Contaminated blood scandal: Ex-Royal Free patient Nicola Jones in fight for support decades after hep C infection
PUBLISHED: 10:24 05 December 2019 | UPDATED: 10:24 05 December 2019
Nicola Jones was given contaminated blood products on the NHS, which led to her developing hepatits C.
The former Royal Free Hospital patient has suffered lifelong health problems that one of her former consultants has confirmed are likely to have been caused by hepatitis.
Her clinical notes confirm she was given Factor VIII to treat mild haemophilia, and that she then tested positive for hepatitis C - though she did not know this at the time.
So why isn't Nicola, 49, eligible for any funding from the English Infected Blood Support Scheme (EIBSS)?
The mother of two, who works for an ambulance provider and lives in Hertfordshire, told this newspaper: "I was diagnosed in 1976. They didn't call female haemophiliacs that, I was just a 'carrier'. It was 1980 when I first had Factor VIII, not that I knew that. It was throughout the 1980s that my health changed."
Although she described herself as "quite lucky" to "only" be a mild haemophiliac, Nicola explained that her illness was not treated the same as it would have been had she been male. She has confirmed in her medical records that she was given Factor VIII during tonsilitis surgery in 1980. She was just nine. This is when she contracted hepatitis.
In October, in a statement to the ongoing Infected Blood Inquiry (IBI) she added: "This was the first time I was given Factor VIII. The letter from the Royal Free confirming this also states I should have been reviewed at the Haemophilia Centre on a two-weekly basis for liver function tests."
This never happened. And then when antibodies for the hepatitis C vaccine were found in a blood test, she was not given the follow-up test she should have had for the disease itself. Nicola did not learn about the support schemes which paid those affected by the contaminated blood scandal until the mid-2000s. She said: "It's never worked for me. I only found out about the funds in 2004. My GP said you should apply. Obviously, I was given Factor VIII with hep C."
So she applied to the Skipton Fund - a predecessor of EIBSS - but was rejected on the grounds that she had cleared hepatitis C naturally by 1998 and the clinical assessor believed "the doctors got it wrong" and she had "on the balance of probabilities" cleared hep C within six months. As she told the IBI: "They concluded that the doctors got it wrong, and the 1997 test must have been wrong as well."
Nicola disputes this and a clinician has confirmed the hospital error was not to test her further in the 1990s.
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She said the fact remains that she suffered ill health and continues to do so because of the infection.
She said: "It has affected my life in the sense that my health really isn't great. I don't have any energy for days."
She suffered from breast cancer, but was told "it's not the right kind of cancer" to qualify for support.
In his letter to the Skipton Fund, former Royal Free Haemophilia Centre director Professor Edward Tuddenham wrote in support of Nicola's application for financial support.
In the letter - from 2009 - seen by this newspaper, he said: "I am convinced that she had a period of chronicity of hepatitis C infection that would have shown up with abnormal liver function tests had they been performed."
He also wrote: "Recent studies have been published which show a strong association between hepatitis C infection and autoimmune disease. I would put this in the balance as an additional argument for her to be compensated[...]"
At this stage EIBSS has confirmed it is reassessing her application.
A spokesperson said: "EIBSS assess applications on an individual basis and we always try to process applications as quickly as possible.
"Upon receiving Nicola's application on 8 November 2019, we identified that we require further evidence to support her application at the medical assessment stage and we are currently awaiting this information. Our team are available to help her with any queries she may have."
The spokesperson added that, in response to Nicola's concerns over the impartiality of those determining applications, they are all assessed by an independent medical expert and "where there is a another individual medical assessor will be asked to assess the application".
EIBSS does not hold details of Skipton Fund applications.
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