Dad suffered 'lifetime of trauma' in 'worst treatment history in NHS'

The sister of a man who “endured a lifetime of trauma” in what is being called the “worst treatment disaster in the history of the NHS” has spoken out. Janet Stuart’s brother Paul Mackey was “an independent spirit who was honest, funny and intelligent while possessing a sharp fashion sense”.

In 1994, his life changed forever after being admitted to hospital following a minor car accident. It soon became clear to the Southport family the dad-of-one had been a victim of the infected blood scandal.

The scandal saw more than 30,000 people infected with HIV and hepatitis C from contaminated blood products and transfusions over a 20-year period. As a result of the disastrous mishap, over 3,000 of them, including Paul, have since died.

The government announced on Friday, August 16, that victims would receive financial support for life, with the first payments likely being made by the end of the year. The payout amount will vary on individual circumstances and is being judged under five criteria, but it has been reported the sum would be up to £2m pounds.

Janet, 51, said the compensation felt “tokenistic, calculated and ironically clinical” to her. She told the ECHO: “I’ve had to put myself out of the arena of everything the last few months just because it is so upsetting. I was feeling quite good until it all of a sudden rears its head again in the news. I’m feeling really emotional and extremely overwhelmed.

"It feels we are being put into bandings that don’t recognise the impact it had - especially on those with relationships with people directly affected. It’s an insult really. They are righting a wrong in an academic sense and how they would do so in a court of law. But I don’t think they are giving it the true merit that it deserves in terms of the psychological impact.

“There is a lot of emotion tied up to this and that feels overlooked right now. It isn’t enough for family members. It’s a nuanced situation which is trying to come across as black and white, but that couldn’t be further from the case.”

Paul had mild Haemophilia A which is a genetic disorder. It is the most common form of haemophilia and can result in spontaneous or prolonged bleeding. Janet says Paul received FVIII concentrate, a purified plasma-derived concentrate, that treats bleeding episodes, twice, in 1977 and 1983, to treat his condition.

At the time these concentrates, in the form of a white powder stored in glass bottles, were one way in which haemophiliacs' missing Factor VIII could be replaced through simple infusion into the bloodstream. Concentrates were made of plasma from tens of thousands of people and as such created a high-risk path for viral transmission, amplifying infection risk. Such unsafe products were used in the UK and the results were devastating.

Every haemophiliac treated with said concentrates was exposed to Hepatitis C and around 1,250 were also infected with HIV - establishing what is known today as the Infected Blood Scandal.

Janet added: “For a person to go through a lifetime of trauma, it just doesn’t feel enough what is being offered. The people who will get the life-changing money, they have also had their lives changed irrevocably because of the scandal. Our families' lives changed beyond all recognition. We lost my brother, he’s dead and otherwise, he wouldn’t have been.”

Janet said Paul was “angry and upset” after receiving his diagnosis. She said: "I'd gone to see him and he was just broken down and that's when he told me that he had it. Just that sense of shame, especially because of the messages we were getting at the time in terms of the implications of it.

“It was more around the shame of having it and not wanting to tell anybody, it exacerbated that shame and that guilt. Even though it was something that was done to him. It was still something that he felt really psychologically disturbed by because he couldn't talk about it and he was told not to talk about it, which then made it feel worse."

The Infected Blood Inquiry

An inquiry into the NHS disaster earlier this year found that the scandal "could largely have been avoided" and that there was a "pervasive" attempt by authorities to cover up the truth. However, this only came after Paul's and many others' deaths.

The review found deliberate attempts were made to conceal the disaster, including evidence of Whitehall officials destroying documents. The probe said patients were knowingly exposed to unacceptable risks of infection

The 2,527-page report documented a “catalogue of failures” which had “catastrophic” consequences, not only among people infected with contaminated blood and blood products but also their loved ones. Sir Brian Langstaff's report states: "Viewing the response of the NHS and of government overall, the answer to the question ‘Was there a cover-up?’ is that there has been.

“Not in the sense of a handful of people plotting in an orchestrated conspiracy to mislead, but in a way that was more subtle, more pervasive and more chilling in its implications. In this way, there has been a hiding of much of the truth.”

It is one of the largest UK public inquiries. Some 374 people gave oral evidence, and the inquiry received more than 5,000 witness statements and reviewed more than 100,000 documents. Sir Langstaff said the “level of suffering is difficult to comprehend” and that the harm done to people has been compounded by the reaction of successive governments, the NHS and the medical profession.

He added that repeated claims from successive governments that patients received the best medical treatment at the time, and that blood screening had been introduced at the earliest opportunity were “untrue”.