Suzanne Morgan will never forget the day her mother died.
asserted
mother → forget → day
It was nine months after she had gone into hospital with gallstones, where she received a routine blood transfusion.
asserted
she → go → transfusion
“She went downhill rapidly,” Morgan recalled.
asserted
Morgan → go → ?
Her mother haemorrhaged in her liver, and the next day she was dead.
asserted
she → haemorrhage → liver
The family were astonished to be told that she had Hepatitis C, and doubly shocked to learn that they couldn’t see her because her body was sealed due to contagion risk, leading them to suspect she was HIV positive.
asserted
she → astonish → them
Morgan, who was pregnant at the time, said: “I went into full-blown miscarriage.
asserted
I → say → miscarriage
That was 35 years ago, and the family now know Morgan’s mother died because she was given infected blood.
asserted
she → know → blood
Yet Morgan has found herself forced to “keep reliving” the horror through the infected blood compensation scheme.
asserted
herself → find → scheme
Like many other victims of the scandal and their families, she has been asked to dig out decades-old medical records to prove she qualifies, despite the public inquiry’s recommendations that eligibility be determined “on the balance of probability”.
“I have been everywhere to try and get medical notes of any sort.
asserted
I → ask → sort
I cannot get them,” said Morgan.
asserted
Morgan → get → them
Infected blood campaigners who spoke to the Guardian shared their fury that thousands like Morgan face being locked out of the Infected Blood Compensation Authority (IBCA) payment scheme due to its stringent approach.
asserted
thousands → speak → approach
Rachel Halford, the chief executive of the Hepatitis C Trust, said this was “placing an intolerable burden on people who have already endured decades of injustice”.
asserted
who → say → injustice
Victims and bereaved families had been asked to prove “even the most basic of things”, such as whether they lived with their deceased spouses or siblings, she added.
asserted
she → bereave → spouses
Some have had to show old school records, tenancy agreements, utility bills or family photos.
asserted
Some → have → records
“People feel they are being treated as potential fraudsters rather than victims of one of the greatest scandals in our history,” said Halford, adding that there have been complaints of unfairness after different compensation awards for people with similar experiences.
asserted
Halford → feel → experiences
Halford said the community hoped that Andy Burnham, who has long campaigned for victims of the infected blood scandal to receive justice, would offer his support.
asserted
victims → say → support
“As prime minister, we need him to live up to that reputation and the promises he has made,” she Halford.
asserted
he → need → reputation
Yet Rosie McKearney, a policy specialist at the Hepatitis C Trust, said the community was “shocked” that Burnham had moved responsibility for the scandal from a cabinet-level secretary of state to a junior minister.
asserted
Burnham → say → minister
Research from the Haemophilia Society suggests that two years since the IBCA’s inception just 15% of projected compensation claims have been dealt with.
uncertain
% → suggest → claims
In a letter sent to the IBCA’s chief executive, David Foley, the campaigners said they were “concerned and angry at the lack of progress”, especially its “unreasonable and sometimes impossible bureaucratic demands”.
asserted
they → send → progress
The Haemophilia Society is calling for regulatory change to shift the burden of evidence from applicants to the state, meaning that all applicants with a bleeding disorder would be entitled to compensation unless proved otherwise.
asserted
applicants → call → compensation
Kate Burt, its chief executive, said that the current system was “putting haemophilia treatment centres under intolerable pressure”, with staff “asked to sift through patients’ medical notes to find evidence”, knowing that errors could cost the applicant thousands of pounds.
“This is highly technical work, relying on expert knowledge to find fragments of crucial information, yet centres are expected to fund this themselves,” she said, adding that one consultant told her they work unpaid on Saturdays to answer the IBCA’s inquiries.
uncertain
they → say → inquiries
Charlotte Evans, a lawyer at Leigh Day who is representing several victims and their families in their IBCA applications, said “the balance of probabilities” was the standard of proof for medical negligence claims.
uncertain
balance → represent → claims
She said it represented a comparatively lower threshold, which considers a risky procedure that took place at the same time as infected blood was used as indicative that a blood product had been administered.
asserted
product → say → blood
Instead of assessing all the available evidence to build up a picture of what most likely happened, applicants are being asked to prove beyond reasonable doubt that they received a specific blood product.
asserted
they → assess → product
“The scheme is supposed to provide a simpler process,” she said, adding that although the government and the IBCA had an obligation to ensure taxpayers’ money was properly spent, “the question is whether those obligations, and IBCA’s understanding of the same, go beyond what the regulations actually require”.
asserted
regulations → suppose → what
The reasons for this disconnect remained unclear, she said.
uncertain
she → remain → disconnect
“It may be that certain individuals [assessing claims] haven’t been given the appropriate guidance or training.”
uncertain
individuals → assess → guidance
Lynne Kelly, the chair of Haemophilia Wales, observed a “tick box” approach from the claims managers she had met.
uncertain
she → observe → managers
“The Cabinet Office is completely controlling the Infected Blood Compensation Authority scheme.
asserted
Office → control → scheme
It’s meant to be an independent, arm’s length body,” she said, adding that she believed the eligibility criteria was intended to “minimise the amount of compensation paid out”.
asserted
criteria → mean → compensation
For Zena Whittaker, that extra compensation would both give closure and a comfortable retirement, enabling her to stop worrying about putting the heating on.
She is still haunted by the memory of asking a doctor how much longer her son Andrew had to live.
asserted
son → give → doctor
He replied: “We don’t know, because it depends whether the Hep C takes him first, or the Aids.”
asserted
C → reply → him
As a haemophiliac, Andrew received multiple blood transfusions, making it more likely than not that he also had hepatitis C.
asserted
he → receive → transfusions
Yet medical records were destroyed when his hospital merged with another.
asserted
hospital → destroy → another
“It’s just coming up to the anniversary [of his death], which makes everything raw,” Whittaker said.
asserted
Whittaker → come → death
“It’s 31 years since he died and it brought it all back again.”
asserted
it → ’ → it
Luke O’Shea is also struggling with a bureaucratic nightmare.
asserted
O’Shea → struggle → nightmare
He was given an infected clotting product as a three-year-old, but because he was not given a liver biopsy due to the risk of bleeding for haemophiliacs, he is unable to prove how bad his liver damage was, resulting in a shortfall in compensation he estimates at up to £1m.
“I wasn’t told I had hepatitis C until I was 15.
asserted
I → give → C
So just as life was beginning to open up, I was suddenly told what had already been done to it,” he said.
asserted
he → begin → it
…and 8 more, not listed.
The Aporia
