Barts and The London Cystic Fibrosis Centre for adults >> For patients
For patients
We know that coming into hospital, whether it’s for routine or more specialist treatment, can be daunting, but our team of highly trained staff are here to welcome, care and support you throughout your visit. Please read the information below to find out more.
Visiting us
Our cystic fibrosis outpatient clinics are run as multidisciplinary clinics. This means that at each cystic fibrosis clinic you will be met and assessed by the members of the cystic fibrosis team. This includes the cystic fibrosis nurse specialist, the dietitian, the physiotherapist and the cystic fibrosis doctor. On some visits you may also see the clinical psychologist at a time that is agreed with you.
A copy of the letter sent to your GP will also be sent to you to keep in a personal record folder. This will include details of your diagnoses, current medications, drug allergies, current weight and height and dietary changes recommended, lung function and physiotherapy techniques and recommendations, and the doctors’ assessment.
When you receive an outpatient appointment with us, you will be given a time for the appointment. Times are allocated according to sputum microbiology so it is important that you arrive at the correct time.
Once you have checked in with the clinic receptionist, you will see the outpatient nurse who will measure your your height and weight.
In a diabetes clinic, you will have your blood pressure checked, visual acuity measured (you may need your eyes dilated with eye drops), and a sample of urine tested. Your medical record will be handed to the cystic fibrosis team, who will each see you in turn. To minimise any delay in seeing all members of the team, you may see team members out of order. Each will have a copy of the notes the previous team member recorded to ensure continuity. Some anonymised data may be entered into the port cystic fibrosis database if you have consented to this.
If you have B.cepacia or a highly transmissible strain of Pseudomonas you will be seen separately from everyone else (either a separate clinic or completely separate clinic area).
In a cystic fibrosis diabetes, liver or arthritis clinic you will see the appropriate specialist (and nurse) as well as the cystic fibrosis team within the same clinic.
One clinic during the year (usually close to your birthday) will be an annual assessment clinic. This will follow the usual arrangement but in addition you may have a chest x-ray, a liver ultrasound, and a panel of blood tests (vitamins, blood count, kidney and liver function, diabetes check and allergy status).
Follow-up appointments are arranged with you before you leave the clinic.
Staying with us
If you need to be admitted to hospital, we will normally agree the admission date and time with you. Usually that date is within 24 hours of contacting us. If a bed is available, you will be admitted to the cystic fibrosis unit.
Some patients with cystic fibrosis cannot be admitted to the unit. They include anyone requiring non-invasive ventilation, with a chest drain, with severe breathing difficulties, with B.cepacia or highly transmissible strains of Pseudomonas (patients in the latter category can use the unit if ensuite facilities are available).
These rules are to ensure the safety of more unwell patients and to ensure no cross infection with more serious bacteria. If you cannot use the unit, you will normally be admitted to a single room in the main respiratory ward.
On admission, you will be seen by one of the ward nurses, who will admit you, aswell as members of the cystic fibrosis team. Together with the ward doctors and the cystic fibrosis consultant, they will determine a plan for your medical treatment which will be recorded on a cystic fibrosis specific admission booklet.
You can expect to have blood tests and 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 and the consultant do a ward round twice a week while the doctors in training will see you every day, Monday to Friday.
The ward round begins with a paper round in which all the up-to-date information on each patient is discussed, and x-rays and lung function results reviewed. The team then visit each inpatient in turn to discuss progress and decide on future management. The team is committed to being open and honest about patient’s health issues and encourages questions which are answered fully. All cystic fibrosis patients are actively encouraged to contribute to the decisions made about their care.
In between these ward rounds, patients will be reviewed by the doctors, the dietitian, the clinical psychologist, 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 a patients’ response to treatment or their illness. The patient would be informed that this would occur.
The date and time to leave the hospital is agreed between the patient and the cystic fibrosis team. Often patients can be discharged early to complete antibiotic therapy at home if they are capable of doing home IVs. Cystic fibrosis nurse specialists can arrange to teach these skills. The home IV team can deliver pre-prepared antibiotics, the fridge, and arrange for drug levels to be done weekly.
