8 July 2022: Grayson - A

Carol Grayson is first and foremost a widow – to a deceased haemophilia husband and soul-mate. Her life-changing losses were caused by the NHS Contaminated Blood Scandal. Carol has been and still is an outstanding campaigner, and outstanding academic researcher, an outstanding witness and advocate, and an outstandingly outspoken personality in the world of seeking to right the wrongs of infected blood and blood products. Her personal experiences are horrific and could be triggering to others with their own heart-wrenching histories.

Counsel started by leading with questions about her husband Pete who had severe Haemophilia A, and his brother Stephen who had moderate Haemophilia A and attended Treloar College. Pete seemed to do well enough being treated with Cryo. His brother was involved in a study while at Treloar at the invitation of their Haemophilia Consultant, Peter Jones, in a letter to the parents, which said it could do nothing but good for the boys there. When the World in Action documentary was broadcast, the father had an angry exchange about what was said in the programme, but he was placated enough to agree for the boys to continue to receive factor concentrates.

The witness has a good record of batch numbers and explained the systems of green cards, which included origin sources. The only advice about a possible side effect of the new factor concentrate treatments was described as no worse than a cold. There was no mention to parents or the boys of any risks of serious consequences such as AIDS. Pete had no idea he was being tested for HIV or latterly that he had been infected. He was also infected with Hepatitis B, and later HCV. At one point the patients were all required to undergo a rectal examination. The only reason the witness could think of to explain this was they were checking for any of them who might be gay, or to rule that out.

The witness accompanied her husband when he was told his infective HCV status. Initially, he did not realise the significance of the disclosure, especially because of how it was explained. Carol was a nurse so did recognise how serious this news was. They approached the HIV lawyers, and from that discovered the implications of the Hepatitis waiver from the time of the HIV Litigation.

The young couple agreed to enjoy travelling, especially since Pete’s parents had justifiably not gone on holidays. Carol promised to look after Pete on their travels. Pictures were displayed of some of their journeyings. It was clearly a significant outlet for, and distraction from, all the health difficulties being faced. An excerpt of the tv documentary featured Pete’s father. A year later the father died early since his health had declined due to what was happening to his family. His mother was devastated for the rest of her life and never got over it until she died.

The younger brother Stephen died of AIDS aged 20. In the year between being told of his HIV diagnosis and his death, he suffered complex and serious physical and mental health concerns. The family home was daubed with painted messages about AIDS, people crossed the road to avoid the family, and the mum had a separate cup at work. Stephen was buried in a lead-lined coffin. Without permission, he had several organs removed, which affecting the way his mum could (not) properly say goodbye to her youngest son. There were press photographers  clamouring at that intimate event.

Pete went in to have a dental extraction and woke up with all his teeth removed with the justification being that it was better to do it all at once, but without warning him. It took six months for this young man to go without dentures before they were eventually fitted. Pete once had a baying crowd outside his house and had to get the local GP to come along and explain how people in the community were not at risk. Carol had a miscarriage, and she had the experience of medical professionals not wanting to touch her because of her husband’s AIDS status. The news of vCJD was compoundingly devastating, and for Carol there are still impacts. Once when he had a major bleed at home, people in bio-hazard suits turned up at the house to remove carpets and other items. It was a reminder of the way they had been treated at the times of AIDS.

Treatment for AIDS had included AZT, but this was suddenly stopped. It had terrible side-effects and turned out to be detrimental to the very immune system he was so desperately in need of having strengthened. The treatments for HCV were also very detrimental. The experiences of hospital “care” included not being given essential transport causing him to have to take taxis and crawl for three hours along the garden path to get into the home, and of staff throwing a towel at Carol when she wanted something to mop up bleeding while Pete was in the hospital. The list of co-morbidities Pete suffered was lengthy and they entirely compromised all aspects of his life. He did attempt to take his own life.

Pete went on a treatment strike and stopped taking human-derived factor concentrates while demanding access to recombinant. He was a great campaigner for recombinant for children. He and Carol sought a judicial review which was unsuccessful due to the precedent it would set, despite the judge sympathising with the family. So, they were left to fight against a postcode lottery.

Pete dies a tortuous death. Carol wanted to die with him in a suicide pact, but Pete insisted she stay on to fight for justice. His last days were spent in a hospice. Pete had insisted on carrying on with the campaigning work, and for Carol to continue to care for those at the house. She received a call from Pete saying he was dying, and she had to get back to him as soon as possible. He died on a trolley by drowning in his own fluids. Carol saw the blood in the oxygen mask and ripped off the mask to help him die more quickly.

Carol had been forced to give up her career so she could care full-time for Pete. They basically lived on minimal state benefits and eventually there were some pay-outs from schemes. There was never any support for the full-time carers (most often wives and partners). The schemes minimised the role of carers. Carol reported how, from her own and others’ experiences, the benefit system puts people through demeaning and humiliating assessments and takes no account of the causes of the physical and mental health limitations. This relates to both the times when Pete was still alive and since she has been on her own, suffering from a raft of health issues directly attributable to her life of caring for Pete.

The morning session ended with a link back to images of Carol continuing the practice of international travel, the way she had done with Pete. They showed her travelling around parts of the world along paths less trodden, which itself is an effective motif for her life.