How often you visit your haemophilia centre or comprehensive care centre will depend on your age and the severity of your bleeding disorder. There are guidelines that tell you how often you or your loved one should see someone and you can discuss this with your haemophilia centre. But no matter how often you visit, make sure you get the most out of every appointment.
- Be prepared! Whether you put good old-fashioned pen to paper or tap the keys on your smartphone, make a note of the thoughts, queries and issues that pop into your head in daily life so you don’t forget what they were by the time your next appointment comes around.
- Think holistically about your family’s needs. If you’re accompanying your child or another family member to an appointment, don’t forget that your centre can give you the support you may need yourself. For example, mums who are haemophilia carriers may experience prolonged bleeding, especially during their periods. Do mention this to your doctor or nurse: they should offer care and support to help you to cope better with any symptoms related to low levels of a clotting factor.
- Increasingly, people with bleeding disorders are seen by specialists outside haemophilia for other health conditions, such as for hepatitis care or diabetes management. Your haemophilia centre may not have the most up-to-date information about you from these specialists, so if you have copies of letters they have written take them with you to your appointment. Remember that haemophilia specialists are specialists in bleeding: you are the specialist about you – and you are not just about bleeding!
- Remember that if you are on prophylaxis your centre will probably want to measure your pre-infusion factor levels to make sure you are on the correct dose. Check with your centre how long they would like you to be without factor for before your appointment (usually 48-72 hours). Of course if you have a bleed you should treat it.
Try to get to your appointment on time, but be prepared to wait if the clinic is overrunning or dealing with an emergency. You might have to wait between seeing different members of the team – between seeing the physiotherapist and the doctor for example. Bring something with you to read or do; some centres provide ipads/computers/games for children. There are always noticeboards and the latest information from The Haemophilia Society – if you can’t see these ask where they are!