for nurses and being recognised for the care they provide.

You can watch the awards and read more here- Meet the finalists in our 60th Anniversary Awards

The National Nursing Consensus Gudlines are out to consultation with the CAG!

Tue, 22 Oct 2024 10:58:59 GMT

Years in the making.....

After, what feels like a lifetime, we are very excited to announce that the National Nursing Guidelines are now out to consultation with the Clinical Advisory group (CAG). This collection of CF professionals will appraise the document and make comments and suggestions for our review.

We hope the final document will be ready for release in January 2025! 24 years after the current document!!!!

RightCare Cystic Fibrosis Toolkit Published by NHS England

Thu, 29 Aug 2024 08:12:02 GMT

The RightCare cystic fibrosis toolkit has now been published on the NHS England website. It was a privilege to work on this toolkit with my fellow professional group chairs, CF Consultants and community representatives. As below, it does not cover all aspects of CF care/service, as this is vast (as we well know), it does however focus on key areas where inconsistencies in service provision have been identified.

You can access the toolkit below.

This RightCare toolkit will help support systems to understand key priorities and ways of optimising cystic fibrosis care, by providing key actions for improvement.

It presents several priority areas across the cystic fibrosis pathway that highlight new and emerging areas of care, and where we know there is unwarranted variation that would benefit from further review and improvement.

The toolkit includes a self-assessment questionnaire which provides a method for assessment and benchmarking of current services.

Standards for the clinical care of children and adults with cystic fibrosis in the UK

Thu, 29 Aug 2024 07:56:37 GMT

The third edition of the Standards for the clinical care of children and adults with cystic fibrosis in the UK have been published on the CF Trust website and are available to download, use, and share.

Registration is NOW OPEN for the CFNA Annual National Study Day 2024

Fri, 26 Jul 2024 14:13:06 GMT

Central Church, Bristol

19th September 2024

Join us for a day of learning and networking at Central Church. This in-person event is a fantastic opportunity to connect with fellow CFNA members, exchange ideas, and enhance your knowledge.

Reduced registration fee of £45 for CFNA members. Registration fee for non-members is £60.

09:00-09:30 Registration (stand and poster viewing)

09:30-09:45 CFNA AGM & Chair Feedback, Caroline Whitton, CFNA Chair

09:45-10:15 Fertility and family formation in men with CF

Dr Stephen Bourke, Newcastle Upon Tyne Hospital Foundation Trust

10:15-10:30 Male fertility journey, Robert Hall, Person with CF

10:30-11:00 Neurodiversity

Lucy Fleetwood, Trainee ACP, Learning Disabilities Team, University Hospitals Plymouth

11:00-11:15 Neurodiversity- patient perspective, Robert Hall, Person with CF

11:15-11:45 Tea/Coffee break (stand and poster viewing)

11:45-12:45 Case Presentations (5 min presentation, 10 min discussion)

Lauren Bartlett and Rachael Trevitt, New Cross Hospital

Nicola Emsley, West Hertfordshire NHS Trust

Elizabeth Hill, Leeds General Infirmary

Abi Owen, University Hospitals Plymouth NHS Trust

12:45-12:50 Best case presentation vote

12:50-13:30 Lunch provided (stand and poster viewing)

13:30-14:00 Quality Improvement. Improving patient experience and staff efficiency at CF Out-patient clinics.

Damian O’Neill, CF Nurse Consultant, Belfast

14:00-14:15 ECFS Raffle Winner Poster presentation, Justine Coatman, Kings College Hospital (remotely)

14:20-14:50 Workshop A or B

14:50-15:10 Tea/Coffee (stand and poster viewing)

15:10-15:40 Skills lab 1, 2 or 3

15:45-16:15 Skills lab 1, 2 or 3

16:15-16:30 Case Presentation Prize & Evaluation and close

Workshop A: Non Medical Prescribing
Workshop B: The history and ever evolving role of the CF nurse

Skills lab 1:Chest & Abdo examination
Skills lab 2:CxR interpretation
Skills lab 3: Interpreting blood results

We will be joined by the CF Trust who will showcase information resources available to CF professionals and people with CF!

If you had a poster at ECFS please bring this along to share in our poster area.

We are currently awaiting quotes from local hotels who can offer reduced accommodation rates for the 18th and will forward details to registrants once available (opt in option at checkout).

Flying the CFNA flag at ECFS

c.whitton@nhs.net (Caroline Whitton) — Mon, 01 Jul 2024 15:14:58 GMT

It was fantastic to see so many fellow CF nurses at ECFS in Glasgow. There was a great variety of posters by CF nurses including our very own CFNA poster, highlighting the results of our members survey!

Congratulations again to Justine Coatman, Paediatric Cystic Fibrosis Clinical Nurse Specialist,

Kings College Hospital (picture below), who won our ECFS registration draw. A really interesting piece of work we look forward to hearing about at our CFNA study day!

Photography student's work features on CFNA website

Mon, 01 Jul 2024 15:14:58 GMT

When the University Hospitals Plymouth CF Team were approached with the request for a photography student to join clinic and capture life with CF as part of her project we jumped at the chance.

Jasmine joined Abi (CF Nurse) and Dr David Waine (CF consultant) in clinic seeing Zara (utterly amazing person with CF and children's book author Amazon.co.uk: Zara Teare: books, biography, latest update ). Jasmine snapped away whilst the consultation took place and then a few weeks later she sent us her work.

During this time Sally (Vice chair) and I had been looking for images for the new website, a harder task than you might think as we were keen they represented us as nurses and what we do! When Jas's photos came through I knew we had found what we were looking for, a photo that captured the nurse-person with CF relationship, whilst showcasing a procedure synonymous with CF nursing care!

Hiya! I’m Jasmine Clist, and I’m a second year commercial photography student studying at the Arts University of Plymouth.

At the beginning of this project, I developed a passion for documentary photography and exploring more into the condition of Cystic Fibrosis.

My eldest sister was diagnosed with CF just after she was born. Me and my sister’s childhood usually revolved around me and my family helping her with her medications, getting her to her checkups on time, exercising and physiotherapy. But as we grew older, we too understood independence, and she began to navigate her daily life with this condition.

Me and my sister are young adults now, and after being given this project, I felt a sense of connection between her life with CF, and the use of documentary photography. I not only wanted to explore her point of view, but I gained contact with another memorable person with CF, Zara, from Derriford Hospital, to better understand her perspective on how the condition works for her!

I hope you enjoy the pictures I have taken, and how these women and the team helped me create such important images!

Thank you!”

We certainly did enjoy the images and Jasmine's photo now features on the main page of our website- such an amazing achievement for someone at the start of their carer, and something for her to be very proud of!

Happy nurses working on the CF Trust Nursing Guidelines!

Mon, 01 Jul 2024 15:14:57 GMT

Happy nurses from the CFNA committee working on the CF Trust national nursing guidelines! We are very proud of the new format which encompasses the voice of people with CF and celebrates the role of the nurse! We can't wait to share them with you!

SAVE THE DATE- CFNA Annual National Study Day 2024

Fri, 08 Mar 2024 10:47:26 GMT

Central Church, Bristol

19th September 2024

The CFNA's annual national study day provides an exceptional opportunity for CF nurses to refine their expertise and exchange knowledge with colleagues. CFNA members can secure their place at the discounted rate of £45 through the members' portal, while non-members are welcome to attend for £60.

cfna

Reflections as CFNA Chair

Registration is NOW OPEN for the CFNA Annual Study Day 2026

Join us for a day of learning and networking at the Nowgen Centre, Manchester

*SAVE THE DATE* CFNA Annual National Study Day 2026

Nowgen Centre

Nowgen Building, 29 Grafton Street, Manchester, M13 9WU

﻿ 1st of October 2026

Merry Christmas from the CFNA Committee 2025

Flying the CFNA flag at ECFS 2025!

Registration is NOW OPEN for the CFNA Annual Study Day 2025

Join us for a day of learning and networking at the RAF Club, London

Standards for the nursing management of cystic fibrosis, 2nd Edition ARE LIVE!

Years in the making.....the standards are now LIVE!

Why are the new guidelines important?

Who wrote the new guidelines?

What’s in the guidelines?

*SAVE THE DATE* CFNA Annual National Study Day 2025

Royal Air Force Club, London

23rd of October 2025

CF MDT Conference

Merry Christmas from the CFNA Committee

Yasmin wins a CF Trust 60th Anniversay Award

The National Nursing Consensus Gudlines are out to consultation with the CAG!

Years in the making.....

RightCare Cystic Fibrosis Toolkit Published by NHS England

Standards for the clinical care of children and adults with cystic fibrosis in the UK

Registration is NOW OPEN for the CFNA Annual National Study Day 2024

Central Church, Bristol

19th September 2024

Flying the CFNA flag at ECFS

Photography student's work features on CFNA website

Happy nurses working on the CF Trust Nursing Guidelines!

SAVE THE DATE- CFNA Annual National Study Day 2024

Central Church, Bristol

19th September 2024

SAVE THE DATE CFNA Annual National Study Day 2026

1st of October 2026

SAVE THE DATE CFNA Annual National Study Day 2025