The aims of the Cystic Fibrosis (CF) Physiotherapy team at Great Ormond Street Hospital (GOSH) are to assess and treat children with CF, to support families to carry out and assist in carrying out physiotherapy for children of all ages.
What is a CF specialist physiotherapist?
A CF specialist physiotherapist is a physiotherapist who has gained particular expertise in the area of CF and has been involved in the care of CF for a number of years.
The GOSH CF physiotherapy team consists of three specialist physiotherapists (covering inpatient, outpatient clinics and outreach physiotherapy visits) who have in-depth knowledge, experience and understanding of children with CF. There is also a full-time CF physiotherapy assistant working in the team, mainly on Badger Ward. The CF physiotherapy assistant deals with any equipment (airway clearance and nebuliser queries).
The CF physiotherapists are also part of the wider GOSH Physiotherapy department as well as members of the CF Multidisciplinary team.
What does physiotherapy for CF mean?
Physiotherapy for CF is made up of a number of different aspects of treatment, all of which will be introduced at the appropriate times and will continually be reviewed whenever the child with CF is reviewed.
Physiotherapy is an integral part of the treatment for CF and starts as soon as the diagnosis is confirmed.
The main components of physiotherapy for CF are:
Airway clearance treatment – including provision of equipment, education regarding cleaning and infection control, ongoing assessment and modification of technique.
Nebuliser therapy – at times nebulised 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 Physiotherapy team will ensure that these are timed correctly.
- Exercise therapy – physical activity and exercise is essential for CF. An exercise test will be undertaken by all children with CF on an annual basis. The type of test undertaken by the children may change as the child grows older. It is essential that exercise is incorporated into the child’s daily routine. Specific exercise advice for each child will be provided by the Physiotherapy team and will be individualised for each child.
- Musculoskeletal assessment and posture advice and education.
- Continence advice, education and treatment.
- Developmental advice and education for infants and toddlers.
What service do we provide?
When a child is diagnosed by newborn screening
The child will initially be seen by a physiotherapist during the first visit to GOSH for the CF education day.
The child will then be seen at home on a regular basis during the first year of life at home, during outreach physiotherapy visits and at both GOSH (and network centre clinics if appropriate), to continue the education process and provide support for the family to help incorporate a regular physiotherapy routine in the child’s daily life.
The child will continue to be reviewed routinely by the Physiotherapy team at clinics and as needed.
When a child comes to clinic at GOSH
The child will always be reviewed by a physiotherapist at clinic who will:
ask about the child’s current physiotherapy regimen
review airway clearance techniques
take a cough swab or a sputum sample
provide ongoing exercise advice and encouragement
Always bring 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.
At the annual review clinic visit an exercise test will also be performed – the child should always bring or wear appropriate footwear and clothing to undertake the exercise test.
When a child is admitted to GOSH
Throughout the duration of the admission the child will be seen two to three times per day by a physiotherapist to carry out:
airway clearance treatment
ongoing education and advice
musculoskeletal assessment and treatment if required
continence advice, education and treatment if required
When a child goes to a clinic at a shared care centre
The child will be reviewed by the network care physiotherapist for most visits, but the GOSH Specialist team will visit and carry out the clinic with the network care team at least twice a year.
When a child is seen by the outreach physiotherapist
The child can be reviewed at home, at school or at nursery to:
assess airway clearance techniques
assess nebuliser therapy
assess exercise regimes, provide exercise advice and exercise prescription
facilitate involvement in local gyms, sporting clubs and activities
Provide support to and liaise with local hospital physiotherapists, community teams, school teachers (PE teachers in particular) and school nurses where necessary.
How can I ask the CF Physiotherapy team for help?
A member of the CF Physiotherapy team will always be present at GOSH CF clinics and during an inpatient admission at GOSH.
If you need to contact the Physiotherapy team outside of these times you can contact the team:
Telephone the CF office on 020 7762 6714 (our CF secretary will take a message and we will return your call)
Exercise and the GOSH CF/Nuffield Healthcare collaboration
Exercise is a key component of the care of CF. Regular physical activity is known to improve cardiorespiratory fitness, muscle strength, joint mobility, bone health and general wellbeing. In addition to these benefits, regular physical activity in CF also helps airway clearance. Improved physical fitness has been shown to have a positive effect on maintaining or even increasing lung function and may even improve long term outcome.
The GOSH Physiotherapy team have built a strong relationship with Nuffield Health, the UK’s largest healthcare charity which has fitness and wellbeing centres throughout the UK, staffed by fitness teams. Nuffield is now offering all children with CF who are under the care of GOSH free off-peak access to their gyms.
All referrals for use of a Nuffield facility must be made formally through the Physiotherapy team at GOSH. You cannot arrive at one of the gyms on your first visit without the arrangement having been set up between GOSH and the Nuffield team. This is to ensure that Nuffield is able to offer the training and support needed for each individual child or adolescent with CF.
If you would like more information and are interested in taking up this offer please contact the Physiotherapy team.
Research and teaching
The CF Physiotherapy team carries out research in order to assess and improve the service we provide. You and your child may be asked to help with research but you do not have to do so.
GOSH is also a teaching hospital. You and your child may be asked if you mind physiotherapists who are in training to be present during assessment or treatment sessions. They may also take part in caring for your child, under the direct supervision of a trained member of staff.
If you are not happy with this, please speak to the department or ward manager. This will not affect your child’s care in any way.