Infected Blood Inquiry: Blood scandal victim Colette Wintle slams UK government and 'unbelievable' new Royal Free letter
PUBLISHED: 08:59 14 May 2019 | UPDATED: 13:41 16 May 2019
A letter from Royal Free Hospital staff to Colette Wintle's then GP in 1984 shows hospital staff were aware some products were safer than others for treating haemophiliacs, but didn't stop using the riskier treatments.
The letter, which Colette saw for the first time on Friday morning before she gave evidence at the Infected Blood Inquiry - after the hospital disclosed it to the inquiry - was, she said, "unbelievable".
The doctor's guidance regarding her care was that using the older cryoprecipitate treatment or the less risky Desmopressin product was preferrable to factor products.
Colette, who trained as a nurse before illness intervened, was diagnosed as a haemophiliac as a small child, as was her sister.
Women are only rarely sufferers of the condition.
Speaking before the inquiry at Fleetbank House in central London, Colette reacted to the letter. She said: "As I read it, it's quite obvious that they were aware of the risks of using Factor products.
"A year later the Royal Free re-infected me with hep C. This makes it all the more horrific.
"The state of knowledge about it by 1985, at the very least about HIV - that horrifies me.
"By the middle of the 1970s they knew all the products were infected."
Colette had first been infected with hepatitis C in 1976 when she had her tonsils removed in, she now knows, before being infected with hepatitis B in 1982 and then re-infected with the then-newly discovered C variant in 1976.
Another letter from a Royal Free Hospital professor to her GP in 1985 shows that doctors were of the opinion Colette had hep C ('non-A non-B hepatitis' as it was then known) but did not inform her of this fact or discuss it with her for several years.
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Her hepatitis C diagnosis was not even mentioned when she underwent genetic counselling with her present, second husband in 1991.
She was only told of this later that year.
Colette also told the inquiry of the reaction of hospital staff when she raised concerns of having been exposed to the variant CJD degenerative brain virus in 1993.
"You became aware of this issue and you wanted to raise it with the haemophilia department at the Royal Free. I phoned them up and asked them have I been exposed to new variant CJD. I was met with a very dismissive attitude."
She referred to being seen as the "worried well". Colette was only told she had been exposed to vCJD in 2004 when her new Birmingham based doctor had asked the Royal Free for the details.
She continued: "It's absolutely shocking that the state is responsible for multiple infections of a very vulnerable patient group. It seems to me disgusting that the state can infect people in this way over three decades."
After her evidence, Colette told this newspaper her day at the inquiry was "hugely tiring", but added that she was positive about how proceedings had begun. She said: "The letter was just unbelievable. It's absolutely shocking. They knew the risks a year before they reinfected me.
"[The inquiry] has put us at the front and the heart it, its hearing our voices. That did happen at the Archer inquiry, but that was private and didn't have the same remit."
Colette also criticised the successive schemes of support and funding for victims of the scandal - both the now wound down Macfarlane, Skipton and Caxton Trusts which have been widely criticised, and the new English Infected Blood Support Service.
Of the latter, she said in evidence: "There are too many anomalies." Colette added she had two cousins in Dublin who were given substantial payouts by the Irish goverment two decades ago.
She said: "Why is my life worth so much less in the UK than my cousin's in Ireland?"
The inquiry will continue from May 21 in Belfast, before sitting in London again, Leeds, Edinburgh and Cardiff over the summer.