Suffolk man infected with contaminated blood 'still traumatised' 40 years later
In 1985, Alan Burgess visited a doctor to get his Haemophilia treated - and was given blood infected with HIV
Last updated 4th Aug 2023
A Suffolk man caught up in the infected blood scandal tells us he's still traumatised almost 40 years later.
In the 1970s and 1980s, a large number of people – most of whom had haemophilia – were infected with hepatitis C and HIV and have been living with the consequences ever since.
Alan Burgess was one of these people, and was infected in 1985.
"Dear Mr Burgess, we regret to inform you. You've tested positive for the AIDS virus"
He told us he was just about to leave for work when he received the letter:
"That was tough obviously. I had been doing a little bit of research on AIDS and HIV in the correspondent time it took from the test to when I heard.
"And I thought, well, this is not going to be good. The Letter went on to say 'any problems, please ring us'.
"We rang them, went up to see them, but they couldn't give us any advice really."
Alan and his wife chose not to tell their children straight away.
Unfortunately, for many who were infected, they didn't know until years later. A
lan told us around 45 wives of those affected were also been infected because of this.
"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 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 since:
"It was great, 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."
Dwindling numbers and survivors' guilt
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
The Contaminated Blood Inquiry has acknowledged the need for compensation for those impacted but has given no indication of when this will be.
Chancellor Jeremy Hunt has said they are in active discussions about the levels of compensation and how will it be funded.
Alan told us this was disappointing as in nearly 40 years they haven't stopped fighting for justice and they will continue to:
"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. Not going to bring back my health. That's not going to bring back my mental health. That's not going to bring back 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.
"This is going to go on until the day we die and if the government's listening: please just help us live the rest of our days in some sort of peace and some sort of better place than what we're in now."