Day 51 of the Infected Blood Inquiry hearings, London

On October 17th we heard evidence from people all in very different circumstances:the first a man who didn’t even need the infected blood he was given, but was given it anyway as the result of a misdiagnosis; another who was infected as a child in connection with his haemophilia and who then suffered a lifetime of health problems as a result, compounded with being discriminated against because he was gay; and also the heart breaking testimony of a recently bereaved widow, who had spent the majority of her marriage having to care for her husband who received blood as a result of having beta thalassaemia major.
As always we would encourage you to watch or read the evidence online to hear the full breadth of their experiences and the shocking way they were all treated over the years. Stuart
He was given Factor 8 in 1978 as it was believed at that time that he had a blood clotting disorder (Von Willebrands) though a firm diagnosis was never made even many years later and he was able to illustrate through documentation the many disagreements from different doctors about this.
He was tested without his knowledge for HIV and hep B in the 1980’s but it was not until 2013 that he was finally diagnosed with hepatitis C, some 35 years after being infected.  This is surprising as aside from the risk he had been at by having blood products back then, it was also noted that he had dramatic symptoms of liver illness (in particular, jaundice) as far back as the early 90’s, though these were subsequently put down to Gilbert’s Syndrome.
He talked about how devastated he was by the diagnosis and how he searched the information having been given no information about it.  There were many “horror stories” that frightened him – how it led to an awful death, the increased risk of liver cancer and more.  Subsequent tests, however, did suggest that despite an enlarged spleen his liver was not badly damaged, so he was advised to wait for the advent of new treatments.He continued to be on the end of confusing medical advice even by the time that new treatments became available and now doesn’t feel able to trust that there will not be any negative impact on his other health conditions if he embarks on it, as he was reassured verbally, but when he asked for  evidence to be provided, the doctor hadn’t checked.
Stuart described how all this destroyed his life – his career, his marriage – and he remains unable understand why they gave him a treatment that he didn’t need for a condition he didn’t have, which then led to him having hep C and the additional threat of vCJD.
He described how he “decontaminated” his house by throwing everything away after he had an accident and bled and also how he has been on the receiving end of vicious abuse from neighbours who found out about his status.
All this has left him feeling depressed, worthless, dirty and he suffers with uncontrollable anger as a result.   Mark and Richard
Mark had haemophilia A and was treated at Great Ormond Street Hospital from 1972 – 1983.  He spent more time in hospital than at school.  Amongst various blood products, including Factor 8 that he was given over the years, neither he nor his family were ever advised of any potential risks.  In 1984 when leaving the Royal Free Hospital after a synovectomy, he recalled how he was informed of his HIV diagnosis: “As my dad was wheeling me through the Haemophilia Centre, behind reception there was a hatch which looked into the room where they made the treatment up and this sister, haemophilia sister, popped up and just shouted across the room, ‘Mr and Mrs Ward, do you want to know Mark’s HIV result?’ We all sort of looked — well, mum and dad looked at each other, ‘Yeah’. She went, ‘Oh, positive. See you next time.’”
Mark was later told he would probably not live long enough to see out his schooldays.  When he found out he had hep C by looking at his records and queried it, he was told “not to worry about that as he would die of AIDS.”
He then talked about being bullied at school and went on to have very poor health, both as a result of his illnesses and the HIV treatments.  He was lucky to have survived a serious car crash in the 90s, but later was found to have a CMV infection, and suffered with dental problems that resulted in him losing all his teeth.  In 2000, he fell seriously ill again and a lesion on his brain was found to have caused a bleed.He also reported how, unnecessarily, frequent references to his sexuality were made throughout his medical notes over many years.
Throughout all of this, he said the most support and information he got was from the gay community, he did not feel judged, they supported him and as a result he got involved in helping with many charities set up to help those with HIV.
He developed CKD, again a potentially life threatening situation for Mark and for which the treatment was particularly toxic.
Because of his multiple health issues and the fact that the interferon and ribavirin treatment would be tough, he was advised to put off doing that for as long as possible.  In 2006 despite an ultrasound showing liver damage, he was in fact found to have spontaneously cleared his hep C.
He has also been diagnosed with PTSD and Phobic Anxiety Disorder and his partner Richard, described how he gets highly anxious.  He believes that the root of this was that Mark had been made to feel throughout his life that his illness was something to be ashamed of: “It comes from Mark’s early diagnosis of his HIV, the gay plague. You know, we have talked about compassion here often enough. It’s a recurring theme in these sessions as far as I can tell. Medical professionals, who will defend themselves to their dying day, and I expect them to do that and think they are the most compassionate people on Earth, are actually not communicating it to the people sat in front of them. However much they might think they understand, they don’t.”
Richard also described how he was ignored at appointments he attended with Mark and also excluded from any potential financial support from the payment schemes as he it was “for wives and girlfriends only”, although this was later changed.  He said: “Unlike heterosexual couples, we have never been warned of any potential risks to me, nor have I been offered any training to help Mark administer his Factor treatment. We have been treated with contempt and told, ‘This is a family unit’.”
Mark closed with a powerful statement:
“I certainly do not believe I invented being a gay haemophiliac. This reveals how LGBT people with a bleeding disorder were seen in the past. The institutionalised homophobic attitudes, who never even recorded their existence, is as relevant today as it has ever been.  Judging people based solely on others’ beliefs is unacceptable and yet it’s happening all around us on a daily basis within health care. I was effectively abandoned, isolated and seen as a figure of hate by some… by the age of 18 I had a number of gay friends who eventually took me out on the London gay scene, which made me question everything. Since then I have worked at the biggest LGBT nightclub in the UK and, in doing so, unknowingly became part of London’s proud gay history. I have been a volunteer for the West Midlands Lesbian and Gay Switchboard, the Terrence Higgins Trust, and Open Door, a Brighton-based HIV drop-in centre. I proudly represented the haemophiliac community at the unveiling of the AIDS memorial in Brighton and the monument which moves me every time I see it… I have travelled to the other side of the world to support the Australian victims of this same Contaminated Blood Scandal, whose government has shamefully treated their victims in a similar manner to ours, and that’s by ignoring them, hoping they will all die and the problem will go away quickly.
“Sir Brian, if I may be so bold as to offer a couple of recommendations for your consideration.  The NHS is at the heart of this scandal, and I believe it can be our biggest tool in locating more victims. To begin with, the implementation of a more robust reporting requirement for homophobic abuses and a dedicated LGBTQ administrator within PALS set up.  Updated education for patients and staff in hepatitis C clinics, gum clinics, sexual health and HIV centres. The patients already attending these services are asked on their next review if they have ever had a blood transfusion. If the answer is yes, then protocols are put in place to immediately trace the batch numbers and potential other victims, as well as the patient provided with information on how to access the various support schemes.  For newly diagnosed patients, the same course of action, but with counselling made available immediately, along with a national screening programme, educational advertisements on TV, radio and social media, such responses to hate speech, concerning health, disability or sexuality in order to diminish the outdated myths lies surrounding hepatitis C and HIV.” Andre
Her husband, Mario, had Beta Thalassaemia Major, and as a result had to have regular blood transfusions. He was diagnosed in 1991 and they got together in 1993.  Throughout this time he was on and off a number of different interferon treatments, up until 2003 when he finally cleared.
The cumulation of all this, and the later addition of ribavirin affected his mental health greatly and his overall physical health deteriorated.  Andre became essentially his carer.  She did everything she could to support him and keep the family going and to protect the children.
It was heart breaking to hear her describe how she had no support throughout this time.
“It was very, very hard. It was very hard to cope with it. I was there for him. I wanted to help him. I wanted to support him. I wanted to be able to, you know, get rid of this horrendous disease for him, but obviously I couldn’t. I worked very, very hard. Sometimes I would leave one job and go on to another just to try to make ends meet. I had the children who were still little. Luckily I had childcare, because my mother and my mother-in-law both helped with looking after the children when they were younger. However, when Mario was medically retired, he took over picking the children up from school. It was hard, because Mario was so angry. He was always so angry about, you know, what happened to him. He did take it out on me most of the time. He did. And emotionally, you know, I was exhausted. I was getting depressed. I was trying to cope. I was trying to run the household. I was trying to sort my children out. You know, he could be quite abusive. I know that he didn’t mean it. And then there would be times, you know, when we would both be sort of like crying together, you know, trying to sort the situation out together. I would try to reassure him that everything was going to be fine once the disease has gone — oh, there he is. You know, once the disease has gone, everything is going to go back to normal, you know. It was very, very hard. I did find it quite — you know, at the time, I felt like I needed help myself. I would go and lock myself in my bedroom and I’d cry most of the night. I didn’t want to show him how upset I was.
“I used to spend a lot of time on my own crying. I never wanted to show the children. I wanted to show them that I was strong and I could deal with this. I needed Mario — he was the one actually going through what he was going through, so I didn’t have a right to complain. That’s how I felt, you know. This wasn’t about me. This was about Mario. I don’t think I had the right to complain about myself or anything like that.”
Despite clearing his hep C, Mario had developed cirrhosis and this led to him later developing liver cancer in 2016. Despite an initially successful liver resection to deal with this, it came back and after being told he had just six months to live, Andre described how he “just gave up, and died three weeks later”.
She talked about the devastating impact this had had on her and all the family and how Mario had been shamed, both by having thalassaemia and also by having hepatitis C:
“For me, one of the saddest things is that this all [the announcement of the Infected Blood Inquiry] came about one week after Mario died. Mario was so upset about the hepatitis and that he got hepatitis C from the NHS and through blood, and he wasn’t there to find out that this has actually come about now. You know, I really wanted to tell him. It was just something that I felt he needed to know. I don’t know. I was just so upset that he wasn’t around, because he was so troubled by it and, you know, the fact that this tainted blood was given knowingly, knowingly. It wasn’t an accident. You know, they knew about it. I just think that, you know, for Mario, I don’t know whether it would have been a relief for him to know that somebody is actually going to do something about it or — I don’t know. But I just felt like he deserved to know.”