|Sufferer Tells of 30-year Hell After Being Infected With HIV During an NHS Blood Transfusion
By Andrew Hirst
May 19, 2015
A man from Suffolk infected with the HIV virus during an NHS blood transfusion more than 30 years ago says the time has come for the Government to finally make amends.
Father-of-three Alan Burgess, of Ipswich, was one of around 1,200 haemophiliacs – most of whom have died – who were co-infected with HIV and hepatitis C after being treated with contaminated blood products by the NHS during the 1970s and 80s.
During this period thousands of people, scores of them from this region, were poisoned through tainted blood products, many of which were commercially manufactured and sold, without safety checks, to the British Government from the United States and some of which came from the UK.
These products came from numerous high-risk sources, including prisons and drug addicts, but the Government continued to import them even after being given warnings they carried a risk of infection.
Mr Burgess, 57, said: “I lost my mind, I lost my job and nearly lost my family because of this and it’s time that someone was held accountable.
He has told how he was sitting in bed with his wife Denise one morning in 1985 when he received the news that would change their lives forever.
An innocuous brown envelope from the hospital contained a letter stating simply that he had been infected with a little-known virus called HTLV-3 – a disease that would soon spark fears of a global health crisis under its new name of HIV.
As well as those infected with HIV along with hep C, around 6,000 more contracted just hep C, which attacks and destroys the liver. Many more are believed to have been poisoned in the scandal, but don’t yet know it.
It is estimated the episode has cost around 2,000 lives so far. It is the 15th largest peacetime disaster in British history.
Yet, decades on from when the scandal first began, our special report has learned how the Government continues to let down sufferers and their families in many ways. This includes:
• a reluctance to properly investigate how the scandal was allowed to happen and hold those responsible to account
• a lack of suitable financial support, leaving many victims and their families struggling to cope
• failure to provide an acceptable one-off payment
• not providing the best drugs possible for sufferers, despite promises to the contrary
• uncertainty over the financial futures of the funding schemes set up to help
• a complex and demeaning support system.
Father-of-three Mr Burgess, who ran a successful business as a painter and decorator until HIV took hold, is calling for the Government to make amends for the 30 years of suffering that has afflicted him and thousands more. The disease has claimed many of his friends’ lives, cost him his business and almost destroyed his family.
He’s been told by doctors he would be dead within months and fed a cocktail of toxic drugs, which have left him with further health complaints.
In his search for justice he has attended Parliament more than a dozen times, presented evidence to inquiries and met with countless politicians.
But the 57-year-old said he has heard “so many empty promises over the years” that he still finds it hard to believe anything will be done.
“I don’t know what more I can do,” he said. “It feels like we are just fighting for nothing and I don’t want to waste any more of my life campaigning for justice that never arrives.
“I lost my mind, I lost my job and nearly lost my family because of this and it’s time that someone was held accountable.”
Mr Burgess was infected with HIV at Addenbrooke’s Hospital in Cambridge during treatment for an internal bleed suffered playing football in December 1982.
Diagnosed, but with little knowledge of the disease, he continued with his life as normal, even fathering a child with his wife, unaware of the risks posed to her and their child.
Thankfully neither mother, child or any other family members were infected.
By the late 80s, however, the disease began to impact on his health.
“I had to give the business up, and then I got really ill.
“Doctors told me that if I carried on the way I was I would be dead in six months, but the prognosis was I would probably be dead in two or three years anyway.
“I went away, made a will and sat down and expected to die.”
In 1991 Mr Burgess was dealt the second brutal blow – another batch of contaminated blood administered at some point over the past decade had also infected him with hep C.
By now he was taking up to 25 pills a day to fight the diseases, including AZT, a drug known for its severe side effects. “I was on all these drugs that were making me ill, I was having nightmares and my mental health was suffering,” he said.
“I thought everything was a problem, I was not nice to live with and I had a mental breakdown – I would have been quite happy to have died.”
Mr Burgess was admitted to St Clement’s Mental Hospital in Ipswich for a month’s treatment.
Returning home, things were no better. He suffered mood swings and would disappear without warning, worrying his wife and children, before eventually moving out of the family home.
“Because I was on my own, I had time to think,” he said.
“I went for counselling, and slowly got my life together. My mates were still dying but I could cope with it better and the drugs were easier to take.”
Mr Burgess moved back home and became active in the campaign for justice as a member of the Birchgrove Group and MacFarlane Trust – organisations set up to help haemophiliacs infected with contaminated blood.
But despite turning his life around, he still claims to face financial worries and concerns over changes to benefits.
He added: “All we want is to be taken out of benefits and charity and be offered the money that I would have been earning had I been able to keep working so that I can provide for my family.”
Mrs Burgess added: “We have spoken out now and agreed to be identified because we have done nothing wrong and none of this is our fault.”
Father’s ill-health took toll on daughter during teenage years
Alan and Denise Burgess’s daughter, Laura Lysons, 32, said her teenage years were the hardest.
She was told of her father’s illness aged 11 but had suspected something was wrong for much longer.
“My dad was starting to get a lot of illnesses and I didn’t see him very often because he was always in bed,” she said.
“I knew that something wasn’t right. I can’t really remember not knowing.”
At high school she said her father’s inability to work and the benefits they received aroused suspicion.
“There were stories going around that dad was a drug dealer – it seemed the only plausible explanation,” she added.
“We used to get free school meals, but I would never get them because I knew that if I did it would just mean more questions so I found it easier not to eat.”
Then, in her late teens, the worry of not knowing when her father might die led to drug-taking and self-harming.
“We didn’t know what was coming, mum and dad weren’t getting along, it all became too much and I ended up trying to commit suicide,” she said.
It was not until her early 20s, after she saw a counsellor, that her life turned a corner.
Now she wants to see justice for her father.
“I just want to see him happy,” she said.
“It breaks my heart to see my parents go through what they have to go through and it angers me. I think the Government think they can wait for them all to die.
“But we are still here and we will still fight.”
The Government’s pledge
Earlier this year David Cameron became the first prime minister to issue an apology to the victims of the contaminated blood scandal, stating that “to each and every one of those people I would like to say sorry on behalf of the Government for something that should not have happened”.
He also pledged an extra £25m for the next 12 months to be spent on setting up a better payment and support system for those affected.
However, campaigners are still waiting for that pledge to be realised.
While the government has no plans to launch a formal inquiry in this country, on conclusion of the Penrose Inquiry, held on behalf of Scottish victims, it pledged to study its findings closely and act accordingly.
Meanwhile, in a January select committee date, the House of Commons supported a motion to “further review the circumstances surrounding the passing of infection via blood products to those with haemophilia and others during the 1970s and 1980s”.
That same month an All-Party Parliamentary Group Inquiry made a series of recommendations designed to make the financial support system fairer.
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