Day 53 of the Infected Blood Inquiry hearings, London

Mr AR  

He was a retired doctor with haemophilia and was infected with hepatitis C via Factor VIII.

Discussion took place around his father (who was also a doctor) and how the practice of one unit of blood being given to women giving birth many years ago, may not have been essential.  

He qualified in 1974 and went to Birmingham and worked there in 1975 and at that time they were only allowed to use cryoprecipitate for patients. When he later went to Queen Elizabeth Hospital he taught patients how to inject Factor VIII for themselves.  

He received American Factor VIII and became jaundiced swiftly after, he was signed off work for three weeks and his liver enzymes were elevated so he was advised he had Non-A/Non-B hepatitis in 1976.  

He asked what it was and what were the consequences. The doctor told him "you are likely to have an increased risk of having cirrhosis” and an increased risk of liver cancer.

He called the pathologist to do his own investigations as he didn’t understand how this had happened. He also told patients that if they went yellow they would have an increased risk of cirrhosis or liver cancer. No consent was given in written form back then, it was always provided verbally. AR advised patients of the risk of “hepatitis” when being given blood products.  

A study was undertaken at the time on those who regularly received blood products, between January and February 1976 and it was found that 15 patients had hepatitis C out of 115.  Factor VIII/IX products were used with this group. As with AR, neither had non-A or non-B and they could not identify if these were primary or previous injection.

The study was published in 1980 and reported "The majority of our patients with symptoms of hepatitis had neither hepatitis A nor B. Since both these infections can now be diagnosed, it has become obvious that there is a third type of hepatitis, so-called non-A, non-B hepatitis. This would seem to be the most likely cause of illness in our group of 14 patients, although because this was a retrospective study it was difficult to establish whether these episodes were primary infections or recrudescences of previous infections. The epidemiology of non-A, non-B hepatitis is well known and it has been shown to be a major cause of hepatitis associated with blood transfusion in North America. There is also evidence that non-A, non-B hepatitis can progress to chronic active hepatitis. 

In the UK it has been reported that patients regularly receiving blood products suffer from repeated episodes of jaundice and also from chronic hepatitis, and the most likely cause of this would seem to be non-A, non-B hepatitis." The study referred to a suggestion that the problems increased since 1974, when foreign produced factors came into widespread use in the country, but also referred to AR’s own study "The non-A, non-B hepatitis occurred in patients receiving only British products and also those receiving cryoprecipitate… As yet, there is no diagnostic test for non-A, non-B hepatitis. We feel that one is much needed if this infection is to be eliminated from blood products.  

Although cryoprecipitate has been largely replaced by other products, there are many other areas of medicine where blood products are used. From our results it is evident that non-A, non-B hepatitis is present in British blood donations and that these are a potential source of infection."

He later worked in Wales and only dealt directly with patients when a colleague was on annual leave.  “I was kept away from haemophiliac patients, my main point of call was day units and working with chemotherapy”. Mr AR suspected he was kept away from haemophilia patients because he had previously informed patients of the risks from blood products. 

In 1984 he became a GP, and said he started to feel unwell and had chronic fatigue and significant joint pains.  He started asking for Lister products as he no longer trusted Factor VIII. 

In 1992 he was formally diagnosed with hepatitis C: “My joint pain was due to a high viral load, I was pleased to finally have a status that was not non-A or B.  I was later referred to a clinical treatment trial and given ribavirin and interferon in late 1992/93. They knew there were lots of side effects to this treatment and I was offered no support, my first lot of treatment was 102 weeks and the last six months I received so much ribavirin that my white cells depleted to 2,000 when they should have been 60,000.” 

“I can’t remember the total two year period on treatment and it took 18 months post-treatment to become relatively normal. I was told initially I would have mild symptoms but it was a period where I slept a lot. I eventually had to resign on mental health grounds at the age of 45. 

“GPs work privately and contract to the government and have to hire their own locum so working in this manner was difficult as it was more a self-employed basis that could not be sustained when I so chronically fatigued. There were community rumours that I was an alcoholic.”  

“I still suffer numbness, cold, lethargy and deafness.” 

“Later I was interviewed by a partner and told by the practice manager my services were no longer required as I had hepatitis. There was a lot in the papers about hepatitis C and people catching it from their doctors.“

“I was diagnosed with clinical depression post my hep C treatment. My financial position got worse and I received a Skipton payment in 2004 and since 2016 from EIBBS”.  

At the end of the hearing Sir Brian Langstaff asked:

“How aware do you think those with whom you worked as general practitioners were of hepatitis C and what do you think it would have taken to make them aware?” 

AR responded: “They weren't aware of it at all, not at all. I think something like -- all blood transfusion services have records, and I think a look-back -- because every general practitioner has a patient who has been operated on and who has had blood. That would involve the whole of general practice. So if they did a proper look-back to see who got the bad blood, that would involve all the GPs, and then they would have to, because, I don't know, in a year, maybe 30 or 40 patients in a practice would have an operation that required blood. That involves the whole country”.

When the hearing finished, the screens were turned off and everyone made their way to get a tea or coffee. Our colleague was left considering the damage caused by hepatitis C, the illness, the after effects of treatment and more importantly the full impact upon both the person, their mind, their wellbeing and careers. She heard the story of someone who was clearly an intelligent man, whom had been a victim of something that affected decades of his life, the destruction of hep C seeping into every corner and crevice. He still faced subtle and overt forms of discrimination and to this day felt he needed to protect his identity due to fear of further discrimination for having had hep C. She described feeling huge empathy as he had not placed himself at risk and had trusted a respected national institute to look after his health, not reduce it.

Malcolm and Violet Slater

The second witness mirrored much of what AR had to say, he outlined the prejudice against him as a child, for example being made to swim alone in the pool. He and his wife felt very aggrieved by the failings of the NHS and professional letters were submitted that almost implied that his drinking was affecting his health status, blame being laid at his feet when in fact he was also another blameless victim.  

At one point his wife stated they knew something was wrong and thought that they may have had HIV. They wondered how long they might have left before then died. This family decided that they would not have more children as they did not want to place them at risk. Again this witness, who was a qualified solicitor found himself chronically fatigued and forgetting chunks of his life.

Our colleague reported: “I left the Inquiry emotional and proud of those that are supporting these people and those that had confidence to speak and challenge what was such a mighty injustice.  

It was a privilege to be there and is a privilege to be part of The Hepatitis C Trust, who are leading the way forward to support those affected and infected, find those at risk and raise awareness to prevent further infections in the future”.