1. Information about this survey

8% of survey complete.
Why have I been sent this survey and how will the research benefit me and others in Scotland's haemophiliac community?

This is a national survey of people with bleeding disorders and family members or carers who may benefit from Haemophilia Scotland or the Scottish Inherited Bleeding Disorder Network's support, information and advocacy services.

Our aim is to find out about needs and challenges facing people affected by bleeding disorders. The survey focuses on:
  • Health and wellbeing
  • Lifestyle
  • Employability 
  • Treatments
  • Issues affecting specific groups with bleeding disorders; children, women and older people
The research will help us to have informed discussions about how to design, improve and resource services. We are also gathering examples about the lived experience of bleeding disorders to help us articulate the needs of the community and highlight the importance of work carried by Haemophilia Scotland.

Findings will be presented in a final report and launched in the Scottish Parliament this Autumn.

Information about this survey:

It should take about twenty minutes to complete
  • If you click the "exit this survey" button (top right hand corner) your responses will be saved and you can return to it at a later point
  • Your response will only be seen by the researchers and all findings will be anonymised; so please speak freely
  • If you need help to complete the survey – for example if you would prefer to take part by telephone, have a paper copy posted to you or need the assistance of a translator - please do not hesitate to get in touch. The researchers – Lorraine Simpson and Elspeth Parsons from The Lines Between– will do their best to be flexible and accommodate you. You can contact their office on 0131 235 2012 or by email Lorraine@thelinesbetween.co.uk.

This research has been funded by a grant from Baxalta, a Shire company.