This week the Inquiry returns to London after hearings in Belfast.
Oral evidence of Shelagh O’Shea and Luke O’Shea Phillips
Both Shelagh and her son Luke, a 37 year old haemophiliac, gave evidence about Luke’s haemophilia and his subsequent infection with hepatitis C. Luke was first treated with Factor VIII blood products following a fall when he was three years old.
The Inquiry was shown a letter sent to Luke’s consultant at the hospital from June 1985 which said he was to be tested for the presence of viruses and it was hoped “he would be suitable for the heat-treated trial”. The letter was copied to a pharmaceutical firm, Alpha Therapeutics.
Shelagh told the Inquiry she was never told her son might have been exposed to infection through Factor VIII products or that he was being prepared for a medical trial. The NHS letter referred to him as a “virgin haemophiliac”.
Shelagh she did not discover that Luke was infected with hepatitis C until she received a hospital letter in 1997. The Inquiry was shown NHS documents from 1993 that confirmed that Luke was infected at that time but saying: “Patient and family unaware at present.”
Luke described his reluctance to begin Interferon treatment in his late teens as there was only a small chance of it clearing his infection.
Luke felt that he had had 60% of himself taken away due to being infected. His infection massively affected his teenage years, his education, job prospects and relationship with his family.
Oral evidence of Gillian Kenny
Gillian spoke about her late father John Kenny. John had served in the British Army and the United Nations in Cyprus and was abroad for work frequently in Saudi Arabia. He was infected with hepatitis C as a result of a blood transfusion which he received whilst undergoing an operation for a degenerative bone in his neck in 1979.
After the operation and transfusion Gillian said her father was not quite himself. John was frequently exhausted which he blamed at first on jet lag. He also suffered bloating, stomach pain, back pain and felt cold all the time. His worsening condition meant that he had to permanently return home from Saudi Arabia where he was working.
In 1997 on his return to the UK, John underwent a series of tests and was eventually informed by his GP that he had hepatitis C. This developed into cirrhosis and eventually into cancer in 2009.
He was later treated with Interferon and Ribavirin but stopped as the side effects were so severe. John was later told that he was too old for a liver transplant and that only palliative care was available to him. He sadly died in 2010.
Oral evidence of Ms K
Ms K gave evidence about her late father who was a severe haemophiliac. Ms K remembered her father having to receive Factor VIII on numerous occasions. She would have to administer Factor VIII to her father at a young age.
Ms K’s father was a blood donor and was unware he had been tested for HIV by the blood service. When the media started to report on AIDS and the risk to haemophiliacs, he asked the hospital to test him. He was then informed that he had been tested and found to be HIV positive two years earlier but hadn’t been informed of the result.
Ms K recalls being forced to have a test for HIV at 14 during which she had to be restrained. Ms K told the Inquiry how her father always tried to be positive and put on a brave face despite getting sicker and sicker and enduring poor treatment from hospital staff and people in his community. Ms K told the Inquiry how she was excluded from lessons and missed a lot of her education whilst the school decided whether or not it was safe to teach her.
Ms K’s father sadly died from his infection in 1988 and her mother took her own life 9 and a half years later.