Couple whose 10-year-old son contracted HIV and died after being given contaminated blood say they hope inquiry into ‘worst treatment scandal in NHS history‘ will bring them justice

Lee Turton, 10, died in January 1992 having been given Factor VIII protein from the age of one and subsequently diagnosed with HIV aged four

A couple whose 10-year-old son died after being given contaminated blood has said they hope an inquiry into the ‘worst treatment scandal in NHS history‘ will bring them justice.   

Around 4,800 people with haemophilia are believed to have been infected with hepatitis C or HIV in the 1970s and 1980s after receiving contaminated blood products from the NHS. 

More than 2,000 patients are believed to have died as a result, including those who suffered from the genetic disorder which affects the blood‘s ability to clot. Meaning patients sometimes need a blood transfusion. 

Today, as an inquiry into the scandal began, Denise and Colin Turton whose haemophilic 10-year-old son Lee died after contracting HIV through contaminated blood products, said they hoped some justice would be found. 

And it wasn‘t just those with haemophilia that suffered, thousands more may have received contaminated blood after being given transfusions following an operation or childbirth. 

Mr and Mrs Turton, who travelled to London from Bristol to watch the inquiry on Tuesday, said that Lee – who was diagnosed with severe haemophilia six months after his birth in 1981 – was given Factor VIII protein from the age of one then diagnosed with HIV aged four. 

After he died aged 10 in January 1992, the family said they discovered Lee had also contracted hepatitis C. 

Speaking after the inquiry today, which heard from victims of the blood contamination scandal, Mrs Turton said: ‘We hope to find the truth, get justice, find out who covered it up, why it was covered up, and prison would be nice for them.‘    

Mrs Turton said the family had been ‘stunned‘ when Lee was diagnosed with HIV.

She said they had repeatedly raised concerns that Factor VIII could be infected with HIV, but were told Lee‘s treatment was not imported.

She added: ‘Then they called us in to say they had done a blood test we didn‘t know about and he was HIV positive.‘

The family, which had been living in Nailsea in Somerset at the time, said their son had changed when he realised he was ill.

Mrs Turton added: ‘He was a happy little boy, very bright and intelligent, but afterwards when he realised he was ill he changed.

‘He was quite withdrawn, he knew there was a lot going on because he had a lot of problems with school.‘

Mrs Turton said that once parents found out Lee had HIV their son was shunned at school, leaving him no friends and eventually the family moved away.

She added: ‘He had no friends, he didn‘t get invited to things anymore.

‘We knew he had no friends at school because of his infection, so we decided we would move to give him a childhood where no one knew what was wrong with him.‘

But Lee‘s condition started to deteriorate in 1988, the couple said.

Mrs Turton added: ‘He lost his appetite, he lost weight, he was always ill – ulcers in his mouth.

‘He just wasn‘t a happy little boy anymore. He changed totally.‘ 

Derek Martindale was the first to speak today as a fresh inquiry into the infected blood scandal, and he revealed harrowing detail about how the use of contaminated blood by the NHS had affected him and his family. 

He told the inquiry in  that he was a severe haemophiliac who had been infected with HIV and hepatitis C through receiving blood products.

He was 23 when he was diagnosed with HIV in 1985 and given one year to live. 

Supported by his son as he gave his harrowing evidence, Mr Martindale broke down as he revealed he was told not to tell anyone about his HIV diagnosis, including his family. 

He also revealed how a long-term girlfriend had left him after he had told about his infection, because she ‘couldn‘t stand to watch me die‘. 

Mr Martindale said his brother Richard, also a severe haemophiliac, was also diagnosed with HIV after being given infected blood.

He told the inquiry his greatest regret was ‘not being able to support his brother‘ in the months before he died of AIDS aged just 23, in 1990. 

He added: ‘When you‘re young you‘re invincible; when you‘re 23 you‘re generally fit, but then you‘re told you have 12 months to live – it‘s very hard to comprehend, so there was the fear.

‘There was no future, the likelihood of getting married and having children was very unlikely.‘ 

Speaking about his brother, Mr Martindale added: ‘He was full of life, he was a crazy youngster, he was a haemophiliac. 

WOMAN INFORMED OF HEPATITIS C INFECTION IN ‘HALF-OPENED LETTER‘ 

A woman was informed she had hepatitis C in a ‘half-opened‘ letter, despite not even knowing she had been tested for the condition, the inquiry heard.

Dr Carole Anne Hill found out in January 2017 that she had hepatitis C, having become infected as a result of a blood transfusion she had in 1987.

She had menorrhagia at that time, suffering from heavy periods, and needed a blood transfusion urgently because she was becoming increasingly anaemic.

Dr Hill was ed in November 2016 about getting a blood test looking out for markers of gynaecological problems, and one of the tests screened for hepatitis C – although she did not know that at the time.

Asked if she was told she was going to be tested for the condition, she told the inquiry: ‘No, not at any time.‘

Talking about how she heard about her diagnosis, Dr Hill said: ‘By letter, which was half-opened and not sealed properly. I was cross about that.‘

In her statement, she describes the way the diagnosis was communicated as ‘entirely inappropriate‘, the inquiry heard.

Dr Hill said she wrote a letter about the way she was informed.

‘It seemed to me that the patient should be informed in advance of that testing and warned accordingly, and would he kindly not tell people by letter in future?‘ she said.

Dr Hill said she thinks people need to be ‘fully informed‘ about what they are being tested for, and said people should be informed of a diagnosis in person.

She described her treatment for hepatitis C as ‘almost like an out-of-body experience‘, adding: ‘It certainly does weird things to your head as well as your body.‘

Dr Hill said it was ‘a bit like walking through deep water‘, adding: ‘I can‘t really explain how it was but it was unbearable.‘

She said she responded quickly to the treatment and was clear of the virus after a month.

‘I was very lucky. I was one of the fortunate ones,‘ she said, adding that she felt ‘a bit fraudulent‘ about being at the inquiry.

‘He got a job as a painter and decorator so he spent half his days standing on a ladder – his haemophilia doctor was not very pleased about that.

‘He knew he was dying, he knew he had Aids and that he didn‘t have long to live and he just wanted to talk about that, talk about his fears, how scared he was.

‘But I couldn‘t, it was too close to home for me and I wasn‘t there for him, I wasn‘t there for him and three months later he died. 

‘It was the biggest regret of my life.‘

Mr Martindale said he had felt relationships had not been an option for him because he was expecting to die and sex was the main way his infection was spread.

He said when he told his future wife he had HIV and hepatitis C she had said, ‘is that it?‘

Mr Martindale added: ‘That was a wonderful response.‘

He told the inquiry the couple had agreed not to tell their son until he was an adult.

Mr Martindale said he became aware he had also been infected with hepatitis C in 1997.

He said there was ‘still a stigma‘ associated with HIV and hepatitis C, adding: ‘I think society needs to move on from that and I hope this helps.‘

At the end of Mr Martindale‘s evidence, people in the room stood and clapped.

Speaking after the session his son John-Paul, 26, said it was ‘very powerful‘ to see other people in the same situation at the hearing.

He added: ‘The most important thing is it is coming out in public and people can talk about it and people are being open and supportive.

‘They have had to fight the taboo for 30 years and it was a battle they should not have had to fight.

‘This is one of the biggest scandals in the UK, hopefully this will be a step change.‘

Mrs Martindale added: ‘I feel very emotional, it‘s a long-time coming and I think Derek wanted to do it for Richard and all those who we know who have died.‘

The inquiry will be ‘frightened of no-one‘, its chair said, as he thanked victims for their bravery.

Former High Court judge Sir Brian Langstaff promised to put people at the heart of the probe and said he has read many of the witness statements already, describing them as ‘harrowing‘ and ‘incredibly moving‘. 

Two previous inquiries have been branded a whitewash by campaigners.

Also giving evidence at the inquiry today was Perry Evans, from Winchester, was told he had HIV in 1985 and has suffered with health problems including hepatitis C, chest infections, pneumonia and non-Hodgkin lymphoma.    

The 57-year-old told the Infected Blood Inquiry he was so ill he arranged his funeral in hospital as he did not think he would make it out alive. And said that when he was given the HIV diagnosis, he felt his future dream of having a family had been dashed, as he was told his life expectancy was two to three years.

‘It is a very stark and bleak prognosis and there‘s nowhere to go,‘ he said.

The inquiry heard that in 2008 Mr Evans was placed in an induced coma and medics faced difficulties when they wanted to take him out of it.

‘I didn‘t want to come out of the induced coma, so then they started to get a bit worried and our own vicar, who‘s now a bishop actually, he came and visited and I had my funeral arranged,‘ Mr Evans told the inquiry.

It was put to Mr Evans that he was not expected to survive and he said: ‘No, no. I was missing the Olympics as well at the same time.‘

Haemophiliac who caught HIV from infected blood tells inquiry he was so ill he arranged his own funeral in hospital 

A man who contracted HIV has told the Infected Blood Inquiry he was so ill he arranged his funeral in hospital as he did not think he would make it out alive.

Perry Evans, 57, from Winchester, was diagnosed with mild haemophilia as a child and regularly received blood products.

He was told he had HIV in 1985 and has suffered with health problems including hepatitis C, chest infections, pneumonia and non-Hodgkin lymphoma.

Mr Evans told the inquiry that when he was given the HIV diagnosis, he felt his future dream of having a family had been dashed, as he was told his life expectancy was two to three years.

‘It is a very stark and bleak prognosis and there‘s nowhere to go,‘ he said.

The inquiry heard that in 2008 Mr Evans was placed in an induced coma and medics faced difficulties when they wanted to take him out of it.

‘I didn‘t want to come out of the induced coma, so then they started to get a bit worried and our own vicar, who‘s now a bishop actually, he came and visited and I had my funeral arranged,‘ Mr Evans told the inquiry.   

He said of his initial diagnosis: ‘I was left to my own devices to go home and absorb the information that I would die young.

‘I would suffer and die a horrible and painful death. The outlook was bleak and terminal.‘

Reflecting on his experience, Mr Evans said: ‘There is a definite impact and cost to your friends when you share stuff.

‘And whilst I am and many of you are the ones going through those illnesses and also those who are no longer here, there‘s a huge impact on family because they carry you.

‘But the focus is always on the patient, the person suffering, but I know I wouldn‘t be here without friends and family.‘ 

He spent quite a few weeks in hospital and had months of recovery.

‘I cried when I came out because I didn‘t think I would come out,‘ he said.

The inquiry heard that in his statement, Mr Evans said of his initial diagnosis: ‘I was left to my own devices to go home and absorb the information that I would die young.

‘I would suffer and die a horrible and painful death. The outlook was bleak and terminal.‘

Asked about the impact he felt his condition would have on his life, he told the inquiry: ‘So on relationships, it made me think that having relationships would be out of the question, certainly becoming a father would definitely be out of the question, and really it put a big question mark on what my life was going to be like.

‘Up until that point, you know, I had dreams of getting married, having a family, reaching retirement.

‘But once that news came through, all of those dreams were gone and the impact on my mother and my sister was, you know, sadness and, you know, especially for my mother who I think maybe in the haemophilia community, mums feel it a lot harder because they feel responsible for passing that gene down.‘

On one occasion, Heather, then his girlfriend, joined Mr Evans at the hospital to meet a consultant and a social worker.

Mr Evans said he thought it was a great opportunity for Heather to come and see what he has had to put up with through his life and meet the doctors.

He said they ‘grilled her‘ and raised ‘the consequences of what she was doing in marrying me and did she really, really want to go through with it, which was a little surprising to me and to Heather as well‘.

Mr Evans said he was ‘in shock‘ as he walked away from the hospital.

‘It was not a good experience,‘ he added.

The inquiry heard that he and Heather did indeed marry, and went on to have two children. 

Reflecting on his experience, Mr Evans said: ‘What it has done is actually sharpen my sense for life and relationships.

‘When you go through near death experiences, for me anyway, it kind of rebalances, it kind of puts things in a different perspective.

‘I tend not to worry so much about things I should worry about, I tend to worry more about people and whether I am being honest and true to them.‘

He added: ‘The other thing about emotional impact is for a while at the beginning of all of my illnesses or my infections we didn‘t share the news with many people because we didn‘t want to always be the people who had HIV.

‘We didn‘t want it to be the sole conversation that we had because that would be boring and that would be wearing and we hoped that we were a bit more interesting than that.‘ 

Another to speak at the inquiry today was Dr Carole Anne Hill, who found out in January 2017 that she had hepatitis C, having become infected as a result of a blood transfusion she had in 1987.  

She had menorrhagia at that time, suffering from heavy periods, and needed a blood transfusion urgently as she was becoming more and more anaemic.

Dr Hill was ed in November 2016 about getting a blood test looking out for markers of gynaecological problems, and one of the tests screened for hepatitis C – although she did not know that at the time.

A timeline of the contaminated blood scandal which began in the early-1970s

1972: NHS starts importing large batches of Factor VIII products from United States to help clot blood of haemophiliacs. 

1974: Some researchers warn that Factor VIII could be contaminated and spreading hepatitis.

Late-1970s: Patients continue to be given imported blood, with much of the plasma used to make the product coming from donors such as prison inmates, drug addicts and prostitutes.

1983: Governments in both the UK and the United States are told that Aids has been spread through blood products.

Mid-1980s: By now the blood was being heat-treated to kill viruses, but thousands of patients had already been infected. 

1991: Blood products are withdrawn from use. The government awards ex-gratia payments to haemophiliac victims threatening to sue. 

2007: Privately-funded inquiry into scandal set up by Lord Archer of Sandwell but it does not get offical status and relies on donations.

2008: Penrose Inquiry launched, but victims claim the seven-year investigation was a ‘whitewash‘. 

2017: Independent inquiry into contaminated blood scandal announced by Prime Minister Theresa May. 

April, 2019: Infected Blood Inquiry starts hearing evidence.

Asked if she was told she was going to be tested for the condition, she told the Infected Blood Inquiry: ‘No, not at any time.‘

Talking about how she heard about her diagnosis, Dr Hill said: ‘By letter, which was half-opened and not sealed properly.‘

She added: ‘I was cross about that.‘

In her statement, she describes the way the diagnosis was communicated as ‘entirely inappropriate‘, the inquiry heard.  

Dr Hill said she wrote a letter about the way she was informed.

‘It seemed to me that the patient should be informed in advance of that testing and warned accordingly, and would he kindly not tell people by letter in future?‘ she said.

Dr Hill said she thinks people need to be ‘fully informed‘ about what they are being tested for, and said people should be informed of a diagnosis in person.

She described her treatment for hepatitis C as ‘almost like an out-of-body experience‘, adding: ‘It certainly does weird things to your head as well as your body.‘

Dr Hill said it was ‘a bit like walking through deep water‘, adding: ‘I can‘t really explain how it was but it was unbearable.‘

She said she responded quickly to the treatment and was clear of the virus after a month.

‘I was very lucky. I was one of the fortunate ones,‘ she said, adding that she felt ‘a bit fraudulent‘ about being at the inquiry.  

The scale of the inquiry has been described as ‘unprecedented‘ by Jenni Richards QC, counsel to the inquiry.   

‘It‘s been referred to as the biggest public inquiry the United Kingdom has ever undertaken.‘

She said that so far the inquiry has received approximately 1,200 witness statements from individuals who who were infected or affected, adding that the inquiry expects to receive at least a further 1,200 statements over the coming months.

Ms Richards said it seems ‘likely‘ that there may have been potentially ‘many thousands of people‘ who remain unaware that they may have been infected as a result of the receipt of infected blood or infected blood products.

Inquiry chair Sir Brian thanked those who volunteered statements and told the packed hearing room: ‘I have already read a large number more than once, some a number of times.

‘Some are harrowing; some incredibly moving; some chillingly factual. All are valuable. There are more to come.

A scandal sparked with blood sold by US prisoners

The blood contamination scandal was sparked by tainted blood plasma products that were given to thousands of NHS patients including haemophiliacs or those needing transfusions.

A new treatment introduced in the early 1970s involved the use of clotting agent Factor VIII.

Since Britain was struggling to keep up with the demand, supplies were sourced from the US.

Much of the plasma used to make the product came from donors such as prison inmates, drug addicts and prostitutes – who sold blood which turned out to be infected.

By the mid-1980s, the blood was being heat-treated to kill viruses, but thousands of patients had already been infected.

Around 5,000 people with haemophilia and other blood disorders are thought to have been infected with HIV and hepatitis over a period of more than 20 years, according to the . Almost 3,000 of them have since died.

Prime Minister Theresa May announced in July last year that an inquiry would be held into the events over the two decades.

The announcement was welcomed at the time by campaigners, who have been pressing for years for an inquiry into the import of the clotting agent Factor VIII from the US

‘For many, making a statement has been, and for some it yet will be, an act of bravery, which I would like to acknowledge publicly here and now; it may have stirred up, and may yet stir up, distressing memories.

‘I understand some simply cannot bring themselves to make a statement because it is too much.‘

Sir Brian described Tuesday as a ‘significant‘ day for the inquiry and added: ‘At the preliminary hearings I set out the principles that were to guide this inquiry.

‘They were, first and foremost, putting people at its heart, UK-wide; being as quick as reasonable thoroughness permits; paying proper respect to a person‘s right to be heard; being as open and transparent as it is legally possible to be; being independent of Government, and frightened of no one in the conclusions it draws.‘

Sir Brian said the inquiry would recognise that people have different perspectives.

‘It cannot be just a favoured few, or for that matter a favoured many, who are at its heart.

‘Those wishing to attribute blame; those wishing to escape blame; those who wish neither, but just seek to understand why what happened did, or to explain their actions; those who received blood products, those who were transfused with infected blood; those who were patients, those who were doctors: all are people, and all are entitled to be heard with respect; and I would ask participants to respect that entitlement, however unpalatable they may find some of the ideas, or explanations, or accusations being expressed.‘ he said.

After the inquiry hears from victims in central London, there will be similar testimonies take place over the coming months in Belfast, Leeds, Edinburgh and Cardiff. It is expected to last up to three years. 

Victims of NHS contaminated blood scandal share their stories: First day of Infected Blood Inquiry gets underway in London

Victims of contaminated blood issued by the NHS have been sharing their harrowing stories, as a fresh public inquiry into the scandal gets underway in London. 

Thousands are believed to have been affected by the contaminated blood products, including around 4,800 haemophiliacs who were infected with hepatitis C or HIV.

A public inquiry today included harrowing evidence from a man who watched his own brother die and another who planned their own funeral after becoming severely ill from the blood. 

Derek and Richard Martindale: Watched brother ‘waste away‘ after Aids diagnosis 

Derek Martindale was 23 when he was diagnosed with HIV in 1985 and was given just one year to live. 

He said he had been advised not to tell anyone, even his family, because of the stigma surrounding the illness at that time.

While his brother Richard, who had severe haemophilia as well, also contracted the virus and died aged 23 in 1990.   

Sitting next to his adult son, Mr Martindale said his brother had been ‘full of life‘ before contracting HIV and had been a painter and decorator.   

Mr Martindale said he had returned to Yorkshire for his sister‘s wedding when his brother had wanted to speak about his illness.

With his voice often breaking, he added: ‘He was very ill at the time, he was wasting away in a sense.

‘He knew he was dying, he knew he had Aids and that he didn‘t have long to live and he just wanted to talk about that, talk about his fears, how scared he was.‘

Perry Evans: Arranged funeral in hospital following ‘bleak prognosis‘  

Perry Evans, 57, from Winchester, was diagnosed with mild haemophilia as a child and regularly received blood products.

He was told he had HIV in 1985 and has suffered with health problems including hepatitis C, chest infections, pneumonia and non-Hodgkin lymphoma.

Mr Evans told the inquiry that when he was given the HIV diagnosis, he felt his future dream of having a family had been dashed, as he was told his life expectancy was two to three years.   

The inquiry heard that in 2008 Mr Evans was placed in an induced coma and medics faced difficulties when they wanted to take him out of it.

‘I didn‘t want to come out of the induced coma, so then they started to get a bit worried and our own vicar, who‘s now a bishop actually, he came and visited and I had my funeral arranged,‘ Mr Evans told the inquiry.

Dr Carole Anne Hill: Informed of hepatitis C in ‘half-opened‘ letter 

Dr Carole Anne Hill found out in January 2017 that she had hepatitis C, having become infected as a result of a blood transfusion she had in 1987.

She had menorrhagia at that time, suffering from heavy periods, and needed a blood transfusion urgently as she was becoming more and more anaemic.

Dr Hill was ed in November 2016 about getting a blood test looking out for markers of gynaecological problems, and one of the tests screened for hepatitis C – although she did not know that at the time.  

Talking about how she heard about her diagnosis, Dr Hill said: ‘By letter, which was half-opened and not sealed properly.‘ She added: ‘I was cross about that.‘

In her statement, she describes the way the diagnosis was communicated as ‘entirely inappropriate‘, the inquiry heard.

She responded quickly to treatment and was clear of the virus after a month. 

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