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

The third witness had already featured in news items that morning. (The first witness was slow to return to the platform because Channel 4 were interviewing her.) The third witness was in attendance to speak about her son, born in 1969. He was diagnosed when aged about 2 years old. He kept getting bad bruises just from crawling about. The doctor initially tried different approaches, even trying to gently ask if he was being hit at home. A new doctor suggested a hospital referral. The infant was kept in overnight and mum was sent home (to cry her eyes out). She was told he had haemophilia, but this was a surprise since she had never even heard about it. It was subsequently discovered that somehow she and her sisters were “carriers” of haemophilia. That began the life-long new normal of regular hospital visits. He started being treated with cryoprecipitate, then UK factor concentrate, then US commercial factor. The reason for the final switch was said to be a lack of supply of the UK product. A document from the haemophilia litigation confirmed the various changes of product, including Scottish factor. The witness was never given any choice over treatment. The meeting at the hospital was “a lot to take in” but the witness felt it was something very bad. The meeting was led by Dr Hill. He had given a presentation including the information about the sources of the commercial blood. The attendees were told it was best not to ask for their childrens’ infection status. They were told about signs to look out for, including the glandular fever her son had. The witness later asked the nurse about her son and she had said, “it’s alright, he is fine”. After that there was a meeting which seemed to be about the son being transferred to the adult service. The husband had stayed in the car. At the meeting Dr Hill told the witness and her son that the boy was infected with AIDS. The witness then had to go out to the car and tell her husband. The fairly long journey home was in silence. She did not know her son was being tested. About a year and a half passed between the hospital discovering the viral status and the family being told. That had been pretty much the last time they saw Dr Hill. Her son was transferred for his care to the adult hospital. There was no knowledge of blood being stored and tested. After her son’s death the mum met another doctor in a car park and as brief condolences were expressed it was revealed the son was also infected with HCV. What a way to discover something while still in mourning. As the virus(es) took hold, there were increasingly deleterious effects on his health. It was as if he had flu all the time. He was badly affected by diarrhoea, pancreatitis, terrible headaches, his head swelled up to twice the size at one point, psoriasis in his head and scalp, a loss of appetite and significant weight loss, and more. A lot of the worst happened during her son’s teenage years. He did not talk about it and didn’t want people to know. Only the closest family knew. The mum was very proud of how he coped in the face of so much. He had wanted to be a sports photographer since he loved football but he could not play. He was given AZT after a consultation one-to-one with Dr Hill. He started taking AZT as a well boy, but he quickly started to “go downhill”. At the end stage her son was living with his girlfriend. She left but told the family through a social worker and never returned. It was then discovered that his bank account had been emptied by her. The young man returned to live with his mum who looked after him. At the end of his life at age 26, he was in hospital and his mum stayed by his side for the final week, sleeping in a chair. She had to stop working to look after her son, and after the boy died, his mum became ill herself. It meant the husband had to stop work to look after the witness. Of course, that would bring its own additional problems. At no point was any counselling or other support offered. Her sun apologised for not giving his mum grandchildren. There were no siblings. She thinks of her son every day. It never goes away. Just before he died he asked his mum to help him to the window to see the rain. He knew he would never see rain again. The witness started to break down at this point. A small selection of photographs of her son were displayed. Despite her grief, the witness insisted that people needed to see her son as a real person.

Counsel began a short group discussion, firstly on the issue of trust in doctors. They all felt they trusted doctors too much, but then that is what you did. The treatment was what the doctor ordered and there was no reason to question that. On a related matter, they were asked about choice. Basically, there was no choice offered. It might have been a matter of a lack of choice within the NHS due to supply issues. The third question was about how people were told of their child having HIV or HCV. It was seen as cold, inadequate, and just poor, such as them sending a letter to a teenager without any warning or offer of support. The delays in being told, the fact of finding out by accident, the knowledge that others in the health system probably knew more than they did about their son’s health issues were all problematic. The delay in knowing included periods when boys might have had and did have girlfriends and could have passed something dreadful on to them, in total ignorance.

The Chair had no further questions.

The witnesses were grateful for the way the Inquiry had supported them. There was a message to the NHS that it would have been very helpful for the Inquiry to have happened years ago, and that records should not be destroyed, but offered to families to keep. It was the first time one of the witnesses had ever spoken at length about these matters and was grateful for the chance to finally speak openly, as a way to “put these things to bed”. There was mention of the effects on the wider family, such as the death of a grandmother six months after the death of the grandson who she was so very close to. They felt the whole situation had ruined lives “because you never get over it”, it is “a black cloud that never ever goes away”. They were, however, so proud of the way their sons handled what happened to them, right up to the end.

The Chair thanked the witnesses for their obviously emotional testimonies. Their evidence had been the “best testament” to their children.