Let's Talk | Project Phoenix

Haemnet’s Project Phoenix is an initiative to better understand the changes in care that could make a real and positive impact on the lives of people with bleeding disorders in the UK. Data gathering for the project involved a survey and a series of one-to-one interviews and focus groups with people with bleeding disorders, their parents and carers, and health care professionals. It is increasingly recognised that individuals and families affected by bleeding disorders benefit from wellbeing and psychological support. Questions about access to psychological support were an important part of Project Phoenix. Many people with bleeding disorders and their family members who completed the survey said that access to psychology services, when needed, was important to them as part of their overall care. And during the interviews and focus groups, we also heard that people with bleeding disorders were willing to share their own experiences where this could help others. At times, living with a bleeding disorder, or caring for a child with a bleeding disorder can raise feelings of anxiety, fear and isolation. During the interviews and focus groups, we heard examples of how connecting with others in the bleeding disorders community can have a positive impact on wellbeing. Speaking with someone who understands your situation and can empathise because they have had the same or similar experiences themselves can be an invaluable source of support. The bleeding disorders community is well served by patient organisations and informal peer support networks, including social media groups. The UK haemophilia societies can help you find out more: • The Haemophilia Society (UK-wide) • Haemophilia Scotland • Haemophilia Wales • Haemophilia NI Find out more about Haemnet and what we do! www.haemnet.com