When the long-running public inquiry into the infected blood scandal delivers its final report on 20 May I will take a few minutes to remember a friend from my primary school days.
Allen Titley
I was a pupil at Benton Park in Newcastle in1970 when a new kid arrived at the school who immediately stood out from the crowd. Allen Titley wore protective pads on his knees and elbows. There were jokes about him looking like a robot.
As we happened to live at either end of the same street, he told me on our long walks home together from school that they were designed to stop his joints from being scratched. As a nine-year-old, I struggled to get my head around Allen’s condition as a haemophiliac. All I knew was that if he got a bruise or a cut, he was in serious trouble.
Before coming to Benton Park, he’d spent months in hospital after an incident at his previous school, Cragside Primary when he was hit on the knee by a football and had suffered a haemorrhage.
I didn’t know it at the time but apparently Cragside refused to have him back because of the fear of further injuries. The education authority suggested he should attend a school for disabled children but his family wanted him to remain in a mainstream school.
Benton Park and Manor Park schools
Benton Park was the next nearest and he was placed in the school’s specialist deaf unit even though he didn’t have a hearing problem. With hindsight, it was almost certainly done to help him avoid the rough and tumble of being in a normal class.
Later, his younger sister Elizabeth, also moved to Benton Park and into my class. I remember being struck by her vivid red hair – the same as her brother.
Like myself, Allen later moved up to Manor Park comprehensive school, but I have few memories of him there while Elizabeth went to Heaton along with her younger sister. From there, we went our separate ways.
Six decades later I was reminded about my almost forgotten flame-haired friend and his distinctive knee pads when reading about the latest revelations from the infected blood inquiry. A quick Google search stopped me in my tracks.
Written statement by Allen’s sister
I was looking at a written statement by Elizabeth, dated May 2022, detailing Allen’s life until his death in 1982, aged 22. This was a witness statement for the Infected Blood inquiry.
“I do not wish to be anonymous as I wish for my family’s story to be known in full,” she states in an opening paragraph. I’m glad to be able to help her fulfil that wish.
Elizabeth goes on to chart an incredibly moving history of her brother’s diagnosis at the age of three months, the severity of his condition (he couldn’t throw a dart with his right arm without having a bleed in his elbow), the impact on her family and the pivotal moment in 1971 or 1972 when her parents were told he was going to be one of the first in the North East to be given a new drug to treat his haemophilia.
New treatment
Until then, Allen would attend the Royal Victoria Hospital twice a month to have injections of cryoprecipitate in what was then a brand new haemophilia centre led by consultant Dr Peter Jones, who would later give evidence in the inquiry.
Elizabeth said:
“My father clearly recollects that Peter Jones told him that there was a limited supply of cryoprecipitate and so the RVI and other hospitals were looking to source alternative drugs to treat haemophilia.
“Peter Jones said that hemofil was a fantastic new drug and that Allen would be one of the first people to get to use it. The situation as presented to my parents was that if Allen didn’t accept the use of hemofil there would be nothing for him to use when he needed treatment.
“My parents knew that Allen’s pain was so excruciating when he sustained a bleed that he would have to have something to clot his blood and stop it pouring into his joints and forcing them apart so, for them, the decision was one of Hobson’s Choice.
“If there was nothing else available then they would have to consent to Allen using hemofil. At no point were my parents given the option of Allen remaining on cryoprecipitate.
“My father is clear that he remembers reading material from the Haemophilia Society, warning that hemofil was not safe because the blood it was being made from was likely to be contaminated.
“My father put this to Peter Jones who told him that the product was heated to 60 degrees to kill off any infections and was therefore safe…”
Hepatitis and possibly HIV
In her statement, Elizabeth says she believes Allen contracted hepatitis C and potentially HIV during the decade he was on hemofil, which could be self-administered at home by patients instead of enduring lengthy hospital visits.
His subsequent increasingly frequent absences from school because of regular bleeds probably explains my lack of memory of him at Manor Park, By the age of 19, she recalls him starting to have an unprecedented number of bleeds which could not be put down to any injuries.
Elizabeth’s account of her brother’s death in hospital after a serious deterioration in his condition is both unflinching and harrowing. She mentions that Dr Jones, who remained Allen’s consultant, diagnosed hepatitis B shortly before his death.
She said:
“After the post mortem, Peter Jones visited my parents at their home. I was not present at the time, but Allyson (her sister) was, as she was home from university.
“Jones told my parents that there was so much good intestine left in Allen’s body that there was a possibility that they could have saved him.”
Cause of death
The cause of Allen’s death was officially recorded as inflammation of the abdomen as well as haemophilia, but Elizabeth said her mother always thought it was a cover up. She also thinks her mother deliberately burned a post-mortem document recording a haemorrhage under the liver because it was too distressing to read. She now believes it would have confirmed hepatitis C.
“I am confident now that had Allen not died in November 1982, he would have been diagnosed in 1983 with hepatitis C, HIV or AIDS.
“The two weeks leading up to Allen’s death were horrendous to witness. You could tell that he was in so much pain and so uncomfortable. He was jaundiced too.
“He struggled to do basic things like put on slippers or dress himself because the swelling was so large. It was a horrible way to die.
“A long time before Allen was hospitalised you could tell he was unwell and struggling. The pain in his ankles and feet was more than he could bear. He was tired all the time.
“My family and I have always wondered if he had HIV and whether this was what was causing his fatigue.“
No answers
Elizabeth continued:
“As a family we have never been given answers, and will never get answers, as to what Allen contracted and what actually caused his death.
“He was given hemofil regularly from the age of 12 and at least two, and often three times a month. In the last three years of his life he had a minimum of 21 doses in 1981 and 50 doses in the first six months of 1982.
“There is no way he wasn’t infected with Hepatitis C or AIDS.”
The report from the Infected Blood Inquiry is due to be published on 20 May.
