Day 10 of the Infected Blood Inquiry

We attended the majority of the second day in Belfast and during the breaks had the opportunity to meet with members of the Red Cross support scheme, who are on hand to support people in person on each day of the hearings.  They reported how moved they were by the hearings and of course as a result how they are learning so much about how hepatitis C affects people.  It was great to touch base with them, learn a bit more about how they are supporting people there and make links to share our expertise to complement theirs.  They are a caring team and it is great to know that people will have their support onsite (and also by telephone) if needed.

We also met with one of the solicitors who will be representing people, to understand better how they are working with those affected.  All of these opportunities to network are incredibly helpful, so we can be best informed when talking to people who may have questions about any of these aspects when calling us on the helpline.

And of course we were again able to show our direct support to those attending, some of whom are already known to us from the helpline, and sadly, some who simply weren’t aware of us, or simply hadn’t sought our assistance in the past.  

A lot of the work we do on the helpline is to clarify information people have been told, sometimes that means we can give reassurance by having the time to explain things in more detail than a doctor may have time to, and also by sharing our own experiences.  We can also make sure they are aware of their rights and guide or support them to take the appropriate action on things that may happen to them where possible.  Over the years we have unfortunately had very little contact with patients and their families from Northern Ireland… literally a handful of callers, so again it was really useful for us to learn directly from them about the problems they have been facing there, stigma around the illness being a major barrier for many.

Simon

The first witness of the day, was also the Chairman of Haemophilia Northern Ireland, so he was well aware of all the issues that many haemophiliacs have faced over the years, aside from his own experience.

He gave very calm, concise and powerful responses to the questions posed to him about his own very difficult personal experience of receiving infected blood; generous enough to acknowledge the incredible and sometimes lifesaving help he had received, many times from doctors and the NHS over the years, as well as being very firm and clear about where serious errors had been made and sensitivity had been greatly lacking.  It was extremely moving to hear and resonated greatly around the room.

As we keep hearing so frequently from those giving evidence, his diagnosis was known about much earlier than when he was told about it himself.  He had suffered a litany of problems as a result of his illness and two interferon-based treatments, including fighting back from having a brain haemorrhage.   

At one point he said “Sometimes, it’s only when you get to the end of the journey that you realise how difficult it has been”.  This is so true of living with an illness like hepatitis C, for most of us it is a long, slow process over many decades and even for those of us lucky enough to get through it fairly unscathed in terms of liver damage, other complications and who have had successful treatment outcomes, it still leaves its mark in more ways than one.  He described how he felt damaged.  That the experience of it all had left him “emotionally overloaded”, that there are the problems you can see and the ones that you can’t.  How he couldn’t help but feel dirty, unclean and guilty, despite having done nothing wrong and that he felt he was perceived as an alcoholic because he had cirrhosis.

He also talked about the ripple effect and this is also so true, for having hep C also greatly affects all of those around us in other ways.  

When asked for his comments to close he said the gap between being diagnosed and being told was completely unacceptable and a great cause for concern and drew attention to the fact that he, along with other haemophiliacs realised that they had effectively been “unknowingly observed” was chilling.

It was also pointed out, that perhaps even more particularly with the medical notes of haemophiliacs, that these should have all been kept and never destroyed, given that they had a lifelong and high risk problem with differing bleeding disorders.

He closed by saying that at last “we have an Inquiry we can have confidence in” and hoped that people will get some sort of closure.

Danielle

Her mother was given a transfusion in 1981 during childbirth and when she was diagnosed many years later the information given to her was blunt, insensitive and frightening – don’t share toothbrushes, tell any sexual  partners, even don’t share cups.

She was brave enough to tell a few friends at school about what had happened to her mum, but soon found they wouldn’t stand so close to her or wouldn’t receive the netball from her if she had it passed to her because they were frightened.

She essentially became her mother’s carer during her teenage years and described a terrifying incident of finding her mum in the bedroom having a variceal bleed.  At the time interferon and ribavirin was the only treatment available for hep C and this would not have been an option for her, the only option being a transplant.

She eventually had one but it was not a good match for her and though she improved for a while, she soon started to develop ascites again resulting in her having drains every few weeks, and it fast became clear she would need a second transplant.  This time she had to undergo treatment for the hep C first, for which she would have had to travel back and forth from Northern Ireland to London, but she was so ill it was eventually started in Northern Ireland.  She suffered with lots of side effects from that and as a result started to give up hope and said she didn’t want another transplant, she just couldn’t face it.  Eventually, she agreed and things were set up for her to come to London to stay, but then there wasn’t one available after all and so the hospital then advised her to “return to Belfast to spend whatever time she had left with her family”…

And then, when one was available and she had a second transplant, Danielle described how her mum continued to have so many difficulties, some related, some not, but it meant that her mum missed out on so many family occasions due to her frequent hospitalisations and that as her carer, Danielle spent a great deal of her time administering and checking she had taken all her medications and becoming her power of attorney, to help support her in every way she could.  This greatly impacted on her ability to work.

It was a heart breaking testimony, illustrating very well the impact that hep C can have both on the person infected and those that are affected.  It also gave pause for thought about the many people we speak to on the helpline, who do not have the kind and loving support of family, partners or friends when they are dealing with this illness, and how unmanageable that must be. 

Anonymous

The last hearing we were able to attend that day was from a haemophiliac who back in 1984 was given a warning that he may have “Non A/Non B hepatitis” but it wasn’t until he had a burst appendix that subsequently records were found that illustrated that he had been since been tested for hepatitis C and that his liver function tests were abnormal. He was not too concerned at the time because he was led to believe that HIV “was the one to be concerned about”.

He wished he had had better information so he could have asked questions.  Once he knew he took it on board to make the lifestyle changes he could to reduce the chances of progression – no alcohol, better diet, less red meat etc, and described how he would have taken these steps a lot sooner had he been given the right information.

He started to experience severe fatigue, nausea and sweating profusely in 2004 and embarked on a course of interferon and ribavirin treatment.  He said this was extremely distressing, he had lots of side effects and felt suicidal.  Work became incredibly difficult and as a result he had to step back and he has not been able to return ever since.  This made him upset as he had always wanted to ensure he was a good role model for his kids and instil in them a good work ethos… prior to treatment he had been able to work up to 70 hours pw.

And the treatment didn’t work either and he wasn’t able to access a different one until 2013 when a Fibroscan revealed liver damage.  This treatment (Boceprevir, also interferon based) was again challenging in terms of side effects.  I also meant he had to eat more fat to best aid absorption of the drugs and he started to gain a lot of weight.  Thankfully the treatment did work for him but he described having rigors and neutropenia whilst taking it and to this day he has to attend a pain clinic to manage ongoing joint pains, along with chronic fatigue, IBS, fibromyalgia and insomnia.

We would encourage everyone to watch the evidence of these participants when they are available online on the Infected Blood Inquiry’s website.