Location
As a young person transition will start while you are in children's services. This may be in Bristol Royal Hospital for Children or somewhere more local to where you live. When you transfer to adult service, this usually happens when you are between 16 and 18 years old, you will be seen at the Bristol Adult Cystic Fibrosis Centre at the Bristol Royal Infirmary in the centre of Bristol. This is next door to Bristol Royal Hospital for Children. The majority of appointments are held in the respiratory clinic (known as A221) which is shared with some other services.
The children's and adult teams meet regularly to talk about young people coming to clinics, we discuss treatments, medication, your plans for future education or employment and any concerns that you have. The children's Cystic Fibrosis team also put together a detailed summary of all your medical information which is passed on to the adult team when you transfer.
Not every young person seen in the Cystic Fibrosis service at Bristol Royal Hospital for Children will transfer to the Bristol Adult service. This usually happens when choices for university or work are not local. You can talk to the team about this and the same information and links can be made with another service more local to where you are going.
You may also be transferring from another children's service to the Bristol Adult service. Your team will be in contact with the Bristol adult team and a similar process will happen.
Clinic appointments
Clinics will run in a very similar way to your clinic appointments with your paediatric team. You will be seen in one room and the full multi-disciplinary team (this will include the doctors, physios, dieticians and Cystic Fibrosis nurses) will come to you. You will have all the usual tests including lung function. Once a year we will complete your annual review, however we will make this part of one of your clinic appointments. We will make sure we explain this to you and you will have the opportunity to ask questions.
When you see the doctor they will talk to you about how you feel, review your lung function, weight, microbiology and any other tests and then make a treatment plan with you. You can also ask any questions you might have for them.
There are likely to be some small differences between your paediatric team and the adult team. However there are many similarities and both teams will support you as you change. One difference is that the adult team will direct questions at you; we understand that your parents/carers may still be involved in actively supporting you in managing your condition and appointments but you will be able to decide how much you want them to be involved. You will also find letters are sent to you as opposed to your parents/carers. Over time we find that young adults become more confident and independent. We can support you in this alongside your parents/carers.
You might find that, like many other young people with Cystic Fibrosis, that you feel well and don't think that you need to attend clinics. However it is really important for you to attend to allow the team to continue to monitor your condition and spot subtle differences that may mean that you need new treatments or changes to current ones.