Day 57 of the Infected Blood Inquiry hearings, London

‘Mr AW’ 

Today’s hearings began with an anonymous witness, ‘Mr AW’. Mr AW was diagnosed with leukaemia in December 1992, aged 18. As part of his treatment Mr AW received blood transfusions, before being declared free of leukaemia in April 1993.

Ten years later, Mr AW received a letter from Luton & Dunstable Hospital asking him to attend the Haematology Department, where he was informed that he had hepatitis C. 

Letters gathered by the Inquiry team show that it had been known to the hospital that Mr AW had hepatitis C as early as September 2000, despite Mr AW being unaware he had been tested for the virus at this time, and that his risk factors for hepatitis C were “clearly the multiple transfusions he would have had in 1993”. 

Documents show that there were a number of missed opportunities between 2000 and 2003 to inform Mr AW of his diagnosis and that the hospital gave conflicting justifications for the delay, at one time saying that it was due to Mr AW not attending appointments (despite there being numerous appointments Mr AW did attend in that time period) and another that the information ‘only came to light’ in 2003. 

As well as the shock of his own diagnosis with hepatitis C, Mr AW explained that he was consumed with thoughts about whether there were others out there who may have contracted the virus in a similar way but remained unaware. Mr AW said he became introverted and less comfortable in social situations as a result of his hepatitis C diagnosis. In August 2004 he started treatment with interferon and ribavirin but had to stop five months in due to the significant side-effects, which caused him to lose weight and experience severe palpitations. In addition, Mr AW experienced psychological impacts, finding himself more prone to anger and feeling paranoid about how he was being perceived by others. 

Mr AW outlined his worry that he could have passed on the virus to his wife and the effect it had on their relationship. Unable to work during treatment himself, his wife also had to reduce her hours at work to have more time to support him, which was financially tough. The couple wanted to have children but had to go down the route of IVF (a consequence of Mr AW’s leukaemia). However, due to Mr AW’s hepatitis C infection, their options were reduced, with only two clinics able to take the embryos, “another kick in the teeth” in Mr AW’s words. 

It was only after seeing the episode of Panorama on the infected blood scandal in 2017 that Mr AW felt a bit more open to talking about his experience. He described how watching that, and the early witnesses at the Infected Blood Inquiry, helped him to feel less alone in his experience, particularly with others testifying that they had received infected blood after 1991, which had previously been believed to be the cut-off point for people receiving infected blood. 

Mr AW’s testimony finally covered the financial impact of his experience. He described being pushed out of employment at a small IT company in 2003 because he couldn’t get time off due to feeling so unwell. While off work, he worried about explaining the 14 month gap on his CV. Mr AW has faced problems getting life insurance cover, likely due to both his leukaemia and hepatitis C. Because his transfusions were after 1991, he was not eligible for money from the Skipton Fund and had received a similar response from the English Infected Blood Support Scheme. 

Mr AW said that he would like to know if there's anyone else in his situation who was infected so late and what happened in his own case – was it really just a “freak accident and the blood donor just slipped through the net”?

Mr AW concluded by thanking his family for their support and two politicians – Diana Johnson and Andy Burnham – for their roles in supporting infected blood victims and helping to instigate the inquiry. 

 

‘Mrs AX’
The second witness of the morning, ‘Mrs AX’, also wished to be anonymous. Mrs AX met her husband in 1972 and, before he became unwell, she said they were a “normal couple” who had “nice holidays” and a “nice lifestyle”.

In 1985, Mrs AX’s husband became ill and was eventually diagnosed with a kidney condition. This required him to undergo plasma exchange, a form of dialysis, to slow kidney failure. Over the course of receiving this treatment every fortnight for around 18 months, Mrs AX’s husband’s kidney function gradually decreased, eventually reducing to below 20%. 

A laboratory report from April 1993 obtained by the Inquiry shows that Mrs AX’s husband was known to be hepatitis C-positive, yet Mrs AX and her husband were not informed until 1996. While attending a routine renal appointment to receive blood tests, Mrs AX noticed the doctor applying a ‘Category 3 risk’ sticker to her husband’s form and asked what it was. The doctor initially said he didn’t know and, upon looking into it, said “it looks like you’ve got hepatitis C”. 

Asked to describe the effect of the hepatitis C diagnosis, Mrs AX said it felt like “just something else to deal with”, in the context of her husband’s other health problems. Nevertheless, Mrs AX worries that the hepatitis C may have exacerbated her husband’s renal condition. Finding out he had hepatitis C as well changed Mrs AX’s husband, she said, causing him to become more insular and “horrible to live with”. “I think he felt that life had been so cruel, and he just didn't deserve to have something else as well, with everything else that was going on”, she said. 

Mrs AX described the stigma her husband felt, which was made worse when he was receiving dialysis and kept isolated from other patients for long periods of time due to his hepatitis C infection. While visiting his mother, Mrs AX’s husband was initially refused dialysis at Exeter Hospital because of his hepatitis C status. 

In 2006, Mrs AX’s husband was diagnosed with renal cancer and referred to the oncology department to have a kidney removed. While waiting for an appointment for this, Mrs AX’s husband had fluid drained from his lungs, which was tested and found to be free of cancer. By the time he eventually was given an appointment, having been delayed and “fobbed off” over the course of months, the cancer had spread to his lungs and was inoperable. Mrs AX’s husband died on 5th January 2008 – Mrs AX’s birthday. 

Mrs AX said she stayed strong while he was still alive but, after he died, she was off work for three months and “couldn’t face the world”. A final indignity was difficulties with the undertakers, who wouldn’t dress her husband in one of his suits, meaning he was cremated in his hospital gown, with his suit laid on top of him.

 

David

David has haemophilia A, which he was initially told was severe but was downgraded to moderate in the late 1970s. David was initially treated with plasma and later cryoprecipitate until about 1983. A document from 1969 shows that David was part of a trial to discover whether transfusion jaundice occurred in patients suffering from haemophilia or Christmas disease who were treated with blood, plasma or plasma concentrates. As far as David is aware, his parents were not informed about his participation in the study and he himself was unaware until the document came to light recently.  

In August 1983, David was given Factor VIII for an injury sustained when a rounder’s bat thrown by a friend hit him in the face. David thinks that the injury was probably not serious enough for him to have needed the Factor VIII. Neither David nor his parents recalled that any warnings had been given about receiving Factor VIII but this is most likely how he contracted hepatitis C. At a later date, having moved to another area of the country, David recalls requiring treatment and being offered either DDAVP or tranexamic acid, rather than Factor VIII, due to unspecified concerns around Factor VIII. 

In 1990, David was working in London and went for a routine blood test at the Haemophilia Centre. The test showed raised liver enzymes, which was attributed to David having had three or four pints the night before at a colleague’s leaving do. David was reassured that this was the reason for the raised liver enzymes.

Around 1992, David started to miss work quite frequently due to persistent flu symptoms. Colleagues noticed that he seemed to have lower energy than in the past. Blood tests revealed that David had hepatitis C, which he was informed of in a busy corridor, with others around, and told that it was probably as a result of his “lifestyle choices”. 

David started treatment with interferon and ribavirin in 1996, which brought severe side effects, including “violent mood swings”, night sweats and flu-like symptoms. David said that he was surprised his wife stayed with him, such was the effect on his personality. The treatment was ultimately unsuccessful and David experienced a deterioration in his physical and mental health. His marriage broke down in 2001 and an enduring sadness for David is that this is around the time he might have expected to have children but, due to the breakdown of his marriage, he never did. 

Between 2003 and 2005, David became very insular, going from “quite an active social life, various hobbies and activities, friends, parties, meals out” to “sitting there on your own, hoping that nobody comes and knocks on the front door, not answering the phone, and just building a wall … and hoping to hide behind that wall until it all goes away or it's all over”. 

In 2005, David went to see the Le Mans sports car racing with some friends. While there, David found himself to be in increasingly agonising pain and had to be driven back home, and was then admitted to Addenbrooke’s Hospital. After waiting for a liver to become available, David eventually received a liver transplant. Whilst the operation initially appeared to have been a success, David’s condition deteriorated after 48 hours and it became apparent that the new liver was not working as it should. He was informed that he would need another liver and that they “hoped that another suitable liver would be available in time”. 

Whilst on the high dependency unit, David recalled being in a lot of pain, slipping in and out of consciousness, coming to and seeing a lot of familiar faces but also the hospital padre. Upon coming round the next day, David said nursing staff looked “very surprised to see me. No breakfast had been ordered for me, and subsequently the medical team did say they had not expected me to make that Sunday.”

David had a second transplant in December 2005. The medical team were unsure he would be strong enough to make it through the operation and gave him very low anaesthetic due to concerns that a higher dose would be too much for him to survive. This meant, however, that David regained consciousness during the operation, the memory of which still continues to give him nightmares. 

After discharge, it took three months before David could walk. As part of his treatment, David had been prescribed the opioid fentanyl but had not been informed of the addictive nature of the drug. David found he was taking increasing amounts and realised that he had become addicted to the drug. It took two attempts for him to go ‘cold turkey’, eventually succeeding after a “torrid” four or five days while on holiday in Spain, following three years of dependency. 

Since the second liver transplant, David has had regular blood tests for hepatitis C, which come up as undetectable, something which puzzles doctors, with no other case on record of somebody with such a high viral load no longer having any trace of hepatitis C in their system. However, the medical team are not willing to give an assurance that that's the end of it, meaning David faces continuing uncertainty. 

David explained that his experiences have caused him to struggle to trust doctors, saying that although he is “absolutely convinced that every person I deal with has got my best interests at heart … it is difficult to disassociate what has happened to me with current treatment”. David and his family also encountered difficulties accessing his medical records, with some files his mother had sought only being sent to him in August this year, despite previous claims that the records were not available. 

David feels that he has changed a great deal as a person as a result of what happened to him. Where previously he was gregarious, social and active, “all those things have been taken away from me”. He has managed to rebuild his life to a certain extent but feels less social, more melancholy, more cynical. He has got re-engaged but struggle to live with his fiancé and her son and feels his ‘default’ is now being in his own company. 

David has struggled to receive social security support over the years, particularly when Disability Living Allowance payments were replaced with Personal Independence Payments, which David refused to undergo an assessment for on principle. David now does some work as a driving instructor, which has helped him to rebuild some confidence, and receives payments from the English Infected Blood Support Scheme, but his remuneration remains “considerably less” than he would have expected to be receiving at this stage in his life given the career path he was on. 

 

Mary 

The final witness of the day was Mary Grindley, who attended to talk about the experience of her late husband John, who had haemophilia A. 

John spent a great deal of his childhood in a children’s hospital, before enrolling at Treloar’s College, where he became head boy. John was one of the first haemophiliacs to receive Factor VIII, which he regarded as positive as it helped to increase his independence. 

Mary and John married in 1978 and had a son together. Whilst John’s condition meant there were some things he couldn’t do as a father, like play football, Mary said he was “a really good father to his son”. 

As information began to spread about the health problems being experienced by people who had received blood transfusions and blood products, Mary and John attended a Haemophilia Society AGM in 1983. Mary asked a doctor about people contracting viruses and the implications for having children, and was told that not enough was known about how AIDS was transmitted and to “put everything on hold as far as having a second child.” Mary and John decided the risk meant they would not have a second child, which was a desperate disappointment to Mary, and to end having a physical relationship from that point onwards. 

During the 1980s, both Mary and John contacted a range of politicians with their concerns over infected blood and the import of Factor VIII, but received responses that largely sought to reassure them or downplay the risks. 

In 1983, John received a “skin or patch” test, which they believe was to check for AIDS (at this point there was no blood test for AIDS). John’s understanding was that he had tested negative and notes from the time also suggest it was recorded as negative. Medical notes from July 1985, however, show that John was recorded as being HIV positive. Despite this, John’s diary shows that he was again told around two months later that he was HIV negative. 

Later in 1985, John finally became aware that he had HIV. Mary said they didn’t tell many people and tried to carry on as normal. In the early 1990s, John became very unwell. In the final months of his life, John told the people closest to him of his HIV status, paid for his funeral plan and also informed the undertakers to spare Mary having to tell them. 

Mary discussed the stigma John encountered when people became aware that he had HIV. While still working, some colleagues played ‘pranks’, putting up stigmatising notices. John and Mary were harassed by neighbours and on one occasion had their car windows broken. 

Mary spoke of her anger at comments made by then-Health Minister Edwina Currie in 1987, when she said “good Christian people who wouldn't dream of misbehaving will not catch AIDS”. Mary wrote to her and received a response saying Ms Currie “had in mind merely that, for most people, a responsible and caring way of life should protect them and their loved ones from the threat of AIDS in future”. 

Around 1992, John also learnt that he had hepatitis C, which they regarded as “just one more thing” because he was so ill with HIV by that stage. Later information suggests John may have had hepatitis C since as far back as 1969. 

In 1994, Mary’s father was very ill, having suffered a stroke. During this time, Mary regularly travelled to visit him but worried that John might commit suicide while she was away, something he had spoken of as an option if things got too much. Whilst Mary says she doesn’t feel he would have, it was still a source of worry to her. In 1994, her father and John’s father both died, before John himself died aged 41 in June 1994.  

Mary’s grief caused her to feel stress, anxiety and depression. She tried to return to work as a nursery teacher but it became too much. A powerful written statement by Mary was then read out. It read: “I feel I have lost so many things in my life and the whole situation has affected me beyond measure. I have lost the love of my life and been left to bring up my son alone. I lost my career as a teacher and have not been able to work since because of bad depression. I am still devastated by not having a second child. Since my son left home, now married with two small children, I have lived alone. It is very lonely with only the four walls to talk to. There is nobody to confide in, to make me a cup of tea or care for me when I'm ill, although my family help as much as they can and have been a great comfort, which is much appreciated. I think people must think that maybe after all these years have gone by I would somehow forget what had happened. In fact, John's death has permeated every area of my life and affected every area of my life. I lost the love of my life and he is not here anymore.”
Mary has also encountered problems receiving financial support, including a particularly frustrating experience with the Macfarlane Trust. She has continued to campaign around infected blood until the present day, writing many letters and raising awareness. 

Mary concluded by saying she “would like to pay tribute to all those infected and affected who have given their evidence and all their witness statements to this inquiry. They have shown great courage to do so. I have met some amazing people, both before and during this inquiry. They are forever in my heart.”

 

Conclusion

Sir Brian Langstaff, the Chair of the Inquiry, concluded this stage of the Inquiry hearings by paying tribute to the courage of those who provided evidence. He summarised the emerging themes, noting that the impact of decisions taken (or decisions not taken) in the 1960s, ‘70s and ‘80s continue to this day, and noted the ‘relentless hardship’ faced by those affected, repeating his call for the Government to rectify this. 

Sir Brian said: “… may I make it clear that if wrong was done, I have the power under the Inquiries Act to say so. And, if it was, I will. If there is criticism to be made, I shall make it, and I shall not hesitate to name names where it is appropriate. If there was fault, I intend to say so. Now, where actions should be taken in remedy, I expect to make robust recommendations. This is not the same as determining liability in a civil or criminal case. I have no power to do that. That is a matter for the courts. Whether my findings at the end of the day lead others to take matters before those courts is for them, not for me, to determine.” 

The next set of hearings will begin on 24th February 2020, with testimony from experts on social and psychological impact, hepatitis, HIV, and blood and bleeding disorders, with hearings with decision-makers following in June. Sir Brian noted that the Inquiry team will consider to work hard in the meantime, gathering and analysing documents and arranging further evidence.