Infected Blood Inquiry: Hep C diagnosis ‘brushed under the carpet’ and support still unfair, scandal victim says
- Credit: Archant
Yet another victim of the contaminated blood scandal has slammed the way support schemes even now fail to recognise the trauma of being infected with a killer virus by the NHS.
Maria Fletcher, 50, received a contaminated blood transfusion in 1990 while a patient at University College Hospital (UCH).
Maria was born with the blood condition beta thalassemia. As that causes low red blood cell count, she has to receive regular blood transfusions - one of which was contaminated with hep C.
Although she now lives near Leicester, Maria was a patient at University College Hospital (UCH) until 2013.
At the Infected Blood Inquiry in central London today she criticised - as have many others - the Caxton and Skipton Trusts set up to provide support to victims of the scandal, and she described the current scheme - the English Infected Blood Support Scheme (EIBSS) as "deliberately designed to make you give up" on applying for financial support.
She went on to explain that the Skipton and Caxton Trusts had even refused to help her fund IVF treatment when she was hoping to conceive. "You have to beg them for something," she said. "And they didn't want to know.
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"It's part of having hep C, it's not easy for me to conceive, and they didn't want to know at all."
The replacement - EIBSS - is no better, she said.
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Even with a letter from her consultant saying that constant pain in her legs was a result of her hep C, and with that doctor saying an adapted bed would help her, EIBSS asked her to make the doctor lay out in even more detail the precise symptoms she had, how they had been caused by the hep C, and how a special bed would help.
This was just last month - after the government announcement which gave the EIBSS a funding boost.
She said: "I am angry that they were asking me to waste doctors time so they could write me another letter! The first letter should have been more than enough.
"Yet they want more information. It's just so unfair."
Maria also spoke out against the lack of counselling and mental health support offered to those infected.
She explained counselling would have helped her come to terms with the stigma of the disease, particularly in the Greek Orthodox community of which she was a part.
"People would run a mile," she said. "People in the community would say it's a disgrace, that I shouldn't have been born."
Maria, who was forced to give up a promising career in the cosmetics industry due to ill health, added that before she was diagnosed she was never told samples of her tissue were being tested for hep C. She said she had been under the impression the tests were to assess liver damage as a complication of treatment for her beta thalassemia.
A letter shown to the inquiry demonstrated that in fact as early as 1986, her samples were being tested for hep C. The letter, to her UCH consultant from a lab in Wales confirmed that she had not at that time contracted hepatitis C.
Maria told the inquiry: "All I knew was that my lung biopsies were being tested for iron damage. This shows I was being tested for hep C, I was unaware of this and this demonstrates the knowledge they had of hep C even in 1986." When she was eventually told she did have hep C in early 1990, when she was around 21, and as the inquiry has heard previously, doctors didn't communicate the seriousness of the diagnosis.
Maria added: "I remember I went for a clinic and just 'by the way, you've got hep C' and brushed under the carpet. "It was never explained what it would mean."
Maria said the only sense of how serious hep C good be was when she was told it could mean a liver transport, which "shocked her" but that she was forced to teach herself about the disease.
"I learnt most of what I know about hep C from conferences [for beta thalassemia] and then the internet, there was never a leaflet about the risks."
Maria, who is married and has a step-daughter, said her hep C - combined with diabetes which requires frequent pin-prick blood sugar tests - meant she was terrified of passing the disease to her loved ones.
"I'm continually aware that I might drip some blood and infect my family," she said. "My step-daughter - she could quite easily pick up my toothbrush, my razor blade..."
The Infected Blood Inquiry will continue to hear evidence in Leeds next week before heading to Edinburgh and Cardiff over the summer and returning to London in October.