Father who contracted Hepatitis C from tainted blood medicine as a toddler breaks down at inquiry 

A father who was infected with Hepatitis C in 1992 as a toddler after being given tainted blood medication between 1981 and 1984, broke down in tears today as he told the inquiry into the scandal of the ‘shame he felt’ carrying the disease.

Matthew James Johnson told the ongoing Blood Inquiry in London his life had been ‘completely dismantled’ over something that could have been stopped and that he didn’t want anyone to go through the ‘horror’s his family had been through.

The 38-year-old also revealed that he has been left at risk of contracting neurological disease, Variant Creutzfeldt-Jakob Disease (vCJD), the incurable human form of ‘mad cow disease’ and tearfully spoke of his fear that his two young sons could see him ‘waste away’. 

Another victim, Jackie Britton, told the inquiry that finding out the news was like a ‘bombshell being dropped on you.’

The 57-year-old said people are still not being diagnosed because of the cost and that it ‘shouldn’t have been allowed to happen’. Jackie was given a blood transfusion after childbirth, which she thought was saving her life. But the contaminated blood infected her with HCV. 

Matthew was diagnosed with Haemophila B when he was just one, after his parents had taken him to the hospital after he fell out of his cot, his front two teeth coming through his top lip

Jacqueline Britton (left) with daughter Annaliese (right) after this afternoon's hearing in London

Jacqueline Britton (left) with daughter Annaliese (right) after this afternoon’s hearing in London

Matthew was diagnosed with Haemophila B when he was just one, after his parents had taken him to the hospital after he fell out of his cot, his front two teeth coming through his top lip. 

The condition meant that Matthew’s blood did not clot properly and he was treated on a regular basis with factor products, before being treated as a ‘guinea pig’ with different medications. 

Today Matthew says the treatment led him to having contracted Hepatitis C and further problems which were only addressed two years ago, when the Haemophilia society released a statement on their website saying there had been two sporadic cases of CJD (a rare blood disease) and Haemophilia.

Holding back the tears, he said: ‘That sent me over the edge. Because at that point I had a little boy who was my life and I didn’t want him to see his Dad waste away’.

The inquiry is chaired by former High Court judge Sir Brian Langstaff (pictured above) who has promised to put people at the heart of the probe

The inquiry is chaired by former High Court judge Sir Brian Langstaff (pictured above) who has promised to put people at the heart of the probe

A letter which was sent out to Matthew stated that there was no information available for products used on patients with Haemophilia

A letter which was sent out to Matthew stated that there was no information available for products used on patients with Haemophilia 

During the inquiry, Matthew highlighted how he felt guilt for his parents and family

During the inquiry, Matthew highlighted how he felt guilt for his parents and family

He said that everyday he lives with the fear that he may hay CDJ and that he is scared of ‘falling of balance’.

‘You think it’s starting and it’s horrible. I am anti depressant dependent, I can’t come off them and its had a huge impact on my life. 

‘Also for my parents, it’s not been easy’.

The inquiry is chaired by former High Court judge Sir Brian Langstaff who has promised to put people at the heart of the probe. 

Medical records were presented to the inquiry showing the different treatment Matthew had

Medical records were presented to the inquiry showing the different treatment Matthew had

The letter above, which confirms that Matthew did have Hep C, and that they had found it in a blood sample

The letter above, which confirms that Matthew did have Hep C, and that they had found it in a blood sample

In October 2004 it was revealed that Matthew had been exposed to two batches of the contaminated material

In October 2004 it was revealed that Matthew had been exposed to two batches of the contaminated material 

The contaminated blood scandal has been labelled the worst treatment disaster in the history of the NHS.

Jackie Britton (pictured above) was given a blood transfusion after giving birth

Jackie Britton (pictured above) was given a blood transfusion after giving birth

Thousands of patients were infected with HIV and hepatitis C via contaminated blood products in the 1970s and 1980s.

Two previous inquiries have been branded a whitewash by campaigners.

Also speaking at the inquiry today, Jackie Britton spoke of her ordeal after contracting a liver disease after a transfusion.

Eight days after giving birth to her daughter she had taken her to get registered. 

‘I got home had a bath and stood up and it was like a horror film. My husband just ran and got my mum and I had started hemorrhaging, the doctor came out and called an ambulance and I was rushed into hospital.’

Doctors operated and afterwards she was told she had a transfusion.

She said: ‘I was on my own groggy and looked at the doctor and said I was ok. He told me I had four units of blood and he said the only reason he stopped was because he thought he would perforate her uterus and that he was expecting me to haemorrhage again. He told me if that it happened I would have to have a full hysterectomy, I was just 21, he told me that with no one else in the room.’

Jackie Britton (pictured above) had been given little information about the risks of a blood transfusion

Jackie Britton (pictured above) had been given little information about the risks of a blood transfusion 

After this Jackie, from Hampshire, was given no information about transfusions. Over the course of her lifetime she had other procedures where she was not given adequate information about transfusions and the risks. 

In 2009 she had an operation to remove ovarian cysts which left her feeling unwell.

She visited a GP who organised blood tests which shows liver dysfunction, so more were taken.

Then in 2011 the GP phoned her at home and told her that there was a major problem with her liver and that they had tested for Hep C and it had come back positive. They informed her she would have to book her husband and daughter in for a test.

‘Family members were clear and I couldn’t have lived with myself.

‘After receiving an appointment I received no information about Hep C and the doctors apologised.

‘So I got on the internet and did some research myself and from what I read I thought I would have weeks to live.

Jacqueline Britton (Witness 2 for Friday 3rd May 2019) with daughter Annaliese(35)

Jacqueline Britton

After being diagnosed with the blood disease, Jackie (right) was told her husband and her daughter (pictured left with Jackie) would also have to be tested 

Old photos show Jackie as a young mother with her children, before she had several more procedures

Old photos show Jackie as a young mother with her children, before she had several more procedures

‘You don’t drop a bombshell on somebody and let them go home with nothing. You’re given this devastating news and there is nothing. You go home and in the early hours of the morning you are planning your funeral, you have no idea of what’s going to happen.’

Ms Britton told the Infected Blood Inquiry on Friday that despite repeatedly telling clinicians before undergoing medical procedures that she had been given a transfusion in the early 1980s she was not tested for hepatitis C until 2011, nearly 30 years after the initial transfusion.

She said: ‘I remember watching GMTV with my mum and saying to her that I know I had the transfusion in the at risk period.

‘But I have had so many operations, so many NHS staff with hands inside my stomach, if I ask for a test my doctor is going to think I am neurotic.

‘I assumed I was fine.’ 

Jackie said she wouldn't have been able to live with herself if her family members would have also had the disease

Jackie said she wouldn’t have been able to live with herself if her family members would have also had the disease

Ms Britton, a former nursery nurse, said she was ‘really angry’ by the delay in her diagnosis and added: ‘If they didn’t realise there were issues with the blood I can accept that.

‘If they didn’t know there were issues until after the transfusion date I can accept that.

‘What I cannot accept is they had numerous occasions to find me and give me treatment so I would not now be cirrhotic [sic].’ 

Ms Britton said the Government should accept liability for the ‘harm done and that continues to be done on their watch’.

She added: ‘My hopes for this inquiry is that at its conclusion it will be a fitting epitaph to our dead, no longer ignored, a written memorial to their bravery, tenacity – standing in demos terminally ill.

Speaking at the inquiry today, Jackie Britton described her ordeal after contracting a liver disease after a transfusion

Speaking at the inquiry today, Jackie Britton described her ordeal after contracting a liver disease after a transfusion

‘And to our living, the chance to live what lives they have left without the need of campaigning, fighting for treatment, begging for financial assistance. I, for one, am not dying quietly and I am not alone.

‘The powers that be created this murderous scandal. It is to them we seek justice and an honest apology that lasts more than 30 seconds and is not just lip service.’

Ms Britton said everyone should be offered the choice of being tested for hepatitis C so that they do not ‘die in ignorance’.

She added: ‘It’s finding people, offering them the choice.

‘Some people may not want to find out and live a nightmare but without the knowledge you can’t make informed choices.

‘If I’d had the knowledge I would have chosen to be tested, I would have chosen to have got earlier treatment, and all the time I was undiagnosed I was putting my family at risk unknowingly.’

The victims of the blood scandal: from left; Barbara Pantin,Mark Ellis,Ade Goodyear,Stephen Finney,Lee Stay,unamed,Lou Pantin,Mark Ward and Sue Gorman wearing the tie her campaigning husband Steve Dymond designed before his death at Christmas 3 years ago,outside the Infected Blood Inquiry

The victims of the blood scandal: from left; Barbara Pantin,Mark Ellis,Ade Goodyear,Stephen Finney,Lee Stay,unamed,Lou Pantin,Mark Ward and Sue Gorman wearing the tie her campaigning husband Steve Dymond designed before his death at Christmas 3 years ago,outside the Infected Blood Inquiry

Her fear of infecting her family, resonates with Matthew’s story, who during the inquiry highlighted how he felt guilt for his parents and family.

‘I have an amazing set of parents but what I have seen it do to them. I feel guilt – they have been beset by their own problems. 

‘I can’t imagine what my parents went through. The CJD thing was very difficult for me and when the society posted it on their site it wasn’t the most thought out thing to do.’

Matthew was diagnosed with Hep C at a young age and said that growing up with the condition, you are told my medical professionals that ‘it’s not a big deal’.

Sue Gorman and Mark Ward

Sue Gorman

Sue Gorman and Mark Ward (left) pictured outside the inquiry. Sue Gorman’s husband Steve Dymond died at 62 from a suspected liver-related death

Helen and Michael Colyer who have been campaigning in Norfolk for 25 years, pictured outside the inquiry today

Helen and Michael Colyer who have been campaigning in Norfolk for 25 years, pictured outside the inquiry today

Joan Edgington (left), witness 3 for Friday 3rd May 2019 with her husband (right)

Joan Edgington (left), witness 3 for Friday 3rd May 2019 with her husband (right)

‘I thought why me? But since then I have lost people close to our family that have been infected I feel why am I still deserving to be here?’

He said that many people who are aware of his condition often perceive that he is a drug user.

‘Back twenty/ thirty years ago people weren’t so forgiving. 

‘The evidence I am giving is true – it’s all been really painful and I want to thank my family for everything they have done for me.

‘I hope some good comes of this and I hope the people who are accountable are held to account. I don’t want another to die. We are a rich nation, people should not be put behind profit for pharmaceutical profit.

‘It breaks my heart, I’m lucky I’m here and I cleared Hep C. There are people who have lost people they love.’

As a youngster Matthew had been treated at a centre in Oxford , and for the first few years of his life, visits to the centre were a weekly occurrence.

He was given factor treatment, which was common for someone with his condition. 

Patients were told they could find out more about whether or not they had been infected, which Matthew chose to do

Patients were told they could find out more about whether or not they had been infected, which Matthew chose to do

Patients were written to regarding the donors who had provided plasma for clot factors

Patients were written to regarding the donors who had provided plasma for clot factors

There had been a discussion between doctors and his parents to prevent bleeding to have prophylaxis to stop you becoming sick in later life. 

Matthew was treated at home by his parents and with every new medication, he says the family were made aware of the risks, however, they were told that the products that infected him had been groundbreaking.

‘We were told they were clean and that I had to have them to prevent arthiritis.’

‘There was a discussion about Hep C and the nature of the risks but were just told it would be nothing more than a cold.

‘I think I was exposed to contaminated concentrates in 1981-1984 because the treatment improved 1985-1985, but the exact date can’t be proved.’

Matthew Johnson (pictured above) broke down today while giving evidence to the inquiry

Matthew Johnson (pictured above) broke down today while giving evidence to the inquiry

Matthew (pictured above) was comforted during the inquiry as he got emotional speaking about his family

Matthew (pictured above) was comforted during the inquiry as he got emotional speaking about his family

In his witness statement he said he may have been a PUP (previously untreated patient’.

‘I was very very young – if my parents were told the risk then they wouldn’t have given me the factor that caused so much damaged.

‘I’ve seen record which show various people knew the risk from 1979 and I was still given it.  I’d like the people to be held accountable for what they have put me and my family through

Witness Clair Walton arrives at the Infected Blood Inquiry with her lawyer yesterday. Claire said she had been told to keep the situation quiet

Witness Clair Walton arrives at the Infected Blood Inquiry with her lawyer yesterday. Claire said she had been told to keep the situation quiet 

‘Hand on my heart, my parents would not have given me that if they knew the risks.’

Matthews parents were told he had been infected with Hep C, and Matthew revealed that he didn’t know if his parents had given consent for him to even by tested for the disease.

‘Nothing suggests they were asked to give consent – took four requests to get this information and I only got it when my legal team intervened.

‘I was there every other week so my parents could have been told – I went there 15 times between two years.’

Matthew said there had been a delay on the information getting through to his parents and added that he feels angry for them.

‘I fell angry, upset, more so for my parents, they have a massive sense of guilt on them’

‘That delay causes me anger, for two obvious reasons, one that I wasn’t being treated properly and that there was a  risk of others being infected by me

‘Mum used to do my injections – what if she would have pricked herself? That risk was already there and I had that sense of shame. What if I would have affected my mum or sisters’.

Debra and husband Barrie Dennis outside the inquiry yesterday.  Barrie was infected in the early 80's while nurse wife Debra was undergoing IVF

Debra and husband Barrie Dennis outside the inquiry yesterday.  Barrie was infected in the early 80’s while nurse wife Debra was undergoing IVF

In 1994 there had been a discussion about Matthew receiving treatments which contained higher concentrates , but there was a delay in product.

When he wrote off for a risk assessment he was told he had been ‘exposed to two batches between 1995 and 1997’.

Mr Johnson added: ‘I got two hits, so from that obviously it caused serious concern and alarm.

Matthew said he found out that Welsh people could get treatment at any age, and his parent inquired about moving there to receive the treatment.

‘My parents asked if they moved to Wales then would I receive the treatment and they were told that if we did that we wouldn’t get it, as ‘that’s not how it works’. 

His parents received a letter of the risks of CJD which they hid from him and when he went back to the centre he was informed. 

‘When I got the letter I was angry – it could have been prevented – all completely preventable, I’ve seen people that have died. It’s massive mental hit on me.’ 

The centre said risk was minimal – I automatically though I was going to die. Growing up I never had an issue with liver issues and things like that, but with this I had seen people lose all  their functions and I couldn’t have that for me or my parents – I was convinced I was going to die.’   

At the end of the trial, Matthew was commended for his bravery and added: ‘I don’t want people to go through what we have gone through. I know the guilt they feel and the horror they feel and I don’t want them to go through that.’

After the inquiry hears from victims in central London, similar testimonies will take place over the coming months in Belfast, Leeds, Edinburgh and Cardiff. 

If you would like more information on the inquiry or if you need help and advice visit https://www.hcvjustice.co.uk/. 

What is hepatitis C and how can it be treated?

Hepatitis C is a viral infection that causes liver inflammation, sometimes leading to serious liver damage.

Today, chronic hepatitis C is usually curable with oral medications taken every day for two to six months.

However, about half of those infected with hepatitis C don’t know they’re infected, mainly because they have no symptoms, which can take decades to appear.

These include bleeding and bruising easily, fatigue, poor appetite, yellowing of the eyes and skin, dark colored urine and itchy skin. 

Hepatitis C spreads when blood contaminated with the virus enters the bloodstream of an uninfected person. 

Health care workers, people who have received blood transfusions before 1992, baby boomers born between 1945 and 1965, veterans and those who have been in prison are more at risk.

People who have received a piercing or tattoo in an unclean environment are also at risk, as are individuals who have injected or inhaled illicit drugs.  

 

 

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