'I want justice': contaminated blood victims speak out

Maria Fletcher and Nicholas Sainsbury describe how the NHS scandal has affected them

The long-awaited inquiry into the contaminated blood scandal is to begin on Tuesday. Below, two victims describe what happened to them.

Maria Fletcher

Fletcher has learned to live with the discomfort and medical intervention caused by beta thalassemia, the blood disorder with which she was born. She requires transfusions every three weeks to top up the iron-containing protein in the red blood cells that carry oxygen around her body.

She was diagnosed with the condition aged one and endured regular hospital visits during her school years. After leaving education, she obtained a traineeship with a cosmetics company.

At 21, however, she started to feel extremely fatigued. After a series of tests she was informed she had contracted hepatitis C from the blood she had received.

“It wasn’t screened properly,” she says. “It was from donors living in England. I haven’t lived like a normal person and a lot of that has been due to hepatitis C. I kept working for a bit, but there were a lot of side-effects mentally and physically.

“My white cell count would drop and I had [temperature fluctuations] and shivers. I had a really good job and had to give it up. You couldn’t continue a normal life at home and work.”

Fletcher has not worked since the 90s. Her health has deteriorated and she is now an insulin-dependent diabetic with heart problems caused, she believes, by the hepatitis infection. “Thalassemia was manageable, but when hepatitis C came along it wasn’t. It was hard to get treatment. When I moved to Leicester I had to push to get the medication.”

She is married and does not have children. “[My health problems] made it more difficult for me to fall pregnant and to get a mortgage,” she says. Now 50, Fletcher has cirrhosis of the liver and has to endure painful biopsies.

The stigma of hepatitis C has been difficult to bear. “You are always cautious and scared about who you can tell,” she says. “Many of my friends have passed away from hep C. Everyone who had a blood transfusion at that time should be checked. I want justice; I want the truth. They are trying to sweep this under the carpet.”

Fletcher will give her testimony to the inquiry in June. “I have nothing to hide now. My family and friends know,” she says.

Nick Sainsbury, from Hull in east Yorkshire, who received contaminated blood as a child.
Nick Sainsbury, from Hull in east Yorkshire, who received contaminated blood as a child. Photograph: Sean Spencer/Hull News and Pictures

Nicholas Sainsbury

Sainsbury was diagnosed at birth with haemophilia, an inherited condition that prevents blood from clotting. He was sent to a specialist boarding school, Treloar in Hampshire, which provided medical treatment for pupils on site.

During his time there, in the 70s, he was given factor 8, a protein derived from blood donations that helps clotting. Only later did he realise it was infected.

“We lost so many people,” Sainsbury says. “Out of the 55 pupils who were there in my first year, more than 40 have died. No one died when I was there – it started to happen from about 1984-85.”

After school, Sainsbury worked as a civil servant and then at the Land Registry until his mid-30s, when he became ill from multiple viral infections. He discovered he had contracted HIV and hepatitis C from the transfusions and eventually had to give up his job: “It was just too much. I was going to work bent double on crutches,” he says.

He has had both knee joints and an ankle joint replaced. “Learning how to deal with haemophilia was very difficult, and then to have two more extra blows on top of that ... There’s a lot of anger because people feel health warnings were ignored.

“A lot of of the products were imported from the US where blood donation was paid. It was harvested from drug users, people on skid row and from prisoners.”

Now 55 and living near Hull, Sainsbury has sent a witness statement to the infected blood inquiry. “In the early days, the fear of Aids swept the whole country and was whipped up by the media,” he says.

“If you knew someone who had haemophilia, there was a chance of them being infected. I remember the tombstone advert and the press referred to it as a ticking timebomb. We felt like sitting targets.”

• This article was amended on 2 May 2019 to remove a reference in the opening paragraph that implied the scandal affected only haemophiliacs.

Contributor

As told to Owen Bowcott

The GuardianTramp

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