Yesterday Dan Farthing (CEO) and Bill Wright (Chair) met with Alex Neil MSP, Cabinet Secretary for Health and Wellbeing at the Scottish Parliament.
The meeting followed our letter raising our concerns about the delay in publishing the Penrose Report but we had a much broader agenda.
Although he can’t influence the timing Mr Neil was confident that the autumn timetable for publishing the report would be met. However, he understood the frustrations of the community and is keen to hear more from us about alternatives to full Public Inquiries for the future. He also made it clear that he recognised there was a moral responsibility to respond quickly and fairly to the report.
The Cabinet Secretary is still very keen to see improved provision of psychosocial support for people affected by bleeding disorders in Scotland. He was been looking at the work which is being done in Wales and was interested in their progress. We have been invited to make some more specific proposals in the next few months.
Interferon-free Hepatitis C Treatment
We told Mr Neil that our view was that all of those affected by the contaminated blood disaster should have access to the best possible treatments for Hepatitis C. Following the decision of the Scottish Medicine Consortium to sanction the use of the first of these therapies Michael Matheson MSP, Minister for Public Health, has set up a group to bring forward recommendations on clinical use. Mr Neil undertook to facilitate our engagement with the group.
Longer Acting Clotting Factor Products
The Cabinet Secretary was very interested in the European Haemophilia Consortium campaign for an open market for the new, longer acting, clotting factor products. He has agreed to seek a meeting in Europe to raise our concerns.
The ability to have this kind I’d constructive dialogue with the Scottish Government is just one of the advantages of having set up Haemophilia Scotland.
We finished the meeting by giving Alex Neil a flyer for Factor 9 at the Edinburgh Fringe. After asking a bit more about it he said he’d do his best to attend.