Today, the Scottish Government have published an independent clinical review, which assesses the impacts of chronic hepatitis C infection on the health and wellbeing of individuals affected by contaminated blood and blood products infections. It looked particularly at the needs not receiving annual payments.
The clinical review group, led by Professor David Goldberg of Health Protection Scotland, considered both international evidence on the physical and mental health impacts of chronic hepatitis C (HCV) and data about and interviews with beneficiaries of the Scottish Infected Blood Support Scheme (SIBSS).
In March 2015, a Scottish statutory Public Inquiry, under Lord Penrose, found that 478 people with bleeding disorders were infected with Hep C in Scotland. Of these at least 60 were also infected with HIV. Many of those who were infected were children. Less than 251 of those infected with Hepatitis C are alive today and just 20 of those with HIV have survived. There are 478 bleeding disorders families in Scotland who have either lost a loved one to this disaster or are living with the infections or their aftermath. Furthermore, the Inquiry found that 2,500 people who received blood transfusions in this period were also infected. At the time of publication there were 471 survivors of blood transfusion infection in Scotland.
Following the Penrose Inquiry Final Report, and a formal apology in the Scottish Parliament, the Scottish Government established a Financial Review Group to work with affected people to produce recommendations on how to fulfil the moral responsibility of the Scottish Government to those affected. The work of the Financial Review Group led to the establishment of a new financial support scheme in Scotland, SIBSS, and also recommended that a Clinical Review was conducted so the scheme could better reflect the true impact of the disaster.
The review found evidence that chronic HCV has a negative impact on the mental health of those affected and recommends that SIBSS beneficiaries should qualify for an annual payment in future based on their own self-assessment of the impact of their HCV on their life.
It also found evidence that those with chronic HCV are at increased risk of renal disease due to Membranoproliferative Glomerulonephritis (MPGN) and therefore recommends that any SIBSS beneficiaries affected by this should in future qualify for advanced HCV payments.
Professor Goldberg will be coming to the joint Haemophilia Scotland / Scottish Infected Blood Forum meeting this Saturday to discuss the report and its findings. If you would like to attend and ask a question then please register straight away. The meeting will also discuss the Infected Blood Inquiry with a member of the Inquiry team following the recently publication of its Terms of Reference.