6 October 2022: Panel on Birmingham Children's Hospital - A

This was the sixth Panel of people to come and give oral evidence to the Inquiry. The subject returned to the horror-show of how children were exposed to fatal viral infections such as HIV/AIDS and Hepatitis while yet in their ultimate innocence. The focus for this day of evidence was Birmingham Children’s Hospital. As with Alder Hay in Liverpool, Yorkhill in Glasgow, and others, it was expected to include evidence that “must be heard”; with the “must” pointing to it containing more excruciating experiences of forlorn families. This would not be information anyone would want to hear. It would likely be disturbing, discomfiting, and despicable in nature – being the very reasons for the imperative to let it be spoken out. Specific press coverage had started before the evidence began and had attracted the all too rare sight of actual journalists in the hearing room. Even through the relatively distancing prism of this writing, readers will hopefully benefit from some foreknowledge to steel the tender hearted.

(There was a delay in starting due to one of the witnesses’ late arrival by public transport.)

The Chair apologised for the late delay. There was to be an anonymous witness appearing later and their evidence was not going to be streamed either live or via YouTube.

The first witness spoke about her three sons who were patients at Birmingham Children’s Hospital. The older son had a major bleed into his brain when very young. That was when his severe haemophilia was discovered. There had been no prior experience of a bleeding disorder in the family. From the brain bleeds was left with some impairments. Mum was already verging on tears as she spoke. Two other sons were also diagnosed with haemophilia. There was a fourth child, a girl, who was born after the death of the first boy. Some pictures were displayed, and sadly the age reference points were things like when one of the boys was infected or when one died. The boys were treated with factor concentrate from a very young age, and it was understood to be mostly commercially imported US product. The witness did not remember ever being told of viral risks. Hepatitis risks were never really discussed but it was understood to be less serious than HIV. It only became overt when the HBV vaccine was given. The witness had worked in a healthcare setting so was not unfamiliar with the settings or the way things happened.

Opinion from Prof Savidge on the boys’ treatment was reviewed from a report related to legal action initiated by the witness. It described the normally preferred use of cryoprecipitate over concentrate especially on young children, but there had been no explanation why the commercial product was used in Birmingham. He described the ongoing use of the Armour as “negligent”. Armour was the sole commercial provider to the hospital. There was no proper batch management, and this again was described as negligent. The treating clinician was Dr Hill, who had said it was policy to do what he was doing. The nurse in the unit appeared to be more likely to use cryoprecipitate when treatment was required. A meeting vaguely described to be about positive HTLV-III tests was held for parents in 1984. The witness was shocked by the number of people there. It was revealed that testing had been done on stored samples as part of a research activity. The fact of there being stored samples was a revelation in itself. The advice was that parents would be better not to know if their child was infected by AIDS in case it meant they treated their child differently (how patronising). On another visit to the hospital, the witness saw a list of boys names attached to a fridge door. It included one of her sons, the oldest, who she suspected was infected due to the large amount of factor he had received. However, she saw the name of one of her other sons on the list, too. Then she demanded a meeting with Dr Hill who confirmed that both boys were infected while the third was not. It appeared that the first Armour treatment had infected the first son when he was 1 year old. Trying to keep the home setting as clean as possible as a place to stop transferring the virus around the family was very difficult given there were three small children in the home and a lot of haemophiliac bleeding. On one occasion she asked if a particular brand of washing powder would kill the virus but was told there were far more important things for them to research. The oldest child died aged 8 years old. It later turned out not to be a death from AIDS but from another brain bleed. It was probably the first “AIDS death” in the hospital. It took some time for the witness to accept her son was not coming home. The hospital was not geared up for such a death, so it had to be handled through the Coroners’ Office. The Coroner was described as being “excited” to have an AIDS death and went to the press to express this, including disclosing the boys age and haemophilia status. The oldest boy’s special needs school head teacher was very abusive over the phone about the mum having not told them of his viral status. The witness found this to be such a shocking response she eventually had to put the phone down. The school for the other HIV infected boy was more reticent but tried to find out “how he was”. The local press was digging around to discover who the family was, so they went away to stay with friends until the furore died down. Then the family moved schools. The younger boy was not told immediately about his HIV infection. By aged 10 he was asking questions, so his father had a talk with him in the family garden, which was very difficult. The family took the health authority to court. On Day 2 the witness gave evidence. On Day 3 Dr Hill was to give evidence the health authority offered £75,000 in settlement, which the family agreed to. Years later the witnesses’ father-in-law happened to meet a person who was a junior doctor under Dr Hill at the time of the settlement who said the family should never have taken the offer – suggesting they should have been paid much more. Some time after the court case ended prematurely, Dr Hill wrote to the family seeking that they take the remaining sons to a different hospital to be treated. One of the reasons for taking the settlement money was down to the good relationship they thought they had with Dr Hill and hadn’t wanted to disrupt the relationship. However, despite the witnesses’ work within the health service and her knowing the ways to reverse the decision, they were eventually persuaded to shift the treatment to the hospital where Prof Savidge worked. Dr Hill had provided a written statement in relation to the legal action. He justified the treatment by citing availability of products and the unsuitability in many settings for cryoprecipitate use. There had been an incident when a SHO had, for the first time, treated with commercial concentrate for an unknown reason, but that doctor could not be identified even by his signature, and since that use had happened, it was deemed reasonable to continue using product from the same batch. DR Hill had disclosed his prior knowledge of viral risks but downplayed the potential for blood product transfer while asserting the benefits of minimising bleeds as a reason for the use of factor concentrate, as well as it being preferred by patients. He said the risk issues were always discussed. A table of products used were compared by the Chair against the general reported use by the hospital. An incident once occurred when a doctor came into a room and in front of the youngest boy said in summary fashion, the second child had HIV and the third boy had HCV. The boy had not known about his own and his brother’s infections by that point. The witness recalled hearing the evidence of the Alder Hey parents and had to go for a long walk while she cried. She had accepted that the second boy would also die of AIDS, but he didn’t. He had been close to his brother who had died. It had a very negative ongoing effect on the boys mental health. The witness had sought psychological support, but this was not recommended. The boys education and personality continued to decline. The witness said he was never the same person again. There had subsequently been a reason to enquire about the circumstances of the death of the first boy, and it was discovered that some post-mortem material had been retained. This was also news to the witness when it came to light. An application had been made to the Skipton Fund, but this was unsuccessful due to the ages of the boys and lack of evidence. Upon the witness hearing evidence during the Inquiry there was the thought of re-applying, but there was no new actual evidence to submit, so this has still not been pursued. The assumed fact of her sons having received large amounts of factor concentrate as an automatic route to financial support did not seem to apply to them. The witness felt guilty about applying since there was a reasonable income into the family, but not being accepted on to a scheme was certainly not a just outcome.

The second witness was the mother of a boy born in 1972. Haemophilia was known in the family, and it turned out he had been diagnosed as severely affected. As a baby the child was treated with cryoprecipitate at first. The it shifted to UK factor product. On one occasion an out-of-hours doctor used commercial Armour product. The witness did not remember any effort to maintain batches, “You were just given what was in the fridge”. She did not recall ever being told about risks, but just trusted that when the doctors said the continuation of the treatment “was in the children’s best interest”, it was unquestioningly correct. The witness spoke about the guilt of not asking more questions, and especially of being the person giving the treatment at home, “Was I the one who infected my son?” When the boy got to about 12 or 13 the Dr Hill insisted the consultations happened alone, without parents. His behaviour started to decline, for no apparent reason. It turns out the boy had been told by Dr Hill that he had AIDS without the parents knowing. She only discovered his HIV status when she happened to see it on the notes at the end of the bed on an occasion when her son was in hospital. She was disgusted to have to find out this way, and that the boy was told without her being there. This was seen as the reason behind his personality change. There was no reason to stick in at school if he was going to die soon anyway. The mum was still treating her son at home but had never considered she could have been at risk of AIDS without knowing of her son’s viral status. Her otherwise intelligent and academically promising son lost interest in school and stopped attending without his parents knowing. Some time later a letter arrived notifying him that he was also infected with HCV … by letter. By then the boy was a teenager. He was attending the adult hospital. He completely changed from being a sociable, happy boy into a person who had mood-swings, was occasionally volatile, hallucinating, withdrawing from everything, and just unhappy. He would punch doors and walls out of frustration. He did not want to talk to anyone about his haemophilia because of the links people would make to AIDS. Even the boy’s younger sister wasn’t formally told. Most of the family did not know anything. As a young adult he became increasingly distressed. He was once in hospital but couldn’t take it any longer, so he pulled out the drips, walked out the hospital, was eventually talked back in, and ended up in a locked ward. His physical health deteriorated in many ways. The first time the family found out their son was terminally ill was via the GP. Even after that, the communication was so poor from the hospital that the witness was not there when he died. He died aged 24 years old. He had never been offered counselling or other support. Later the witness sought psychological support herself, but there was nothing available. The witness stated how she had to compartmentalise the whole situation and just get on with life. She had a daughter to think about. It has all been bottled up, and she just did not know what to do. By this stage the witness could not help getting emotional. Some pictures were displayed of the son and his family. The tenderness was palpable.