Yesterday, 27 Sept 2018, representatives of Haemophilia Scotland and the Scottish Infected Blood Forum met Joe FitzPatrick MSP, Minister for Public Health, Sport and Wellbeing, to discuss the Scottish Government’s response to the Clinical Review of the Impacts of Hepatitis C: Short Life Working Group Report published on 7 July.
Recommendations accepted in full
The Minister told us he is accepting the recommendations in full. The central recommendation of the report was that those in the chronic category of support, including widow(er)s from the Scottish Infected Blood Support Scheme (SIBSS) should be asked to self categorise themselves on the basis of how severely affected they have been by their infection with Hepatitis C and that ongoing regular payments should be introduced.
The recommendations also include making progress on the permanent provision of specialist psychological support for everyone affected. It is currently only available as a pilot to people from the inherited bleeding disorders community.
Categorisation before amounts
The Scottish Government have decided to ask affected people to identify which group they are in before they decide how much the regular payments will be for each category.
People will be asked to re categorize themselves every three years as a matter of course but will be able to change their categorisation at any point if their situation changes.
When the amounts are determined the payments will be backdated to the start of September. The time it has taken to publish the report and respond to it has been frustrating for those affected. Backdating to the start of this month will mean that people are not financially penalised for the time it takes to complete the categorisation and determine the level of the new payments.
SIBSS to issue forms shortly
Draft forms and guidance have already been produced and are being finalised as quickly as possible so that they can be issued by the SIBSS. It is very important that the forms are as straightforward as possible to complete and the accompanying guidance makes it as clear as possible for people to work out which category applies to them.
People will be able to get advice about completing the self-categorising from SIBSS, Haemophilia Scotland, and the SIBSS. A combined training day is being planned to help make sure everyone giving advice has the same information.
There will be a different form for widow(er)s which will let them take account of both the impact on them personally and the impact on their partner in the two years before their death.
Haemophilia Scotland and the Scottish Infected Support Group have also asked for a commitment that the arrangements will be looked at again in the light of evidence and/or recommendations coming out of the Infected Blood Inquiry. The Scottish Government committed to conduct this review.
We also raised some of the outstanding issues with the scheme including,
- The difficulties people have experiences in receiving discretionary grants. The take-up of these grants is lower than was expected which we believe is evidence that the threshold for being awarded a grant is too high.
- The need to provide better support to family members with caring responsibilities as a result of the infections. Joe FitzPatrick MSP highlighted the progress that the Scottish Government is making implementing the new Carers Act.
- The double lock to entry to the SIBSS. While other schemes in the UK only require that someone established that they were affected in the appropriate country, the Scottish scheme requires that someone was both infected Scotland and were resident in Scotland when they first applied to any scheme for support. A specific case, that was raised at the last joint campaign meeting in Glasgow, was used to illustrate the hardship caused to those not able to join the SIBSS.