Cabinet Secretary for Health and Sport, Shona Robison MSP, has written to Haemophilia Scotland announcing that Professor David Goldberg has agreed to chair a new Clinical Review Group to provide recommendations to the new Scottish Infected Blood Support Scheme.
Professor Goldberg is a consultant in Public Medicine and a Consultant Clinical Epidemiologist. He will be familiar to those following work on this issue in Scotland as the former Chair of the Penrose Short Life Working Group which made recommendations about searching for the missing victims of the contaminated blood disaster in Scotland.
The new group will be looking at the latest international scientific and clinical evidence to address some of the outstanding issues for the implementation of the new SIBSS. Haemophilia Scotland will have a representative on the group. It will look at,
- How to assess the overall health impact of hepatitis C so that appropriate guidelines can be developed for assessing people for ongoing support payments. The Skipton Fund only looked at liver damage when assessing people for moving from their Stage 1 to Stage 2 payments. SIBSS will be looking at the whole health impact when deciding if to move people from the chronic payment to advanced payments.
- The Scottish Government is committed to making the on-going payments to widows of those who die when in receipt of the advanced payments (the equivalent of the old Stage 2 or MFT payments). Crucially these payments will also be made to the widow(er)s of those who die at the chronic stage (the old Stage 1) where hepatitis C “contributed directly to the death of the primary recipient.” The new group will make recommendations about how that should be determined.
The full membership of the Clinical Review Group, and date of the first meeting, has not been announced but both are expected soon.
In her letter Shona Robison MSP also announced that, following the conclusion of the Clinical Review Group, a working group would be established to look at the issue of lump sum payments. The Scottish Government has committed to giving people the option to exchange their entitlement to on-going payments in exchange for a one-off lump sum. The Scottish Government believes that the work of the Clinical Review Group will be relevant to these discussion and that there may have to be a system for deciding who can apply for any lump sum option in the first instance.
You can read the Cabinet Secretary’s letter in full, including the full terms of reference for the Clinical Review Group. You can also read all recent letters between Haemophilia Scotland and the Scottish Government, include Bill Wright’s latest reply on our campaigning timeline.