On 11 January 2022, the European Commission and MHRA approved Kaftrio for eligible children aged 6-11 in England, Scotland, Wales and Northern Ireland.
See CF trust update for more information. We will be in touch with those eligible to arrange all tests needed to prescribe and discuss with you what this means for you
The children’s cystic fibrosis team see children and young people with Cystic Fibrosis from diagnosis until it is time for them to complete transition to adult CF care leading up to their 18th birthday.
Weekly Paediatric MDT CF clinic are held on Monday mornings. These take place in the Paediatric Outpatient department, Royal Devon and Exeter Hospital, Wonford site, Level 1, Area J.
From the age of 14 years, young people with CF will be offered some of our Adolescent clinics held on Wednesdays (currently both morning and afternoon clinics held intermittently) and are an opportunity to start meeting some of the adult team. These take place in the adult outpatient area at the Wonford site, just to the left of the main entrance. As you near transition to adult services, you will be invited to attend 2 joint clinics here with members of your paediatric team and future adult team to ensure a smooth transition for you.
If there are specific infection control issues relevant to your child’s care, or if it is important to see you at other times then arrangements can be made for ad hoc slots to meet your needs
Please allow plenty of time for parking prior to your appointment.
During the COVID pandemic we have introduced video ‘ attend anywhere’ consultations with introduction of some home monitoring devices – this is likely to continue in some form for some clinics in the future and we hope you find these a convenient and safe way to access good CF care. Face to face appointments will still be crucial as part of ongoing care.
People with CF are at risk of cross-infection with bugs from other people with CF. Clinics are therefore organized to minimise the risk of this happening.
We allocate you a specific appointment time to help with this and aim to keep you separate from other patients. On arrival, children and families are allocated their own clinic room and then (apart from height and weight measurements) all other activities take place within that room.
Each room is cleaned before and after use. We encourage you/ your child to bring your own toys and activities to appointments.
If for any reason you (or we) are running late and rooms are not immediately available we may have to ask you to leave clinic and return after a short period to avoid meeting other patients.
During the COVID pandemic we have introduced video ‘ attend anywhere’ consultations and introduction of some home monitoring devices to support video consultations and to reduce aerosol generating COVID risk in face to face clinics – this is likely to continue in some form in the future and we hope you will find these a convenient and safe way to access CF care. Face to face appointments will still be crucial for good ongoing care.
For both Face to Face and ‘Attend anywhere’ clinics during the COVID period , please have your recent spirometry readings ( if appropriate) available for the clinic.
Tips for a successful virtual appointment!
Please ensure you have any spirometry data, oxygen saturation data, BM readings and recent weights/ heights available to maximise the ue of your appointment.
Consider sending a cough swab/ sputum sample in a week before your appointment date so results are available for you
Think about where to take the call – good lighting is helpful, good wifi reception, are you likely to be interrupted?
If you can’t access us we can problem solve by telephone and usually resolve this with you.
Each clinic is attended by at least one CF Doctor and members of the Multidisciplinary team.
You will meet:
The Royal Devon and Exeter is a teaching hospital so you may meet medical students and junior doctors during your visit to the CF clinic.
We ask that you keep a record of your future appointments with us, and let us know with as much notice as possible if you are unable to attend – at least 72 hours notice for routine appointments, and at least one week for an annual review. By cancelling your appointment ahead of time we will be able to offer the appointment to another person and ensure a smooth and efficient running of the service. Thank you for your help with this.
Children with cystic fibrosis may be admitted to hospital for a variety of reasons including:
For some this is a very rare occurrence and for others it may be a more regular event. One young person who needs more regular treatment sees it as a ‘Spa treatment for her lungs’! During your stay we encourage you/ your child to rest , sleep , eat and exercise , allowing us to support treatments when unwell and continue to educate you/ your child about all aspects of CF care during your stay.
If you/your child does need to come in, please bring all your medication, physio and nebuliser equipment with you, together with a small supply of any supplements taken and feed – this avoids any break in treatments if they are not immediately available from pharmacy. Any medication will need to be handed over to the nursing staff and will be kept in a locked cupboard.
Inpatient stays will be on Bramble ward (level 1, area H) in a dedicated side room with single use toileting facilities, usually en-suite. During the stay you will be seen by members of the CF team on a daily basis from Monday-Friday, with physio input available over the weekend.
All parents and children will be advised on relevant infection control measures during their stay on the ward. Infection control is really important in keeping you and others safe so we encourage you to stay within your room , use good hand washing techniques and avoid chatting at the nurses desks. You will be allocated specific times to make use of the school room and play facilities to avoid contact with other CF children.
Meals cards will be available during your admission.
A small fridge will be available in your room for storage of extra snacks.
Please be aware that our usual facilities are interrupted by the strict COVID regulations currently in place – we hope that usual services will restart as soon as possible to make your stay more comfortable.
Usual facilities include:
This is to make sure you are aware of how the ward is managed on day to day basis and how you can help with this.
Please click on the link to access our Code of Conduct. These documents make clear the professional standards you should expect from the CF Team and the conduct we expect from you and your child when your child is an inpatient
We know that the vast majority of patients and families already adhere to the statements in the Patient Code of Conduct but the documents available for everyone to avoid confusion. If you would like to discuss any related issues please do not hesitate to contact the CF team or Ward Matron.
All children with CF undergo a series of screening/monitoring investigations every year which are then discussed in a more detailed appointment called the Annual Review. At this appointment we assess progress over the previous year, screen for complications and conclude how things are currently. Treatment and any further investigation plans are then put together for the forthcoming year.
Leading up to your annual review we will request the following:
The annual review appointment itself will be a longer appointment than usual so please allow extra time. We would encourage both parents and any additional family members involved in care to attend if able.
At this appointment all the results are discussed and a clear plan of management for the following year is made. Children and families will of course have the opportunity to ask questions and raise any concerns and is often an important time for increasing young peoples understanding of their illness with maturity.
The review results, discussions and plan of care will be summarised in a letter and sent to you soon after the appointment. Health details are added anonymously and with your consent, to the national CF registry database ,as part of the national audit of CF centre care