My life with infected blood: Alan Burgess' 40-year fight for justice

ANG 160524 Infected blood campaigner Alan Burgess, from Ipswich.
Alan Burgess, from Ipswich, has been campaigning for justice for victims of the infected blood scandal for almost 40 years. Credit: ITV News Anglia

Alan Burgess still has the letter which changed his life.

He remembers the brown envelope dropping through the door of his Ipswich home.

His wife brought it to him with his morning cup of tea. It was September 25, 1985.

"Dear Mr Burgess," it began. "We have at last had the result of your test and I'm extremely sorry to say that it has proved to be positive for the AIDS-associated virus.

"This obviously will be of some concern to you and your wife."

  • Alan Burgess spoke to Rob Setchell about his fight for justice.

Alan was 27 at the time. He was an active man with a young family and a thriving painting and decorating business.

He was also a haemophiliac - one of more than 1,200 given blood infected with HIV and hepatitis C by the NHS during the 1970s and 80s.

At first, he carried on working. His diagnosis became his darkest secret.

In an era where stigma and ignorance dominated discussion around HIV, people became suspicious of Alan's condition. His daughters were bullied. His home was vandalised.After several years of struggle, the constant infections became too much. He was hospitalised with pneumonia and almost died.

He had to give up work. Doctors warned he should prepare his will.

"I had friends who were dying with HIV," he said. "I'd lost my business. I could see my family was going through it. I wasn't that nice to live with.

"I ended up in a mental hospital for six weeks. I wanted to kill myself. I thought everybody would be better off, family-wise, if I wasn't here."

The letter sent to Alan Burgess in 1985.

But then Alan stumbled upon an advert for a support group called Birchgrove.

Speaking to other haemophiliacs, who'd suffered the same pain and injustice, gave him strength, friendship - and a determination to ensure his voice was heard.

The first Prime Minister he petitioned was Margaret Thatcher. He wrote letters, lobbied MPs, attended demonstrations.

At one stage, he threatened to go on "treatment strike" and stop taking the daily drugs that were keeping him alive.

All the while, his fellow campaigners were dying. He lost count of the number of funerals he was attending. His friend Jeff was one of many who died before ever seeing justice.

"The first time I met him (Jeff), he said 'if you're last, you fight on'. I said 'if you're last, you fight on'.

"That's how I feel. I feel I'm not fighting for myself. I'm fighting for all the lads that have gone."In 1996, Alan helped establish the Birchgrove memorial site in Wiltshire - 1,200 trees dedicated to the haemophiliacs infected with contaminated blood. He visits often.

He said: "What I see there are not just trees, they're people. You feel the love again from the friends you've lost.

"It's a very special place for me and it's just so sad that some of the lads responsible for the Birchgrove are not here to see the final day of the inquiry because, to be honest, we never thought we'd get one."

But they did - and it took decades.

The culmination of the inquiry into the infected blood scandal, chaired by Sir Brian Langstaff, is not the end for Alan - or thousands like him.

No sum of money, he says, can repay what has been taken.

But it is a moment to recognise one of the great injustices and to remember those lost.A moment when, after 40 years of trying to be heard, someone listened.

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