‘They’ve taken my life away and there is no one there to say sorry’ - time is running out for victims of contaminated blood scandal
- Credit: Sonya Duncan
Their lives were ruined when the NHS gave them blood infected with deadly diseases. And time is running out for the victims to get answers.
'It will get me in the end but I want people to be accountable for what has happened,' says Michelle Tolley.
A fear of the mother-of-four from Sparham near Dereham - and thousands like her who were given contaminated blood products by the NHS in the 70s, 80s and early 1990s - is that they will not get answers about who was really responsible for the biggest scandal in the history of the NHS before their health worsens.
More than 2,000 people died and thousands more were infected when they were given blood products containing Hepatitis C and the Aids virus HIV.
Thousands of haemophiliacs were treated with a product called Factor VIII, extracted from blood plasma donated by high-risk sources, such as US prisoners and drug users.
You may also want to watch:
By the early 1970s hepatitis was known to be potentially fatal and by 1983 the risk of HIV infection was known and yet patients were not told of the risk.
They continued to be given Factor VIII.
- 1 Revealed: The most expensive towns to buy a home in Norfolk
- 2 Couple fined £400 for digging up 8,000 Norfolk bluebells
- 3 Hundreds more trees on route of Norwich NDR have died
- 4 BBC Autumnwatch returns to Norfolk for another season
- 5 950-home bid takes step forward after £7m developer contribution agreed
- 6 What might happen to former Debenhams store in city centre?
- 7 'I remember shutting down' - Singer on cancer diagnosis at Norfolk hospital
- 8 Woman left 'penniless' while waiting five weeks for first pension payment
- 9 What does the ice-cream man do during winter?
- 10 Power cut hits Norwich city centre
The victims are still calling for a new inquiry into what happened, despite Government apologies, compensation and a previous inquiry in 2009.
Their case has been boosted by Labour's former health secretary Andy Burnham who told Parliament in April that he had evidence of a 'criminal cover-up on an industrial scale' and called for a 'Hillsborough-style' inquiry.
Then on Wednesday night, BBC's Panorama programme also investigated, publishing documents showing that doctors and NHS leaders were warned of the dangers of Factor VIII.
One of those infected was Bob Brennan from Mill Road in Thompson, near Watton, who has liver cancer.
He got hepatitis C through a blood transfusion in Barts Hospital, London, in 1988 and said he has recently been given three to six months to live by doctors.
He backed calls for a fresh inquiry.
'No one has put their hand up and taken responsibility for it,' he said. 'Why have they left it so long?'
The 64-year-old former manager at Lings Motor Group found out five years ago he had Hep C and received £70,000 in compensation. But that has not diminished his anger. 'They have taken my life away and no one is there to say sorry,' he said.
'I'm living from day to day. It is very upsetting. My wife, three children and four grandchildren are all affected. I'm going to miss my grandchildren growing up. It was heartbreaking getting a will done.'
One of those a new inquiry is already too late for is Annie Walker who died aged 62 in March last year at Priscilla Bacon Lodge in Norwich.
She contracted hep C from a blood transfusion.
Speaking to his newspaper before her death, she accused the government of 'waiting for us to die so they don't have to pay the money out'.
Michelle Tolley, 52, whose story was shown on Panorama, said: 'I will not stop fighting until there is some sort of inquiry. 'We want justice.'
She had to stop work at Tesco in Drayton and Swaffham in 2015 after being diagnosed with Hep C - 28 years after being infected through a blood transfusion while giving birth in 1987.
'I will never get back to work,' she said. 'It affects all aspect of life. It is like it's stolen my life.'
Haemophiliac Alan Kirkham, 69, from Norwich who has Hepatitis C, wants to see a new inquiry but does not hold out much hope.
'The trouble is nobody in Government really cares about this,' he said. 'The last thing they want to do is set up an inquiry.
'They know full well there was a massive risk and nobody told us - I didn't used to believe it, but it's becoming increasingly clear from documents that they knew that the risk was there.'
Some families are now taking matters into their own hands.
Jason Evans, whose dad died when he was four after being infected with HIV through being given Factor VIII for his haemophilia, is taking legal action.
Collins Solicitors, acting for Mr Evans, said they believe that new evidence has been uncovered shedding light on the scandal and the efforts made by the Department of Health to keep matters under wraps.
Solicitor Des Collins said: 'This will be the first direct challenge of its type and throughout our aim will be to support and represent families affected by this scandal.
'Ongoing research aims to deliver the truth to both families and the public and provide dignity and fairness to those who have suffered.'
Andy Evans, chairman of campaign group, TaintedBlood, said evidence showed 'criminal negligence and a widespread cover-up'.
•'Inquiry would be lengthy and expensive'
Should a new inquiry be held into this dark chapter of the NHS' history? Many victims think it should but the Government has resisted their calls.
Conservative prospective parliamentary candidate for Norwich North Chloe Smith, who has campaigned on behalf of victims, said: 'I do not think it is wise to hold a public enquiry as these are lengthy and expensive, and any money is far better spent on practically helping the victims.
'After several examinations of this scandalous tragedy over the years, we know enough of what happened, and the previous Prime Minister apologised on behalf of successive governments, so I don't think there is more that any fresh enquiry could usefully add.
'Very sadly, some victims like my former constituent Annie Walker have passed away, and there is no time for further delay. What's needed now is to get on with the new compensation scheme which I believe will be supportive to victims, including many who had not received anything under old schemes.'
There have been two inquiries so far - the Archer inquiry that reported in 2009, and an inquiry in Scotland chaired by Lord Penrose, which reported in 2015.
The Department of Health said: 'This was an unprecedented tragedy, and we are continuing to work closely with those affected to make sure the right support is in place for them.
'We have more than doubled our annual spend on payments to people affected since 2015, committing an additional £125m, as well as providing an annual payment to all infected individuals. This is significantly more than any previous government has provided for those affected by this tragedy.
'We will continue to listen and are currently consulting on new measures to extend the group of individuals who benefit from higher annual payments.'
•What was the scandal?
During the 1970s and 1980s thousands of haemophiliacs in Britain were treated with a product called Factor VIII, extracted from blood plasma donated by high-risk sources like prisoners and drug users in the USA.
It is estimated that approximately 4,670 haemophiliacs were infected with Hepatitis C whilst 1,243 also contracted HIV.
It had long been known that there was a risk of infection to haemophiliacs from blood products, but doctors told Panorama that these events should not be judged with the benefit of hindsight.
When AIDS first emerged, it was unclear what caused it and the HIV virus was only identified in April 1984.
The Hepatitis C virus was not identified until 1988 and tests were not developed until later.
'We understood there were risks,' Dr Brian Colvin, the director of the Haemophilia Centre at the Royal London Hospital from 1977-2007 told Panorama, 'But what we didn't understand was the magnitude of what was about to happen.'