A woman who raised the alarm about giving contaminated blood products to her haemophiliac son in an NHS hospital was labelled a “neurotic mother” in his medical notes, the infected blood inquiry has heard.

Della Ryness-Hirsch wrote letters to the Guardian, ministers and senior doctors in her battle to save the life of her son, Nicholas Hirsch, and prevent him from contracting HIV.

She succeeded in stopping him receiving US blood treatments but he eventually died of hepatitis C, which is thought to have been passed to him through Factor VIII blood concentrates produced in the UK.

Giving evidence in the second week of the inquiry at Fleetbank House, in central London, Ryness-Hirsch, now 75, whose sister is the former Liberal Democrat MP Lynne Featherstone, said there had been no history of haemophilia in her or her husband’s family. Nick was born in 1976 and they found out he had the condition when they found him lying in a pool of blood after he was circumcised at the age of seven weeks. He was treated at Great Ormond Street hospital.

She recalled one early accident when a deck chair collapsed in their back garden and part of it hit Nick’s head. He was rushed to hospital and given cryoprecipitate to stop the bleeding. “Nick had been screaming hysterically but when [he came back] we laid him down next [to his twin brother] on a quilt,” Ryness-Hirsch said. “They just started laughing and we thought we could cope with this.”

Q&A What is the NHS infected blood scandal? Show Hide The infected blood inquiry will investigate how thousands of people with the blood-clotting disorder haemophilia were given blood products by the NHS which were contaminated with the HIV virus and hepatitis C. At least 4,689 British haemophiliacs are thought to have been treated with infected blood in the 1970s and 80s. So far, half have died. The inquiry will try to figure out the exact number of people who have been infected, examine the impact the infection had on people’s lives, investigate whether there was any attempts to conceal details of what happened, and identify any individual responsibilities as well as systemic failures.



In 1978 a close friend who lived in San Fransisco rang her to say there was “something really weird going on” about the way infected blood in America was paid for and being used for medical treatments. “We shared this information with doctors at Great Ormond Street hospital and said we didn’t want Nick receiving anything from American products,” she said.

In 1980 on a visit to the hospital they were told Nick had to receive a new treatment with American blood products. “I said you can’t give it to him. I had a huge shouting match there. I kicked up bloody murder,” Ryness-Hirsch said. Eventually the hospital agreed to give him UK-made Factor VIII blood products.

In 1985 she read a Guardian leader article about Aids, urging the Department of Health to introduce heat treatment for all Factor VIII blood products to prevent infections from being transferred. “That worried me,” she told the inquiry. “We were absolutely besides ourselves.”

She wrote a letter to the paper warning about the dangers, and a few days later she received a call from a Prof Hardisty at Great Ormond Street, who invited her and her husband, Dan, in for a talk. “He told us all the children had been tested for viruses and Nick was the only one who did not have HIV. I didn’t even know that Nick had been tested. It was completely and utterly outrageous.

“Then they said they didn’t have enough [British-made products],” she said, so they transferred his treatment to the Royal Free hospital in north London, which had enough blood products made by a firm in Elstree.

Great Ormond Street hospital refused to release Nick’s medical notes, the inquiry was told. “Two or three weeks later I got a phone call from a nurse who said she had taken Nicholas’s notes and if I met her in the street she would hand them over.”

Among the notes, Ryness-Hirsch said, was one from the day she had “kicked up such a fuss” about medics trying to give him American blood products. “Right across it was written ‘neurotic mother’. That summed up the way we were treated by the medical profession.”

In July 1990, Ryness-Hirsch was informed that Nick had tested positive for hepatitis C. It later emerged there had been a month’s delay in telling the family, and their GP had known before them.

Nick’s condition began to deteriorate. He was tired and had depression. He was put on a drug test with Interferon but it was debilitating and did not clear the virus.

Ryness-Hirsch tried to get her son on more successful recombinant product therapy but it was only being given to young patients. “I wrote to Alan Milburn, then health secretary [but] you had to be under 18. Nick was about two months older. I begged him in that letter to let him have [the recombinant] drugs.” The request was refused.

“Nick was so frightened and in those two months they exposed him to the CJD [virus],” Ryness-Hirsch said.” I just felt so passionately, not only because he was my son. There were tons of people it was happening to. There were other families suffering like us.”

Nicholas Hirsch worked as a guitarist and ran a recording studio. He had a partner and his daughter was 10 months old when he died at at the age of 35 after receiving another experimental drug, Telaprevir, at the Royal London hospital.

Ryness-Hirsch said she was appalled that on his final day she was locked out of the intensive care department and not allowed to see him. “It was just a long, long history of deceit and unkindness,” she said.

Paying tribute to her son, she told the inquiry: “He was funny and talented and loving. We miss the hell out of him.”