A mum who was given hepatitis C through a tainted blood transfusion at Newcastle General Hospital has spoken out about her desire "for people to be held accountable".
The woman - who remains anonymous but is known as Sarah - told ChronicleLive how, like other victims of the contaminated blood scandal, the consequences of being given a lethal virus by the NHS had reverberated throughout her life.
Sarah has had a series of different treatments for hep C, she described some of the earliest as "deeply unpleasant", and she's been living with poor health for more than 25 years.
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One of thousands of people to have been given tainted blood in NHS treatment, she explained how her infection had led to stigma, affected her family and friends, and left her with mental health difficulties.
Sarah has spoken out again as the Infected Blood Inquiry - led by Sir Brian Langstaff and investigating the circumstances around what's been called the NHS's "biggest ever treatment disaster" - is hearing evidence from medics who were involved in blood transfusion policy at hospitals around the UK.
Sarah said the first she was told about receiving a blood transfusion was when she woke up after her 1990 spinal operation - and she didn't find out she had hep C until receiving an otherwise-innocuous letter through the post in 1996.
She said: "It was quite a severe issue, and I was taken into the general and was there about three weeks. They decided to operate and to carry out a spinal fusion operation. I remember them telling me about the risk of paralysis - but no-one thought to mention a transfusion, nobody asked me about it.
"The first thing I realised about that was what my sister brought my eldest child in to see me in hospital - and there was a blood bag hanging up."
In the early 2000s, Sarah says she went to see the Freeman Hospital's Prof Chris Day - now Vice-Chancellor of Newcastle University - and she said he "went through the details of the operation and couldn't understand why I was given blood".
"I didn't need a transfusion. That's what sticks with me, it was something I didn't need. They gave me blood without my consent and without me needing it."
Sarah only found out she had been exposed to viruses like hep C years later, when she received the letter - and said: "I had been feeling unwell for a while but I'd had some difficult personal circumstances and stress and put it down to that. I received this letter, it had just come through the post.
"I had never even thought again about the blood transfusion - it never even entered my mind."
The woman also spoke about the decades of trauma she had faced dealing with illness and stigma - and how her diagnosis had cost her jobs.
It was still something to be kept quiet", she said. "It's had many, many side effects. For example I developed glaucoma at a young age."
She has also undergone numerous devastating treatments for her infection - with the side-effects of some of the powerful drugs she has been given over the years hitting her mental and physical health hard.
"You always have to explain things," she added. "When I would go to the dentist I'd have to be last in the day so they could do a deep clean afterwards.
"It's impacted on my health in various ways - causing all sorts of conditions."
Looking forward to the inquiry's conclusion, and the ongoing review of a "compensation framework", Sarah explained what she felt victims like her needed.
"In the last few years I've obviously been following and watching the inquiry," she said. "And to hear how people lost homes, how people like me haven't been able to work or how partners - like my husband - have at times had to give up work - things like that need to be recognised.
"You can't put a price on a person's life though. They have to stand up and recognise their mistakes. People should be held accountable but I don't think they will be.
"The people I've spoken to want a stable income - and I also don't want people to lose out by getting paid. So many people have died and are still dying because of something that simply shouldn't have happened."
Last week Dr Jonathan Wallis - a haematologist at the Freeman Hospital - gave evidence to the inquiry referring to blood transfusion practice in Newcastle.
Sarah's operation took place at the General before the hospitals were part of the same organisation.
Dr Wallis told the inquiry that while in his experience patients would usually have been aware they might undergo a transfusion: "I don't know that they were told as a routine whether or not during the operation they had received transfusion."
Dr Wallis - who went on to chair the National Blood Transfusion Committee before retiring in 2019 - added that in the 1990s medics brought in numerous new audit procedures to keep track of blood transfusions.
Speaking of the introduction of transfusion nurse specialists at the Freeman, he said: "We became more aware of the need to monitor what we were doing. Medicine changed from being top-down to more of a team sport."
Dr Wallis also told the inquiry how the attitudes towards the use of blood transfusions changed during his career, and that by the time he was a senior consultant "there was general feeling that we shouldn't be giving blood unless there was good reason to do so".
Speaking about how, as late as 2000, some patients were receiving "unnecessary" transfusions, he added: "We were aware from our audits that some patients were being transfused outside our guidelines."
Sir Robert Francis QC was appointed in May 2021 to carry out a study into compensation for victims of the contaminated blood scandal by the Cabinet Office. He is expected to report his findings before the end of the ongoing public inquiry.
The Infected Blood Inquiry continues and is expected to finish in 2022 - with a final report likely in 2023.
