Infected Blood Inquiry – 24th February 2020 – Report from the Intermediaries

Sir Brian Langstaff started the first public hearing this year, by saying they had so far heard 189 oral witnesses and that he had personally read 1000 written statements.
This is an ongoing process with more evidence still to come and more arriving all the time.  As awareness of the Inquiry grows, more people get diagnosed and want to come forward as they are outraged by their late diagnosis and appalled to hear of the history of this tragedy.  And of course, there are many that have been waiting for years to have their story, and of those they have lost, finally heard.
All of these people hope that their questions will be answered and that accountability and acknowledgement will be forthcoming.
Many who of you who have attended or watched the hearings online will be aware of the many and far ranging issues that people infected and affected by contaminated blood have faced. These are stories we continue to hear every day on our helpline.
HIV and/or hepatitis C infection, aside from the physical, emotional and mental health problems and practical difficulties that people face, also increases people’s feelings of isolation and stigmatisation. Whether it’s due to the ignorance and actions of others, and whether that is extreme or muted, or even that which may be self-perceived, the consequences are always devastating.
Many people withdraw partially or completely from life, so fearful are they of how they will be treated, or fears of possibly being a risk to others.
A testament to the Inquiry’s understanding of the depth of this stigma is their provision of a team of intermediaries.  They were aware that there were many people simply too reluctant to come forward, but who still wanted to contribute.  Despite the assurances about confidentiality and anonymity for all witnesses if required, some of them – for a variety of reasons – still felt unable to do so.
However, the team of intermediaries are able to speak to people privately and more informally, in order to hear their stories and give an “overall comprehensive voice to people and their families”.  This is away from the legal framework of the Inquiry and more general, but still no less important than the personal witness statements given orally or in writing.
The panel were on hand to talk about their findings and reported that they have so far spoken to 85 people between the ages of 30 – 80, from across the UK.
They all described how they felt humbled by the stories they had heard and were often visibly moved themselves in recounting them.  Indeed there were often gasps and groans from those attending on hearing the scenarios they described:
One woman told them that on diagnosis, her doctor had handed her a flow diagram outlining the life expectancy of someone with hepatitis C, which went up to 30 years.  She had been infected for 26 years at that point and was simply left to figure out the maths for herself.
A man who had felt so ostracised from using a dentist he simply stopped going altogether and extracted any teeth that needed attention over the years himself.
Another, who, like so many, had been going back and forth to the doctors for years before finally getting diagnosed, by which time he had developed cirrhosis.  When he got hold of his medical records he discovered the doctor had put an entry in saying “miserable man, always complaining”
And there was the heartbreaking story of a teenage haemophiliac, bluntly told he had HIV and approximately 2 years to live. He was advised not to tell his parents or friends (which he never did) and when given information on the possible risk to others was advised not to have sex, but that “Tears don’t count”.
We highly recommend you read intermediaries report to hear on their findings – you can do so here  www.infectedbloodinquiry.org.uk/about/inquiry-intermediaries
If you need any support or information about any issue related to hepatitis C, please call our helpline on 020 7089 6221 or by email helpline@hepctrust.org.uk