Content warning: This blog post contains graphic descriptions of a dead body in the mortuary which may be distressing or upsetting for some people.

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.

Sue and Bob Threakall met through work and married in 1981. Sue was a Deputy Head Teacher and Bob was treasurer of the Parent Teacher Association and a father of two boys.

‘You've got all these plans of probably more children, doing the house up … kids going off to secondary school, university and all the rest of it, and then suddenly, wham, the whole lot collapses ... like having a kind of earthquake in your life.’

Bob received his hepatitis B diagnosis the same year he was married and his HIV diagnosis four years later. He died in February 1991, and his post-mortem revealed that he was also hepatitis C positive, which they were not informed about at the time. Bob’s death, and the events leading up to it, have had a devastating impact on Sue and her family. She is no longer in regular contact with her stepsons, and Bob and Sue’s son has ongoing mental health issues.

As the HIV progressed and his health worsened, Bob had more and more time off work and Sue had to give up work to care for him. ‘He had loads of minor infections like urinary tract infections, throat infections, chest infections, ear infections … You name it, he had it. He lost an awful lot of weight, stopped eating properly and his personality changed as well ... He got unbearable, grumpier, and suspicious … just not him at all.’

The days before Bob’s death, Sue took him to the hospital as his skin had turned blue. At the hospital 'the doctor said, “Well, he doesn't look as bad as you said he was on the phone” ... I'll never forget that. Bob was dead within three days.’

When Sue and her family tried to visit Bob’s body the next day, the hospital refused. ‘Ted Ryan, chair of the Birmingham England group of the Haemophilia Society, kicked up such a ruckus that [the hospital] finally allowed us into the mortuary. They would only allow the body bag to be unzipped to chest height ... they put this awful collar thing round him … it was hideous.’ It appeared that his body had not been touched or washed. Bob’s eyes hadn’t even been closed.

The Macfarlane Trust was the Government-sponsored charity set up to financially support patients and their loved ones. Like many others, Sue had to make a case to the Trust to receive the grants they were entitled to. ‘I used to apply regularly for me and for [my son], even though I was turned down nine times out of 10, simply because if I didn't, they would forget us. And that's what they wanted. They wanted to make sure the widows were side-lined.’

During the inquiry last month, historic emails sent by the former Macfarlane Trust Chair Peter Stevens showed that he had referred to claimants as ‘unwashed’, 'moaners' and 'thick'.

People, Sue included, had to ‘beg’ for grants. If they were approved, they weren’t given cash instead it was vouchers. ‘You end up going to Curry's with a whole heap of vouchers in your hand, you know, £300 worth of vouchers.’

The shame of the situation ‘turned us into liars’, she explains. Sue would tell retailers: ‘I work for a charity and it's the only way that they do it. What else can you say? … I'm a charitable cause and this is the only way that they trust us? They wouldn't give us any actual money.

‘None of us were asking for Caribbean cruises or yachts or anything like that. We were just asking for, in my case new glasses and a laptop. People were asking for clothing grants and things like that.’

At one point, the Trust refused to offer grants and offered loans instead. ‘You get desperate you think, “okay” because by that time, I'd had a business which had failed.’

Sue currently has cataracts. ‘In my old life, I would be on a good pension, I probably would pay to have them done privately ... but I'm not in that life anymore.’

Due to loss of earnings and debt, Sue took a loan from the Macfarlane Trust: ‘you just want the debt all to go away. But yes, they got me a loan … but then they charged it against the house. I think it was five or six grand.' The Macfarlane Trust closed in late 2018 and its remaining assets were transferred to Terrence Higgins Trust, including the loans, which the charity immediately cancelled. ‘I don't think I've ever officially thanked Terrence Higgins Trust for that ... I remember looking at the letter in absolute shock, [thinking]: “Oh, my God, it's gone. Yes, that charge is gone!”’

Northern Ireland has announced that the loved ones of those who have died will receive yearly payments of up to £33,500. In Scotland, bereaved partners currently receive 100% of their deceased partner’s payment for 12 months, then 75% of that amount going forward. ‘I get nothing other than a small top-up payment, because I'm in England... It's all happened under the same Westminster government, but health is [now] a devolved issue.’

Sue is currently the Secretary of Tainted Blood, a campaign group led by those affected by the Contaminated Blood Scandal. She has been involved in various ways for several years, including as Chair and Co-Chair. Fighting for justice and acknowledgment has been all-consuming. ‘We're a very weird lot of people ... We're not like everybody else anymore. We were like everybody else. We were just ordinary people getting on with it … You've got all the normal stresses and strains that everybody has. But the amount of funerals I've been to, dear God!’ This, she argues, has been impactful, and is irreversible. ‘We’re excellent at organising a good funeral now,' she says.

For Sue, the inquiry is about vindication. ‘I want to be able to look people in the eye who have said to me over the years, “Oh, you're just after more money, are you?” This even includes family members who've said, “Don't you think you should just move on? Isn't it time you got over it? They didn't do it on purpose, you know, it couldn't have been helped.” All those people, you know, I'd like to be able to look them in the eye and say, “There you are, there are the findings of the inquiry.”

‘I hope Sir Brian Langstaff gets it right, because if he doesn't … this whole community's going to fall apart, they are going to be utterly devastated. Because this really is the last chance to get to the truth.’

Bakita Kasadha is a writer, researcher and activist living with HIV.

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