Day 46 of the Infected Blood Inquiry - London

This was the second day of the last round of infected/affected witnesses' oral statements and different members of staff from the Trust will be attending as many of the hearings as we can, to offer our support and continue to learn from people’s experiences.  Today was a very powerful day with testimony from people infected and affected by hepatitis C and HIV as a result of blood products specifically for bleeding disorders.

We would very much encourage people to view these hearings online or read the trasncripts when they become available in due course on the Infected Blood Inquiry website.  We can only provide a snapshot of events, as it is impossible for us to convey the full depth and power of these highly personal and emotive stories, the horror of what people have endured both physically and mentally and the common themes of discrimination, stigmatisation and cover-up that are continuing to emerge. 

Trevor and Louise

Trevor had haemophilia and was first given Factor 9 in 1985. He went to a meeting at the Royal Belfast Hospital for an information session on HIV for haemophiliacs.  Everyone who attended was told they would be tested for HIV, not asked.

They were asked if they wanted the results, Trevor didn’t, but Louise did.

She later found out he was HIV negative, but in the 90s he started to become very fatigued and unwell. By the mid-90s he was diagnosed with hepatitis C (and also CMV and parvo virus). He was given no information other than to” take sexual precautions”. They later found some brief information on the internet, which indicated that hepatitis C caused liver damage and that ultimately that that would be fatal, but there was no support, information or other resources.They were left completely alone with the news.

They were, however, a strong family unit, and supported each other. Trevor did not want others to know, which Louise respected, but that meant they had no support externally either.  They lived in a small community, who over time came to know about Trevor’s hepatitis C status and as a result were initially stigmatised there, describing how they were “social pariahs”. It is only more recently, with the publicity around the Inquiry that the local community has started to understand their situation better and are now being empathetic towards them. Throughout all this time, Louise had only confided and been supported by a single friend.

As we hear so often in the hearings, the diagnosis of hepatitis C changes people’s lives in so many different ways. Louise described them starting to take increasing precautions around the house, separating toothbrushes, not sharing razors, getting liquid soap instead of a bar of soap, separate towels, not sharing cups, such were the concerns around transmission.

She described the interferon treatment he had in 1997 as “carnage”.He became so weak he couldn’t get out of the bath, had rigors that couldn’t be brought under control but the only advice she got was for him to take paracetamol. He had to take the interferon every other day, so was on a perpetual cycle of being really ill one day, starting to feel better the second, only to have to inject it the day after and go through it all again.

This treatment had devastating physical and mental side-effects on Trevor and ultimately didn’t work. 

In the early 2000s he received letters advising him of the potential risk of vCJD, followed by a meeting in Birmingham where he was directly told he had received blood products that were at risk of being infected with vCJD. Trevor described how he lived in “constant fear of vCJD appearing”.

And it wasn’t until 2006 that he finally got cured, albeit with yet another round of interferon, this time, pegylated, which meant a once weekly injection only and ribavirin tablets.

However, as we hear so often from people who did these older treatments, he never “felt the same again” and is susceptible to picking up infections. Trevor also described how he endured such bad memory problems that at one point there were concerns he had early onset Alzheimers.

Like so many, the effect on his health reduced and stopped his ability to work, so they were dependent on Louise’s wages and over time had to draw on other sources of income to keep going.  

All of this, of course, had an effect on Louise. 

One of the key intentions of the Inquiry is to hear of the impact on those affected as a result of infected blood and Louise shared how she was left with anxiety and insomnia as a result of having care for Trevor, manage her job and family and increasingly take on more of the household duties like their finances. She also referred to the ongoing “Sword of Damocles” above their heads with the concern about Trevor possibly developing vCJD. To this day they have received no more information or offer of support around that.

In reference to clinicians, Louise asked “Where were Trevor’s rights? Somewhere along the line, someone lost their moral compass” and also questioned whether they, with the “Hippocratic oath or good practice” or even simply “humanity” had adhered to any of those principles. She talked of how they were grateful for the Inquiry, that it had given validity to the issues and enabled people to have the opportunity to speak openly.

Mark Stewart

Mark’s life was torn apart by infected blood. He, his brother and his father were all infected with hepatitis C as a result of blood products for Von Willebrand disease.

His father died in 2002 as a result of hepatocellular carcinoma and his brother years later as a result of a gastrointestinal bleed in 2013.

Mark was diagnosed as AB+ for hep C in 1994 but was told he was PCR negative right up until 2007.

When he found out, he was understandably “gobsmacked, devastated and angry” and wanted to know who was responsible. He was so upset about his diagnosis and subsequent treatment later that year that he separated from his partner and children to live with his mother as he was so worried about the impact on them.

Treatment for hepatitis C was gruelling, he was originally supposed to do 24 weeks but this then changed to being advised to do 48 weeks as he was not responding well. However, then the funding was withdrawn and despite trying to get the help of his MP, MEP, PCT and consultant, ended up having to fund the remaining half of his treatment himself to the tune of £7,000. As a result of the treatment, he suffered with two detached retinas and his mental health was badly affected. This and a further two treatments were all unsuccessful.

Whilst all this was going on, Mark was diagnosed with “depression and delusional disorder” in 2015 due to his “paranoia about being purposefully infected with hep C”. However, his research into his medical records indicated many patterns and anomalies that he, his brother and his father had been, despite them never consenting to any research.

Annette

Annette is Mark’s brother’s (Angus) widow.

She had met Angus in 1998 and they got married in 2001. She described a charming and talented man (he was a horologist) who she was very much in love with and was her “best friend”.They were both successful and enjoyed life to the full. His Von Willebrand disease did not greatly impact on his ability to do things and treatments for it were only occasional.

It was clear from his records that both Angus and his father received Factor 8 in the same week in 1980, despite both being treated well previously, with no complications with cryoprecipitate. They were both advised that they had had a reaction to it, however, and so were being changed to Factor 8 from then on.

As time went on Annette described how Angus was not unduly concerned about hepatitis C – he felt well and looked well and hadn’t been given any information and it wasn’t until 2002 when his father died that he became very aware of the potential consequences of a long term hepatitis C infection.

In 2005 he became symptomatic – at first fatigue, nausea and uncharacteristic mood swings.He endured treatment in 2006 with multiple side effects, Anette described him as the walking dead and in 2007 he was told that it had failed. He retired from his work soon after this and just a year later in 2008 was diagnosed with liver cancer.

It soon became clear that it was very advanced and, with multiple tumours, not an option for liver transplant although chemo-embolisation was given.  Annette was angry as in September 2007 he was hospitalised with jaundice, odema and other complications, she felt that a valuable opportunity to diagnose him then was missed, which might have meant that it could have been caught sooner.

However, a domino transplant did become available in 2008 and as this was the only option available to him he went ahead (a domino transplant is from a live donor who is getting a new liver themselves because they have familial amyloidosis, this means that the recipient of their liver will get amyloidosis but as symptoms are usually slow to develop it provides an option for someone in such a serious situation as Angus was).  This was successful - however, just a few years later in 2012, Angus developed lung cancer.  It was possible he could have been operated on for this but the Royal Brompton Hospital refused because of Angus’s high risk of having vCJD, and he died a year later of a gastrointestinal bleed.

Jane

Jane’s first husband, Graham, had severe haemophilia A. 

He was diagnosed with HTLV3 in 1985 (later known as HIV), although neither of them comprehended the seriousness of it, in part because they were advised that it “wasn’t as bad for haemophiliacs” at the time.

It wasn’t until 1987 that Graham was called in for an appointment where he was advised that he was HIV +.  This news rocked them of course and his only question to the doctor was “Am I going to die?” to which the doctor simply responded with a “Yes”…  He was told he would get chest infections and other complaints and the only other information he was given was to take sexual precautions and be careful when dealing with any wounds. There was the possibility of a drug trial (for AZT) which he accessed later – but which left him with devastating side effects that badly affected his quality of life.

Jane said no information was given and described how they were both so young and inexperienced about life as a result of them being “cocooned” from life as a result of their mutual disabilities they didn’t even think to ask any questions, but just went away, both of them unable to speak about it.

She described the climate of the time for people with disabilities very clearly and powerfully and that although they were both proactive and did everything they could to get on with life, the world was still not open to accommodating or supporting their specific needs and they had to fight to do anything. As a result of this they were both active campaigners for disabled people’s rights.

However, Graham’s reaction to the AZT, HIV and also hep C so badly affected him and Jane’s condition was also getting progressively worse over time that they became so ill they were unable to work or help each other as they had before.

Jane said “It contaminated our marriage, our relationship and everything we touched”…

The issues around their mutual need for care and support became increasingly pronounced and she drew a frightening picture of how isolated they both were with all this going on. Family did what they could but when Graham’s brother, Anthony (who also had haemophilia and HIV) died in 1992, he told her how it was like watching his own future unfold. Just a year later, in 1993, aged 34, Graham also died – she recalled him saying near the end “you know it’s a cover up, this shouldn’t have happened…”

Jane’s life was greatly affected by all of this and she developed PTSD and suffered with panic attacks and depression. She became unable to leave the house and couldn’t sleep and said that she hoped that the truth would come from the Inquiry: “If we have the truth, I won’t feel like this”.

On closing, she recalled how applying for financial support offered to people with HIV from the Macfarlane Trust was like “applying for disability benefits” – you had to justify what you wanted, no counselling or support was offered.