Day 22 - Infected Blood Inquiry - Leeds

The three testimonies today varied in the nature of their backgrounds as individuals; yet each story continued to hold key themes of misinformation, judgment and a significant impact upon not just the individual, but the families of those infected. Again, the courage of the witnesses must be recognised and several aspects of all the stories were harrowing and heart-breaking to listen to.

We would encourage anyone interested in the issues raised by those who have received infected blood to watch the hearings online on the Infected Blood Inquiry’s website to gain a full understanding of the devastating problems people have faced and to comprehend the full gravity of their experiences.

Nicola
 
Nicola told of her career within an NHS Trust as a Clinical Governance and Audit Manager so had a good understanding of systems and an existing relationship with those in healthcare. She was diagnosed with the virus in August 2009 and believes this was a result of blood transfusions she had in 1975 and 1980.

She talked of her GP being ‘lovely’ but unfortunately providing her with very little information when she was diagnosed and explaining she would have to wait three to four months for a further appointment.  At this stage she was already experiencing fatigue, bruising and sweating and so chose to access an appointment privately so she could be seen more quickly. She noted that she paid a lot for this appointment and yet was still left feeling embarrassed by the questions she was asked.

In 2010 she began a course of inteferon and ribavirin and recalled being told she was ‘lucky’ to receive this due to the high cost of the treatment – a phrase which felt highly inappropriate and which is still a source of anger.  She was also told that she would not be offered it again if it was not successful. Fortunately it did work but afterwards she described feeling that she had lost her ‘usefulness’ within the family unit and was not able to care for her grandchildren as she did before – they did not understand why ‘Grandma didn’t want to play’. It had a huge impact on her mental health, and the severe depression she experienced during the treatment has not completely left her to this day. This, and the lasting physical effects of the virus and the treatment, affects her family, relationships and day to day life to this day.

She said she felt “shameful”, and experienced extreme stigma throughout her entire journey, from diagnosis until today, and was offered little support throughout. She still has anxiety that the virus will return and worries about whether she inadvertently passed on the infection to others before she was aware she has been infected.

A key theme from her experience was that despite her confident nature and enormous understanding and pre-existing relationship with many of the healthcare professionals involved (knowing some of them quite well) she still felt she was not provided with the right care or support. When she requested regular Fibroscans to review her health post-treatment, she stated one consultant told her she had ‘had her money’s worth’ from the NHS already and was asked if she had ‘had her pay out’. Despite her best efforts she was left feeling like a ‘vulnerable patient’.

On obtaining her medical records, which was not easy to do, she described feeling under scrutiny during the process. She was told her records from 1980 had ‘gone missing’ and when she finally managed to track them down they were incomplete. She had viewed her records around her surgery in 1980 prior to her diagnosis and feels that some of that information was no longer there.

She closed by saying how she couldn’t understand why, when so many high profile cases, including Harold Shipman and others in the past had led to audits, why weren’t they after this? Her ‘wish at the end of this Inquiry is that there are actions instead of words’.

Ms N

Was giving evidence about her father, who was a haemophiliac and who became increasingly unwell in the 1980’s.

She remembered her mother contacting a consultant at this time as her father had vasculitis and she was worried this was a sign of HIV infection. The consultant had told her mother this was not likely and no tests were undertaken at this stage.

He was eventually diagnosed with HIV, hepatitis B and C. Although she was only 6 at the time, she described understanding, even at such a young age, the seriousness of this, and was told that this was a secret.

Her father’s health worsened over the years and she described the impact this had on both the family and her life at school. Her peers and staff at the school were unaware of what her father and family were going through. She described the stigma as enormous, stating ‘people think that if it was really real it would be out there in the media and justice would have been served’.

It was incredibly emotional to hear her talk of her father’s health deteriorating and the change in his character at times as a result, describing him as ‘child-like’ in some respects and her mother being left to care for him until he was in the care of a hospice – despite this her father was always described as ‘lovely’ and she spoke of him incredibly fondly.

Her father passed away at the age of 54 as a result of accidentally drinking prescribed liquid morphine whilst on a trip to Scotland with his wife. She made it clear that the child-like nature of her father at this stage meant he would not have understood the consequences of this.

The impact of his death was clearly enormous emotionally and continues to impacts the family even now. Her mother was only able to manage financially due to receiving money from a friend and is still working now and not able to retire.

Ms N has a son who receives daily treatment for his haemophilia and described how the events surrounding her father have left her struggling to trust the NHS.

Suresh

He had Haemophilia A and was treated with contaminated Factor 8 from 1979 – 1983. He explained, with the aid of his medical records, that he was first tested positive for hepatitis C in 1990, but was not informed until 1993. He also got hepatitis B in 1979, though this was never actually communicated to him, and HIV in 1983. In 2003 he was informed that he was infected with vCJD.

In 1980 he was taken to hospital as a result of a huge bleed and remembers his roommate in college telling him his eyes looked yellow. He talked of his return to his room and being ‘quarantined’ and like a ‘prison’ whilst he was extremely ill. He also said a nurse told him ‘we were expecting this’ and believes that at this point it had been established he had hepatitis A and B and may have also been already infected with hepatitis C. At no point was he informed of any of this and his medical records actually stated ‘he was not told what the diagnosis was’.

When diagnosed with HIV, he was offered no support and simply told over the phone to ‘go home and say goodbye to his family’. His older brother also received the same diagnosis and struggled greatly as a result with no offer of help or support; he ran away from home as a result and eventually passed away in 1995.

Suresh explained that he chose to remain at university and was eventually offered treatment for HIV in 1989, by which point he had got married. Although records show that in 1991 he would be referred for a ‘study’ using interferon treatment, he explained that even at this stage he was not told he had hepatitis C, only that he was receiving “treatment for liver damage”.  He reflected that he felt like a ‘guinea pig’ in a trial. He underwent four attempts of interferon treatments in total but the impact on him physically meant it was too great a risk to complete the first three.  Eventually he cleared the virus in 2010 but he explained that the effect on his liver was irreparable.

He had experienced a lot of stigma from medical professionals and said there was a lack of support during all of these experiences. At one point during an endoscopy appointment he was told that ‘his camera’ was destroyed due to the risk of cross-contamination in relation to vCJD, so the appointment would need to be delayed – he noted that these cameras cost £40,000.

The instances of medical professionals providing advice that contained little empathy were numerous within his account of events, however, when asked about the impact that the infections had upon his personal life, he spoke of medical staff encouraging him and his wife to terminate a pregnancy due to his precarious health.  As a result, not only had he missed out on the ‘joys of parenthood’ but he explained that in his culture, children look after their elders and he and his wife do not have ‘this cushion to fall back on’.

He is part of the Birchgrove Group Woodland Project which planted over 1,200 trees to honour the lives of haemophiliacs infected with HIV-contaminated products. He reflected that he is grateful for this tribute and that working for a campaign group has helped give him the confidence he needs to fight. He spoke of attending the funerals of over 90 friends. Suresh is now part of the Tainted Blood group and commented that the group are ‘amazing and fight tirelessly’ to make sure people are not isolated.

In Sir Brian’s closing statement at Leeds, he urges others to come forward and share their stories – particularly those from the Thalassemia and Sickle Cell communities, as well as those in other groups, regardless of race or origin. He argued that it is essential that people come forward to share their experience, whatever that might be.