Haemophilia is an inherited bleeding disorder whereby one of the proteins in the blood, required for blood clotting is missing or insufficient. In Haemophilia A this is factor VIII and in Haemophilia B Factor IX. This means that when bleeding starts it does not stop for a long time. Haemophilia is characterised by bleeding most commonly into joints and muscles, but the pattern of bleeding is irregular and unpredictable. Bleeding can occur into any organ and can be potentially life-threatening. Over the course of years, repeated bleeds into joints causes long term damage and results in severe haemophilic arthritis.
The treatment of haemophilia involves intravenous injections of Factor VIII or IX concentrate and many patients/carers are trained to undertake this at home. Modern gold standard treatment involves administering factor on a prophylactic regime usually on alternate days to try and prevent bleeds occurring. As a consequence people with haemophilia now lead very active lives and have a normal life expectancy.
Home Treatment and Home Delivery
Patients who require regular or frequent treatment are taught how to administer the factor concentrate at home. For these patients a home delivery service exists where the factor is delivered directly to their homes. Patients find this service beneficial as it saves them the time and expense involved in collecting supplies from the hospital. The service is co-ordinated by the nurse specialists.
Patients treating themselves at home are requested to either keep paper records of their treatment and bring them to their appointments or treatment can be recorded online or on a smartphone iPhone via Haemtrack.