For parents, carers and patients
For parents, carers and patients
We know that coming into hospital, whether it is for routine or more specialist treatment, can be daunting, but our team of highly trained staff are here to welcome, care and support you and your child throughout your visit.
Visiting us
When your child has an outpatient appointment it is important to turn up at the correct time. We have allocated specific times to ensure that patients do not mix with each other, thus preventing cross infection and also to ensure that the clinic flows smoothly. Once you have checked in with the clinic receptionist, your child will have their height and weight checked by the clinic nurse and be allocated a room.
Your child’s medical notes will be handed to the cystic fibrosis team members who will each see your child in turn. To minimise delay in seeing all members of the team there is no set order and some team members i.e. nurse and dietitian may see you and your child together. The multi-disciplinary team meet after each clinic to ensure that any areas of concern or changes are discussed with all the cystic fibrosis team.
discuss everyone to ensure everyone knows everything discussed in clinic and to ensure continuity. Data is also entered into the Port Cystic Fibrosis database when appropriate.
If your child has Burkholderia cepacia or a highly transmissible strain of Pseudomonas aeruginosa they will be seen separately from everyone else on a different day.
Follow-up appointments are arranged with you before you and your child leave the clinic and after two years of age, the majority of patients see the CF team every two months.
Staying with us
If your child needs to be admitted to hospital we will agree the admission date and time with you. Usually admission is planned within 24 hours of contacting the children’s cystic fibrosis team. When a bed is available, your child will generally be admitted to Barclay Ward on the fourth floor at The Royal London Hospital.
Some patients with cystic fibrosis cannot be admitted to Barclay Ward. This includes anyone who has with Burkholderia cepacia or a highly transmissible strain of Pseudomonas aeruginosa. These rules are to ensure the safety of all patients and to ensure no cross infection with more serious bacteria. If this applies to your child they will be admitted to a different children’s ward within the hospital.
On admission your child will be seen by one of the ward nurses as well as members of the cystic fibrosis team. Together with the ward doctors and the cystic fibrosis consultant or registrar, they will determine a plan for your child’s medical treatment which will be recorded on a cystic fibrosis specific admission plan. Your child can expect to have blood tests and sometimes a chest x-ray on admission; further tests will be decided by the senior doctors on the ward and the cystic fibrosis consultant.
The cystic fibrosis team do a daily ward round and all the up-to-date information on each patient is discussed, and x-rays and lung function results reviewed. The team then visit each patient in turn to discuss progress and decide on future management during the admission. The team is committed to being open and honest about your child’s health issues and encourages questions which are answered fully. You are actively encouraged to contribute to the decisions made about your child’s care.
In addition to these ward rounds; your child will be reviewed by the dietitian, the cystic fibrosis nurse specialists and the physiotherapists as part of their management and to address any problems that may come up. All information is treated confidentially but may be passed on to other members of the team if it is felt to impact on your child’s response to treatment or their illness. If this happens, you will be informed.
You will be involved in the discussions about when your child can leave hospital – this will be agreed between you and the cystic fibrosis team. Often your child may be discharged early to complete antibiotic therapy at home if you are eligible for home intravenous therapy. The ward nurses in conjunction with the cystic fibrosis nurse specialists arrange to teach and assess these skills during an admission. The home IV provider can deliver pre-prepared antibiotics, the fridge, and the CF nurses arrange for drug levels to be done weekly.
