Day 21 - Infected Blood Inquiry Hearings - Leeds

We have nothing but admiration for the people that give testimonies and evidence and those attending the hearings to support others, or who have themselves been affected by this, directly or indirectly.  

We will continue to do all that we can as both core participants in the Inquiry and as the national charity for people with hepatitis C, help them get the justice they all deserve.

 

Mr M

Mr M had suffered with haemophilia from a young age alongside his older brother, which created a strong bond between them.He talked about what it was like as a child to have haemophilia and how it had consisted of many hospital visits.  One thing that stuck out was how he said one of his doctors referred to his blood transfusion as “jungle juice” when he was younger.  

He also explained how he had trained to inject himself on an orange enabling him to administer blood transfusions himself at home. How they would at first build the kits from equipment set to him but later on, that kits then came already made up.  He spoke about in the early days it was rationed out, but later was readily available. 

His mum was advised to watch program around a mystery disease.  It talked about how it had started in Haiti/the Caribbean and was found in drug users in America and then amongst the gay community and he thought “what has got to do with me” but then it was found in haemophiliacs in America and the UK.  

He then took this to his medical team who told him to “calm down and to carry on with his life as normal” regarding his haemophilia.  He stopped having the treatment for around 18 months, but when he attended the hospital again there was more talk of having nothing to worry about around his concerns and that they would test him. In fact he came out positive for HIV, as did his brother,  but were advised that it was “only antibodies” and told that, that was a good thing and that we had only been exposed to the virus and were immune and clear of the virus. 

He then talked about the test being wrong and the doctor telling him he now had HIV but still didn’t know what it was.He was left unclear as to what was in store for him and his brother in regard to their health.A couple of years later he asked a consultant if HIV was going to be fatal and his reply was” yes”. 

Mr M then said that after that meeting with the medical team he never saw them again and was moved to a different part of the hospital with a new consultant.  When he asked questions about HIV he was told there was no treatment, no cure and he had around 2 years to live. To this day, he always has in mind he has 2 years to live.He described his condition as carrying a bubble round that you couldn’t risk anyone coming in a kind of invisible space suit.He then went on to be diagnosed with hep C a few years later.  He didn’t feel any ill effects from this, but the 9 month interferon treatment he took for it caused side effects. He was cleared of hep C after this.

He then went on to describe the HIV medication in the 90s that made him ill and also he wasn’t sure if it caused him other problems around anaphylactic shock to insects and other allergies. And to this day suffers with peripheral neuropathy in his hands and feet and in his words it is very painful and he is confined to his house most of the time and his life is run from his chair which he gathers the things he needs for the day around him

He has suffered with 3 psychological breakdowns over the years and described the 2000’s as being a bad decade for him. He was taken off AZT treatment for his HIV treatment after around 5 years and that it had caused problems with his physical health.  He was off medication for two and half years  and going for regular check-ups and was therefore transferred from the Haemophilia department to a Sexual Health department as a result.

His brother later died as a result of his contracting HIV.He described the impact it had on life insurance when he and his brother had run their own business, and that they found a way round it with their company being able to take out work place life insurance - the insurance company not know they had two HIV patients on this. 

He wasn’t able to access services that were set up to support people and how these had failed him and how he had had to jump through hoops to gain financial support for the illnesses that had come from the infected blood he had received. Mr M talked about the lack of proper financial support and how his wife’s income had affected how much money he was awarded for support. 

He closed with the following statement:

It should be compensation.It should be sorted out.  We shouldn't be in this situation. It should be a draw.  The war should end.  I don't know what it is they're afraid of.  None of us know what it is they're afraid of, but somebody is holding out and we don't know why.  How deep it goes, who is being protected, why they are being protected we don't know.

"So there ought to be, you know, to put right one of the wrongs that was done to us by this system… the system should devise a custom-made care package for us so that again, like I said about the supposedly assistance schemes that don't come to you and say, "What can we do for you in terms of financial aid or practical help?", there should be one that comes to us for medical help, because our needs are complicated.

"Are we putting the NHS on trial? I hope not. I don't have a grudge against the NHS.  The NHS has done wonders for me.  It is just this little bit of it that has destroyed my life, but I don't think it is the NHS, but I don't know exactly what it is, but it must be something, because 35 years of resistance and silence cannot come from nothing…”

 

Maggie

Maggie's son Daniel had contracted HIV due to a blood transfusion. Her cousin and mother were also affected from blood transfusions

Maggie spoke about Daniel having haemophilia and also having 2 other brothers. She recalled how this had impacted Daniels younger life - not being able to play out like a child of his age should with his brothers and would suffer having recurring bleeds and would have to attend the Children's Hospital at Pendlebury for blood transfusions.

They were taught to administer them at home and she described how she jumped at the chance, as she thought that it might bring some normality in to Daniel’s life and his brothers. She was also able to do this for her cousin and mother who were also haemophiliacs. Maggie then spoke about Daniel being given Factor 8 at Newcastle Royal infirmary for a knee operation.She had to take some of it back the hospital and was told it had been “wrongly labelled.”

By 1980 she noticed Daniel would suffer a lot with colds and sore throats but thought it was down to being at school.  He was also sleeping more and losing weight. 

In 1985 he was very sick and had spots on his stomach and she called the GP.  He attended but stood at the door and didn’t go into the room. He asked Daniel to lift his top and said it was chickenpox, advised calamine lotion and Calpol and then went.  Maggie said she thought it was due to the chicken pox being contagious.Thinking back though she wondered if the GP might have known that Daniel had something more seriously wrong with him. 

Daniel’s condition got worse and the spots turned to sores,  clumping together and bleeding he was being sick and still losing weight.  She took him to Pendlebury hospital in an ambulance and they refused to let him in and instead the nurse came in to the ambulance to see him with a mask, gown and gloves on and was advised to continue with the calamine lotion and calpol. 

She recalled some Jehovah's Witnesses knocking on the door and selling her magazine that talked about in America there was “a gay plague” and that everyone was dying of this, and it described her son’s symptoms of HIV . 

She said “So I took him back to Pendlebury Hospital. The clinic was on and I thought, "Right.I am going to the clinic".  So I went to the clinic and I took him back to the hospital there, straight into the clinic, because I was driving that day. When we walked in, Daniel went "What are they going to do to me?" I went, "Nothing", but even the doctor in the clinic had the same things, the gloves, the mask, the plastic apron.  The nurse and the other lady who used to talk to you like a social worker, even she was gowned up. That was not just for Daniel.  That was for the whole clinic. So I told them what had happened and what I had read and everything else.  They just said, "You are just imagining it and you are just getting hysterical over nothing.  There is nothing wrong with him.  It is your imagination.  You are just getting too upset over nothing"…

She described how stigmatising it was at the hospital and was escorted off the premises for what she knew her son was suffering from.  She then decided to take him up to Newcastle infirmary and called them who said to bring him straight away.  In the car he started to bleed quite badly and his 2 brothers were also covered in his blood causing her to panic. She then had to take him to Middlesbrough hospital as has he had lost so much blood and from there he was transferred to Newcastle. 

I have killed my son. I was the one that was injecting him and I was thinking about my mum and our injecting somebody with something that's a killer, then it is your fault and I still feel like that today.  There's nothing I can say more about that, because that's how I feel”.

She spoke about moving up to northeast and renting a farmhouse to be close to the hospital and the stigma she then faced there.

I got a letter off the farmer and he said he would like us to vacate immediately because your son could contaminate my 2,000 chickens and turkeys, and the only people who knew anything about Daniel or his status was the Social Security and the Social Services, nobody else and there was nobody for miles.It is not as if they were going to shout it from the tree tops.  They were the only people who knew anything Daniel's condition”. 

Maggie spoke about this stigma and what her and her son had to endure from him being a young boy. Daniel’s condition deteriorated and he died at 20 years old after complications with his illness

Daniel's wish was to be buried in Manchester where he came from.  They said the only way they could get Daniel to Manchester was to put him in a wooden box and cover him with sawdust and he had to be buried in a lead-lined coffin, obviously so he couldn't contaminate the dead…  That's the only thing I could think of that for.  By this time my sons had come up and a couple of my friends and my middle son took all the seats out of Daniel's car and he slid - we all slid the coffin in, covered him with a table cloth and drove him all the way back to Manchester. When we got to the other end we had to get another undertaker.  He thought he was coming to the house to see a body.  When he saw the coffin, he couldn't believe what we had done.  He just looked at us and it was like astonishment on his face.  We explained the situation and he just took over from there and he was lovely”.

Many years after his death, Maggie discovered her son had also been infected with hepatitis C.

We would like to highlight how brave and courageous Maggie was in dealing with all this and what she had to go through to honour her son’s final wishes.

 

Megan and Robert 

Megan was infected with hepatitis B from a blood transfusion from an army hospital in the 1980’s 

She became pregnant and was found to have anaemia and was given a blood transfusion in the army hospital which was effective for a while, but then needed another. 

She gave birth to Robert and talked about becoming tired and having symptoms but just  put it down to the birth.  However, a sister from the hospital visited her at home and told her she was looking yellow and her eyes were brown and she described how she was not sleeping well.  She remembers being readmitted to hospital and told she had hepatitis B. She recalled 3 doctors stood at the end of the bed discussing Robert and speaking about whether he would need a test for hepatitis B and one of them saying “it’s okay, she is breast feeding”….  12 months later she went back and was told she had cleared hep B and thought nothing more of it for years. She also said her husband who was in the forces had to be screened to find out if it had been passed on by him, but he was not infected.

She saw a new GP in the 2000s and he asked if her son had been checked for hep B.  So she contacted her son to get checked out and the result was that he came back positive for chronic hepatitis B.  He was told he would have been infected from birth due to his mother having contracted it.  Robert then explained about the impact on his health, physical and mental and that he had begun to drink heavily, but thinking it was only a matter of months his mum said it was around 12 years. Robert went through interferon treatment but did not clear the virus and was offered another treatment that could damage the liver he may need a liver transplant. Robert also went to join the air force but was not allowed due to his status of Hep B. His mum also gave up her job and house to move near Robert has his health and mental wellbeing had started to decline and his wife was worried about him.  She described years of stigma from health care regarding her previous hepatitis B infection when she had to attend for appointments.  And also that Robert was never offered any support around his diagnosis.  

I would just like to say that we feel…I think I speak for both of us… that we both feel very aggrieved that hepatitis B isn't recognised, whereas hepatitis C is.  So thankful that, you know, we have been brought to this Inquiry. We knew nothing about it, nothing until just before Christmas.  We have had no support.  I just feel that financially we should be added to the Skipton Fund (now known as the England Infected Blood Support Scheme) to be recognised.   I phoned the Skipton Fund up.It was one of the shortest phone conversations I have ever had. Basically, "No" and that was it, so rude. We want to be recognised”.