Day 48 of the Infected Blood Inquiry Hearings - London

Sue and Tara Sue’s husband Mick was a severe haemophiliac who got both HIV and later discovered hepatitis C from Factor 8 products. They learnt later that records indicated he drank alcohol and this was given as a possible reason for his liver problems.  This was shock and added pain for the family to discover and in fact both Sue and her daughter Tara said he rarely drank alcohol… He wanted to stay totally private about his illness, both the haemophilia and the HIV, so the family kept his situation to themselves, as they knew questions would be asked and people would treat them differently. Later, he suffered a brain haemorrhage and this left him “a different man”.  Sue could no longer recognise him as the man she knew and was unable to communicate with him as he would get angry.  Tara became his support system and she described how she would stay awake with him at night as he was too frightened to go to sleep. The successful business he ran with Sue folded as he was no longer able to work and Sue was left to work night shifts whilst caring for her family during the day.  They were given no external support or information.  The Macfarlane Trust provided some financial assistance.  When he developed serious complications from liver problems, just six months before he died, they thought it was the beginning of AIDS developing as they did not yet know about the diagnosis of hep C. They did not understand the seriousness of a hepatitis C infection at that time and were initially relieved that it was that, and not AIDS. Sue said Mick died a “slow, undignified and horrible death” and that “changed all our lives”.  Tara described how the day after he died, she felt unable to tell a friend during a phone conversation for fear of being asked what happened and Sue never forgave herself for not being able to be with Mick when he deteriorated suddenly.  Sue’s closing statement was: “To have lost a wonderful husband and father was devastating, we thought we were just unfortunate, but to learn 25 years later that the potential fatal effects of using infected blood had long been documented and that false entries in his medical records of alcohol abuse had been responsible for his demise from hep C, makes a mockery of the Hippocratic oath and the trust that we are supposed to put in the medical profession. "This just brought fresh pain and an added sense of injustice to our family and it is not only an insult to Michael’s memory but a complete betrayal of the faith he had in the doctors who were meant to care for him.”
Jan Jan’s Mum had hep C from a blood transfusion and as a result she caught it also during childbirth.  Jan thought she had been tested for it on several occasions, but went to the GPs on many occasions, over many years as she was feeling so tired and suffering with lots of joint and muscle pains.  This was repeatedly put down to her being overweight and she was dismissed with no further actions.  Even when her Mum came with her to one appointment and disclosed her own hep C she was not offered the test. Jan’s mum was told of her diagnosis publicly in a waiting room, which upset her greatly.  Years later when Jan was diagnosed herself, she was told over the phone..  She was given no information or support around any aspect of living with hep C.  It was only when she went forward for IVF treatment that she found out she had a 5% chance of passing it on to her own child, a chance she did not want to take.  Hep C treatment was offered and she thought she would get Harvoni, but as her liver damage was not advanced, at that time only pegylated interferon and ribavirin could be offered.  She did this and suffered badly throughout.   It didn’t work for her and it was only after getting her MP involved that she was finally offered Harvoni.  Time was of the essence as she was getting older in terms of her fertility chances, but by the time she had finished both treatments she was 39.  She started to pursue adoption and also private IVF treatment but was told not to even try this time and that it was too late.  She is also having problems with being able to adopt as she is still finding it hard to cope with the ongoing effects of treatment, how badly her situation was handled and her mistrust of doctors.  The adoption process has had to be put on hold while she has counselling to deal with the fall out of what happened to her. Part of the evidence she gave to the Inquiry included a copy of a letter she had written to her GP, nurse and also NICE (National Institute for Health and Clinical Excellence) which was read out to those attending: “I’ve been failed not only once by not being diagnosed for 36 years and having to beg you for treatment but then again when I picked myself up and try to move on you failed me as a trusted professional and you failed to inform me of the consequence of a treatment that sacrificed my fertility without even telling me.  You took away my choice, I deserved a choice.   "I’d spent so many years being ignored and dismissed by so many GPS, when I was right, and you have done it again.  And through all of this, the only concern any doctor has ever had was my BMI, never my well-being, never my mental health, only ever this, which was mainly caused by the hep C, causing so much joint and muscle pain and chronic fatigue.  Now I fit in your BMI box, it’s too late.  You blew my world apart not just once, but twice, you’ve broken my heart, I will never forgive you for this.”