Clinical Review of the Impacts of Hepatitis C – report published by Scottish Government

Reaction – Infected Blood Inquiry – Terms of Reference
6th July 2018
Joint member meeting, Saturday 14th July
19th July 2018
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The Scottish Government has published the Clinical Review Group’s Report of the Impacts of Hepatitis C.

It can be downloaded here  (the Scottish Government external site source is: https://www.gov.scot/Resource/0053/00538235.pdf)

The report’s formal extended title is:

‘Informing Decision Making on Awards for People, without Advanced Hepatitis C (HCV) Disease, who were Infected with Hepatitis C through NHS Blood Transfusion/Treatment with Blood Products, and for their Widows, Widowers, Civil Partners or Long-term Partners’

The report recommends a form of tiered self-declaration for receipt of annual support payments. It rules out any type of means-testing or clinical-based assessment.

The Scottish Government’s own brief Executive Summary on its publication webpage (https://www.gov.scot/Publications/2018/07/1542) is unfortunately misleading when taken in isolation. It states the Report “found limited evidence of physical health impacts of chronic HCV”. We would hope this does not pre-empt a downplay of the compelling findings in the Report to justify an unfavourable or inadequate response. Scottish Government will provide a financial translation and a full response to the report in due course and we eagerly await that.

John Rice, the Convener of the Scottish Infected Blood Forum commented, saying:

“The Scottish Infected Blood Forum welcomes this report which recognises the horrendous health impacts and financial detriments suffered by those chronically infected with hep C caused by contaminated blood and blood products who went into hospital and clinics trusting that clinicians would ‘do no harm’.

The negative health impacts go far beyond the terrible consequences of having a chronically damaged liver – and what could be more detrimental than premature death from liver disease. Other bodily organs and systems are now also acknowledged to be compromised, either by the viruses or the highly toxic (and previously quite ineffective) anti-viral treatments.

The report especially acknowledges what our members have been saying for decades about the substantial mental health impacts that have blighted many hundreds of lives in Scotland, the lives of the infected and their wives, husbands, partners and children. It also highlights the lost physical health, lost finances, lost opportunities, lost jobs, in some cases lost homes and lost hope of so many innocent people and their families.

This report also recognises the widows and widowers of those who have already died and the ‘double whammy’ suffered by these families where a main income earner has lost their job due to being infected, and then their spouse has had to curtail their own job to act as the carer for their loved one. This tragic situation results in massively reduced household income and reduced pension pots for later life (i.e. now), and subsistence at poverty levels for many.

For far too long those with the power (and responsibility) to act to do the right thing have been in denial or too busy wringing their hands at a situation which was almost too large to contemplate. Thousands of people who relied on their health service to make them better had actually been made far worse, producing a legacy of pain, distress and loss which no person should have to endure – at least not without adequate recognition and support for their suffering. This report finally recognises and articulates what people have had to endure for years. Now it is time for a proper response.

We now expect the Scottish financial support scheme to be re-designed to allow and cater for the expected annual payments due to those chronically infected and affected by contaminated blood/products, and particularly the 12 widows of husbands who were chronically infected and have already died while at ‘stage 1’ of the disease.

The Scottish Government has lead the way in recognising the deficiencies in the previous and current systems of support and we trust they will do the right thing by the relatively few remaining people and their families; out of the almost 3,000 who received infected blood and blood products. They are innocents but they have been made to feel like lepers, many of them over decades. They have lost much and they now, at last, deserve commensurate on-going financial support from a Government which has acknowledged its ‘moral responsibility’ to support and look after them.”

 

The Chair of the Clinical Review Group, Professor David Goldberg, will be attending our joint meeting with Haemophilia Scotland on Saturday 14 July to discuss the Report and take your questions.

If you haven’t already done so please Register your intention to attend by clicking the link below.

Register

If you can’t make it, please get in touch with the Forum’s Tommy Leggate or Dan Farthing of Haemophilia Scotland with any points you would like to make that could be discussed at the meeting.

 

A reminder of the meeting details are shown below:

Joint Member Meeting
WHERE: Mercure Glasgow City Hotel (Buchanan Suite)
WHEN: Saturday July 14th, 11.30am-4.30pm

The Scottish Infected Blood Forum and Haemophilia Scotland are jointly hosting a member campaign meeting to discuss the Clinical Review Group’s report on annual support payments for stage 1’s (chronically infected) and the latest information regarding the UK Public Inquiry. The meeting will be lengthy to allow in depth updates and discussions to take place.

The Chair of the Clinical Review Group, Professor Goldberg, as a guest speaker to discuss the Clinical Review Group’s report to Scottish Government and to take your questions.

We will also have representatives from the Public Inquiry team in London attending, principally the Inquiry Secretary (Jennifer Cole OBE), to give affected people in Scotland up to date information and an opportunity to ask questions.

This will be a very important meeting to attend and we urge all members and those affected by the contaminated blood disaster to attend if at all possible.

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