Hull man feels 'lied to' by NHS after hepatitis C infection and another witness says scandal goes 'higher up'

A Hull man has told how he felt "lied to" by the health service he was brought up to trust after finding out years later that blood transfusions he needed as a child may have infected him with hepatitis C.

Credit: NHS.
Credit: NHS.

Leeds man tells Infected Blood Inquiry of wife's death after hospital blood transfusionsDarren Rawson, who admits he now fears cuddling his own children, discovered he had the virus as an adult after the treatment at Hull Royal Infirmary when he was five.

The national Infected Blood Inquiry today heard how an NHS trust has acknowledged the transfusions could have infected Mr Rawson, who is now 36.

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Mr Rawson said: "I felt dirty. I was getting in the bath every hour or so. I felt disgusted in myself."

In separate evidence earlier in the day, a haemophiliac who contracted HIV when he was a teenager said he was "absolutely stunned" when he found out doctors had kept his infection a secret when he was young.

The inquiry at the Crowne Plaza hotel in Leeds, where regional hearings are taking place, heard that Mr Rawson was given a tonsillectomy in 1988.

Complications led to a haemorrhage and the need for blood transfusions.

But he only later discovered that he had hepatitis C and tested positive for the virus in 2005 after suffering from heavy bleeding when his nose suddenly "burst".

And it was only around 2009 or 2010 that a newspaper article his mother read made the family consider that the transfusions may have played a part in him contracting the virus.

"It started to spring to mind that this is where the hepatitis could have come from," he said. "We had a chat and started to look into it a bit more."

He added: "I was angry. I was really angry about it because obviously, [of what] they had put into me."

Mr Rawson sought information from health authorities about the transfusions in 2015, and a letter from Hull and East Yorkshire Hospitals NHS Trust showed at the hearing stated that the Blood Transfusion Service's records did not go back far enough to clarify the situation.

But the letter said the trust acknowledged the transfusions may have infected him.

Mr Rawson agreed with junior counsel to the inquiry, Sarah Fraser Butlin, that he still wanted "definitive confirmation" of that.

He said: "How can it not be traced? This is what I need to know. It's ridiculous."

Mr Rawson also agreed with a statement read out by Ms Fraser Butlin that he felt "angry at the public health system that you had been brought up to respect had let you down".

Reading a written statement by him, she said: "That trust has gone and I've been left feeling totally vulnerable."

It continued that Mr Rawson, a former Butlins Redcoat, was having to "seek help from the system that has hurt me".

Following the birth of his two children, Mr Rawson felt ready to accept treatment after 2013 and was cleared of the virus.

But he told the inquiry the side-effects of the Harvoni treatment included pneumonia, worsened mental health, extreme tiredness, unpredictable sleep patterns, "brain fog", joint pain and itchiness.

The father-of-two has also applied for payments from a fund set up to help those affected by the scandal, on the grounds of his damaged mental health.

However he told the inquiry he has twice been denied funding so far over a lack of evidence.

He said: "Every time you apply for things off them, they say, 'Go see your specialist'.

"When you go see them it could take months to get a letter off them. It's just like a waiting game."

He described his dealings with the Infected Blood Support Scheme as a "nightmare".

Mr Rawson also told how the hepatitis C diagnosis affected his relationships and work opportunities, and of how he wanted to keep it a secret because of fears over an online backlash.

Ms Fraser Butlin said that in his statement, Mr Rawson revealed he was "scared even of kissing and cuddling" his children despite the virus being cleared.

He added: "If I have a bleed or anything, I still think I've got it [hepatitis C]. I don't want to be too close near them. That's my biggest fear."

As his evidence concluded, inquiry chairman Sir Brian Langstaff asked Mr Rawson what in particular had made him lose trust in the health service.

He replied: "They never told me that about the blood transfusion. It's just that it's been going on and they sort of lied to me about it, kind of thing.

"When they put that blood into me, they never told me."

Earlier on Martin Beard, 50, told the inquiry how it was not until 2006 that he first saw a 1985 letter between hospitals which said: "We note that he is HTLV 3 antibody positive (HIV), but is not aware of this and that you do not wish this to be divulged to him. We shall make every effort to comply with your wishes."

Asked how he felt when he first saw this letter more than 20 years later, he told the inquiry: "Stunned, absolutely stunned.

"Total, blatant disregard for me."

Mr Beard, from Burton-on-Trent, Staffordshire, said it appeared that he had been tested for HIV without his knowledge in 1983, when he was 14.

He said he had been treated at Birmingham Children's Hospital for years "but they never had the decency to tell me about this".

Mr Beard told the hearing, he was working as a sheet metal worker when he left school in his mid-teens.

He said: "What absolutely staggered me was the fact that they were prepared to put other people at risk - the people I was working with."

Mr Beard described the blunt manner in which he did find out about his HIV infection in 1986, after his care had been transferred to north Staffordshire.

He recalled how he was walking into a doctor's room from a waiting area and was given the news without any introduction or welcome.

Mr Beard told the inquiry: "He doesn't say anything. All he says is, 'Hello, I see you're HIV positive'."

He said: "I just batted it away and said, 'Oh well, that's life' because I didn't really understand the full implications of it.

"And he looks at me and says, 'Well, that's your life for the next two years'.

"I said, 'What do you mean by that' and he says, 'You've got about two years to live'."

Mr Beard said: "That's when it hit me and I can't really remember the rest of the conversation I had with that man that day."

He said: "He didn't whisper it. He said it in a normal voice. The door was open. The normal public were sat in the waiting room."

Mr Beard explained some of the prejudice he faced over the years, including an incident in a Derbyshire pub when he was told "you get out" and was left to feel "numb, empty, worthless".

He also recalled how he lost a job after a manager told him: "The workforce is not happy. Either you go or they go. And I was forced out."

Concluding his evidence, Mr Beard told the inquiry: "People are accountable.

"I am not going to sit here and bash doctors, because I don't believe that all doctors go into the profession to hurt people.

"They make mistakes along the way.

"They are human beings.

"They lose track sometimes of what they're there for. But this goes higher up than that.

"There are MPs that are accountable and they should be made to answer and I believe now is the time for justice."