Barbara is a member of the All Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood which is a cross-party group of over 100 MPs and Peers. Its aim is to raise awareness of haemophilia, bleeding disorders and the contaminated blood tragedy issues, and influence legislation and policy to improve the lives of the affected community.
This APPG has now launched an Inquiry into the current systems of licensing, commissioning and prescription of available treatment options for people with bleeding disorders and it will review the implications the current system may have on future access to new treatments.
One of the aims of the survey is to find out where the processes are working well and when they are not. The APPG will then make recommendations for how the processes could be changed to improve access to treatments and outcomes for people with bleeding disorders.
The Inquiry would like to hear directly from people who have bleeding disorders including those who were infected with HIV and Hepatitis via their NHS treatment in the 1970s and 1980s.
The report will revolve around the key questions:
- In your experience, is the current standard of care for bleeding disorders good enough in the UK?
- How aware are you of the current system of licensing and commissioning of treatments for bleeding disorders, if at all? Do you feel this impacts on your treatment?
- What changes would you like to see as a means of improving outcomes for people with bleeding disorders?
- Is there any other evidence or information you wish to make available to the APPG?
You can email the answers to the questions above to firstname.lastname@example.org
Or you can complete the survey online by clicking this link: Haemophilia and Contaminated Blood: Access to treatment survey
If you have any questions about the Inquiry you can contact the APPG on Haemophilia and Contaminated Blood on 020 7939 0780 or by email.
All responses will be treated in the strictest confidence.