Transition

Around 16 to 18 years of age, patients who have been under the care of children's services must move on to the adult service.

As a child your care has been provided with a child/family centred approach - your parents or guardians have overseen your care. As you become an adult, your needs will change.

Making independent life choices is important, and the responsibility for managing your haemophilia shifts on to you as an individual. You should have been prepared for this process by being actively involved in decisions about your care during adolescence.

Ready Steady Go

We use a programme called 'Ready Steady Go, Hello' to help young people and their teams through the transition process.

As part of the process, you will have a keyworker (usually the Transition Lead) from the Paediatric Haemostasis Unit who can help smooth over the transition period.

Once people are old enough to transition to adult services they are expected to be in charge of their own care. However, this does not work for everyone, and your paediatric team will let the adult team know if this is the case so we can adjust the process for you and your family.

You will always have the support of your haemophilia nurses and doctors at the hospital. Your team will be able to help you with any queries you may have about your diagnosis and how this will affect your future.

First appointment

If your symptoms have been mild and well managed, you will probably have had yearly telephone reviews and your parent or guardian may have undertaken theses consultations on your behalf.

However, your first appointment in adult services will be face to face, so you can meet the staff involved in your care and familiarise yourself with Oxford Haemophilia and Thrombosis Centre (OHTC) in case you need to attend for treatment or emergency review.

Follow-up

After this initial appointment, if you have a moderate or severe bleeding disorder it is likely that you will have a review every six months, and over the telephone every 12 months.

If you have a milder disorder you may ben on a Patient Initiated Follow-up (PIFU) pathway.

If you are a carrier for a disorder, and do not have problems with bleeding, we may only see you when you want to make contact, for example for prenatal counselling or if you are pregnant.

You are still a patient of the Paediatric Haemostasis Unit until you have had your first appointment with your new adult haematologist. Before this appointment, if you have a problem or query you should direct it to them.

Missed appointments

If you do not attend your transition appointments more than two times, and are under 18, we will need to let our safeguarding teams know, so they can ensure you are safe. We will not discharge you.

If you do not attend transition appointments and are over 18, we will transfer your care to the adult service. We will send you three appointments to see us at the adult service. If you do not attend after this time, we will discharge you, and if you need to be seen, your GP will have to refer you again, which could lead to delays.

We will still be available in case of an emergency.