The suffering of the families and victims infected with Hepatitis C from NHS blood and blood products has been revealed in documents released by the Penrose Inquiry into the scandal.
The release of the detailed personal accounts follows the release of testimonies back in August from those infected with HIV. The documents provide an emotional insight into how one of the most significant scandals to hit the NHS turned the lives of the victims and the families upside down.
The Inquiry, conducted by Lord Penrose, was set up in 2008 following a lengthy campaign by the victims, their families and Thompsons Solicitors to get answers and learn lessons from a scandal which saw hundreds of patients and haemophiliacs across Scotland infected with Hepatitis C and HIV through blood and blood products administered in NHS hospitals in the 70s and 80s.
The Inquiry is close to completing its public hearings – the last being Friday 30 March 2012 where closing statements will be made by lawyers from the various parties involved including the victims. Lord Penrose will then consider the evidence and come forward with a report.
Partner at Thompsons Solicitors and solicitor for the victims, Patrick McGuire, said:
“Behind this scandal lie incredibly emotional stories of human suffering and injustice. We must never forget that.
“It is impossible for any of us to even begin to understand what the victims of this scandal have been through. They were infected with Hepatitis C and HIV through no fault of their own.
“They deserve the fullest answers possible to what happened; nothing less.
“This is a tragedy that has devastated lives and exposed serious failings in the administration of blood products in Scotland. Real lessons must be learned to ensure that no one will ever suffer in this way again.”
“Bridie” is one of the people whose testimony has been published by the Inquiry. Her mother was diagnosed with Hepatitis C in 1996. She contracted the disease via a blood transfusion in 1974 while giving birth to a fourth child which she tragically lost. She said:
“The anger never goes away. These blood transfusions saved my mother’s life at the time, but the blood she was given cut her life short.
“I feel like I didn’t really get to know my mum properly. I was four at the time she had the transfusion and she was constantly ill while I was growing up. I was told that she was different before she got ill; a lot happier and she enjoyed life. My brother, sister and I feel cheated as we never really knew our mother.”
Hospital staff initially presumed that her mother was an alcoholic after an operation to remove her gallbladder in 1994 revealed liver cirrhosis; but she didn’t drink. She was however diagnosed with Hepatitis C in 1996. She underwent treatment for the disease but 6 months after her treatment she was told that she still tested positive for the virus. It was a difficult time:
“She went through so much. People thought she was an alcoholic because of the cirrhosis, but she didn’t drink.
“The treatment had such a bad effect on her; she was tired, would cry, her days and her nights were turned round and she was always sore.”
As her mother’s illness got worse and worse it had a serious effect on the whole family, both emotionally and financially. Her father, who she describes as her mother’s lifetime soulmate, stopped work in 1998 and couldn’t go back to work due to his wife’s illness. She continued:
“My mother’s illness affected my father in so many ways. The whole thing knocked him sideways and turned our lives upside down. He became a virtual recluse and they had no money.
“My brother, sister and I would buy things like petrol and food to help them get by.
After her father’s death in 2007, “Bridie” became her mother’s primary carer, holding down a full-time job and looking after her son. She says she was almost on 24 hour call for her mother:
“To see someone you love go through such pain is an experience I wouldn’t wish on anyone. It was hard. I was on 24 hour call, looking after my mum, my son and making sure we had enough money to get by. On top of this I was angry, because my mum’s illness could so easily have been avoided.
She said that the victims of the scandal deserve answers:
“We deserve full answers to how this happened and at least a public apology as the public deserve to know about this.
“I also think that those affected, especially those still alive, should be financially compensated and it should never ever be allowed to happen again.”
Further extracts from other testimonies published:
“Anne” was diagnosed with Hepatitis C in 1995 following a blood transfusion in 1986. She said the effects of the interferon treatment had a significant psychological effect on her and her family. In the transcripts she says:
“I was described by my family as snapping at people for no reason. I spent one weekend in bed communicating with no one. I also noticed that I was suffering from what I would describe as panic attacks…
“In one rant I kicked a door instead of my mother, who is 85 years old. I was consumed with uncontrollable and involuntary anger. I’m so ashamed of this. I jumped in my car and took a long drive in tears…
“Questioner: You tell us at the end of paragraph 16 [of Anne’s statement to the Inquiry] that at one stage things were so bad for you that you told your sister that you could understand why someone might be driven to suicide, and you cannot believe now that you said that to her…”
Describing the physical impact of the treatment she said:
“I had to take paracetamol every week to two weeks. My temperature fluctuated. I felt cold and clammy. I was shivery. I felt hot. I had a dry mouth. I produced less saliva due to interferon treatment. I had dry skin and suffered alopecia.
“I saw my hair on the pillow and in the shower…
“My appetite was suppressed. I did not feel hungry. I had to force myself to eat.
Summarising the impact Hepatitis C has had on her life she said in her statement:
“It has had a profound impact. It has reduced my life opportunity in terms of maintaining personal relationships, obtaining employment chances and the subsequent economic disadvantage suffered by me as a result.
“In my opinion, this is why I remain single and did not progress or encourage potential marriage options. I was a young woman when this happened to me. I did not encourage any long-term relationships. You have to draw the risk of transmission of this virus to someone’s attention right away. My confidence to do so was non-existent. I have missed out with the opportunity of potentially raising a family of my own.”
In her sister’s statement to the Inquiry, read out by the questioner, she says that she struggled not to take Anne’s abusive behaviour personally:
“It was awful and [Anne] stayed in her room for about ten days. Prior to the interferon treatment starting, the whole family was aware of the potential side effects because [Anne] shared this information with us. However, despite that, I did take the insults and volatile behaviour personally. It’s easy to forget that this period of hostility was all because of the interferon…”
“Stephen” was infected with Hepatitis C and HIV through blood products treating his haemophilia. In the transcripts he describes how he felt singled out as different on a plane journey to America when he was given a form with a question: are you a Nazi, a terrorist or HIV positive?:
“You get these forms. You don’t get them now… Everybody got a green form but I always got a white one. There were a number of questions: are you a terrorist, are you a Nazi, are you HIV positive? You can maybe see the resemblance between Nazis and terrorists but not HIV positive. I’m just a simple guy. And obviously that’s the one I had to pick, which can be quite degrading to be honest.”
Describing the physical effects of the disease and his treatment:
“Questioner: You list in paragraph 14 some of the side effects that you experienced, or which may have been symptoms of your liver disease too, but low levels of concentration, no energy, severe nose bleeds, loss of appetite, thinning of your hair, severe muscle cramps, insomnia, nausea and vomiting. Were you experiencing these symptoms during your treatment?
Stephen: I had them all. I remember one time I had cramp in just about every single joint in my body at the same time. There is nothing you can do about it.”
In 2005 he was rushed to hospital suffering from liver failure, septicaemia and was bleeding from his gullet. He was in a coma for 9 days and his wife was told to prepare for the worst:
“From what I can remember, what she [his wife] has told me is it was 40/60 chance of surviving … as I said, you know, the body was showing signs of closing down from the inside out. My kidneys I think had stopped working. And I think she was basically told to prepare for the worst.”
In 2007 he was told he had heart failure which required a risky operation to resolve. He was told he could only have two or three days to live:
“I think the biggest shock came when I was re-admitted … it was with swollen legs, obviously ascites, and struggling breathing. We thought it was asthma. We had no idea it was anything to do with the heart. So when someone comes and tells you you have got two or three days to live, it came as a huge shock.”
Doctors eventually agreed to surgery, which he survived against all odds. He said the odds were less than 1 per cent:
“The odds were “We need a miracle”. It was less than 1 per cent. You can’t get worse odds than that.”
Speaking of telling his daughter about his condition at the time, he said:
“Telling her that I was going to die and watching her face is something that I will never, ever forget….
“I wanted to tell her because I didn’t want that to be left to my wife, had I died. So we told her that and let’s hope I never have to do it again. I don’t know what she was thinking. I’ll never ask her.”
Speaking of the financial effects of the diseases he said:
“I am lucky that I could do what I did in terms of finance. Not everybody can do that and that’s where I think someone needs to sit up and look. Some people are on their own.
“Some people with family couldn’t afford to stay in Edinburgh for six weeks or however long it was, and it’s fine for me because I could afford it but there are some people who can’t, and it’s not just me, it’s other people, and that’s where I think that the people up there just don’t appreciate that.
“I’m not motivated by money in any shape or form but there is no way I should be out of pocket for this and, you know, to pay, say, in excess of £1,000 to park a car for a disease that the NHS has given you just beggars belief, it really does.”