Early this year The Haemophilia Society began a project to understand the experiences of families when their child is initially diagnosed with a bleeding disorder. Drawing on some of the stories shared through our #bruisednotabused campaign we reached out to our community to ask them to share their experiences.
We are extremely grateful to the families that took the time to be interviewed or contributed their stories to this report, without them we would not have been able to complete this project.
The Haemophilia Society conducted this research in order to highlight some of the challenges that families face during the time that a child is initially diagnosed with a bleeding disorder. In doing so, our primary aim is for families to feel reassured that they are not alone during this time and that there is a community of support available once a child is diagnosed.
This main findings from this project were that:
1. Many parents find safeguarding processes to be the most stressful period of their child’s diagnosis
2. Girls with bleeding disorders often have difficulty in getting a diagnosis
3. Information following diagnosis does little to help confusion about bleeding disorders and their implications
4. Many parents find that the most useful information they received came from other parents in the community
5. Many parents feel that access to emotional counselling and support would have helped them during this time
Based on the report, we have produced a series of recommendations aimed at safeguarding professionals, healthcare professionals and policy makers, that we hope will be adopted to improve the experience of families during initial diagnosis in the future.
You can read the report in full here.