Oxford Adult Cystic Fibrosis Centre - new patients
For patients transitioning from Children's Services or another Cystic Fibrosis centre.
We aim to offer new patients a face to face initial appointment at Oxford Adult Cystic Fibrosis Centre (OACFC). Subsequent clinics will be a mix of virtual and face to face depending on your needs.
At your first appointment you will see a Consultant, as well as a specialist Dietitian, Nurse and Physiotherapist, so we can find out what is important to you about your care. You may also be able to meet our Psychologist if you wish.
This appointment may last a little longer than you are used to, compared to a routine clinic you have attended before.
We will give you full contact information for our team at your first appointment.
Your appointment
Please allow yourself time to get to the John Radcliffe Hospital, especially if you are unfamiliar with our hospital site.
We will allocate an individual room for your appointment, but this may not be available immediately so please avoid being too early. If you think you may be late, please contact us - if you are more than 20 minutes late you may not be able to see the whole team at your appointment.
What you can expect
- Friendly, highly-experienced clinical team
- Confidential space to discuss concerns about your physical or mental health
- Easy access to non-judgemental support and advice
- Help to make informed decisions about your treatment
We will work with you to get the most out of your day-to-day treatments, to help you live the life you want.
To get the best out of our service
- Contact us if you feel unwell or are concerned about a new symptom
- Respond promptly to email or phone contact from the team
- Attend your regular appointments on time and let us know in advance if you can't make it
- Discuss with us what's going well, or not so well, with your treatment
- Complete any home monitoring (e.g. lung function) we advise you to do
Equipment
At your first appointment we will offer you a lung function device (nuvoair) to allow you to share spirometry measurements from home. We will also ask you what existing equipment you use at home (e.g. nebulisers, airway clearance devices, Freestyle libre sensors, insulin pens etc.) and ensure what you have is in good working order and meets your current needs.
It is useful to bring smaller pieces of equipment with you, especially if you have any queries or concerns.
Port-a-cath
If you have a port-a-cath (a small medical device that sits under the skin to easily deliver medication into the body) we will make a plan with you at your first appointment for your regular flushes.
This may be arranged with our CF nurses as part of your clinic review, at a separate outpatient appointment, or we may be able to refer to services more local to you.
Unfortunately, our nurses are not normally able to offer port-a-cath flushes at home.
Medication deliveries
We will arrange for any medication deliveries you usually receive to be registered with our centre to ensure there is no interruption in your supply.
CF registry
We will ask for your consent to have your clinical data entered in the national CF registry under our care. This is important for us to monitor our service and receive funding to care for you.
The data collected are also used to help CF researchers improve care.
Links
Support for patients prescribed nebulised therapy
A digital hub for people with cystic fibrosis and clinicians - CFHealthHub
Moving to adult care
Your transition - Cystic Fibrosis Trust
Youth Rights in Health Care - NHS England (pdf)
Last reviewed:23 October 2023