Day 19 – Infected Blood Inquiry – Leeds

Different members of staff continue to attend the hearings around the country, to give support where we can and to learn from those sharing their stories.  They continue to be both heart breaking and disturbing, and the bravery and determination of those giving evidence to share their very difficult and highly personal stories is humbling to witness. Today was no exception.
Sean and Eleanor
Sean was a mild haemophiliac, which meant that despite some injuries over the years, it wasn’t until 1992 that he first received Factor 8.  He was given it on several occasions, including training him on how to use it at home.
In 1994, when along with his partner, Eleanor (who later became his wife) they went to discuss his haemophilia with his doctors including on finding out how to manage any bleeds Sean may have. They described themselves as a young couple, she just 21, taking their relationship more seriously and wanting to learn more. Several doctors were present, which was unusual, but they had a general conversation about different aspects of his condition, but just as they went to leave, one of the doctors, completely out of the blue, told Sean that “he had hep C and had had abnormal liver function tests for years”.  He then went on to make light of it, and commented “At least it’s not HIV”. They were given no information. Eleanor reflected that the way they had been treated “was disgraceful”.
Sean’s brother who was also a haemophiliac, went on a “treatment strike” and didn’t want to engage with his medical team as a result.  His mother pushed him to go however and he later found out he had hep C. Understandably Sean and his brother were angry, his brother went into denial and Sean felt totally betrayed by the doctors.
Aside from the hep C, there was confusion about whether he also had hep B, HIV was ruled out, but there were also concerns about CJVD.
However, from 1994 until 2015, Sean didn’t receive any information, tests or scans to monitor his condition. Eleanor said how whenever he got ill at home, she would immediately think “This is it”, as the only information that they had been able to glean was that it was after around 25 years of infection that hep C would start to cause serious problems. At one point she started to question herself… “Is this even real?”… as no one ever mentioned it. But as the symptoms started to affect Sean, they also reduced his capacity to work, which put pressure on them financially.
They didn’t feel able to discuss their situation with others, aside from a few family and friends, so there was little additional support in their lives.
Eventually after 2 long and very difficult interferon based treatments, Sean finally cleared his hep C. But even then confusing information was given to him about his condition by his doctors and he was advised to claim the stage 2 payment as he had cirrhosis, another devastating diagnosis, only for it to be turned down later because he didn’t “meet the criteria”.
Lesley
Lesley was a former member of staff here at the Hepatitis C Trust.  When she was advised to have a transfusion following the difficult delivery of her first child she refused, as she was aware of the risk of infected blood in relation to all the news about HIV in the early 80s. She hoped her haemoglobin levels would recover naturally so they reluctantly kept her in. Her father even offered to donate blood for her, but he would not have been able to provide the quantity provided, so then a doctor asked if she would be willing to have a donation that was heat treated. She felt increasingly under pressure from the hospital was referred to as a “bed blocker” in front of others there, so reluctantly agreed as the situation was getting intolerable.
A bag of blood was shown to her with a label stuck on saying that it had been heat treated. She described how she felt “this was the best it was going to get” and was again reassured by the doctor that the blood was “safe”.  This was given to her on her birthday.
It wasn’t until 20 years later that she started to experience unexplained symptoms that came and went but by 2004 she was getting “overwhelming” fatigue – at first it was put down to her extensive work commitments running a corporate training business, family and a busy life. It got to the point that she was sleeping 12 hours a day and still feeling exhausted.
She noticed cognitive difficulties, beingunable to focus and forgetting words, joint pains, headaches and was at one point diagnosed with high blood pressure but that didn’t explain her symptoms. This went on until 2006 and she still “had no answer” and the doctor thought she was depressed and offered anti-depressants, which she refused.
In 2007 whilst listening to Women’s Hour, she heard Dame Anita Roddick speak out for the first time about her own diagnosis and slowly realised that she totally related to it all.  Not long after that she made an appointment and asked for a test, the GP was reluctant at first and “thought she would be ok”, but a test was arranged.
She was called by the receptionist to arrange an appointment 10 days later when the results came back, so she knew before she had even got there, what the outcome was.
Her very personal and compelling story unfolded from there, and her subsequent closing statement resonated with all those attending.
“34 years ago, I was unknowingly thrown into a lifelong battle I never wanted to fight.  It was started by Governments taking decisions I wasn’t involved in or consulted on – and like most battles it was ordinary people who were left to fight it.  Some might find the analogy strange – but when you’re fighting for your life, make no mistake – that’s what it is.
Men, women and children found themselves dropped into a war zone they couldn’t yet imagine in their worst nightmares and for which they were totally unprepared and ill-equipped.
The true number of those in this deadly arena may never be fully known – the death toll currently stands at around 2,800 – but that number increases every day.
Those forced into this nightmare have, for decades fought against silent killers like hepatitis C and HIV.  Stealthy enemies who give no quarter, don’t fight fairly, or play by any rules.
There were no allies for us. No reinforcements came over the hill to save the day – no recognition – medals for valour, or reparation for sacrifices made and losses incurred.
This was a lonely struggle covered with a blanket of denial by successive Governments who didn’t want the mistakes that led to this disaster made public. In the best tradition of State secrets they didn’t want to acknowledge the battles or publicise the losses.
All victims have suffered the destruction of hopes and dreams – lives changed forever – families torn apart. This disaster has left widows and orphans in its wake, imposed crippling financial and economic costs on those involved. And it still isn’t over – as this insidious enemy continues to take the lives of those left at the rate of 1 every 4 days.
Many have felt stigmatised, betrayed, abandoned. Those left carry deep wounds, both physical and emotional and for too many those wounds have proved fatal. We live with constant pain and shortened life-spans. Every check -up, screening and scan brings the possibility of increased risk of cancer, liver disease, heart problems and Infections that can prove fatal because of compromised immunity.
Human beings can endure the unthinkable – can survive the unimaginable – as long as they have hope. Hopelessness is the one thing certain to crush the human spirit.
The victims of the greatest treatment disaster in the history of the NHS have always held on to hope in the face of overwhelming odds. For many of us, there have been times when we were crippled by despair –people have died, clinging on to the hope that one day their suffering and the suffering of their loved ones, would be recognised and acknowledged. People worked all their lives to provide a secure future for themselves and their families – a security that was devastated when a wrecking ball crashed through our lives and ripped it all away. Security of a life without ill-health… security of a comfortable and peaceful old age… all gone.
This Inquiry has the power to restore hope that the incalculable losses can finally be addressed and justice can go some way to restoring the security we were robbed of through no fault of our own. A life of ill health, is a life half-lived.”
You can view Lesley’s testimony here
Leroy
Unfortunately we were not able to stay for Leroy’s hearing.  His case was unusual in that he had suffered an injury whilst being in prison and had to be taken out to hospital for a blood transfusion.  All the records relating to this, at three separate locations (the hospital, his custodial records within the prison and his GP) were later found to be missing.
You can view Leroy’s testimony here