Ipswich victim of infected blood scandal says he and his family are still suffering
In 1985, Alan Burgess visited a doctor to get his Haemophilia treated - and was given blood infected with HIV
Last updated 20th May 2024
A man from Ipswich caught up in the infected blood scandal tells us no amount of money will ever make up for the impact it's had on his - and his family's - life.
Alan Burgess tells us he lost his health, friends and businesses after he was given blood infected with HIV whilst being treated for Haemophilia in 1985.
A report into the scandal, which affected more than 30,000 people during the 1970s and 1980s, is due out next week.
Alan's been calling for answers for decades: "It will still go on for us affected until the day we die - the hospital appointments, the health problems, the drugs and everything.
"It would be nice for the government to pay compensation - that's the only form of justice that we could get now, because apologies don't mean a thing...
"This will go on until the day we die."
He had this message for the government: "Please help us live the rest of our days out in peace, and in a better place than where we are now."
The report
Tens of thousands of people were infected with contaminated blood or blood products between the 1970s and early 1990s.
The scandal - dubbed the worst treatment disaster in the history of the NHS - has been the subject of the biggest ever public inquiry in the UK.
The final report of the inquiry will be published on May 20.
It was announced in 2017, and was led by former judge Sir Brian Langstaff, taking evidence between 2019 and 2023.
"You've tested positive for the AIDS virus"
For Alan, the news came just as he was heading to work: "You've tested positive for the AIDS virus."
He called the number provided and sought out help but he said little advice was given.
Alan and his wife chose not to tell their children straight away, knowing the burden it would bring to them, and how children were being bullied at school.
"We had to hide it"
In the 70s and 80's there was a lot of stigma around AIDS which could lead to discrimination and harmful behaviours from others.
At the time Alan had his own painting and decorating company, which he told us was “going really well”, but he felt he had to hide his diagnosis from everyone, otherwise “the business would have failed overnight.”
After a while his health began to deteriorate: “Everything was an effort really - even just going into work.
"I was trying to fight off infection after infection and I got really ill in the end. I got pneumonia and I went into hospital. I was quite poorly and nearly died.”
Despite the hospitilisation, Alan continued to lie about his condition: “I just said I couldn't shake off the flu and pneumonia - anything I could think of, any lie I could think of.
“I obviously couldn't tell them I had HIV AIDS. If it had come out then, who would have had me in the house? Nobody.
“So we had to keep it under the hat. We had to make sure we got good at lying - which we did.”
However after a while, Alan could no longer work, they lost the business and almost lost their house.
Rumours then began to spread and like many others with the condition he was subjected to vandalism.
Alan told us it also began to impact his children: "It was a horrible time. There was a lot of stigma around.
"I'd told the kids by then, and they were going through it at school.
"It was a horrible time, not just for me, but the whole family.
"People were taking their children out of school."
"I just didn't really want to live"
In order to treat the disease Alan was on a series of medications, which, over time have impacted his other organs.
Whilst the medications kept him alive, Alan says it wasn't a life that he enjoyed: "I was having some horrendous side effects...I was paranoid and I'd have nightmares. I was not very nice to live with.
"I ended up having a nervous breakdown and I was in a psychiatric hospital for a few weeks.
"I came out, got a bit better, but I just really didn't want to live."
Alan told us that because he was so horrid to live with, it put a huge strain on his marriage, and the children and so he separated from his wife.
They stayed close friends and after 3 years of not being together, they rekindled their courtship and have been together ever since: "It was great.
"It was the best thing that could have happened because she's been absolutely rock. I don't know what I'd have done without her."
"You'd see yourself in the coffin"
Whilst talking to Alan he told us he felt guilty for being alive and that he didn't understand why he got to live while so many others have died.
He told us there were over 1200 people affected to begin with, and now there are only 160 left:
"In the early days haemophiliacs set up a group called Burchgrove to give support and help to families of haemophiliacs infected with HIV and Aids.
"The trouble is we were all a social group and my friends were dying. I went to many funerals.
"You could see yourself laying there when you went to visit them in the hospital.
"When you went to the funeral, you could see yourself in the coffin. It was a horrible time."
Continuing to campaign
For nearly 40 years Alan and his family haven't stopped fighting for justice, telling us, even even once this report comes out, it won't be over for them: "It never will be... this will go on until the day I die."
He and his family continue to live with his condition, and he tells us he faces reminders of it every day: "I'm 65 now and I've been living with this for so long, and my family have been living with it for so long.
"Money's not going to bring back my business, my health, my mental health, my sex life or anything like that.
"...Money wouldn't bring back the children, but at least it would feel like some form of justice that's been recognised after all these years."
After fighting against this for so long Alan revealed he is worried about what the report will say as "there's nowhere to go from here."
He has been "let down so many times before" and doesn't want to get his hopes up.
He also recognises that some people, will "expect everything" from this report and is concerned about the "disappointment and mental anguish" that will occur if it doesn't go the way they had hoped.