Bereaved families who lost loved ones in the contaminated blood scandal say they have seen evidence that proves their relatives were being “used for research” without their knowledge and despite clinicians knowing the risks.
Historic notes in medical records found by campaigners are said to show that some patients being treated for the blood clotting disorder haemophilia in the 1970s and 1980s were given blood plasma treatment which doctors knew might be contaminated and infect them with hepatitis.
Clinicians involved in the treatment have maintained they wanted to study the links between the haemophilia treatment Factor VIII and the risk of infection.
Jason Evans, director of the campaign group Factor 8, believes that instead of stopping treatment, clinicians lobbied to continue trials, even after identifying the association between hepatitis and the treatment.
He has found notes alluding to the research in his own father’s medical records.
Mr Evans, whose father died in 1993 after being infected with both HIV and hepatitis C during the course of his treatment for haemophilia, said: “It is appalling that hundreds of people with haemophilia across the country were knowingly infected with lethal viruses under the guise of scientific research.
“These secret experiments, conducted without consent, show individuals were treated as mere test subjects, not human beings.
“The fact that this could happen on such a scale, over such a long period of time, is almost incomprehensible.”
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Documents – obtained through Freedom of Information requests and medical records provided by families – reveal a timeline of the trials, led by a senior medic who worked for the now defunct Public Health Laboratory Service, say campaigners.
Becka Pagliaro from Waterlooville, near Portsmouth, said she was “shocked” to find notes about the trials in her father’s patient notes.
Her father Neil King was co-infected with both HIV and hepatitis C while receiving treatment for haemophilia. He died in 1996 when he was 38 years old.
“When I got his medical records I saw he was part of this research which I know was something that he would not have agreed to, so that was done covertly,” Ms Pagliaro said.
“I was really shocked – I wondered first of all whether I had received someone else’s medical records because I could not believe what I was seeing.”
Janine Jones’ brother Mark Payton died when he was 41 after being co-infected with both hepatitis C and HIV.
“When I saw the research was on my brother’s records I thought: ‘What’s this?’ And after asking a few questions I didn’t get anywhere,” said the 59-year-old from Warwickshire.
“It was only the last few months that it really came to light – they were being used for research.”
Emma Frame, from South Shields, said that her father had never agreed to be part of studies but found multiple references to them in his medical records.
Ms Frame said: “I have all of his records which is where I came across these studies.
“There is no information other than this doctor’s name, a treatment and then a date. With my dad it was recorded several different times.
“It’s absolutely mind-blowing the information that is out there that has been hidden.”
Jeffrey Frame was co-infected with HIV and hepatitis C and died in 1991 when he was just 39.
Ms Frame said that in the mid 1990s she also discovered that the NHS had kept some of her father’s “samples”, which had not been discussed with the family.
“They still had actual physical samples of my dad who had died years previous,” she said.
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Tens of thousands of people were infected with contaminated blood through infected blood products or blood transfusions, largely between the 1970s and 1980s.
People were infected with hepatitis or HIV, and in some cases with both.
An estimated 3,000 people have died as a result, while those who survived have lived with life-long health implications.
Des Collins, senior partner of Collins Solicitors, which represents 1,500 victims and their families, said: “There is now overwhelming evidence that the NHS failed patients on a number of levels in the 70s and 80s and certainly in ways we find shocking and abhorrent.
“We are looking forward to Sir Brian Langstaff’s final Inquiry report in a few weeks’ time, which will lay out the wrongs perpetrated in comprehensive fashion.
“Not only will this reinforce the case for compensating victims and their families, but importantly will shine a light on the lessons to be learned so that mistakes of the past are never repeated again.”
The Infected Blood Inquiry will publish its final report on the scandal on 20 May.
Oleksandr Usyk has become the undisputed heavyweight champion of the world after defeating Tyson Fury in boxing’s biggest fight of the century.
The Ukrainian won on a split decision following the match in Saudi Arabia.
Usyk had 115-112 and 114-113 on two cards, while Fury took the other 114-113.
Fury disputed his loss after the match, saying: “I believe I won that fight. I believe he won a few rounds but I won more of them.
“Make no mistake I won that fight and I’ll be back.”
In response Usyk said he was “ready for a rematch”.
Fury came under early pressure, with Usyk taking the centre of the ring with an aggressive offensive from the start.
At one point Fury was pushed against the ropes and started laughing as Usyk applied pressure.
The “Gypsy King” looked relaxed as he moved around the ring in the early rounds and picked his shots.
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But after Usyk landed a right hook in the ninth round it looked as if Fury was in serious trouble. The Ukrainian followed up by unloading freely but somehow the bookmakers’ favourite stayed on his feet and was saved by the bell.
Last night, Fury weighed in at 262lbs (18st 10lbs) – nearly three stone heavier than Usyk, who clocked in at a career heaviest of 223lbs (15st 13lbs).
Fury refused to look at his opponent during a news conference on Thursday, but did not back down at the weigh-in last night, where the pair almost came to blows before being separated by their entourages.
Usyk arrived into the ring first, dressed as a Cossack warrior.
Fury entered to songs by Barry White and Bonnie Tyler, with the “Gypsy King” spending several minutes dancing on stage before the song changed to Holding Out For A Hero.
Anthony Joshua watched from the ringside, knowing he could meet the winner early next year.
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Thousands of homes have had their boiling water restrictions lifted after a water tank infected with cryptosporidium was drained and cleaned, South West Water has said.
About 16,000 households in the Brixham area of Devon were told to boil their drinking water following 46 confirmed cases of the disease.
On Saturday afternoon South West Water lifted the boiling restrictions for 14,500 homes after water quality monitoring results found no traces of cryptosporidium in the Alston supply area.
Cryptosporidiosis is caused by a tiny parasite and can lead to vomiting, stomach cramps and watery diarrhoea lasting about two weeks.
South West Water believes the parasite probably entered supplies through a damaged pipe in a field containing animal faeces.
A contaminated water tank at Hillhead reservoir, where cryptosporidium was detected, was drained overnight and “thoroughly cleaned” on Saturday, South West Water said.
One local resident said she knew of only four houses out of 21 in Raddicombe Close, on the outskirts of Brixham, which have not had at least one person fall ill with cryptosporidiosis.
The local MP has warned “heads are going to roll” over the incident.
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Tory MP Anthony Mangnall, whose constituency includes Brixham, told LBC: “This is such a serious matter that yes, I think heads are going to roll over this.”
He claimed the supplier had been too slow to issue its safety alert.
Mr Mangnall said: “From starting this week with a denial from South West Water that it was anything to do with them, delaying the fact that the boil water notice came in – meaning thousands of people used the water network – to then issuing it on Wednesday, and there are a lot of people who are very ill.”
He called it an “absolutely disastrous week” and said locals were furious.
South West Water has said it’s “deeply sorry” and that it’s been “working tirelessly” to identify the source of the problem and fix it.
Liberal Democrat leader Sir Ed Davey accused the government of not doing enough to hold water companies to account.
He told Sky News the firms were “putting profit over the environment, over public health” after multiple cases of sewage being released into rivers and seas.
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The confirmed cases of a waterborne disease caused by a parasite have more than doubled.
There are now 46 confirmed cases of cryptosporidiosis, a diarrhoeal illness, the UK Health Security Agency (UKHSA) has said – with more than 100 further people reporting similar symptoms in the Brixham area.
Other reported cases of diarrhoea and vomiting in residents and visitors to the south Devon town are also under investigation. Hundreds of locals have also reported feeling unwell over the last two weeks on social media.
MPs and South West Water officials have confirmed the parasite most likely entered water supplies through animal faeces, but an investigation is still ongoing.
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‘Cow faeces’ infected Devon water
The UKHSA first confirmed cases of the disease at around midday on Wednesday, while locals were initially told by South West Water that their tap water was uncontaminated and safe to drink.
But after testing supplies in the Hillhead reservoir, the water company found “small traces” of the parasite cryptosporidium – which causes cryptosporidiosis – and told residents in parts of Brixham and Alston to boil their drinking water on Wednesday.
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A total of 16,000 households and businesses in Brixham, Boohay, Kingswear, Roseland and North West Paignton were impacted and offered £15 compensation at first.
Over the next two days, South West Water apologised to those affected and increased the offer to £115. Amid the chaos, one primary school closed its doors on Thursday due to not having safe running drinking water.
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‘Very hard questions for water company’
Speaking to Sky News yesterday, South West Water’s chief customer officer Laura Flowerdew confirmed it was likely a broken air valve contaminated by animal faeces that had caused the outbreak.
However, she refused to give a timeframe on how long the incident would be ongoing – leaving thousands of residents facing an uncertain future.
Speaking on Friday at the University of Exeter, Health Secretary Victoria Atkins said there will be “very, very hard questions” for South West Water over the outbreak.
“At the moment I think we probably need to give them the space to conduct their investigation; we know that they have identified the source,” she said.
“The public will want to know how on earth that source happened, what was the chain of events that led to this, because of course we all understand the expectation that we all have when we turn our taps on is that [we get] clean drinking water and we want to be able to trust it.”
Totnes MP Anthony Mangnall also warned the boil notice could last “at least a further six or seven days” and called for more transparency.
Professor Paul Hunter, a specialist in medical microbiology at the University of East Anglia, told Sky News if the parasite was “a continuous thing” present in water supplies for a prolonged period, then “you’d expect to see more cases” for another two weeks.
It comes as hotel owners in the area told Sky News the outbreak has led to people cancelling their stay, while a head chef said “I can’t wash salad in the sink”.
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Stephen Colemansfield, owner of Redlands Guest House in Brixham, told Sky News the outbreak has “destroyed our business at the moment”.
“Our guests have cancelled because of the mixed messages that are being sent out by South West Water.”
Rob, head chef at the Steam Packet Inn in Kingswear near Dartmouth, also said his brother-in-law is one of the 46 confirmed cases of cryptosporidiosis and has been sick for two weeks.
The UKHSA is working with Torbay Council, South West Water, NHS Devon and the Environment Agency on the incident.