Terrence Higgins Trust is supporting those living with and affected by HIV as a result of the Contaminated Blood Scandal. During the 1970s and 1980s, blood products infected with HIV and hepatitis C were given to people living with haemophilia and other blood disorders. Thousands of lives were lost as a result and people continue to be impacted today.
In 2018, a public inquiry began into the Contaminated Blood Scandal. It is believed to have included the largest number of participants of any UK public inquiry to date.
Through our Last Chance for Justice series of blogs, we hope to amplify the experiences of a group of people who are less known but are very much part of UK HIV advocacy. In these blog posts, you may read language that is less used within the wider HIV community. In many ways, this illustrates how unique their experiences are and how important it is that they are represented.
This is Beverley Tumelty’s story
Beverley Tumelty is a neurosurgery nurse at the University Hospital of Wales and the youngest of five children. She grew up in Cardiff with four older brothers. 'We used to have great adventures. I just always remember being with them. I'm not sure they always wanted me to be with them … Lots of the time, it was "take your sister, or you're not going" sort of thing. I had a great time!'
Haydn and Gareth Lewis were the eldest of the five. They were nine and seven years older than Beverley respectively. Both Haydn and Gareth died in 2010, just months apart. They had received blood products infected with HIV and hepatitis C.
They found out about their diagnoses in the mid-1980s, and believed they had six to twelve months to live: 'You're just sitting there waiting for them to get really ill and die, which thankfully didn't happen … they stayed relatively well.'
In the mid-1990s, effective HIV treatment was available. The brothers handled it differently: Gareth struggled to take his medication.
Before he was unable to work, Gareth was a watch and clockmaker. As his health worsened, he got more involved in campaigning. He was 'building the charities up ... getting charity funding for the Haemophilia Wales group and The Birchgrove Group and getting it on the map.'
The diagnosis had a significant impact on his mental health and relationships. 'His marriage didn't last very long … They were trying for a baby and they were advised not to have children … that sort of went sour very quickly.' After the marriage ended, 'he was quite insular for a while ... You didn't really see much of him, [he] didn't really have much to do with the family. And then he sort of picked himself up again ... got back into the campaigning and trying to put a positive spin on things.'
Gareth still struggled with his medication though. When he felt well, he was less inclined to take it. He had ongoing health issues until he died: ‘He had depressive episodes as well. And yeah, there were lots of times he nearly died ... He had [pneumonia] and lots of issues with his chest … He planned his funeral, I don't know how many times in his head.'
In contrast, Haydn took his medication consistently. Before his health worsened, 'Haydn was a master carpenter, and he was just so clever, he could build anything ... Him and his brother-in-law started up a building business.’
Haydn married at 19 years old. He already had a young family when he found out about his HIV and hepatitis C co-infection. He had unknowingly passed HIV onto his wife, which ‘devastated’ him and ‘just completely broke his heart.’
The financial impact was severe. Those infected 'couldn't get house insurance, they couldn't get mortgage insurance, they couldn't get life insurance.' Haydn's dying wish was for his wife 'to be comfortable after he died [so] that she didn't have to worry about the house, and she didn't have to worry about mortgage payments ... I feel for the widows who gave up massive parts of their lives.'
Haydn’s health declined over a long period of time. The hepatitis C led to liver cancer, for which he received a transplant and recovered well. The transplant gave Haydn another year with his family, but the cancer returned. With his permission, the doctors tried new and experimental treatments to prolong his life, but Haydn died in May 2010.
Gareth died suddenly from a brain haemorrhage in December the same year. The family had planned a trip to visit their other brother, who lived in Spain. Gareth had always intended to go but decided to book an earlier flight when he found out that Beverley was going earlier. If he had stuck to his original flight date, he would have died before getting to Spain. Beverley considers this 'lucky'. 'Otherwise, he would have collapsed on his own in his flat and died and we might not have known for days, which would have been horrible ... I see it as a fateful event, we were meant to be there. We were all meant to be together.'
Before their deaths, Haydn and Gareth campaigned tirelessly. Haydn was the Chair of Tainted Blood. ‘Their personal investigations and tirelessly asking for papers, the Freedom of Information Act ... just trying to get to the truth of things really.'
Gareth 'was always very, very fretful for any of the younger children in the haemophilia centre' and insisted on taking older treatment, so that the children could have the newer ones. They campaigned for synthetic treatment rather than blood products.
Beverley's son has haemophilia. As an infant, clinicians gave him treatment from human donors and extra blood tests. Concerned, Beverley asked about the tests because 'they were reassuring me at the time of the safety of the blood product, [but] why were they still needing to check his bloods?'
During a family support day, when her son was still a child, Beverley met a London-based nurse who asked about her son’s treatment: ‘[The nurse] was like, "oh, they're still using that." She called it "a soup".’ At the time, treatments were created from multiple donors.
Years later, her son (then 17) received a letter stating the treatment had exposed him to parvovirus. Most of the time the virus is harmless in children but can be serious in adults. The letter also stated that he had been exposed to CJD, as one of the donors had died of it. CJD is a rare fatal condition that affects the brain: '[The letter said] he's a public health risk like if he goes to the dentist, he has to be treated last.’ Her son is now 32 years old and has shown no signs of either of these conditions.
Beverley took a break from campaigning after her brothers died, but involved again because 'I just felt that I was doing them a disservice by not carrying on with what they'd started. I suppose you could say I got the bug. I really just thought, "No, we need to carry on." And then they announced the inquiry.'
Beverley hopes the inquiry will reveal the 'truth … I want people to admit to the truth of it and why it happened.
‘Had all of these people died on the same day, the shock of it, the reverberations of it would have been massive, but it hasn't been because of the drip effect. It's like, "Oh, yeah, it's just another two. Oh, it's another one." Cumulatively those numbers are massive … more than other disasters that have all had public inquiries, and all had settlements and closure for families.’
Bakita Kasadha is a writer, researcher and activist living with HIV.