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Haemophilia

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You might have heard your team talk about transition and wondered what it is. These pages have been designed to help provide information and support as you become more independent and take more responsibility for managing your haemophilia.

We will start talking to you about this when you are about 13 years old but the time the move to the adult haemophilia team happens will usually be when you are 16-19 years old. As everyone is individual and will be ready at different times, the team will work with you to help you feel ready for this and to think about when and how the move can be best planned. The move to the adult team can feel daunting but the adult services aim is the same as ours. To care and support you throughout your time in hospital. They are just in a different setting and work in slightly different ways. 

Who can help you with this? 

You might already know a lot about your condition. At the start of the transition process your haemophilia team will ask you about what you know about your condition and how to manage it and give you further information and support to ensure you are ready.

Your parents may have been important in helping you manage your haemophilia. It is good to talk together about how you can manage your health and independence. You can help in this process by starting to ask more questions during your clinic appointments, keeping important numbers in your phone and contacting the team yourself outside of clinic appointments. 

During transition your haemophilia team will help you prepare for adult services by: 

  • Ensuring you have the knowledge and skills to manage your condition
  • Seeing you for part/all of your clinic appointment on your own
  • Introducing you to the adult haemophilia team
  • Making sure you know when to get help and who to contact in an emergency
  • Helping you understand the impact of haemophilia on your life as you get older

Will the adult service be different?

Your haemophilia team will describe to you ways in which the adult clinic will differ from those you are used to and you will have an opportunity to meet members of the team before you transfer to adult services. The main difference is that you will be more independent in managing your haemophilia and making decisions for yourself. You will be given all of the information to help you make the right choice for you and you can be guided and supported by your parents and friends. 

Throughout the day your parents and carers are able to visit you. If you are admitted to an adult hospital it would be unusual for your parents to stay with you overnight, however if you are worried about this then don't hesitate to talk to your haemophilia team. They are there to help you and would want to hear your concerns. 

The following pages contain information to help you manage your haemophilia and know about the care we can provide for you. 

To visit our general transition homepage click here