Paediatric CF Physiotherapy Services

Our team covers both adults and children and comprises of a lead physiotherapist, Alice Day, Specialist Physiotherapists; Jayne Trott, Helen Speedy and Cory Dowdell, and an Exercise Therapist, Tom Kent. We also have a rotational physiotherapist working within the team.

Helen is based in NDDH and continues to provide our service within the North Devon CF team. Tom is a full time exercise therapist who completes the exercise tests and offers support with individual exercise programmes.

Physiotherapy is made up of a number of components and some aspects can start from the time of diagnosis. Other components can start at different times and will be reviewed regularly at clinic appointments depending on the child’s needs.

The main components of physiotherapy for CF are:

• Airway clearance treatment – including provision of equipment, education regarding cleaning, maintenance and infection control, ongoing assessment and modification of technique.
• Nebuliser therapy – at times nebulised antibiotics, mucolytics and mucoactives (solutions that help break up mucus) may be used by children with CF. It is essential that the timing of these nebulisers with airway clearance treatments is correct. The physiotherapist will work with you to ensure that the nebulised treatments are taken safely and in the best way possible. They can also help with establishing routines, sort out any issues with your equipment and replacing consumables as recommended. To help troubleshoot your nebuliser equipment at home, there are guides available in the physiotherapy resources section of this website.
• Exercise therapy – physical activity and exercise is essential for people with CF to help maintain healthy lungs and bones. It is therefore important that exercise is incorporated into the child’s daily routine from a young age. It can often help if the whole family show an interest in staying active, and keeps exercise as something that’s fun and sociable to do! Tom, our exercise therapist, is available to offer personal training advice in different settings. Please contact Tom on 07929764681 if you would like support for exercise. He also provides an exercise test annually which is advised for older children to complete as part of their annual review, in the form of either a bleep test or a CPET. Beam is an online platform endorsed by the CF trust that offers on demand exercise videos for people with CF available through https://beamfeelgood.com/.
• Musculoskeletal assessment and posture advice and education.
• Continence issues are common complaint in people with CF caused by repeated coughing causing pressure on the bladder. We an offer advice, education and treatment to help retrain the pelvic floor to help alleviate or control any leakage. The Squeezy app helps men and women with cystic fibrosis remember to do their pelvic floor exercises and to do them in the right way. The app is endorsed by the CF Trust. Please see here for further information.
• Developmental advice and education for infants and toddlers.

When a child is diagnosed by Newborn Screening

The child will initially be seen by a physiotherapist during the first visit to the Exeter CF centre.

The child will then be seen either in clinic or at home on a regular basis during the first few months of life, to continue the education process and provide support for the family to help incorporate a regular physiotherapy routine in the child’s daily life.

When a child comes to clinic

The child will be offered a review by a physiotherapist at clinic who will:

• ask about the child’s current physiotherapy regime
• review airway clearance techniques
• take a cough swab or a sputum sample
• provide ongoing exercise advice and encouragement

Things to remember when the child is coming to clinic:

• Please bring any airway clearance equipment to clinic so that technique and the equipment can be assessed.
• Always bring your child’s nebuliser equipment to annual review so that the equipment can be assessed.
• Around the time of your annual review an exercise test will also be performed – the child should always bring or wear appropriate footwear and clothing to undertake the exercise test.

Virtual Clinics

As a new service started during shielding as a result of the COVID-19 pandemic, many appointments are now being offered to be carried out over video link via the platform ‘Attend anywhere’. The URL for your video consultation  is https://nhs.vc/RDE-CysticF.

Things to prepare prior to your physiotherapy review:

• It is helpful to have any equipment to hand for review, such as your nebuliser, airway clearance equipment or spirometer.
• Please complete your lung function and oxygen saturations before your appointment. If there are any problems we can troubleshoot this when we speak to you.

Home visits

We routinely offer home visits to help support routine, to introduce new treatments and at annual review. We also offer visits to schools and nurseries if needed.

If a child is admitted to hospital

Throughout the duration of the admission the child will be seen by a physiotherapist to carry out:

• airway clearance treatment
• play activity/exercise sessions
• ongoing education and advice
• musculoskeletal assessment and treatment if required
• continence advice, education and treatment if required

Please bring all nebuliser, airway clearance and spirometry equipment with you for an admission.

Each child will be provided with the correct nebuliser or airway clearance device if needed, together with a set number of consumables each year. It is the families’ responsibility where possible to keep the equipment in good condition and free from damage.

Please see resources section for videos demonstrating how to assemble your nebuliser device.

Should you experience a problem with any of the devices please contact the physiotherapy team for advice on 07468718605 or rde-tr.exetercf@nhs.net and bring to your next appointment.

We have lots of resources to help you support your child’s physiotherapy. If you can’t see what you want in the resources please ask the team. If you would prefer to receive in booklet form please ask.

Contact us

• Pelvic floor exercises (female)
• Squeezy app
• How to improve your posture

Standards of Care and Good Clinical Practice for the Physiotherapy Management of Cystic Fibrosis