As well as providing support, haemophilia nurses educate about the importance of prophylactic treatment and of keeping treatment records (particularly at the time of any bleeding). They can also evaluate treatment response, and assess the impact of haemophilia on day-to-day life.
The support and education provided by nurses improves the understanding of haemophilia and it’s inheritance by patients and their families. It also enhances the benefits of haemophilia treatment and the importance of self-care and reduces the risks of long-term complications.
Today’s haemophilia nurses frequently support patients away from hospital, by phone and Internet and through home visits and liaison with local services. Many take an active role in engaging patients to decide and plan their own individualised treatment plans tailored to their own lifestyle and day-to-day activities, including risky activities such as sport. This therapeutic partnership has an important role to play in enhancing self-management and care
When hospital care is needed, the haemophilia nurse is the pivotal person in the team facilitating communication with other specialist services ensuring basic haemophilia knowledge is imparted to the teams caring for the patients and that they come to no harm.
This patient advocacy role promotes best outcomes for patients by ensuring communication, trouble shooting, coordinated care, monitoring and auditing outcomes and sharing best practice with other haemophilia nurses.
In developed countries, many children and young adults will have grown up receiving only prophylactic therapy. As a result, many experience very few joint bleeds: overall, they are fitter and healthier than any previous generation with haemophilia. It is because of excellent nursing care that boys as young as 5 years recognise the importance of treatment, with many aged over 10 years able to vocalise the importance of treatment in providing protection from unpredictable bleeding and reduced mobility, and enabling more normal lifestyles.
In the UK, the Haemophilia Nurses Association has, over many years, taken responsibility for educating haemophilia nurses, most notably through the development of the HNA Competency Framework. In partnership with Haemnet, the HNA now offers training courses in bleeding disorders management (“Contemporary Care of Patients with Bleeding Disorders”) and in the development of leadership skills, presentation skills and writing skills. Haemnet also runs the HNA’s annual educational meeting, through which it is able to offer grant funding to HNA members who wish to undertake specific research projects.
Across Europe, the interests of haemophilia nurses are promoted by the EAHAD Nurse Committee. This group has developed and published the European haemophilia nurses curriculum, and has also developed draft guidelines for haemophilia nursing care addressing:
- Intravenous administration of clotting factor (peripheral infusion and CVAD)
- Education of self-management skills for patients with a bleeding disorder
- Nursing care during surgery on a patient with a bleeding disorder