A Devon boy with HIV and his sister’s fight for justice

The only wish twin sisters Meg Parsons and Liz Gardner had growing up on the East Devon coast was that their big brother wouldn’t die.

Rob Gibbs was diagnosed with HIV at the age of 14 after his haemophilia, a rare blood clotting disorder, was treated by the NHS with contaminated blood plasma.

He died of AIDS at the age of 21, cared for in his final weeks by the siblings who had longed for his survival.

Ms Parsons said: “If you have childhood trauma it will stay with you throughout your adult life.

“I want to know the truth.”

More than 30,000 people in Britain became infected with HIV and Hepatitis C after receiving contaminated blood products in the 1970s and 1980s.

Ms Parsons and Ms Gardner, now 51 and still living in Devon, are among those campaigning for compensation.

Diagnosed with haemophilia at the age of two, Mr Gibbs was initially treated with cryoprecipitate, made from blood plasma from one donor and administered in hospital, Ms Parsons told the BBC.

In the 1970s, a new treatment factor VIII became available to replace the missing clotting agents, made by pooling plasma from multiple donors and imported from America.

It could “be administered at home”, Ms Parsons said, which was “revolutionary” for patients like Rob – who just wanted to “live a normal life”.

But entire batches were contaminated with deadly viruses.

The Infected Blood Study estimates that 1,250 people with bleeding disorders in Britain have developed both HIV and Hepatitis C as a result, including 380 children.

In October 1984, at the age of 14, a blood test, which Ms. Parsons said was non-consensual, showed that Mr. Gibbs had HIV.

A counselor delayed telling the family and it was only six months later, during a routine appointment, that Mr Gibbs learned of his diagnosis.

It was thought he probably contracted the virus around the age of nine.

Only later did they find out that he also had Hepatitis C.

For the family, including the 12-year-old twins, the devastating diagnosis and its delay were “traumatic.”

Mrs Parsons said she remembered being “absolutely stunned” that their brother had a “terminal illness with no cure”.

They hid the truth from their friends, she said, adding: “We were not given any kind of guidance.

“It was just a terrible, terrible time.

“My mother administered his injections at home.

“We lived together as a family… we were in potential danger at that time.”

The government took out an ad featuring a gravestone to raise awareness of the disease, Ms. Parsons said, and when it appeared on television the family would sit “in silence.”

She added: “We never discussed as a family what happened. It was just way too painful.

“We went on holiday a lot and made a lot of beautiful memories and things.

“My school friends didn’t know it, but I started having nightmares.

“My only wish as a child was that Rob wouldn’t die.”

Mrs. Gardner, Mrs. Parsons’ twin sister, said it wasn’t until years later that they realized that during each family roast, when they handed over the wishbone, they were silently praying for the same thing.

“That Rob doesn’t get AIDS, and that he doesn’t die,” she added.

At age 17, and after a cancer diagnosis revealed he had AIDS, Mr. Gibbs’ condition worsened, Ms. Parsons said.

He died at home in 1991, three days before the twins’ 19th birthday, with the sisters caring for him in his final weeks.

“There was no palliative care, there was no guidance,” Ms Parsons added.

Rob was “at peace” when he died, his sisters said, as they selected meaningful songs for his own funeral and told them to “live their lives to the fullest.”

“But he thought he was just unlucky, he never realized the magnitude of what had happened,” Ms Parsons added.

Then, the sisters said, they returned to college with the loss of their brother “deeply buried.”

Ms Gardner added: ‘It was only when the investigation was opened that we started to find out the numbers and the scale.

“It was almost like a second shock wave to find out.”

She said they also learned that the risks surrounding imported blood products were known – and they were administered anyway.

Ms Gardner added: “The NHS sent mums away with bottles to put in the fridge and inject their children.

“I can imagine Rob getting an injection at the kitchen table, and now we know what we witnessed.

“My son is about to turn 18, the age Robert was when he first started showing signs of HIV developing into AIDS.

“Every government has set this can aside.”

In 1991, when her brother died, the family received £40,000 from the government and were told at the time they could not pursue further legal proceedings, Ms Parsons said.

“The whole scandal has just been so poorly handled by medical staff, hospitals, haemophilia centers and the government. It’s just absolutely outrageous.

“This is a tragedy that could have been prevented.”

A government spokesperson said: “This was a terrible tragedy and our thoughts remain with all those affected.

“We are clear that there must be justice for the victims and have already accepted the moral pleas for compensation.

“This concerns a range of extremely complex issues, and it is right that we take full account of the needs of the community and the far-reaching impact this scandal has had on their lives.

“The government will inform Parliament of the next steps through an oral statement within 25 working days of the publication of the final report of the inquiry.”