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.
In response to the COVID pandemic we have learnt from the experience and adapted the way we run our CF clinics. We now offer both Face to Face and Virtual appointments depending on clinical need and circumstance. Virtual appointments ( held by ‘MS Teams’ video link via EPIC – these have replaced ‘Attend anywhere’) have been welcomed by many of you allowing flexibility and avoiding the need to attend hospital so regularly when well. We currently aim for alternate virtual and face to face appointments but we will guide you depending on age, clinical need and ability to perform accurate home spirometry as there are particular benefits of face to face appointments in young children.
From the age of 14 years, young people with CF will be offered some of our Adolescent clinics held mostly on Wednesdays afternoons. 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 Transition 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.
Face to Face clinics:
Children with CF are at risk of cross-infection with bugs from other people with CF. Face to face clinics are therefore organised 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, you are allocated your own clinic room and then (apart from height and weight measurements) all other activities take place within that room. We encourage you to bring your own child’s toys and activities to appointments.Each room is cleaned before and after use to CF standards of care.
Virtual Clinics:
Virtual clinic appointments by ‘Attend anywhere’ video consultation have been introduced during the COVID pandemic with home monitoring and will continue to form part of your CF care between face to face appointments and we hope you find these a safe and convenient way to access your CF care. The link will be sent to you to access appointments. An appointment link will be sent to you before your appointment and we will join you virtually!
For all Face to Face and virtual clinics , please have your recent spirometry readings ( if appropriate) available ahead of the clinic ( see Tips below!)
Tips for a successful virtual appointment!
Please ensure you have any spirometry data , oxygen saturation data, any BM readings and recent height/ weight measurements available to maximise the effectiveness of your appointment.
Please send a cough swab/ sputum sample in a week before your appointment date so results are available for you – contact the team via email if you haven’t got any testing kits.
Think about where to take the Video call – have you got good wifi reception?, good lighting is helpful, ensure you will not be interrupted during important and sensitive discussion.
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 University Hospital (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. Call CF appointments directly on 01392 406493 or email the team . 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. In particular CFTR modulator therapies will be difficult to get hold of quickly so please bring with you to avoid unnecessary treatment breaks.
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.
Children requiring inpatient stay in North Devon will usually have a planned transfer to Exeter for ongoing inpatient care after stabilisation and discussion with the Exeter team.
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.
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
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