On behalf of the Scottish Government Health and Wellbeing Directorates, the Scottish Infected Blood Forum have been commissioned to manage a scoping exercise into the support needs of those infected or affected with hepatitis C through NHS treatment. Please note that the survey is restricted to infected and affected persons in Scotland. Those patients and families who were infected/affected by hepatitis C via a different route than NHS blood or blood products are outwith the scope of this particular exercise and should not complete the survey.
Although the focus of this exercise is on hepatitis C, it also addresses the effects of co-infection since there is a significant proportion of people who have faced additional challenges due to infected blood treatments.
The objectives for the scoping exercise are:
- To identify and engage with people who have been infected or affected with Hep C through contaminated NHS treatment, and to do so in an empathetic manner,
- To assess the need for various supports, in particular by identifying any current gaps in provision leading to unmet need, and
- To understand how people would prefer to be supported to best meet their own needs.
The final report of the Penrose Inquiry (the Scottish Public Inquiry into Hepatitis C/HIV acquired infection from NHS treatment in Scotland with blood and blood products) has not yet been published. The Inquiry’s website provides the latest position on the progress of the Inquiry: http://www.penroseinquiry.org.uk
which is that the report is expected by the end of the autumn of 2014.
The Scottish Government intend to review the existing financial support provisions for people who contracted hepatitis C from NHS blood or blood products when the final report and any recommendations of the Penrose Inquiry are being considered. The findings of the scoping exercise report will be considered as part of that review.
The survey form and guidance is attached. Although the initial deadline was Friday 29 August, this has now been extended to allow as many people to respond before the Penrose Inquiry Reports. Please post the completed form to:
PO Box 1
51 Wilson Street
If you have any questions, please call: Freephone 0800 970 6794.