24th Sep, 2018

HIV blood scandal inquiry welcomed by victims who share their stories

Laura Kearns 30th Aug, 2018

A BLOOD scandal which saw thousands of people across the country infected with HIV is ‘finally’ being subject to an inquiry some 30 years after the first cases were reported.

And the news has been welcomed by victims and their families in Warwickshire who have spoken to The Observer about how their lives have been affected.

Some 5,000 British haemophiliac patients – whose blood cannot clot – were infected with HIV, Hepatitis C, or both, when given contaminated blood products by the NHS between 1972 and 1985.

Blood was sourced from prisons in America and not screened correctly. It left thousands of men – who can only be affected by haemophilia – with long-term health problems and since then more than half have died.

The blood product, known as Factor VIII was hailed as a ‘wonder drug’ as haemophiliacs could take it straight out of the fridge and inject themselves with it to stop bleeding.

But one batch of Factor VIII would include the blood of up to 20,000 people.

The exact number affected in Warwickshire is not known – chiefly due to the ‘shame and stigmatisation’ which stopped victims coming forward.

A spokeswoman for campaign group Tainted Blood, which represents victims, said: “Because of the stigma of having haemophilia, HIV and hepatitis C, the true extent of the damage remains unknown and there has never been any attempt to find out the number of victims in each area.

“Being known to have haemophilia in the family has been enough to have people targeted with abuse.”

An inquiry into the scandal – which is known as the ‘worst treatment disaster in the history of the NHS’ – is set to be begin at the end of September. It will take between two to four years to complete.

Fred Paintin from Ilmington was a severe haemophiliac and was given the infected product as a treatment for a bleed. He did not discover until some years later that he had contracted Hepatitis C through the blood which also led to him developing liver cancer.

As a child he was known as ‘miracle boy’ after undergoing an operation to have his appendix removed at Warwick Hospital. Due to his health the routine operation – which doctors said usually took around ten minutes – took two-and-a-half hours and required a ‘live’ blood donation from a Warwick man.

The operation was even more worrying for Fred and his family as his 12-year-old brother Albert, also a haemophiliac, died on the operating table from blood loss while surgeons tried to repair his damaged elbow.

Fred’s health was a continuous source of problems throughout his life. His sister Dot recalls him wearing calipers and bandaging his legs every night as they would bruise so much just from walking throughout the day.

But this did not stop him taking on a job at the former Flower Brewery in Stratford and later the Hook Norton brewery in Oxfordshire – despite his health meaning he was unable to drink alcohol.

Dot said: “He never let haemophilia dictate who he was. He was very positive, the most positive person I have ever known. Fred just got on with it. ”

When he started taking the Factor VIII products – which help clot the blood – his wife Barbara ‘prophetically’ was concerned about its safety and called the laboratory in the USA where it was manufactured.

Fred’s daughter Louisa told the Observer: “My mum said that Factor VIII was promised to be the new wonder drug, which we had all been waiting for. She remembers calling the factory where it was manufactured to ask questions.

“Dad then received a call from the Oxford Haemophilia Centre asking why his wife had called the States ‘making trouble’.

“He calmly told Mum not to make a fuss. This would become dad’s mantra – ‘Don’t make a fuss’.

“I just wonder what he would think now after all this has come to light.

“Then I wonder if he knew all along, and was trying to keep us safe – I suspect the latter.”

Fred died at Ellen Badger Hospital in Shipston just days after his final wish, to see in the millennium. He was 57-years-old.

The Paintin family successfully managed to get ‘infected blood products’ recorded as his cause of death on his death certificate.

Louisa has since made it her mission to spread awareness about the blood scandal through one of her passions – baking. She regularly posts pictures of her bakes – which include cakes shaped like blood bags – to social media which inspire discussion.

She has also welcomed the announcement of a blood inquiry which is set to begin later this year, but says trauma of seeing her father suffer still affects her.

She said: “I haven’t suffered like those infected have, nowhere near, but I am affected.

“I have anger in me that will never dissipate. I trust no one, and question everything.

“It is with cautious optimism that I view this public inquiry. It is after all the government investigating its own. We again have to put our trust in those institutions, which have lied to us for so many years.

“My only hope is that times have changed.”

Matt Merry was told he was HIV positive when he was just 12-years-old.

The then Ashlawn School pupil from Rugby was told by his mum that he had already had the virus for four years after being given contaminated blood products for haemophilia.

But in the 1980s the illness was regarded as a short death sentence and Matt’s mum warned him not to tell anyone due to the stigma that came with having HIV.

He said: “It wasn’t really an option to let anyone know.

“It’s so lonely going through that and experiencing that on your own – not being able to talk to anyone about it or to discuss it.

“I guess I could have talked to my mum or dad or brother – but it’s almost like it was so upsetting at the time that I didn’t want to talk about it, because I knew I’d just break down in tears, so I just shut it away and got on with it.”

Thinking he had no future, Matt’s life quickly spiralled out of control and he turned to drugs.

He gave up on his education as he constantly believed he would not have long to live.

It wasn’t until he was 18 that he began telling his friends about the illness.

He also signed up to continue studying at Warwickshire College in Leamington, which he says was just an excuse to ‘muck around’.

But as his friends grew up Matt had a realisation.

“I’ve had this since I was eight-years-old, and I was always told I’d have two years to live. Well, what if it’s not two years? What if it’s longer?”

He decided he should concentrate on forging a career and signed up to a university course in Birmingham where he got a degree.

He continued being checked for CD4 cells, which are usually killed off by the HIV virus but they remained – and still remain – normal.

Matt, who is now a chartered surveyor living in London, told the Observer: “I was tested a couple of years ago to see if I had cleared the virus, because of my normal CD4 count, but I still do carry the virus. I am just in the extraordinarily lucky position where my body is somehow able to control the virus, without drugs – for the time being anyway.”

In 2008 he got married and had a son after the NHS paid for sperm washing, a form of assisted conception.

But when the couple decided they wanted a second child the health service refused to pay – despite his consultant pointing out he had contracted HIV through blood supplied by the NHS.

They later had their second son after paying privately, and Matt says becoming a father has made him realise the enormity of what happened to him.

He said: “I’m pleased with where my life is at the moment – I’ve got a brilliant family, a wonderful wife, two wonderful kids. I’ve got everything to be thankful for. But I shouldn’t have to be thankful for that.”

He has welcomed a public inquiry but says it is long overdue.

Matt said: “It’s about time the inquiry got underway. Every government since this scandal occurred has tried to avoid one even though several thousand people have died, and continue to die. I want the inquiry to provide accountability.”

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