Perry Evans, one of the first victims to give evidence to the Infected Blood Inquiry, died five weeks ago – too soon to see the damning report into the scandal.
His wife, Heather Evans, sat next to a picture of Perry as she listened to inquiry chair Sir Brian Langstaff read the key points from his findings on Monday.
The 59-year-old said it was “overwhelming” to see the culmination of years of campaigning without Perry, who was 62. “My feeling at the start of the day was just so gutted that Perry was missing it,” she told BBC Radio 4’s Today programme.
The government announced a wide-ranging compensation scheme for victims on Tuesday.
Speaking after the announcement, Heather told the BBC: “I’m just glad they’ve announced something.”
In particular, she said she was “hugely relieved” that people who lost children or parents to the scandal would receive compensation.
A public inquiry found authorities had exposed victims to unacceptable risks and covered up the NHS’s biggest treatment disaster.
Some 30,000 people were infected. Perry is one of around 3,000 who have died so far.
Sir Brian shared Perry’s story as he delivered his findings on Monday. An audible gasp rippled through the audience when he told them Perry had died so recently.
“That sigh went across the room,” said Heather, because the “love and solidarity” between infected blood campaigners had “brought us all together”.
Heather said that she and other campaigners felt “grateful” the report had been published. But she added that she was hesitant to say the battle was over.
“Why was this not announced a year ago?” she asked ahead of the government’s announcement on Tuesday.
She was not the only one asking questions of the government.
While some campaigners have praised the prime minister for apologising for the scandal on behalf of successive governments, others have criticised the government for waiting for the full report before setting up a full compensation scheme.
Heather said the government had learned nothing it did not already know a year ago. “And in that year, so many people have died. Including Perry.”
In 2022, an independent report by Sir Robert Francis recommended compensation for victims irrespective of the findings of the public inquiry.
The UK government said at the time that it accepted the moral case for compensation and made payments of £100,000 to 4,000 people who had been infected.
Sir Brian published an interim report into the scandal in April 2023. He recommended the government begin work on a compensation scheme that same year.
Labour MP Dame Diana Johnson, a long time campaigner on the scandal, said the government’s failure to provide compensation payments to victims following this interim report “added another layer of hurt”.
Greater Manchester Mayor Andy Burnham has called for people to be prosecuted for their role in the scandal.
The former health secretary told the BBC corporate manslaughter charges should be brought, and backed Sir Brian’s calls for civil servants to be subject to a “duty of candour” law, which would force them to “tell the truth at the first time of asking”.
Mr Burnham said this is the “only way to break the cycle” that has led to successive public scandals.
‘I’m so proud he saw our kids to adulthood’
Perry Evans met Heather in 1987, two years after he was diagnosed with HIV. He contracted the illness after he was given infected blood during treatment for haemophilia.
“We were told he had two or three years to live,” said Heather. “We were married for nearly 36 years.”
The couple were also told they would never have children, but they have a son, Isaac, now 22, and a daughter, Cerian, now 19.
“But there were huge difficulties along the way, huge health crises”, she explained. “And that’s part of the shock that he has gone, because so many things he rose above – time after time after time. So we are still shocked that he’s gone.”
Perry survived many complications stemming from infected blood.
He outlived his original three-year HIV prognosis, only to be diagnosed with HIV-related cancer in 2002.
He survived this illness only to fall into a coma, from which he was never expected to return, in 2008.
Again, he survived, but he suffered from a range of health problems related to HIV and Hepatitis C for the rest of his life.
“He did his absolute best to give us the best time,” said Heather. “In the last three years we’ve done some amazing things.”
Perry was “forever booking us really great concerts and gigs”, and the family went on “the best holidays we could do in the circumstances”.
Last November, Perry booked a wave of activities for Heather’s birthday. “We called it ‘Showvember’,” she said.
Heather says her husband “didn’t really contemplate” what his family would do after he died. “We’ve still got a ticket left for next April to see Peter Kay live,” she said.
“I’m so proud that he saw our kids into adulthood and he saw our daughter get into theatre school,” she said. “He would want them to thrive and fly and absolutely fly. That’s his legacy.”