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SIBF and Haemophilia Scotland issued a joint letter to Scottish Health Secretary, Shona Robison, on 17th January highlighting the inequity of treatment of ‘stage 1’ widows.

The Cabinet Secretary’s response highlights Scottish Government’s focus on limited financial resources and her view that the stage 1 widows issue should be rolled-in with the currently on-going Clinical Review for ‘stage 1’s’.

Since the Clinical Review Group’s terms of reference did not include the capacity to translate medical evidence from the report to a range of possible annual financial support payments to stage 1’s (that decision has been reserved by the Scottish Government), the SIBF and Haemophilia Scotland have agreed to compile and submit companion recommendations on financial translations from the Clinical Review Group’s final report when it is published, hopefully later in the Spring.

And both charities have agreed to include the lump sum issue for stage 1 widows in that report.

The text of both letters is included below:

 

Ref.: STAGE ONE WIDOWS INFECTED BLOOD SUPPORT PAYMENTS

Dear Cabinet Secretary,

We are writing to you further on the subject of what we believe is the unfairness that Stage 1 widows have suffered under the SIBSS and their not receiving the £30,000 that other widows have received either after their husbands are dead or with their husbands while still alive. Further information has come to light about the number of widows involved and we believe it is time for a fresh perspective on this vexed and divisive matter.

We suggest that this is an anomaly that needs to be addressed separately to the current Clinical Review and the very good work being conducted by Professor David Goldberg. The reason we believe it needs to be addressed separately is simple.

Stage 2 widows whose husbands die or have died do not have to prove that Hepatitis C was the cause of death.  In other words whether or not HCV was or is the cause of death does not have to be proved for Stage 2 widows to benefit under the scheme.

Stage 1 widows whose husbands die after the launch of the Scottish Support Scheme will have shared with their husbands benefitting from £30,000 and enjoyed a longer time shared with their partners / husbands.

Stage 1 widows whose husbands/partners died in Scotland prior to the establishment of the scheme not only have had less time spent with husbands / partners but have received no such recognition under the Scottish Scheme even though they were infected in Scotland, other than odd circumstances involving extra assessment under the support and grant assistance scheme.

It has come to light from SIBSS records that these widows are 12 in number. We remain of the view that in the race to complete the Financial Review within a very tight time deadline, insufficient attention was awarded to this particular anomaly and as you are aware it was never our intention to leave out this particular group from those affected and thus benefitting from the scheme.

We welcome the assertion you yourself have made that this is an evolving scheme and that we need to take a ‘can do’ approach in the scheme’s development. We urge you to consider extending the payment of £30,000 to these 12 people prior to the end of March to indicate that their situation is being recognised, whatever the outcome of the clinical review.

Needless to say we are happy to discuss the matter further.

With kind regards.

Yours sincerely,

Bill Wright

Chair, Haemophilia Scotland

John Rice

Convener, Scottish Infected Blood Forum

 

23rd February 2018

Dear Bill and John

Thank you for your letter of 17 January 2018 regarding payment of an additional £30,000 lump sum to the widows and widowers of those classed as having chronic hepatitis C (HCV) infection only (previously known as Stage 1) by the Scottish Infected Blood Support Scheme (SIBSS). As you know, Professor David Goldberg of Health Protection Scotland is currently leading a clinical review of the impacts of hepatitis C infection that is expected to report in the next few months. The report will reflect on the evidence-base for the current distinctions between chronic and advanced HCV support and eligibility criteria and consider options for tailoring financial support more closely to the specific level of impact. I believe you will also produce a minority report on the infected blood community’s own preferences for future financial support.

Though I agree it is important that we consider this further, I do not see the additional lump sum for Stage 1 widows and widowers as a separate issue to the ongoing review. In my view, this proposal should be considered in light of the conclusions and recommendations of the forthcoming review. Although the number of these widows and widowers who are members of SIBSS is relatively small (and in fact a number of these widows did receive the £30,000 payment as their spouse died after 1 April 2016), the number who have chosen to join SIBSS is not likely to represent all of the widows or widowers that would come forward to claim the lump sum if it were made available. In addition, if the payment were made available to widows and widowers, we would also have to consider whether it would be appropriate not to release the lump sum to estates of the deceased, given that other lump sum payments are made to estates and many estates might argue they should receive the same funds. That would significantly increase the number of lump sums which needed to be paid, which would reduce the funds available to other scheme beneficiaries.

In addition, it is worth reiterating that SIBSS already provides income top-up grants to support those widows, widowers and partners of the deceased who are in financial need and they are all eligible for an annual £1000 living costs supplement, regardless of income.

As you know, where it is demonstrated that the HCV infection or HCV treatment has directly contributed to the person’s death, the widow, widower or partner of the deceased is already eligible for an annual payment of £20,250. The Stage 1 group you are referring to have presumably not been able to find sufficient evidence to demonstrate this link. You note that widows and widowers of those with advanced HCV (also known as Stage 2) are automatically eligible for the annual payment. This is because it is generally accepted that the Stage 2 conditions have a significant impact on life expectancy, even if the cause of death was not specifically linked to HCV. Whilst we could have made it a requirement that widows, widowers and partners demonstrate that their spouse or partner died as a result of their HCV, it was felt that this would not be consistent with the Financial Review Group’s recommendation that all widows of those at Stage 2 should receive the payment.

Finally, Professor Goldberg has interviewed a small random sample of this group as part of the clinical review and I am sure the impacts on them will be reflected in his report. I am happy to consider your proposal when I have received the review report, but would recommend that you carefully consider your priorities with regard to future financial support and how these would best be addressed with the funding available.

Best wishes,

Shona

 

 

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