Day 35 of the Infected Blood Inquiry - Cardiff

As always, we are struck by the supportive and open atmosphere amongst all those taking part, those supporting them and all those who are working with those directly affected, including the Inquiry team, the Red Cross, the solicitors and others.  

Despite the enormity of the occasion, the gravity of the work at hand and the sadness evoked by many of the testimonies people share, the Inquiry team always provides a safe, confidential and supportive space, making sure to enable people to have time to talk with one another in the spaces in between. The timetable is staggered so that people can process a little of what they have heard before going in to the next one and support is provided to those who need it, for as long as it takes. Quiet spaces are always available for those needing to reflect or be private.

We would encourage anyone who has not yet shared their story with the Inquiry team to do so and be assured that they will be dealt with sensitivity and respect.

With days to go before World Hepatitis Day on July 28th with this year’s message being “Leave no one behind”, we urge anyone who could have been infected in this way to come forward.

Every week on our helpline it is clear to us that there are many still out there, despite it being decades since hep C was discovered in 1989 and since September 1991 when screening was introduced, who are only just getting diagnosed. 

We are also aware that many were tested and never given their results and others still who were “lost to follow up” – that is, they were diagnosed but for a variety of reasons (e.g. perhaps they moved area, or were too afraid of the interferon and ribavirin treatment in the past and felt nothing else could be done, so didn’t go back to their hospital) and who were then never seen by their hospital team again.  At present, across the country, letters are being sent out to try and reach those people to ensure that they come forward for retesting and treatment.

Our main concern is how many others are there, who were infected via blood and blood products but are still unaware that they have been at risk of hepatitis C and/or other blood borne viruses.  

It is so important that they can be identified as soon as possible so they can access new treatments, claim from the Blood Support Schemes they are entitled to receive support from and share their experience with the Inquiry team to assist them in their work.

Sir Brian Langstaff, the Chair of the Inquiry, repeated again in his opening statement the day before, the importance of everyone’s story being included.  

That every story is important evidence and that every single one will be heard or read. This can be done privately and anonymously. See the opening statement here.

Please share, talk to your family and friends and make sure they are aware of the risks and that the only way to know if you have hep C or not is to get tested. It is often symptomless for decades, or where symptoms are apparent, they are often misdiagnosed as something else.

Without question, everyone who has had blood/blood products in the past should be tested. Our helpline is always here for any questions and to provide support and guidance with this.

Today’s evidence, was again very individual but with similar themes emerging.  

Colin and Janet

Their son, Colin was a haemophiliac and ended up with HIV as a result of blood products being given to him. They were advised of this in a hospital corridor and as a result of his diagnosis of that, at the age of two, which coincided with scaremongering public awareness campaigns on HIV in the 80s, which Janet described as “disastrous”, meant that threats were made to their family. 

They were repeatedly victimised and singled out by people in their local area. Other parents wanted their children taken out of school not to be with him, “AIDS DEAD” was painted across their front door in giant letters, hate mail came through the letterbox, malicious phone calls were received and they were known locally as “the AIDS family”. Colin (Snr) lost his job as his employer was concerned “it would put off their customers”.

They described Colin as a brave boy who never mentioned his illness or asked what it was, but it was clear he understood his situation. After a playful argument with his brother Daniel he said “You’ll miss me when I’m gone… you can have my toys”.

At the end when he became very ill and was in hospital, Colin and Janet wanted to take him home, but the Professor in charge of his care advised “you can’t, no undertaker would take him”.  

It was truly heartbreaking to hear their story and how all of his family were affected by his death at the age of seven in January 1990.

Elaine

Elaine received blood after having a hysterectomy. After she had recovered, she wanted to donated blood herself to “give back”. This she did twice a year for 6 years before her diagnosis. The guilt, even though there should be none, is a recurring theme for many in this situation, who feel terrible that they may have completely inadvertently infected others.

At the end of her testimony she was asked what she would like to see happen and she asked that all those her blood was given to over those years were traced and called in for testing, whether this is possible is as yet unknown, but Sir Brian Langstaff took the time after thanking her for her testimony, to ask her not to feel guilty about this.

All of us who have lived with this illness, understand this awful creeping fear that we may possibly have infected others and this resonated around the room.

Mr AE

He was a haemophiliac who spent much of his early life in hospital as a result of that and received many high doses of Factor 8. He was never advised of any risks with that and was simply told it was a “wonder drug”.

At the age of 19, again at the time of the public awareness campaigns, just as he returned from holiday, he was told he had HIV and not to tell anyone, even his mother.

He described the stigma as terrible – he felt “dirty… it degrades you… I felt worthless”. Not surprisingly he “went off the rails” and got into trouble. Once a policeman stopped him from going into town and said “we don’t want people like you”. Later he started self-medicating with various prescription drugs and said he became a “therapeutic addict”. He was suicidal and told how close he came once, waiting above a motorway bridge for a lorry to come along, only one never did.

He suffered badly with the treatment for both hep C and HIV and experienced a variety of side effects as a result – hair loss, depression, insomnia, mood swings developed. Later he developed OCD and started bleaching everything, like all the doorknobs in the house, if he even had a tiny scratch on his hand, so fearful was he of passing anything on to his family.

In 2006 he was told he had developed cirrhosis, a frightening and daunting diagnosis, only to find out after living with the threat of that for two years that the original result was wrong and his liver was in fact ok.

Judith

Her husband was also a haemophiliac, but refused to let that prevent him from being extremely active, so had lots of treatments as result for bleeds that were caused.

She described a man who would have a go at anything, including doing up a derelict cottage amongst other things and being involved in all sorts of outdoor pursuits.

All this, despite having an artificial leg from an earlier injury where he had unfortunately developed gangrene and had to have a “through hip amputation” as a result of that.  

He initially started to become ill as a result of his HIV infection in 1983. He was well aware of the risks and was eventually diagnosed in 1984. She recalled thinking “we’re all going to die”, though she tested negative. Judith's husband started to feel more and more unwell, eventually being too weak to use his artificial leg and had to use a wheelchair. He died in 1990.

You can read the full evidence of participants here.