Who will be involved in care of those living with haemophilia?
It is important people with haemophilia register at their nearest haemophilia centre, as this will be a source of advice and support. The teams at these centres vary, but will most likely include doctors, nurses and physiotherapists and may include psychologists and social workers. If your nearest centre is one of the smaller haemophilia centres you will also be registered at a larger regional centre called a Comprehensive Care Centre (CCC).14
You will most likely find that you have the greatest contact with haemophilia nurses, who frequently support patients outside away from hospitals, through phone calls and home visits. Nurses can support patients with tailored treatment plans, adjusted to the individual’s lifestyle. Inside hospitals, nurses are key in making sure that other hospital staff caring for patients are given basic haemophilia knowledge to ensure their safety.15
Haemophilia centres will also have access to a physiotherapist, or a dedicated physiotherapy service. Physiotherapists can clinically assess joint health, strength, coordination, and musculoskeletal function.16 They can monitor the long term health of your joints, and to help to prevent bleeds and the joint damage which occurs as a result of this by improving joint and muscle function, and offer advice on appropriate physical activity.16
Parents of those with haemophilia will be trained to give them injections of clotting factor, which can take place at home. As they get older, people with haemophilia will be taught how to inject themselves.17