THE £12 million inquiry into the infected blood scandal “failed” patients, a support group claims.
In a submission to Holyrood, Haemophilia Scotland slammed the cross-border Penrose Inquiry, claiming it “failed to fulfil the reasonable expectation” of those infected with hepatitis C and HIV through the NHS in the 1970s and 80s.
An estimated 30,000 people across the UK contracted the conditions through blood transfusions and blood products, with Scotland the only place to hold an official inquiry into what went wrong.
In his findings last year, Lord Penrose said more should have been done to screen for transmittable conditions.
However, campaigners will tell MSPs today that the six-year process failed to answer important questions and that those affected still suffer from stigma and lack of support.
Ahead of a meeting of the Health and Sport Committee, Haemophilia Scotland thanked the Scottish Government for “recognising the pain” cause by the disaster.
However, the group said many issues raised by campaigners had been untouched by the inquiry, adding: “This is particularly disappointing given the significant investment of public money and the extremely long length of the process.”
These issues include whether or not missing medical records were lost to a “systematic destruction” of evidence and an official record of the facts of the contamination and transmission.
The group also hit out at the failure to give those affected “their day in court”, adding: “It is shocking that an inquiry costing over £12million and taking seven years could not find time to listen in person to the experiences of those who were infected, their loved ones, and the bereaved.
“The result was that the oral hearing days heard from very few affected individuals. The vast majority of witnesses were former clinicians and former civil servants.
“The impression was given that their, often incomplete, recollection of events was given much greater weight than that of those affected.”
A “lack of empathy” in the final report is also said to have caused “extreme anger” amongst those affected.
Described as the worst treatment disaster in NHS history, the contaminated blood scandal saw almost 3,000 Scots acquire hepatitis C from transfusion or blood product therapy between 1970 and 1991. Almost 80 acquired HIV through the same means.
Many of those involved were haemophilia patients and hundreds have died as a result.
Victims and relatives expressed anger when the Penrose report was published, with some burning copies of the “whitewash” on the streets of Edinburgh.
Contamination took place under the old NHS system before the creation of the Scottish Parliament, and last month UK Public Health Minister Jane Ellison announced plans to increase the sum available to those affected by £100 million, taking the total to £225 million to 2020.
However, she admitted “no amount of money could make up for the impact” of the infections on patients and families.
Haemophiliacs Scotland said the need for improved financial support was “extremely urgent”, with many of those affected “seriously ill and facing pressing financial hardship”.
In a report by the Scottish Infected Blood Forum set to go before the committee tomorrow, Health Secretary Shona Robison spoke of the long-term damage to patients and families, stating: “The enduring physical and psychological impacts of these infections are made very clear.
“There was huge fear, uncertainty and stigma caused by these diseases.
“Not only did infected people and their families have to try to deal with these illnesses but often this meant a situation of financial hardship.”
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