Pain and Haemophilia | Project Phoenix

We know that pain is common among people with haemophilia. The impacts of living with chronic pain are known too – functional limitations affecting the activities of everyday life, negative mood and susceptibility to poor mental wellbeing, reduced quality of life. But even in these times of unprecedented access to effective treatment, many people with haemophilia live with chronic pain as a result of the musculoskeletal complications caused by joint bleeds. Pain management is among the topics discussed during Haemnet’s Project Phoenix, an initiative identifying the changes in care that could make a real difference to the lives of people with bleeding disorders. Data gathering for the project involved a survey and a series of one-to-one interviews and focus groups, in which people with bleeding disorders, their parents and carers, and health care professionals involved in delivering bleeding disorders care shared their experiences. In the Project Phoenix survey pain management was ranked alongside bleed management as the most important service people with bleeding disorders wanted to access as part of their overall care – but it was also identified as a source of frustration in terms of the care they currently receive. In the interviews and focus groups, we heard stories from people with haemophilia who live with chronic pain which helped us better understand this dichotomy. Our short animation John’s Story is based on one of the people with haemophilia who shared their story with Project Phoenix and highlights the pain management treatment gap in haemophilia care.