8th May – London hearings
Today we attended the morning session where we heard evidence which was brave, compelling and harrowing. Both evidence sessions were very different, Caroline who was infected after September 1991 when blood should have been screened and Stephen, a haemophiliac who shared his story, including his childhood at Treloar School.
CarolineIn 1992 Caroline received her first transfusion when she was pregnant as she was suffering from pregnancy-related anaemia. Just after this she was diagnosed with Hodgkins disease and as a result she received two subsequent transfusions in May and July of 1993.
In 1993 she was screened ahead of a bone marrow treatment and it was at this point that she discovered that she had hepatitis C.
Caroline, had a particularly difficult time with chemotherapy, the side effects were debilitating and she became jaundiced. She initially cleared the cancer, only for it to return in 1998.
In 2000 she began to suffer severe symptoms of hepatitis C, including extreme fatigue, long term flu symptoms, intolerance to foods, brain fog and also fibromyalgia. She tried interferon treatment but it had such a severe impact that she had to stop. Later, she was placed on trial for new DAA treatments but first had the placebo before she was given the actual drug which cleared the virus.
All of this had a devastating impact not just on her, but also her family and her ability to care for her children. During this time she applied to the Skipton Fund for financial support but was rejected three times because her transfusions were outside of the NHS cut off point in 1991.
Over several years she garnered evidence including statements from three consultants/doctors who all wrote statements confirming that she was infected through blood transfusions. Alongside this, she also got in contact with a Blood Co-ordinator who confirmed that the blood donors had been traced and none had hepatitis C. But she continued to investigate the blood and found the batch numbers of the blood that had been examined.
The outcome of this was shocking as she found many errors in the batch numbers – for example, with the first four batches, which were all given in one transfusion on 5th May 1993, the zeros had all been transcribed as 2s. There were also errors in other numbers.
She continues to fight for answers and is currently waiting for further outcomes from her investigations. Her evidence was compelling… how can there simply be a cut-off date, what about blood that may have been frozen, what about a donor who had only recently caught hepatitis C, it can take up to six months for the virus to show.
At The Hepatitis C Trust we have over many years had calls from people who believe their hep C was a result of transfusions after 1991.
Recently these calls are increasing – we very much hope this issue will now be explored thoroughly.
StephenStephen was born with severe haemophilia B. At the age of 6, he was first treated with Factor 9 concentrate. At this time he was put on home treatment and received injections from either his mother or GP. He experienced regular bleeding episodes which had a significant impact on his schooling, so because of this his parents investigated and found Treloar School; a school that specialised in children who had various disabilities including haemophilia.
At the age of 8 in 1976, he joined the school where there were 89 other children who also had haemophilia. With treatment readily available he felt at the time it was the best place to be.
As he talked about his school days, the unity and friendship he found, he vividly outlined a picture of strong bonds, a family group of children who became very close. He also described the other side of his life, the change in treatment, the needles, the products labelled for one boy but then given to another. The medical room with eight tables which at one point he described as a cattle market, with so many boys going through to receive doses of these products.
At no point over the years did anyone ever say that any of these children were at any risk of anything in receiving these products.
By the age of 15 years everything changed. The casual approach previously known in the medical room changed, everything became stricter and medical staff always had to be present and he remembered his blood being taken frequently for testing.
The following year Stephen recalled AIDS becoming associated with haemophilia – it’s hard to grasp how frightened and scared all the boys must have been. He talked about how his friends were starting to get ill with things that were nothing to do with haemophilia and were so severe, that death as a result seemed obvious. At this time he and his friends made a pact that whoever survived would fight for the truth and get to the bottom of what was happening.
He knew as he left school that everything had changed. As an adult he tried to find his medical notes from Treloar School. At first he was told that all had been destroyed, but later he found that some notes had survived including copies of blood test results taken in 1979 which stated that he was a “hepatitis risk”.
In 1991 he was actually told that he had hepatitis C whilst undergoing a normal screening appointment.
At no point during his time at Treloar was Stephen or his parents told that he was being tested for HIV or hepatitis C and, of his particular group of 20 friends there, Stephen is the only survivor.
You can view Caroline and Stephen’s stories here www.youtube.com/watch?v=UU8jlWF8FoI.