'My dad campaigned for justice for decades – now it's my turn'

Teacher David Edwards was infected with HIV as well as hepatitis B and C and campaigned for justice throughout his life

Growing up Lucretia Edwards knew lots of things about her dad – he was well-read and interested in science and philosophy but never sports. He was disabled and walked on crutches but some things were kept from her and her brother. Like why her dad's toothbrush was kept housed in a travel container separate from theirs in the bathroom.

It was only when she was around 25 she was told that her father had HIV and hepatitis C and was one of the victims of the contaminated blood scandal. The family has recently discovered he also had hepatitis B.

David Edwards' early years were defined by his severe haemophilia. Born in 1935 he spent a lot of his childhood in Great Ormond Street Hospital in London. His treatment overlapped with the Second World War and he could remember the bombs of the Blitz hitting London and glass landing on his bed as windows shattered. For our free daily briefing on the biggest issues facing the nation sign up to the Wales Matters newsletter here.

He wasn't ever well enough to go to school but he had a tutor in English and maths and went on to study philosophy at university. He was disabled and always needed the help of crutches to walk and was never able to play sports. That was the one thing he never had an interest in but he was, his daughter said, interested in everything else. "He had a very full life and was very positive," Lucretia recalled.

In his early 20s, as a newlywed, he had a number of near-death experiences due to his haemophilia. When a treatment came out that could be administered at home. he took up the offer. It was that treatment, of Factor VIII plasma, which led to him being infected – first with hepatitis C and HIV but also hepatitis B, though it took years for that to emerge.

David was interested in science and read the New Scientist. In the early 1980s it was David who approached medics at the University Hospital of Wales to tell them about the possibility of contamination.

His doctor told him it was highly likely he was infected with HIV but there was, at this point, no test available and he had to live with the knowledge he was most likely infected and the emerging details of what that would mean for his health. When testing started the diagnosis was confirmed.

His daughter was, at the time, at university studying biology and had heard of the Aids epidemic and HIV but the family kept quiet. "We never spoke about it – it was never something that was talked about. I never asked any questions and my parents didn't talk about it because of the stigma that was associated with it," Lucretia said. "There was no treatments at that time so he just had to try and get on with life."

The Factor VIII he was given led to his infection. "My father was horrified when he learnt the treatment came from drug addicts in the US," said Lucretia.

David worked as a teacher at the then-Gladstone Junior School in Cardiff. "He was a very determined person and very charismatic. He was the sort of person who would talk to everyone," his daughter recalls. Throughout his life he would walk round Roath Park every day, weather-dependent.

Her father, along with Gareth and Hayden Lewis, set up the Birchgrove group in Cardiff and campaigned throughout his life. He did a lot of research into treatments, participating in clinical trials for new HIV medications. The side effects were countless and "horrible". He would have to wake himself at 2am to take his medication "but he was so determined," his daughter said, "even though the side effects were horrible".

"Life was difficult for my father but he was a very optimistic person," she said. "When I look back now, looking at what it must have been like for my parents living with that, not knowing and not telling us and not wanting to talk about it...they must have been really strong to survive all that and keep going and keep a positive outlook."

Lucretia was at the Senedd for a recent event to try lobby the Welsh Government to put pressure on the UK Government to speed up the compensation process for victims. A total of £11.8bn has been put to one side and promises made but the process is being criticised by those infected and a secondary group of affected people.

"My father, if he was alive today, would have been campaigning for 45 years," she said. "Some say: 'Why are people questioning this? This was 45 years ago it happened.' But this is the reality – we're lucky to still be alive, to still be able to do some campaigning."

She wants to see justice. "It's justice for all these people that have lost their loved ones through absolutely no fault of their own but through a whole fault of other things that have gone on – either with the government, with the medical profession," she said. "It just keeps going.

"There are things that they could do now that would improve the speed of the compensation payments. To me the compensation payments are a means to bringing closure to people but also my father had to retire early.

"My mother had to give up work early to care for him. My brother and I, when we were growing up, we weren't even told that he had this horrible disease. We weren't told until we were old enough and we've gone through school because they didn't want it to impact us through school and things.

"It's bringing some sort of closure and also to try and financially support these people who have had to give up work, they've lost jobs, have had a terrible sort of existence really. I think the compensation payment sort of marks the sort of bringing justice, really, to people."

Asked if she has any faith they will get what is owed to them anytime soon she said: "You can be very sceptical about why it's taking such a long time and why they're not listening. If you talk to the lawyers... they can see mechanisms by which it would quicker but they're not given the opportunity to talk about it.

"People are not sitting down round the table saying: 'Okay – how can we speed up these payments'? If this were a commercial organisation and this was the issue people would be sat around the table asking: 'What can we do to improve the speed on this?'.

"The compensation scheme is quite complex but even so there's ways and means to improve the speed. For myself I've personally gathered the evidence that we need as a family to support my mother in my father's claim. But I could provide that to somebody now – there will be others out there like that.

"The [UK] Government are talking at the moment about all the billions of deficit we started with and what the Conservative government have done. Well they've now got an opportunity to turn all that stuff around about what the Conservative government didn't do but you think: 'Is this a way to sort of potentially save some more money for the government in the future?' It's just not right".