Day 9 of the Infected Blood Inquiry Hearings, Belfast

The day started with Sir Brian Langstaff reiterating the Inquiry team’s intention to put those infected and affected at the heart of the Inquiry, for the process to be open and transparent and as quick as thoroughness will allow, but also that it is totally independent and fearful of no one.
The majority of those attending today were not able to attend the preliminary hearings in London last year, so he explained that the Inquiry would move around the UK to ensure everyone had access and how each and every story shared with the Inquiry team was important, whether it was given orally at a hearing, or submitted in writing to him and he again encouraged people to come forward and do this, even though the Inquiry is now underway.
He also advised that others participating in the course of the Inquiry were also all entitled to be heard, and that even when differences of opinion, or perhaps things that were unpalatable were discussed, that all involved (whether patients, doctors, organisations or others) had the right to respond in due course.
Today there were three witnesses questioned on their statements.
Paul
Both he and his brother had received infected blood products as a result of their haemophilia.  Paul said he held the record in Northern Ireland for receiving the most blood products as a result of his many bleeds, in particular in connection with his elbows.
It was in 1987 he was told, very casually by his doctor, that he had NonA/NonB hepatitis.  As we keep hearing again and again, he was given little information and told not to worry, that he had probably had it for ages and that it would not affect anyone else.
He was also advised that there were safe versions of the products available that had been heat treated, but that these were in very short supply, so as he had already been at risk, he would continue to be given the “standard” version, so the heat treated products could go to others.
He later went through two punishing rounds of interferon based treatments before finally clearing his hep C.
He told he was never advised by his doctor to not try for children whilst on treatment (this is because ribavirin is mutagenic and can cause severe disabilities whilst someone is taking it and the guidance is that parents should then wait a further 6 months after treatment is finished before being safe to try again).  Despite a note from his doctor being produced that suggested otherwise, he insisted that he and his wife were never informed of this.
Both he and his wife became “paranoid” about the possibility of transmission around the house, another common theme we are hearing, with many, like Paul referring to becoming obsessive about cleaning.  He also talked about how this became normality for them, it was only when they talked to other families, who didn’t have all these routines and extra precautions in place in their daily lives, that they realised how very different their lives had become.
He said how his relationship with his wife had become stronger because of all they had gone through, but also that of course, living with the possibility of several life threatening illnesses (HIV, hep C, hep B and also CJD) had understandably “messed with their heads”.  It also caused him to have problems with insurance, dental appointments, hospital appointments that required him to be put on an isolation ward and ultimately limited his ability to further his career when the opportunity presented itself, as he knew his health and energy levels would make it impossible.
He also talked of the confusing information that was relayed.  One year getting a letter to reassure him that he hadn’t been exposed to CJD, only for another letter to arrive three years later suggesting he may have been possibly exposed.  It is not difficult to imagine how terrifying this would be.
Unfortunately, Paul lost his brother to liver cancer just a few years ago, possibly connected to his own previous hep C infection.
Paul made a plea for better understanding. He said doctors should never have been in a situation where they were giving “bad” blood, that people are dying at a rate of one every four days due to this illness and the financial support available for them in Northern Ireland is not equal to other UK countries, in particular referring to the special category mechanism payment put in place to acknowledge other conditions and the severe effects of interferon based treatments.  He also talked of the many widows who receive no support.
Brigid
Talked about her father who had also had haemophilia and had multiple exposures to infected blood, along with other medical complications over the years that had caused him to be severely disabled.
It was clear he was given poor and confusing information over the many years before he died, causing great difficulties for all his family.  She also bravely touched on an issue people rarely talk about what may happen when someone with hep C dies, in how their body may be handled.  She explained how the family were told by the undertaker that he was in “a disaster bag” and that they were only allowed to view him briefly and even then that his body was covered and his face obscured by a net.
She then talked of how her mother, after spending so much of her life with him in total secrecy about his illnesses, then spent the rest of her life becoming increasingly reclusive and unable to cope.
Anonymous
The last speaker of the day had received infected blood as a result of her diagnosis of Von WIllebrands.
It was not until years later, having had a diagnosis of ME, CFS and fibromyalgia that she bumped into one of her  doctors in a hospital corridor. The doctor asked how she was doing and she said how she felt tired, and the doctor said “Well if it’s not the ME, it must be your hep C”…
This was the first she had heard of it.  Later she was told “there was nothing to worry about” and yet any hospital appointments meant she was kept in an isolation ward and any dental appointments were only done at the end of the day, with everything double bagged in plastic and the dentist and the assistants covered from head to foot in gowns and masks.
She said it was also stigmatising talking to others about it, they wouldn’t understand, and so that then she referred to it more generally as “a liver problems” which people then interpreted as meaning she had an alcohol problem.
It is without question, that despite the range of disturbing stories we have heard to date, and the range of diifferent ways people have had their health affected, there is a commonality to everyone’s testimonies so far, whoever they may be and for whatever reason they received blood.
Poor information, stigmatisation, punishing treatment experiences, lack of care, sensitivity and support from doctors, lack of parity in the payment schemes and people’s difficulty in accessing them.
We encourage anyone who has, or is, experiencing any of these difficulties, to contact us on our helpline, so we can help make sure you have the right information.