Day 16 of the Infected Blood Inquiry

Friday 7th June was the final evidence hearing in London until October but the Inquiry will continue to go around the UK to ensure people can access the hearings more locally if they want to.

 

Mr L

He had been treated for serious pneumonia, which led to a variety of complications including septicemia and dialysis when he was just 19 years old.He ended up being put into an induced coma and had a partial lung removal.

At the time his condition was so serious he believed he was going to die, indeed he told the Inquiry he had been read his last rites in hospital and the whole experience left him “physically and mentally scarred”. 

It wasn’t until nine years later that he was diagnosed with hepatitis C after a blood test conducted as a result of a clinical trial for high blood pressure he was taking part in. He described how being diagnosed with the disease had made him feel “poisonous” due to his fear of infecting others and he had suffered with recurrent nightmares about his fear of the virus. 

In an effort to get rid of the virus he later went through a course of standard interferon – something he had to wait for due to funding issues at the time. He described how terrible the side effects of the treatment were, his back seized up in pain, he suffered with insomnia, nausea and vomiting. The mood swings commonly associated with the treatment had also made him a “monster”.

After completing treatment and enduring all this he was devastated to find out that he still had the virus. 

Whilst a second course of treatment, which he also had to wait for due to funding issues, did clear the virus, they also brought another round of debilitating side effects.   

He noted how difficult it had been to get financial support through the Skipton Fund and how he felt the waiver signed in return for financial support had been a “one-off payment to shut me up” and likened it to a “gagging order”. 

Though he found his medical records (a lever arch file packed full of paperwork which he showed to those attending the hearing) that related to the treatment and management of his pneumonia, none of it referred to the blood he had received on multiple occasions during this time.This he rightly described as incredible, especially as when someone is in intensive care, every single thing that happens to them is logged and recorded.

He also spoke to his consultant and GP to see if they could locate anything and neither of them could, but with his wife’s help he was able to find them 6 months later, including the details relating to the many blood transfusions he had.

As he was concerned about others who may have also been infected by the same batches of blood he talked to other medical practitioners but found they were all “dismissive” about conducting an extensive lookback exercise to find the donor who had infected him, despite that it may have helped to find others who might have been infected.  His nurse simply said “no we’re not going to do that.” 

He finished by expressing his gratitude for the Inquiry and that everyone was “finally invested” in the issue of infected blood and saying that although it had changed the course of his life it had made “me who I am”.

 

Maria 

Maria has had beta thalassemia major since birth, a blood disorder which requires regular blood transfusions to keep her alive. She was diagnosed with hepatitis C in 1990 and doctors believed the only way she could have caught the virus would have been through these transfusions. 

Like many witnesses, Maria described how the nature and consequences of hepatitis C were poorly explained to her when she was diagnosed and that there was a general lack of information.  She said her consultant was flippant and it wasn’t conveyed to her how serious it might be.

Maria went through five unsuccessful courses of interferon to try and eliminate the hepatitis C infection. She described how she would just want “lie in my bed and let time go by” because the side-effects were so debilitating. She eventually cleared the virus in 2016 with a course of new DAA (direct acting antiviral) tablets. 

Maria described the stigma she felt with having hepatitis C and how she had felt unable to tell her work about her diagnosis. The fear of infecting others had been pervasive, particularly because as a diabetic she would often bleed from pricks she made to test her blood sugar levels.  There was already a “shame” attached to her thalassemia diagnosis as well as her HCV status in the Greek Orthodox community. 

Maria felt that this had been exacerbated by the way she had been treated at one hospital in which she was under the care of the infectious diseases department (rather than more typically gastroenterology) and documents relating to her care had been marked with yellow labels saying “infectious”.  

She felt she had to go “begging” to the Skipton Fund and later the Caxton Foundation to get financial support and that it was a difficult process and not at all easy to understand what was available.  

Although she has cleared her hep C, she felt strongly, as many of us often do, that she should be continue to be followed up afterwards by her consultant, rather than discharged. This is because she still feared what liver damage she had and was concerned that there may be other viruses that emerge as a result of her transfusions.

 

Graham

Graham discovered he was a mild haemophiliac as the result of a playground injury to his knee when he was in primary school and he was treated using infected blood products. It was only years later in 1995 that he was diagnosed with hepatitis C. 

Graham described how his “whole world fell apart” with the diagnosis but there was still a lack of clear information and he was told little more than that the disease could lead to liver cancer. He talked of his fear of infecting others and how the disease had contributed to the breakdown of his marriage and affected his mental health. The stigma was so strong he had avoided telling people around him about the disease. His wife felt unable to disclose it to her family also.

He said he felt like a "leper", "dirty" "tarnished", "on the fringe of society" and described how he would disinfect the sink with bleach after using it for fear of infecting family members through blood from shaving or brushing his teeth.

It was heart breaking to hear how even his daughter was encouraged not “to go near Daddy” such was the fear about risk of transmission.

Despite later clearing the virus with the help of new DAA treatments he described the two interferon treatments he went through previously as a “living hell” and how they had affected his mental and physical health. 

He also described the EIBSS scheme as making him “feel like a charity case”, that it was laborious and long winded with “hoops to go through and hurdles to go over”, that you were made to feel like you had a “cap in hand”.

Like many people affected by hepatitis C, he found linking in with various support and campaign groups very empowering as it allowed him to get some perspective by meeting others who had been affected. He said how fired up he felt after going to a demonstration in Westminster and they were bonded together as a band of brothers and sisters.

Graham finished his testimony by noting that 107 people affected by contaminated blood have died since the inquiry was first called for in 2017, making the need for justice and answers even more pressing. 

 

Further Support

For any further information or assistance relating to the Infected Blood Inquiry, please do not hesitate to call The Hepatitis C Trust’s confidential helpline on: 020 7089 6221 or by e-mail. Everyone on the helpline has had hepatitis C themselves and can provide a wide range of information on all aspects of living with or being affected by hepatitis C. We can also provide support and information around providing evidence to the Inquiry team and guidance on making claims to the various infected blood support schemes people are eligible for.

You can watch the hearings and find further information can be found on the Infected Blood Inquiry website.